The Demands of Partnership: a Normative Foundation for Shared Medical Decision-Making Dissertation Presented in Partial Fulfil

The Demands of Partnership: A Normative Foundation for Shared Medical Decision-Making

Dissertation

Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy in the Graduate School of The Ohio State University

Allison Emily Massof, M.A.

Graduate Program in Philosophy

The Ohio State University

2018

Dissertation Committee:

Piers Norris Turner, Adviser

Dana Howard

Tristram McPherson

Abe Roth

Allison Emily Massof

2018

Abstract

The contemporary vision of the doctor-patient relationship is a partnership. With the rejection of medical paternalism, ethicists and medical professionals recognized the importance of ensuring that patients were active participants in decisions regarding their care. In place of granting doctors authority to make medical decisions, doctors and patients are now expected to share authority over treatment decisions. However, this expectation is not supported by the current normative foundation for the doctor-patient partnership; specifically, its commitment to respect the patient’s right of self-determination. Therefore, the contemporary ideal of the doctor- patient relationship is at odds with the normative foundation upon which it rests.

The aim of this dissertation is to offer a revision to the normative foundation for the doctor-patient partnership, in order to do justice to the ideal of a shared decision-making process.

In Chapter 1, I detail the theoretical development of the ideal of the doctor-patient partnership and I identify a tension between the envisioned partnership and the commitment to respect the patient’s right of self-determination. In Chapter 2, I show that this tension is deeper than has been appreciated. The incompatibility between the doctor-patient partnership and the commitment to respect the patient’s right of self-determination runs deeper than has generally been acknowledged.

In Chapter 3, I argue that we should abandon the commitment to respect the patient’s right of self-determination. I argue that the partnership model is worth preserving because it

i enables the doctor to function fully as a patient health advocate. The entitlement to try and persuade patients to revise decisions regarding their care is important for protecting patient health from being devalued. If we instead embrace an account of the doctor-patient relationship that requires that persuasion be justified, we lose out on a key dimension of this valuable social role.

However, non-domination is compatible with the doctor’s entitlement to try and persuade patients to revise their decisions.

In Chapter 5, I conclude the dissertation by examining how to share decisional authority in such a way that the vision of the doctor-patient partnership can be achieved. I propose an alternative account of decisional authority that draws on Abraham Roth’s account of practical intersubjectivity. This account of decisional authority is distinctive because it awards doctors and patients the authority to reopen deliberation; this contrasts with the prior accounts’ focus on the authority to close deliberation. It is an account of this kind, I argue, that is able to secure the vision of the doctor-patient partnership.

Acknowledgments

First off, thanks to my adviser, Piers Turner. I’m just now appreciating how much you pushed me to improve and really develop the ideas in this work, because you’ve always done so with patience, kindness, and humor. It’s been wonderful to work with you these past several years, and I’m grateful for your mentorship. I’m also deeply indebted to my committee, Dana

Howard, Tristram McPherson, and Abe Roth, for their extensive and helpful feedback at all stages of this process.

In addition to my committee, I’ve been lucky in encountering wonderful teachers over the past thirteen years. Thanks to David Soud, David Merli, and Robert Kraut for the years of guidance and confidence. Special thanks to Pam Vail for teaching me to show up, pay attention, tell the truth, and never get attached to the results (and for listening to the voicemails from the

Bilts’ late-night phone calls).

There are several people in the graduate student body here who have been particularly helpful in work and in life over these past years who I’d like to thank: Daniel Wilkenfeld, Christa

Johnson, Jamie Fritz, Kira Wedin, Daniel Olson, and Keren Wilson. A special shoutout goes to

Jerilyn Tinio. I don’t know that this would have happened without you, and I sure am glad we’ve gone through this together.

Kitty, you’ve been a great work buddy and a reliable paperweight. It’s distracting when you attack my pencil while I’m trying to take notes, but the companionship is worth it.

iii

To all my family and friends, I thank you for the love and support over the past seven years. Thanks to the McCarthys for so warmly welcoming me into your family and providing me with all the good will I could ask for. Thanks also to my stepmother Pat for always being ready to talk, to visit, and to be there for me. Your constant support has meant so much over the years, but especially over these past few months.

When you have two incredibly accomplished, impressive people for parents, it’s intimidating to try and follow in their footsteps. So I’m incredibly lucky that my parents have always encouraged me to carve out my own path instead. Thanks to Mom and Dad for both modeling what it’s like to live a full life, and for teaching me that what matters most of all in what you do is trying to put something good for others into the world.

Even during the most stressful or demanding periods of this process, it was harder than I anticipated for me to become completely unmoored. Such stability can be credited entirely to the support and care of my fiancé Mike. The kindness, patience, strength, and love you provided over this past year can’t really be explained, but anyone lucky enough to know you already understands. Thank you for the joy and love you have brought to my life. I’m so happy that our partnership will continue for many years to come.

Vita

June 2007……………………………………………………….Roland Park Country School

May 2011……………………………………… ………………..B.A. Philosophy and Dance,

Franklin and Marshall College

May 2014………………………………………..M.A. Philosophy, The Ohio State University

September 2011 to present……………Graduate Teaching Associate, Department of Philosophy,

The Ohio State University

August 2015- July 2016………………………………………Graduate Administrative Associate,

Center for Ethics and Human Values,

The Ohio State University

Fields of Study

Major Field: Philosophy

Areas of Specialization: Medical Ethics, Political Philosophy

Table of Contents

Abstract…………………………………………………………………………………………...i

Acknowledgments…………………………………………………………………………….....iii

Vita…………………………………………………………………………………………….....v

List of Tables…………………………………………………………………………………….ix

Chapter 1: The Vision of Medical Partnership……………………………………………………1

I. Abandoning Paternalism……………………………………………………………...... 5

II. The Rise of Self-Determination……………………………………………………….....10

III. The Informative Model……………………………………………………………….....18

IV. The Doctor-Patient Partnership………………………………………………………....24

V. Partnership vs. Self-Determination……………………………………………………....27

V. What Does Achieving Partnership Take?...... 30

Chapter 2: Can Partnership and Self-Determination Be Reconciled?...... 35

I. Partnership and Disagreement…………………………………………………………….39

II. Does Deliberation Violate Self-Determination?...... 47

a. The Argument from Rational Control…………………………………...... 48

b. The Argument from Limited Control……………………………………………....53

III. The Value of Promoting Autonomy?...... 56

IV. The Value of Promoting Well-Being?...... 66

vi V. Doctors: Partners or Contractors?...... 75

VI. The Challenge to Partnership………………………………………………...... 82

Chapter 3: The Value of Health Advocacy……………………………………………………...85

I. The Doctor as Contractor………………………………………………………………...88

II. The Doctor as Patient Health Advocate…………………………………………………93

III. The Value of Patient Health Advocacy……………………………………………….102

IV. Does Health Advocacy Reintroduce Paternalism?...... 111

V. The Potential Instability of Patient Authority………………………………………….118

Chapter 4: A Non-Domination Approach to Patient Authority………………………………..120

I. Preserving Anti-Paternalism…………………………………………………………….123

II. The Non-Domination Approach to Rejecting Paternalism…………………………….127

III. Non-Domination and Patient Authority………………………………………………142

a. Against the Institutional Model……………………………………………………144

b. In Favor of Deference to Patients………………………………………………….151

IV. The (Ir)Relevance of Non-Interference……………………………………………….161

V. Sharing Decisional Authority………………………………………………………….167

Chapter 5: “Up to Us”: Sharing Authority……………………………………………………..170

I. Desiderata for Shared Authority………………………………………………………...172

II. Mutual Vetos…………………………………………………………………………...176

III. Independent Domains…………………………………………………………………184

IV. Shared Deliberative Standing…………………………………………………………194

V. Meeting the Demands of Partnership…………………………………………………..211

vii References………………………………………………………………………………………213

viii

List of Tables

Table 1. ADENOMA*…………………………………………………………………………. 181

Table 2: ADENOMA*………………………………………………………………………….208

Chapter 1: The Vision of Partnership

The defining feature of 20th century medical ethics is the rejection of the claim that doctors should have exclusive control over medical decision-making.1 The traditional model of the doctor-patient relationship, or the ‘paternalistic model’2, awarded doctors complete authority over medical decisions on the grounds that doctors uniquely possessed expertise in medical matters, and that doctors were professionally bound to promote patient well-being. However,

20th century medical ethicists argued that the paternalistic model disregarded the powerful reasons to award patients authority over medical decisions.3 Among several reasons, 20th century ethicists argued that the paternalistic model denied patients authority over decisions that they are entitled to make, given the individual patient’s right of self-determination.4

Today, ethicists and professionals working on medical decision-making treat the patient’s right of self-determination as a central part of the normative foundation for ethical medical decision-making. Given this, one might expect the resulting account of the doctor-patient relationship to award patients exclusive control over medical decision-making. However, the contemporary ideal of the doctor-patient relationship is a collaborative relationship between the doctor and patient. Current trends in clinical practice, especially the emphasis on shared decision-making, are centered around the idea of doctors and patients working together to make

1 Ruth R. Faden and Tom L. Beauchamp, A History and Theory of Informed Consent, (Oxford: Oxford University Press, 1986), 37-38. 2 Ezekiel J. Emanuel and Linda L. Emanuel, “Four Models of the Physician-Patient Relationship”, Journal of the American Medical Association 267, no. 16 (April 1992): 2221. 3 Jay Katz, The Silent World of Doctor and Patient, (Baltimore: Johns Hopkins University Press, 1984): 87-90. 4 Faden and Beauchamp, History and Theory, 86-101.

1 medical decisions. This is a somewhat surprising outcome, given the widespread acceptance of the claim that medical decisions are the patient’s decisions to make.

The collaborative approach is seen as the most promising way forward from the rejection of paternalism. But discussion of the shape of doctor-patient collaboration is often vague, with underdeveloped accounts of the underlying normative principles. The aim of this dissertation is to clarify and defend an account of the doctor-patient relationship as a true partnership, one that realizes the ideals expressed in initial discussions about shared decision-making.5 The distinctive feature of the doctor-patient partnership, I argue, is that neither the doctor nor the patient has the authority to unilaterally terminate deliberation in medical decision-making. In cases of disagreement, both parties are entitled to try and persuade the other party to revise their decisions or commitments. This mutual entitlement is crucial support for a deliberative process aimed at reaching a decision that achieves good health-related outcomes, while being minimally invasive with respect to a patient’s non-health-related projects.

However, it is common among defenders of the partnership model to accept a normative foundation that includes a commitment to respect the patient’s right of self-determination. The proponents of the doctor-patient partnership accept that this right implies that medical decisions are the patient’s decisions to make. But this seems to create a serious conflict with the doctor’s supposed entitlement to push back against patient decisions. If a key part of the normative

5 For an early statement of the ideals of shared decision-making, see Making Health Care Decisions: A Report on the Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship, Volume One: Report, prepared by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, (Washington, D.C., October 1982), 13-40. For a later, extremely influential account within the medical profession, see Cathy Charles, Amiram Gafni, and Tim Whelan, “Shared Decision-Making in the Medical Encounter: What Does It Mean? (Or It Takes At Least Two to Tango)”, Social Science and Medicine 44, no. 5 (1997): 681-692.

2 foundation for ethical medical decision-making directly implies that treatment decisions are the patient’s decisions to make, then the partnership model would seem to have to permit patients to unilaterally terminate deliberation, sometimes with very little contribution from the doctor.

This is particularly salient in cases of doctor-patient disagreement where the patient has reached a competent and informed decision. In these cases, it seems plausible that the doctor’s attempt to persuade the patient to select a new course of action would violate her commitment to respect the patient’s right of self-determination. Consider the following case:

ADENOMA: Phoebe has been diagnosed with a benign tumor on her pituitary gland that causes irregularities in hormone production. The tumor is a microadenoma (<10mm). The irregularities impair certain of Phoebe’s cognitive and biological functions, but the mass itself is not large enough to affect physical functions (e.g. Phoebe’s visual capacities). Her endocrinologist Ellen has presented to Phoebe information about her condition, the treatments available, and the risks and benefits attending each one. Ellen believes that Phoebe should make surgical removal a last resort and should instead manage the symptoms with cabergoline. However, based on the information Ellen has provided Phoebe, Phoebe has decided she wants to avoid the common side effects of cabergoline: grogginess and concentration problems on the days after it is taken. Given that Phoebe is attempting to complete her dissertation in the next several months, the side effects of the medication has greater costs for her than for the average person. Thus based on the information provided, Phoebe has immediately decided that she wants surgical removal. Ellen wants to try and convince Phoebe to try out the medication and to try and develop techniques for dealing with the side effects, but Phoebe simply wants Ellen to authorize the surgery as soon as possible.

Respect for the patient’s right of self-determination seems to imply, in cases like ADENOMA, that doctors are obligated to defer to the patient’s decision. But the partnership model suggests that doctors are entitled to push back on the patient’s decision, even in cases like ADENOMA.

Thus the partnership model of the doctor-patient relationship, despite its standing as the contemporary ideal, appears to conflict with the normative foundation upon which it rests. The difficulty of resolving this tension motivates the project of the dissertation; rather than abandoning the doctor-patient partnership, I argue we ought to reconsider the commitment to

3 respect the patient’s right of self-determination. The doctor-patient partnership requires a distinct normative foundation.

In this chapter, I lay out the vision of the partnership model and its tension with the commitment to respect the patient’s right of self-determination. I begin with an overview of the

20th century rejection of the paternalistic model and the key role that the right of self- determination played in that rejection. I then explain how, due to concerns about the implications of a doctor-patient relationship that awards exclusive decisional control to patients, the introduction of respect for the patient’s right of self-determination has led to a general consensus that we should think of the doctor-patient relationship as a partnership.

After laying out the lineage of ethical thought that has led to the doctor-patient partnership, I sketch some of the key commitments of the partnership model—specifically, the commitments to ‘mutual participation’ and ‘mutual satisfaction’. Realizing these commitments requires granting both doctor and patient an entitlement to challenge each other’s decisions and practical commitments. Absent such entitlements, the prospects for a fully shared decision- making process would be weakened.

Finally, I draw out the tension between the envisioned doctor-patient partnership and the commitment to respect the patient’s right of self-determination, using ADENOMA to illustrate this conflict. I conclude with an overview of the trajectory of the dissertation, and a gesture at a possible strategy for addressing the problem posed.

4 I. Abandoning Paternalism

Before examining the commitment to respect the patient’s right of self-determination and the resulting vision of a doctor-patient partnership, we must understand how 20th century ethicists set up the initial problem. To begin, consider the following case:

WITHHOLDING PROGNOSIS: Paul suffers from terminal metastatic non-small cell lung cancer. However, Paul’s doctor has decided that Paul’s prospects for a longer, higher-quality life will be far better if Paul does not know that he is terminally ill. Paul has been undergoing palliative chemotherapy; the treatment will merely prolong his life and ease his symptoms. However, Paul is unaware of this; Paul believes that the chemotherapy is aimed at eradicating his cancer.

WITHHOLDING PROGNOSIS has two morally important features to attend to. First, Paul’s doctor has withheld information from Paul that is pertinent to the decision to undergo chemotherapy; it is information that we could reasonably expect to influence Paul’s preferences about his care. Were Paul to learn that his illness is terminal, he may desire to cease chemotherapy and to live out the remainder of his life without this intervention. By withholding from Paul his prognosis, Paul’s doctor distorts the appearance of the available courses of action.

He fails to represent accurately the expected benefits of the chemotherapy. This omission strikes many as morally impermissible; Paul is entitled to know all relevant facts about his condition, and the doctor acts wrongly by withholding this information. Thus, WITHHOLDING

PROGNOSIS depicts a specific behavior, one whose permissibility we can evaluate.

Second, Paul’s doctor withholds full diagnostic information out of concern for Paul’s well-being. Paul’s doctor does not withhold this information because the doctor stands to profit off Paul’s continued chemotherapy, or because Paul’s doctor is interested in accumulating case studies regarding the effectiveness of palliative chemotherapy. Rather, Paul’s doctor withholds this information simply because he believes that Paul benefits from ignorance of the relevant

5 facts. Paul’s choice to continue with chemotherapy affords him the ability to live longer; and

Paul’s ignorance of his terminal status allows an optimism about the future that would be absent were he informed of his inability to recover. The doctor’s reason for withholding information from Paul is beneficent; he is not moved by self-interest, but by concern for Paul’s well-being.

Therefore, WITHHOLDING PROGNOSIS also depicts a specific justification for the doctor’s behavior.

WITHHOLDING PROGNOSIS exemplifies a class of actions characteristic of “medical paternalism”.6 ‘Paternalism’ refers to intervention with a person’s decision or action that individual would otherwise have the authority to make or do, justified on the grounds that the person will be better off from intervention than they would be if left alone.7 Before the shift in medical ethics, for instance, doctors commonly exercised the “therapeutic privilege”8 wherein they would strategically withhold or misrepresent important information to patients on the grounds that patients would be better off not knowing. Other paradigmatic examples of paternalistic behavior include administering treatment in the face of explicit refusals because the doctor deemed the treatment necessary to heal the patient9, coercing patients into accepting certain treatments in order to make patients better off 10, and breaching patient confidentiality in

6 Allen Buchanan, “Medical Paternalism”, Philosophy and Public Affairs 7, no. 4 (Summer 1978): 370-390; Daniel Groll, “Medical Paternalism: Part 2”, Philosophy Compass 9, no. 3 (2014): 194-203. 7 Gerald Dworkin, “Paternalism”, The Monist 56, no. 1 (January 1972): 65. 8 Faden and Beauchamp, History and Theory, 37-38 9 James Childress, Who Should Decide? Paternalism in Health Care, (New York: Oxford University Press, 1982), 225-226; Schloendorff v. Society of New York Hospitals, 211 N.Y. 125, 126, 105 N.E. 92, 93 (1914) 10 Rolf Wynn et al. “Psychologists and Coercion: Decisions Regarding Involuntary Psychiatric Admission and Treatment in a Group of Norwegian Psychologists”, Nordic Journal of Psychiatry 61, no. 6, (2007): 433-437.

6 order to protect patients.11 20th century medical ethics focused largely on the rejection of medical paternalism.

The 20th century choice to examine the actions above through the lens of paternalism may seem odd. One could choose to focus exclusively on the doctor’s behavior in

WITHHOLDING PROGNOSIS. For withholding information to alleviate emotional suffering seems no worse than withholding information to exploit the patient financially. And excluding patients from decision-making to avoid overburdening them seems no worse than excluding patients from decision-making to prevent them from discovering weaknesses in the doctor’s expertise. Given that “medical paternalism” was often identified through a class of behaviors, one might wonder why the solution was not simply to implement checks on the doctor’s power to prevent these behaviors, irrespective of the doctor’s justification for their behavior. Framing the criticism of cases like WITHHOLDING PROGNOSIS as a criticism of paternalism indicates that 20th century ethicists cared about more than correcting certain behaviors; they were concerned with what these behaviors demonstrated about the doctor-patient relationship more broadly.

Using these specific behaviors as examples, ethicists critically analyzed what they called the “paternalistic model” (or the “priestly model”)12 of the doctor-patient relationship.13 The paternalistic model of the doctor-patient relationship emerges from a particular normative foundation coupled with certain assumptions about doctors and patients. The relevant normative foundation is one that establishes the protection and promotion of patient well-being as the sole

11 Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 7th ed. (New York: Oxford University Press, 2013), 317-318. 12 Robert Veatch, “Models for Ethical Medicine in a Revolutionary Age”, Hastings Center Report 2, no. 3 (June 1972): 5. 13 Emanuel and Emanuel, “Four Models”, 2221.

7 moral consideration. Commonly expressed as the Hippocratic principle, or the principle of beneficence, the imperative to “Help, and do no harm to the patient” is the fundamental determinant of morally permissible doctor-patient interaction.14 Given that promotion of patient well-being is the aim of medicine, the doctor-patient relationship must be constructed so as to ensure that both doctor and patient are permitted to do what is necessary in order to achieve this goal.

Furthermore, the paternalistic model makes specific assumptions about the doctor’s unique ability to promote patient well-being. First, doctors are assumed to set aside self- interested considerations in favor of the patient’s interests—they are constrained by altruism.15

The doctor necessarily is committed, simply by being a doctor, to decide and act in ways aimed to promote the well-being of the patient; intentionally compromising prospective patient benefit for the sake of personal gain is unacceptable. The paternalistic model simply assumes that doctors always comply with this commitment. Second, doctors possess expertise with respect to diagnosis, prognosis, and treatment. Because of years of training and experience, doctors are assumed to be well-positioned to assess which course of action is most likely to promote patient well-being.16 Third, patients are assumed to lack such expertise; patients rarely know much of anything about medicine, and it is assumed that they could not understand the teachings of medicine or facts about their condition.17 Therefore, given the above considerations, the paternalistic model assumes that the doctor is better positioned than the patient to make decisions about the patient’s care.

14 Robert Veatch, “The Principles for Medical Ethics” in The Patient-Physician Relation: The Patient as Partner, Part 2, (Bloomington: Indiana University Press, 1991), 64-67. 15 Katz, Silent World, 88, 93-95. 16 Katz, Silent World, 88-89, 92-93. 17 Katz, Silent World, 91-93.

8 Because of the centrality of promoting patient well-being and the doctor’s presumed superiority at accomplishing this aim, the paternalistic model awards doctors the authority and the responsibility to make medical decisions on behalf of their patients. The doctor chooses the treatment he believes will be best for the patient, and he does whatever he believes is required to ensure the decision is put to action. As Robert Veatch puts it, the paternalistic model “takes the locus of decision-making away from the patient and places it in the hands of the professional.”18

Therefore, the paternalistic model grants the doctor complete authority to decide on behalf of his patient, on the assumption that he will use this power wisely and benevolently.19

However, the paternalistic model is troubling for two reasons. First, doctors are free to withhold important information, breach patient confidentiality, or override patient requests, even when they judge that doing so is unlikely to promote patient well-being. The paternalistic model leaves too much room for doctors to engage in behavior that is harmful, under the pretense that they are providing good care. Second, the paternalistic model justifies such actions when the doctor judges that the action promotes patient well-being. 20 Consider WITHHOLDING

PROGNOSIS. If Paul’s doctor judges that Paul is likely to live out his remaining years disengaged and unhappy if informed about his terminal status, then Paul’s doctor is permitted to withhold this information. Because of the assumptions about the distribution of expertise and the doctor’s altruism, and the fundamentality of the commitment to promote patient well-being, the

18 Veatch, “Models for Ethical Medicine”, 6. 19 Patients did have the authority to determine whether or not they would undergo the selected treatment. The majority opinion in Schloendorff affirmed that doctors who subjected patients to treatment without explicit agreement could be found liable for battery. However, this is distinct from the claim that patients possess authority over the decision. For discussion of the evolution of the legal concept of informed consent, see Faden and Beauchamp, History and Theory, 116-143. 20 Buchanan cites an infamous study by Donald Oken that purportedly revealed the widespread tendency of doctors to withhold diagnoses from cancer patients, much like WITHHOLDING PROGNOSIS. Buchanan, “Medical Paternalism”, 372-375.

9 paternalistic model grants Paul’s doctor the authority to act according to his judgment about what will best achieve the aims of medicine. If doctors judge that deception, coercion, or strategic omission best serves the patient’s interests, then these actions are justified. Therefore, we not only can foresee that doctors may abuse their authority under the guise of helping patients; in cases where doctors earnestly judge that coercing, deceiving, or manipulating a patient is most likely to promote patient well-being, doctors are justified in doing so on the paternalistic model.

By awarding decisional authority solely to the doctor, the paternalistic model of the doctor-patient relationship renders the patient vulnerable to deception, coercion, and manipulation. Thus the true target of the 20th century revolution in medical ethics was not merely the behaviors themselves, but the doctor-patient relationship that rendered permissible such behaviors. Avoiding the permissibility of deceiving and coercing patients requires abandoning the paternalistic model of the doctor-patient relationship. Therefore, the 20th century rejection of medical paternalism amounted to a rejection of an objectionable model of doctor-patient interaction. 21

II. The Rise of Self-Determination

By demonstrating that certain objectionable behaviors were symptoms of a doctor-patient relationship that awarded doctors complete decisional authority, 20th century ethicists identified a serious problem with doctor-patient interaction. In this section, I explain the three main lines of

21 Laurence McCullough disputes this characterization of the historical doctor-patient relationship. See Laurence B. McCullough, “Was Bioethics Founded on Historical and Conceptual Mistakes About Medical Paternalism?” Bioethics 25, no. 2 (February 2011): 66-74. While the narrative of the doctor-patient relationship as unenlightened and authoritarian until 1914 is extremely simplistic, there is good historical evidence that the 20th century rejection of the paternalistic model is responding to real trends in medical practice that can be traced to the development of specific professional codes and practices in mid-19th century American medicine. For a historical overview of medical ethics from 1847-1912 and the vision of physician-layperson relations that emerged from a concerted effort to establish a single, dominant medical tradition in the United States, see Donald E. Konold, A History of American Medical Ethics 1847-1912, (New York: Department of History at the University of Wisconsin, 1962), 43-55, 68-75.

10 objection to the paternalistic model, and I show how the appeal to self-determination has gained the most traction of the three.

First, some have objected that the paternalistic model relies on unfounded assumptions about the doctor’s beneficence. We should never assume a doctor will be beneficent; stripping doctors of sole decisional authority is necessary to protect patients from abuse. If doctors retain this unilateral practical authority, the patient is vulnerable to harm.22 This real and felt vulnerability also has the unfortunate effect of hindering patient trust (and broader social trust) in doctors.23 Thus, contrary to the paternalistic model, we cannot merely assume that doctors will be beneficent; correcting for this requires that we involve patients in decisions about their care.

Second, we should also reject the assumption that doctors are necessarily in a superior epistemic position than patients to make treatment decisions. Some argue that even if doctors are well-intentioned, there is more uncertainty about key medical questions than the paternalistic model acknowledges.24 Our knowledge about health and the body has expanded dramatically over the past century, but diagnosis, prognosis, and treatment still require guesswork and judgment based on incomplete knowledge.25 Such uncertainty implies that doctors are generally better judges than patients about what will be medically best, but that they are highly fallible.

Therefore, the expertise and training doctors possess is important, but it is not adequate grounds for awarding doctors complete decisional authority.

22 Neil C. Manson and Onora O’Neill, Rethinking Informed Consent in Bioethics, (Cambridge: Cambridge University Press, 2007), 72-77. 23 Onora O’Neill, Autonomy and Trust in Bioethics, (Cambridge: Cambridge University Press, 2003): 145-154. 24 Katz, Silent World, 128; Robert Veatch, Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge, (Oxford: Oxford University Press, 2009), 37-41. 25 Kathryn Montgomery, How Doctors Think: Clinical Judgment and the Practice of Medicine, (New York: Oxford University Press, 2006), 28-41.

11 More importantly, the paternalistic model has an overly narrow view of what constitutes relevant expertise. For example, treatment decisions involve judgments about trade-offs in the patient’s personal life and about the degree of burden a “cost” might impose.26 Despite their medical expertise and training, doctors are not epistemically better positioned than patients to make judgments about these kinds of considerations. The paternalist simply ignores the extent to which treatment decisions depend on non-medical information and judgments.27

Furthermore, patients are epistemically well-positioned to make judgments about tradeoffs, benefits, and costs of treatments in conjunction with other elements of their lives.28

Such matters concern what patients value overall, and how considerations about their health integrate with other concerns and cares they have. The paternalistic model makes no space for patient contributions to these questions; it assumes that ‘well-being’ is exhausted by considerations about health, and that the doctor is best positioned to make decisions about health.

Therefore, the paternalistic model arbitrarily restricts what counts as relevant considerations and expertise.

While the above arguments are largely correct, they are unsatisfactory as a thorough rejection of the paternalistic model. These two lines of objection depend on a contingent connection between distribution of authority and undesirable outcomes. There is nothing intrinsically disvaluable about the paternalistic model according to the above objections; if

26 Veatch, Patient, Heal Thyself, 33-42. 27 Katz, Silent World, 96; Veatch, Patient, Heal Thyself, 35-37. 28 Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision-Making, (Cambridge: Cambridge University Press, 1989), 29-36. This echoes Mill’s absolutist rejection of paternalistic interference with rational adult humans on the grounds of their expertise with respect to their well-being. “…while with respect to his own feelings and circumstances the most ordinary man or woman has means of knowledge immeasurably surpassing those that can be possessed by anyone else.” J.S. Mill, On Liberty, (1859; repr., Indianapolis: Hackett Publishing Company, 1978), 74.

12 negative outcomes could be avoided without abandoning the paternalistic model, then there would be no reason to reject the paternalistic model. Nor is the paternalistic model in principle incompatible with the improvement of these outcomes; allocating decisional authority exclusively to the doctor does not require overlooking or impeding means of preventing doctor abuse, or of incorporating information to which the patient has privileged access.29

Consequently, the above arguments for rejecting the paternalistic model are successful only if reassigning decisional authority is the best way to promote these outcomes.

More crucially, the above arguments do not address the normative foundation for medical decision-making. Appeals to protection and expertise are compatible with the claim that the sole moral consideration is the promotion and protection of patient well-being. Pellegrino, as a noteworthy example of this kind of view, states, “Do good and avoid evil is the primum principium of all ethics. All ethical systems, medical ethics included, must begin with this dictum.”30 However, in his account of what the pursuit of the good in the clinical encounter demands, Pellegrino echoes the worries about the narrowness of expertise as envisioned by the paternalistic model. “The optimal end of healing is the good of the whole person--physical, emotional, and spiritual. The physician, manifestly, is no expert in every dimension”31, and later,

“Physicians who ignore the patient’s notion of the good violate the good of the patient as a self- determining rational being.”32 It is perfectly coherent for those who level the above criticisms to

29 For example, we could implement institutional mechanisms like disclosure forms and rigorous third-party checks in order to ensure that doctors act only in ways that promote the patient’s avowed interests and that doctors appropriately track the patient’s avowed interests. In Chapter 4, I consider this precise approach to medical decision- making 30 Edmund D. Pellegrino, “The Internal Morality of Clinical Medicine: A Paradigm for the Ethics of the Helping and Healing Professions”, Journal of Medicine and Philosophy 26, no. 6 (2001): 577. 31 Pellegrino, “Internal Morality of Clinical Medicine”, 569. 32 Pellegrino, “Internal Morality of Clinical Medicine”, 570.

13 agree with the paternalistic model on the proper normative foundation for ethical medical decision-making; however, like Pellegrino, they may simply differ in their judgment of whether allocating complete decisional authority to the physician is most likely to promote and protect patient well-being.

The failure to address the normative foundation of the paternalistic model is unsatisfactory because it fails to capture the sense that patients have a strong interest in participating in and controlling the outcome of medical decision-making, independent of the resulting effect on their well-being.33 Treatments affect not only a patient’s health; they have implications for patients’ lives more generally. Treatments affect social interaction, work performance, and leisure pursuits. They impact the patient in a stronger and more direct manner than any other person. And even if the decision made ends up not promoting their overall well- being, there is something important about having control over such influential decisions.

Therefore, even if the doctor turns out to be a trusted, altruistic expert, we should still not assign them authority over treatment decisions.34 This intuition is the basis for the dominant anti- paternalist approach: the appeal to self-determination.

‘Self-determination’ refers to the right to make decisions and pursue courses of action that are central to one’s life.35 The core idea of self-determination as an objection to the paternalistic model is regularly credited to Justice Cardozo’s majority opinion in Schloendorff v.

Society of New York Hospital, in which he stated: “Every human being of adult years and sound

33 Jessica Flanigan, “Three Arguments Against Prescription Requirements”, Journal of Medical Ethics 38, no. 10 (2012): 2. 34 Joseph Raz’s “service conception” of authority is a notable contrast to this view. He explicitly endorses a connection between expertise and authority. Joseph Raz, The Morality of Freedom, (Oxford: Clarendon Press, 1986), 53-57. 35 Faden and Beauchamp, History and Theory, 9; Buchanan and Brock, Deciding for Others, 36.

14 mind has a right to determine what shall be done with his own body…”36 However, Cardozo’s opinion merely asserts the existence of such a right; it does not inform us why we ought to recognize such a right and what respecting this right demands. There are two common approaches to explaining why the right of self-determination is important to recognize.

The first approach focuses on the value of self-determination, divorced from the quality of resulting decisions. Even in cases where the actual decisions a patient makes risks harm to herself, there is still significant value in individuals making these central life decisions. Making choices regarding one’s life gives one a sense of ownership over the choice, a sense of ownership that might be absent were another person to make the choice on one’s own behalf.37 Making one’s own choices heightens one’s sense of agency and control over one’s own life. Making decisions is also important for improving one’s ability to make decisions.38 The capacity to choose for oneself requires development; if doctors continually deny patients the opportunity to make their own treatment decisions, they will never be in position to take control over a central domain of their life—their health.39 Finally, most individuals want to make their own decisions.40

Individual acts of choosing are central to the broader project of shaping and constructing one’s own life. Since health tends to be an important part of one’s life, allowing individuals to make health-related decisions is necessary in order to enable people to continue shaping their lives as

36 Schloendorff v. Society of New York Hospitals, 211 N.Y. 125, 126, 105 N.E. 92, 93 (1914) 37 Buchanan and Brock, Deciding for Others, 37-38. 38 Mill, On Liberty, 55-56. 39 Katz, Silent World, 104-129. 40 “Even when we believe that others may be able to decide for us better than we ourselves can, we often prefer to decide for ourselves.” Buchanan and Brock, Deciding for Others, 38.

15 they see fit. Thus patients must have the right to make their own treatment decisions in order to protect and promote self-determination.41

The second approach focuses on the special status of health as a domain of decision- making. Generally, health concerns one’s own body and mind. While this can indirectly affect others, the only individual who is directly concerned with the state of his body and mind is that person. No one else is directly harmed by the decisions I make concerning my health.42

Consequently, this is a domain I rightfully control; I am sovereign over my health.43

According to the appeal to sovereignty, one has the right to make decisions concerning one’s body simply in virtue of being competent to exercise certain rational capacities. As Faden and Beauchamp state, “to respect an autonomous agent is to recognize with due appreciation that person’s capacities and perspective, including his or her right to hold certain views, to make certain choices, and to take certain actions based on personal values and beliefs.”44 The “rational capacities” in question vary depending on the account. Some accounts are concerned exclusively with capacities for voluntariness and comprehension. 45 Other accounts of the rational capacities include responsiveness to rational requirements that govern our belief and intention-formation

41 On this approach, there will be cases in which an individual’s particular choice might justifiably be overridden because it frustrates or undermines one’s future ability to engage in life-shaping activity. For example, selling oneself into slavery, or deliberately destroying one’s cognitive capacities. However, this approach recognizes local acts of choice and action as important insofar as these activities are constitutive of “shaping a life”. 42 Of course I can incur certain obligations to others in virtue of voluntarily entering relationships that entail certain obligations, making promises to others, or consenting to transfer decision-making authority to another party. However, these are all voluntary acts that modify the normative landscape; absent such voluntary acts, no one is entitled to infringe on decisions in this domain. 43 Joel Feinberg, The Moral Limits of the Criminal Law, Vol. 3: Harm to Self (New York: Oxford University Press, 1989), 47-62. 44 Faden and Beauchamp, History and Theory, 8. 45 For Faden and Beauchamp, the requisite capacities are (1) the capacity to form intentions and act intentionally; (2) the capacity to understand relevant considerations to the decision to a certain degree; and (3) the capacity to intend and act in a substantially independent manner. Faden and Beauchamp, History and Theory, 241-262.

16 processes.46 Some accounts include an “authenticity” condition, where an individual must be able to harmonize first-order choices with second-order values or desires.47 Whatever the relevant rational capacities are, the sovereignty approach states that their presence alone is sufficient to establish the patient’s decisional authority. Thus patients have the right to make medical decisions in virtue of a basic entitlement to make decisions about matters that directly affect only the patient.

It is beyond the scope of this dissertation to adjudicate the successes and failures of these arguments for self-determination on their own terms. Moreover, it is common for various amalgams of these arguments appear as a brief justification for an anti-paternalist approach to medical decision-making. However, these two arguments share a common conclusion. The paternalistic model is wrong because it fails to recognize that medical decisions are the kinds of decisions that properly are under the purview of the patient. Therefore, the commitment to respect the patient’s right of self-determination itself takes a stand on who has decisional authority; it implies that patients are entitled to make treatment decisions.

Given this entitlement, the commitment to respect the patient’s right of self-determination is traditionally interpreted to demand that doctors refrain from interfering with patients’ decisions and deliberation about their care, and that doctors foster and promote autonomous decision-making. From here on out, when I refer to ‘the commitment to respect the patient’s

46 Onora O’Neill discusses rational requirements and their role in the universal law formulation of the Categorical Imperative. Examples of rational requirements include intrapersonal consistency of belief and of intention, and means-end coherence of intentions. Onora O’Neill, “Consistency in Action” in Constructions of Reason: Exploring Kant’s Practical Philosophy, (Cambridge: Cambridge University Press, 1989), 81-104. 47 Harry Frankfurt, “Freedom of the Will and the Concept of a Person”, The Journal of Philosophy 68, no. 1 (January 1971), 5-20; Gerald Dworkin, “The Nature of Autonomy” in The Theory and Practice of Autonomy, (Cambridge: Cambridge University Press, 1988), 15-20. Note that Frankfurt and Dworkin are not necessarily defending the sovereignty view, which is fundamentally a position about distribution of decisional authority. Rather Frankfurt and Dworkin have introduced capacities that might be included among the conditions required for sovereignty.

17 right of self-determination’, I refer to this traditional interpretation of the commitment.48 “To respect autonomous agents is to acknowledge their right to hold views, to make choices, and to take actions based on their values and beliefs.”49 Consequently, the right of self-determination secures for the patient protection from the doctor’s unwarranted imposition on and intrusion into medical decision-making, including the deceptive and coercive behaviors endemic to the paternalistic model.

The shift in medical ethics over the past several decades has not focused exclusively on the correction of certain assumptions about the doctor-patient relationship. The arguments regarding the foolishness of presuming altruism and the narrowness of the paternalist conception of ‘expertise’ have been key to the revision of the doctor-patient relationship, but all these arguments generally accompany a rejection of the paternalist’s moral vision. Therefore, the introduction of the commitment to respect the patient’s right of self-determination into the normative foundation for ethical medical decision-making has been central to the rejection of the paternalistic model in favor of an alternative doctor-patient relationship.

III. The Informative Model

Respect for the patient’s right of self-determination demands that we recognize that patients have a right to make decisions regarding actions that directly impact only their lives.

This commitment shifts the presumption for decisional authority. According to the paternalistic model, doctors rightfully control medical decision-making; the burden of proof is on those who would assign control away from the doctor. The introduction of the commitment to respect the

48 It is by no means the only interpretation of what respect for the patient’s right of self-determination demands, but this interpretation is considered typical and has been extremely influential in contemporary medical ethics. 49 Beauchamp and Childress, Principles of Biomedical Ethics, 106. Note that they treat ‘autonomy’ as the moral equivalent of ‘self-determination’, which they reserve for the legal context.

18 patient’s right of self-determination, however, awards the patient control over medical decision- making; the burden of proof is on those who assign control away from the patient.

Note this builds the distribution of decisional authority into the normative foundation for ethical medical decision-making; the distribution of decisional authority is not a product of the normative foundation coupled with empirical assumptions about the expertise and interests of doctors and patients. Therefore, if doctors are to be included in medical decision-making, it must be demonstrated that a model that awards sole decisional authority to the patient is problematic in its own way. As we shall see, building the commitment to patients’ sole possession of decisional authority into the normative foundation is the fundamental obstacle to a true doctor- patient partnership. Before we examine this tension, however, I will explain why most ethicists and professionals have embraced the vision of a doctor-patient partnership in the first place.

The doctor-patient relationship commonly connected to prioritization of the principle of respect for patient self-determination embraces the individualism of the paternalistic model, but it inverts the roles of the doctor and patient. This account is often called the informative model.50

Patients have both the authority and the responsibility to make treatment decisions; the doctor’s role is to fill in any informational gaps and to fulfill the patient’s request.51 Just as the paternalistic model of the doctor-patient relationship emerges from a coupling of the principle of promotion of patient well-being and certain key assumptions about the doctor and patient, so does the informative model emerge from treating the principle of respect for patient self- determination as fundamental, and pairing it with distinct assumptions about the doctor and patient. Thus, as the paternalistic model presumes that the core moral imperative is to promote

50 Emanuel and Emanuel, “Four Models”, 2221. 51 Emanuel and Emanuel, “Four Models”, 2221.

19 patient well-being, the informative model presumes that the core moral imperative is to respect the patient’s right of self-determination.

But the informative model also makes certain assumptions about the distribution of expertise. Doctors are experts with respect to “facts”; their expertise concerns the body, health and disease, and medicine. However, one of the anti-paternalist insights is that treatment decisions concern a broader scope of values and considerations than recognized by the paternalistic model. The informative model presumes that patients are expert with respect to

“values” present in treatment decisions; doctors lack any insight into this matter. Therefore, the informative model posits a sharp division of labor between the doctor and patient; and given that patients possess both expertise and entitlement to make treatment decisions, the only role for doctors is to give patients the medical-related information they need to make their decision.52

Even in the enthusiasm over the importance of respect for the patient’s right of self- determination, few have endorsed the informative model of the doctor-patient relationship, and for good reason. As envisioned by professionals and ethicists, the informative model fails as an adequate model of doctor-patient interaction for similar reasons as the paternalistic model; the assumptions about the roles of doctors and patients are flawed, and the normative foundation is unacceptable in capturing an account of the ideal doctor-patient relationship.

The first criticism argues that the informative model fundamentally overlooks the way in which medicine is a value-based practice.53 The informative model typically presupposes that there is a clean divide between “facts” and “values”; and that doctors are capable of issuing

52 Emanuel and Emanuel, “Four Models”, 2221; Veatch, “Models for Ethical Medicine”, 5-6. 53 Veatch, “Models for Ethical Medicine”, 5.; Julian Savulescu, “Rational Non-Interventional Paternalism: Why Doctors Ought to Make Judgments About What Is Best for Their Patients”, Journal of Medical Ethics 21, no. 6, (December 1995): 328-329.

20 value-free judgments about “relevant” diagnostic information, “available” treatments, and “risks and benefits”. However, all of these judgments reflect certain values. Information is “relevant” only insofar as the information is deemed important for making an adequately informed decision.

“Available” treatments are determined via reference to standard-of-care, which consists of evaluative judgments about the set of preferred courses of action. Describing some effect of a treatment as a “risk” presupposes an evaluative judgment about the undesirability of the effect.54

All of these reveal the extent to which the “facts” provided by doctors are actually deeply value- laden. There is no value-free role for doctors to play in medicine. Consequently, the informative model creates for the doctor an impossible role; it relies on a mischaracterization of medical practice.55

The second criticism argues that the informative model is overly demanding of patients and disregards the extent to which patients want doctors to be active participants in decision- making. Empirical studies have demonstrated that patients frequently do not want to be tasked with making their own decisions; reasons vary from religious or cultural grounds to exhaustion and stress from illness or ailments.56 But it is common to suggest that the informative model prevents the doctor from participating in medical decision-making as much as either party wants.

“...the informative physician is proscribed from giving a recommendation for fear of imposing his or her will and thereby competing for the decision-making control that has been given to the patient.”57 Insofar as one believes that uncoerced and reasonable acts of deference are morally

54 Veatch, “Models for Ethical Medicine”, 5. 55 Savulescu, “Rational Non-Interventional Paternalism”, 328-329. 56 Charles et al. “Shared Decision-Making”, 683-684. 57 Emanuel and Emanuel, “Four Models”, 2224.

21 permissible, one has reason to reject the informative model.58 On Beauchamp and Childress’ view, for example, the commitment to respect the patient’s right of self-determination generates

“a fundamental obligation…to ensure that patients have the right to choose, as well as the right to accept or to decline information. Forced information and forced choice [my emphasis] are usually inconsistent with this obligation.”59 The principle of respect for the patient’s right of self- determination, then, specifies only a right to choose, not a duty to choose. The informative model assigns excessive decision-making responsibility to patients, thus imposing too much of a burden on them.

The third criticism argues that the informative model conflates a rejection of the paternalistic model with a rejection of the importance of promoting patient well-being. Even if the “facts-provider” role must be modified to incorporate the kinds of inescapable value judgments stressed in the first criticism, the informative model severely restricts the extent to which the doctor may try to promote the patient’s well-being. The informative model allows that the only relevant form of care for the patient’s welfare is the provision of important information and the execution of the patient’s stated preferences.60 However, doctors should be far more involved in medical decision-making than mere information provision. They should actively

58 It is unclear precisely why this criticism is so common in discussions about the informative model. I can see three possible reasons behind this criticism. First, it seems to be bound up in the corresponding idea of patients as “consumers”; the expectation is that as a consumer, it is beyond the scope of the service provider to tell the consumer what to do. Consumers not only have the authority to make choices; they also have the responsibility to make choices. Second, insofar as the informative model is generally seen as an inversion of the paternalistic model, there may also be an implicit assumption that decision-making authority is assigned on the basis of expertise. Third, the worry that the informative model is overly demanding of patients might ultimately be practical. Insofar as we specify that a particular person has the authority to make a decision, this tends to inspire deference and a fear to assert oneself in decision-making, even if the individual attempts to transfer authority or to consult others. In the following chapter, I will develop the more realistic account of the doctor-patient relationship that emerges from awarding the patient sole decisional authority. 59 Beauchamp and Childress, Principles of Biomedical Ethics, 110. 60 Emanuel and Emanuel, “Four Models”, 2221.

22 engage the patient in conversation about their values and preferences, ask questions regarding the patients’ preferred options, and even recommend and defend their own preferred courses of action.61 All of these activities are a meaningful part of providing good care for patients. But the informative model precludes all of these courses of action; if the doctor tries to engage the patient in these ways, the doctor intrudes on a matter over which he has no say.62 Consequently, the informative model is objectionable not only in its assumptions about the roles of doctors and patients, but also in its deprioritization of the doctor’s commitment to promote patient well- being.

While all three of these criticisms have motivated the rejection of the informative model, the last seems most pressing. The informative model, as understood above, creates a relationship in which doctors are far more disengaged from treatment decision-making than professionals, ethicists, and patients desire. As a result, most medical ethicists who have developed “anti- paternalistic” models of the doctor-patient relationship have rejected the idea that either party should be able to be excluded from medical decision-making. Doctors have the expertise, training, and (often) experience to issue sound judgments about whether certain treatments are likely to be effective in realizing good medical outcomes, and they have valuable insight into what would be a good decision. This role for the doctor should not be lost. However, it is unacceptable for this role to result in patients being excluded from medical decision-making.

Because of the importance of respecting the patient’s right of self-determination, patients should

61 Emanuel and Emanuel, “Four Models”, 2224-2226. See also Thomas Huddle, “Putting Patient Autonomy in its Place; Professional Norm-Guided Decision-Making”, Kennedy Institute of Ethics Journal 26, no. 4 (2016): 457-482; Timothy E. Quill and Howard Brody, “Physician Recommendations and Patient Autonomy: Finding a Balance between Physician Power and Patient Choice”, Annals of Internal Medicine 125 (1996): 763-769; Savulescu, “Rational Non-Interventional Paternalism”, 327-331. 62 Savulescu, “Rational Non-Interventional Paternalism”, 330.

23 be elevated alongside doctors in medical decision-making. The best way to move forward from the abandonment of the paternalistic model, therefore, is to conceive of the doctor-patient relationship as a partnership.

IV. The Doctor-Patient Partnership

The paternalistic model of medical decision-making is unacceptable because it treats the promotion of patient well-being as the dominant moral consideration. This renders patients vulnerable to exclusion from participating in and making decisions that they have a strong interest in having control over, even where the resulting decisions may not best promote their overall well-being. Attempting to capture this interest has led to consensus that patients have the right to make medical decisions, in virtue of their right of self-determination. However, a revision to the doctor-patient relationship that takes respect for the patient’s right of self- determination as paramount will threaten to exclude the doctor from participating in medical decision-making. The informative model overcompensates for medical paternalism in its severe weakening of the doctor’s commitment to promote patient well-being. What is required, then, is a “middle way”: an account that does justice to both the value of the doctor’s commitment to promote patient well-being, but without excluding patients from decisions about their own care.

This has led to the consensus within medical ethics that a partnership between the doctor and patient is the ideal relationship.

Most discussion of the doctor-patient partnership is found through the literature on shared decision-making.63 Since its inception, shared decision-making has been billed as the expression

63 Charles et al. “Shared Decision-Making”, 685-689; Cathy Charles, Tim Whelan, and Amiram Gafni, “What Do We Mean by Partnership in Making Decisions About Treatment?” BMJ: British Medical Journal 319, no. 7212 (September 1999): 780-782.

24 of this “middle way” between doctor paternalism and patient independence.64 In motivating the need for shared decision-making, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research states:

Both [the paternalistic and informative models] attempt to vest exclusive moral agency, ethical wisdom, and decisionmaking authority on one side of the relationship, while assigning the other side a dependent role. In the view of the Commission, neither extreme adequately reflects the current nature and needs of health care…In this Report, the Commission attempts to shift the terms of the discussion toward how to foster a relationship between patients and professionals characterized by mutual participation and respect and shared decisionmaking. The Commission believes such a shift in focus will do better justice to the realities of health care and to the ethical values underlying the informed consent doctrine.65

Shared decision-making, therefore, is the process by which doctors and patients in a partnership make decisions. In the context of the report, shared decision-making appears in conjunction with terms like “mutual participation”66, and “mutual satisfaction”67. These have remained common to current discussions about shared decision-making, but they have not been unpacked satisfactorily.68 I will suggest the following accounts for both concepts, based both on discussions within the shared decision-making literature, and based on the guiding assumption that the partnership model is supposed to serve as a “middle way” between paternalism and patient independence. These serve as core commitments for the ‘partnership model’ of the doctor-patient relationship.

64 Lars Sandman and Christian Munthe, “Shared Decision-Making, Paternalism, and Patient Choice”, Health Care Analysis 18, no. 1 (March 2010): 60-84. 65 President’s Commission, Making Health Care Decisions, 36. 66 “Ethically valid consent is a process of shared decision-making based upon mutual respect and participation [my emphasis], not a ritual to be equated with reciting the contents of a form that details the risks of particular treatments.” President’s Commission, Making Health Care Decisions, 2. 67 “As a result, [the courts] have missed the opportunity to move toward what is needed: ‘a new and unaccustomed dialogue between doctors and their patients…in which both, appreciative of their respective inequalities, make a genuine effort to voice and clarify their uncertainties and then to arrive at a mutually satisfactory course of action [my emphasis].” President’s Commission, Making Health Care Decisions, 30. 68 Gregory Makoul and Marla L. Clayman, “An Integrative Model of Shared Decision-Making in Medical Encounters”, Patient Education and Counseling 60 (2005): 301-312.

25 First, ‘mutual satisfaction’ with a decision is the partnership’s distinctive criteria of evaluation for a decision. The higher the decision ranks among available options for both parties, the better it is by the lights of mutual satisfaction. A decision is ideal only if both the doctor and patient, given their respective value priorities, would select that choice above all others. If a particular treatment decision is most likely to achieve the doctor’s and the patient’s goals for the patient, then that is the best decision by the lights of mutual satisfaction.

Second, ‘mutual participation’ articulates a procedural norm for the decision-making process itself. In the doctor-patient partnership, neither party has the authority to unilaterally terminate deliberation. Given that both doctor and patient are indispensable to the decision- making process, it would be unacceptable if either party could simply terminate deliberation when she felt she had settled the question of what to do for herself. Mutual participation, then, captures the rejection of individual decision-making characteristic of both the paternalistic and informative models.

These parameters affiliated with shared decision-making provide the contours for the partnership model as a distinctive understanding of the doctor-patient relationship. Unlike either the paternalistic or the informative model, doctors and patients are both actively engaged in deliberation about the patient’s care. On an ideal interaction, doctors and patients exchange information that is relevant to the decision; they ask or answer clarificatory questions about the information provided; and they deliberate together to try and achieve a decision that is satisfactory to both parties. Such deliberation is not simply a matter of clarifying and interpreting preferences; it may also involve challenging each other’s preferences, commitments, and

26 decisions.69 Ultimately, doctors must defer to patients about their decisions; this is required by the commitment to respect the patient’s right of self-determination. However, it is assumed that this does not preclude doctors from trying to persuade patients to revise their decisions in cases of disagreement.

“Far from frustrating personal autonomy, rational discussion with those who hold different values promotes autonomy.” 70

“Freedom and control over medical decisions alone do not constitute patient autonomy. Autonomy requires that individuals critically assess their own values and preferences; determine whether they are desirable; affirm, upon reflection, these values as ones that should justify their actions; and then be free to initiate action to realize these values. The process of deliberation…is essential for realizing patient autonomy in this way.”71

“However, autonomous medical choices are usually enhanced rather than undermined by the input and support of a well-informed physician. Only after a dialogue in which physician and patient aim to influence each other might the patient fully appreciate the medical possibilities.”72

Thus this initial approach to partnership is attractive insofar as it promises to achieve the “third way” of treatment decision-making: a compromise between the legitimate desire of doctors to try and ensure that resulting decisions are beneficial to patient health, and the importance of ensuring that patients have control over decisions about their care.

V. Partnership vs. Self-Determination

The partnership model envisions a collaborative process in which initial decisions or commitments may be challenged; the mutual entitlement to challenge the other party in this way is important specifically because it gives each party the chance to push for a decision that is more conducive to their respective goals in medical decision-making. Moreover, it protects each party

69 While they do not refer to it as a partnership or as a foundation for shared decision-making, Emanuel and Emanuel’s “deliberative model” is extremely similar to the interaction described above and has been influential in the literature on shared decision-making. For the “deliberative model” and their defense of it, see Emanuel and Emanuel, “Four Models”, 2222, 2225-2226. 70 Julian Savulescu, “Liberal Rationalism and Medical Decision-Making”, Bioethics 11, no. 2 (1997): 126. 71 Emanuel and Emanuel, “Four Models”, 2225. 72 Quill and Brody, “Physician Recommendations and Patient Autonomy”, 765.

27 from being excluded from the decision-making process, should one party come in to the decision-making process with their mind made up. Neither party has the authority to make treatment decisions alone. Avoiding exclusion of either party and ensuring that both parties are empowered to push for different decisions is crucial to the partnership model.

However, there is a prima facie tension between the above vision of the doctor-patient partnership, and the normative foundation upon which it rests. The partnership model has no problem explaining why a doctor who excludes patients from deliberation acts wrongly. Since the commitment to respect the patient’s right to self-determination implies that treatment decisions are ones the patient has the right to make, doctors who exclude patients from the decision-making process are depriving them of the ability to make decisions they are entitled to make. This is obviously impermissible by the lights of the partnership model, in its commitment to respect the patient’s right to self-determination.

Yet the commitment to respect the patient’s right of self-determination appears wholly compatible with the patient choosing to exclude the doctor from participating in treatment decision-making. Specifically, there are cases where patients and doctors will reasonably disagree on the best course of action. In cases where the patient has carefully considered the options regarding available treatments and reached a decision about her care, it seems like the commitment to respect the patient’s right of self-determination implies that the patient has the right to terminate any further deliberation. The doctor has no right to refuse to act on the patient’s decision for the sake of attempting to convince the patient to choose differently.

In the abstract this might seem perfectly fine. However, there are cases in which the patient’s chosen course of action may be inadvisably risky, or may involve likely consequences

28 that most medical professionals would deem good to avoid. Thus the doctor’s disagreement tracks what is medically advisable; nonetheless, the patient seems to be justified in preventing the doctor from pushing back on the patient’s choice and engaging them in further dialogue. To see this, consider the following case:

In ADENOMA, Phoebe has reached a clear, informed, and competent decision regarding her treatment, and she is ready to act on it. Despite this, the partnership model as envisioned above seems to imply that Ellen is entitled to refuse to defer to Phoebe’s decision, specifically for the sake of trying to persuade Phoebe to reconsider her rejection of medication. Yet it is unclear why

Ellen is entitled to do so. While she has a commitment to try and promote Phoebe’s well-being,

Phoebe’s right of self-determination implies that treatment decisions are hers to make. That is,

Phoebe is authoritative with respect to decisions regarding her care.

To capture the sense in which Phoebe’s decision is authoritative, I draw on Groll’s account of the will as being structurally decisive.73 When we treat one’s will as authoritative, we do not treat their decision to φ as simply giving a particularly weighty reason to φ, a reason that

73 Daniel Groll, “Paternalism, Respect, and the Will” Ethics 122, no. 4 (July 2012): 692-720.

29 is weighed in accord with all other reasons for and against φ-ing. Rather, we take the decision to silence both competing and supportive reasons. The authority’s decision is preemptive; it does not add to the set of reasons, but supplants them.74 This captures precisely the idea behind

Phoebe having a right to make decisions regarding her care; she has the authority to settle how the doctor and patient will proceed, in virtue of her right of self-determination.

Given that Phoebe has authority over the decision, in virtue of her right of self- determination, it is unclear why Ellen would be entitled to disregard Phoebe’s decision in favor of continuing deliberation and trying to persuade Phoebe to change her mind. Yet the partnership model seems to imply that Ellen is permitted to do precisely that; this entitlement is necessary in order to protect the doctor’s ability to push for decisions that are more satisfactory to her. Thus

ADENOMA reveals a serious tension between the vision of the partnership model as a relationship of open deliberation and persuasion, and a normative foundation that includes the commitment to respect the patient’s right of self-determination.

VI. What Does Achieving Partnership Take?

As we have seen, the partnership model seems to be a superior account of the doctor- patient relationship than either the paternalistic or informative models. Yet a core feature of the partnership model—the entitlement to try and persuade the other party to revise their decisions in cases of conflict—is in tension with the commitment to respect the patient’s right of self- determination. This is made salient in a case like ADENOMA, where the patient has independently reached a competent and informed decision. Thus the contemporary ideal of

74 Groll notes his debt here to Raz’s conception of authority as issuing an exclusionary reason. However, the idea of ‘silencing’ also applies to the reasons in support of the action. This is connected to Raz’s idea of authority as issuing a preemptive reason for action. For Raz’s account of an exclusionary reason, see Joseph Raz, Practical Reasons and Norms, 3rd ed. (New York: Oxford, 1999), 35-48. For Raz’s account of a preemptive reason, see Raz, Morality of Freedom, 38-48, 57-62.

30 doctor-patient interaction appears to rest unsteadily upon the contemporary normative foundation of ethical medical decision-making.

However, one might be skeptical that I have identified any tension at all. Some proponents of the doctor-patient partnership may be inclined to say that doctors are not entitled to push back on patient decisions in cases like ADENOMA, but that we should be comfortable with this limitation on the doctor’s entitlement. Other proponents of the doctor-patient partnership might be inclined to say that doctors are entitled to push back in cases like

ADENOMA, but that it is easy to show that the conflict between this entitlement and the commitment to respect the patient’s right of self-determination is illusory. Thus the “tension” revealed by a case like ADENOMA is no real threat to the coherence of the partnership model with the right of self-determination.

In Chapter 2, I argue that such confidence in the ability to resolve this tension is unwarranted. First, proponents of the partnership model should not be willing to limit doctors’ entitlement to push back on patient decisions at cases like ADENOMA. There are cases that involve significantly more controversial decisions in which persuasion seems clearly appropriate, yet which appear to share the same normative properties as ADENOMA. Thus proponents of the partnership model should instead opt to try and dissolve the tension between the doctor’s attempt to persuade the patient to revise her decision and the commitment to respect her right to self- determination. I then argue that the strategies regularly employed to dissolve this kind of tension do not successfully demonstrate why doctors in cases like ADENOMA are entitled to try and persuade patients to revise their decisions. Therefore, the incompatibility between the partnership

31 model and the commitment to respect the patient’s right of self-determination runs deeper than has generally been acknowledged by proponents of the doctor-patient partnership.

The failure to resolve this tension lays bare the source of the conflict between the ideal vision of partnership and the commitment to respect the patient’s right of self-determination. The partnership model treats medical decisions as a shared project between doctors and patients— that is, decisional authority is shared. This conflicts with a commitment to respect the patient’s right of self-determination, which treats medical decisions as up to the patient. Thus the partnership model and the commitment to respect the patient’s right of self-determination are irreconcilable; we must make a decision between abandoning the partnership model, or abandoning the commitment to respect the patient’s right of self-determination as a part of the normative foundation for medical decision-making.

In Chapter 3, I defend the controversial resolution to this tension. Given that embracing the partnership model of medical decision-making requires abandoning the commitment to respect the patient’s right of self-determination, it is likely that many will endorse abandoning the partnership model instead. I argue that the partnership model is worth preserving, however, because it enables the doctor to function fully as a patient health advocate. The entitlement to try and persuade patients to revise decisions regarding their care, even when patients have reached competent and informed decisions that reflect their current priorities, is important for protecting patient health from being devalued. By abandoning the partnership model and instead embracing an account of the doctor-patient relationship that requires that persuasion be constrained by the commitment to respect the patient’s right of self-determination, we lose out on a key dimension of this valuable social role.

32 By embracing the partnership model, however, we abandon the commitment to respect the patient’s right of self-determination. This is a substantial loss, because of the role this commitment has played in rejecting medical paternalism. An adequate defense of the partnership model must do justice to the anti-paternalist insights that emerged in the rejection of paternalism—specifically, the idea that patients are entitled to participate in and control the outcome of medical decision-making, even in cases where their participation or their decision does not promote the patient’s well-being. If the partnership model cannot preserve this insight, then this is a serious problem for the partnership model.

In Chapter 4, I offer a new account of the foundation for patient authority in medical decision-making. I argue that patients are entitled to participate in and control the outcome of medical decision-making due to an interest in not being dominated by the doctor. The patient’s right of self-determination entails that patients are protected from outside interference with their decision-making. Non-domination, by contrast, is concerned with ensuring that doctors do not possess the capacity to arbitrarily interfere with patients in the course of medical decision- making. The patient’s interest in not being dominated not only provides a compelling account of the badness of the paternalistic model; it also provides an account of why patients are entitled to directly participate in deliberation about their care and to be deferred to in cases of intractable disagreement. However, non-domination is compatible with the doctor’s enjoyment of the entitlement to try and persuade patients to revise their decisions. Thus an appeal to the patient’s interest in not being dominated can secure key anti-paternalist insights about the importance of patients being included in medical decision-making, but it does not do so at the expense of the doctor’s entitlement to participate in medical decision-making.

33 The replacement of the commitment to respect the patient’s right of self-determination with a commitment to minimize domination secures the kind of anti-paternalism that is compatible with the claim that doctors and patients share authority over medical decisions.

However, the claim that doctors and patients share authority over medical decisions requires explanation. On both the paternalistic and the informative models of medical decision-making, decisional authority resides entirely with one person. As noted above, it is commonly expressed that the partnership model represents a “middle way” between these two extremes. But how exactly can authority over a decision be shared?

In Chapter 5, I take up the question of how to share decisional authority in such a way that the vision of the doctor-patient partnership can be achieved. It has frequently been assumed that the “middle way” talk is literal; shared decisional authority just is the authority over decisions enjoyed on either the paternalistic or the informative models, but distributed between both parties. I consider two accounts of decisional authority that often underlie the paternalistic and the patient choice models: the authority to veto a course of action, and the authority to settle questions that are within one’s area of expertise. I demonstrate that, when shared, these accounts fail to secure the entitlements and obligations of the partnership model. Given this failure, I propose an alternative account of decisional authority that draws on Abraham Roth’s account of practical intersubjectivity.75 This account of decisional authority is distinctive because it awards doctors and patients the authority to reopen deliberation; this contrasts with the prior accounts’ focus on the authority to close deliberation. It is an account of this kind, I argue, that is able to secure the vision of the doctor-patient partnership.

75 Abraham Roth, “Practical Intersubjectivity” in Socializing Metaphysics: The Nature of Social Reality, ed. F. Schmitt (Lanham: Rowman and Littlefield, 2003), 65-91.

Chapter 2: Can Partnership and Self-Determination Be Reconciled?

Proponents of the doctor-patient partnership envision doctors and patients deliberating together, working to reach a decision that satisfies both the doctor and patient. The aim of medical decision-making on the partnership model is to achieve good health outcomes for the patient while minimizing negative effects on the patient’s non-health-related interests and projects. A key part of this vision involves the doctor and patient both being entitled to challenge each other’s commitments to certain courses of action. In other words, both doctors and patients are entitled to try and persuade each other to revise decisions they may reach.76 The partnership is the ideal account of the doctor-patient relationship, it is assumed, because it preserves the doctor’s commitment to promote patient well-being while upholding the commitment to respect the patient’s right of self-determination.

Yet it is unclear why the doctor would be entitled to try and persuade a patient to revise a competent and informed commitment to a course of action that is within the option set. More precisely, it is unclear why the doctor is entitled to refuse to defer to the patient’s decision for the sake of trying to persuade the patient to revise her decision. Given the commitment to respect the patient’s right of self-determination, we should generally expect doctors to defer to patients’ decisions when those decisions are non-accidental, sufficiently voluntary, and sufficiently

76 I should note that by ‘persuasion’, I refer to rational persuasion. I set aside “non-rational persuasion” (e.g. invocation of emotion, appeals to expertise, etc.), as it is highly contentious whether this violates the commitment to respect the patient’s right of self-determination. By contrast, almost everyone thinks that rational persuasion is permissible. See George Tsai, “Rational Persuasion as Paternalism” Philosophy and Public Affairs 42, no. 1 (Winter 2014): 78-112; Ryan W. Davis, “Rational Persuasion, Paternalism, and Respect”, Res Publica 23, no. 4 (November 2017): 513-522 for recent arguments against this assumption.

35 informed. The tension between the entitlement awarded to the doctor on the partnership model, and the commitment to respect the patient’s right of self-determination is highlighted in a case like ADENOMA:

The central question before proponents of the doctor-patient partnership, then, is whether doctors in positions like Ellen’s are entitled to refuse to defer to their patients, specifically in order to try to persuade their patients to revise their decisions. While the partnership model seems to imply that doctors in cases like ADENOMA would be entitled to refuse to defer for the sake of trying to persuade their patients to change their minds, the commitment to respect the patient’s right of self-determination seems to imply that she is not entitled to refuse to defer. This reveals a tension between the account of the doctor-patient partnership and its normative foundation.

Proponents of the doctor-patient partnership, however, might be skeptical about whether there is any real conflict here. There may be disagreement about which way to resolve the tension put forward by ADENOMA, but most proponents of the doctor-patient partnership will likely assume that it is easily resolved. In this chapter, I aim to show that this assumption is incorrect; by considering and rejecting a series of possible resolutions to the problem presented

36 by a case like ADENOMA, I argue that the tension between the entitlement to persuade patients to revise their decisions and the commitment to respect the patient’s right of self-determination is deeper than has been appreciated.

In section I, I differentiate the disagreement in ADENOMA from other kinds of doctor- patient disagreement that seem to be easily resolved without any compromise to the patient’s right of self-determination. Intuitions may diverge among proponents of the doctor-patient partnership about whether Ellen is entitled to try and persuade Phoebe to change her mind in

ADENOMA; many who are sympathetic to partnership might still be inclined to say that we should defer to patients in cases like ADENOMA. I then introduce a second case, which reveals the same tension between the partnership model and the patient’s right of self-determination:

MASTECTOMY: Patricia has recently been diagnosed with early-stage breast cancer in her left breast. Her doctor Dorothy believes that a lumpectomy coupled with radiation therapy is the best course of action from a medical standpoint. Patricia, however, has firmly decided that the best choice for her is a bilateral mastectomy, given her values.77 For Patricia idolizes Angelina Jolie. She finds her to be an inspiration for women everywhere, and she strives to model her life after Jolie’s. Given Jolie’s championing for “previvor” status, Patricia desires to have the bilateral mastectomy; it is a natural continuation of her pursuit to be like Jolie. Dorothy thinks that Patricia is being cavalier about the invasiveness of the bilateral mastectomy; and that Patricia is taking unnecessary risks to her health for silly reasons. Dorothy wants to try and persuade Patricia to reconsider whether the risks associated with bilateral mastectomy are worth it. But Patricia does not want to discuss alternative treatment options; she wants Dorothy to authorize the mastectomy.

This case is far more challenging; we should expect greater consensus among proponents of the doctor-patient partnership that Dorothy is entitled to try and persuade Patricia to change her mind. MASTECTOMY shows that the tension identified in the previous chapter cannot be ignored; this tension crops up regularly in cases of controversial choices.78 These are the precise

77 KA Metcalfe, "Prophylactic Bilateral Mastectomy for Breast Cancer Prevention", Journal of Women's Health 13, no. 7 (2004): 822-829.

78 Julian Savulescu, “Autonomy, The Good Life, and Controversial Choices” in The Blackwell Guide to Medical Ethics, ed. Rosamond Rhodes, Leslie P. Francis, and Anita Silvers (Oxford: Blackwell Publishing, 1997), 17-37.

37 cases in which rational persuasion is thought to be of value. Thus proponents of the doctor- patient partnership must explain why there is no tension between the doctor’s entitlement to persuade the patient in cases like MASTECTOMY, and the commitment to respect the patient’s right of self-determination.

In section II, I consider the argument that the doctor in MASTECTOMY is entitled to try and persuade the patient because prolonging deliberation does not violate the commitment to respect the patient’s right of self-determination. I argue that this strategy distorts the nature and degree of control secured by the patient’s right of self-determination. If the doctor is entitled to try and persuade the patient in MASTECTOMY, it is because the commitment to respect the patient’s right of self-determination has been overridden.

In sections III and IV, I consider two general strategies a proponent of the doctor-patient partnership might employ to show that the doctor’s intervention is justified in cases like

MASTECTOMY. First, one might argue that the doctor is justified in prolonging deliberation in order to try and promote the patient’s autonomy. Second, one might argue that the doctor is justified in prolonging deliberation in order to try and promote the patient’s well-being. I argue that neither of these approaches successfully demonstrate that the doctor in MASTECTOMY is justified in prolonging deliberation for the sake of persuasion.

In section V, I consider an argument that the entitlement to try and persuade patients to revise their decisions is itself an instance of justified paternalism; it is necessary to preserve this entitlement in order to protect the doctor’s commitment to promote patient well-being. A proponent of the doctor-patient partnership might argue that this revision is necessary in order to avoid reducing the doctor to an information provider and leaving the patient to make medical

38 decisions virtually unassisted. I argue that this fails to appreciate the flexibility of the doctor’s role on a model that prioritizes the commitment to respect the patient’s right of self- determination. Those who hope to defend the doctor-patient partnership must contend with the contractor model of the doctor-patient relationship. Insofar as the contractor model of the doctor- patient relationship is available, there is no good reason to award the doctor an entitlement to try and persuade the patient to revise their decisions, expect to achieve the desired conclusion of the partnership model.

In section VI, I conclude by restating the challenge for the doctor-patient partnership. The distinctive commitment of the doctor-patient partnership is that it treats medical decision-making as a shared project. This requires that doctors and patients share authority over treatment decisions. However, this is fundamentally at odds with the right to self-determination, which implies that medical decisions are the patient’s decisions to make. Proponents of the doctor- patient partnership, therefore, must offer a distinctive normative foundation for this account of the doctor-patient relationship; they cannot retain the dominant normative foundation of contemporary medical ethics.

I. Partnership and Disagreement

First, we should consider precisely why a case like ADENOMA seems to generate a tension between the partnership model and the commitment to respect the patient’s right of self- determination. To begin, let’s imagine Doctor Dorothy, an oncologist specializing in breast cancer. Dorothy encounters a variety of disagreements with patients in clinical encounters. But not all of them present the same difficulty as ADENOMA. Here is one easily resolved case of doctor-patient disagreement:

39 HOMEOPATHY: Paris has recently been diagnosed with early-stage breast cancer in her left breast. Her doctor Dorothy believes that a lumpectomy coupled with radiation therapy is the best course of action from a medical standpoint. However, Paris hopes to begin with an extremely “conservative” “treatment” strategy: a homeopathic tincture. She does so because her role model, Paul McCartney, is a reported advocate of homeopathic medicine.79 It is important to her to follow his recommendations with respect to major life decisions. Therefore, Paris has decided that this is the best course of action for her, and she wants to develop a treatment plan centered around homeopathy.

In HOMEOPATHY, Paris has thoroughly considered her options and arrived at a judgment about what is best for her, given her values; there is no failure of competence. However, her judgment has led her to an intervention that falls outside the bounds of medical acceptability for breast cancer treatment. Many doctors are not even legally permitted to provide homeopathic remedies80; such laws reflect a dominant judgment within the community that homeopathic remedies for serious conditions are unacceptable courses of action for achieving the goals of medical treatment.

Despite Paris’s judgment that she would like to begin her care with a homeopathic intervention, proponents of the doctor-patient partnership should have no trouble explaining why

Dorothy’s refusal to defer would not violate her commitment to respect Paris’ right of self- determination. Given that Dorothy occupies a specific institutional role, she is prevented from assenting to actions that fall outside the scope of her role. Paris is, in effect, asking Dorothy to go beyond the confines of her role and facilitate a course of action that Dorothy is not in position to provide. Thus the disagreement between Dorothy and Paris is not over whether Paris’s decision is optimal; it is a dispute over whether Paris’s decision is legitimate.

79 Rachel Roberts, “Homeopathic Remedies are ‘Nonsense and Risk Significant Harm’ say 29 European Scientific Bodies”, The Independent, 23 September 2017, https://www.independent.co.uk/news/uk/home-news/homeopathy- nonsense-risk-harm-29-european-academies-science-advisory-council-remedies-a7963786.html. Accessed 25 April 2018. 80 “Licensure in Homeopathy”, National Center for Homeopathy, http://www.homeopathycenter.org/practicing- homeopathy. Accessed April 25, 2018.

40 In HOMEOPATHY, then, there is no conflict between the commitment to respect the patient’s right of self-determination and the partnership model. Respect for the patient’s right of self-determination does not require the doctor to do whatever the patient requests of her. Rather, the commitment to respect the patient’s right of self-determination operates within a specific institutional context—the medical institution. Institutional or professional commitments constrain the doctor’s authority to act on patient requests. Of course, an illegitimate request does not license any and all responses—Dorothy is not permitted to try and deceive Paris into believing that chemotherapy is a form of homeopathic treatment—but the doctor is certainly permitted to refuse the patient’s request and to try and persuade her to consider an alternative course of action. Thus Dorothy’s pushback is easily justified in HOMEOPATHY. Partnership taken with self-determination, then, can accommodate one kind of doctor-patient disagreement: disagreement over decisions whose fulfillment requires the doctor to violate independent professional commitments.

Another easily resolved case of doctor-patient disagreement concerns the quality of the patient’s decision:

CONFUSION: Paula has recently been diagnosed with early-stage breast cancer in her left breast. Her doctor Dorothy believes that a lumpectomy coupled with chemotherapy is the best course of action from a medical standpoint, given that Paula is not at high risk for developing cancer in her right breast. Paula, however, hopes to procure a bilateral mastectomy because she believes it is the least risky course of action. She believes that the diagnosis in her left breast means that the cancer will spread to her right breast, and that removing the right breast is the only way to ensure that spread will not occur.

In CONFUSION, Paula requests a treatment that is medically acceptable. A bilateral mastectomy is recognized as a viable treatment option for patients who suffer from early-stage breast cancer.

However, Paula’s request has faulty grounds. Specifically, Paula requests a bilateral mastectomy

41 because of a mistaken appraisal of the risks and benefits of the various treatments. She fails to understand that there is no compelling evidence that a prophylactic mastectomy in the “clean” breast makes a significant difference81 , and that chemotherapy is extremely effective at preventing the spread of cancer.82 While the bilateral mastectomy is in principle capable of a similar effect, it is not necessarily the best way to contain the spread of cancer. Moreover, Paula does not take into consideration the attending risks of a bilateral mastectomy. Therefore, despite the fact that Paula has requested a treatment that is within the bounds of medical acceptability, her request is not sufficiently autonomous.

The partnership model, then, can also explain why Dorothy is justified in pushing for further deliberation in CONFUSION. Because Paula’s decision is made based on a misunderstanding of information pertinent to the decision, the commitment to respect the patient’s right of self-determination does not seem to be violated by prolonging deliberation for the sake of correcting a key misunderstanding. Partnership taken with self-determination, then, can accommodate a second kind of doctor-patient disagreement: disagreement that emerges from an incomplete understanding of information that is relevant to the decision at hand.

HOMEOPATHY and CONFUSION show that the partnership model has no problem with doctor-patient disagreement per se. But then what are the conditions that give rise to a tension between respect for the patient’s right of self-determination and the partnership model in

ADENOMA?

81 TA King et al. “Clinical Management Factors Contribute to the Decision for Contralateral Prophylactic Mastectomy”, Journal of Clinical Oncology 29, no. 16 (2011): 2158-2164. 82 Early Breast Cancer Trialists’ Collaborative Group. “Effects of Chemotherapy and Hormonal Therapy for Early Breast Cancer on Recurrence and 15-Year Survival: An Overview of the Randomised Trials.” The Lancet 365, no. 9472 (2005): 1687–1717.

42 In ADENOMA, Phoebe has requested surgical intervention, which is a legitimate treatment even for pituitary microadenomas. Yet Ellen views surgery as inadvisable. Because some pituitary microadenomas can be reduced in size simply through medication, Ellen thinks it is a less risky bet to begin with medication to alleviate Phoebe’s symptoms and to monitor the tumor’s responsiveness to medication. Moreover, Ellen believes that Phoebe will be able to cope with the side effects of the medication. Even if Phoebe does experience fatigue and difficulty with concentration, Ellen is optimistic that Phoebe can plan her work schedule to be minimally affected by the side effects.

However, Phoebe deeply cares about finishing her dissertation in the next few months.

Failing to finish in the next few months might make her a less attractive candidate in applying for jobs, and there is no certainty that she will be able to secure funding for another year if she were to prolong working on the dissertation. Even though she recognizes that she might be able to handle the side effects of medication, she does not want to risk losing time to an adjustment period or to deal with trying to plan around her medication. She simply wants to get the surgery and move forward. Given the importance to Phoebe of finishing her PhD, she has judged that the attending risks of surgery are worth it.

Ellen’s disagreement with Phoebe’s decision, then, is not due to a misunderstanding of pertinent information or a request for an illegitimate treatment option. Rather, Ellen’s disagreement stems from a disagreement with Phoebe’s priorities; through her request for surgical intervention, Phoebe has communicated that she is willing to take risks to her health for the sake of satisfying other goals. Ellen’s preferred choice reflects a different prioritization of values—one on which considerations of promoting health can outweigh or set back an interest in

43 clearing obstacles to completing a dissertation. Therefore, the disagreement is over the weight certain considerations ought to be given, despite the fact that Phoebe’s decision is a medically legitimate decision and is based on a sufficiently strong grasp of the risks.

ADENOMA seems to point to a tension between the partnership model and the commitment to respect the patient’s right of self-determination because it is a case in which the patient seems to have made a competent, informed choice from among a set of medically legitimate treatment options. However, the doctor finds the patient’s decision dissatisfactory in its devaluation of certain considerations about health in favor of other projects. Thus the commitment to respect the patient’s right of self-determination seems to require deference; the partnership model, however, would not seem to require deference here.

As noted above, proponents of the doctor-patient partnership might have different intuitions about the permissibility of Ellen’s refusal to defer. Since Phoebe has reached a clear choice that is competent and informed, and since Phoebe’s request does not require Ellen to violate any professional commitments, one might think that there is no good reason why Ellen should try and persuade Phoebe to reconsider medication. Thus some proponents of the partnership model might dissolve the tension between the partnership model and the commitment to respect the patient’s right of self-determination in cases like ADENOMA by allowing the patient’s right of self-determination to constrain the doctor’s entitlement to challenge patient decisions in these cases.

But this line of reasoning prevents the doctor from being permitted to try and persuade patients in a whole host of cases where persuasion does seem appropriate. ADENOMA is a tricky case because many of us can relate to Phoebe’s professional ambitions; her priorities may

44 strike many as reasonable. But consider the following case, involving a third patient of

Dorothy’s:

MASTECTOMY: Patricia has recently been diagnosed with early-stage breast cancer in her left breast. Her doctor Dorothy believes that a lumpectomy coupled with radiation therapy is the best course of action from a medical standpoint. Patricia, however, has firmly decided that the best choice for her is a bilateral mastectomy, given her values. For Patricia idolizes Angelina Jolie. She finds her to be an inspiration for women everywhere, and she strives to model her life after Jolie’s. Given Jolie’s championing for “previvor” status, Patricia desires to have the bilateral mastectomy; it is a natural continuation of her pursuit to be like Jolie. Dorothy thinks that Patricia is being cavalier about the invasiveness of the bilateral mastectomy; and that Patricia is taking unnecessary risks to her health for silly reasons. Dorothy wants to try and persuade Patricia to reconsider whether the risks associated with bilateral mastectomy are worth it. But Patricia does not want to discuss alternative treatment options; she wants Dorothy to authorize the mastectomy.

In MASTECTOMY, Patricia has requested a treatment that is deemed medically legitimate.

Bilateral mastectomies are acceptable for Patricia’s condition. Yet the bilateral mastectomy is, by

Dorothy’s lights, inadvisable. Because Patricia is in the early stages of breast cancer, the cancerous tissue is contained to a region that can be excised without removing even one breast.

Thus it is a less invasive surgery than the complete bilateral mastectomy. Moreover, the attending chemotherapy is a way to prevent any possible spread without subjecting Patricia to an overly invasive process that may be equivalent in success to lumpectomy and risks serious complications.83

However, by Patricia’s lights, the bilateral mastectomy is the best course of action.

Patricia cares deeply about her life-shaping project of being like Angelina Jolie, and because the bilateral mastectomy is a medically acceptable way of treating her condition, it is the course of action that allows her to address her health-related concerns while achieving this greater goal of

83 Allison W. Kurian et al. “Use of and Mortality After Bilateral Mastectomy Compared with Other Surgical Treatments for Breast Cancer in California, 1998-2011”, Journal of the American Medical Association 312, no. 9 (September 2014): 902-914.

45 being like Jolie. To Patricia, the attending risks are worth it in order to have undergone the same defining medical procedure as her idol.

But Dorothy disagrees. Given how invasive the bilateral mastectomy is, and given the prospective benefits of the lumpectomy coupled with radiation, Dorothy believes that the risks

Patricia is willing to take for the sake of achieving her goal of living like Jolie are unwise.

Specifically, Dorothy disagrees with a decision that reflects Patricia’s priorities; through her request for the bilateral mastectomy, Patricia has communicated that she is willing to take risks to her health for the sake of satisfying other goals. Dorothy’s preferred choice reflects a different ranking of interests—one in which considerations of health outweigh the project of living like

Jolie. Therefore, the disagreement is over the weight certain considerations ought to be given, despite the fact that Patricia’s decision is a medically legitimate decision.

MASTECTOMY is tricky because it is a case where intuitively, we would want the doctor to be able to try and persuade patients to reconsider their decision. MASTECTOMY seems to be a clear example of a “controversial case”, as Savulescu categorizes it.84 But it seems like MASTECTOMY also reveals the exact same tension between the doctor-patient partnership and the commitment to respect the patient’s right of self-determination as ADENOMA. The nature of Dorothy and Patricia’s disagreement concerns how they prioritize certain values. Thus

MASTECTOMY pushes back on an assumption that we can just limit the doctor’s entitlement to persuade patients in cases like ADENOMA; this would restrict the doctor from trying to

84 Other examples of controversial choices Savulescu considers are: exaggerated cosmetic enhancements, refusals of life-saving interventions, requests for risky or even harmful interventions, and high-risk behavior. Savulescu, “Controversial Choices”, 19-20.

46 persuade patients in much more controversial cases. The remainder of this chapter will be focused predominantly on MASTECTOMY.

In the following three sections, I will consider three arguments for reconciling the partnership model with the commitment to respect the patient’s right of self-determination. In section II, I consider the argument that rational persuasion does not undermine the relevant control the patient requires in order for her right to self-determination to be respected. In section

III, I consider whether the commitment to respect the patient’s right of self-determination might be overridden by considerations of promoting autonomy in cases like MASTECTOMY. And in section IV, I consider whether the commitment to respect the patient’s right of self-determination might be overridden by the doctor’s commitment to promote patient well-being in cases like

MASTECTOMY. I argue that none of these approaches satisfactorily reconcile the doctor’s entitlement to persuade patients to revise their decisions with the commitment to respect the patient’s right of self-determination. Consequently, we have not yet been offered a compelling dissolution of the tension between the partnership model and the commitment to respect the patient’s right of self-determination.

II. Does Deliberation Violate Self-Determination?

One strategy for reconciling the partnership model with the right of self-determination focuses on the means by which Dorothy intervenes. Unlike the cases of medical paternalism that sparked the anti-paternalist push, Dorothy’s desired intervention in MASTECTOMY does not threaten Patricia’s right to self-determination. First, one might argue that rational persuasion is intrinsically dissimilar from traditionally objectionable forms of interference, like coercion or

47 deception.85 Therefore, Dorothy’s insistence on trying to persuade Patricia to change her mind is not ‘interference’ in the normatively loaded sense because it cannot constitute an objectionable impediment to Patricia’s control over the decision. Second, one might argue that Patricia’s attempt to shut down conversation—that is, to conclude deliberation when she does—is an illegitimate exercise of her right to self-determination. This view accepts that Patricia has the right to make the final decision; it would be impermissible for Dorothy to refuse to authorize surgery for Patricia despite Patricia’s decision to proceed with surgery. However, Patricia is trying to do more; she is attempting to end any further deliberation on the matter at hand.

Patricia’s right to make the final decision does not entail the right to terminate deliberation about the matter.86 Therefore, despite the fact that Dorothy is impeding forward movement on

Patricia’s decision, Dorothy’s insistence on trying to persuade Patricia is not a violation of

Patricia’s right to self-determination. I will argue that neither argument satisfactorily resolves the tension between the partnership model and the commitment to respect the patient’s right of self- determination. a. The Argument from Rational Control

The first strategy suggests that Dorothy’s insistence on trying to persuade Patricia is permissible because rational persuasion is an unobjectionable means of intervention. This approach contrasts the effect of deliberation on our capacities for decision-making with coercive, deceptive, or manipulative interference. Coercion, deception, and manipulation directly override

85 Faden and Beauchamp, History and Theory, 337-387. 86 Thanks to Piers Turner for raising this objection.

48 or undermine the rational capacities.87 Presentation of reasons tries to influence the outcome of decision-making via active engagement of the rational capacities.88 This allows the decision- maker to retain control over the decision-making process; coercion, deception, and manipulation are attempts to wrest control over decision-making from the individual. Consequently, Dorothy’s insistence on trying to persuade Patricia does not violate the commitment to respect Patricia’s right of self-determination; insofar as Dorothy’s insistence on trying to persuade Patricia continues to engage Patricia as a rational agent, Patricia’s control over the decision-making process remains intact.89

The assumption that presentation of reasons is always unobjectionable is famously expressed in Mill’s initial articulation of the harm principle.90 In rejecting the paternalistic justification for interference with an agent’s decision-making or action, he states that considerations of what will be better for an individual “are good reasons for remonstrating with him, or reasoning with him, or persuading him, or entreating him, but not for compelling him or visiting him with any evil in case he do otherwise.”91 In this passage, Mill clearly expresses the thought that presentation of reasons differs from compulsion or coercion; while presentation of reasons does not impede one’s control over decision or action, coercion does. If this is the case,

87 Faden and Beauchamp, History and Theory, 347-354. Faden and Beauchamp identify their account of autonomy with the Kantian tradition, in which deception and coercion are thought to be impermissible because deception and coercion block the possibility of consent. Onora O’Neill challenges Faden and Beauchamp claim to belonging within this intellectual tradition. O’Neill, Autonomy and Trust, 28-48. 88 Faden and Beauchamp, History and Theory, 347-354. See also Savulescu, “Rational Non-Interventional Paternalism, 327-331. 89 “Unless we think (implausibly in my view) that…patients have the authority to demand that clinicians not rationally discuss their options with them, then the authority account does not entail that clinicians act paternalistically in trying to rationally persuade a patient to pursue a particular line of treatment, even if the patient does not want to discuss it.” Daniel Groll, “Medical Paternalism—Part 1”, Philosophy Compass 9, no. 3 (2014): 191. 90 Mill, On Liberty, 9. 91 Mill, On Liberty, 9.

49 then there is no real conflict between respect for the patient’s right of self-determination and the partnership model in cases like MASTECTOMY; prolonging deliberation does not override or undermine the patient’s control over the decision.

When we consider the claim that rational persuasion is unobjectionable, we tend to think about cases like Mill’s bridge crosser.92 On Mill’s view, a bystander is permitted to physically restrain someone about to cross an unstable bridge, but only to ensure the bridge-crosser’s decision is informed. Should the bridge-crosser affirm that she is well aware of the risks she takes, continuing to restrain her would be an impermissible violation of her liberty to act.

However, the bystander is allowed to continue standing by the bridge, presenting to the bridge- crosser all the reasons against taking the risk. Such an act might annoy the bridge-crosser, but it does not interfere with her in a morally significant sense, because it continues to engage her rational capacities.

However, we can imagine cases in which the insistence on attempting to persuade an agent is an objectionable impediment to his liberty to act, even if it does not undermine his rational capacities.

WINTER COAT: One arctic night, Jones finds a wool coat draped over a bench and puts it on, keeping himself warm and allowing him to continue de-icing the sidewalk. Smith then approaches Jones and insists that Jones give him the coat, as it belongs to Smith and it had fallen out of his bag the day prior. Without the coat, Smith will be too cold to complete his street sweeping duties. Jones refuses to give Smith the coat, however, until they can discuss the weights of their respective interests, and whether Smith’s interest in completing the street sweeping is sufficient to justify removing the coat from Jones’ back. By doing so, Jones hinders Smith from being able to complete his job.93

92 Mill, On Liberty, 95. 93 This case is adapted from Judith Jarvis Thomson, “A Defense of Abortion”, Philosophy and Public Affairs 1, no. 1 (Autumn 1971): 53-54.

50 Jones’ insistence here does not undermine Smith’s rational capacities; he is not attempting to coerce Smith into giving him the coat, and he does not deceive or manipulate Smith. In fact,

Jones’ refusal may better engage Smith’s rational capacities by adding stakes to the outcome of deliberation; Smith is more likely to carefully craft arguments and reasons for Jones to give him the coat. Nonetheless, Jones’ insistence on trying to persuade Smith creates an objectionable impediment to Smith’s liberty; it is objectionable not just because Jones’ insistence on trying to persuade Smith impedes Smith’s ability to proceed with his intention to complete his street sweeping, but because it does so on grounds that are illegitimate. Smith owns the coat; to force

Smith into further deliberation itself is inappropriate because it presumes that Jones has some authority over what happens to the coat.94 Therefore, the mere fact that Jones engages Smith’s rational capacities does not demonstrate that his insistence on attempting to persuade Smith to change his mind is an unobjectionable impediment to Smith’s right to decide what happens to the coat.

Cases like WINTER COAT show that there are cases in which rational persuasion can be unacceptable in virtue of its impediment to one’s ability to exercise control over a decision or action they are entitled to control. The question is now, is MASTECTOMY a case in which persuasion is an unacceptable violation of Patricia’s exercise of her right to self-determination?

I argue that it is. MASTECTOMY is similar to WINTER COAT in virtue of the doctor’s gatekeeping role. Patients can access most treatments only if the doctor authorizes them to do so.

This permission is given through writing prescriptions, issuing referrals, or scheduling

94 While I am not committing to the claim that self-determination amounts to a form of self-ownership and so am not claiming that WINTER COAT is directly analogous to BILATERAL MASTECTOMY, those sympathetic to understanding self-determination as grounded in or a form of self-ownership will likely see close parallels between WINTER COAT and medical decisions. However, for the purposes of this case, I only aim to show that prolonging deliberation can be morally impermissible.

51 appointments with necessary specialists. Through gatekeeping, doctors have the power to close off options to patients by refusing to grant permission for access to desired resources. In

MASTECTOMY, Dorothy’s insistence on trying to persuade Patricia is not merely an attempt to direct Patricia away from a decision that is under Patricia’ control. Patricia’s ability to act on her chosen treatment depends on Dorothy’s cooperation. By insisting that Patricia discuss with her the benefits of lumpectomy with radiation, Dorothy impedes Patricia’s ability to make and act on a decision that Patricia has the right to make.

Note that Dorothy need not be banking on her authority swaying Patricia away from surgery; Dorothy may intend to engage Patricia in good faith, as a deliberative partner. But given that Patricia lacks the ability to access her desired treatment without Dorothy’s authorization,

Dorothy’s insistence on trying to persuade Patricia to revise her decision creates impediments that are liberty-restricting. Therefore, even though Dorothy’s act does not undermine Patricia’s ability to function as a rational agent, Dorothy’s insistence on further deliberation impedes

Patricia’s liberty to act on her decisions.

The point here is not that Dorothy’s gatekeeping power somehow renders her persuasive influence far stronger than in a case of ordinary deliberation, such that her presentation of reasons exerts non-rational influence over the patient.95 Patricia may be strong-willed and confident enough to retain conviction in her decision and to hold her own in deliberation. The point is that Dorothy’s insistence on prolonging deliberation impedes Patricia’s ability to act on

95 Faden and Beauchamp do consider this kind of influence as a possible compromise to autonomous decision- making. However, some patients are unusually well-composed and unintimidated in the face of an authority figure telling them no. Thus we need not assume that in every case, the doctor’s insistence on participation exerts a possibly manipulative influence. Nonetheless, the doctor’s intervention creates a further limitation on the patient’s liberty to act, one that requires justification. See Faden and Beauchamp, History and Theory, 368-373 for a discussion of the problem of “role constraints”.

52 her choice. Through refusing to write prescriptions or authorize treatments for the sake of prolonging deliberation, doctors directly interfere with the control patients have over decisions in this domain.96 To construe their action as “merely presenting reasons” glosses over the impediment the doctor creates.

In a case like MASTECTOMY, it is misleading to suggest that Dorothy commits no violation of self-determination just because her method involves engagement of Patricia’s rational capacities as opposed to undermining the rational capacities. The right to self- determination protects not only decision-making, but also the connection between decision and action. Insofar as Dorothy’s insistence on trying to persuade Patricia impedes Patricia’s ability to translate her decision into action, Dorothy impedes Patricia’s ability to function as a self- determining agent. b. The Argument from Limited Control

I have argued that the appeal to maintaining rational control does not show that Patricia’s right to self-determination has not been impeded. But one might object that I have only shown that the doctor impedes Patricia’s control over the decision; I still have not shown that this impediment is objectionable. After all, Patricia’s control is already impeded; she requires authorization from the doctor in order to receive the bilateral mastectomy. Yet I have not suggested that the authorization requirement is objectionable. Thus the mere fact that insisting on trying to persuade a patient to revise their decision can constitute an impediment to liberty of action does not show by itself that this kind of impediment is objectionable.

96 Jessica Flanigan uses this precise point to defend abolishing prescription requirements. See Jessica Flanigan, Pharmaceutical Freedom: Why Patients Have a Right to Self-Medicate, (New York: Oxford University Press, 2017), 1-31.

53 However, we require a positive account of why such an impediment is unobjectionable.

As it stands, Dorothy appears to occupy a similar position as Jones in WINTER COAT. Just as

Jones impedes Smith’s ability to act on a decision he is entitled to control, Dorothy impedes

Patricia’s ability to act on a decision she is entitled to control, and the means by which she does so is largely irrelevant. Therefore, the burden is on those who would defend the legitimacy of

Dorothy’s entitlement to try and persuade Patricia to revise her decision.

One might argue that WINTER COAT differs from MASTECTOMY because Jones lacks authority not only over the decision of what happens to the coat itself but also over the question of when this matter is resolved. Smith owns the coat, and Jones has merely found it.

Therefore, Smith can choose to comply with Jones’ proposal in the hopes that Jones will willingly turn over the coat. However, once Smith decides that he no longer wishes to play

Jones’ game, he is entitled to terminate deliberation and settle the matter about what happens to the coat. This follows from the powers granted by the right to possess, generally taken to be foundational to the concept of ownership—a power to claim the object, and a power to settle the matter about whether someone will be excluded from using it.97

Yet this might not reflect the proper distribution of decisional authority in medical decision-making. One might argue that even if patients have the right to make the final decision about treatment, they do not have a right to unilaterally terminate deliberation. Considerations of self-determination entitle an individual to make the decision about what will happen to their bodies, but they do not always entitle an individual to terminate deliberation over the matter.

97 A.M. Honoré, “Ownership”, in Oxford Essays in Jurisprudence, ed. Anthony G. Guest. (Oxford: Oxford University Press, 1961), 113.

54 This is especially important in cases like the doctor-patient relationship, where the doctor is tasked with providing care for the patient. Given other principles that might be part of the normative foundation, like the principle of promoting patient well-being, doctors possess a degree of practical authority over the deliberative process itself. On this view, in cases like

MASTECTOMY, doctors like Dorothy do not violate their patients’ right to function as a self- determining agent within the medical setting.

It is certainly possible for an individual to possess the right to make the final decision and yet fail to possess the right to terminate deliberation. But it is unclear why Patricia would lack the right to terminate deliberation. If the decision really is hers to make on the grounds that it is a decision that uniquely concerns her body and her health, then insisting that Dorothy be entitled to refuse to defer to Patricia’s decision for the sake of trying to persuade Patricia to change her mind seems to disregard the significance of recognizing that the decision is Patricia’s. The appeal to patient self-determination implies that medical decisions are the patient’s to make because they concern a matter that is properly under the patient’s control—the patient’s body, health, and life.98 This seems to be bound up with recognizing patients as authoritative over the decision.

Note that this argument does not imply that refusing to defer to a decision in order to try and persuade the patient to choose differently is never justified. In fact, doctors may regularly be justified in trying to persuade patients to revise their decisions. But this is distinct from the claim that doctors are entitled to try and persuade patients to revise decisions, even in cases when

98 Again one can remain neutral about whether this is ultimately captured by a further appeal to some interest we have in exercising control over such decisions, or whether it is a basic entitlement.

55 doctors are dissatisfied with the decisions patients have reached. The onus is on doctors to demonstrate that there is good reason to override the patient’s commitment to a course of action in order to try and persuade them to change their mind. If doctors simply are entitled to try and persuade the patient to change their mind, regardless of the quality of the patient’s decision, then this undermines the claim that patients are authoritative over the decision.

In a case like MASTECTOMY, it is misleading to suggest that Dorothy does not violate her commitment to respect the patient’s right of self-determination just because her method involves engagement of Patricia’s rational capacities. The right to self-determination protects not only decision-making, but also the connection between decision and action. Insofar as Dorothy’s insistence on trying to persuade Patricia to revise her decision meaningfully impedes Patricia’s ability to translate her decision into action, Dorothy impedes Patricia’s ability to function as a self-determining agent. Therefore, proponents of the doctor-patient partnership cannot assume that the doctor’s entitlement to try and persuade Patricia to revise her decision is compatible with respect for the patient’s right of self-determination.

III. The Value of Promoting Autonomy?

Proponents of the doctor-patient partnership should accept that, in attempting to persuade patients to revise their commitment to a course of action, the doctor does interfere with the patient’s control over the final decision. They overstep the bounds of their authority as dictated by the commitment to respect the patient’s right of self-determination. However, a proponent of the doctor-patient partnership might argue that doctors are justified in their attempts to persuade patients to change their minds. This strategy respects the force of the commitment to respect the patient’s right of self-determination. However, it does not treat this commitment as absolute; it is

56 consistent with exceptions. There are instances where interference with the right to make and act on decisions regarding one’s health is justified because it is outweighed by competing values.

In this section, I consider the suggestion that doctors are justified in trying to persuade patients to change their decisions in all cases like MASTECTOMY because doing so will make patient decisions more autonomous. For the purposes of this discussion, I use ‘autonomy’ to refer to the property an individual possesses such that they can be said to be the author of their choices and actions; choices and actions can be more or less autonomous depending on the extent to which the choice or action emerges from this authorial source.99

Precisely what makes a patient’s choice or action autonomous is widely disputed.100

Some suggest that autonomy should be identified exclusively with the adequate exercise of capacities for instrumental reasoning.101 For example, on this view a decision is sufficiently autonomous if it is non-accidental, sufficiently informed, and sufficiently voluntary.102 Other add a condition of authenticity; the decision or action must align with some kind of stable judgment, value, or desire that the individual identifies with or endorses.103 Still others argue that the choice or action must be based on or responsive to reasons (theoretical or practical) that there in fact

99 Isaiah Berlin identifies this as “positive liberty”, in contrast to “negative liberty”, which refers to the domain of activity in which an individual is to enjoy the absence of deliberate intervention. Isaiah Berlin, “Two Concepts of Liberty” in Isaiah Berlin: Liberty, ed. Henry Hardy, (London: Oxford University Press, 2002), 168-169. 100 Nomy Arpaly identifies eight different uses of the term ‘autonomy’. Nomy Arpaly, Unprincipled Virtue: An Inquiry into Moral Agency, (New York: Oxford University Press, 2003), 117-130. 101 Faden and Beauchamp, History and Theory, 235-262; Beauchamp and Childress, Principles of Biomedical Ethics, 104-105. 102 Faden and Beauchamp’s view (also commonly cited as Beauchamp and Childress’s view) is easily the most influential conception of ‘autonomy’ in the medical ethics literature. 103 Gerald Dworkin, “Autonomy and Informed Consent” in The Theory and Practice of Autonomy, (Cambridge: Cambridge University Press, 1988), 100-120; Neil Levy, “Forced to Be Free? Increasing Patient Autonomy by Constraining It”, Journal of Medical Ethics (2012): 5-8.

57 are.104 However, what is important about each of these criteria is that it is possible for choices made by an individual to fail to meet some standard for quality. It is not enough for a patient to make a choice; patients need to make autonomous choices.

How might one committed to the importance of making autonomous choices use this to justify intervention in cases like MASTECTOMY? Defenders of the partnership model might argue that doctors should not assume patients are capable of independently arriving at sufficiently autonomous decisions; it is rare that any of us are capable of doing so without assistance, even in less complex domains than medicine.105 In many cases, patients end up making insufficiently autonomous decisions. Thus the partnership model justifies certain forms of intervention into the patient’s decision-making (like prolonged deliberation) on the grounds that doing so promotes the patient’s autonomy.

One might be tempted to suppose that since Dorothy’s autonomy-promoting intervention is by way of deliberation, Dorothy’s intervention is permissible. Deliberation, unlike coercion or deception, is not autonomy-undermining. Yet as we saw in the previous section, it does not follow from the fact that Dorothy avoids coercing or deceiving Patricia that Dorothy’s intervention satisfies her commitment to respect Patricia’s right to self-determination. Dorothy does not undermine Patricia’s autonomy in her intervention, but she impedes Patricia’s liberty to act on her decision. Self-determination is the right to make decisions and take actions that concern matters central to one’s life, as part of broader life-shaping activity. It is typically

104 Savulescu, “Liberal Rationalism”, 123-124; Julian Savulescu and Richard W. Momeyer, “Should Informed Consent Be Based on Rational Beliefs?”, Journal of Medical Ethics 23, no. 5, (October 1997): 282-288; Dan W. Brock and Steven A. Wartman. “When Competent Patients Make Irrational Choices”, The New England Journal of Medicine 322, no. 22, (1990): 1595-1599. 105 Levy, “Forced to Be Free?”, 3-5; Richard W. Thaler and Cass R. Sunstein, Nudge: Improving Decisions about Health, Wealth, and Happiness, (New York: Penguin Books, 2008), 17-102.

58 assumed that in order for this right to have any practical significance, one must be able to enjoy a presumption of individual liberty.106 Insofar as Dorothy’s intervention impedes Patricia’s liberty to act on a decision concerning a matter central to Patricia’s life, Dorothy’s action is prima facie a violation of her commitment to respect Patricia’s right to self-determination. Thus in order for this defense to succeed, proponents of partnership must explain precisely how Dorothy’s intervention promotes Patricia’s autonomy, such that it could plausibly justify her intervention.

One characterization of the aim to promote autonomy appeals to the improvement in the reasoning underlying our decisions.107 By being forced to consider reasons for alternative courses of action, and by being forced to engage in dialogue about our decisions, we correct for any possible errors in our reasoning, and we gain a deeper understanding of the values and reasons behind our choices. “Our evaluations become better informed, more vivid, and through challenge and defense, they become more real and more clearly important to us.”108 Therefore, the impediment to Patricia’s exercise of her power to act on her choice is justified by the improvement to Patricia’s reasoning behind her choice.

If Dorothy’s intervention is justified only for the sake of correcting errors in Patricia’s reasoning, then the appeal to autonomy is extremely limited in terms of licensed deliberation. In this case, Dorothy’s licensed deliberation is much like the permission to temporarily restrain the bridge-crosser in order to check that she knows the risks of her action. Once Dorothy is confident

106 “The specific contribution of the liberal tradition to political morality has always been its insistence on the respect due to individual liberty.” Raz, Morality of Freedom, 2. Levy comments on the application of the liberal political tradition to medical ethics: “In rejecting paternalism, medical ethics extends the liberal conception of individual autonomy to the medical sphere. Just as each of us has the right to pursue our own conception of the good without interference from the state, so, it is plausible to think, we have a right to pursue the good life as we see it without interference form medical professionals.” Levy, “Forced to Be Free”, 2. 107 Savulescu, “Liberal Rationalism”, 123-127; Savulescu and Momeyer, “Should Informed Consent...”, 282-283; Faden and Beauchamp, History and Theory, 346-351. 108 Savulescu, “Liberal Rationalism”, 126.

59 that Patricia has not made a factual mistake or poor inference, Dorothy’s prolonging deliberation is no longer justified. But in MASTECTOMY, Dorothy is interested in trying to convince

Patricia to reconsider her choice in light of other values, and the partnership model should allow for this.109 Therefore, a mere appeal to correction in instrumental reasoning may license temporary deliberative intervention, but only of a narrow form.

The proponent of the doctor-patient partnership, then, should appeal to the aim of deepening Patricia’s own understanding of her values and reasons behind her decision. However, there is something paternalistic about preventing Patricia from proceeding with a decision she is pro tanto entitled to make, out of the interest of ensuring that Patricia deepens her understanding of her values.110 As noted before, respect for the patient’s right of self-determination implies treating their will as authoritative. This implies that the patient’s will silences competing considerations; by attempting to persuade the patient to change her mind, even when the patient has reached a competent decision, the doctor fails to treat the patient’s will as authoritative.111

It is particularly objectionable in this way because Patricia has made clear that she is not particularly interested in discussing her value set with Dorothy. Patricia is confident in her decision and in the reasons behind it. If Dorothy nonetheless insists that they discuss Patricia’s values and her reasons behind her decision, then Dorothy uses her gatekeeping power to engage

109 Again, I am assuming this is a desideratum for the proponents of both doctor-patient partnership and the commitment to respect the patient’s right of self-determination. 110 See Tsai, “Rational Persuasion as Paternalism”, 78-112 for the argument that the presentation of reasons about a decision that concerns the presentee’s well-being is paternalistic if the presenter (i) is motivated by and (ii) conveys distrust of the presentee’s ability to independently recognize and weigh reasons, and (iii) frustrates an opportunity for the presentee to independently deliberate. See Davis, “Rational Persuasion, Paternalism, and Respect” 513-522, for an argument that the core paternalistic feature of cases where competent deliberators are presented reasons is when the presentation of reasons is contrary to the agent’s will. 111 Groll, “Paternalism, Respect, and the Will”, 699-702. Thanks to Dana Howard for the suggestion of invoking Groll’s argument here.

60 Patricia in open, public deliberation against her will.112 Therefore, Dorothy not only restricts

Patricia’s liberty to act on her decision; she forces Patricia to be accountable to Dorothy in a way it is not clear Dorothy is entitled to demand.

We should also note that if the value of promoting Patricia’s autonomy is sufficiently strong to outweigh the commitment to respect her right of self-determination, then we would expect doctors to take up the stance of a “devil’s advocate”, even when the doctor already agrees with the decision. If it is so important to make sure that the patient has a deep understanding of her reasons behind her medical decisions, then the doctor should push back even when the doctor is in agreement with the patient’s decision. But this is not what is captured in the vision of the doctor-patient partnership. The aim is consensus between the doctor and patient; if the patient and doctor are in agreement, then the account of partnership will see no real reason to push back on the patient’s decision in order to ensure that her decision is truly autonomous. Therefore, the appeal to the value of improving Patricia’s understanding of her own reasons will recommend doctors disagree with their patients even in cases where the partnership approach will see the matter as settled.113

All of this is compatible with acknowledging that further deliberation with Dorothy may in fact improve Patricia’s reasoning behind her decision to procure the bilateral mastectomy.

Likely she has not exhausted all of the possible considerations for or against her choice. We can always deliberate more. But Patricia has considered thoroughly both the relevant information concerning the treatments and the ways in which the treatments interact with her values. Thus

Dorothy’s attempt to use her power to restrict Patricia’s access to treatment in order to scrutinize

112 Davis, “Rational Persuasion”, 514-515. 113 Thanks to Dana Howard for this suggestion.

61 and “improve” Patricia’s own understanding of her values smacks of disrespect for Patricia’s exercise of her right to self-determination.114

One might argue that Dorothy’s impediment of Patricia’s decision is not simply to strengthen the quality of the reasoning behind the decision itself, but to ensure coherence between the decision and Patricia’s values. Promoting autonomy requires ensuring that particular decisions actually reflect Patricia’s considered values that guide how she lives her life.115

Dorothy may not be justified in intervening with Patricia’s decision on the grounds that the reasoning itself can be improved, but she may be justified if Patricia’s chosen treatment fails to align appropriately with Patricia’s overarching values and projects.

However, Dorothy has every reason to believe that Patricia’s choice aligns with her values. Since Patricia has expressed that her primary concern is continuing her life-shaping project of being like Angelina Jolie, and given that Patricia’s selected treatment is extremely similar to Jolie’s chosen treatment, it seems like Dorothy has no reason to suspect that Patricia’s choice fails to align with her overarching projects.

One might argue that Patricia’s choice to secure a bilateral mastectomy is in tension with her overall values, because Patricia also values her health. Insofar as the bilateral mastectomy threatens to compromise Patricia’s health in certain ways, it fails to cohere with her overall values. Rather, it coheres only with one of her values. By encouraging Patricia to consider the comparative impacts to her health of the bilateral mastectomy and the lumpectomy, Dorothy is

114 Daniel Groll notes there would be something very odd about the doctor who said ‘Having listened to your defense of your project of living like Jolie, I have now decided that you should have the bilateral mastectomy, because it seems to me like you know what you want.’ As Groll states, we could reasonably expect the patient to feel “surprised, and upset, at this way of putting things: ‘What do you mean you have decided? It was not your decision to make!’” Groll, “Paternalism, Respect, and the Will”, 707. 115 “An irrational choice is one that satisfies [the patient’s own] aims and values less completely than another available treatment choice.” Brock and Wartman, “When Competent Patients…”, 1596.

62 encouraging Patricia to consider how her decision coheres with all of her projects and values, not just her project of living like Jolie. Such intervention is important because by myopic focus on a particular consideration, we can hamper the future pursuit of other projects and values.116

If Patricia had completely neglected all considerations regarding her health, or if Patricia did not recognize considerations about her health as reasons, then it is plausible that Dorothy’s insistence on prolonging deliberation could be justified by considerations of promoting Patricia’s autonomy.117 However, there is an important distinction between neglect and adjudication. Part of being an autonomous agent is adjudicating conflicts among the various projects and aims we have. We cannot always bring our various values, goals, and projects into perfect alignment; sometimes we have to accept that one of our projects or values will need to be compromised or sacrificed for the sake of pursuing other ends. Such choices are themselves constitutive of the life-shaping activity protected by the right to self-determination.

By considering the risks to her health and yet nonetheless selecting the bilateral mastectomy, Patricia has not failed to take into account all of her values. Rather, Patricia has adjudicated a conflict between two values she has: her health, and her pursuit to be like Jolie.

She has decided that it is worth the risk to her health to prioritize the project of living like Jolie.

Therefore, Patricia’s decision to go with the bilateral mastectomy does not reflect an incoherence between her decision and her overall values. It reflects a particular prioritization of her various

116 “Autonomy is a diachronic property of agents: an agent rules herself when she is able to exert her will across time. The agent subject to preference reversals is impaired in her autonomy because she cannot do this. Instead she finds herself continually frustrating her own ends.” Levy, “Forced to be Free”, 6. 117 I do think other argumentative work would need to be completed. One would still need to show, for example, that it is appropriate for the doctor to aim at promoting Patricia’s autonomy. However, the question is whether the interest in promoting autonomy is even sufficiently strong in this case to plausibly outweigh the commitment to respect patient self-determination.

63 projects and concerns; in this case, living like Jolie is more important to her than minimizing the likelihood of negative health outcomes.

Moreover, Patricia’s choice does promote her health. While she assumes certain inadvisable risks to her health that she could easily avoid, she has selected a medically acceptable course of action. This is importantly different from a case like HOMEOPATHY, where Paris’ life-shaping project of living like Paul McCartney leads her to decide upon a homeopathic intervention as treatment for her breast cancer. Therefore, Patricia does not neglect her health; she merely deprioritizes it.118

If Patricia’s decision to go with the bilateral mastectomy reflects an autonomously chosen solution to a conflict between two of her values, then it is not at all clear that Dorothy’s intervention is justified by an appeal to promoting coherence between Patricia’s decision and her overall values. Patricia’s decision is clearly coherent with her overall values; she has chosen to prioritize her project of modeling her life after Angelina Jolie, and given this prioritization, the bilateral mastectomy is the proper means to achieving this goal. Given Patricia’s configuration of her values, choosing the lumpectomy would be incoherent with her overall values. Therefore,

Dorothy’s intervention clearly is not justified by the aim to bring Patricia’s decision into coherence with her overall values.

This invites us to reflect on what precisely Dorothy’s aim is in MASTECTOMY.

Dorothy seems to recognize that Patricia is well-informed about the risks attending the bilateral mastectomy, and she acknowledges that Patricia’s decision probably is the coherent choice,

118 Of course, Patricia also may just have been lucky enough to emulate a celebrity who chose a medically acceptable course of treatment. Nonetheless, the point stands that adjudication of conflict between values does not imply neglect of values.

64 given Patricia’s project of modeling her life after Angelina Jolie. However, Dorothy wants

Patricia to value things differently. Dorothy thinks that Patricia should be more concerned about the risks she is taking to her health, and that she should devalue her project of living like

Angelina Jolie; by Dorothy’s lights, Patricia should instead prioritize getting healthy and should not be willing to take certain risks along the way.

This suggests that Dorothy’s aim is to get Patricia to choose a course of action in tension with her current configuration of her values. Dorothy thinks Patricia is making an unnecessarily risky decision for poor reasons, and she believes she is justified in refusing to defer to Patricia’s decision until she has had the opportunity to try and convince her to choose differently. Thus

Dorothy is aiming for revision, not reinforcement. Should Patricia change her mind, she would be choosing against her overall values.

There is a key distinction between insisting on continued deliberation in order to improve the decision in reference to the patient’s values, and insisting on continued deliberation in order to improve the decision in reference to the doctor’s values. Dorothy aims to do the latter, not the former. Dorothy wants Patricia to be more risk-averse and to downgrade her project of shaping her life like Angelina Jolie’s—at least in the context of medical decision-making. Perhaps it will in fact make Patricia’s life better to prevent her from acting on this decision and to try to convince her to choose differently. However, Dorothy’s intervention will not make Patricia’s decision more autonomous. After all, if Dorothy is successful, then Patricia’s decision will not cohere with her value configuration, or her “real self”.119

119 Nomy Arpaly, Unprincipled Virtue, 121-124.

65 Note that just as Dorothy is not going to push back on a decision about which she and

Patricia are in agreement in order to improve Patricia’s understanding of her reasons, Dorothy is not going to try to persuade Patricia to make a decision that compromises Patricia’s health in order to promote competing projects or values Patricia may have. This would undermine the doctor’s focus on achieving good health outcomes. Moreover, Dorothy would not be justified, on grounds of promoting Patricia’s autonomy, in pushing back on Patricia’s decision in order to persuade her to revise her decision; insofar as Dorothy’s success would lead to a decision misaligned with Patricia’s values, Dorothy’s intervention would frustrate the value of promoting autonomy. Therefore, it is implausible that the appeal to promoting the patient’s autonomy will justify the doctor’s attempt to try and persuade the patient in cases like MASTECTOMY.

IV. The Value of Promoting Well-Being?

I have argued that appealing to the value of promoting autonomy to justify Dorothy’s attempt to persuade Patricia to revise her decision fails. Another possible strategy is to argue that

Dorothy’s intervention is justified on the grounds that it will promote Patricia’s well-being.

Doctors have a professional obligation to promote patient well-being. In the wake of anti- paternalism, almost no one has suggested that we ought to abandon doctors’ commitment to promote patient well-being; this commitment simply must be checked by respect for the patient’s right of self-determination.120 However, it is possible that the imperative to promote patient well- being could override the commitment to respect the patient’s right of self-determination in certain cases. By trying to persuade Patricia to take a different course of action, Dorothy works to ensure that Patricia’s well-being is promoted. Preventing Dorothy from being able to intervene

120 Robert Veatch is a notable exception here. See Veatch, Patient, Heal Thyself, 33-63.

66 in Patricia’s decision-making against Patricia’s will, even in limited and non-autonomy- undermining ways, threatens Patricia’s well-being.121

However, note that characterizing Dorothy’s aim of intervention as promoting Patricia’s well-being seems to misrepresent Dorothy and Patricia’s dispute in MASTECTOMY. Dorothy is not concerned with Patricia’s overall well-being. Dorothy is concerned fundamentally with

Patricia’s health, a particular element of Patricia’s well-being. Patricia, by contrast, wants to act on an option that promotes her conception of her well-being. Given the life she has created,

Patricia’s well-being is far more influenced by her success in emulating Jolie. Dorothy’s input, therefore, is aimed not at promoting Patricia’s overall well-being; it is aimed at promoting

Patricia’s health, even if the bilateral mastectomy in fact is the treatment that best promotes

Patricia’s overall well-being. Given the kind of person Patricia is, it may not actually be in

Patricia’s best interest to avoid the risk to her health that a bilateral mastectomy poses. In

MASTECTOMY, then, the value of promoting patient well-being might not imply that Dorothy is permitted to refuse to act on Patricia’s decision.

One might point out that Dorothy’s desire for Patricia to take more seriously considerations about her health ultimately derives from a judgment about what is actually in

Patricia’s best interests. Sometimes patients make mistakes about their well-being. Dorothy may believe that Patricia’s conception of her own good is fundamentally mistaken, especially with respect to the weight she ascribes to health. Consequently, Dorothy is not concerned solely with health, independent of Patricia’s overall well-being. She disagrees with the relative unimportance

121 Beauchamp and Childress, Principles of Biomedical Ethics, 214-223; Buchanan and Brock, Deciding for Others, 29-47.

67 Patricia ascribes to her health in her overall well-being. Therefore, this judgment is fundamentally concerned with Patricia’s overall well-being.

Patients are not always excellent judges of their own well-being; many have argued that this unreliability of good judgment provides adequate grounds for intervention.122 However, it does not follow that simply because patient judgment of patient well-being is regularly sub- optimal, doctors suddenly have superior insight into patient well-being than patients.123 In many cases, doctors and patients are near-complete strangers.124 Unless we suppose that overall well- being is tightly correlated with health, doctors generally have no grounds to suppose they have superior insight than patients with respect to patients’ overall well-being. If doctors lack better insight into a patient’s well-being than the patient, then it is not clear why the doctor’s professional obligation to promote patient well-being would outweigh the commitment to respect self-determination in cases where the patient has a clear conception of her own good.

One might argue that the promotion of patient well-being is not simply a matter of ensuring that patients do not choose against their current set of interests; sometimes it may justify encouraging patients to act against their interests. Specifically, in cases where the patient has poor values, promoting patient well-being implies that doctors should try to improve

122 Buchanan and Brock emphasize this point. See also Dan W. Brock, “The Ideal of Shared Decision-Making Between Physicians and Patients”. Kennedy Institute of Ethics Journal 1, No. 1, (1991): 28-47. For arguments that the reliability of individual mistakes in judgments about one’s own well-being might justify certain forms of intervention, see Sarah Conly, Against Autonomy: Justifying Coercive Paternalism, (New York: Cambridge University Press, 2013), 16-46; Thaler and Sunstein, Nudge, 74-82; J.S. Blumenthal-Barby, “Seeking Better Health Care Outcomes: The Ethics of Using the Nudge”, American Journal of Bioethics 12, no. 2 (2012): 1-10. 123 Flanigan, Pharmaceutical Freedom, 13. 124 Robert Veatch, “The Physician as Stranger: The Ethics of the Anonymous Patient-Physician Relationship” in The Patient-Physician Relation: The Patient as Partner, Part 2, (Bloomington: Indiana University Press, 1991), 33-46.

68 patients’ values.125 Currently it is in Patricia’s interest to receive the lumpectomy because it is likely to achieve desired health outcomes while minimizing the risk of complications from more invasive surgery. Patricia selects the bilateral mastectomy only insofar as this procedure satisfies her goal of living like Angelina Jolie. Given that modeling one’s entire life after a celebrity is not part of living a good life, promoting Patricia’s well-being requires trying to convince her to choose away from her current value set, and perhaps even to revise her values.

There are two ways to understand the relationship between Patricia’s value of living like

Jolie and Patricia’s interests. First, one might claim that what constitutes the good for a human being is wholly divorced from the actual value set they have. Insofar as one’s values are comprised of things that are bad for humans, one’s interests are not satisfied through actions that realize these values.126 This view is extremely controversial, insofar as it does not include autonomy itself as a constituent of a good human life. On this view, successfully acting in accord with one’s values does not contribute in and of itself to one’s well-being. Given that the majority of proponents of a perfectionist liberalism include autonomy as part of a good human life, it is unlikely that they will deny there is any value in acting in accord with one’s values.

A far more plausible interpretation of the imperative to improve the values underlying one’s interests will claim that autonomy in and of itself is part of a good human life, but that the content of certain values does not promote human good. On this view, there is a sense in which

125 “Some value judgments are wrong. To claim that one’s life is not worth living because one’s bunion is painful is mistaken, no matter how well-informed the judgment.” Savulescu, “Rational Non-Interventional Paternalism”, 330. See also Savulescu, “Liberal Rationalism”, 123-124, for the claim that liberals ought to be objectivists about the good. 126 Savulescu seems to endorse a wholly objectivist conception of the good, in which there are facts about what is good for a person independent of their desires or values. He is not clear about the inclusion of autonomy (as I’ve characterized it) as part of what is good for a person. I doubt very much, however, that he intends to exclude autonomy as part of one’s good.

69 obtaining the bilateral mastectomy is good for Patricia, given that this course of action coheres with a life-shaping commitment, and deciding and acting in ways that cohere with one’s values is good for a person. However, it comes at a risk to another of Patricia’s interests: namely, her value-independent interest in maintaining health and longevity of life.

We can separate out an individual’s set of interests into two broad categories: (1) “value- independent”, or the interests that they have independent of their goals, plans, and values, and (2)

“value-dependent”, or the interests that they have in virtue of holding certain goals or plans or having certain values.127 It is commonly assumed that individuals have an interest in maintaining health and longevity of life, even if they do not value being healthy or living a long life; since continued existence and avoiding illness are necessary conditions on pursuing the goals and plans that make up the content of one’s values, we at least have a value-independent interest in maintaining health and life.

Insofar as the content of Patricia’s commitment is not one that promotes an individual’s good, and insofar as her decision threatens another interest of hers, the only interest advanced is her interest in acting in accord with the values she in fact has. Even if this ends up a net positive increase to her well-being, her well-being could be increased even further if she were to modify the content of her values to ones that do promote individual good. Therefore, the doctor’s commitment to promote patient well-being is not exhausted by attending to what is currently in

127 Raz classifies the set of biological needs necessary for continued pursuit of one’s goals and preservation of the faculties required for goal adoption and abandonment as one’s self-interest; one’s chosen goals and projects are constituents of one’s well-being. In this section, I use ‘well-being’ loosely to refer to that which is in one’s interest; this can include goal-independent interests and goal-dependent interests. Feinberg captures this as a distinction between welfare interests and ulterior interests: welfare interests are those that are a necessary condition for the achievement of more ultimate interests; ulterior interests are those constitutive of one’s goals, plans, and values. See Raz, Morality of Freedom, 295-297; Joel Feinberg, The Moral Limits of the Criminal Law, Vol. 1: Harm to Others, (New York: Oxford University Press, 1987), 37.

70 their patient’s interests. Rather, the doctor’s commitment to promote patient well-being involves trying to improve the values that inform a part of the patient’s well-being.128 That is to say, receiving the bilateral mastectomy is currently in Patricia’s interest, but it would not be if she had better values. And trying to get people to value better is an important part of promoting well- being.

There are two concerns about this approach as a justification for overriding the patient’s right of self-determination. First, it seems to simply embrace limited hard paternalism. Savulescu relies in part on the claim that there is nothing paternalistic about engaging individuals in rational dialogue about their values, since rational dialogue engages the rational capacities.129 Yet in the previous section, I have argued that this argument is inadequate in the doctor-patient relationship; insofar as the doctor has gatekeeping or prescribing power, the extension of rational dialogue against the patient’s wishes is a form of objectionable intervention absent sufficient justification. Given this argument, appeal to the interest in promoting patient well-being by way of encouraging better values is straightforwardly an acceptance of cases of justified paternalism.

Perhaps we ultimately should be comfortable with some form of paternalism; I will table this for now.130

Second, it is possible for this approach to conflict with a commitment to neutrality about the good, an assumption common to medical ethics. This commitment to neutrality about the

128 “One can normally do little to help a person, other than by helping him to achieve his goals, or by getting him to adopt goals that are better for him, or to abandon ones which are bad for him.” Raz, Morality of Freedom, 291. 129 Interestingly, Savulescu initially formulates his account as a form of limited paternalism in Savulescu (1995). He then notes in Savulescu (1997) that he is really defending a Mill-inspired account of the acceptability of the presentation of reasons, which he takes to be completely compatible with a commitment to anti-paternalism. He should revert back to viewing this as justified hard paternalism. 130 In Chapter 3, I offer a paternalistic justification for allocating a share of decisional authority to the doctor. However, the account I provide there differs in some important ways from the form of perfectionism under consideration here.

71 good seems to fall out of the commitment to respect the patient’s right of self-determination. As

Levy notes, “Just as each of us has the right to pursue our own conception of the good without interference from the state, so, it is plausible to think, we have a right to pursue the good life as we see it without interference from medical professionals.”131 According to the proponent of doctor-patient partnership prepared to endorse this argument, Dorothy is justified in trying to persuade Patricia to change her decision because Patricia’s idea of the good life is not worthwhile. Yet this seems to violate a commitment to remain neutral about competing conceptions of the good.

But we should proceed carefully here. Given that the aims of the medical institution are to restore and promote health, on the grounds that health is centrally important to individual well-being, it is obvious that the medical institution is not wholly neutral with respect to the good. An attitude of complete neutrality about the good would be absurd for an institution and practice built specifically on the assumption that it provides an indispensable social service. Thus the medical institution clearly endorses a non-neutral conception of the good to some extent; medical decisions that track an individual conception of the good that excessively devalues health are unacceptable decisions. Paternalistic persuasion, then, may justifiably override the commitment to respect the patient’s right of self-determination when concerned with decisions that devalue health, such as Patricia’s decision in MASTECTOMY.

Yet is the impulse to try and persuade Patricia in MASTECTOMY really based out of a legitimate concern for the devaluation of her health? To examine this, let’s revisit ADENOMA.

Recall that Phoebe has requested surgical intervention at a point where it is inadvisable, given

131 Levy, “Forced to Be Free”, 2.

72 the size of the tumor and the good possibility of addressing the tumor with a less invasive approach (medication). However, Phoebe’s request emerges out of a desire to ensure that she completes her PhD in a timely manner. Given the setback that medication might pose to her non- health-related values, she has made a decision that incurs greater health risks.

Is persuasion to try and improve Phoebe’s values permissible in ADENOMA? Note that

Phoebe has not devalued her health to the extent that she chooses to neglect the adenoma, or that she requests some experimental medication that would dissolve the tumor, but which risks permanent loss of some cognitive functions. Her decision is not irresponsible with respect to her health; it’s simply inadvisable. But note that Patricia’s decision in MASTECTOMY is also not irresponsible with respect to her health. Both lumpectomy and mastectomy involve tissue excision and radiation therapy carries its own risks. The bilateral mastectomy has a sufficiently high success rate that it is considered an acceptable medical intervention. And again, Patricia is not neglecting her cancer or requesting high-risk treatments with a large number of unknowns.

Contrast these cases with Savulescu’s case of a person who would rather die than live with the pain of a bunion.132 Here it seems clear that a problematic devaluation of one’s health and life has occurred, one that would justify overriding the commitment to respect the patient’s right of self-determination. Thus both Phoebe and Patricia make risky requests, but they are not requests that reflect complete devaluation of their health and lives, or that put their health at significantly greater risk than the alternative treatments would do.

132 Savulescu, “Rational Non-Interventional Paternalism”, 330. There seem to be other problems with the patient in this case, but the devaluation of health and life in this case is sufficient to justify persuasion.

73 Recall that we introduced MASTECTOMY on the supposition that intuitions about the permissibility of persuasion in ADENOMA would be split. MASTECTOMY seems to be a clear case in which an attempt to persuade Patricia to revise her decision is permissible. And yet both

ADENOMA and MASTECTOMY involve moderate devaluation of one’s health for the sake of pursuing other goals or projects. This implies three options: (1) the doctor’s attempt to persuade the patient is justified in both cases; (2) the doctor’s attempt to persuade the patient is unjustified in both cases; (3) the cases are asymmetrical. We can set (2) aside for now, given the assumption that Dorothy’s attempt to persuade Patricia is justified in MASTECTOMY. (1) reflects a much stronger commitment to the permissibility of paternalistic intervention than the kind implied by

Savulescu’s suggestion. In ADENOMA, it will be difficult to show that it justifies overriding the commitment to respect the patient’s right of self-determination. Thus (3) is likely the most attractive option, for Phoebe’s prioritization of values seems much more reasonable than

Patricia’s.

Yet this judgment does seem to constitute a violation of the medical institution’s commitment to neutrality about the good. For the asymmetry in judgment about whether persuasion is justified reflects a judgment that Phoebe’s non-health-related projects are worth the risk to her health, while Patricia’s non-health-related projects are not. In other words, Phoebe’s non-health-related project of completing her PhD in the next several months is a project suitable for a good life; Patricia’s non-health-related project of emulating Angelina Jolie is not a project suitable for a good life. This judgment does violate an appropriate commitment to neutrality about the good, especially in an institutional arrangement that enshrines a commitment to respect the patient’s right of self-determination. Thus the proponent of the doctor-patient partnership

74 cannot maintain divergent judgments about the permissibility of persuasion in ADENOMA compared to MASTECTOMY. The only option left for the proponent of the doctor-patient partnership is (1): persuasion is permissible in both cases. Here the perfectionist line is implausible with respect to ADENOMA, especially as justification to override the patient’s right of self-determination. Consequently, the value of promoting patient well-being fails to provide a plausible justification for overriding the commitment to respect the patient’s right of self- determination in cases like ADENOMA and MASTECTOMY.

V. Doctors: Partners or Contractors?

I have argued that proponents of the doctor-patient partnership have not successfully resolved the partnership model’s tension with the commitment to respect the patient’s right of self-determination. The mere fact that rational persuasion does not circumvent the rational capacities does not imply that persuasion does not interfere with the patient’s control over treatment decisions. Moreover, in cases like ADENOMA and MASTECTOMY, neither the value of promoting the patient’s autonomy nor the doctor’s professional commitment to promote the patient’s well-being successfully justify intervention. As it stands, the doctor-patient partnership seems to allow that doctors can unjustifiably violate their commitment to respect the patient’s right of self-determination in the interest of pursuing a decision that is more satisfactory to the doctor.

The natural justification for the doctor’s entitlement to try and persuade patients to revise their decisions, at this point, is the claim that this entitlement itself is an instance of justified paternalism. Even in cases where the risks to the patient’s health are not overly severe, it is important that doctors be entitled to try and persuade patients and challenge them on their

75 decisions in order to protect the doctor’s commitment to promote patient well-being, even when doing so would appear to violate the commitment to respect the patient’s right of self- determination.

On this argument, the entitlement to try and persuade patients to revise their decisions is a defensible constraint on the patient’s exercise of their right of self-determination in order to guard against the reintroduction of the informative model.133 The informative model is commonly taken to be the logical extension of elevating the commitment to respect the patient’s right of self-determination above all other commitments. According to the informative model, patients are responsible for their own care decisions; doctors are to completely defer to patients with respect to questions about their own values, intervening only to provide needed medical information. Thus patients not only have the right but the responsibility for treatment decision- making on this model; doctors are required to remain as uninvolved in the decision-making process as is possible.

Professionals, patients, and ethicists reject the informative model partially on the grounds that it is overly demanding of patients. Among other considerations, the informative model disregards the extent to which patients want physicians to be active participants in decision- making, not only in providing them necessary information but also in soliciting their advice and input on what doctors think the patient ought to do. Insofar as one believes that self- determination does not require that patients make decisions absent input from others, it is assumed that one has reason to reject the informative model.

133 Mark Hall, “Review of Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge by Robert Veatch”, New England Journal of Medicine 359, (2008): 2851-2852; Sherwin B. Nuland, “Autonomy Amuck”, The New Republic, 1 July 2009. https://newrepublic.com/article/62808/autonomy-amuck. Accessed 15 May 2018.

76 Defenders of the doctor-patient partnership may argue, then, that the partnership model is a better model of the doctor-patient relationship than the informative model. If reconfiguring the doctor’s role around respect for the patient’s right of self-determination requires relegating the doctor to an information provider, then the majority of patients will not have the support they desire in their decision-making. The partnership model, by contrast, recognizes that this constraint on the commitment to respect for the patient’s right of self-determination is an acceptable cost to bear if it follows from a model that awards doctors the power to participate in decision-making in the way most patients desire. Therefore, the partnership model is preferable to the informative model, in spite of the paternalistic constraint imposed on the patient’s right of self-determination.

However, the claim that centering the commitment to respect the patient’s right of self- determination yields the informative model is mistaken. Rather than leading to the “informative model”, centering the commitment to respect the patient’s right of self-determination yields the contractor model of the doctor-patient relationship. On the contractor model of the doctor- patient relationship, the patient functions like a client who hires a contractor to help her with a bathroom renovation; the doctor is the contractor specializing in bathroom renovation. There are two key features about the contractor model that distinguish it from the partnership model in ways relevant to MASTECTOMY.

First, the contractor model is unconcerned with consensus. Only the client’s satisfaction with the decision matters. For example, imagine that at the end of deliberation, the client decides to place the tub in the center of the room. The contractor believes that it would be easier and more efficient were the tub in the back corner. However, the client greatly prefers the aesthetic of

77 the tub in the center of the room and is willing to sacrifice ease and efficiency for it. She is even willing to risk the complications that may come with installing the tub in the center of the room; she has the money to cover unforeseen expenditures. Thus the client is highly satisfied with the decision for the bathroom layout; the contractor remains convinced that it is not the best choice.

In this situation, the contractor’s dissatisfaction is irrelevant. The client ended up choosing a bathroom layout that best reflected her preferences and values. The contractor cares about different things than the client, and the client is the one who has to live with the resulting bathroom. A contractor who refused to implement the client’s decision because he disagreed with the decision would be acting inappropriately.

On the contractor model of the doctor-patient relationship, only the patient’s satisfaction with the decision is relevant. Patricia is deeply committed to selecting the bilateral mastectomy because she firmly believes that it will best realize her project of being like Jolie while remaining compatible with her medical goals. Dorothy is completely dissatisfied with Patricia’s choice, but this is irrelevant on the contractor model.

On the partnership model, however, doctor dissatisfaction is relevant to the quality of the resulting decision; in valuing the active participation of both parties, it sets consensus as part of its ideal. Doctors are entitled to try and persuade patients to revise their commitments specifically for the sake of trying to come closer to consensus. Thus the partnership model and the contractor model differ on whether Dorothy is justified in refusing to proceed given her dissatisfaction with Patricia’s treatment decision.

Second, the contractor model offers a flexible account of the doctor’s role in medical decision-making. On the contractor model, the appropriate degree of doctor participation in the

78 decision-making process depends on the extent to which the patient wants the doctor to participate. Consider two homeowners looking to renovate a bathroom. One homeowner is unfamiliar with bathroom renovation, has very little idea of what would be feasible in the space, and has given little thought to what he likes. This homeowner is looking for a contractor who will be more involved in the planning process, who will really help him figure out what layout will be best for him and his home. The other homeowner has renovated the three other bathrooms in her home, has a clear sense of the possibilities and limitations within the space she has, and has decided how she would like the bathroom to look. This homeowner is looking for a contractor who will simply execute her vision. Neither of these homeowners has unreasonable expectations of their contractors. Certainly, some contractors prefer to be more involved in the creative process; others might prefer to be more hands-off. But both approaches to the renovation process are perfectly appropriate; neither homeowner’s approach requires stripping the contractor of important powers or saddling the contractor with unreasonable burdens.

The contractor model of the doctor-patient relationship affords the same openness to the doctor’s role. Some patients may want their doctor to be highly involved in decision-making; they may feel overwhelmed by the task of making medical decisions unassisted, they might value their doctor’s input or experience, and they might feel like they have no idea what their relevant values are. Requesting that the doctor be an active and engaged participant in decision- making is a reasonable request that the doctor can (and should!) satisfy. But other patients may be incredibly self-sufficient. Patients like Patricia require little or no assistance in the decision- making process; all Patricia wants is for Dorothy to execute her requested course of action. On the contractor model, this is also a reasonable request that the doctor can (and should!) satisfy.

79 By contrast, the partnership model does not allow patients like Patricia the degree of independence they desire. Doctors are entitled to challenge their decisions and try to persuade them to make a different choice, even if the patient explicitly wants to cease deliberation.

Patients who expect doctors to defer immediately upon their having reached a competent and informed decision are not attentive to the entitlements characteristic of the partnership model.

Thus the partnership model and the contractor model differ on whether Dorothy acts permissibly by attempting to persuade Patricia to revise her decision.

The contractor model is an important challenge to the partnership model, because the contractor model accommodates the patient’s desires about the degree and nature of doctor participation in treatment decision-making. Unlike the informative model, it does not restrict the doctor to a particular form of participation. The doctor’s role is tailored to the patient’s preferences. This is compatible with allowing the doctor to be an active participant who challenges the patient and tries to persuade them to make different decisions. However, it is also compatible with allowing the doctor to be cut out of deliberation almost entirely, functioning primarily as an information provider.

Note that the contractor model could be built up into what looks like a pretty robust partnership. Some proponents of the contractor model may be more permissive with respect to what constitutes an admissible justification for the doctor’s intervention than others; perhaps they will argue that there are cases where promoting autonomy or promoting well-being does constitute legitimate grounds for participation, even if unwanted. The contractor model may be developed to a point where it is functionally equivalent to the original vision of the partnership model. However, the key point is that the doctor is not entitled to try and persuade patients. On

80 the contractor model, authority over medical decisions resides squarely with the patient, as a result of the patient’s right of self-determination.

Note that the contractor model also does justice to the intuition that the doctor is there to help the patient. However, the contractor model reconfigures the relevant conception of

“helping” the patient. By being responsive to patient preferences concerning doctor involvement, the contractor model accommodates all patients and provides them with “power over the proceedings”.134 Thus the doctor cares for the patient by being attentive to the patient’s needs, providing whatever assistance in deliberation the patient deems necessary.135 Thus the contractor model captures a very weak partnership between the doctor and patient, similar to one between a personal assistant and his boss.

Highlighting the contractor model as an alternative account of medical decision-making clarifies what seems to be the key distinguishing feature of the partnership model. Those who are committed to the doctor’s entitlement to try and persuade patients to revise their decisions seem to be committed to the idea that, in some sense, medical decisions are a shared project. That is, medical decisions are not “up to the patient”; rather, medical decisions are up to the doctor and patient. Only if doctors enjoy some share of decisional authority will they be entitled to try and persuade the patient to revise their decisions in cases of disagreement. This makes the partnership model look far more radical than it is generally conceived of.

In order to justify the costs of constraining the commitment to respect the patient’s right of self-determination, proponents of the partnership model have appealed to the badness of the

134 Flanigan, “Three Arguments “, 3. 135 “It is not really an equal partnership because the focus is on the medical and other interests of the patient. Thus, the patient is the senior partner or the managing partner. The physician is present in the relation to provide assistance to the patient in areas in which the patient lacks adequate skills or knowledge.” Veatch, Patient, Heal Thyself, 66.

81 informative model. However, the partnership model must defend its standing as the preferred model of the doctor-patient relationship against the contractor model, not the informative model.

Insofar it fails to do so, the partnership model cannot be assumed to be the preferable model of the doctor-patient relationship.

VI. The Challenge to Partnership

I have argued that proponents of the partnership model have not provided a convincing account of why the doctor is entitled to try and persuade patients to reconsider decisions they reach regarding their medical care. Attempts to try to persuade patients to revise their decisions impede the patient’s control over their medical decisions; that this impediment does not circumvent the patient’s rational capacities is irrelevant. The claim that the commitment to respect the patient’s right of self-determination is overridden by the interest in promoting autonomy or by the doctor’s commitment to promote patient well-being is unconvincing in cases like ADENOMA and MASTECTOMY. Finally, the claim that the doctor’s entitlement to try and persuade patients to revise decisions is necessary to avoid the informative model overlooks the contractor model of the doctor-patient relationship. This alternative account allows for doctor participation in medical decision-making that conforms to the autonomous preferences of the patient, without providing doctors an entitlement to participate. Any unwanted participation in medical decision-making must be justified on the contractor model.

The failure to reconcile the partnership model with the commitment to respect the patient’s right of self-determination suggests that there is a deep incompatibility between the vision of proponents of the doctor-patient partnership, and the normative foundation that account currently rests upon. If this vision of the doctor-patient partnership is to be achieved, then it

82 requires a distinctive normative foundation; it cannot rest upon the principles it inherited from the initial rejection of medical paternalism. Specifically, achieving the vision of the doctor- patient partnership requires abandoning the commitment to respect the patient’s right of self- determination.

Given the choice between abandoning the original vision of the doctor-patient partnership and abandoning the commitment to respect the patient’s right of self-determination, I imagine many will move away from the original vision of the doctor-patient partnership as an ideal.

Perhaps a suitably constrained contractor model is sufficient. In the remaining three chapters, however, I will argue in favor of a normative foundation that can ground the original vision of the partnership model while doing justice to the anti-paternalist insights that pushed people towards the partnership model. In doing so, I hope to preserve the doctor-patient partnership as the ideal relationship.

In the next chapter, I will defend the value of doctors being entitled to try and persuade patients to revise their decisions; the power awarded by the partnership model to the doctor is a key part of preserving the doctor’s ability to function as an advocate for individual health. This is a valuable social role the doctor plays; it is important in protecting individual well-being. I defend the value of this social role, and I argue that awarding the doctor the authority to intervene in deliberation against the patient’s will need not be accompanied by the traditionally objectionable assumptions undergirding paternalistic intervention. My approach may still appear paternalistic to the likes of those who are already wholly comfortable with deferring to patients

83 in cases like ADENOMA and MASTECTOMY.136 However, my defense of the value of doctor participation avoids many of the traditional pitfalls of paternalistic intervention.

136 Here I have in mind individuals like Jessica Flanigan and Robert Veatch, who openly advocate for the contractor model approach. I am under no impression that what I have to say will be persuasive to those who have already essentially advocated for a shift to the pure contractor model.

Chapter 3: The Value of Health Advocacy

The doctor-patient partnership is frequently justified in part by an appeal to the importance of respecting the patient’s right of self-determination. While the partnership model preserves doctors’ entitlement to participate in medical decision-making in order to protect their commitment to promote patient health, it disallows doctors from riding roughshod over patient decisions. However, there are cases in which the doctor’s purported entitlement to participate in medical decision-making conflicts with respect for the patient’s right of self-determination.

ADENOMA: Phoebe has been diagnosed with a benign microadenoma on her pituitary gland that causes irregularities in hormone production. Ellen believes that Phoebe should make surgical removal a last resort and to manage the symptoms with cabergoline. However, based on the information Ellen has provided Phoebe, Phoebe has decided she wants to avoid the common side effects of cabergoline—grogginess and concentration problems on the days after it is taken— because she wants to complete her dissertation in the next several months. Thus based on the information provided, Phoebe has immediately decided that she wants surgical removal. Ellen wants to try and convince Phoebe to try out the medication and to try and develop techniques for dealing with the side effects, but Phoebe simply wants Ellen to authorize the surgery as soon as possible.

MASTECTOMY: Patricia has recently been diagnosed with early-stage breast cancer in her left breast. Her doctor Dorothy believes that a lumpectomy coupled with radiation therapy is the best course of action from a medical standpoint. Patricia, however, has firmly decided that the best choice for her is a bilateral mastectomy, given her values. For Patricia idolizes Angelina Jolie. She finds her to be an inspiration for women everywhere, and she strives to model her life after Jolie’s. Given Jolie’s championing for “previvor” status, Patricia desires to have the bilateral mastectomy; it is a natural continuation of her pursuit to be like Jolie. Dorothy thinks that Patricia is being cavalier about the invasiveness of the bilateral mastectomy; and that Patricia is taking unnecessary risks to her health for silly reasons. Dorothy wants to try and persuade Patricia to reconsider whether the risks associated with bilateral mastectomy are worth it. But Patricia does not want to discuss alternative treatment options; she wants Dorothy to authorize the mastectomy.

Cases like ADENOMA and MASTECTOMY detail clinical encounters in which the patients reach autonomous decisions regarding their care that are, from the clinician’s point of view, non- optimal or risky with respect to their health, but that do better at promoting other projects or

85 values the patients have. The doctor-patient partnership arguably should allow for the doctors to push back on the patients’ decisions in these cases, but it is unclear why they would be permitted to do so if bound by a commitment to respect the patient’s right of self-determination.

In the previous chapter, I argued that these cases reveal a failure to fully appreciate two different ways of conceiving of a collaboration between doctor and patient. First, the permissions awarded to the doctor and patient on the partnership model make sense only if the doctor and patient share authority over the final decision. But this distribution of decisional authority is incompatible with a commitment to respect the patient’s right of self-determination.

Alternatively, the commitment to respect the patient’s right of self-determination is compatible with the “contractor” model of the doctor-patient relationship. On this model, the doctor’s permission to push back on patient decisions is contingent on the patient’s invitation of pushback, or on the ability to justify a challenge to the patient’s authority over the decision in a given case. While these two models may frequently produce decision-making processes that look similar, the underlying normative structure is importantly different; ADENOMA and

MASTECTOMY detail clinical encounters where this difference in underlying normative structure makes a practical difference.

The previous chapter revealed two paths for proponents of collaboration between doctors and patients. Either we can embrace the partnership model of the doctor-patient relationship and abandon the commitment to respect the patient’s right of self-determination, or we can preserve the commitment to respect the patient’s right of self-determination and settle for the contractor model of the doctor-patient relationship. My aim in the remainder of the dissertation is to defend

86 a distinctive normative foundation for the partnership model of the doctor patient-relationship, one that excludes the commitment to respect the patient’s right of self-determination.

In this chapter, my aim is to defend the value of the partnership model over the contractor model. Specifically, I defend the claim that the partnership model preserves an important element of the doctor’s role that the contractor model abandons. I begin by explaining further how the partnership model and the contractor model diverge both in their conceptions of the doctor’s role in medical decision-making and in their conceptions of the project of medical decision-making. I then demonstrate how the contractor model loses out on a feature of the doctor’s role as a health care provider: the doctor’s authority to function as an advocate for patient health.

After explaining the role of the doctor as patient health advocate, I argue that the doctor’s role as a patient health advocate is valuable, not in and of itself, but insofar as it helps protect patient well-being. Because patients are often subject to a myriad of external social pressures to deprioritize or devalue their health, pressures that are unresponsive to patients’ individual well- being, patients may make medical decisions that reflect this deprioritization. While such deprioritization may not be the product of a failure of reasoning, deprioritization of their own health can still be harmful to patients. Therefore, the doctor’s role as a patient health advocate is valuable because it helps protect patients from compromising their well-being.

Appeal to the value of patient health advocacy implies that the partnership model is paternalistic, in that its justification depends in part on paternalistic considerations.137 In light of this, I consider and address two different anti-paternalist challenges to the justification provided

137 Peter deMarneffe, “Avoiding Paternalism”, Philosophy and Public Affairs 34, no. 1 (Winter 2006): 68-94.

87 for the partnership model. First, one might argue that the paternalistic justification for the partnership model fails because paternalistic reasons in principle cannot justify removing decisional authority from the patient. Second, one might argue that the paternalistic justification for the partnership model fails because it assumes that patients are less expert about their own well-being. I conclude the chapter by setting up the third challenge to the partnership model: that it renders the patient’s entitlement to participate in medical decision-making insecure.

I. The Doctor as Contractor

The feature that distinguishes the contractor model from the partnership model is its allocation of the authority to make medical decisions to the patient. Allocating total authority to the patient treats the patient’s will as structurally decisive. When the patient makes the decision to act, this does not introduce a weighty reason or additional consideration that tips the scale in favor of the patient’s preferred course of action. Rather, the patient’s decision settles the question of how to proceed by “silencing” other considerations relevant to the decision; it does not outweigh these other considerations, but renders them inactive.138 This has three implications for the contractor model’s vision of the doctor’s role.

First, if the patient’s decision successfully settles the question of how to proceed in the face of a diagnosis, then this has implications for the doctor’s freedom of decision and action. As noted previously, patients may have authority over their treatment decisions, but they lack the power to acquire the resources and services needed to act on these decisions. If the doctor could permissibly refuse to act on competent and informed decisions the patient made in order to try and persuade the patient to revise her decision, then it would make no sense to say that the

138 I use Groll’s language of “silencing” here to refer to the effect of the patient’s decision, as it nicely captures the distinctive power at play. Groll, “Paternalism, Respect and the Will”, 701.

88 patient had the authority to make medical decisions. Absent a successful challenge to the patient’s authority or the outcome of her deliberation, the doctor has an obligation to act on the patient’s treatment decision. Therefore, the contractor model’s allocation of decisional authority to the patient implies that the patient has authority not just over the decision, but over the doctor; the patient’s decision creates for the doctor a pro tanto obligation to comply.139

Second, the contractor model implies that the doctor has no independent interest in a particular medical decision-making process. By ‘interest’, I do not mean the distinctive considerations that the doctor may focus on or bring to bear in medical decision-making. Rather, insofar as the doctor has a stake in a treatment decision, this is because the patient has brought the doctor on as part of the patient’s project. The doctor’s interest in the decision-making process derives from the patient’s interest in the decision-making process and the employment of the doctor’s assistance. This has implications for the moral significance of a doctor’s disagreement with the patient—namely, the doctor’s disagreement itself is morally insignificant. Absent specification of the content of disagreement, the doctor’s disagreement is morally equivalent to a suburbanite deeply offended by the poor upkeep of their lazy neighbor’s lawn. No one would deny that this person is upset by the overgrown state of the grass and that this person has a strong emotional interest in their neighbor taking an afternoon to mow the lawn, but this interest is morally irrelevant. The lazy homeowner has no standing obligation to take seriously their neighbor’s offense. Similarly, the patient has no standing obligation to take their doctor’s disagreement with their decision seriously.

139 Jurisdictional challenges may include not only challenges to the patient’s competence, but also other-regarding obligations that may be unable to be met (for example, rationing of scarce resources).

89 Third, the extent to which doctors can challenge patient decisions on the contractor model varies according to what counts as admissible grounds for challenging the patient’s authority. A defender of the contractor model who is extremely resistant to paternalism will allow the doctor to challenge patient authority only on the grounds that the patient’s capacities for self- determination have been compromised. By contrast, a defender of the contractor model that sees paternalism as less objectionable may allow for doctors to challenge patient decisions, and so patient authority, in cases where significant harm is expected to result from the patient’s choice.

There is a range of considerations in between. However, in all of these variants, the doctor’s ability to push back on a patient’s decision is contingent on whether she can justifiably challenge the patient’s authority in a given case. This is the defining feature of the contractor model.

These three features are significant, as noted previously, because the contractor model implies that patients have the authority to cut their doctors out of treatment decision-making. In many cases, doctors will be able to override this by way of an admissible justification (again depending on the details of the justificatory framework). For example, perhaps the patient’s decision is underinformed, or perhaps the patient has requested a treatment that doctors are institutionally prevented from providing, or perhaps there is a threat of serious harm. However, in cases where no such justification is readily available, like cases where patients have made risky but competent choices that reflect their priorities, it is not clear what grounds the doctor has to intervene except to confirm that the patient’s decision is competent.140 Specifically, the doctor

140 This would be analogous to Mill’s claim that we may temporarily restraint of the daring bridge-crosser, in order to ensure that she is competent and informed. Once the doctor is assured that the patient’s decision is competent and informed, continued refusal to proceed is impermissible.

90 lacks the authority to push the patient to make a different decision, or to try and convince the patient to change their mind.

The absence of the doctor’s authority in medical decision-making not only specifies a new role for the doctor in medical decision-making, but also it indicates how the partnership model and the contractor model differ in their respective ways of conceiving of the project of medical decision-making. Often in discussions about shared decision-making, the stipulated goal is to reach a decision that improves or restores patient health, while being attentive to the patient’s values and projects.141 This aligns with the aim of medical decision-making as envisioned by the partnership model; there is a recognition that both doctors and patients could diverge in their concerns in a process of medical decision-making, and the partnership model allows both parties to fully participate in deliberation with the aim of reaching a decision that is satisfactory to both parties.

But because the contractor model envisions medical decision-making as fundamentally the patient’s project, this suggests a different way of conceiving of medical decision-making.

Specifically, the contractor model treats patient health as merely one of the patient’s values or projects among many that they may have. Improving patient health has no special standing, relative to the other projects or values a patient may have. Any special standing that patient health has is due to the patient’s assignation of this value. The goal of medical decision-making, according to the contractor model, is to devise a plan of care that integrates seamlessly into the patient’s configuration of their values and projects.

141 “The concept of shared decision-making builds on [the definition of informed consent] by fostering an environment in which patients have the opportunity to evaluate their medical options in accordance with personal preferences and values.” Council on Medical Service. “Shared Decision-Making”. American Medical Association. 7-A-10. Chicago: AMA. 2010. Web. 20 May 2018. See also Huddle, “Putting Patient Autonomy”, 457-482.

91 Obviously seamless integration of a treatment plan into a patient’s broader values and projects is a happy outcome according to the partnership model. But it is not the primary objective of medical decision-making on the partnership model. To see this, consider another

“controversial case”:

INSULIN: Per has been diagnosed with early-stage type II diabetes. His doctor Dennis believes that Per should see if he can manage his condition simply through diet and exercise. Beginning insulin exposes him to increased risk of experiencing hypoglycemia. Per understands the risks of simply managing diabetes with insulin, but Per values his freedom to eat whatever he wants and exercise only when he feels like it; he has always lived a life as full of pleasure and satisfied desires as he can, and he intends to keep it that way. Therefore, Per simply wants to manage his diabetes through insulin immediately. However, Dennis wants to try and persuade Per to try making compromises to his hedonistic lifestyle for the sake of his health. Per simply wants Dennis to authorize his access to insulin.142

In INSULIN, Per’s decision to begin insulin immediately contradicts his doctor Dennis’ preferred course of action to begin by moderating diet and exercise. Per’s request is flawed, by

Dennis’ lights, because Per’s request involves unnecessarily increased risk of experiencing hypoglycemia; however, since Per cares more about maintaining a maximally hedonistic lifestyle and is willing to take certain risks to his health to do so, it seems like the goal of seamless integration of a treatment plan with the patient’s broader values and projects would favor Per’s request. But insofar as Per’s decision involves a compromise to his health, a compromise Dennis finds unsatisfactory, the partnership model’s objective for medical decision-making has not yet been met. Thus the contractor model and the partnership model exemplify different goals for medical decision-making. The partnership model awards health a special standing in medical decision-making that the contractor model does not—and the authority it awards the doctor to push back on patients’ decisions reflects this.

142 This case is adapted from a case of Jessica Flanigan’s. See Flanigan, Pharmaceutical Freedom, 4.

92 In sum, the contractor model significantly changes the doctor’s role in medical decision- making. In its allocation of total decisional authority to the patient, the contractor model removes the doctor’s authority to try and persuade patients to make better decisions regarding their health, a change that extends beyond the prohibition of coercion, deception, and manipulation. Doctors’ authority to persuade patients to revise their decisions for the sake of improving health outcomes is contingent on their ability in a given decision-making process to justify intervention via a challenge to the patient’s authority; absent a successful challenge, doctors are obligated to defer to their patient’s decision, regardless of their agreement with the decision.

Yet we cannot simply assume that this change is bad. The task for proponents of the partnership model, then, is to show that doctor’s authority to try and persuade patients to make different decisions that better promote their health is worth preserving. In what follows, I argue that the authority to persuade patients is an important part of the doctor’s role as an advocate for patient health. Such advocacy requires not only the authority to advocate on behalf of patient health to others, but also the authority to advocate on behalf of patient health to patients. And given the benefit to individual well-being of the doctor’s role as a patient health advocate, we ought not abandon this role.

II. The Doctor as Patient Health Advocate

The difference of the doctor’s role between the partnership model and the contractor model concerns the doctor’s permission to challenge patient decisions. On the partnership model, the doctor is permitted to challenge patients’ decisions because the doctor has the authority to do so. By contrast, on the contractor model, the doctor’s permission to challenge patients’ decisions depends on whether the doctor is justified in challenging the patient’s authority. The key

93 question is whether stripping doctors of the authority to challenge patient decisions changes the doctor’s role in a way we would not want to lose. At the end of the previous section, I suggested that stripping the doctor of this authority compromises the doctor’s ability to function as a patient health advocate.143 In this section, I set out merely to describe the role of the doctor as an advocate for patient health; I leave the defense of the value of this role until the following section.

The doctor’s role as patient health advocate specifies a particular conception of the altruistic commitment, or the doctor’s commitment to prioritize patients’ interests over other considerations.144 Patient health advocacy entails that doctors commit specifically to a hierarchy within patient interests; while patient well-being is prioritized over other considerations, patient health is prioritized over other elements of patient well-being. I will refer to this as the ‘narrow altruistic commitment’. In contrast, the ‘altruistic commitment’ may be captured as the commitment to promote the patient’s total well-being, with no commitment to a hierarchy among

143 Huddle also uses this language in reference to the doctor’s role. He suggests that Quill and Brody, Brock, and Emanuel and Emanuel’s accounts all contain this notion of the doctor as a health advocate. Emanuel and Emanuel clearly preserve this role for doctors. However, the language used by Quill and Brody and Brock seem compatible with a constrained form of the contractor model. Quill and Brody focus on the doctor’s participation as justified by the interest in promoting patient autonomy; however, they grant that “final choices belong to fully informed patients”. The grounds for this are not specified; if it is a commitment to respect patient’s right of self-determination, then we are back with a constrained form of the contractor model. Brock criticizes the “pure contractor” model in part on the grounds that it fails to “recognize physicians as independent agents, with moral and professional commitments that can appropriately guide and limit their action in the service of a patient’s aims or values” (Brock, “Ideal of Shared Decision-Making”, 31). Again, this is compatible with a constrained contractor model of the doctor-patient relationship; doctors defer to patient decisions unless they can justify their refusal to defer by way of an independent moral or professional commitment. See Huddle, “Putting Patient Autonomy”, 457-482; Quill and Brody, “Physician Recommendations and Patient Autonomy”, 763-769; Brock, “Ideal of Shared Decision-Making”, 28-47; Emanuel and Emanuel, “Four Models” 2221-2226. 144 Katz, Silent World, 93-95.

94 the patient’s values. I will refer to this as the ‘wide altruistic commitment’. The narrow altruistic commitment is currently less popular,145 but I will try to say some things to motivate it.

The doctor occupies a distinctive social role. Generally, we go to the doctor specifically to address concerns with our health, in particular when we feel like we might be sick or want to prevent getting sick. Doctors are not life coaches; they are not therapists; they are not wellness gurus. Even with recent increased social attention to “wellness”, the doctor’s role has remained tied to the prevention and treatment of disease and illness.

The doctor’s training and expertise reflects this aim. Disease and illness are complex phenomena, and contemporary medicine has made significant strides in addressing them.

However, addressing disease and illness requires specialized knowledge. Doctors generally have superior information and insight into disease and illness than laypeople.146 Even with the increased access to information through the internet and patient-friendly educational materials, it is predictable that there will be a degree of sophistication to the doctor’s understanding regarding disease and illness that the majority of patients lack. Moreover, doctors frequently have clinical experience that can provide helpful insight into the possible impact of a treatment on patients’ daily lives. Doctors who have treated previous patients for the same or a similar disease may be reasonably well-positioned to inform their patients about quality of life expectations, which can be useful information for both doctors and patients.147

It is important not to overstate the significance of this epistemic advantage. As has been noted throughout, clinical expertise is weaker in many cases than often assumed or portrayed,

145 “Patient-centered care” and “the patient as whole person” movements seem to reject this interpretation of the altruistic commitment. 146 Daniel Groll, “Medicine and Well-Being”, in The Routledge Handbook of Philosophy of Well-Being, ed. Guy Fletcher (London: Routledge, 2016), 504-506. 147 Groll, “Medicine and Well-Being”, 505.

95 clinical experience must not be given undue weight, and the difficulties with respect to accurate diagnosis and successful treatment should not be ignored. However, even with these qualifications, we can still recognize that the doctor’s training and expertise makes her particularly well-suited to focus predominantly on the patient’s health.

One might argue that doctors should not prioritize patient health because of the impact treatments have on patients in areas of their life other than their health.148 By prioritizing patient health, doctors fail to acknowledge the diversity of ways in which a treatment could be bad for a patient. This can lead to doctors pushing for treatments that do not help patients, insofar as they fail to promote the patient’s overall well-being. Improving health does not suffice to improve patient welfare.149 Therefore, on this view, the altruistic commitment should be interpreted as a more expansive commitment to prioritize considerations of patient well-being in deliberation, not simply a narrow prioritization of considerations about patient health.

However, this argument has force only if the narrow altruistic commitment somehow excludes considerations about the interaction between treatment and overall patient well-being more broadly; such exclusion does not follow from the narrow altruistic commitment alone.

Exclusion of broader patient interests from deliberation might occur one of two ways.

First, exclusion could come about if doctors were expected to disregard considerations of patients’ broader interests in favor of considerations about patient health. But prioritizing considerations of patient health is compatible with still factoring patients’ broader interests into deliberation. Prioritization may require only giving more weight to considerations about patient

148 One of the morals of the “Iphigenia Jones” case considered by Katz is how patients, when consulted, will reveal treatment-relevant preferences or values that are divorced from health outcomes, such as attractiveness to one’s spouse. Jay Katz, Silent World, 90-93. 149 Savulescu, “Controversial Choices”, 23; Veatch, Patient, Heal Thyself, 33-42.

96 health than considerations about patients’ broader interests. Consider IMMEDIATE INSULIN again. If Dennis deliberates as required by the narrow altruistic commitment, then Dennis’ comparison between beginning insulin immediately and managing Per’s Type II diabetes without insulin can take into consideration Per’s interest in maintaining a hedonistic lifestyle. However, for Dennis, Per’s interest in maintaining a hedonistic lifestyle is less weighty than Per’s health, even if Per’s interest in hedonism is more important to Per. When Dennis is deliberating as specified by the narrow altruistic commitment, he will not view Per’s hedonism as conclusive reason to prescribe insulin, but he can still recognize it as a reason for him to prescribe insulin.

Thus Dennis’ conclusion that Per should make compromises to his hedonistic lifestyle is compatible with taking Per’s broader interests into consideration.

Second, exclusion could come about if patients’ broader interests were not represented in treatment deliberation. If the narrow altruistic commitment allows doctors to prioritize patient health over patients’ broader interests, then patients’ broader interests risk not being brought into the deliberation at all. Only if doctors are concerned with patients’ overall well-being will these broader considerations play a part in deliberation.

But this presumes that patients are largely absent from deliberation. If doctors are primarily responsible for treatment decision-making, then the doctor’s myopic focus will predictably lead to important, non-health-related interests going unrepresented; it would make inclusion of patients’ broader interests contingent on the doctor’s sensitivity to patient inclusion.

Yet there is nothing about the narrow altruistic commitment or the doctor’s role as a patient health advocate that commits to excluding the patient from deliberation. This worry simply

97 draws our attention to the importance of ensuring that patients’ interests are represented in treatment decision-making, generally by the patients themselves.

One might infer from the above argument that I am endorsing a picture of treatment decision-making in which there is a normative commitment to a particular division of cognitive labor. Doctors think about health and defer to patients on overall well-being. Patients think about their overall well-being and defer to doctors on health. They bring their deliberations about their topics to the tables and somehow a decision emerges.150 I am not endorsing this picture of treatment decision-making. Rather, the claim about patient representation of their own interests tracks a descriptive fact about how patients tend to approach treatment decision-making. Patients are concerned generally with their overall set of interests. They think not so much about health outcomes; they think about how achieving certain health outcomes may impede other interests, other responsibilities, or other goals. Moreover, when patients think about health, they often think about it through the lens of their activities, goals, and projects. However, patients are free to deliberate about their health as an important part of their overall well-being, and doctors should incorporate information about other constituents of their patients’ overall well-being into their deliberation about the best course of action for the patient. The point is simply that the doctor’s prioritization of considerations about patient health need not exclude patients’ broader interests from figuring into treatment decision-making.

The narrow altruistic commitment implies that doctors are expected to give special weight to considerations about patient health. This is central to the idea that doctors are

150 Many have heavily criticized this model; I will explicitly address and reject this approach to sharing decisional authority in Chapter 5. For now, I simply note that I am not making claims about spheres of authority, but rather claims about deliberative tendencies. See Brock “Ideal of Shared Decision-Making”, 28-47 for criticism.

98 advocates for patient health. However, the ‘advocacy’ component demands more. It is not enough that doctors view health as something to prioritize in their own deliberation about treatment decision-making. Advocacy requires doctors to encourage patients to be more attentive to their health and to give their health greater weight in deliberation about their care than they might otherwise. The doctor’s role as patient health advocate supposes not just that doctors provide medically-relevant information, that doctors occupy a particular point of view, and that doctors give advice to patients. Doctors also actively champion patient’s health-related interests.

Doctors try to persuade individuals to pay attention to their health, to give greater consideration to how a decision will impact their health than they might otherwise be inclined to do, and to act in ways that promote health. Importantly, doctors do these things even when they have good reason to think that their patient ranks her health lower in importance than her other projects or values. Thus the doctor’s role as patient health advocate assumes that doctors can challenge patients on their decisions; specifically, in cases where patients actively deprioritize their health, doctors push back on this deprioritization.

As should be clear, when it comes to the preservation of the doctor’s role as a patient health advocate, the partnership model is superior to the contractor model. On the contractor model, the doctor is there to assist the patient in realizing the patient’s vision of her care. Insofar as the doctor is committed to prioritize the patient’s interests in treatment decision-making, the ideal doctor on the contractor model attempts to guide her decision-making according to the patient’s values and interests; challenges to the patient’s decisions are challenges to the patient’s authority with respect to a given decision. But when the patient’s decision poses a compromise to their health in the stated interest of achieving other goals or satisfying other interests, this is

99 not sufficient justification for challenging the patient’s authority. This is a question of adjudication among competing values, a question that is simply up to the patient. Therefore, in cases where the patient has deprioritized her interest in achieving good health outcomes for the sake of some other interest, the doctor must accept that. The doctor’s ability to strive for good health outcomes is intact only if the patient has retained this as a priority.

By contrast, on the partnership model, the doctor is free to truly advocate for patient health. When the patient’s decision reflects a prioritization of other interests over her health, the doctor’s prioritization of health-related considerations should lead to disagreement; given that doctors have the authority to continue deliberation in order to strive for a decision with which the doctor is more satisfied, the partnership model allows the doctor to push back on the patient’s decision and advocate for a different decision.

The partnership model, therefore, does a far better job at protecting the doctor’s role as a patient health advocate than the contractor model. The contractor model’s vision of the caretaking role presumes an accommodation of the patient’s interests and values, even if the patient’s health occupies a demoted position in her value set. The partnership model, by contrast, allows doctors to try and convince patients to revise their decisions in the interest of achieving superior health outcomes.151

So far, I have merely described the role of the doctor as a patient health advocate.

Doctors are not to ignore patients’ broader interests or concerns, and they even should actively ensure that relevant interests or concerns are on the table. But their primary concern is patient

151 This is similar to the role for the doctor envisioned by Emanuel and Emanuel on their “deliberative model”, in Savulescu as a form of “rational non-interventional paternalism”, and in Huddle as “professional norm-guided decision-making”. Emanuel and Emanuel, “Four Models”, 2222; Savulescu, “Rational Non-Interventional Paternalism”, 330-331; Huddle, “Putting Patient Autonomy”, 460-465.

100 health, not the total set of patient interests; doctors ought to give greater weight to patient health- related interests over patient health-unrelated interests in their deliberations. Moreover, doctors are prepared to try and persuade patients to give more weight to their health-related interests than their health-unrelated interests in situations where patients are ready to make compromises to their health for the sake of other values or projects. The contractor model, in its conception of medical decision-making as the patient’s project for which the doctor is an assistant, cannot preserve the authority for the doctor necessary to be able to operate as a patient health advocate.

Only the partnership model can preserve this dimension of the doctor’s role.

However, the partnership model’s preservation of the doctor’s ability to function as a patient health advocate is a reason to prefer the partnership model to the contractor model only if the doctor’s role as a patient health advocate is worth preserving. One may reasonably be skeptical, however, of the value of such a role. And this skepticism is particularly reasonable if the cost of awarding the doctor a share of decisional authority is the abandonment of the commitment to respect the patient’s right of self-determination. Therefore, it is not enough to detail how the contractor model changes the doctor’s role; proponents of the partnership model must show why we should resist this change.

In what follows, I argue that the doctor’s role as a patient health advocate is a valuable role in part because it helps counterbalance outside material and social pressures that may encourage patients to deprioritize their health in decisions about their medical care. These material and social pressures may be particularly heightened with respect to more vulnerable communities within society—impoverished people, women, transgender individuals, or people of color may experience significantly greater pressures to devalue their health than others in

101 society.152 But even in a just social arrangement, individuals will face social and material pressures that encourage them to deprioritize their health. Providing this counterbalance is important given the importance of health to our individual well-being; it helps protect our overall well-being from decisions that may negatively impact a very important part of it.

III. The Value of Patient Health Advocacy

Between the partnership model and the contractor model, only the partnership model is able to preserve the doctor’s role as a patient health advocate. However, this works as a defense of the partnership model only if patient health advocacy is valuable. The mere fact that the contractor model abandons patient health advocacy is insufficient to show that the contractor model is inferior; proponents of the partnership model require a positive account of the value of patient health advocacy.

To begin, we should consider the well-established tradition of conceiving of doctors as patient advocates.153 The patient advocacy model of the doctor’s professional role states that doctors are expected to do whatever they can to ensure their patients can access needed care. In medical decision-making, doctors are expected to reach a judgment of what is in their patient’s

152 This introduces an important question about the patient health advocacy account as an ideal of the doctor’s role. We might ask whether the ideal of the doctor’s role here is the ideal for a non-ideal world, or if it is the ideal even in an ideal world. While the doctor as the patient health advocate has particular punch in an unjust, non-ideal world, there is still room for patient health advocacy in a perfectly just society. Pressures from family or friends, considerations about public presentation, and the multitude of demands to which we are subject will likely be present even in a just social arrangement. Thanks to Dana Howard for this way of formulating the ideal/non-ideal question in relation to the doctor’s role. 153 For examples of the discussion of the doctor’s role as patient advocate, see Albert Jonsen and Andrew L. Jameton, “Social and Political Responsibilities of Physicians”, The Journal of Medicine and Philosophy 2, no. 4, (1977): 376-400; Norman Daniels, “The Ideal Advocate and Limited Resources” Theoretical Medicine and Bioethics 8, no. 1, (1987): 69-80; Nancy Jecker, “Integrating Medical Ethics with Normative Theory: Patient Advocacy and Social Responsibility”, Theoretical Medicine 11, (1990), 139-150.

102 best interests that is not influenced by external interests or pressures.154 Post-paternalism, patient advocacy constrains doctors’ judgments by considerations of patient self-determination. Thus on the standard picture of patient advocacy, doctors are advocates for the whole patient, not exclusively for the patient’s health.

The conflict that the patient advocate model of the doctor’s professional role generally confronts is conflict between the demands made by an individual patient under the doctor’s care, and the demands of broader society.155 For example, a doctor may be charged with caring for a patient who requires a potentially unjust share of resources in order to address their health needs.

How responsive should a doctor be to broader considerations of justice, given that they are charged with special obligations of care for individual patients? Proponents of patient advocacy range from believing that it is never permissible for a doctor to deny care on grounds of justice, to the claim that claims of justice in and of themselves can override duties of care.156 Whatever the answer, the central question for the patient advocate model is the scope of the doctor’s duties to treat and secure resources in the face of competing claims on those resources from non- patients.

This creates a challenge for appealing to the doctor’s advocacy role to justify intervention in the kinds of cases we have been considering. On the standard advocacy picture, part of the doctor’s role is to secure recognition from the institution and broader society of the legitimacy of

154 Daniels, “Ideal Advocate”, 70-72. This is regularly discussed as the importance of maintaining “physician autonomy”. However, this language is more fraught in light of increased discussion about the doctor’s rights as an autonomous agent to refuse to provide or offer certain kinds of care. The language of ‘autonomous judgment’ in the ideal advocate model refers to judgment that is not bound or beholden to third-party interests (employers, funding organizations, etc.), not judgments that reflect personal moral commitments. 155 Daniels, “Ideal Advocate”, 69-80. 156 See Jecker, “Integrating Medical Ethics”, 126 for a taxonomy of the views one might hold with respect to the limits on doctor advocacy for patients.

103 the patient’s health needs. Doctors are expected to provide their patients access to health care; and they are expected to defend their patients from those who would suggest the patient can go without health care. Thus the doctor’s authority to form independent judgments about patient well-being is justified by the value of protecting their patients from harm or setbacks to their well-being by adverse social pressures.

Patient health advocacy can capture this element of the doctor’s advocacy role. However, in the cases under consideration, the doctor’s advocacy is not on behalf of the patient’s health to society. The doctor’s advocacy is on behalf of the patient’s health to the patient. In ADENOMA,

MASTECTOMY, and INSULIN, each of the doctors hopes to dissuade the patients from their respective decisions out of concern that the patient’s health has been deprioritized for the sake of other values. Yet these deprioritizations do not run contrary to the patients’ wills; they are expressions of the patients’ wills. Consequently, the patients’ requests for certain treatments or services are not being protected; they are being challenged.

This complicates an appeal to patient health advocacy to defend the partnership model.

The doctor’s role as a health advocate is clearly of value when the doctor is making the case to society that the patient’s health is important and ought to be attended to in determining the distribution of resources. It aligns with what we take to be the standard benefit of advocacy.

Advocacy is so valuable because, when successful, it convinces the majority to recognize the importance or legitimacy of underrepresented or relatively powerless interests. In cases where a patient requires a scarce resource or assistance to access care, the doctor’s detached and expert judgment can play a powerful role in convincing the institution and society in recognizing the legitimacy of the patient’s demand.

104 If advocacy is beneficial only because it secures majority recognition of the legitimacy of underrepresented interests, then the doctor’s advocacy for patient health is not of benefit where the addressee is the patient herself. In this case, the patient’s health is being devalued, but it is devalued by the patient’s own hand. So even if the patient’s decision to deprioritize her health for the sake of other values does fail to recognize the importance of her own health, it is not an objectionable failure of recognition. Lots of our interests are important to us, and we cannot always promote them all simultaneously. Therefore, the doctor’s advocacy for patient health is not obviously beneficial in cases where the target of advocacy is the patient herself, unlike cases where the doctor advocates for the patient to others.

Note as well that the doctor’s role as patient advocate is compatible with the contractor model of medical decision-making. If patient advocacy is beneficial only to protect patient health from social or institutional impediments, then the doctor requires only the authority to speak on behalf of the patient. This does not require the doctor to have any share of decisional authority.

The question, then, is whether the doctor’s authority to advocate for health is valuable for reasons applicable to the case of patient devaluation of their own health, not institutional or social devaluation of the patient’s health.

I think there is a further benefit of advocacy that does bear on cases in which patients deprioritize their own health in medical decision-making. To illustrate, consider recent movements like #MeToo.157 The #MeToo movement is noteworthy in its success at calling attention to the widespread problem of workplace sexual harassment of women and men. One important effect of #MeToo has been immediate response by those in positions of power to

157 Stephanie Zacharak et al. “TIME Person of the Year 2017--The Silence Breakers”, 18 December 2017. http://time.com/time-person-of-the-year-2017-silence-breakers/. Accessed 30 May 2018.

105 address a problem that previously had been ignored or downplayed.158 This tracks the standard benefit of advocacy; advocacy helps underrepresented or ignored interests of individuals gain legitimacy within the broader public.

However, another important effect of #MeToo has been the increased confidence of victims of sexual harassment in the legitimacy of their experiences, and in the legitimacy of their interests in being protected from harassment. As Zacharak notes in the article, prior to the takeoff of #MeToo, many of the interviewees questioned whether they really had anything to complain about. “Almost everybody described wrestling with a palpable sense of shame. Had she somehow asked for it? Could she have deflected it? Was she making a big deal out of nothing?”159 However, as #MeToo has grown, more victims of sexual harassment have been empowered to come forward with a recognition that what they experienced matters.

“‘Suddenly," says Terry Reintke... "friends from primary school or women that I know from completely different surroundings that would never call themselves feminists were starting to share their stories.’” Advocating for people whose interests have been overlooked or disregarded, then, helps these people recognize the importance and gravity of their interests and may empower them to act on their interests in ways they may have avoided previously.

The effect of #MeToo on people who have experienced sexual harassment illustrates well this further benefit of advocacy. When the importance of an interest or demand goes unrecognized by the majority or by the powerful, this affects not only the interest holder’s

158 “In October, the Chicago city council passed an ordinance requiring hotels to provide panic buttons to employees who work alone in hotel rooms. In Springfield, Ill., lawmakers passed a measure that will allow an investigation into a backlog of sexual-•harassment complaints in the statehouse. In Arizona, pending legislation would void nondisclosure agreements signed by victims of harassment to keep them silent.” Zacharak et al., “TIME Person of the Year 2017”. 159 Zacharak et al., “TIME Person of the Year 2017”.

106 standing among the majority group; it often affects the interest holder’s perception of the importance of their own interests. Between explicit attitudes that express the perceived unimportance of underrepresented interests, and social structures that implicitly reinforce the perceived unimportance of underrepresented interests, it is easy for the interest holder herself to devalue her own interests.160

By affirming the importance of the interests being advocated for, advocacy frees interest holders to act in ways that reflect the actual importance of the underrepresented interests. By

‘frees’, I do not intend to suggest that prior to advocacy, interest holders are blocked from acting on their own interests. Rather, when previously disregarded interests are advocated for, such advocacy can help interest holders overcome social and material pressures that discourage prioritizing or attending to these interests. Advocacy affirms for the interest holder herself that her interests matter and are worth acting to promote, despite the fact that her interests are deprioritized or ignored in current social structures. Call this the benefit of affirmation.

The question now is, how does the benefit of affirmation relate to doctor-patient interaction? Affirmation is valuable because patient deprioritization of health can emerge as a result of social or material pressures that encourage sacrifices or inattention to health. Social pressures that lead to deprioritization of health include familial or interpersonal responsibilities, opportunities for career advancement, and broader social norms about acceptable appearance or public performance. Material pressures that lead to deprioritization of health include expense of

160 This is closely connected to Miranda Fricker’s account of ‘hermeneutical injustice’, in which individuals or groups lack the conceptual resources to make sense of their experiences due to the absence of representation and interpretation of these experiences in the “public domain”. For an extended discussion of hermeneutical injustice, see Miranda Fricker, Epistemic Injustice: Power and the Ethics of Knowing, (Oxford: Oxford University Press, 2007), 147-175. Thanks to Dana Howard for pointing to the connection here.

107 health care, absence of free time to dedicate to maintaining health, and employment insecurity.

Pressures like these incentivize patients to take risks with respect to their health.

It is important to note, furthermore, that patients who in fact deprioritize their health in response to such pressures often do not do so via an obvious failure of reasoning.161 First, there are actual costs attached to resisting these social and material pressures in favor of prioritizing one’s own health. Prioritizing health needs can bankrupt families and cause job loss; certain treatments are debilitating in ways that delay career advancement or hinder one’s ability to help one’s family or friends in ways that might be central to maintaining the relationship; and some treatments cause disfigurement or disability that make it more difficult for patients to fully participate in public life. Second, there is often room for reasonable disagreement about whether the risks one takes to one’s health for the sake of achieving other projects or goals is worth it.

Consider ADENOMA. When Phoebe decides that her goal of completing her PhD in a timely manner is worth the risks of transsphenoidal surgery, it is not clear that her decision is unreasonable. Transsphenoidal surgery is considered a “safe surgery”; it has an extremely low morbidity rate162, and while there are immediate and delayed postoperative complications associated with transsphenoidal surgery, their incidence is low.163 Furthermore, should she fail to complete her PhD, this would be costly. It closes off certain career paths, it makes it more

161 In noting this, I depart from those who would justify intervention by pointing out common failures of reasoning. For a recent example of this kind of argument, see Conly, Against Autonomy, 16-33. 162 Ivan Ciric et al. “Complications of Transsphenoidal Surgery: Results of a National Survey, Review of the Literature, and Personal Experience”, Neurosurgery 40, no. 2 (1997): 225-236. 163 Tumul Chowdhury et al. “Immediate Postoperative Complications in Transsphenoidal Surgery: A Prospective Study”, Saudi Journal of Anesthesiology 8, no. 3 (2014): 335-341.

108 difficult to be recognized as an expert in a field, and it may decrease earning potential.164 Thus the issue here is not that the patient’s decision is non-autonomous. The problem is that certain social arrangements are structured so as to make it rational for patients to take risks that could negatively impact their health and overall well-being.

This encouraged deprioritization may be something we ultimately think it is acceptable to live with, but it should not go unchecked. Insofar as social arrangements create social and material pressures to deprioritize health, it becomes extremely easy for individuals to build this deprioritization into their value structure. Thus, by advocating for patient health to patients, doctors open up patients to take their own health more seriously than they might without such advocacy. When doctors strive to convince patients to reconsider their decisions to take certain risks to their health, doctors affirm for patients that their health is important and may help guide them towards decisions

To illustrate patient health advocacy in practice, let us consider a real case. A young female patient describes discovering that she had a pituitary macroadenoma (~4cm) that required surgical intervention.165 She was faced with a choice between delaying surgery for several months to avoid taking time off from her new position with Teach for America, or taking three weeks off work to have the surgery at the recommended time. Her initial intention was to delay surgery until the summer, where she would have sufficient vacation time to fully recover without taking time off work. However, the tumor was close to compressing and damaging the optic

164 Anthony Carnevale et al. “The College Payoff: Education, Opportunities, Lifetime Earnings”, (Washington D.C.: The Georgetown University Center on Education and the Workforce, 2011), https://www2.ed.gov/policy/highered/reg/hearulemaking/2011/collegepayoff.pdf. Accessed 8 June 2018. 165 “Recovering from brain surgery for a pituitary adenoma” uploaded by NidiBeats, 23 January 2017, https://www.youtube.com/watch?v=bt3Ii5c6GMw. Accessed 17 June 2018.

109 nerve, risking vision loss. Nonetheless, she judged that she could not risk taking time off work to have the surgery.

As she recounts her story, she discusses how the medical team actively worked to persuade her to change her mind and have the surgery done at the recommended time--one nurse even called her at home to insist that she not wait on the surgery. The patient finally agreed and found a time close to the doctor’s recommendation that would not require her to take as much time off of work; the medical team’s pushback on her intention to wait on surgery was an intervention for which she is “now grateful”.166

The case is a vivid example of patient health advocacy. By trying to persuade the patient to reconsider the potential impact to her health for the sake of her job, the doctor and patient could look for a compromise that would be agreeable to them both. Moreover, this compromise was important; by pushing the patient to reconsider her intention to wait until summer, the medical team protected her from possibly significant damage to her health.167 Without medical professionals pushing the patient to give greater weight to her health, the patient would simply have delayed the surgery until summer—seven months after the recommended time. Through the medical team’s persuasive actions, the medical team provided a significant counterbalance to the job-related pressures the patient experienced to deprioritize her own health in decisions about her medical care, and they encouraged the patient to recognize the importance of attending to her health. Even though the patient may still have preferred to find a course of action that did not

166 NidiBeats, “Recovering…” 167 It should be noted that the patient does not explicitly state that she made a decision. Her description of the events is that she expressed clear preferences about how she wanted to proceed, rejecting the neurosurgeon’s desire for her to undergo surgery immediately. She recounts herself saying “Let’s do summer 2017, I’ll feel much better about that.” I take her language to express a clear commitment to undergoing surgery in 2017, one that she would have followed through on absent the medical team’s resistance. Moreover, it is a commitment that the contractor model would have difficulty defending as non-authoritative. Thanks to Abe Roth for pressing me to clarify this.

110 force her to take any time off from work, the medical team’s advocacy pushed her towards finding a compromise that could both promote her health while minimizing the effect on her career.

Between the partnership model and the contractor model, the partnership model frees the doctor to function fully as a health advocate. Doctors are permitted to advocate for patient health not only to society at large, but also to patients themselves. By contrast, the contractor model constrains doctors with respect to patient-directed advocacy. Doctors’ ability to push for value reprioritization is limited by a patient’s desire to engage in such conversation, or by their ability to justify infringing on the patient’s authority in a particular case. If patients have decided to deprioritize their health for the sake of some other end, this settles the question of the configuration of values on the table in an instance of medical decision-making, absent good reason to reopen the question. Given the abundance of external pressures to neglect or sacrifice health, the doctor’s ability to push back on decisions that reflect deprioritization of health is beneficial, and we should be reluctant to give it up. Therefore, the partnership model secures patient participation in medical decision-making while preserving a valuable social role; the contractor model secures patient participation at the expense of a valuable social role.

IV. Does Health Advocacy Reintroduce Paternalism?

I have argued that doctors should be awarded a share of decisional authority because it is essential to the doctor’s ability to function as an advocate for patient health, and such advocacy is valuable in its assistance in protecting patients from making decisions that are harmful to their well-being. If we adopt a model of medical decision-making that removes this authority from the doctor, as the contractor model does, then we compromise a valuable social role. Therefore,

111 considerations of the value of health advocacy suggest that we should favor the partnership model over the contractor model.

The defense of the partnership model through its preservation of the doctor’s role as a patient health advocate, however, fundamentally appeals to the prospective benefits to patients when their doctors are permitted to function as a patient health advocate. And one might worry that this reintroduces an objectionable paternalism168, an outcome the proponent of the partnership model would want to avoid. In this section, I argue that appealing to patient health advocacy to defend the partnership model need not introduce the objectionable features of paternalism.

First, one might argue that paternalistic reasons cannot justify a shared distribution of decisional authority because paternalistic reasons are inadmissible as a justification for intervening with decisions that directly concern only the individual.169 I concede that it will be difficult to defend the partnership model to those committed to the claim that paternalistic reasons are inadmissible reasons in determining the proper distribution of decisional authority.

But those who are committed to the claim that paternalistic reasons are inadmissible considerations will be unable to permit doctors from engaging even in very mild interference for the sake of promoting patient well-being. The account of the doctor’s role for the principled anti- paternalist will be near analogous to the contractor remodeling the bathroom, a role I have

168 I opt for the normatively neutral use of ‘paternalism’ here. Shiffrin argues that ‘paternalism’ is a normatively loaded term. Seana Valentine Shiffrin, “Paternalism, Unconscionability Doctrine, and Accommodation” Philosophy and Public Affairs 29, no. 3 (Summer 2000): 212. 169 Kalle Grill, “Antipaternalism as a Filter on Reasons”, in New Perspectives on Paternalism and Health Care, ed. Thomas Schramme, (London: Springer, 2015), 47-62. Grill notes that he is not endorsing this form of anti- paternalism; rather, he simply articulates this formulation of principled anti-paternalism. I find the claim that principled anti-paternalism is best understood as a claim about the reasons that can possibly play a justificatory role extremely compelling.

112 offered us reasons to reject. Therefore, I take the appeal of the preservation of the doctor’s role as a patient health advocate to give us sufficient reason to reject principled anti-paternalism.

Second, one might argue that the patient health advocacy approach does not fully appreciate patients’ expertise with respect to their own well-being. By prioritizing patient values in a way that may diverge from the patient’s prioritization and allowing doctors to try and convince patients to act in ways that better reflects the doctor’s configuration of the patient’s values, the patient health advocacy approach appears to reject the claim that patients almost always have better insight into their overall well-being than doctors. Insofar as patient health advocacy justifies awarding doctors some share of decisional authority (as the partnership model demands), the resulting doctor-patient partnership relies on an objectionable skepticism about patient expertise with respect to their overall well-being.

It is easy to defend patient health advocacy in a way that downplays patient expertise. In his defense of a similar role for doctors in medical decision-making, Thomas Huddle justifies the need for more forceful persuasion from doctors by appeal to the sickness and vulnerability of patients in medical decision-making.170 And while it is true that many patients are sick, vulnerable, and cognitively burdened in a way that compromises their decision-making, many are not. If patient health advocacy can be rendered compatible with a recognition for the insight that many patients do bring to the table, then this is preferable to a defense that depends on downplaying patient expertise.

Fortunately, such a defense is available and in fact points to a strength of conceiving of the doctor’s role as a patient health advocate. In my view, patient health advocacy is valuable

170 Huddle, “Putting Patient Autonomy”, 469.

113 precisely because it treats patient health as only one part of patient well-being.171 It need not assume that patients’ overall well-being is irrelevant to medical decision-making, nor need it assume that patients’ top priority should be their own health. Rather, patient health advocacy specifies the doctor’s deliberative focus; with respect to a patient’s overall well-being, the doctor is committed to giving more weight to patient’s health-related interests than the patient’s non- health-related interests.

This creates a disanalogy between the traditional paternalistic approach and the patient health advocacy approach. The traditional paternalistic approach treats only considerations of patient health as relevant to a patient’s overall well-being in medical decision-making.172 A typical element of traditional paternalism is not simply that the intervener is interested in promoting overall well-being; the intervener also assumes that the individual’s judgment of what is in her overall interests is deficient in some way.173 On the paternalistic model of the doctor- patient relationship, the doctor presumes that she is better positioned than the patient to know what is in the patient’s interests. Thus the paternalistic model contains an assumption of relative superiority of judgment about the patient’s well-being, not just an interest in promoting it.

However, it is not clear that doctors who are free to serve as patient health advocates must assume that they have superior judgment about what is in a patient’s overall well-being.

171 Regardless of whether one adopts a monistic account of well-being, according to which there is one basic good, or a pluralistic account of well-being, according to which there is more than one basic good, there will be multiple contributory sources of well-being. Thus when I refer to a ‘part’ of one’s well-being, I simply intend to refer to a particular contributory source of well-being. For this account of the distinction between monistic and pluralistic theories of well-being, see Eden Lin, “Monism and Pluralism”, in The Routledge Handbook of the Philosophy of Well-Being, ed. Guy Fletcher (London: Routledge, 2016), 331-341. 172 Emanuel and Emanuel, “Four Models…” 2221. 173 Seana Valentine Shiffrin’s account of paternalism is built on the claim that the substitution of judgment is the feature of paternalism that always makes it objectionable. See Shiffrin, “Paternalism, Unconscionability Doctrine, and Accommodation”, 216-218.

114 Presumably the doctor assumes that she is a superior judge of what is in the patient’s health- related interests than the patient, and this is a reasonable assumption.174 However, many believe that the doctor’s superior judgment about what is in the patient’s health-related interests does not imply that the doctor has superior judgment about the patient’s overall interests. And there is nothing prohibiting the doctor who intervenes on behalf of health from agreeing with this claim.

A doctor who intervenes to advocate for health need not believe that they are better positioned to know what is in the patient’s best interests; they just know what’s good for the patient’s health, and they care about protecting the patient’s health.

To see this, consider an analogy between the doctor-patient relationship, and the relationship between college instructors and students. If a student shows signs of slacking off on assignments, we can anticipate that many college instructors will ask students to come meet with the instructor; the instructor may encourage the student to spend more time on his next paper, to give himself time to read it over and make edits, or to meet with the instructor to go over an early draft. Through these suggestions, the instructor is encouraging the student to put more time and more energy into an education-promoting activity.

Note, however, that it may actually not be in the student’s best interest to dedicate this time to their paper. College students may have other courses that are more crucial to their central field of study, to which they should be dedicating most of their study time. It is also an unfortunate reality of our higher education system that many students must work part- or even full-time jobs in order to pay their way through college. If dedicating more time to their paper

174 For a clear defense of the ways in which doctors’ judgment about medical well-being are often superior, see Groll, “Medicine and Well-Being”, 504-506.

115 required compromising on these other important projects, then taking the time to improve on the paper may actually not be in their best interests.

Does this imply that the instructor who makes such a recommendation is necessarily ignorant of or insensitive to the fact that their recommendation might not promote the student’s overall well-being? Absolutely not. Many college instructors are aware of the diversity and breadth of external pressures to which students are subject, and many college instructors are sensitive to the fact that they are often ignorant of the pressures (or lack thereof) a particular student faces. Thus many college instructors likely do not assume that they are better positioned than the student to know what is in the student’s overall well-being.

Nonetheless, it does not follow that there is something misguided about the instructor’s attempt to get the student to spend more time on their assignment. In fact, there would seem to be something amiss about an instructor who felt that they could push students to spend more time on an assignment only if (a) the student had made clear that their education was their top priority; or (b) the instructor could come up with sufficient justification for arguing that the student’s decision not to work hard on the assignment was deficient in some way.175 Just as we expect doctors to care about and advocate for patient health, we expect instructors to care about and advocate for student education. And this obtains even in cases where the instructor is humble about their insight into the student’s overall well-being.

175 One might object that there are cases where something would be amiss if an instructor knew that a student had deprioritized their education for the sake of other important projects and yet pressured students to work hard on the assignment nonetheless. I think it is entirely correct that there are cases where pressuring a student to spend more time on their class is inappropriate, and that an instructor could be rightly criticized for doing so. Moreover, we can expect of instructors that they be sensitive to patients’ non-education-related interests; an instructor who completely ignored their students’ other projects and values would be failing to engage with the student’s overall well-being appropriately. However, both of these concessions are compatible with the claim that instructors nevertheless ought to have the authority to push back on student deprioritization of their education for the sake of other projects. Thanks to Tristram McPherson for pushing me on this point.

116 The instructor-student analogy helps us see how a doctor could find it appropriate to intervene for the sake of encouraging a patient to go with a health-promoting course of action while refraining from an assumption that their judgment about the patient’s overall well-being is superior to the patient’s. Consider INSULIN. Dennis recognizes that Per’s request to begin insulin right away is derived from Per’s prioritization of his hedonistic lifestyle over a conservative approach to his medical care. Moreover, Dennis might appreciate that Per really cares about hedonism; Dennis need not believe that Per’s commitment to hedonism is unserious or that Per is confused in his judgment about what matters. However, this recognition is compatible with acting as a patient health advocate and trying to secure a compromise with Per in the name of promoting Per’s health. Dennis is concerned with Per’s health over Per’s desire for hedonism, and Dennis judges that Per’s decision poses a threat to his health. Thus Dennis’ deliberation need not include a judgment that Per’s decision poses a serious threat to Per’s well- being; Dennis may be agnostic on this question.

The difference in attitudes towards patient expertise is an important disanalogy between the traditional paternalistic approach and the patient health advocacy role. Now, I grant that many doctors may in fact believe that their judgments about patient well-being are superior to the patient’s judgment. This may often be part of the doctor’s motivational structure. However, decreased confidence in patients’ expertise about their overall well-being is not part of the justificatory story for the doctor’s authority to push back on patient decisions. The benefit to patient well-being of a doctor that advocates for individual health, especially given that individual health is often devalued or ignored by others, is sufficient to justify awarding doctors a share of decisional authority. However, this is compatible with the doctor being humble about

117 her insight into the patient’s overall well-being. Therefore, the appeal to patient health advocacy need not downplay the patient’s expertise with respect to her overall well-being.

V. The Potential Instability of Patient Authority

I have argued that patient health advocacy, while justified on paternalistic grounds, can avoid the assumption that doctors have better insight into patient well-being than patients.

However, the threat of paternalism still looms. If the appeal to patient health advocacy justifies awarding the doctor some share of decisional authority, then this provides a successful defense of the partnership model; doctors’ authority to participate in medical decision-making is secure.

However, this brings us back to the dilemma at the end of the previous chapter. While the partnership model is an attractive ideal of doctor-patient interaction, it is in tension with a normative foundation that awards patients the right to self-determination, which involves the right to decide and act on matters that directly concern one’s body and health. I suggested that we have one of two choices: either we endorse the partnership model, or we embrace a normative foundation that includes the commitment to respect the patient’s right to self- determination. I have argued above that we have good reason to endorse the partnership model of the doctor-patient relationship.

However, one might point out that giving up the commitment to respect the patient’s right to self-determination now renders the partnership model’s commitment to patient participation unstable. As we saw earlier, the rejection of paternalism has largely come through the assumption that patients are entitled to participate in medical decision-making in part because they have a right to make decisions and pursue courses of action central to their lives; from this broader right, a right to control decisions regarding one’s medical care is derived. Even if the

118 partnership model would like to ensure that patients have a secure share of decisional authority, how can this be achieved without an appeal to the patient’s right of self-determination?

This challenge shows that the partnership model has a serious explanatory burden to meet. Specifically, can the partnership model do justice to anti-paternalist intuitions about the importance of patient participation without the appeal to the right of self-determination? Only if the partnership model can meet this challenge will it be a serious contender as an attractive model of the doctor-patient relationship. In the next chapter, I will argue that the commitment to respect the patient’s right of self-determination can be abandoned with little cost; patient participation in medical decision-making can be secured through an appeal to avoiding domination.

119

Chapter 4: A Non-Domination Approach to Patient Authority

While the partnership model and the contractor model of the doctor-patient relationship may often result in decision-making processes that look similar, they envision very different distributions of decisional authority. The partnership model’s vision of medical decision-making requires doctors and patients to share decisional authority. The contractor model awards complete decisional authority to patients; doctors may then be permitted to participate on the basis of independent justification.

In the previous chapter, I argued that we ought to adopt the partnership model over the contractor model. The partnership model’s allocation of decisional authority to the doctor preserves the doctor’s authority to try and persuade the patient to revise competent, informed decisions the patient has reached. The authority to persuade patients to revise decisions about their care is crucial to the doctor’s role as a patient health advocate. Because patients often deprioritize considerations about their health for the sake of pursuing other goals and projects, and because poor health can seriously undermine individual well-being, the doctor’s role as a patient health advocate is a valuable protective institution for individual well-being. Part of this health-promoting activity requires doctors having the authority to try and persuade patients to make different decisions, ones that do better with respect to promoting their health. In other words, doctors must have the authority to advocate for patient health to patients. The partnership model preserves this authority for doctors; the contractor model does not. Therefore, the

120 partnership model’s preservation of the doctor’s role as patient health advocate gives us prima facie reason to endorse it over the contractor model.

However, the partnership model faces a challenge. Because doctors and patients share decisional authority on the partnership model, the normative foundation for the partnership model cannot include a commitment to respect the patient’s right of self-determination. The right of patient self-determination specifies that patients have sole authority to make treatment decisions. This right has been central to rejecting medical paternalism by removing sole decisional authority from the doctor, but it also conflicts with the partnership model’s allocation of a share of decisional authority to the doctor. If the partnership model gives up the commitment to respect the patient’s right of self-determination, then the partnership model closes itself off to the most compelling argument for awarding any decisional authority to the patient.

In this chapter, I develop an alternative account of the justification for awarding decisional authority to patients. Rather than appeal to the importance of respecting the patient’s right to self-determination, I argue that patient authority to participate in and make treatment decisions is grounded in the importance of minimizing domination. Patients have a strong interest in not being dominated by their doctors. This approach can do justice to the anti- paternalist developments to our conception of proper medical decision-making without stripping the doctor of a share of decisional authority.

I begin by laying out the challenge to the partnership model in more depth. Not only must proponents of the partnership model demonstrate that their account avoids collapsing back into the paternalistic model, but also, they must demonstrate that their account does not come at the expense of important anti-paternalist insights into the proper role for patients in medical

121 decision-making. I then explain in greater depth why the commitment to respect patient self- determination conflicts with the prospects for shared decisional authority: respect for patient self- determination generally entails a commitment to refrain from interference with individual decision-making.

I then propose an alternative interest that can capture what goes wrong with the paternalistic model. The paternalistic model is bad not because it allows for too much interference, but because it allows the doctor to dominate the patient. After explaining the distinction between domination and interference, I show how the patient’s interest in not being subject to domination justifies a rejection of the paternalistic model.

However, there remains a key distinction between rejecting the paternalistic model, and securing for patients a share of decisional authority that reflects valuable anti-paternalist insights about proper medical decision-making. I argue that satisfying the patient’s interest in not being subject to domination can secure the kind of robust patient participation and control over medical decision-making that many anti-paternalists endorse. However, satisfying the patient’s interest in not being subject to domination is compatible with doctors possessing a share of decisional authority, such that doctors can retain the authority to persuade patients to revise decisions they have already reached.

I conclude by considering an objection that the non-domination approach fails to capture some key anti-paternalist insights; I argue that the considerations it neglects are not weighty considerations in the context of the majority of medical decision-making. Therefore, through an appeal to satisfying the patient’s interest in not being subject to domination, the partnership

122 model can satisfactorily secure a robust share of patient decisional authority without appealing to the patient’s right of self-determination.

I. Preserving Anti-Paternalism

The anti-paternalist insights into the patient’s role in medical decision-making can be captured by two claims. First, patients are entitled to participate in medical decision-making; their participation in medical decision-making should not be conditioned on the likelihood that their participation will promote their well-being. Second, in cases where doctors and patients faultlessly disagree over the appropriate course of action, doctors should ultimately defer to patients’ decisions. Because no one has a stronger interest in the outcome of a treatment decision than the patient, it is inappropriate to allow doctors to refuse to act on the patient’s decision

(absent sufficient justification for the refusal). These are two anti-paternalistic conditions that any model of medical decision-making should be able to accommodate. Can these conditions be met by the partnership model without needing to appeal to the right of self-determination?

One might try to justify giving patients decisional authority by an appeal to the need to protect patients from harm. When medical paternalism was the dominant model, doctors had no obligation to inform or consult their patients in the course of medical decision-making, and doctors were constrained primarily by an internal commitment to do no harm. As a result, patients were susceptible to inadvertent or deliberate abuse. Protecting the patient from such abuse requires patient participation in decisions about their care; if patients are directly involved in decision-making about their care, then patients will be able to make informed decisions about their care that minimize harm. Thus, the argument goes, patient participation can be justified by an appeal to protecting the patient from harm, without appeal to the right of self-determination.

123 But while there is a clear need to protect the patient from harm, it is not clear that this entitles patients to participate beyond the right to refuse treatments.176 If there were sufficiently strong institutional checks that ensured doctors did not make decisions that could harm patients

(for example, an institutional review committee, or a clinical ethics consultant), then it is unclear what grounds there would be for ensuring patient participation in medical decision-making.

Furthermore, my defense of the value of patient health advocacy points to the multitude of external pressures a patient may face that encourage her to make compromises to their health; even if strategic deprioritization of one’s health is rational, it may lead to decisions that are harmful to patients. If there were reason to believe that patients were more likely than an institutional figure to deprioritize the patient’s own health in medical decision-making, then the imperative to protect patients from harm would not secure an entitlement for patient participation in medical decision-making. Only a right of refusal would be necessary to ensure that doctors could not force treatments on patients. Therefore, protection from harm is almost as precarious in its ability to secure patient participation as mere promotion of patient well-being.

One might also try to justify giving patients decisional authority exclusively by an appeal to the patient’s relative expertise about their overall well-being. Because the paternalistic model treats health as the only relevant dimension of patient well-being in medical decision-making, it fails to recognize patients’ broader values, projects, and concerns as relevant to medical decision-making. This is certainly an impoverished approach to medical decision-making, because medical care affects patients’ non-health-related values and projects. Good medical

176 Neil Manson and Onora O’Neill argue that this is the most compelling justification for an informed consent process. Manson and O’Neill, Rethinking Informed Consent,75.

124 decision-making should be sensitive to how various treatments affect the patient’s overall well- being.

At the end of the previous chapter, I noted that the doctor’s role as a patient health advocate differs from the traditional paternalistic role of the doctor in its humility with respect to the doctor’s insight into patients’ overall well-being. The traditional paternalistic account of the doctor envisions doctors as exclusively concerned with patient health, with no concern for patients’ other projects and values. By contrast, the account of doctors as patient health advocates envisions doctors as predominantly concerned with patient health, but sensitive to the patients’ other projects and values. And while the doctor generally has greater expertise than the patient with respect to matters of health, the partnership model is sensitive to the fact that patient health is not exhaustive of the concerns on the table in medical decision-making.

How could this justify awarding decisional authority to patients? Recognizing that the doctor’s expertise is with health-related matters and that doctors are primarily concerned with patient health is compatible with the claim that patients are better epistemically positioned than doctors with respect to other dimensions of their well-being. For example, patients are better positioned than doctors to know how the expected effects of a treatment will impact their ability to pursue other projects that contribute to their well-being. Given that medical decision-making ought to be sensitive to the patient’s broader values and projects, as well as their health, patient input is an indispensable contribution to medical decision-making. Thus patient authority to participate in decision-making could be secured by an appeal to patient expertise about their own well-being.

125 This expertise-driven argument cannot be the whole story, however. One crucial feature of the anti-paternalist consensus was that it secured patient decisional authority even if there was reason to think that the patient’s insight into her overall well-being was worse than the doctor’s.

The intuition that patients have an interest in actively participating in decisions about their care remains, even when they are in a poor epistemic position relative to the doctor. If the normative foundation ties patients’ share of decisional authority to their expertise over their well-being, patients may be justifiably stripped of their share if they lack this epistemic advantage over the doctor. This would open patients up to being excluded from decisions about their care in cases where they still have a strong interest in participating in these decisions. If the patient’s share of decisional authority is justified by patient expertise, then patients will be vulnerable to exclusion from medical decision-making in cases where they still have an interest in participating. And so, even if patients’ general expertise about their well-being provides good reason to include patients in medical decision-making, securing the patient’s share of decisional authority requires more.

This is where the challenge to the partnership model becomes fully apparent. The intuition that patients just have a morally legitimate interest in participating in and making decisions about their care is powerful, particularly given the intimacy and importance of these decisions to one’s life. This is the intuition that drives the commitment to respect the patient’s right of self-determination. But insofar as self-determination is understood as the right to make decisions that are central to one’s life, we find ourselves back at a unilateral, rather than shared, distribution of decisional authority. Thus the partnership model must be able to capture the moral legitimacy of the interest that patients have in participating in treatment decisions, without

126 directly undermining the prospects for shared decisional authority between the doctor and patient.

Perhaps proponents of the partnership model should settle for the claim that patients do not have a morally legitimate interest in actively participating in and making treatment decisions outside of the distinctive epistemic contribution they make; as long as patients retain expertise- based authority and the right of refusal of treatments, patients are guaranteed the degree of decisional authority appropriate for their morally legitimate interest in treatment decision- making. But this approach fails to preserve the valuable anti-paternalist insights into the proper role for the patient in medical decision-making; if the partnership model is to be a plausible account of the doctor-patient relationship, it should be able to preserve (a) the patient’s entitlement to participate in medical decision-making; and (b) the expectation that doctors will defer to patient decisions about their care in cases of intractable and faultless disagreement.

In the remainder of this chapter, then, I offer an alternative account of the moral significance of the patient’s interest in participating in and making medical decisions. The problem with the patient’s right to self-determination is its enshrinement of the importance of non-interference. In what follows, I argue that we should abandon the idea that the importance of patient control in medical decision-making is grounded in the value of making decisions without interference. Rather, the importance of patient control in medical decision-making is grounded in their interest in not being subject to domination.

II. The Non-Domination Approach to Rejecting Paternalism

The partnership model faces a challenge. The claim that patients are entitled to participate in and control the outcome of medical decision-making, independent of the quality of their

127 contributions or decisions, is highly plausible. However, it is difficult to capture the anti- paternalist insights about patient involvement without appealing to the patient’s right of self- determination. As we have seen, the partnership model is incompatible with a normative foundation that includes the patient’s right of self-determination. Thus it appears that the partnership model sacrifices important improvements to our idea of ethical medical decision- making made by anti-paternalists.

To address this challenge, I will begin by examining why the commitment to respect the patient’s right of self-determination awards decisional authority exclusively to the patient. The primary source of conflict between the commitment to respect the patient’s right of self- determination and shared decisional authority is the assumption that the right of self- determination entails a presumption against interference. As Beauchamp and Childress put it:

“Virtually all theories of autonomy view two conditions as essential for autonomy: liberty

(independence from controlling influences) and agency (capacity for intentional action).”177 It is the first condition—the condition of liberty—that creates the complication for sharing authority.

Where outside influences threaten one’s control over a decision or action, one’s liberty and so one’s self-determination is threatened. This commitment to non-interference is emphasized even more when Beauchamp and Childress state, “[Respect for autonomy] requires more (my emphasis) than non-interference in others’ personal affairs… A fundamental obligation exists to ensure that patients have the right to choose, as well as the right to accept or decline

177 Beauchamp and Childress, Principles of Biomedical Ethics, 102. Here they use ‘autonomy’ as I have used ‘self- determination’. As noted in Section III of Chapter 2, what constitutes a controlling influence is contentious. I have argued for a more expansive interpretation (although certainly not the most expansive interpretation, as evidenced by arguments that the mere provision of information can be an objectionable form of interference).

128 information.”178 Thus enjoying the right of self-determination, it is presumed, requires enjoying a presumption of non-interference.

If non-interference is central to self-determination, then this creates a presumption against external intervention—where ‘external intervention’ may include merely offering unsolicited information, according to Beauchamp and Childress. There may be cases in which an agent invites external participation or intervention, or there may be cases in which intervention is appropriate given facts about the decision-making context or competing values at stake, but these are treated as exceptions.179 However, in these cases, the presumption against external intervention has been defeated. If the patient’s right of self-determination is part of the normative foundation for a model of the doctor-patient relationship, then this creates a presumption against doctor interference with patient decisions.

However, interference with patient decisions is precisely what is required in order for the doctor to exercise her authority to try and convince a patient to change her mind once a decision has been reached. If there is a presumption against interference, then doctors cannot be entitled to try and persuade patients to revise their decisions. Their attempts to persuade patients to revise their decisions must be justified by appeal to the patient’s overreach, or by a failure of patients to exercise their authority properly. However, the authority to try and persuade patients to revise decisions—specifically, to try and persuade patients to revise their decisions for the sake of avoiding poor health outcomes or improving health outcomes—is valuable in its contribution to patient health advocacy. Therefore, the commitment to respect the patient’s right of self-

178 Beauchamp and Childress, Principles of Biomedical Ethics, 107-110. For an extended discussion of the claim that patients may have a right “not to know” certain information they do not desire to receive, see Roberto Andorno, “The Right Not to Know: An Autonomy-Based Approach” Journal of Medical Ethics 30, no. 5 (2004): 435-439. 179 By ‘exceptions’, I do not mean to imply infrequency. I simply mean to imply that these are cases in which a presumption in favor of non-interference has been defeated.

129 determination, while a successful bulwark against the paternalistic model, goes too far in the pursuit of anti-paternalism.

In order to see what progress proponents of the partnership model can make without the commitment to respect the patient’s right of self-determination, it is worth reassessing precisely what is so bad about the paternalistic model. What spurred professionals to focus on the patient’s right of self-determination? Consider the paradigmatic cases of medical paternalism: doctors deciding to withhold important information about their condition from patients in order to keep their spirits up180, prescribing treatments without any consideration of how the treatment might affect patients in other areas of their lives181, expecting deference to doctors’ decisions without room for discussion or information182, and providing patients little institutional recourse when doctors would make errors.183

The paternalistic model is bad, then, because it allows patients to be left in the dark about what is happening to them and about what they can expect out of treatment. It permits doctors to exclude patients from providing input into decisions that are important to them, and it encourages patients to view their doctors’ decisions as non-negotiable, even if those decisions are unresponsive to the patient’s broader interests. Moreover, it leaves patients feeling as though their doctors are unimpeachable; there is no point in pushing back against their doctors’

180 Faden and Beauchamp, History and Theory, 37-38. 181The “Iphigenia Jones” case, is a key example of this. Against his professional judgment, he decided to inform her about lumpectomy coupled with radiation therapy as a substitute for mastectomy, leading her to request this alternative therapy in order to avoid severe scarring. The doctor’s decision to inform and consult her about this was extremely controversial among his peers. Katz, Silent World, 90-95. 182 “The obedience of a patient to the prescriptions of his physician should be prompt and implicit. He should never permit his own crude opinions as to their fitness, to influence his attention to them.” Code of Ethics of the American Medical Association (adopted May, 1847), Chapter 1, Article 2, Section 6. 183 Konold, History of American Medical Ethics, 45-52.

130 decisions or attempting to hold them accountable due to the institutional and social status doctors enjoy on the paternalistic model.

When unpacked in this way, it is not clear that the badness of the paternalistic model is its neglect of the importance of non-interference with personal decisions. Even patients who would rather defer to their doctors about medical decisions still would want to avoid a relationship that involves the features above. I propose that we reconsider the badness of the paternalistic model not in terms of interference, but in terms of domination.184

Domination is not concerned with actual interventions, but with the power to arbitrarily intervene in decision and action.185 Being in a relationship where one party has the power to arbitrarily intervene in the other’s decision and action is sufficient for the disempowered party to be dominated, irrespective of whether the empowered party actually intervenes. Interference, by contrast, is concerned with actual intervention; the extent to which an individual is free depends on the amount of interference to which she is subjected.186

To illustrate, imagine an enslaved person who has the good fortune of having a benevolent master, a master who believes that it is important to treat all others with great kindness and whose disposition is to treat others with civility. This master gives the enslaved person latitude in his decision-making and action that a free person enjoys; however, the master

184 There is only one other person to my knowledge who has developed a non-domination based defense of informed consent. However, we have different aims, and so her arguments are largely inapplicable to the work I put non-domination to here. See M. Victoria Costa, “Freedom-Based Arguments for Informed Consent: The Neo- Republican Alternative”, Journal of Social Philosophy 46, no. 3 (Fall 2015): 357-372. 185 Philip Pettit, “Freedom as Antipower”, Ethics, 106, no. 3 (April 1996): 576-604. 186 It should be noted that those concerned with non-interference in medical decision-making may also end up advocating for doctor-patient relationships that minimize domination. Therefore, they may be happy to recognize non-domination as a value. However, there is particular value in focusing on non-domination to the exclusion of non-interference when thinking about the partnership model, insofar as non-domination is better compatible with kinds of intervention characteristic of collaborative decision-making. Thanks to Piers Turner for emphasizing this point.

131 does not free the enslaved person, because the master fears the social ostracization that may result from rejecting a dominant social institution.

Is there any important difference between the enslaved person’s condition and a free person’s condition?187 Suppose that for any given decision or action, both the enslaved person and the free person will experience the same amount of interference; the fact that one person is enslaved does not ultimately change the amount of interference to which he is subject. If the relevant interest for individuals is avoiding interference, then there is no morally significant difference between the condition of the enslaved person living under this benevolent master and the person who has no master.

But there is a morally relevant distinction between the enslaved person’s condition and the free person’s condition; specifically, the conditions surrounding their respective enjoyments of non-interference. The free person enjoys non-interference by way of independent arrangements that protect him from external impediment or intervention. Should an individual attempt to interfere with the free person’s choice and action, the free person would have some third-party method for protecting himself against such interference. By contrast, the enslaved person’s enjoyment of non-interference depends on the master’s permission; should the master suddenly become cruel and domineering, the enslaved person’s enjoyment of non-interference would be gone. Despite the fact that the free person and the enslaved person experience the same

187 Often this example is formulated slightly differently, to compare a slave who enjoys little to no interference and a slave who is subject to a great deal of interference. If freedom is non-interference, then we should evaluate the first slave as freer than the second slave. Pettit and other republicans find this absurd. However, I set aside here the debate between liberals and republicans about whether we should understand liberty as non-interference or as non- domination. It is enough for my purposes to note that non-interference and non-domination are two distinct conceptions, that respect for self-determination is generally understood as requiring non-interference, and that the importance of enjoying non-interference in the context of medical decision-making can coherently be challenged. I offer non-domination as the primary interest of importance that is set back by the paternalistic model.

132 degree of actual interference, the absence of interference the enslaved person enjoys is dependent entirely on the master’s good will; it is not secure.188

Minimizing domination, then, is not a matter of minimizing interference in and of itself – it may actually allow for a myriad of interferences. Minimizing domination requires examining the power to interfere arbitrarily that some have over others. Insofar as we fail to protect individuals against being subject to domination, we expose them to potential abuse and we render any enjoyment of non-interference contingent on the whims and judgment of the empowered party.

Second, domination is concerned with the power to interfere arbitrarily with one’s choices or actions.189 Being subject to frequent interference is not necessary for being dominated, but it is also not sufficient. One could be subject to interference with some regularity, or could be in a relationship in which interference is commonplace, and yet not be dominated. Only if the empowered party is capable of interfering arbitrarily with the disempowered party is the relationship an instance of domination.

‘Arbitrariness’ is concerned with a failure to be forced to track the interests of the disempowered party.190 More precisely, the less the empowered party is compelled to track the

188 Skinner makes this point forcefully in response to some who attempt to broaden the conception of negative liberty as non-interference to probable interference in order to accommodate the republican intuition. See Quentin Skinner, “Freedom as the Absence of Arbitrary Power” in Republicanism and Political Theory, eds. Cécile Laborde and John Maynor (Oxford: Blackwell Publishing, 2008), 98. 189 Philip Pettit, Republicanism: A Theory of Freedom and Government, (Oxford: Oxford University Press, 1999), 55-58. It is worth noting that Pettit has abandoned talk of ‘arbitrariness’ in favor of discussing ‘alien control’ or ‘uncontrolled interference’. For the introduction of ‘alien control’, see Philip Pettit, “Three Axioms, Four Theorems” in Republicanism and Political Theory, eds. Cécile Laborde and John Maynor (Oxford: Blackwell Publishing, 2008), 102-130. For discussion of ‘uncontrolled interference’, see Philip Pettit, On the People’s Terms: A Republican Theory and Model of Democracy, (Cambridge: Cambridge University Press, 2012), 58. 190 It has become common to divide accounts of ‘arbitrariness’ into two camps: procedural accounts and substantive accounts. Procedural accounts identify arbitrariness in terms of the absence of common knowledge external constraints on the empowered’s capacity to exercise their power. Substantive accounts identify arbitrariness as the

133 disempowered’s avowed interests when deliberating about whether and how to act regarding a matter that affects the disempowered party, the more dominating the relationship. Because we are concerned with a case of interpersonal decision-making among options that are all sanctioned by institutional considerations, the natural interpretation of ‘avowed interests’ is the reported preferences of an individual. Thus minimizing domination in a relationship requires compelling the empowered party to be responsive to the reported preferences of the disempowered party in deliberation about how to resolve a practical question that affects the disempowered party.

More specifically, I will understand ‘arbitrariness’ along the lines of Christopher

McCammon’s account of arbitrariness as “deliberative isolation”.191 One is in a position of deliberative isolation if one is empowered to form private judgments about how to act with respect to another.192 An individual in deliberative isolation is under no pressure to consult with others about whether interference will or should occur; it is entirely up to that individual whether

absence of external constraints that force the empowered’s capacity to exercise their power to interfere to track the subject's “welfare and worldview”. I bypass this distinction, as I think it obscures some important ways in which “substantive” conceptions are procedural and “procedural” conceptions are substantive. The most compelling accounts of arbitrariness are not clear-cut in the way demanded by Lovett’s taxonomy. For a discussion of the distinction, see Frank Lovett, A General Theory of Domination and Justice, (Oxford: Oxford University Press, 2010), 112-113. 191 Christopher McCammon, “Domination: A Rethinking” Ethics 125, no. 4 (July 2015): 1046-1047. The primary difference between Pettit’s account of arbitrariness as “alien control” account and McCammon’s “deliberative isolation” account is the connection of interference to the will. For Pettit, interference is less dominating the more the locus of control is ultimately the disempowered party. Pettit’s paradigmatic case of non-dominating interference is a Ulysses pact; by interfering with one on the grounds that one has ordered such interference, the interference is not divorced from our will, but an expression of our will. The more the empowered party’s capacity to interfere is compelled to follow the dictates of our will, the less dominating the relationship. However, this just seems to make non-domination not that interestingly different than non-interference. Specifically, it loses out on the interesting way in which we can be interfered with without being dominated. If the relevant distinction between dominating interference and non-dominating interference is the connection to our will, then it just seems like non-domination is a matter of being free from external controlling influences. Pettit’s account of arbitrariness as “alien control”, then, is unhelpful when thinking about an alternative to non-interference. Thanks to Dana Howard for discussion on this point. 192 I use ‘private’ in the way Elizabeth Anderson does in discussing the idea of ‘private government’: “If something is private to you, that means it is your business, and you may exclude others from making it any of theirs.” Elizabeth Anderson, Private Government: How Employers Rule Our Lives and Why We Don’t Talk About It, (Princeton: Princeton University Press, 2017), 43.

134 to give the disempowered’s interests any weight, or to incorporate certain considerations as relevant.193 In order to decrease the extent to which the power to interfere is dominating, we must reduce the extent to which the empowered party operates in deliberative isolation.

Deliberative isolation is improved by forcing an individual to deliberate with others. This reduces the privacy of the judgment. But a large quantity of deliberators alone is insufficient to address domination. There is no meaningful difference between the position of citizens under a tyrant who forms practical judgments in true isolation, and the position of citizens under a tyrant who consults a circle of ideologically aligned yes-men prior to forming practical judgments.194

Thus, deliberative isolation is reduced as the empowered party is compelled to be exposed in deliberation to a greater variety of perspectives.

Yet the power to interfere will still be dominating if the introduction of a variety of perspectives fails to do justice to the disempowered’s interests. This introduces two further considerations. First, the power to interfere from a position of deliberative isolation will be reduced as the disempowered have more secure representation of their interests in deliberation.

That is, the greater the guarantee that the reported preferences of the disempowered will be included among the relevant practical reasons in deliberation, the less the empowered party is capable of interfering from a position of deliberative isolation. Finally, the power to interfere from a position of deliberative isolation will be reduced as the disempowered have more secure consideration of their interests in deliberation. That is, the greater the guarantee that the empowered party gives appropriate weight to the disempowered’s interests in deliberation, the

193 McCammon, “Domination: A Rethinking”, 1046. While McCammon discusses this in terms of the “relevant practical reasons”, it is clear that in many instances, the disempowered’s interests and preferences with respect to the resolution of a practical question will count among the relevant practical reasons for or against an action. Medical decision-making is an obvious instance of this. 194 McCammon, “Domination: A Rethinking”, 1047.

135 less subject to domination they are.195 Guaranteed representation and consideration of the disempowered’s interests in deliberation is important for ensuring that the empowered party’s deliberation is not fleshed out by private judgments about the relevance or relative weights of various interests. Minimizing deliberative isolation requires ensuring that the interests of the disempowered party are not unfairly discounted.

It is important to note that minimizing deliberative isolation is perfectly compatible with excluding the person themselves from deliberation. While that person’s interests should be represented in deliberation, it does not necessarily affect one’s status as an undominated agent that one be the representative of one’s own interests in deliberation.196 In other words, the interference to which we are subject must be responsive to our interests, but it need not be responsive to our will. Thus minimizing domination does not necessarily require direct inclusion of the disempowered party himself in deliberation.

To summarize, A dominates B to the extent that A has the capacity to interfere on an arbitrary basis with B, where interference is arbitrary when done from a position of deliberative isolation.197 The more deliberatively isolated A is in their capacity to interfere, the more B is subject to domination.

How does domination negatively affect individuals? First, domination makes one’s well- being unstable. In the relationship between the enslaved person and the benevolent master, the enslaved person’s well-being is largely contingent on the desires, whims, and dispositions of the

195 McCammon gestures at this when he says, “Slave masters might regularly consult their slaves, but they remain deliberatively isolated from them because it’s entirely up to the slave masters whether they give what they hear any weight.” McCammon, “Domination: A Rethinking”, 1047. 196 McCammon discusses this in terms of the “relevant practical reasons”. It is clear that in many instances, the disempowered’s interests and preferences with respect to the resolution of a practical question will count among the relevant practical reasons for or against an action. Medical decision-making is an obvious instance of this. 197 This schema is borrowed from Pettit. Pettit, Republicanism, 52.

136 master. Should the master suddenly become cruel, be overcome by extreme anger, or even conclude that harming the enslaved person is more advantageous to the master than being benevolent, the enslaved person has little to no protection against suffering serious harm. Thus the well-being of the dominated individual is in the hands of the dominating individual.

Note that this instability can obtain even in instances of local domination. Even if an individual is subject to domination only in one domain pertinent to well-being, the dominating individual may have the power to cause significant reduction to an individual’s well-being through harmful exercises of their power within that particular domain. An instructor who is empowered to use their epistemic advantage over their students to instill them with false beliefs may be able to make it more difficult for their students to navigate the world well. Thus one need not be subject to domination in all areas of life in order for subjection to domination to render one’s well-being precarious.

Second, domination renders one’s autonomy (that is, one’s ability to pursue goals and to engage in life-shaping activity) precarious. If the dominating party is empowered to interfere with the dominated party without being compelled to track the interests of the dominated party, then one’s ability to engage in planning activity and to pursue long-term goals will be significantly impeded. Even in the case of the benevolent master, the dominated party’s knowledge that the dominating party has the capacity to interfere with their decisions or actions without any regard for their interests makes it difficult to anticipate whether, when, and how interference might occur. Thus the kind of commitments that are central to autonomy will always be attenuated; there will always be a specter of uncertainty that compromises them.198

198 Pettit, Republicanism, 85-86.

137 Third, domination impedes one’s ability to navigate the world as a social equal. Non- domination is concerned not only with the objective structure of relationships; it is also concerned with intersubjective perception. Part of enjoying non-domination involves enjoying undominated status among one’s peers.199 To see this, note that there may be a way for the dominated party to secure herself against the first two costs of domination. By successfully ingratiating herself with the dominating party, the dominated party might be able to enjoy a high degree of confidence that she will be uninterfered with. This might ensure the kind of stability in well-being and autonomy often lost when subject to domination. However, that her confidence in being uninterfered with depends entirely on the dominating party’s good will towards the dominated party impedes the dominated party’s social standing. As Pettit puts it nicely, “...free persons can walk tall, and look others in the eye...they do not have to bow or scrape, toady or kowtow, fawn or flatter; they do not have to placate any others with beguiling smiles or mincing steps.”200 It is important not only to our standing as social equals, but also to our perception of ourselves as social equals, that we be able to assert ourselves as persons whose interests must not be disregarded or discounted.201

Given the effects of domination on our ability to operate as agents who command equal recognition and status in the world, we have a strong interest in not being subject to domination.

Where there are power differentials within society, the empowered party must be checked by external constraints that prevent them from being able to wield their power arbitrarily over the

199 Pettit, On the People’s Terms, 82. 200 Pettit, On the People’s Terms, 82. 201 This is a similar sentiment to that expressed by Stephen Darwall in his reference to “second-personal authority”; if you step on my foot, my demand that you move it should not be seen as indicating to the reasons of suffering that there are, but rather my making a claim on you that I am in position to make in virtue of being a free and rational agent. Stephen Darwall, The Second-Person Standpoint: Morality, Respect, and Accountability, (Cambridge: Harvard University Press, 2006), 3-10.

138 disempowered party. Moreover, these external constraints must be common knowledge; absent recognition of these constraints, there may still be a failure of either the empowered or the disempowered party to recognize the undominated status of the disempowered party.202

Recognition of non-domination as an independent interest from non-interference, then, is important when we examine possibly objectionable social relationships and institutional settings.

Having provided an account of domination, we can now reevaluate the paternalistic model. The paternalistic model awards the doctor complete practical authority over treatment decisions on the grounds that the doctor is supposedly (a) the relative expert with respect to the decision, and (b) altruistically motivated. But the paternalistic model exposed patients to coercive and deceptive practices in the name of promoting patient well-being, neglected patients’ non-health-related interests or projects that might be affected by the decision, and left patients feeling like they had little recourse in cases where doctors harmed them.

The paternalistic model of the doctor-patient relationship seems to be a clear case of a dominating relationship. Discretionary coercion and deception, even if moved by concern for patient well-being, undercuts the patient’s guarantee that doctors are exercising their power from a place of deliberative isolation. If the doctor is empowered to force or pressure the patient to comply with a treatment, or if the doctor is empowered to deceive or withhold key information from the patient, then the patient has little recourse in challenging the doctor’s decisions. Even if there are external institutional mechanisms that allow patients to challenge decisions, these challenges cannot be leveled if the patient is forced into compliance or deceived about the nature

202 Pettit, Republicanism, 58-61.

139 of the decision. And the ability for recourse against the empowered party is a crucial mechanism for ensuring that the disempowered’s interests are not disregarded.

Moreover, the quality of the patient’s care is wholly dependent on the doctor’s judgment; the doctor is under no pressure to seek outside input or input from the patient herself. If judgments about treatment are solely under the doctor’s purview, then patients are at risk of their interests being cast aside for the sake of personal or professional gain. The primary disincentives for doing so are conscience and reputation. Even if the doctor in fact never deviates from the altruistic commitment and exercises good judgment about what is in the patient’s interests, the doctor’s judgment is private; it is not accountable to anyone. Thus the paternalistic model secures for the doctor not only the power to make medical decisions on behalf of their patients, but also the power to make medical decisions on behalf of their patients from a position of deliberative isolation.

Finally, the paternalistic model encourages the perception of the doctor as unimpeachable. Doctors are to be treated with reverence and to be deferred to. Patients have no real place in medical decision-making; they are simply there to be treated. The “good patient” is the silent patient who complies, who does not ask questions, who does not cause trouble.203 The paternalistic model, then, encourages doctors to perceive patients as subordinate to them. On the paternalistic model, patients are not social equals; they are pathetic beings to be cared for.

Moreover, the paternalistic model encourages patients to perceive themselves as unequal to their doctors; patients are to be grateful for their doctors, to be loyal to them, and not to disturb or

203 Faden and Beauchamp, History and Theory, 370-371.

140 prolong them in conversation about their illness.204 If patients’ non-health-related interests or concerns are integrated into medical decision-making, it is due to some whim or disposition had by the doctor; it is not secure.205

These three features exemplify the characteristics of a dominating relationship. And while an individual may be more vulnerable and less concerned about making independent decisions when he is ill than when he is healthy, that individual still has a strong interest in not being subjected to domination. Thus individuals’ interest in not being subjected to domination justifies a rejection of the paternalistic model.

I have suggested that we understand the badness of paternalism by thinking about the patient’s relevant interest as freedom from subjection to unaccountable power over decisions about their care. The paternalistic model is bad precisely because it awards doctors the power to interfere arbitrarily with patients. Doctors on the paternalistic model are accountable to no one but themselves in their decision-making about patient care. Furthermore, the paternalistic model builds any inclusion of patients in the medical decision-making process into doctors’ judgments about whether such inclusion is good for patients. Whether a patient has any say over their care decisions is determined by the good will and insight of the doctor. Thus a model of medical decision-making that leaves it up to professional judgment whether patients will have any say over care decisions puts the patient in a highly precarious position—they are beholden to the

204 “A patient should never weary his patients with a tedious detail of events or matters not appertaining to his disease. Even as relates to his actual symptoms, he will convey much more information by giving clear answers to interrogatories, than by the most minute account of his own framing.” Code of Ethics of the American Medical Association (adopted May, 1847), Chapter 1, Article 2, Section 5. 205 In Katz’s story about “Iphigenia Jones”, the doctor only informed Jones about an alternative option for treating breast cancer because he believed it would be a shame for such a young and attractive woman to undergo a mastectomy. Katz, Silent World, 90-91.

141 doctor. This interpretation of the badness of medical paternalism better tracks the precise problems with medical paternalism than a focus on non-interference. Therefore, a normative foundation that substitutes the commitment to respect the patient’s right of self-determination with a commitment to minimize the domination to which a patient is subject can avoid reintroducing the most objectionable elements of the paternalistic model.

III. Non-Domination and Patient Authority

Patients’ interest in not being subjected to domination explains precisely why the paternalistic model is objectionable and why it ought to be abandoned. However, the partnership model must not only account for the rejection of the paternalistic model. As noted above, the arguments concerning protection from harm and patient expertise fail as satisfactory revisions to the normative foundation for the partnership model because they fail to capture the patient’s interest in exerting control within medical decision-making, even when harm is controlled for and even when they lack expertise. The appeal to the patient’s interest in not being dominated will be satisfactory only if it guarantees patient control in medical decision-making.

First one might worry that, by modifying the normative foundation from respect for the patient’s right of self-determination to minimizing domination, we fail to guarantee patient participation in deliberation. If patients’ relevant interest is avoiding interference, then obviously we ought to allow patients to participate in treatment decision-making. But protecting patients from arbitrary interference may turn out to be perfectly compatible with denying patients the authority to participate in deliberation about their care. We would simply need to implement institutional safeguards that ensure doctors are not deliberatively isolated while making decisions about patient care, so that the patients’ interests are represented in some way. But this need not

142 directly involve the patient herself, or anyway need not involve the patient in any robust deliberative process. Insofar as domination is equated with deliberative isolation, it is not obvious that the patient herself must participate in medical decision-making.

Second, one might worry that the approach to non-domination strips patient entitlement to final say over treatment decisions. If doctors are accountable to others in decisions about patient care, but there is no moral weight given to patients’ interest in making decisions about their care, then there is no clear reason why a commitment to minimize domination secures a presumption in favor of deferring to the patient. As long as the doctor’s final decision is open to contestation206—being challenged, being refused, or being overturned—then the presumption in favor of deference to patients with respect to the final decision is unnecessary for minimizing domination. These worries suggest that although non-domination may provide a check against the potential abuses licensed by the paternalistic model, it does not justify patient involvement in decisions about their care.

According to the objection, then, the commitment to minimize domination is consistent with doctors deliberating and even making the final decision with very little patient participation.

In the remainder of this section, I demonstrate that this objection overlooks some key resources at the disposal of the non-domination approach. I argue that a proponent of the non-domination approach can secure the necessity of patient involvement in deliberation about their care, and it can generate a presumption for doctors to defer to their patients on the decision itself.

206 Pettit, Republicanism, 61-64.

143 a. Against the Institutional Model

First, does the commitment to minimize domination fail to secure patient participation in deliberation about medical care? The commitment to minimize domination could fail to do so if

(a) reducing the doctor’s position of deliberative isolation and (b) providing patients with the power to contest medical decisions were sufficient to satisfy the commitment to minimize domination. If this can be achieved without direct inclusion of the patient in deliberation, then the commitment to minimize domination fails as a suitable revision to the normative foundation for the partnership model.

In fact, we can conceive of a model in which patients are excluded from meaningful participation in the decision-making process simply by way of institutional mechanisms that force the doctor to be responsive to both the patient’s interest in what happens to their body, and their interest in how their care plans interact with other goals and projects. Imagine the following arrangement: patients are sent long disclosure forms prior to a visit, which questions them not only about their medical history, but also about their values, concerns, and projects, and about what kinds of bodily mechanisms they feel they must retain in order to be well-functioning. This information is synthesized and analyzed by a computer program which spits out a report the doctor can consult. Thus the doctor is able to make care decisions that are responsive to the patient’s interests without ever engaging them in robust conversation. This proactive institutional measure could be coupled with the ready availability of an efficient ethics and legal committee that reviews and remedies patient complaints. Should doctors’ decisions fail to be responsive to the patient’s avowed interests, patients have a mechanism for holding their doctors accountable for the failed decision. Let us call this the “institutional model” of doctor-patient interaction.

144 The institutional model not only compensates for retroactive abuse, but also helps prevent possible abuse; however, it is a troubling model by the lights of anti-paternalist progress because it protects the patient without including them at all. Of course, one might look at the institutional model and see patients “participating” in decision-making. They provide all of the information they might provide in a normal face-to-face conversation with their doctor; insofar as this is guaranteed to be consulted and taken into consideration, patients are meaningfully involved.

However, many will balk at this kind of model of medical decision-making; patients are

“included” much in the same way that doctors were “included” in decision-making on the informative model. If the non-domination approach sees no morally significant difference between the institutional model and a model in which patients actively participate in deliberation with their doctors, then so much the worse for non-domination.

However, the institutional model does not satisfy the commitment to minimize domination. First, the institutional model pictured above still leaves up to doctors certain judgments that patients are better positioned to make. For example, patients are often well- positioned to determine whether they are going to be willing or able to reconcile certain care plans with familial responsibilities, careers, leisure pursuits or side projects, and major life events. Recall ADENOMA, in which Ellen and Phoebe disagree about whether Phoebe should risk surgical removal of a pituitary adenoma to avoid potential setbacks to her dissertation completion. In ADENOMA, Ellen wants Phoebe to consider trying to find some coping mechanisms to deal with the side effects of the medication. However, Phoebe is better positioned than Ellen to judge whether the coping mechanisms have a chance at being successful, and whether such an adjustment period is time she can risk sacrificing without compromising her

145 prospects of finishing the dissertation. Based on Phoebe’s knowledge about her daily routines, the kind of conditions under which she can do intense, focused work, and the time constraints she faces, her judgment about whether developing coping mechanisms is truly compatible with the completion of her dissertation in several months is crucial information.

On the institutional model, this kind of question would not be easily anticipated; it is quite clear that Ellen could reasonably conclude that her choice to prescribe cabergoline is wholly compatible with Phoebe’s expressed interest in completing her dissertation this summer.

The kind of flexibility and fine-grainedness of the nature of the expertise in question would be incredibly difficult to operationalize, such that doctors could bypass conversation with patients.

One might point out that this is compensated for by the retroactive mechanism, which allows Phoebe to file complaints with Ellen’s choice and subject her decision to an independent third-party review. However, this still renders Phoebe in a position where her judgment about her respective priorities and interests are ultimately left up to someone in a worse epistemic position than Phoebe. Moreover, the retroactive mechanism is an inferior solution because it opens people up to serious harm. If patients are not in position to challenge their doctors’ decisions until after the choice has been made, this exposes patients to the possibility of being subjected to harmful or even irreversible actions that could readily be avoided by patient participation in the initial deliberative process. Consequently, given the nature of medical decisions in particular, retroactive mechanisms for protecting patients from arbitrary intervention are not individually sufficient.

I am not claiming that this distinctive epistemic position alone secures standing to participate in the decision-making process. Rather, the patient’s participation is important in

146 achieving a non-dominating decision-making process because the patient’s active participation is required to ensure that their interests are well represented in deliberation about their care. Given that neither the doctor nor the health care institution are well-positioned to know either (1) patient-specific facts that are relevant to health, or (2) facts about how the patient’s broader goals and interests interact with the patient’s health-related interests, an arrangement in which the institutional safeguards exclude patient participation will likely result in a situation where the guarantee that patient interests are accurately represented is less secure than if patients directly participated themselves. Thus there is instrumental reason to suppose that robust patient participation will be a necessary part of minimizing domination.

One might worry, however, that this is precisely the kind of precarious justification that rendered the expertise-driven argument inadequate. It is entirely possible to imagine that we can craft an excellent disclosure form or make use of some form of adaptive questionnaire to address fine-grained questions. Moreover, it is simply not the case that we are always best positioned to know these facts about ourselves. If accurate representation of our interests is important, then there may be cases in which spouses or close family members may be better positioned than the patient to provide this representation. We might devise another institutional mechanism to identify who is best positioned to represent the patient’s interests, and ensure that this identified person participates in deliberation. But there is no guarantee that it will be the patient. So the epistemic argument, while instrumentally useful, may not provide a secure enough protection against the institutional model

However, even this highly sophisticated institutional model fails to satisfy the commitment to minimize domination. Recall that one of the bad-making features of domination

147 is its impact on intersubjective perception. Enjoying non-domination that (a) others recognize you as undominated; and (b) that you recognize that others recognize this of you. The less this intersubjective recognition obtains, the less one enjoys non-domination.207

The institutional model forces the health care provision team to be responsive to the interests of the patient by collecting a wider swath of information than the paternalistic model generally considers for, and by implementing third-party accountability mechanisms. On the institutional model, conversation or robust patient participation is unnecessary because the health care providers have acquired all the information required to make a decision that is responsive to the patient’s interests. Therefore, the institutional model reduces the patient to a complex bundle of interests, information about which health care providers must take into account when attempting to decide how to proceed with treatment.

If interpersonal communication merely amounted to information transfer, then the institutional model’s perception of the patient as a complex bundle of interests could arguably guarantee that the patient enjoyed undominated status among the health care providers. However, interpersonal communication is fundamentally a shared activity between agents.

“Communicative actions play a wide range of roles in adjusting, maintaining, indicating, correcting, and revising the practical and cognitive commitments of participants in communicative exchanges.”208 To engage in interpersonal communication at all, one must see oneself as being responsive to an agent and their communicative activity. Otherwise, one is simply unilaterally incorporating information into one’s own decision-making process.

207 As Pettit notes, however, “the eyeball test does not require that people should be able to look one another in the eye, regardless of their personal lack of nerve.” Pettit, On the People’s Terms, 84.

208 Manson and O’Neill, Rethinking Informed Consent, 65.

148 By excluding the patient from active participation in the deliberative process leading up to the decision, the institutional model treats the patient as relevant to medical decision-making only with respect to the information she can provide. The institutional model does not recognize patients as indispensable to medical decision-making qua communicative agents; they are indispensable only insofar as they provide information doctors otherwise could not access for good medical decision-making.

But being seen as an indispensable participant in medical decision-making is key to patients enjoying undominated status within medical decision-making, because being seen as an indispensable participant is crucial to guaranteeing proper consideration of one’s interests. One of the key problems with the paternalistic model was its encouragement of the doctor to see the patient as a body to be healed; in virtue of seeing the patient simply as a body to be healed, the pressure to give due consideration to patients’ non-health-related interests and projects was non- existent. The institutional model incorporates information about the patient’s broader non-health- related interests into medical decision-making. But it still divorces these interests from the person.

In separating out the patient’s interests from the patient in medical decision-making, the institutional model fails to capture the intimacy of medical decisions. Medical decisions directly affect our bodies and our lives; they have the potential to be a minor inconvenience, but they also have the potential to affect the trajectory of our lives.209 In other words, medical decisions do not simply affect the bundle of our health-related and non-health-related interests—they affect us as

209 Jessica Flanigan emphasizes the importance of intimacy of medical decisions in her defense of the right to self- medication. I strongly agree with the importance of recognizing the intimacy of medical decisions, but not with the conclusion that prescription requirements should be abolished. Flanigan, Pharmaceutical Freedom, 14-17.

149 whole persons. Guaranteeing proper consideration of a patient’s interests in medical decision- making, then, requires ensuring that the intimacy of these decisions is not lost in deliberation.

But by excluding the patient herself from participating in deliberation, this weakens the guarantee for the patient that the recognition that these decisions affect her will inform consideration of how best to proceed in treating the patient. By being an active participant in deliberation about how to proceed, engaged as a communicative agent, there is a much stronger guarantee that the patient’s interests will receive proper consideration in deliberation.

Patients who are treated as negligible qua communicative agents with respect to decisions about their care will likely be viewed merely as passive beings who are to be benefitted by the good will of the doctor, not agents who command a certain kind of standing with their doctors.

This affects the patient’s standing as a social equal. Moreover, it is likely that even if the health care providers are capable of seeing patients as undominated, patients themselves will not feel as though they enjoy this undominated status with their doctors; they will feel like they are not being taken into consideration, but rather merely some body of information about them. Given the intimacy of health care decisions and the tight connection they have to our bodies and our lives, it is uniquely important that the person participate in deliberation. The institutional model casts patients in the role of information provider, and it gives them a kind of backward-looking power. However, it does not leave room for the patient to relate to their doctor as a social equal.

Only by directly including patients in deliberation can both doctors and patients reliably recognize that patients enjoy undominated status in relation to their doctor. Thus achieving the intersubjective perception of patients as undominated by their doctors requires patient

150 participation in medical decision-making; purely institutional mechanisms that force doctors to be responsive to patient interests do not do enough to minimize domination. b. In Favor of Deference to Patients

In the previous section, I argued that the patient’s interest in not being dominated is sufficient to secure an entitlement to participate in deliberation. Patients have a strong interest in treatment decisions because of the effects of medical care on and the possible implications for one’s body and one’s ability to pursue chosen goals and plans. Given the complexity of

“expertise” with respect to the patient’s interests and how interests might interact with various treatments, patient participation is the most secure way for patients to be assured that patients’ interests are accurately represented in deliberation. Moreover, patient participation is important for ensuring that patients are recognized as agents within the context of treatment decision- making. Given the intimacy of medical decisions for one’s person and one’s life, a model that excludes them from participation in deliberation fares worse in guaranteeing that patients will be recognized as agents on the same terms as the doctor. Thus patient participation is important for assuring the patient that their interests are being given proper consideration; this helps secure not only the non-arbitrariness of the doctor’s capacity to interfere, but also helps the patient be perceived as an undominated person. The institutional model, therefore, comes up short in promoting the patient’s interest in not being dominated.

Yet the exclusion of the patient’s right of self-determination from the normative foundation introduces another concern regarding patient involvement in medical decision- making. One of the distinguishing features between non-interference and non-domination is that non-domination does not view interference as objectionable in and of itself; rather, non-

151 domination views the capacity for arbitrary interference as objectionable. Non-interference creates a presumption in favor of deferring to patient decisions; any actual interference with the patient’s decision-making requires justification. By contrast, non-domination is concerned with relationships that are structured so that one party is empowered to interfere or intervene with another person without accountability.

Given the substitution of non-domination for non-interference, one might worry that the non-domination approach as I have construed it does not secure any pressure to defer to patient decisions.210 Insofar as patients are recognized as active participants in decision-making, they enjoy undominated status with their doctors. Yet it is unclear how avoiding deliberative isolation generates a presumption in favor of deferring to the patient’s decision in cases of intractable faultless disagreement. As long as the doctor’s decision is subject to being challenged or overruled by third-party mechanisms, non-domination offers no reason to suppose that there should be a presumption in favor of deferring to the patient.

One might suggest that the mere fact that the patient is subject to the doctor’s will creates a dominating relationship. But by entering the doctor-patient relationship, the patient commits to the project of addressing their health concerns. As long as they remain a part of that project, there is nothing obviously wrong with the doctor having the power to ensure that the final decision does its best with respect to the stated aims of the project: finding a decision that is likely to promote or restore the patient’s health while attempting to minimize the impact on the patient’s goals and projects. If the doctor cannot exercise this power in deliberative isolation—

210 Nir Eyal, “Informed Consent”, Stanford Encyclopedia of Philosophy, ed. Edward N. Zalta, (Fall 2012). https://plato.stanford.edu/entries/informed-consent. Accessed 12 June 2018.

152 specifically, if the patient still has an active role to play in deliberation—then it is not clear that the doctor’s power to make the final decision is dominating.

Furthermore, one might argue, the patient has the ability to exit the relationship. Should the doctor land on a decision that the patient finds unfavorable, the patient has the ability to seek out a new doctor who may be willing to defer to the patient’s request, or whose views are better aligned with the patient’s than their initial doctor’s. Consequently, while the patient is dependent on the doctor for access to her desired treatment, we can stipulate, for the sake of bolstering skepticism that non-domination grounds a presumption to defer, that the cost of exit for the patient is often low; she can always find a new doctor.211

Given these considerations, it might seem like the doctor’s refusal to defer to a patient’s decision is consistent with non-domination. The doctor holds the patient to a commitment to the project she agreed to participate in; and the patient is capable of exiting the relationship if she decides that it is more important to her to secure the treatment she desires than to continue working with this particular doctor. Neither party is in position to wield power over the other from a position of deliberative isolation.

Is there a way for the proponent of non-domination to secure a presumption in favor of deference to patient decisions? Perhaps we need to look at a broader picture. Despite non- domination’s morally neutral stance towards interference in and of itself, there could be structural reasons to suppose that in cases of disagreement over the treatment decision, doctors

211 There are many cases in which the cost of exit is high for patients. However, that just makes the case that doctors ought to defer to patient decisions in cases of intractable disagreement all the stronger. Thus I stipulate a low cost of exit in the sense described above simply to show that, even in the cases where patients have alternative options for their doctors, non-domination still can generate a presumption to defer to patients in these cases. Thanks to Dana Howard for pushing me to clarify this.

153 ought to defer to their patient’s decision. The argument must be, then, that given external conditions of the doctor-patient relationship, the capacity to refuse to defer to a patient’s decision is dominating.

First, are there any reasons to suppose, outside of the robust libertarian interest in self- determination, that it is a good thing for doctors to defer to patient decisions about their care?

Certainly. As noted above, between the doctor and the patient, the patient has the much stronger interest in the resulting decision. Patients have to live with the daily effects and outcomes of the decision; almost all side effects or costs are theirs and theirs alone to bear. Therefore, should a patient judge that she is more willing to experience certain costs or negative effects associated with one treatment over the costs or negative effects of another, it makes sense to defer to her since she is the one directly affected.

Given this consideration, then, it is striking that doctors have the power at all to refuse to provide certain treatments to patients. Because doctors provide not only expertise, but also access to certain resources or services, doctors possess gatekeeping power over patients. Such gatekeeping power is easily justifiable, but it does deprive patients of direct access to resources that they desire or require for caring for their health. However, such gatekeeping power may also be easily constrained by external mechanisms. Of course this gatekeeping power could be abused; any power imbalance is capable of being abused. But does the presence or absence of an expectation to defer to patients’ decisions affect the arbitrariness of the power? More precisely, does the absence of an expectation to defer to patients increase the doctor’s capacity to wield gatekeeping power from a position of deliberative isolation?

154 I see two ways in which removing the expectation to defer to patient decisions can increase domination. First, we can accept that doctors should have gatekeeping power even for non-paternalistic reasons. However, this gatekeeping power, if unchecked specifically by a pressure to defer to patients in the case of intractable faultless disagreement, could easily lead to a failure of proper consideration of the patient’s interests.

To see this, consider ADENOMA. Ellen disagrees with Phoebe’s choice to forego medication and instead undergo a surgical removal of the tumor. Suppose that Ellen is under no institutional or professional pressure to defer to Phoebe’s decision; she is free to refuse to act on

Phoebe’s choice, and Phoebe’s recourse is by way of retroactive, third-party review of the decision.212 If there is no pressure to defer to Phoebe’s decision, then Ellen’s pressure to view

Phoebe as an equal deliberative partner is very low. Given the institutional mechanisms in place, the incentive structure is designed for Ellen to ensure that she is accountable to the independent committee. While she might attempt to justify her choice directly to Phoebe, she is truly answerable to the review board. Thus from Ellen’s perspective, her primary deliberative partner is the independent committee.

Why does this matter? It matters because Phoebe lacks a secure guarantee that Ellen’s deliberation in this case tracks Phoebe’s avowed interests; rather, it seems open to Ellen to guide her deliberation more by her anticipation of the independent committee’s interpretation of

Phoebe’s interests. If Ellen and Phoebe resolve intractable conflict not by deferring to Phoebe, but by being answerable to an independent review board, then it is the review board’s assessment

212 We can imagine that the institution, in wanting to ensure autonomy of professional judgment, reassures doctors regularly that they will not be penalized if they refuse to defer to patient decisions in cases of intractable faultless disagreement. Therefore, the institution does not directly exert any pressure on Ellen to defer.

155 of Phoebe’s interests that is ultimately relevant to Ellen’s deliberation and decision-making, not

Phoebe’s assessment. And even if the review board is a reliable proxy for Phoebe’s interests, there is still less guarantee that the intimacy of the decision for Phoebe will figure appropriately into Ellen’s deliberation.

As we have seen, the account of non-domination as interfering power constrained by deliberative accountability does not require that the powerful be directly accountable to the powerless.213 On the other hand, as I noted in the previous section, making the powerful directly accountable to the powerless improves the situation of the powerless relative to the powerful. It fosters a sense of dignity and respect between the parties that would be absent were the accountability mechanisms located exclusively outside of the interpersonal relationship. As

Elizabeth Anderson states in her discussion of the need for workplace democracy, “there is no adequate substitute for recognizing workers’ voice in their government.”214 Similarly, there is no adequate substitute for recognizing patients’ voice in decisions about their care.

The presumption in favor of deferring to patient decisions also affects the objective power structure. We have assumed that doctors are to retain gatekeeping power. As McCammon points out, not all powers to interfere are equal in severity. There are certain kinds of dependencies in social relationships that, while unquestionably an imbalance of power, do not strike us as particularly objectionable.215 For example, we could imagine a romantic relationship

213 McCammon, “Domination: A Rethinking”, 1048. 214 Anderson, Private Government, 69. 215 McCammon uses the differentiation between objectionable and unobjectionable power imbalances to challenge Lovett and Pettit, on the grounds that their views generate cases of “cheap” domination, or instances of dependencies in social relationships that count as domination on the view put forward but are not morally objectionable. This constitutes a challenge to these views insofar as it is a desideratum for an account of domination that it captures what is bad about domination. Thus McCammon seems to want ‘domination’ to be a normatively loaded concept; we should only call objectionable relationships instances of domination. I’m sympathetic to this, but

156 in which one partner is somewhat more devoted than the other partner. This places the less devoted in a position where they could extract non-reciprocal favors or benefits from the more devoted. However, this is not a terribly troubling power imbalance; while we might caution the less devoted not to allow herself to be taken advantage of, we need not think that their relationship should be modified or abolished. We can contrast that kind of interpersonal power imbalance with the power imbalance between a husband and wife in a legal system where wives are viewed as property. The latter is a clear case of domination. ‘Domination’ is paradigmatically concerned with those power-imbalanced relationships that strike us as unacceptable. Thus it is not enough to point to an imbalance of power to demonstrate that domination is present; we must specify what is objectionable about the power held by one party.

According to McCammon, A’s power over B is objectionable if A has the power to make a refusal to cooperate more costly for B than cooperation, across a sufficiently wide range of cases of possible cooperation with respect to a particular decision.216 For example, imagine A is a professor and B a student in the class. If B’s scholarship hangs on A’s positive evaluation of

B’s performance in class, and A’s evaluation is purely subjective (i.e. A’s evaluation will not be subject to any further institutional checks and B has no recourse), then if A wants B to run errands for A, A is in position to attach a very high cost to B’s refusal to cooperate. The more A can attach cost to non-cooperation with a decision such that it is rational for B to cooperate in many different scenarios where A demands more and more of B, the more objectionable A’s power over B is. A’s power to attach cost to non-cooperation is determined not simply by the

it is enough for my purposes to adopt the weaker claim: there are cases of domination we should be troubled by, and there may be cases of domination we are untroubled by. The question is whether the doctor’s gatekeeping power creates a power imbalance we should be troubled by. 216 McCammon, “Domination: A Rethinking”, 1038-1041.

157 degree of unilateral control A has to make decisions about a course of action, but also about the importance of the decision to B.

It is clear that doctors’ gatekeeping power enables them to attach high costs to non- cooperation. To see this, consider ADENOMA. Ellen alone possesses the power to authorize surgical removal of Phoebe’s tumor; if Ellen refuses, Phoebe either will have to proceed with medication (cooperate), or she will be forced to abandon her relationship with Ellen (non- cooperation). Abandoning her relationship with Ellen leaves Phoebe with two choices: either she can search for a new doctor who will be willing to authorize the surgical removal, or she can just forego any treatment.

These latter two options are seriously costly. Seeking out new doctors is often a time- and labor-intensive process; furthermore, seeking out a doctor who is willing to authorize surgical intervention requires even greater research and likely multiple appointments. Foregoing treatment forces Phoebe to simply deal with the impacts of a tumor on her pituitary gland; such impacts can include reproductive and sexual dysfunction, physical symptoms like headaches or fatigue, and mental health issues.217 These are not only detrimental to Phoebe’s health; they are also detrimental to her ability to pursue the project that motivated her to seek out the surgical removal in the first place: completing the dissertation. Thus Ellen’s power to refuse Phoebe access to her requested treatment attaches high costs of non-cooperation.

Given the importance of health to one’s well-being, and the prospective difficulties of finding a new doctor who will acquiesce to a patient’s decision (especially in cases like

ADENOMA, where the decision is controversial), doctors’ gatekeeping power enables doctors to

217Ian E. McCutcheon, “Pituitary Tumors in Women”, Pituitary Network Association , https://pituitary.org/medical- resources/pavilions/women-s-health/women-s-health-archive/pituitary-tumors-in-women. Accessed 10 June 2018.

158 attach costs to non-cooperation that could make patient cooperation rational in a wide range of cases. Even if doctors are prevented from physically coercing, manipulating, or deceiving patients into cooperation, the gatekeeping power itself is a source of objectionable power to interfere.

One might point out that while the doctor’s gatekeeping power is a compelling example of a possible objectionable power to interfere if left unchecked, this does not imply that it must be checked by a presumption in favor of deferring to patient decisions. Domination consists not simply of the power to interfere, but the power to interfere from a position of deliberative isolation. As long as there is a mechanism in place that opens the doctor’s decision to being challenged by an outside party, then the doctor’s gatekeeping power is not a power capable of being exercised in deliberative isolation. Therefore, while the value of minimizing domination requires placing some kind of check on the doctor’s ability to attach high costs to non- cooperation, the power structure can be checked by way of independent institutional mechanisms--not a presumption in favor of deferring to patient decisions.

As argued previously, there are considerations of intersubjective perception to support a presumption in favor of deferral. However, it is also worth noting that an independent institutional mechanism might itself be perceived as a cost of non-cooperation for the patient.

When unaddressed, medical conditions often cause discomfort and compromise one’s ability to function in daily life. If one knows that refusing to cooperate with the doctor’s chosen plan requires an independent institutional review to challenge it, then an additional cost of non- cooperation is delayed access to treatment for a condition one (presumably) hopes to resolve.

Given this cost, it would be rational for a patient to cooperate with a doctor’s decision simply to

159 avoid the institutional review process required to override the doctor’s decision. Even if institutional checks on the doctor’s gatekeeping power are implemented, their mitigation of the high costs of non-cooperation reintroduce other costs of non-cooperation. These costs could be avoided by establishing a presumption to defer to the patient’s decision in cases of disagreement.

Thus an interest in minimizing domination justifies a presumption in favor of deferring to patient decisions about their care, in cases where doctors and patients intractably and faultlessly disagree.

What have the above arguments shown about the prospects for the partnership model?

Since the partnership model must abandon the commitment to respect the patient’s right of self- determination, it is unclear (a) what grounds the patient’s share of decisional authority, and (b) whether their share of decisional authority can be sufficiently robust to accommodate key anti- paternalist insights. I have argued that an appeal to the value of minimizing domination can serve as a viable alternative to respect for the patient’s right of self-determination. Domination captures what is so objectionable about the paternalistic model. Moreover, an appeal to an interest in minimizing domination can preserve the central anti-paternalist developments in our thinking about proper doctor-patient interaction. Through an appeal to the patient’s interest in not being dominated, we can secure both patient authority to participate in medical decision-making and secure a presumption in favor of deferring to patient decisions in cases of intractable faultless disagreement. Therefore, the partnership model has the resources to meet the challenge that it sacrifices important anti-paternalist insights about the patient’s role.

160 IV. The (Ir)Relevance of Non-Interference

I have argued that the value of minimizing domination can successfully secure patient participation in medical decision-making, and it can ground a presumption to defer to patient decisions in cases of intractable faultless disagreement. If replacing respect for the patient’s right of self-determination with minimizing domination can secure these outcomes, then this addresses the worry that the partnership model abandons important anti-paternalist insights.

Furthermore, the value of minimizing domination accommodates the doctor’s authority to try and convince the patient to make different choices. As noted, the non-domination approach does not view interference itself as objectionable; rather it objects to the capacity to interfere from a position of deliberative isolation. When doctors attempt to persuade patients to try and make different choices, they do interfere with a process of independent decision-making a patient may have engaged in. However, the presentation of reasons does not occur in deliberative isolation. Since patients have the authority to participate in deliberation as well, patients have the authority to challenge not just the reasons themselves, but whether the doctor’s presentation of further reasons in a given case is necessary. Moreover, the expectation that doctors will defer to patient decisions places pressure on doctors to be able to defend their intervention to the patient.

If the doctor cannot defend his decision to push back on the patient's decision, then the doctor will face difficulty in pushing the decision closer to his preferred course of action. While I will argue in the next chapter that expressing disagreement is sufficient to reopen deliberation, it does not follow that the parties cannot resettle the question in the exact same way as before.

However, one might worry that the partnership model still fails to do full justice to important anti-paternalist insights. The partnership model will still expose patients to unwanted

161 deliberation about their medical care; it will empower doctors to prolong deliberation past the point the patient desires to deliberate, even in cases where the patient’s decision is informed and does not threaten significant self-harm.

Given that non-domination is compatible with doctors possessing the authority to try and persuade the patient to revise decisions, one might argue that the partnership model cannot preserve a morally significant element of the patient’s interest in participating in medical decision-making—the value of self-determination.218 It is important for agents to make decisions and act on their own, especially where those decisions impact one’s life more broadly.219 On this view, treatment decisions are decisions that are often of great significance to patients’ lives.

Therefore, patients have a morally significant interest in being able to make these decisions with minimal intervention from doctors; insofar as the partnership model disallows this, it misses out on a key anti-paternalist insight.

I do not find such a view compelling with respect to medical decision-making. There are two ways in which the patient’s interest in engaging in treatment decision-making might connect up to a broader interest in self-determination. First, patients might have an autonomy-based interest in treatment decision-making because treatment decisions are part of one’s plans about one’s life. Consider, for example, a prospective graduate student’s choice of which institution to attend. Selecting a graduate school is constitutive of a future student’s life-shaping activity because it sets the student on a trajectory for one’s career—it settles how the student will be

218 This echoes not Mill’s point about expertise, but Mill’s point about the importance of individual construction of a life: “If a person possesses any tolerable amount of common sense and experience, his own mode of laying out his existence is the best, not because it is the best in itself, but because it is his own mode”. Mill, On Liberty, 64. 219 This is the central insight in Tsai’s argument that certain cases of rational persuasion can be paternalistic; in cases where the decision is central to our lives, it can be important that we be left to make certain decisions without someone trying to convince us or interfere in our decision-making. Tsai, “Rational Persuasion as Paternalism”, 92- 93.

162 trained as a scholar. Possessing unilateral authority to make this decision arguably is of value because this decision is a key commitment for building one’s life in a particular direction.

Treatment decisions may be like this; they are key building blocks for a central component of one’s life.

Second, patients might have an autonomy-based interest in treatment decisions because treatment decisions are concerned with an indispensable tool for executing life plans—namely, one’s body. Perhaps unilateral practical authority over medical decisions is important for reasons of self-determination due to the special role the body plays in one’s life plans; the body is irreplaceable and inescapable.220 As Gerald Dworkin notes, “If my architect doesn’t listen to me and this results in a house I do not like, I can always move. I cannot move from my body.”221 If one’s body is significantly damaged, the ability to recover from and overcome the effects of such damage is limited. Given that treatment decisions are decisions about what will happen to one’s body, treatment decisions directly concern something that is an indispensable tool for realizing one’s goals and plans. Therefore, patients have an autonomy-based interest in treatment decisions due to the instrumental importance of the body in realizing one’s life plans.

On the second account, treatment decisions are connected to self-determination only indirectly. Even in cases where the body plays an important instrumental role in the execution of one’s life plans, the connection to self-determination is indirect. Consider a rock climber, who has shaped his life around a physical activity that requires specific use of particular parts of his body. Even though the condition of his body and his arms is central to his ability to execute aspects of his plans and goals, and even though the decisions he reaches ultimately promote or

220 Dworkin, “Autonomy and Informed Consent”, 112-113. 221 Dworkin, “Autonomy and Informed Consent”, 113.

163 frustrate his goals in climbing, the presence or absence of interference with the climber’s decision-making itself has no significant bearing on self-determination.

The practical authority the climber requires to protect this interest in self-determination is the authority to refuse certain treatments, and the authority to introduce considerations about the desired condition for his body into the deliberative process. It does not require awarding the patient control over the shape of the deliberative process itself, or the unilateral authority to determine when deliberation has ceased. Thus the second account of the connection between treatment decisions and self-determination is too minimal to plausibly ground unilateral practical authority for the patient.

One who is skeptical that the partnership model can fully capture the valuable anti- paternalist insights about the patient’s role in medical decision-making must argue, therefore, that the partnership model fails to recognize that the making of treatment decisions on one’s own terms is itself valuable. They are decisions that are constituents of life plans; it is important that we not be alienated from these decisions.222 Where we can be left to make these decisions alone, we ought to be. Insofar as the partnership model fails to protect this interest, the partnership model gives up something of moral significance for the sake of shared decisional authority.

There are some key decisions in health care that do frequently bind up with self- determination. Control over one’s death, for example, seems like a clear case in which considerations of non-alienation bear directly on the decision itself. As life-sustaining technology has improved, many have come to see questions of how one dies as questions about how one

222 I borrow David Enoch’s language here of non-alienation to pick out a distinctive autonomy-oriented concern, one different from sovereignty. David Enoch, “Hypothetical Consent and the Value(s) of Autonomy”, Ethics 128, no. 1 (October 2017): 6-36.

164 chooses to conclude one’s life. Death, therefore, is intimately bound up with self-determination.

Childbirth is another area in which considerations of non-alienation may become relevant. Given that pregnancy and childbirth are the beginning of a new identity in a person’s life (namely the

“parental” identity), patients may attribute great importance to having control over decisions about pregnancy and labor.223 In cases such as these, the value of making decisions with minimal interference from doctors is plausibly present.

However, these kinds of decisions are not the norm. Generally, treatment decisions are not expressions of one’s larger life plans. Rather, treatment decisions are attempts to address impediments to one’s ability to make decisions and act in the ways necessary to realize one’s larger life plans. Consider ADENOMA. Phoebe’s treatment request for surgical removal of the tumor is justified by considerations about her broader life plans. Her ability to pursue a project central to her life is compromised by the doctor’s proposed treatment, and a successful outcome of surgery would allow her to pursue this project unimpeded by the tumor and the medication.

Yet Phoebe’s decision about surgical intervention is not itself valuable for reasons of self- determination. There is no reason to suppose that Phoebe’s decision to have surgical intervention is an important constituent of her broader life-shaping activity. Rather, it is valuable because her decision is instrumental to her ability to pursue those projects that are constituents of her life-

223 I am not confident that the interest tracked in worries about control over labor is always an interest in self- determination, although self-determination often plays a role. When women report the anger they feel at their experience of labor, they often discuss the way in which they are treated as irrelevant to the birthing process; the way in which their wishes and concerns are disregarded for the sake of the health of the infant. This may be understood not as the importance to retain control over the process as a way of realizing their goals concerning labor, but rather the desire not to be cut out of decision-making. Doctors do not convince women to make different decisions regarding their labor in situations where there are complications; they simply force them to undergo certain procedures (early inducement, C-sections). Thus OBGYNs are free to ignore women’s desires and interests when they unilaterally deem it necessary; this freedom is evidence of a relationship of domination between the doctor and patient in cases of labor. Therefore, it is not clear to me that the interest in patient control over labor is always an interest in respect for the patient’s right of self-determination.

165 shaping activity. Illness is a disruption of one’s plans; choices about how to restore such plans are rarely important as expressions of one’s life-shaping activity. They are important because they are attempts to correct or adjust to the disruption to one’s life-shaping activity.

The instrumental importance of treatment choices to one’s ability to act as a self- determining agent is weighty; a model of the doctor-patient relationship that allows doctors to disregard the patient’s interest in participating in treatment decisions is unacceptable because it fails to recognize even the instrumental value such decisions have. If the partnership model could not secure patient participation and even deferral to patients, then this would be a serious problem for the partnership model. However, insofar as making one’s own treatment choices is rarely itself a constituent of a life-shaping project, it is not clear how the partnership model’s failure to protect independent treatment decision-making is a failure to capture something of moral significance.

One might object that even when decisions only have instrumental value with respect to self-determination, this is sufficient to justify unilateral practical authority. Even though

Phoebe’s decision for surgical removal of the adenoma is valuable only because its removal will better enable her to complete her dissertation, her endocrinologist Ellen has no grounds to push back against her decision; after all, Phoebe is the one affected by the treatment choice. Thus the partnership model’s compromise to patient decisional authority is still objectionable. But this presumes that Ellen has no direct interest in the treatment decision; while nowhere near as weighty, I have argued in the previous chapter that doctors do have a direct interest in treatment decisions. Specifically, doctors have an interest in trying to make decisions that are likely to achieve good health outcomes for their patients. This is part of the doctor’s role as a patient

166 health advocate. Moreover, as noted above, the partnership model has the resources to justify a presumption in favor of ultimately deferring to Phoebe, given their faultless disagreement.

Ellen’s power to pursue her interest in promoting good health outcomes is quite restricted on the partnership model. Therefore, it is not clear why the instrumental value of Phoebe’s decision to her broader life plans would justify awarding total decisional authority to Phoebe.

The partnership model cannot treat as morally significant a patient’s interest in making independent treatment decisions, or decisions without intervention from their doctors. Such an interest would plausibly be grounded in the value of being left to make important life decisions for oneself without unwanted intervention. While this consideration might figure into a recommendation that a doctor defer to a patient earlier than they might otherwise be inclined to, this consideration cannot be treated as morally significant enough to affect the distribution of authority between the doctor and patient.

However, in this section I have tried to motivate the thought that giving up this development is not all that costly. Given that treatment decisions tend not to be important life decisions themselves, but rather tend to be decisions that help remove impediments to or facilitate life-shaping activity, the interest in making these decisions without unwanted interference is not particularly significant. All that is really needed is that the patient has some decisional authority—and this the partnership model can accommodate.

V. Sharing Decisional Authority

The aim of this chapter has been to address a serious challenge to the partnership model. I argued that the partnership model is valuable because it allocates doctors partial decisional authority; this decisional authority is necessary for doctors to be able to function as advocates for

167 patient health. However, the partnership model is incompatible with the commitment to respect the patient’s right of self-determination. Given the central role this commitment has played in both abandoning the paternalistic model and securing for the patient a robust degree of control over medical decision-making, its abandonment left the partnership model with a major explanatory burden.

I have argued that this explanatory burden can be met by an appeal to the value of minimizing domination. Patient participation in medical decision-making and deferral to patient decisions in cases of disagreement are necessary checks on the doctor’s gatekeeping power, and for establishing the patient as a social equal to the doctor. While the partnership model cannot capture all anti-paternalist insights—specifically those oriented around the value of independent, unimpeded decision-making—the partnership model can secure for the patient a share of decisional authority that captures the most important anti-paternalist developments. Thus the partnership model now has the normative foundation required to accomplish its stated goals: to ensure that both doctor and patient play indispensable roles in the project of medical decision- making.

This leaves a final central question: how does the partnership model, properly understood to require shared decision-making, work? Specifically, then, what is it for two parties to share authority over a decision? Both the paternalistic model and the contractor model assume that one party has decisional authority that may then be constrained by competing considerations. The partnership model rejects this framing. In the final chapter, I will draw on resources from the shared agency literature to provide an account of how the doctor and patient might share authority over a treatment decision. In contrast to the typical construal of decisional authority as

168 the right to make a decision, I discuss decisional authority as the standing to make a decision.

How these two differ will be explored in the upcoming chapter.

169

Chapter 5: “Up to Us”: Sharing Authority

The anti-paternalism of 20th century medical ethics provides a poor normative foundation for the partnership model of the doctor-patient relationship. Because the right of self- determination entails the patient’s rightful possession of authority over medical decisions, the doctor may not always be justified in participating fully in medical decisions. Moreover, the more a doctor’s participation is aimed at pushing towards a decision that is more satisfactory to both parties, the harder it is to justify the doctor’s pushback against a patient’s decision. This conflicts with the vision of the partnership model, where both doctor and patient participate in medical decision-making, working together to reach a decision that satisfies both of them. In other words, the partnership model treats medical decisions as up to both the doctor and patient.

This clearly conflicts with a normative foundation that builds in allocation of decisional authority to one party.

In the previous two chapters, I have offered a different account of the normative foundation for the partnership model. Doctors are entitled to some share of decisional authority because it is necessary for their ability to function as a patient health advocate, a role which is a central—and often underappreciated—part of protecting patient well-being. However, doctors are limited in their ability to advocate for patient health by the patient’s interest in not being dominated. The interest in not being dominated is sufficient to justify patients’ entitlement to participate in medical decision-making, and to justify the legitimacy of an expectation that the doctor defers to the patient in cases of intractable faultless disagreement. However, minimizing

170 domination is compatible with doctors possessing the authority to push for decisions that are more satisfactory by their lights as a patient health advocate. By drawing out a key feature of the commitment to promote patient well-being, and by replacing the commitment to respect the patient’s right of self-determination with the commitment to minimize domination, the demands and permissions of the partnership model are justified.

But how can decisional authority be shared between doctors and patients? It is common to represent the partnership model as resting at the midpoint of a continuum between the paternalistic model and the contractor model. However, we should not assume that the partnership model is simply a compromise between the paternalistic model and the contractor model. More precisely, we should not assume that a “compromise” approach secures for both parties the authority to push for further deliberation in the face of disagreement over how to proceed. It is the aim of this chapter to determine how we must conceive of decisional authority in order to secure the vision of the partnership model

In what follows, I will argue that there must be a change in our understanding of decisional authority in order to achieve the kind of interactions envisioned by the partnership model. After quickly reminding us of what ‘authority’ amounts to, I will specify two desiderata for an account of shared decisional authority. These desiderata are informed both by the ideals of partnership, and by the commitment to minimize domination. I then consider whether the

“compromise” approach to sharing decisional authority can secure the vision of the partnership model. By spelling out the shared forms of two accounts of decisional authority commonly found in discussions of the paternalistic and contractor models, I illustrate how the “compromise” approach to shared decisional authority fails to capture the envisioned interactions of the

171 partnership model. Crucially, both accounts are limited with respect to reopening deliberation in the face of exercises of decisional authority. This indicates that securing the interactions envisioned by the partnership model requires not just authority to close deliberation, but authority to reopen deliberation.

I then present an alternative conception of decisional authority, inspired by the body of literature on shared agency. I present Abraham Roth’s account of practical intersubjectivity as a form of shared deliberative standing in a decision-making process. Through enjoying shared deliberative standing, both doctor and patient have the standing to close practical deliberation for the other party, but more importantly, both parties have the standing to reopen each other’s practical deliberation. Shared deliberative standing provides the account of authority required to realize the vision of the partnership model.

I. Desiderata for Shared Authority

In this section, I will set out two desiderata for an account of shared decisional authority.

Before establishing the desiderata for an account of shared decisional authority, we should remind ourselves what ‘decisional authority’ refers to. I have identified decisional authority with

Groll’s account of treating one’s will as structurally decisive with respect to a practical question.224 Treating agent A’s s commitment to 훗 as structurally decisive implies that A’s commitment replaces the reasons for 훗-ing. If one is subject to A’s authority, then A’s commitment to 훗 supplants any independent judgment the subject might have reached about whether or not to 훗. The resulting account of shared decisional authority should not stray from

224 Groll, “Paternalism, Respect, and the Will”, 699-702.

172 this conception of authority. But there are further conditions our account of shared decisional authority should satisfy.

First the ideal interaction on the partnership model is an open dialogue between doctor and patient that ultimately results in a decision that is satisfactory to both doctor and patient.

Both the paternalistic model and the contractor model envision medical decisions as under the authority of only one of the parties in the doctor-patient relationship; when the authoritative party reaches a decision, this settles the question for the party subject to authority. On these models, the “subject’s” entitlement to participate in medical decision-making is precarious; it depends on either a justified challenge to the legitimacy of the authority’s dictates, or on the authority’s dictates directly including the subject in the decision-making process. The partnership model differs in its commitment to mutual participation and mutual satisfaction.

The commitment of the partnership model to open dialogue in the face of disagreement provides the first desideratum for our account of decisional authority. The account of decisional authority underlying the partnership model should ensure that, when decisional authority is shared, neither party is empowered to unilaterally terminate deliberation. ‘The power to unilaterally terminate deliberation’ might invite a weaker and a stronger reading. On the weaker reading, removing the power to unilaterally terminate deliberation might prevent the partners from committing to one party’s decision without offering the other party the opportunity to express dissent. The weaker reading is compatible with granting one party the authority to have final say over a decision; however, mutual participation is protected by ensuring that the other party is guaranteed to express any dissent they have. In contrast, the stronger reading implies that neither party can treat the matter as settled without the assent of the other party. The stronger

173 reading is incompatible with granting one party the authority to have final say over a decision; the matter is settled only if both parties agree to move forward with a particular option.

The weaker reading initially appears attractive because it is intrinsically less demanding of the deliberators while securing mutual participation. However, this stymies the prospects for achieving mutual satisfaction. If one party has final say over a decision, constrained only by allowing the other party to express dissent, then the other party is poorly positioned to push for a decision that better reflects the concerns and values they bring to the decision is limited. Any deliberative influence the dissenting party has over the authority is due in part to the authority’s openness to reconsidering her decision. This renders the subject’s deliberative influence contingent on dispositions or proclivities the authority has towards collaboration. Consequently, the weaker reading prematurely limits the ability of the disempowered party to strive for mutual satisfaction.

By contrast, the stronger reading does not award authority to settle decisions to one person. This provides both parties with the leverage required to ensure that their dissent is given the opportunity to change the outcome of a decision-making process. This also will have the likely effect of encouraging more participation from the deliberative parties; if one knows that neither party has the authority to terminate deliberation unilaterally, then one will be more likely to raise challenges, express hesitations, or communicate their disagreement. The first desideratum for our account of decisional authority, then, is that when shared, neither party can treat the question of which course of action to take as settled without the assent of the other party.

174 The second desideratum concerns the compatibility of possessing decisional authority with deference to the other party. Since the first desideratum rules out the prospects of awarding decisional authority to one party, one might take this to imply that the end result of a medical decision-making process must be either mutual satisfaction with the resulting decision, or a mutual dissolution of the decision-making process. However, assent to a decision should be compatible with unilateral private disagreement; possessing the authority to withhold assent on the grounds that one is dissatisfied with the final decision does not imply that one must withhold assent on these grounds. In other words, possessing the authority to withhold assent to strive for a more satisfactory decision is compatible with the acceptability of deferring to another’s decision despite one’s dissatisfaction. A satisfactory account of decisional authority should not, when shared, imply that one party’s deference to the other’s decision compromises her decisional authority.

However, merely permitting deference in cases of unilateral dissatisfaction is insufficient as a desideratum of shared decisional authority in medical decision-making. In the previous chapter, I defended the claim that the value of minimizing domination is sufficient to generate a presumption that in cases of intractable faultless disagreement, the doctor will defer to the patient’s decision in the end. Absent this presumption, the patient will be subject to unacceptably high costs for noncooperation with a decision that is deeply significant to him, on grounds that are not responsive to the patient as a deliberative partner. Therefore, our account of decisional authority should not merely be compatible with the claim that deference to one party’s decision is acceptable; it should be compatible with the claim that in certain cases, deference to one party’s decision (generally, the patient’s) is presumed.

175 The second desideratum for our account of decisional authority, then, is the standing expectation that in cases of intractable faultless disagreement, the doctor ought to defer to the patient. This creates a trickier needle to thread; while our account of decisional authority must provide for both parties the authority to withhold assent from decisions they disagree with, it must also be compatible with the claim that deference is due to patients in cases of intractable disagreement over a decision.

In sections II and III, I consider two accounts of decisional authority that are commonly found in the literature on medical decision-making; when shared, these accounts might satisfy our desiderata. First, one might propose that doctor and patient can share authority over the decision by possessing authority over what each is willing to commit herself to. That is, both doctor and patient enjoy authority by having a right to veto certain treatment options. Second, one might argue that doctor and patient can share decisional authority by granting each person authority over particular questions that are constitutive of the final decision. I will argue that neither of these conceptions of decisional authority satisfy both of the desiderata established. The common failure between these two accounts is their failure to award both parties the authority to reopen deliberation. Only if our conception of decisional authority is understood in terms of this power can the demands of the partnership model be met.

II. Mutual Vetos

On one approach to decisional authority, the authority to make a decision amounts exclusively to the legitimate exercise of one’s power to consent to or refuse to act on an option.225 ‘Consent’ refers in this case to a normative power to waive a prohibition against an

225 Faden and Beauchamp, History and Theory, 277-280.

176 action. Consent is necessary, for example, to proceed with surgery; absent the consent of an individual, surgical intervention is an invasion of bodily autonomy.226 Moreover, individuals have the legitimate power to explicitly refuse a course of action; this power is particularly important in cases where, given the reasons for intervention and the conditions under which such intervention might take place, the one intervening might reasonably assume that the subject would not refuse such intervention.

How might decisional authority of this form be shared? Either both doctor and patient possess the right to refuse to proceed with a course of action, or consent from both doctor and patient is required before proceeding; the ‘or’ is inclusive. But a conception of shared decisional authority as joint consent is unhelpful. If an individual has decisional authority if and only if his will is structurally decisive with respect to some practical question, then in a case where decisional authority is shared and only one party consents to a resolution to the practical question, the individual’s exercise of his will fails to settle the practical question. The conjunction of the patient’s and doctor’s wills is structurally decisive; but this does not distribute to the individual wills. Thus decisional authority is not shared by the doctor and patient as individuals; decisional authority is unshared, but attaches to a plural subject that consists of the doctor and patient.227 This is unhelpful in cases of conflict, like in ADENOMA, because any

“plural subject” has been compromised. It is precisely because the doctor and patient disagree that the question of shared decisional authority becomes relevant. Therefore, we should reject an account of shared decisional authority that identifies it with a requirement for joint consent; an

226 I set aside the vast discussion of what must obtain for consent to take place; all that matters here is that a prohibition is waived, by reference to a normative power capable of waiving such a prohibition when exercised. 227 Margaret Gilbert, “Shared Intention and Personal Intentions”, Philosophical Studies: An International Journal for Philosophy in the Analytic Tradition 144, no. 1 (2009): 179-182.

177 account of shared decisional authority of this sort is more plausible as an account of independent rights of refusal.

The right of refusal is foundational to the institutional practice of informed consent for patients, but some bristle at extending an equivalent right to doctors. Doctors, they argue, waive this right to refusal when they sign up to be doctors; even if a doctor is opposed to certain treatments or courses of action, her personal opposition is irrelevant when a patient autonomously decides that he wishes to embark on that course of treatment.228 It is, after all, the patient’s health that is the object of shared medical decision-making. However, most everyone grants that doctors are not obliged to acquiesce to all patient requests. As noted in Chapter 2, doctor-patient disagreement presents no special problem for the partnership model when a patient requests a treatment that is not deemed medically acceptable. This is because doctors may permissibly refuse to provide access to the requested treatment in these cases, independently of the voluntariness and informedness of the patient’s decision. Therefore, there is some precedent for granting doctors the right to refuse to act on certain patient requests. The mutual veto account simply extends the authority to rule out courses of action to the doctor for a wider range of cases.

On the veto account, both the doctor and the patient have the authority to veto any option they oppose.229 By vetoing an option, the doctor or patient removes it from contention as a solution to an unresolved practical question in shared decision-making. To treat a veto as

228 See Julian Savulescu, “The Proper Place of Values” American Journal of Bioethics 7, no. 12 (2007): 21-22; Ronit Stahl and Ezekiel Emanuel, “Physicians, Not Conscripts—Conscientious Objection in Health Care” New England Journal of Medicine 376, no. 14 (2017): 1380-1385. 229 An example of this model is Robert Veatch’s account of the doctor-patient relationship. Despite the fact that he envisions the doctor and patient as standing in a significantly unequal partnership, he still states that both parties must have the right to refuse to act on particular decisions. For Veatch, this commitment derives from a broader social contract that gives individuals in society the right of refusal. Veatch, “Principles of Medical Ethics”, 69.

178 structurally decisive, then, is to treat the vetoed option as excluded from further deliberation; the considerations in favor of acting on that option are “silenced”.

To illustrate how the mutual veto account works, let’s consider two possible scenarios for a conflict free-version of ADENOMA. Call this ADENOMA*. After having been diagnosed with a microadenoma, Phoebe and Ellen face three choices for how to proceed: surgical removal, medication, and merely monitoring hormone levels. The mutual veto account might allow Ellen and Phoebe to resolve the question of how to proceed by processes like those below:

WINNOW: Phoebe informs Ellen that she wants to address the adenoma immediately. Ellen informs Phoebe that she is unwilling to authorize surgical intervention at this stage. Given these exercises of veto power, the resulting choice is medication.

RULE OUT: Ellen proposes monitoring Phoebe’s hormone levels as a good step at this stage. Phoebe vetoes the prospect of merely monitoring her hormone levels. Phoebe’s veto of mere monitoring closes off a possible solution to the question of how to proceed. Ellen and Phoebe are now left deliberating between surgical intervention and medication.

In both of these scenarios, Ellen and Phoebe both have the authority to remove options from the set of available solutions. When either party vetoes an option, their veto settles the question of whether to act on an option by giving us conclusive reason to abandon the option. Thus in a case like WINNOW, Phoebe settles the question of whether to merely monitor hormone levels; Ellen settles the question of whether to proceed with surgery. This conception of decisional authority, when shared, ostensibly awards the doctor and the patient the same standing with respect to the decision—both of them are capable of unilaterally settling practical questions, but only by excluding certain options from further deliberation.

Does the mutual veto account satisfy the desiderata for our conception of shared decisional authority? The first desideratum states that our account of decisional authority, when shared, will prevent either party from having the authority to unilaterally terminate deliberation.

179 Note the mutual veto account provides no foundation for an account of joint deliberation. The veto power account of decisional authority is compatible with a decision-making process devoid of dialogue and public presentation of reasons. Consider the following picture: Ellen informs

Phoebe of her diagnosis of a pituitary adenoma and gives her several brochures on the treatment options. Ellen then provides Phoebe with the opportunity to think through her treatment options independently, while the doctor does the same. They rank their preferences and compare rankings, seeing if there is any overlap. There is no reason why Ellen and Phoebe need to deliberate publicly, in the way envisioned by the partnership model.

This does not mean that the mutual veto account fails to satisfy the first desideratum. If

‘unilateral termination of deliberation’ simply means settling the matter for both parties about how they will proceed, then as long as both doctor and patient have the authority to refuse to act on a decision, neither party has the authority to unilaterally terminate deliberation. Moreover, the partnership model’s vision of medical decision-making as an open dialogue need not fall out of the account of decisional authority. The ideal of open dialogue between the doctor and patient could be defended directly by appeal to the normative foundation for the partnership model.

Therefore, the failure of the mutual veto account to require joint deliberation does not imply its inadequacy as an account of shared decisional authority.

However, there might be cases in which doctor and patients’ respective exercises of their veto powers end up undermining one party’s share of decisional authority. Consider the following outcome of a veto-based decision-making procedure:

180 Table 1: ADENOMA*

Ellen Phoebe Surgical intervention X ✓ Medication therapy ✓ X Monitor hormones ✓ X

Ellen has vetoed surgical intervention. However, this is the only option that Phoebe has not vetoed. This is a case of gridlock. How might Ellen and Phoebe proceed from gridlock?

There are three options.

First, the distribution of Ellen and Phoebe’s vetos might lead to a dissolution of the decision-making process; because both of them have permissibly exercised their veto power and ruled out all of the available solutions, both simply must walk away. But there is no reason to suppose that revision of one’s prior veto is off the table; it is entirely possible to withdraw authoritative directives. So the path forward should not rule out revision of at least one veto, even if ultimately both parties decide to walk away from the decision-making process.

Second, Ellen and Phoebe’s vetos might cancel each other out, thus wiping the deliberative slate clean. If one’s veto is structurally decisive, then one’s commitment to not-훗 excludes from deliberation considerations in favor of and against 훗-ing; one’s veto is not an additional reason to be balanced with these considerations. But in cases where the conflict is between two authoritative commitments, one to not-훗 and one to not-횿, and 훗-ing and 횿-ing are the only available solutions to the practical question, gridlock might be resolved by nullifying both vetos. Thus Phoebe and Ellen are back to square one with respect to deliberation.

This approach seems to lead us back into the rejected picture of shared decisional authority as mutual consent. If the only way that we can move forward from a case of gridlock is

181 to nullify both vetos, then this is tantamount to stating that neither Phoebe nor Ellen’s wills are structurally decisive. Only the conjunction of Phoebe and Ellen’s wills is structurally decisive.

The “authoritativeness” of either Ellen or Phoebe’s individual veto is conditional on the other party’s exercise of her veto power. Thus this approach to resolving gridlock depends on abandoning the idea that each party has a share of decisional authority, where that means each party’s will is structurally decisive in some sense. Only the plural subject of their wills has decisional authority. Wiping the deliberative slate clean, then, is not an acceptable solution to the gridlock problem.

Third, Ellen and Phoebe’s conflict might be resolved by nullifying only one person’s veto(s). Conflict is resolved by a norm that dictates whose veto should stand. And given the second desideratum for our account of shared decisional authority, the natural resolution would be to override the doctor’s veto. Since considerations of non-domination generate a presumption in favor of deferring to patients in cases of intractable faultless disagreement, gridlock resolution should be responsive to this presumption. Consequently, in the case of gridlock in ADENOMA*,

Ellen’s veto of surgery would be nullified; she would have to defer to Phoebe’s request for surgery.

However, this strategy undermines the prospects for open dialogue. While our account of shared decisional authority need not ground joint deliberation, our account of shared decisional authority should not prohibit achievement of the open dialogue and discussion envisioned by the partnership model. If the gridlock in ADENOMA* is resolved by requiring Ellen to defer to

Phoebe’s vetos (and so in effect, the Phoebe’s decision to proceed with surgery), then this strips

182 Ellen of any authority to push for further deliberation. But this is precisely what is required in order to secure the possibility that the ideals of the partnership model be realized.

One might argue, however, that resolution need not require the doctor to defer to the patient in cases of gridlock. Rather, the norm need only be that the doctor’s veto is cancelled. In

ADENOMA*, Ellen and Phoebe cannot presume that the question of whether to proceed with surgery has been answered in the negative. However, they cannot therefore presume that it has been answered in the affirmative. By nullifying Ellen’s veto, surgery is now an open question.

This makes room for continued deliberation about whether to engage in surgery. Moreover, if gridlock is resolved by deference to the patient’s decisions, then this incentivizes the patient to veto even the options that she merely disprefers. If Phoebe’s actual attitude towards medication is merely that it ranks below surgery as an acceptable course of action, then vetoing medication is disingenuous. Vetos are meant to capture that a course of action is a dealbreaker, not that it is a dispreferred option.230 If Ellen must defer to Phoebe’s “decision” for surgery by way of vetoing medication and monitoring, then Ellen would seem to be subject to an unacceptably dominating decision-making arrangement. The proper way to resolve gridlock then, then, is merely that to nullify Ellen’s veto; this is compatible with treating the relevant practical question as open. Thus resolving gridlock by nullifying doctor’s vetos need not preclude continued dialogue about the treatment.

However, this solution reveals the limits of the mutual veto account as an account of shared decisional authority. For the doctor’s position now is the same as the doctor’s position on the contractor model. The doctor’s insistence on continued deliberation must be justified on the

230 Thanks to Tristram McPherson for this articulation of the distinction, and for discussion of this point.

183 grounds that the patient’s vetos are illegitimate; perhaps the vetos are insincere in the way described above, or perhaps the vetos clearly fail to track the relevant reasons above, or perhaps the vetos have resulted in a decision that would violate competing moral duties if acted upon.

Whatever the content of the challenge, the point is that the doctor’s continuation of dialogue is not open dialogue between partners, but instead a challenge to the patient’s authority to have vetoed the alternative courses of action. This reintroduces the instability of the doctor’s position as a deliberative partner found in the contractor model; the patient has the authority to settle the final decision about how to proceed, but the doctor has some recourse to challenge the decision reached. Consequently, the mutual veto account fails to satisfy the first desideratum for our account of decisional authority.

III. Independent Domains

An alternative approach to sharing decisional authority does not award either party authority over the final decision itself, but allocates authority to both parties over specific questions that comprise the final decision. I will refer to these questions as “shaping questions”.

Medical decision-making is a complex process that involves settling multiple questions en route to the final decision; examples include questions about available resources, medical acceptability, relevance of expected effects of a treatment to patient health, relevance of certain non-health-related projects a patient hopes to accomplish, and the goals of care. Depending on how these are resolved, certain answers to the final practical question of how to proceed become possible or impossible, or more or less attractive. Rather than treating decisional authority as something that extends to the final decision about what course of action to take, this approach distributes authority to doctor and patient over shaping questions that, when settled, may close

184 off certain deliberative paths regarding what the doctor and patient will ultimately do. Call this the division of labor approach to sharing decisional authority.231

Unlike the mutual veto account, the division of labor account allows both parties to affirmatively settle shaping questions, but the scope of each party’s authority is restricted to their sets of shaping questions. When one party has authority over a question, their resolution restricts and shapes further deliberation about the final decision. For example, imagine Ellen has authority over the question “What health-relevant outcomes do we want to achieve in addressing

Phoebe’s adenoma?” Once Ellen has determined that the primary health-relevant outcomes are correcting Phoebe’s hormone levels and gaining greater information about the nature of the tumor, this restricts further deliberation about the available treatment options to those that are expected to achieve these health outcomes. Neither party’s will is structurally decisive with respect to the final treatment decision; the final decision is simply an output of the set of resolutions to shaping questions that underlie and surround the decision about how to act. Thus both doctor and patient have complete decisional authority, but only over their respective domains of shaping questions.

The division of labor account is commonly justified by appeal to respective expertise of the parties. Take, as a paradigmatic example, Raz’s normal justification thesis (NJT from here on out):

[The normal justification thesis] claims that the normal way to establish that a person has authority over another person involves showing that the alleged subject is likely better to comply with reasons which apply to him (other than the alleged authoritative directives) if he accepts the

231 Something like the division of labor account is common to discussions of shared decision-making. However it is unclear whether authors in this literature intend to commit to a claim about the division of practical authority, or whether their discussions are based on (reasonable) assumptions about the standard concerns of each party. Given the ideal of open exchange of information and discussion, it is likely the latter.

185 directives of the alleged authority as authoritatively binding and tries to follow them, rather than by trying to follow the reasons which apply to him directly.232

The NJT grounds one party’s authority over a decision in the fact that the authority is better positioned to evaluate the reasons for and against acting than the subject. We can see an analogue of this in the deliberative context; because the patient lacks the expertise and experience of the doctor with respect to medical matters, the patient will deliberate better about the available courses of action if she accepts the doctor’s judgment about desirable health outcomes as a constraint on her further deliberation than if she were to try and evaluate the reasons for favoring certain health outcomes over others on her own. If this is true, then by NJT, the doctor has authority over the question about which health outcomes the doctor and patient will strive for.233

Does the division of labor account satisfy the desiderata for shared decisional authority?

The first desideratum states that neither party is entitled to unilaterally terminate deliberation; they cannot proceed until they have the assent of both parties. This initially appears to be satisfied by the fact that neither party possesses authority over the final decision; the final decision ultimately is an output of the resolutions to all of the shaping questions. Thus neither party has the authority to unilaterally terminate deliberation; deliberation simply is terminated as a consequence of each party settling their respective shaping questions. The second desideratum states that our account of decisional authority should be compatible with a presumption that the doctor defers to the patient in cases of intractable disagreement. This also may initially appear to be satisfied; if doctors and patients both settle their respective shaping questions, deliberate

232 Raz, Morality of Freedom, 53. 233 The success NJT has in grounding the legitimacy of an individual’s ability to issue a presumptive reason for action is questionable. For a challenge to the success of NJT at grounding this robust form of practical authority, see Stephen Darwall, “Authority and Reasons: Exclusionary and Second-Personal”, Ethics 120, no. 2, (2010): 257-278.

186 correctly according to the constraints laid down by their resolutions of these questions, and yet arrive at different conclusions about how to proceed, it is likely that the reasons relevant to deliberation underdetermine the final decision.234 Consider the following practical question in

Phoebe and Ellen’s decision-making:

REGIMEN: Phoebe has been convinced by Ellen to try out cabergoline. Given her expertise, Ellen has authority to determine dosage. She decides that Phoebe should take 1mg of cabergoline per week. Ellen has prescribed Phoebe a regimen of two 0.5mg tabs per week. However, Phoebe wants to structure her medication regimen so as to minimize negative consequences of side effects. Thus Phoebe wants to take four 0.25 tabs per week to lessen the intensity of any side effects. Ellen and Phoebe conflict over which regimen Phoebe should adhere to.

In this case, the presumption of deference to Phoebe’s preferred course of action does not compromise Ellen’s share of decisional authority. Ellen has settled all the questions over which she has authority, and Phoebe’s decision to structure her medication regimen differently than

Ellen’s prescribed regimen does not frustrate Ellen’s authority to determine dosage. Moreover, both Ellen and Phoebe’s preferred regimens are compatible with achieving the health-relevant outcomes to these questions. Any conflict here is a matter of preference; both regimens are supported by the reasons guiding deliberation. If all intractable disagreement is comparable to

REGIMEN, then a presumption that doctors defer in cases of intractable faultless disagreement is compatible with the preservation of the doctor’s share of decisional authority. It would appear, then, that the division of labor account satisfies the desiderata for shared decisional authority.

Note, however, that this relies on a particular interpretation of the first desideratum— namely, that neither party have the authority to unilaterally terminate deliberation with respect to the final decision. The division of labor account does allow for both parties to unilaterally settle shaping questions. This is important because resolutions of shaping questions are a clear source

234 Raz, Morality of Freedom, 48-49

187 of disagreement between doctors and patients over the final decision. If the patient takes issue with the doctor’s resolution of the question about which health outcomes the doctor and patient should strive to achieve, then disagreement over the final decision is not simply a matter of underdetermination, but rather the extension of a disagreement over the resolution of a shaping question.

Does the authority to unilaterally terminate deliberation over a shaping question matter for the partnership model? This depends on the explanations of disagreement in cases like

ADENOMA. In REGIMEN, Ellen and Phoebe’s disagreement is a product of underdetermination; their disagreement is a matter of clashing preferences over courses of action that are equally supported by the available reasons. In ADENOMA, Ellen and Phoebe disagree over the final decision, but their disagreement is not a product of divergent preferences over courses of action that are equally supported by the resolutions of the questions shaping deliberation. Ellen and Phoebe disagree over the final decision because of a disagreement over which considerations should be given greater weight in deliberation. Note that, depending on how this question is resolved, the output is very clear. If Phoebe’s preferred prioritization wins, then the output of deliberation will be surgery; if Ellen’s wins, then the output will be medication. In this case, the clear point of dispute is the proper resolution of a specific question: what is the top priority when evaluating the goodness of a treatment option? Thus the partnership model would seem to be concerned not only with the authority to unilaterally terminate deliberation over the final decision, but to unilaterally terminate deliberation over shaping questions as well.

188 At this point, the division of labor account could go one of two ways. First, the division of labor account might break down a disputed shaping question into further shaping questions.

For example, if dispute over the final decision is a consequence of dispute over which prioritization of values we should adopt in deliberation, then we could break down this question into shaping questions over which we could assign authority. Perhaps the patient has authority over determining the non-health-related goals of care, and the doctor has authority over determining the health-related goals of care. If there is dispute over the resolution to the question about which prioritization of values to adopt, we can evaluate whether the dispute is simply a product of underdetermination, or whether it is a dispute over some further shaping question. If the dispute is simply a product of underdetermination, then the demand that the doctor defer to the patient’s resolution holds for reasons of non-domination. If the dispute is a result of disagreement over some further shaping question, then we can break this down into some further series of shaping questions over which we can allocate authority.

However, this strategy for addressing disputes over shaping questions is unattractive.

First, it relies on the assumption that there will be some point at which dispute over a shaping question is a product of underdetermination, such that independent considerations of non- domination will support deference to the patient. But there is no reason to assume that this is the case; given the complexity of medical decision-making and the depth of practical considerations it touches on, it seems likely that there is a shaping question to be articulated that captures the dispute between the doctor and patient. “Underdetermination” in these cases is likely not a product of true underdetermination, but of an inability to discover or articulate the shaping question under dispute.

189 Second, there are some disputes where the more natural explanation for the division of labor account involves an appeal to the authority of one party over the shaping question. To illustrate, let us revisit MASTECTOMY:

MASTECTOMY: Patricia has recently been diagnosed with early-stage breast cancer in her left breast. Her doctor Dorothy believes that a lumpectomy coupled with radiation therapy is the best course of action from a medical standpoint. Patricia, however, has firmly decided that the best choice for her is a bilateral mastectomy, given her values. For Patricia idolizes Angelina Jolie. She finds her to be an inspiration for women everywhere, and she strives to model her life after Jolie’s. Given Jolie’s championing for “previvor” status, Patricia desires to have the bilateral mastectomy; it is a natural continuation of her pursuit to be like Jolie. Dorothy thinks that Patricia is being cavalier about the invasiveness of the bilateral mastectomy; and that Patricia is taking unnecessary risks to her health for silly reasons. Dorothy wants to try and persuade Patricia to reconsider whether the risks associated with bilateral mastectomy are worth it. But Patricia does not want to discuss alternative treatment options; she wants Dorothy to authorize the mastectomy.

MASTECTOMY is a compelling case for the permissibility of the doctor’s pushback not just because Patricia deprioritizes considerations about her health relative to considerations about a non-health-related project, but because the relevant non-health-related project is one many find absurd. If the disputed question is which prioritization of values we should adopt in guiding deliberation, then one possible source of the dispute concerns the value of Patricia’s life-shaping project. While Patricia takes her project of living like Jolie extremely seriously, Dorothy is skeptical of its worth. Thus the shaping question regarding proper prioritization is disputed in part because there is disagreement about the value of Patricia’s life-shaping project.

The solution under consideration suggests we try to identify whether this dispute is a product of underdetermination, or whether the dispute emerges from a deeper disagreement. But this overlooks a third option for explaining the disagreement. Sometimes authoritative decisions are controversial; an outside party might judge that it is appropriate to challenge the decision the

190 authority has made.235 However, the mere fact that disagreement arises does not imply that no one has the authority to settle the question. This third option preserves the individual’s authority over the question, while acknowledging that the decisions made by legitimate authorities might inspire dissent.

In MASTECTOMY, Dorothy rejects Patricia’s prioritization of values in part because she judges that Patricia’s top priority is not particularly worthwhile. But between Dorothy and

Patricia, there is good reason to suppose that Patricia is better positioned to make that judgment than Dorothy. More precisely, there is good reason to think that Dorothy is not particularly well- positioned to determine whether Patricia’s chosen life-shaping project is in fact good for her.

Dorothy is generally more likely to make decisions that respond to Patricia’s overall well-being if she accepts Patricia’s decisions about what is important to her, rather than independently trying to determine what is good for Patricia. Thus on the division of labor picture, it is natural to suppose that Patricia has authority to determine whether some non-health-related project should be included as a consideration in deliberation.

The division of labor account, then, might alternatively try to address the problem of disagreement over shaping questions by stating that ultimately, there are some shaping questions over which one of the parties has authority. Disagreement with an authoritative decision must not be ignored, but it does not imply that someone lacks authority to issue the directive with respect to the question. The relevant question is whether the decision reached by the de facto authority successfully creates a preemptive reason to act as dictated. Assessing the disagreement in these

235 “Doctors should try to persuade patients to revise their conceptions of the good life or their choices in relation to their conceptions, but they must also be open to the possibility of radical and justifiable diversity in plausible conceptions of the good life.” Julian Savulescu, “Controversial Choices”, 33.

191 cases, then, involves assessing whether someone has successfully leveled a challenge to the authoritativeness of the resolution.

Note that the division of labor account need not deny that questions may be more fine- grained than how we initially carve them up. The “fact-value” division of labor account in shared decision-making has been widely and rightly lambasted as oversimplifying the nature of medical deliberation.236 However, the division of labor account should also be comfortable with assuming that we can clearly state that there are shaping questions over which one is authoritative; this is central to the appeal of the division of labor account. Thus between the solution of treating all disputes as either a matter of refining shaping questions or reaching underdetermination and the solution of viewing some disputes as challenges to authority, the division of labor account should ultimately adopt the latter solution.

Does the conception of disagreement as a challenge to an individual’s authority over a decision, be it the final decision or a shaping question, conflict with the ideals of the partnership model? One serious worry for this conception of disagreement is how demanding it is of the dissenter. Disagreement is a legitimate challenge to a decision only if it can show that the decision reached by the authority is deficient in some way. This places the burden on the dissenter to demonstrate that their challenge is worthy or viable in some way. But if the doctor and patient truly are partners in decision-making, then dissent should not have to meet some threshold of acceptability in order for their disagreement to be taken seriously as a challenge to the decision reached. Dissent on its own should be sufficient to reintroduce deliberation.

236 Brock, “Ideal of Shared Decision-Making”, 28-47; Emanuel and Emanuel, “Four Models…”, 2224.

192 This is an important distinction for participants on the partnership model, particularly with respect to patient participation. Given the aims of the dissertation to challenge the dominance of patient self-determination, the majority of the discussion has focused on ensuring that doctors are empowered to reopen deliberation in cases where patients have reached treatment decisions. However, the partnership model is a two-way street. It should not be lost in the discussion that patients must also be empowered to reopen deliberation in cases where doctors reach decisions patients disagree with. But patients often feel cowed by the feeling that they must prove to their doctors in decision-making that their dissent is worth taking seriously.

This is particularly heightened by the doctor’s expertise; because it is difficult for patients to articulate their concerns through the language and lens of medicine and health, a structure of authority relations that treats the significance of dissent not as a matter of the substance of the challenge, but of the source of the challenge, is more likely to make both participants feel empowered to freely participate in deliberation.

The failure of both the mutual veto account and the division of labor account of decisional authority to provide a foundation for the partnership model is that they conceive of decisional authority as the power to create a duty to comply with a decision. Mere disagreement or conflict with a decision, then, is morally equivalent to the lack of desire to satisfy a moral obligation—the subject might not want to comply, but that absence of a desire is irrelevant to whether they have an obligation to comply. Similarly, even if one privately disagrees with a decision made by an authority, this means nothing with respect to their obligation to comply. As a result, these accounts of decisional authority are prohibitive with respect to achieving the ideals of the partnership model. If the distinctive feature of the partnership model is the importance it

193 places on open dialogue and discussion, then our conception of decisional authority must include the authority to reopen deliberation in the face of a clear decision. Thus we require a distinctive approach to decisional authority, one that goes beyond the conception of decisional authority at the heart of the paternalistic and contractor models.

IV. Shared Deliberative Standing

In the previous two sections, I considered two possible accounts of decisional authority that, when shared, may provide a viable foundation for the partnership model. The mutual veto account failed insofar as it could not reconcile the retention of the doctor’s decisional authority with the presumption of deference to patient decisions in cases of conflicting vetoes. The division of labor account struggles to avoid unilateral termination of deliberation; while no one possesses authority over the final decision, unilateral authority over “shaping questions” renders the legitimacy of the power to challenge decisions normatively unstable; it shifts a central problem for both the paternalistic and contractor models from the final decision to various shaping questions.

Both the mutual veto account and the division of labor account do not coerce participants into complying with decisions they disagree with; exit from the decision-making process remains an option.237 However, they also leave one party little recourse with respect to reopening deliberation. This is a problem for a model committed to open dialogue and disagreement insofar as either party may be ill-positioned to demonstrate that their disagreement justifies overturning a decision made by an authority. The absence of coercion to comply does not warrant reopening deliberation; it merely permits one party to exit the relationship. As should be clear, this is

237 Although exit might not always be permissible for the doctor. Much of this will hang on resolution of disputes about conscientious objection, as well as contingencies concerning alternative provider options for patients.

194 unacceptable for securing the permissions and demands of the partnership model. Consequently, we need a conception of decisional authority that focuses predominantly on authority in deliberation.

Here I propose that we turn towards a set of conceptual resources found in the literature on shared agency. Shared agency concerns itself with the phenomenon of joint action or collaboration; this phenomenon is different from groups of individuals merely engaging in independent action that navigates around other parties. When two parties are engaged in shared action, there is a specific practical commitment of each to acting with the other party; in cases of individual strategic action, other persons are viewed as relevant to one’s action only insofar as they might present obstacles or assistance in one’s action.238

Two central questions in shared agency are (1) the nature of the normative relationship between two (or more) parties engaged in joint action, and (2) how an individual can simultaneously possess practical authority while failing to have the authority to unilaterally make decisions.239 There are many proposals regarding the nature of the normative relationship between two parties engaged in joint action240; in what follows, I outline a positive proposal inspired by Abraham Roth’s account of practical intersubjectivity.241

238 An example of another’s assistance in one’s own action that does not require shared agency would be a cyclist in a race, using his competitors’ bodies to reduce drag. By being responsive to the placement and maneuvers of his competitors, the cyclist can use that to improve his own performance and gain a competitive advantage. But this is different from a group of people going for a training ride together. 239 David Velleman, “How to Share an Intention”, Philosophy and Phenomenological Research 57, no. 1, (1997): 32-35. 240 Accounts other than Roth’s include, but are not limited to: Michael Bratman, Shared Agency: A Planning Theory of Acting Together, (New York: Oxford University Press, 2013), 85-106; Margaret Gilbert, “Obligation and Joint Commitment”, Utilitas 11, no. 2 (July 1999): 143-163; Facundo M. Alonso, “Shared Intention, Reliance, and Interpersonal Obligations”, Ethics 119, no. 3 (April 2009): 444-475; Christopher McMahon, “Shared Agency and Rational Cooperation”, Nous 39, no. 2 (June 2005): 284-308. 241 Roth, “Practical Intersubjectivity”, 65-91.

195 Roth’s account of practical intersubjectivity draws in part on Michael Bratman’s account of intention.242 Intentions are mental states—distinct from beliefs and desires—that serve as fixed points in the course of practical deliberation. They enable us to engage in long-term planning that facilitates coordination and execution of action by allowing us to settle practical questions. By settling some practical questions, intentions shape our deliberative framework in a given context, allowing us to retain focus on the relevant issues and eventually develop a fuller plan of action.

Given this functional role, intentions generate certain rational requirements for our practical deliberation that mere desires do not generate.243 Phoebe may worry about how a treatment option will affect her ability to complete her dissertation. However, the shape Phoebe’s concern takes may change the shape of her deliberation. If Phoebe merely desires to complete her dissertation in the next three months, this desire will give weight to some options over others.

However, should Phoebe fail to rule out from consideration the treatment options that impede cognitive performance, she would not be rationally criticizable—she’d be perfectly fine to consider treatments with these effects.

By contrast, if Phoebe intends to finish her dissertation in the next three months, then

Phoebe’s failure to rule out treatments that prevent her from doing so is rationally criticizable.

Intention does not merely track what one has most reason to do; intention involves an active

242 Michael Bratman, Intentions, Plans, and Practical Reason, (Cambridge: Harvard University Press, 1987), 15-35. 243 One might worry whether adopting a functionalist account of intention conflicts with the possibility that intentions can generate rational requirements. This is an important question that should be explored. However, what is of primary importance for my purposes (and the purposes of practical intersubjectivity) is that there is a distinctive attitude one can take in practical reasoning—a commitment that establishes a fixed point in deliberation—that has rational significance. Bratman has developed a functionalist account of this commitment. But it seems entirely plausible that one could give a non-functionalist account of this commitment. Thus practical intersubjectivity follows Bratman not for his functionalism, but for his account of this distinctive mental activity which has rational significance. Thanks to Abe Roth for presentation and discussion of this point.

196 commitment to endorse or avoid particular courses of action. By intending to finish her dissertation in the next three months, and yet continuing to consider treatment options that she knows will prevent her from doing so, Phoebe fails to shape her practical deliberation appropriately, in light of her commitments. In virtue of serving this functional role, intentions impose specific rational requirements on individuals that desires do not.244 Intentions, therefore, entail requirements that shape and govern further practical deliberation.

Just as coordination and planning of temporally extended activity is essential to our lives, coordination and planning of activity among agents is just as imperative. Our ability to move about the world involves not merely navigating around other agents, but also working with other agents to realize our own ends. Agents may also share ends and so work together to ensure that they are realized. Medical decision-making between a doctor and patient is a clear example of such shared activity—even when robust mutual participation is absent, the doctor and patient coordinate and plan a course of treatment together to realize the patient’s goal of improving her health. Consequently, drawing on the resources from an account of shared intention provides a promising framework for medical decision-making.

Bratman provides his own account of shared intention, which takes as its starting point an individual intention held by each party.245 Individual intentions have the propositional form: “I intend that”. A shared intention requires that each party form an individual intention, but whose content refers to the other party. Therefore, each party must have an intention of the form “I

244 Bratman separates intentions as conduct-controlling and desires as conduct-influencing. Bratman, Intentions, 16. 245 Bratman, Shared Agency, 40-48.

197 intend that we Φ”.246 Through this intention, each party commits to shaping further practical deliberation around the involvement of the other party.

Given that shared intention simply is a network of interlocking individual intentions,

Bratman’s account of shared intention generates interpersonal analogues of the rational requirements that one’s prior intentions impose on further deliberation. Both parties’ relevant sub-intentions must be consistent with each other, and there must be means-end coherence of the sub-intentions and the intended end—sub-plans must mesh.247

The achievement of mesh between the sub-plans of the partners is the locus of norms governing shared activity. However, Bratman secures the ability of another’s intentions to create rational requirements for oneself (hereafter referred to as ‘rational authority’) through a “bridge intention”. Each of us must intend that we Φ by way of our intentions that we Φ. Imagine Phoebe and Ellen both intend that “they” treat Phoebe’s adenoma. However, Ellen intends to execute this intention by forcibly drugging Phoebe and performing surgery in her office. In this case, Ellen’s action seems to be inconsistent with the intention that “they” treat Phoebe’s adenoma, for

Phoebe’s intention is irrelevant to Ellen’s deliberation and action. It plays no role in Ellen’s planning about how to act on this intention. Given that shared intentions allow for interpersonal coordination and planning, each individual intention “I intend that we Φ” is inadequate for realizing the interpersonal coordination and planning shared intentions enable.248 Therefore, the

246 Bratman, Shared Agency, 42. 247 Bratman, Shared Agency, 53-56. 248 Note the bridge intention does not specify an anti-coercion condition. Coercion that bypasses the intentional agency of the other party is incompatible with the bridge intention, but many instances of coercive behavior do not require such bypassing (threats, for example, seem to attend to the individual’s intentional agency, by attempting to influence the intentions the coerced party forms). Bratman distinguishes between shared intentional activity and shared cooperative activity—shared cooperative activity contains an independently justified, anti-coercion

198 further intention that we Φ by way of our intentions that we Φ is necessary for capturing the state of affairs that plays the intended functional role.

Roth rejects Bratman’s reductive normativity for shared intention. On Bratman’s reductive approach, one party’s rational authority over the other is purely indirect; the patient’s intentions have rational authority in the doctor’s deliberation only if the doctor has formed the bridge intention—the intention to coordinate his intentions with his patient’s intentions in the course of their deliberation. Thus any rational authority the other person’s intentions have in one’s own deliberation is by way of one’s own intention to coordinate intentions.

Roth’s proposal begins by distinguishing two ways other people’s intentions might figure into our practical deliberation. Consider ADENOMA: Phoebe, as a patient engaged in joint deliberation, forms the intention to procure surgery to remove her adenoma, and she informs

Ellen that she intends to undergo surgery. There are two ways to capture how Phoebe’s intention figures into Ellen’s deliberation.

On one account, we might say that Phoebe’s intention provides Ellen a consideration in favor of surgery, one to weigh against competing considerations. For example, Ellen might treat

Phoebe’s intention to undergo surgery as a compelling reason to start looking at possible dates when the surgery could be performed. However, Ellen might also decide that Phoebe’s intention to undergo surgery does not outweigh the expected benefits of pharmaceutical intervention; in this case, Ellen would not act irrationally in forming the intention to prescribe medication. In this case, Phoebe’s intention does not possess any special standing for Ellen—Phoebe’s intention is simply one reason among many with respect to the question of how to treat Phoebe’s adenoma.

condition. See Michael Bratman, “Shared Cooperative Activity” Philosophical Review 101, no. 2 (April 1992): 327-341.

199 This is how Bratman’s account of interpersonal normativity treats the intentions of the other party.

Alternatively, we might say that Phoebe’s intention constrains Ellen’s further deliberation with respect to pharmaceutical intervention. Even if Ellen had initially thought that medication was the best course of action, she could not rationally form the intention to treat

Phoebe’s adenoma via pharmaceutical intervention in the face of Phoebe’s intention to undergo surgery. This is because Phoebe’s intention settles the question of whether to prescribe cabergoline for Ellen. Ellen is now (defeasibly) rationally required to rule out cabergoline, and so to shape further practical deliberation accordingly. In this case, Phoebe’s intention is rationally authoritative for Ellen—her intention creates a fixed point in Ellen’s deliberation, one she must work around.249

Practical intersubjectivity extends Bratman’s account of the functional role of our own intentions in temporally extended deliberation, to another’s intentions in collaborative deliberation. If I have resolved to attend a reading group on Tuesday, this intention constrains further deliberation. Should I treat my going to the reading group on Tuesday as just another consideration to weigh, I fail to recognize the standing my past intention has in my deliberation.

Similarly, if I commit to our collaboration, your intentions will not function as some of the relevant reasons among many in the formation of my intentions. Your intentions will settle

249 Bratman might modify the bridge intention proposal to specify that Phoebe’s intentions possess some special status in Ellen’s deliberation. Perhaps Phoebe’s intentions are intrinsically more weighty reasons than competing considerations, or perhaps the bridge intention somehow implies that there is a presumption of deferring to Phoebe’s intention. But it is difficult to provide an account that simultaneously secures the force of practical intersubjectivity presented here and reduces interpersonal normativity to norms of individual rationality that apply to individual intentions with contents referring to another party. If Bratman were to abandon the reductive element of his normativity or were to be able to capture this constraining role in a reductive manner, then Bratman’s bridge intention account might be a perfectly acceptable formulation of practical intersubjectivity. Thanks to Abe Roth for discussion of this point.

200 certain matters in our project—as long as we are committed to a shared project, revisiting the matter requires reopening deliberation.

Talk of one’s intentions constraining another’s deliberation sounds extremely similar to the conceptions of decisional authority considered above. However, there is a key difference between Roth’s account of practical intersubjectivity, and the accounts of decisional authority found above. The division of labor account and the mutual veto account envision decisional authority primarily as a matter of control over a decision. In contrast, Roth’s account of practical intersubjectivity envisions decisional authority as a kind of standing one has with respect to the other party’s deliberation. If one has decisional authority, then one has the standing (a) to close an individual’s practical deliberation with respect to φ-ing, and (b) to reopen practical deliberation with respect to φ-ing, where φ-ing is directly relevant to some broader practical question at hand.

To close practical deliberation with respect to φ-ing is simply to settle some practical question by forming an intention that we act or deliberate in a certain way. For example, if Ellen communicates the intention that they restore Phoebe’s hormone levels to normal range, this establishes a fixed point in both Phoebe and Ellen’s deliberation from which they can deliberate further and which constrains further deliberation. If Phoebe then proceeds to treat merely monitoring her hormone levels as an available option, then either she is irrational or there is not actually an intention to restore Phoebe’s hormone levels to normal range.

To reopen practical deliberation with respect to φ-ing is to reject an established intention.

If Ellen communicates the intention that they restore Phoebe’s hormone levels to normal range, this fixes a point in Ellen and Phoebe’s deliberation. However, Phoebe has the authority to reject

201 Ellen’s intention. If Phoebe challenges Ellen’s intention to restore Phoebe’s hormone levels, then

Phoebe has rejected Ellen’s resolution of the practical question of what the goals of care should be. This rejection has implications not only for Phoebe’s practical deliberation, but also for

Ellen’s. Should Ellen proceed with practical deliberation as though one of the goals of care is restoring Phoebe’s hormone levels, then she would be fail to be responsive to Phoebe’s rejection of her intention; she would be operating as though a key practical question was settled when in fact it is not.

Shared decisional authority as shared deliberative standing, then, awards a weak form of rational control over the individual. Whoever possesses decisional authority has power to shape the course of one’s practical deliberation. But this power need not be exclusive. Both parties are capable of shaping each other’s practical deliberation, in addition to their own.

How does the shared deliberative standing account of decisional authority affect a case like ADENOMA? Imagine that Ellen has informed Phoebe that she in fact has a pituitary adenoma and that there are two relevant courses of action: surgical intervention and medication.

However, there is a highly relevant third option available to Phoebe—she may decide to simply monitor her hormone levels. Ellen informs Phoebe that monitoring her hormone levels is an option, but she does not present this third option as part of the option set about which they will deliberate.

If Phoebe proceeds to deliberate about whether to go with surgery or medication without ever entertaining the question about forgoing intervention, she has failed to consider a course of action directly relevant to the larger practical question about what to do in the face of the diagnosis. Note that Phoebe has not ruled out for herself this third option—she just never takes it

202 up in the first place. Imagine Phoebe chooses the surgery. Is her decision less than fully rational, given that she never contemplates this salient third option?

In this case, Phoebe’s deliberation is perfectly rational, despite overlooking this third option. Specifically, Phoebe’s deliberation is acceptable because Ellen has closed the question of whether to forgo intervention with respect to their project. Ellen has intended that they will commit to intervention; thus she has settled the matter of the kind of course of action they will pursue. By setting up Phoebe’s option set to exclude non-intervention, Ellen has rendered it rationally permissible for Phoebe to focus her practical deliberation on only these two options.

This diverges from views that suggest that patients need to consider all the relevant and acceptable courses of action in order to make a fully rational choice.

One might object that even if Phoebe’s decision is not rationally criticizable, Ellen’s initial construction of the option set is rationally criticizable. However, this conflates two forms of rational criticism. Ellen is not rationally required, by the lights of her prior intentions, to construct the option set to include non-intervention; there is no violation of consistency or means-end coherence in this construction of the option set. However, the construction of the option set may not be adequately responsive to the reasons for including non-intervention in the option set. This is an important form of rational criticism that is still available to us, but it is not the kind of rational criticism that tracks interpersonal rational requirements.

According to the shared deliberative standing account, Ellen has standing to close practical deliberation with respect to the construction of the option set. However, this does not imply the absence of Phoebe’s standing to reopen practical deliberation with respect to the option set. Imagine Phoebe asks about merely monitoring her hormone levels for now. Would

203 Ellen be rationally permitted to proceed with practical deliberation as though the only two options are surgery and medication? No, because Phoebe has the standing to reopen Ellen’s practical deliberation with respect to the construction of the option set.

We could easily reassign the contributions to the deliberative process, so that Phoebe constructs the option set and Ellen reintroduces an alternative option; the same outcome would hold with the different parties in place. Both parties have the power to close the other party’s practical deliberation with respect to some question, and both parties have the power to reopen the party’s practical deliberation with respect to some question. Importantly, this extends to every element of the decision-making process—there is no decision point at which either party lacks the standing to close or reopen deliberation for the other party. Thus we have a conception of shared decisional authority—both parties, in issuing and rejecting intentions, directly affect each other’s practical deliberation.

This brings forth an important difference between the standing account, and the decision- oriented accounts considered previously. Shared deliberative standing differs from the decision- oriented accounts with respect to reopening deliberation—when is the other party’s challenge to a decision sufficient to pressure the decider into reopening deliberation? Both mutual veto and the division of labor account disregard challenges to the authority’s decision as grounds for reopening deliberation, absent sufficient justification for the challenge’s legitimacy. By contrast, the shared deliberative standing picture offers no such protection; it simply awards power to affect the decision-making of the other party. Therefore, on the decision-oriented accounts, a challenge to a decision is legitimate only if it tracks some way in which the decision made by the authority fails.

204 Decisions can fail to be binding on the decision-oriented pictures when the capacities necessary for authority are compromised or absent. Consider Mill’s bridge-crosser.250 Given that the bridge is structurally unsound, it’s reasonable for the observer to assume that the bridge crosser is ignorant of the risk he takes. Thus the observer’s challenge has genuine force—it’s the kind of contribution that could successfully reopen deliberation even if the bridge-crosser is generally authoritative with respect to the decision of whether to cross the bridge. But once the observer is sure that the bridge crosser’s capacities are not undermined, any further disagreement would be irrelevant. Continuing to insist on deliberation would be a stalling tactic, not a legitimate challenge to the decision.

Moreover, the decision-oriented accounts might recognize disagreement as a substantive challenge on the basis of a failure to consider relevant reasons. For example, if a decision requires an unjust distribution of resources, the other party’s challenge to the decision might be sufficient to reopen deliberation and force the decider to deal with the new consideration.

However, whether this challenge is admissible depends on whether it is based on reasons that fall in or outside the authority’s jurisdiction.251 If the challenge to a party’s authority demonstrates that the authority fails to track or incorporate relevant reasons outside the authority’s jurisdiction, then deliberation may successfully be reopened.

What the decision-oriented accounts exclude, however, is disagreement by the other party on matters that are not clearly outside the authority’s jurisdiction. As Raz notes, “if every time a directive is mistaken, i.e. every time it fails to reflect reason correctly, it were open to challenge as mistaken, the advantage gained by accepting the authority as a more reliable and successful

250 Mill, On Liberty, 95. 251 Raz, Morality of Freedom, 62.

205 guide to right reason would disappear.”252 In ADENOMA, Ellen genuinely believes that it is an inferior choice for Phoebe to undergo surgery at this stage. However, Phoebe has made clear that her decision to procure surgery is sound, and it is based on her prioritization of her values. There is no serious question about her capacities, and there is no serious challenge from outside considerations of justice or even duties of beneficence. On the decision-oriented accounts,

Ellen’s disagreement is insufficient to reopen deliberation. At best, all she can do is walk away.

The shared deliberative standing picture, by contrast, does not attend to the content of the challenge—it attends to the source of the challenge. All that matters for constituting a legitimate challenge is that the party issuing it possesses the authority to reopen the decision-maker’s deliberation. Therefore, on the shared deliberative standing picture, Ellen’s disagreement is sufficient to require further discussion prior to any agreement. She need not try to find some evidence of Phoebe having diminished capacities, or try to build a strong moral case against the decision. Her disagreement with proceeding is sufficient. Therefore, the shared deliberative standing picture grants both parties authority with respect to reopening deliberation.

Does the shared deliberative standing picture satisfy the desiderata for an account of shared decisional authority to underpin the partnership model? The first desideratum states that neither party is entitled to unilaterally terminate deliberation; the second desideratum states that in cases of intractable faultless disagreement, the account of decisional authority should be compatible with a presumption in favor of deferring to the patient.

The shared deliberative standing account satisfies the first desideratum because it includes within its conception of authority the power to reopen deliberation by expressing

252 Raz, Morality of Freedom, 61.

206 disagreement. While both parties have the standing to close each other’s practical deliberation by making a decision, such closure must be taken up by the individual. How uptake must occur such that another’s intentions can function as a rational constraint is an interesting question; I set it aside here.253 However, the primary point is that a commitment to a shared deliberative project requires awarding individuals the authority to reopen deliberation; reopening deliberation need not be justified by one party. Given that the shared deliberative standing picture secures this authority for both parties, the shared deliberative standing picture clearly satisfies this desideratum.

But is the shared deliberative standing account of decisional authority compatible with the commitment to defer to the patient in cases of intractable disagreement? If the distinguishing feature of the shared deliberative standing picture is awarding both parties the authority to reopen deliberation, then this suggests that even in cases where there is good reason to defer to one person, a presumption in favor of deferring to the patient is incompatible with retaining the authority to reopen deliberation. Thus the shared deliberative standing account might appear to fail the second desideratum; it achieves a presumption to defer to the patient only by removing or compromising the doctor’s decisional authority.

To see whether the shared deliberative standing account fails the second desideratum, let us consider ADENOMA* again:

253 See Abraham Roth, “Prediction, Entitlement, and Authority in Shared Agency” Nous 48, no. 4 (2014): 626-652 for a recent form of his argument that we must be able to act directly on another’s intentions in order to bear the right sort of relation to that person in a case of shared agency.

207 Table 2: ADENOMA*

Ellen Phoebe Surgical removal X ✓ Medication ✓ X Monitoring hormone levels ✓ X

Imagine that both Ellen and Phoebe have fully discussed all three options, and yet the decision table above still reflects their preferences. Considerations of non-domination create a presumption in favor of deferring to patients in cases of intractable faultless disagreement. But does deferring to the patient in the above scenario require that the doctor give up his authority to reopen deliberation?

It does not. Deference on the shared deliberative standing account is not a matter of overriding the doctor’s authority to reopen deliberation. That is, should Ellen reopen deliberation in the above scenario, she would not be acting outside the bounds of her authority. Nonetheless,

Ellen has the choice not to reopen deliberation. She can instead take up Phoebe’s intention to proceed with surgery; this is not a matter of giving up one’s authority to reopen deliberation, but a matter of declining to exercise her authority to reopen deliberation.

On this account, then, deference is a kind of normative power one has.254 It is a choice to give over one’s decision to the other person. And most importantly, one can have good reason to defer in cases. Doctors and patients both can look at the balance of reasons present in a deliberative context and make judgments about whether it is prudent or good or fair to defer in

254 Andrea Westlund has a nice defense of deference as a normative power, such that acts of deference need not be compromises of agency. Rather, deference is a voluntary transfer of “deliberative discretion”. However, she is focused predominantly on deference as a normative power in cases where one comes under the authority of another, not in cases where the parties share authority over a decision. Andrea Westlund, “Deference as a Normative Power”, Philosophical Studies 166 (2013): 455-474.

208 particular cases. Moreover, outside parties can try and encourage doctors and patients—but doctors especially—to recognize the importance of deference to patients in cases of intractable disagreement, and how it presents a particularly weighty reason to defer to patients in such cases.

Considerations of non-domination, then, can establish, in cases of intractable disagreement, a presumption of deference to the patient.

However, this presumption does not require removing or compromising the doctor’s authority in the decision-making process. The doctor’s deference is a voluntary act, a choice to take up the patient’s decision rather than reopening deliberation. Given this, the doctor can defer in these cases without compromising their standing as a deliberative partner. Thus the shared deliberative standing account can meet the second desideratum; it is compatible with the presumption to defer to patients in cases of intractable disagreement.

One key worry for the account of shared deliberative standing is how it handles an uncooperative patient. Because shared deliberative standing entails not only the authority to reopen deliberation for the other party, but also the authority to settle deliberative questions for the other party, could we not encounter a patient who simply “closes” deliberation every time the doctor tries to reopen it? If so, then it seems like shared deliberative standing faces a worry about the doctor being essentially coerced into deference, in a way that is not dissimilar from the gridlock of the mutual veto model.255

First, in such cases, the scope of such manipulation will be limited to those treatment options that are available in a option set that is responsive to external professional and institutional commitments. Doctors will be under no obligation to defer to requests for medically

255 Thanks to Tristram McPherson for raising this challenge.

209 unacceptable treatments, or for treatments that require an unfair share of resources. Second, the doctor’s role as a patient health advocate will not permit abandonment of the patient; doctors still face duties of care even when dealing with uncooperative patients. So in the case of the uncooperative patient, doctors will ultimately still be expected to defer where the disagreement is faultless—even though it is only “intractable” in the sense that the patient refuses to deliberate.

However, a possible approach to mitigating this problem is to consider whether any institutional recourse is available to the doctor. If deference is due to the patient in cases of intractable disagreement for the sake of minimizing domination, then this must be common knowledge between the doctor and patient. If it is not, then patients will still feel like they are subject to high costs for refusing to cooperate with the doctor’s preferred course of action. But there may be intermediary steps between doctor-patient deliberation and deference that could help address worries about an uncooperative patient. For example, prior to requiring deference, the institution may allow doctors to bring in an ethics consult or a mediator to help facilitate conversation. This institutional mechanism would also be common knowledge between the doctor and the patient.

Such third-party recourse might have two benefits in handling cases of uncooperative patients. First, it may help the doctor make headway in deliberation to determine whether continued deliberation really is prudent. Second, this form of third-party recourse could also disincentivize patients from engaging in this kind of uncooperative behavior, since they will be less easily able to strong-arm a doctor into deferring. If patients know that doctors have some form of institutional recourse should the patient continue to shut down deliberation, they may be less inclined to do so.

210 In sum, the shared deliberative standing account of shared decisional authority captures the importance of both parties being empowered to reopen deliberation. By entering a medical decision-making process, both doctor and patient commit to a shared project in which they both enjoy equal standing to discuss, dissent, and deliberate about the ever-growing options for medical care. The partnership model’s distinctive emphasis on open dialogue in the pursuit of a decision that is mutually satisfactory, then, demands that we move beyond the framework that emerged from the rejection of medical paternalism and that we draw on a new set of conceptual resources for an account of its structure.

V. Meeting the Demands of Partnership

In this chapter, I have defended an alternative way of thinking about decisional authority, one that satisfies the ideals of the partnership model. The partnership model fundamentally envisions medical decision-making as a collaboration between doctor and patient. By shifting our conception of decisional authority away from control over decisions and towards control over deliberation, the partnership model can secure for both parties the authority necessary to fully engage in medical decision-making as deliberative partners.

Having argued for this alternative conception of decisional authority, I conclude by summarizing the accomplishments of this project. The vision of the doctor-patient partnership emerged from the rejection of the paternalistic model of medical decision-making. While the anti-paternalist tradition has uncovered extremely valuable insights into how we should conceive of proper medical decision-making, it is fundamentally limited in its ability to secure a collaboration between doctor and patient. This is made particularly clear when we consider how a commitment to respect the patient’s right of self-determination does not simply ensure patient

211 inclusion in medical decision-making; it places the burden on doctors to show that they are entitled to participate in medical decision-making. Even if it is relatively common for doctors to be able to provide this justification, it is a normative framework that is antithetical to collaboration.

After offering a defense of the importance of doctors retaining some share of decisional authority, I provided a key revision to the normative foundation upon which the doctor-patient partnership sits. Rather than ground the anti-paternalist insights in the commitment to respect the patient’s right of self-determination, I have substituted this commitment for a commitment to minimize domination. By doing so, I have opened up the prospect of allowing doctors to participate fully in medical decision-making without being empowered to exclude or overpower patients in medical decision-making. Finally, achieving this collaborative relationship has required reconsidering the nature of the authority the doctor and patient have with respect to each other in medical decision-making. I have offered an account to decisional authority that provides both doctor and patient the necessary standing with respect to a treatment decision, such that they can be said to share authority over this decision. Through these developments, I have offered a revised normative foundation for the doctor-patient partnership, one that truly does justice to the idea that medical decision-making is a shared project.

212

References

Alonso, Facundo M. “Shared Intention, Reliance, and Interpersonal Obligations”. Ethics 119, no. 3 (April 2009): 444-475.

Anderson, Elizabeth. Private Government: How Employers Rule Our Lives and Why We Don’t Talk About It. Princeton: Princeton University Press, 2017.

Andorno, Roberto. “The Right Not to Know: An Autonomy-Based Approach”. Journal of Medical Ethics 30, no. 5 (October 2004): 435-439.

Arpaly, Nomy. Unprincipled Virtue: An Inquiry into Moral Agency. New York: Oxford University Press, 2003.

Beauchamp Tom L. and James F. Childress. Principles of Biomedical Ethics, 7th ed. New York: Oxford University Press, 2013.

Berlin, Isaiah. “Two Concepts of Liberty”. In Isaiah Berlin: Liberty, ed. Henry Hardy, 166-217. London: Oxford University Press, 2002.

Blumenthal-Barby, J.S. “Seeking Better Health Care Outcomes: The Ethics of Using the Nudge”. American Journal of Bioethics 12, no. 2 (2012): 1-10.

Bratman, Michael. Intentions, Plans, and Practical Reason. Cambridge: Harvard University Press, 1987.

Bratman, Michael. Shared Agency: A Planning Theory of Acting Together. New York: Oxford University Press, 2013.

Bratman, Michael. “Shared Cooperative Activity”. Philosophical Review 101, no. 2 (April 1992): 327-341.

Brock, Dan W. “The Ideal of Shared Decision-Making Between Physicians and Patients”. Kennedy Institute of Ethics Journal 1, no. 1 (1991): 28-47.

Brock, Dan W. and Steven A. Wartman. “When Competent Patients Make Irrational Choices”. The New England Journal of Medicine 322, no. 22 (1990): 1595-1599.

Buchanan, Allen. “Medical Paternalism”. Philosophy and Public Affairs 7, no. 4 (Summer 1978): 370-390.

213 Buchanan, Allen E. and Dan W. Brock. Deciding for Others: The Ethics of Surrogate Decision- Making. Cambridge: Cambridge University Press, 1989.

Carnevale, Anthony, Stephen J. Rose, and Ban Cheah. “The College Payoff: Education, Opportunities, Lifetime Earnings”, (Washington D.C.: The Georgetown University Center on Education and the Workforce, 2011). https://www2.ed.gov/policy/highered/reg/hearulemaking/2011/collegepayoff.pdf. Accessed 8 June 2018.

Charles, Cathy, Amiram Gafni, and Tim Whelan. “Shared Decision-Making in the Medical Encounter: What Does It Mean? (Or it Takes At Least Two to Tango)”. Social Science and Medicine 44, no. 5 (1997): 681-692.

Charles, Cathy, Tim Whelan, and Amiram Gafni. “What Do We Mean by Partnership in Making Decisions About Treatment?”. BMJ: British Medical Journal 319, no. 7212 (September 1999): 780-782.

Childress, James. Who Should Decide? Paternalism in Health Care. New York: Oxford University Press, 1982.

Ciric, Ivan, Ann B. Ragin, Christoph Baumgartner, and Drew Pierce. “Complications of Transsphenoidal Surgery: Results of a National Survey, Review of the Literature, and Personal Experience”. Neurosurgery 40, no. 2 (1997): 225-236.

Chowdhury, Tumul, Hemanshu Prabhakar, Parmod K Bithal, Bernhard Schaller and Hari Hara Dash. “Immediate Postoperative Complications in Transsphenoidal Surgery”, Saudi Journal of Anesthesiology 8, no. 3 (2014): 335-341.

Code of Ethics of the American Medical Association (adopted May, 1847). https://www.bioethicscourse.info/codesite/1847code.pdf. Accessed 30 July 2018.

Conly, Sarah. Against Autonomy: Justifying Coercive Paternalism. New York: Cambridge University Press, 2013.

Costa, M. Victoria. “Freedom-Based Arguments for Informed Consent: The Neo-Republican Alternative”, Journal of Social Philosophy 46, no. 3 (Fall 2015): 357-372.

Council on Medical Service. “Shared Decision-Making”. American Medical Association. 7-A- 10. Chicago: AMA. 2010. https://www.ama-assn.org/sites/default/files/media- browser/public/about-ama/councils/Council%20Reports/council-on-medical-service/a10-cms- shared-decision-making.pdf. Accessed 20 May 2018

214 Daniels, Norman. “The Ideal Advocate and Limited Resources” Theoretical Medicine and Bioethics 8, no. 1 (1987): 69-80.

Darwall, Stephen. The Second-Person Standpoint: Morality, Respect, and Accountability. Cambridge: Harvard University Press, 2006.

Darwall, Stephen. “Authority and Reasons: Exclusionary and Second-Personal”, Ethics 120, no. 2, (2010): 257-278. Davis, Ryan W. “Rational Persuasion, Paternalism, and Respect”, Res Publica 23, no. 4 (November 2017): 513-522. deMarneffe, Peter. “Avoiding Paternalism”. Philosophy and Public Affairs 34, no. 1 (Winter 2006): 68-94.

Dworkin, Gerald. “Autonomy and Informed Consent”. In The Theory and Practice of Autonomy, 100-120. Cambridge: Cambridge University Press, 1988.

Dworkin, Gerald. “The Nature of Autonomy”. In The Theory and Practice of Autonomy, 3-20. Cambridge: Cambridge University Press, 1988.

Dworkin, Gerald. “Paternalism”. The Monist 56, no. 1 (January 1972): 64-84.

Early Breast Cancer Trialists’ Collaborative Group. “Effects of Chemotherapy and Hormonal Therapy for Early Breast Cancer on Recurrence and 15-Year Survival: An Overview of the Randomised Trials.” Lancet 365, no. 9472 (2005): 1687–1717.

Emanuel, Ezekiel J. and Linda L. Emanuel, “Four Models of the Physician-Patient Relationship”, Journal of the American Medical Association 267, no. 16 (April 1992): 2221- 2226.

Enoch, David. “Hypothetical Consent and the Value(s) of Autonomy”. Ethics 128, no. 1 (October 2017): 6-36.

Eyal, Nir. "Informed Consent". The Stanford Encyclopedia of Philosophy. ed. Edward N. Zalta, (Fall 2012). https://plato.stanford.edu/archives/fall2012/entries/informed-consent/. Accessed 12 June 2018.

Faden, Ruth R. and Tom L. Beauchamp. A History and Theory of Informed Consent. Oxford: Oxford University Press, 1986.

Flanigan, Jessica. Pharmaceutical Freedom: Why Patients Have a Right to Self-Medicate. New York: Oxford University Press, 2017.

215 Flanigan, Jessica. “Three Arguments Against Prescription Requirements”, Journal of Medical Ethics 38, no. 10, (2012): 1-8.

Feinberg, Joel. The Moral Limits of the Criminal Law, Vol. 1: Harm to Others. New York: Oxford University Press, 1987.

Feinberg, Joel. The Moral Limits of the Criminal Law, Vol. 3: Harm to Self. New York: Oxford University Press, 1989.

Frankfurt, Harry. “Freedom of the Will and the Concept of a Person”. The Journal of Philosophy 68, no. 1 (January 1971), 5-20.

Fricker, Miranda. Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford University Press, 2007.

Gilbert, Margaret. “Shared Intention and Personal Intentions”. Philosophical Studies: An International Journal for Philosophy in the Analytic Tradition 144, no. 1 (2009): 167-187.

Gilbert, Margaret. “Obligation and Joint Commitment”. Utilitas 11, no. 2 (July 1999): 143-163.

Grill, Kalle. “Antipaternalism as a Filter on Reasons”, In New Perspectives on Paternalism and Health Care, ed. Thomas Schramme, 47-62. London: Springer, 2015.

Groll, Daniel. “Medical Paternalism—Part 1”. Philosophy Compass 9, no. 3 (2014): 186-193.

Groll, Daniel. “Medical Paternalism—Part 2”. Philosophy Compass 9, no. 3, (2014): 194-203.

Groll, Daniel. “Medicine and Well-Being”. In The Routledge Handbook of Philosophy of Well- Being, ed. Guy Fletcher, 504-516. London: Routledge, 2016.

Groll, Daniel. “Paternalism, Respect, and the Will”. Ethics 122, no. 4 (July 2012): 692-720.

Hall, Mark. “Review of Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge by Robert Veatch”. New England Journal of Medicine 359 (2008): 2851-2852.

Honoré, A.M. “Ownership”. In Oxford Essays in Jurisprudence, ed. Anthony G. Guest, 107-147. Oxford: Oxford University Press, 1961.

Huddle, Thomas. “Putting Patient Autonomy in its Place; Professional Norm-Guided Decision- Making”. Kennedy Institute of Ethics Journal 26, no. 4 (2016): 457-482.

Jecker, Nancy. “Integrating Medical Ethics with Normative Theory: Patient Advocacy and Social Responsibility”. Theoretical Medicine 11 (1990): 139-150.

216 Jonsen, Albert and Andrew L. Jameton. “Social and Political Responsibilities of Physicians”. The Journal of Medicine and Philosophy 2, no. 4 (1977): 376-400.

Katz, Jay. The Silent World of Doctor and Patient. Baltimore: Johns Hopkins University Press, 1984.

King, Tari A., Rita Sakr, Sujata Patil, Inga Gurevich, Michelle Stempel, Michelle Sampson and Monica Morrow. “Clinical Management Factors Contribute to the Decision for Contralateral Prophylactic Mastectomy”. Journal of Clinical Oncology 29, no. 16 (2011): 2158-2164.

Konold, Donald E. A History of American Medical Ethics 1847-1912. New York: Department of History at the University of Wisconsin, 1962.

Kurian Allison W., Daphne Y. Lichtensztajn, Theresa H. M. Keegan, David O. Nelson, Christina A. Clarke and Scarlett L. Gomez. “Use of and Mortality After Bilateral Mastectomy Compared With Other Surgical Treatments for Breast Cancer in California, 1998-2011”. Journal of the American Medical Association 312, no. 9 (September 2014): 902-914.

Levy, Neil. “Forced to Be Free? Increasing Patient Autonomy by Constraining It”. Journal of Medical Ethics (2012): 5-8.

“Licensure in Homeopathy”. National Center for Homeopathy. http://www.homeopathycenter.org/practicing-homeopathy. Accessed April 25, 2018.

Lin, Eden. “Monism and Pluralism”. In The Routledge Handbook of the Philosophy of Well- Being, ed. Guy Fletcher, 331-341. London: Routledge, 2016.

Lovett, Frank. A General Theory of Domination and Justice. Oxford: Oxford University Press, 2010.

Making Health Care Decisions: A Report on the Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship, Volume One: Report. Prepared by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Washington, D.C., October 1982.

Makoul, Gregory and Marla L. Clayman. “An Integrative Model of Shared Decision-Making in Medical Encounters”. Patient Education and Counseling 60 (2005): 301-312.

Manson, Neil C. and Onora O’Neill. Rethinking Informed Consent in Bioethics. Cambridge: Cambridge University Press, 2007.

McCammon, Christopher. “Domination: A Rethinking”. Ethics 125, no. 4 (July 2015): 1028- 1052.

217 McCullough, Laurence B. “Was Bioethics Founded on Historical and Conceptual Mistakes About Medical Paternalism?” Bioethics 25, no. 2 (February 2011): 66-74.

McCutcheon, Ian E. “Pituitary Tumors in Women”. Pituitary Network Association. https://pituitary.org/medical-resources/pavilions/women-s-health/women-s-health- archive/pituitary-tumors-in-women. Accessed 10 June 2018.

Metcalfe. KA. "Prophylactic Bilateral Mastectomy for Breast Cancer Prevention". Journal of Women's Health 13 no. 7, (2004): 822-829.

Montgomery, Kathryn. How Doctors Think: Clinical Judgment and the Practice of Medicine. New York: Oxford University Press, 2006.

Nuland, Sherwin B. “Autonomy Amuck”, The New Republic. 1 July 2009. https://newrepublic.com/article/62808/autonomy-amuck. Accessed 15 May 2018.

O’Neill, Onora. Autonomy and Trust in Bioethics. Cambridge: Cambridge University Press, 2003.

O’Neill, Onora. “Consistency in Action” in Constructions of Reason: Exploring Kant’s Practical Philosophy, 81-104. Cambridge: Cambridge University Press, 1989.

Pellegrino, Edmund D. “The Internal Morality of Clinical Medicine: A Paradigm for the Ethics of the Helping and Healing Professions”, Journal of Medicine and Philosophy 26, no. 6 (2001): 559-579.

Pettit, Philip. “Freedom as Antipower”. Ethics 106, no. 3 (April 1996): 576-604.

Pettit, Philip. On the People’s Terms: A Republican Theory and Model of Democracy. Cambridge: Cambridge University Press, 2012.

Pettit, Philip. Republicanism: A Theory of Freedom and Government. Oxford: Oxford University Press, 1999.

Pettit, Philip. “Three Axioms, Four Theorems”. In Republicanism and Political Theory, eds. Cécile Laborde and John Maynor, 102-130. Oxford: Blackwell Publishing, 2008.

Quill, Timothy E. and Howard Brody, “Physician Recommendations and Patient Autonomy: Finding a Balance between Physician Power and Patient Choice”. Annals of Internal Medicine 125 (1996): 763-769.

Raz, Joseph. Practical Reasons and Norms, 3rd ed. New York: Oxford, 1999.

Raz, Joseph. The Morality of Freedom. Oxford: Clarendon Press, 1986.

218 “Recovering from Brain Surgery for a Pituitary Adenoma”, uploaded by NidiBeats, 23 January 2017, https://www.youtube.com/watch?v=bt3Ii5c6GMw. Accessed 17 June 2018.

Roberts, Rachel. “Homeopathic Remedies are ‘Nonsense and Risk Significant Harm’ say 29 European Scientific Bodies”, The Independent, 23 September 2017. https://www.independent.co.uk/news/uk/home-news/homeopathy-nonsense-risk-harm-29- european-academies-science-advisory-council-remedies-a7963786.html. Accessed 25 April 2018.

Roth, Abraham. “Practical Intersubjectivity”. In Socializing Metaphysics: The Nature of Social Reality, ed. F. Schmitt, 65-91. Lanham: Rowman and Littlefield, 2003.

Roth, Abraham. “Prediction, Entitlement, and Authority in Shared Agency”. Nous 48, no. 4 (2014): 626-652.

Sandman, Lars and Christian Munthe. “Shared Decision-Making, Paternalism, and Patient Choice”. Health Care Analysis 18, no. 1 (2010): 60-84.

Savulescu, Julian. “Autonomy, The Good Life, and Controversial Choices”. In The Blackwell Guide to Medical Ethics, eds. Rosamond Rhodes, Leslie P. Francis, and Anita Silvers, 17-37. Oxford: Blackwell Publishing, 1997.

Savulescu, Julian. “Liberal Rationalism and Medical Decision-Making”. Bioethics 11, no. 2 (1997): 115-129.

Savulescu, Julian. “Rational Non-Interventional Paternalism: Why Doctors Ought to Make Judgments about What is Best for Their Patients”. Journal of Medical Ethics 21, no. 6 (December 1995): 327-331.

Savulescu, Julian. “The Proper Place of Values”. American Journal of Bioethics 7, no. 12 (2007): 21-22.

Savulescu, Julian and Richard W. Momeyer. “Should Informed Consent Be Based on Rational Beliefs?”. Journal of Medical Ethics 23, no. 5 (October 1997): 282-288.

Schloendorff v. Society of New York Hospitals, 211 N.Y. 125, 126, 105 N.E. 92, 93 (1914)

Shiffrin, Seana Valentine. “Paternalism, Unconscionability Doctrine, and Accommodation”. Philosophy and Public Affairs 29, no. 3 (Summer 2000): 205-250.

Skinner, Quentin. “Freedom as the Absence of Arbitrary Power”. In Republicanism and Political Theory, eds. Cécile Laborde and John Maynor, 83-101. Oxford: Blackwell Publishing, 2008.

219 Stahl, Ronit and Ezekiel Emanuel. “Physicians, Not Conscripts—Conscientious Objection in Health Care”. New England Journal of Medicine 376, no. 14 (2017): 1380-1385.

Thaler Richard W. and Cass R. Sunstein. Nudge: Improving Decisions about Health, Wealth, and Happiness. New York: Penguin Books, 2008.

Thomson, Judith Jarvis. “A Defense of Abortion”. Philosophy and Public Affairs 1, no. 1 (Autumn 1971): 47-66.

Tsai, George. “Rational Persuasion as Paternalism”. Philosophy and Public Affairs 42, no. 1 (Winter 2014): 78-112.

Veatch, Robert. “Models for Ethical Medicine in a Revolutionary Age”. Hastings Center Report 2, no. 3 (June 1972): 5-7.

Veatch, Robert. Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge. Oxford: Oxford University Press, 2009.

Veatch, Robert. “The Principles for Medical Ethics”. In The Patient-Physician Relation: The Patient as Partner, Part 2. Bloomington: Indiana University Press, 1991.

Veatch, Robert. “The Physician as Stranger: The Ethics of the Anonymous Patient-Physician Relationship”. In The Patient-Physician Relation: The Patient as Partner, Part 2. Bloomington: Indiana University Press, 1991.

Velleman, David. “How to Share an Intention”. Philosophy and Phenomenological Research 57, no. 1 (1997): 29-50.

Westlund, Andrea. “Deference as a Normative Power”. Philosophical Studies 166 (2013): 455- 474.

Wynn, Rolf, Lars-Henrik Myklebust and Trond Bratlid. “Psychologists and Coercion: Decisions Regarding Involuntary Psychiatric Admission and Treatment in a Group of Norwegian Psychologists”. Nordic Journal of Psychiatry 61, no. 6, (2007): 433-437.

Zacharak, Stephanie, Eliana Dockterman and Haley Sweetland Edwards. “TIME Person of the Year 2017--The Silence Breakers”. 18 December 2017. http://time.com/time-person-of-the-year- 2017-silence-breakers/. Accessed 30 May 2018.

220