Initial Keynotes October 14

Clinical Aspects of VSED – Timothy Quill

Objectives: 1) Understand two the clinical contexts where VSED becomes a relevant clinical question. 2) Identify clinical differences and similarities between VSED and other “last resort” options (including intensive symptom management, stopping life sustaining therapies, palliative sedation to unconsciousness, physician assisted death and voluntary active euthanasia) 3) Name two potential clinical challenges in evaluating patients for VSED in the future, and two potential clinical challenges carrying out VSED once started

Legal Aspects of VSED – Thaddeus Pope

Objectives: (1) Describe four legal foundations of a patient’s right to contemporaneous VSED (2) Understand the challenges and risks for families and clinicians in implementing an advance VSED decision for a now incapacitated patient (3) Compare the legal distinctions between VSED, on the one hand, and medical aid in dying and withholding or withdrawing life-sustaining treatments, on the other hand

Ethical Aspects of VSED – Robert Truog

Objectives: 1) Compare and contrast the ethical challenges of VSED in relation to other end-of-life practices, such as withdrawal of life support, physician aid-in-dying, and euthanasia. 2) Understand the arguments around whether VSED should be considered suicide, and the implications that follow for physicians who care for patients who choose VSED. 3) Review key ethical distinctions in the practice of VSED between patients who have decisional capacity and those who lack this capacity.

Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 68 The Journal of Clinical Ethics Spring 2014

Thaddeus Mason Pope and Amanda West, “Legal Briefing: Voluntarily Stopping Eating and Drinking,” The Journal of Clinical Ethics 25, no. 1 (Spring 2014): 68-80.

Law

Legal Briefing: Voluntarily Stopping Eating and Drinking

Thaddeus Mason Pope and Amanda West

ABSTRACT 6. Judicial Guidance from Canada 7. Case of Margot Bentley This issue’s “Legal Briefing” column covers recent legal de- velopments involving voluntarily stopping eating and drinking 1. Definition of VSED (VSED). Over the past decade, clinicians and bioethicists have What Is VSED? Voluntary stopping eating and increasingly recognized VSED as a medically and ethically appro- drinking (VSED) refers to a conscious and deliber- priate means to hasten death.1 Most recently, in September 2013, ate decision, by a capacitated patient suffering from the National Hospice and Palliative Care Organization (NHPCO) advanced illness or an extremely debilitating medi- called on its 2,000 member hospices to develop policies and guide- cal condition, to intentionally refrain from receiv- lines addressing VSED.2 And VSED is getting more attention not ing food or fluids by mouth, with the purpose of only in healthcare communities, but also in the general public. For hastening death. VSED has been variously referred example, VSED was recently highlighted on the front page of the to by several other names, including: (a) voluntary New York Times and in other national and local media.3 Neverthe- refusal of food and fluids (VRFF), (b) voluntary ter- less, despite the growing interest in VSED, there remains little on- minal dehydration, (c) voluntary death by dehydra- point legal authority and only sparse bioethics literature analyzing tion, (d) terminal dehydration, (e) stopping eating its legality. This article aims to fill this gap. Specifically, we focus on and drinking, (f) patient’s refusal of hydration and new legislative, regulatory, and judicial acts that clarify the permis- nutrition, and (g) indirect self-destructive behavior.4 sibility of VSED. We categorize these legal developments into the As with many concepts in bioethics, not all of these following seven categories: parallel phrases are normatively neutral. Most re- 1. Definition of VSED cently, Julian Savulescu referred to it as voluntary 2. Uncertainty Whether Oral Nutrition and Hydration Are Medi- palliated starvation.5 In order to qualify as VSED, a cal Treatment decision to stop eating and drinking must be fully 3. Uncertainty Regarding Providers’ Obligations to Patients Who autonomous and self-directed, but medical support Choose VSED is often required, such as mouth care and palliative 4. Judicial Guidance from Australia measures.6 5. Judicial Guidance from the United Kingdom Individuals choose VSED for various reasons. Some patients are motivated by physical factors such Thaddeus Mason Pope, JD, PhD, is Director of the Health Law as debility, weakness, and pain. Other patients have Institute, Hamline University School of Law, Saint Paul, Minne- emotional reasons such as: (a) weariness with the sota, [email protected]. dying process, (b) desire to control the circumstances Amanda West is a Fourth-Year Student at the Hamline University of death, (c) feeling that quality of life is poor, (d) School of Law, an Editorial Board member for the Hamline Journal desire to die at home, and (e) feeling that life lacks of Public Law and Policy, and a Legal Extern at the U.S. Attorney’s meaning.7 Individual patients usually experience a Office for the District of Minnesota. combination of these and other factors.8 While some ©2014 by The Journal of Clinical Ethics. All rights reserved. people equate VSED with suicide, patients who Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. Volume 25, Number 1 The Journal of Clinical Ethics 69

choose it often see it as more akin to refusing or dis- cian. That is, while supportive measures and pallia- continuing life-sustaining therapy.9 tive care are often necessary to achieve a “good It is important, at the outset, to make clear what death” by VSED, physicians do not have to prescribe VSED is not. It is distinguishable from the natural lethal medication or otherwise actively hasten a process whereby people in the final days or weeks patient’s death. Since the legality of AID remains of life lose interest in food or become unable to tol- undetermined in 45 states, VSED is an increasingly erate it physically. It also does not apply to indi- attractive choice.17 viduals who are unable to take nourishment by Not only are there fewer barriers to accessing mouth with or without assistance and who are de- VSED, there are fewer functional requirements for pendent on artificial methods of nutrition and hy- patients. For example, VSED does not require the dration. Finally, as the word “voluntary” indicates, ability to swallow a pill or slurry (a mixture of pow- it does not refer to the withholding of food or liq- dered barbiturate and water). Moreover, because a uids from a capacitated person who actively desires patient can be expected to live for days or weeks food and drink. after stopping eating and drinking, there is more time Who Chooses VSED? Via public referenda in to say good-bye to loved ones, put one’s affairs in 1994 and 1997, Oregon became the first state to es- order, and, potentially, change one’s mind. tablish a right to aid in dying (AID). With AID, a For these reasons, the Royal Dutch Medical As- physician writes a prescription for a life-ending sociation (KNMG) recently issued guidelines that ac- medication for a terminally ill, mentally capacitated cept VSED as a humane way to die: “A patient with adult. One survey of hospice nurses in Oregon indi- a strong wish to die may decide for himself to deny cates that patients who chose VSED, relative to those food and drink. In that case, the patient is making a who chose AID, were an average of almost 10 years conscious choice to hasten death. Studies . . . show older, less likely to have cancer, and more likely to that the conscious denial of food and drink, when suffer from neurological disease.10 From a social and combined with effective palliative care, can offer a emotional standpoint, patients who chose VSED dignified death. The KNMG endorses this view.” Fur- were statistically less likely to be very concerned thermore, these guidelines do not recognize VSED with controlling the circumstance of their death, less as assisted suicide, but rather more akin to a refusal likely to be preoccupied with an impending loss of of life-prolonging treatment: “When a patient dies dignity, more prepared to die, and more likely to due to not eating and drinking this constitutes a lack social support. (But nearly 90 percent of respon- natural death.”18 dents reported that the families of most or all of the Notably, the KNMG guidelines clarify that pa- patients who chose VSED accepted the patient’s tients who choose VSED have a right to appropriate choice.11) care from their physician. Physicians must “provide How Does VSED Hasten Death? Once the deci- the patient with reliable information, preparing him sion to VSED has been implemented, most patients for the process, supervise him and alleviate suffer- live for seven to 14 days. Precisely how long a par- ing, including if complications arise.” The guide- ticular patient lives is typically related to his or her lines require that the physician act as a good care- physical condition at the start of the fast.12 Feelings provider, even if the physician does not agree with of hunger and thirst usually subside after the first the patient’s decision. The objective is that the phy- day or two and can generally be controlled through sician “alleviates the suffering as much as possible mouth care, such as chewing on ice chips or swal- and is accessible and available to the patient.” lowing very small amounts of water.13 The process What Are the Criticisms of VSED? VSED is not can cause delirium or anxiety toward the end of life, without critics, however.19 Some object to it on the but also euphoria and tranquility.14 Hospice nurses grounds that they consider it suicide.20 Of course, in the aforementioned Oregon study reported that this is also the case for far more common palliative VSED patients suffered less and were more at peace treatments. Actions such as stopping dialysis or stop- in their last weeks than patients who opted for AID.15 ping clinically assisted nutrition and hydration are What Are the Advantages of VSED? In addition frequently characterized as being euthanasia, mur- to typically being a peaceful way to die, VSED has der, or killing.21 Some dispute the claim that VSED other advantages.16 It offers the same protections for is a peaceful way to die.22 Others argue that it deval- autonomy, bodily integrity, and self-determination ues the lives of individuals with disabilities (or im- as other end-of-life options such as AID or refusal/ pairments, as some prefer) by suggesting that loss of cessation of mechanical life-sustaining interven- function or ability makes people seem to be less valu- tions. But in contrast to those mechanisms, VSED able or even expendable.23 Such critics are particu- does not require the overt participation of a physi- larly concerned that VSED may be used as a “cover” Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 70 The Journal of Clinical Ethics Spring 2014 for family members or caregivers who want to starve III, discuss an unpublished trial court opinion from an elderly individual to make it look as though this 1987 that specifically upheld the right of a woman was the patient’s choice. in her 80s to voluntarily stop eating and drinking Other commentators are not opposed to VSED, based on the “right of an adult to determine what but call for more research.24 One recent meta-review can be done to his or her own body.” In support of concluded that “VSED has hardly been examined this holding, the court cites cases dealing with re- in the past 20 years.” The authors describe the avail- fusal of medical treatment.30 able articles as “heterogenous and inconclusive,” More recently, in 2007, a Georgia court held that representing a “patchwork rather than a picture.”25 the executor of a woman who died from aspirating Indeed, VSED has been under-examined compared scrambled eggs that she was spoon fed in the hospi- to other end-of-life options. tal while recovering from hip surgery could not re- cover for medical battery, because the spoon feed- 2. Uncertainty Whether Oral Nutrition ing was part of the “treatment” to which the patient and Hydration Are Medical Treatment had consented when she signed a general consent While many leading commentators have con- form upon admission to the hospital.31 While the cluded that VSED is legal, the relative absence of plaintiff failed to recover damages for the unwanted explicit authoritative confirmation has left many feeding, it was because the court treated food and healthcare providers uncertain. Two of the most sig- fluids as “treatment” that had been accepted under nificant unanswered questions are the following: (a) the patient’s general consent. Do orally ingested food and fluids constitute medi- On the other hand, some cases and commenta- cal treatment? (b) What are healthcare providers’ tors draw a sharp distinction between oral or “natu- obligations to patients who choose VSED? We ad- ral” feeding—even when it is assisted—and artifi- dress the first question in this section and the sec- cial delivery methods such as a nasogastric (NG) ond question in the next section. tube, percutaneous endoscopic gastrostomy (PEG) The right to refuse life-sustaining medical treat- tube, or intravenous infusion. They argue that the ment is well established in the American legal sys- former constitutes basic or ordinary care, as opposed tem.26 This right derives from constitutional privacy to medical treatment.32 Moreover, some state stat- protections and individual state laws, but also from utes have specifically included language to distin- the legal principle that any intentional, unwanted guish assisted oral feeding from artificial nutrition touching constitutes battery.27 In the medical con- and hydration.33 text, even procedures carried out for harmless, be- Ultimately, it may not materially impact the le- nevolent, or beneficial purposes may constitute bat- gal analysis whether oral nutrition and hydration tery if the provider knows, or should have known, are medical treatment or not. Even if VSED does not that they would be offensive to the particular pa- constitute the refusal of life-sustaining medical treat- tient.28 Case law across jurisdictions supports the ment, providers have, at best, limited options for proposition that the artificial provision of nutrition overcoming a competent patient’s decision to stop and hydration constitutes medical treatment that eating and drinking. Force feeding a patient or initi- may legally be refused or discontinued either by a ating artificial nutrition and hydration over a pati- competent patient or through a proper surrogate.29 ent’s refusal would, as the foregoing discussion dem- What is less clear, however, is whether the pro- onstrates, be legally impermissible. As the follow- vision of oral nutrition and hydration constitutes ing section discusses, however, healthcare provid- medical treatment. It could be argued that any in- ers and others have additional means at their dis- tervention performed upon an individual in a health- posal to try to “leverage” consent to unwanted nour- care setting by healthcare employees for the purpose ishment.34 of sustaining life can be considered “treatment,” at least for the purposes of determining whether a pa- 3. Uncertainty Regarding Providers’ tient has the right to refuse it. Moreover, spoon feed- Obligations to Patients Who Choose VSED ing requires inserting a foreign object into the mouth There is little on-point legal authority confirm- of a patient. If the patient resists and the feeder must ing the legality of VSED. Consequently, many care- resort to force to accomplish the task, this contact providers remain uncertain whether they may sup- could potentially be classified as unwanted touch- port or allow their patients and residents to VSED. ing under the legal definition of battery. Unsure about their duties with respect to VSED, At least two U.S. cases suggest that oral nutri- many providers err in favor of preserving life. Per- tion and hydration are medical treatment. First, Pro- haps no case better illustrates this than that of fessors Norman L. Cantor and George C. Thomas, Armond and Dorothy Rudolph. The Rudolphs’ story Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. Volume 25, Number 1 The Journal of Clinical Ethics 71

made national headlines in 2011, when their assisted day. The legality of healthcare practitioners support- living facility in New Mexico tried to evict them ing a patient’s decision to forego nourishment and based on their decision to VSED. Coincidentally, hydration by providing palliative care and comfort New Mexico, more recently, became the fifth state measures remains a contentious issue that has never to legalize aid in dying.35 been adequately addressed by American courts. The Case of the Rudolphs. The Rudolphs were Responding to the Rudolph case, Karl Polzer, senior an elderly couple with multiple health impairments. policy director for the National Center for Assisted Mr. Rudolph was 92 years old and suffered from spi- Living, said, “This is the first time we’ve heard of a nal stenosis. Mrs. Rudolph was 90 years old and had situation like this. . . . It is important that assisted lost a great deal of her mobility after a broken hip. living communities have the right to choose wheth- They both exhibited signs of early dementia. Both er this type of course of action is consistent with Mr. and Mrs. Rudolph had long been committed to their philosophy and values.”37 the idea that they did not want a prolonged death Furthermore, the case of Armond and Dorothy with a loss of independence. They had communi- Rudolph illustrates not only the uncertainty and le- cated their end-of-life wishes to their children and gal risk averseness of healthcare providers. It also had completed advance directives (ADs) stating that illustrates a significant reason that American courts they did not wish to receive life-sustaining treatment have provided so little guidance on this subject. for terminal illnesses with no reasonable hope for People choosing VSED at the end of life are unlikely recovery. to live long enough to see a legal action through the In early 2011, the Rudolphs decided that the time usually lengthy litigation process.38 had come for them to end their lives. So they com- The Case of A.B. v. C. On the other hand, indi- menced their plan to stop eating and drinking.36 viduals seeking to establish their rights to VSED Their son told the New York Times that this deci- before they are ready to forego nutrition and hydra- sion was carefully considered and not the result of tion will likely face another unique set of legal ob- depression on his parents’ part. He helped them draft stacles. For example, in the 1984 case A.B. v. C., a a statement memorializing their intention and in- 54-year-old woman had been rendered quadriple- formed administrators at the Village at Alameda, the gic by a fall. A.B. was unable to move her arms or Rudolphs’ assisted living facility, of his parents’ legs, and therefore she was unable to feed herself.39 decision. She was, however, alert and competent to make de- The family was stunned when the administra- cisions on her own behalf.40 tion responded by informing them that Mr. and Mrs. A.B. required frequent hospitalization due to Rudolph would have to move out by the next day, recurrent infections and she wished to forego any especially since the contract the Rudolphs had additional medical treatment beyond the life sup- signed with the Village required 30 days’ notice. The port equipment already in place and any medica- following day, the New York Times reported, some- tion needed to control her pain.41 Also, she wished one in the facility’s administration placed a 911 call “to take only whatever nourishment she [chose], to report that the Rudolphs were attempting suicide even to the extent of taking none at all.” When A.B. and needed to be taken to a hospital. The paramed- communicated her wishes to her doctor, however, ics who responded to the call, confused by what they he informed her that he considered himself ethically found when they arrived on the scene, asked the bound to provide treatment under such circum- University of New Mexico Emergency Medicine De- stances. He would, therefore, be unable to comply partment for advice. The doctor who took their call with her wishes. So, A.B. formally ended her treat- drove to the Village to speak with Mr. and Mrs. ment relationship with her physician. Next, A.B. Rudolph at their bedsides, and concluded that nei- sought legal orders to be certain that the hospital or ther needed to go to a hospital, as both “were able to other providers would not be able to force unwanted very appropriately and eloquently explain their treatment or nourishment upon her, if and when she wishes and what they wanted to have done.” entered their care.42 Specifically, she petitioned a The Rudolphs did move out of the assisted liv- New York state trial court both for an order recog- ing facility and into a rented house where they spent nizing her right to refuse “medical care, treatment their final days being cared for by family members and nourishment” and for an order requiring her and hospice professionals. Armond Rudolph died healthcare providers to comply with her AD if she 10 days after he stopped eating and drinking, and required hospitalization and/or lost the capacity to Dorothy Rudolph died the following day. advocate for herself.43 The Rudolphs’ situation highlights an important But the New York court refused to grant A.B.’s area of uncertainty regarding VSED in the U.S. to- request due to the hypothetical nature of the relief Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 72 The Journal of Clinical Ethics Spring 2014 she sought. The court explained that it was “sympa- his request. They kept the lines of communication thetic with petitioner’s plight and would honor her open with Dr. S and continually reinforced the vol- request if it arose within the context of an actual untary nature of his fast. While much is needed in and real controversy.”44 But since A.B. was not hos- terms of legal clarification and protection for patients pitalized and no controversy had yet arisen over her who choose to forego oral nutrition and hydration treatment, the court held that the orders she re- and the professionals who care for them, this case quested were beyond its jurisdiction.45 U.S. courts demonstrates that open and honest communication normally do not adjudicate claims that are not “ripe,” remains a critical factor. that rest upon contingent future events that may not occur as anticipated, or may not occur at all. For 4. Judicial Guidance from Australia example, this was a fatal problem with early chal- Although U.S. case law clarifying the legal sta- lenges to advance-directive laws that included tus of VSED is lacking, such cases have arisen in clauses that restricted following an AD when a Australia, the United Kingdom, and Canada. These woman was pregnant; because the plaintiffs were cases may be instructive to providers in the U.S. who not (yet) pregnant, terminally ill, or incapacitated.46 are considering the legal questions raised by VSED. NHPCO Case of Dr. S. A September 2013 case In 2010, the Supreme Court of South Australia study published by the National Hospice and Pal- issued a ruling in the case of H Ltd v. J & ANOR.51 J liative Care Organization (NHPCO) looked at this was a 74-year-old woman suffering from post-polio problem through the case of Dr. S, a 58-year-old re- syndrome52 and type 1 diabetes.53 Her condition had tired gynecologist suffering from amyotrophic lat- deteriorated such that she no longer had use of her eral sclerosis.47 Dr. S was unable to use his upper right side. What movements she was capable of were extremities or walk more than 10 to 15 feet without limited and painful, and she was completely reliant assistance. He decided to forego all nutrition and on others for all of her basic needs. hydration, and most of his pain medication, in the In January 2010, J wrote to H Ltd, the aged care interests of “hastening his death.”48 facility in whose high-care unit she resided, and in- Members of the hospice ethics committee formed it that she no longer wished to eat, drink, or struggled to reconcile the idea that their mission was take insulin. J cited a “despair which she could no to allow their patients to “die on their own terms” longer endure.”54 She requested no foods and only with the belief that hospice care should not be about fluids in quantities necessary for mouth care and hastening death.49 Dr. S ultimately did move forward comfort.55 Two months later, she executed an antici- with his fast, and the hospice chose a sort of middle patory direction ordering medical staff not to pro- path by regularly and consistently offering him food vide nutrition and hydration and specifying that she and fluids, but leaving the choice of whether to in- wished to receive only palliative care if she became gest them up to him.50 unable to communicate her wishes.56 She named her Dr. S’s caregivers were troubled, however, be- children as her enduring guardians who would have cause, by the 18th day of his fast, Dr. S became frus- the power to make treatment decisions on her be- trated, angry, and depressed that the process was half and she communicated her wishes regarding taking so long. His children were saddened when nutrition and hydration to them.57 he made references to having “no reason to live” in H Ltd initiated legal proceedings seeking clari- their presence. He would frequently say to the nurs- fication of its rights and responsibilities, specifically ing staff, “I’ll give you $100 for a Coke.” His care- its potential legal exposure if it complied with J’s providers responded to Dr. S’s requests for a Coke request.58 Unlike the U.S. court in A.B. v. C., the by assuring him that he could have one if that really Australian court determined that the case presented was what he wanted. In short, Dr. S’s choice to stop a matter properly before the court.59 Unlike A.B., J eating and drinking was presented as fully volun- was already a resident of H Ltd and she was actively tary and autonomous. asserting her rights at the time of the legal action. The NHPCO case study’s emphasis on the expe- Moreover, H Ltd had a substantial and immediate riences of careproviders and family members high- interest in the outcome of the proceedings. The lights a fundamental issue: although VSED is inher- court’s opinion would give it greater legal certainty ently tied to the concepts of bodily integrity and as it provided care for J, gave instructions to its em- autonomy, an individual patient’s decisions are ployees, and offered explanations of the situation never made in a vacuum. Dr. S’s careproviders took to residents and the public in case of a public con- time to think through their beliefs about VSED and troversy.60 So as to give H Ltd the widest latitude to their obligations as careproviders; they also dis- rely on its decision, the court framed its opinion in cussed his case thoroughly before deciding to honor terms of a “proper construction of the relevant laws,” Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. Volume 25, Number 1 The Journal of Clinical Ethics 73

as opposed to specific instructions for actions that 5. Judicial Guidance from the United Kingdom H Ltd should take.61 While the British courts have not offered as com- The court first established that Australian law prehensive a judgment as South Australia, they have included no common law duty to provide nutrition provided some guidance. Monica Cooke was a and hydration to a competent adult who refused it.62 former magistrate who had suffered from multiple Experts had established J’s competence and that she sclerosis (MS) for 20 years. By 2012, she had pro- was not depressed.63 The court then examined the gressively lost her ability to move, taste, and smell. question of whether J’s plan constituted suicide and Cooke had closely followed the case of Tony Nick- concluded that it did not.64 In doing so, the court linson, who had unsuccessfully fought to legalize “accept[ed] the distinction . . . between suicide and assisted dying.74 After losing before the High Court an individual merely speeding “the natural and in- of Justice in August 2012, Nicklinson began to VSED evitable part of life known as death” by refusing food and died six days later.75 Following Nicklinson’s and water.65 Furthermore, the court found there was path, Cooke also decided to VSED at the end of Au- no common law duty to feed oneself and there was gust. She died eight days later, on 7 September a generally accepted legal right to refuse life-sus- 2012.76 taining treatment.66 While not specifically catego- In October 2012, the West Somerset Coroner rizing orally ingested food as medical treatment, the convened an inquest. Cooke’s husband testified that court minimized the difference between food and she made the decision in a “controlled and rational medicine. “There is also a difference between the way.” Cooke wanted to “end her life when she chose. taking of food by natural means and the medical She balanced the ordeal she would suffer and the administration of nutrition. However, those differ- pain she knew she would cause her family against ences do not appear . . . to be sufficient to sustain a her future prospects of minimal independence and distinction between suicide and the exercise of the negligible dignity.” right to self-determination.”67 The coroner found that “there is no dispute in In the final section of its opinion, the court ex- my mind that her death was brought about some- amined J’s anticipatory direction under particular what prematurely by refusing food.” But he refused statutory provisions. Looking at the criminal neglect to issue a verdict of suicide, and instead adopted a statute, it opined that the direction would consti- narrative verdict. The coroner was impressed with tute a “lawful excuse not to provide her with suste- the “very clear details of the debilitating effects of nance” and that a duty of care to a vulnerable adult this illness, how a very sound person, mentally and does not extend to overcoming that person’s resis- physically, was reduced to a person whose quality tance.68 Likewise, the court found no justification of life was very poor.” He gave the causes of death for unwanted feeding under the Aged Care Act as starvation and MS. 1997.69 This act lays out providers’ responsibilities to provide meals, hygiene, emotional support, pal- 6. Judicial Guidance from Canada liative care, and comfort care; its stated purposes Perhaps the most guidance on the legality of include “the provision of funding for aged care and VSED is from Canada, where the courts have adju- the promotion of high quality care and accommo- dicated three cases. We describe two in this section. dation for the aged.”70 The court concluded that it Because of its significance, we separately analyze was contrary to the principles of autonomy and in- the case of Margot Bentley in the next section. dependence embodied in the act to hold that a high Manoir de la Pointe Bleue v. Corbeil. In 1992, a care facility’s duty to feed its residents extends to Canadian quadriplegic nursing home resident sought those who lawfully and rationally choose not to eat.71 to both refuse medical treatment and to stop eating The South Australian court was careful to point and drinking.77 The resident, Mr. Corbeil, was a 35- out that H Ltd’s duties would be re-animated imme- year-old man who was paralyzed below his shoul- diately upon revocation of J’s direction or upon H ders following an all-terrain vehicle accident. The Ltd’s having reasonable grounds to believe the di- care facility brought an application for a declara- rection was no longer in force.72 Finally, under the tion that it was required to respect his wishes. Al- Guardianship and Administration Act 1993, if J be- though it is unclear precisely how Corbeil was as- came incapacitated, her enduring guardians would sisted with feeding, he was not attached to any de- have the power to make all the same decisions that vice, and was fed manually with help from facility J would have made while she had capacity. In fact, employees. J’s children would be required to make medical The Superior Court of Quebec found Mr. Corbeil choices that were consistent with “any specified to be mentally capable of making treatment and care conditions of [their] appointment.”73 decisions. It ordered the nursing home to honor his Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 74 The Journal of Clinical Ethics Spring 2014 wishes on the grounds that he could not be com- In 1999, Mrs. Bentley was diagnosed with Al- pelled to eat or drink any more than he could be zheimer’s disease and she told her family numerous compelled to undergo interventions such as chemo- times that she wished to be allowed to die when she therapy or dialysis.78 The court held that the staff at reached a stage of advanced dementia. She repeat- the care facility had no obligation and no right to edly said her Statement of Wishes would legally provide food and liquids to Mr. Corbeil while he permit that.86 By 2005, Mrs. Bentley’s condition had expressly refused consent for assisted feeding. deteriorated to the point that she needed to be moved Attorney General v. Astaforoff. An earlier Cana- to a residential care facility. After her original care dian VSED case had been adjudicated by the British facility closed, she was moved to Maplewood House, Columbia Court of Appeal, also in favor of the fast- a community care facility licensed by Fraser Health ing individual. Mary Astaforoff, an inmate serving Authority (FHA).87 Mrs. Bentley had been in a near a sentence for arson, went on a hunger strike. The vegetative state since at least 2010. She did not rec- Attorney General of Canada sought an “order that ognize or respond to her family, speak, or make more the provincial authorities be compelled to provide than very limited physical movements. She spent her with such medical attention as is deemed ap- her time “motionless in bed or slumped in a wheel- propriate in order to preserve her life and health.” chair.”88 Importantly for this discussion, she required The trial court found Astaforoff competent: “Medi- spoon feeding by caregivers. cal evidence indicates that she is rational and fully Dispute between the Bentley Family and Maple- aware of what she is doing.” Consequently, the court wood. Mrs. Bentley’s husband and daughter said they refused to make the requested mandatory order.79 sent a copy of Mrs. Bentley’s Statement of Wishes to The Attorney General appealed. But the court of Maplewood House by at least the fall of 2011, along appeal dismissed the appeal, holding that prison with a letter that specifically requested that no pro- officials could not force feed the inmate without her vision of nourishment or liquids be implemented, consent.80 with comfort care as needed.89 Initially, the family members said that they reached an agreement with 7. Case of Margot Bentley the facility and Mrs. Bentley’s physician to cease In February 2014, the Supreme Court of British the oral provision of food and liquids.90 They were Columbia issued a 44-page judgment that compre- later informed, however, that FHA had intervened hensively assessed the legality of VSED.81 Citing the and refused to allow the feedings to be stopped.91 two cases described above, the B.C. court confirmed Mr. Bentley and Ms Hammond, Mrs. Bentley’s the legality of contemporaneous VSED by a capaci- designated medical decision makers, responded by tated patient. “Canadian courts have found that an requesting a transfer to a palliative care facility. Such adult may refuse to eat or drink and die by dehydra- a facility was located and willing to accept Mrs. tion and starvation if he is mentally capable of mak- Bentley, but the FHA denied the request.92 The fam- ing the decision.”82 But the court’s analysis high- ily had several meetings with Maplewood person- lights some of the difficulties of advance planning nel and FHA representatives between late 2011 and in the VSED context. early 2013. But they were unable to reach an agree- Margot Bentley’s Decision to VSED. Margaret ment. Ms Hammond alleged that Leanne Lange, a (“Margot”) Bentley was an 82-year-old retired nurse clinical specialist in adult abuse and neglect for the who cared for patients suffering from dementia dur- FHA, told her that if the family tried to transfer Mrs. ing her career.83 Partially as a result of those experi- Bentley, “we will physically stop you.”93 ences, she executed a Statement of Wishes in 1991. In July 2013, Mrs. Bentley’s doctor came across This document lays out her directions and prefer- a “police order” in her patient file that stated: “In ences for her future healthcare should she ever be- the event that John Bentley (spouse) and/or Kather- come incapacitated.84 In it, she stated, “If at such a ine Hammond (daughter) attempt to remove or re- time the situation should arise that there is no rea- move Margot Bentley from the premises of Maple- sonable expectation of my recovery from extreme wood House, then the Abbotsford Police must be physical or mental disability, I direct that I be al- contacted to report that Margot Bentley is being re- lowed to die and not be kept alive by artificial means moved or has been removed in contravention of the or ‘heroic measures.’ ”85 Mrs. Bentley listed specific Adult Guardianship Act and must be returned to instructions, including “no nourishment or liquids.” the care of Fraser Health immediately.”94 She designated her husband, John Bentley, and her FHA’s decision appears to have been based on a daughter, Kathy Littler (now Katherine Hammond) legal opinion it obtained regarding Mrs. Bentley’s as her surrogate medical decision makers should she case, which is referenced and summarized in the become unable to make decisions for herself. FHA’s Clinical Ethics Consult for Margaret Bentley.95 Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. Volume 25, Number 1 The Journal of Clinical Ethics 75

The lawyer who provided the opinion apparently FHA responded to the petition on 11 Septem- told FHA that orally ingested food and fluids fall ber 2013, opposing all orders sought.104 It asserted under the heading of basic care and that a court that the orders and directions it received from Mrs. would be unlikely to rule in favor of Mrs. Bentley’s Bentley’s family were inconsistent. For example, a family, because her Statement of Wishes from 1991 signed but unwitnessed living will of uncertain date was “not legally binding under current legislation.” (but probably post-dating Mrs. Bentley’s Statement Consequently, any staff who participated in discon- of Wishes) specifically refused “tube feeding” and tinuing Mrs. Bentley’s feedings could face liability.96 other means of artificially prolonging life, but ex- The FHA also procured an Assessment of Inca- plicitly accepted “basic care.”105 FHA further as- pacity for Mrs. Bentley under the Adult Guardian- serted that Mr. Bentley agreed to continue oral feed- ship Act.97 The final report, from 6 March 2013, rated ing in January 2012, and that he and Ms Hammond Mrs. Bentley as stage 7 Alzheimer’s, or very severe consented to continued feeding with reduced cognitive decline (severe dementia) on the Global prompting on or around April 2013.106 The FHA also Deterioration Scale for Assessment of Primary De- cited two intervention orders from 2009 and 2011, generative Dementia.98 Deborah O’Connor, PhD, executed by Mrs. Bentley’s husband, directing that RSW, considered Mrs. Bentley’s family’s argument Mrs. Bentley receive “supportive measures.”107 The that her chewing and swallowing was purely reflex- FHA framed its position as seeking clarification of ive. She also considered FHA staff members’ argu- which orders actually should be followed.108 ment that by sometimes accepting food and some- The FHA also denied that there ever was an times closing her mouth to keep the spoon from en- agreement to stop Mrs. Bentley’s feeding and insisted tering her mouth, Mrs. Bentley did exercise some that it was the Maplewood staff, not FHA, who ob- choice in the matter.99 jected to stopping the feeding, and that the FHA did Dr. O’Connor ultimately adopted a middle posi- not control the employees of Maplewood.109 More- tion. She concluded: “I was able to determine what over, the FHA denied that it thwarted any transfer food Mrs. Bentley preferred—suggesting that she attempts other than those to a private residence.110 does have some means for communicating. I was According to the FHA, one proposed alternate facil- also able to determine when she was clear that she ity refused to accept Mrs. Bentley when it learned did not want more food. However, there was a grey she was not to be fed, and a hospice palliative care space where it was unclear how much she was re- physician examined Mrs. Bentley and determined sponding reflexively to continued prompting and that she did not meet hospice residential care crite- hence, unable to exert a choice. Erring on the side ria.111 The FHA described the “police order” as that she does retain some capacity here, my sugges- merely an emergency protocol in case Mrs. Bentley’s tion would be that fewer attempts be made to con- family attempted to move her to a private residence vince her to continue eating.”100 before the matter had been settled.112 Lawsuit by the Bentley Family. In August 2013, In keeping with the March 2013 assessment of Mrs. Bentley’s husband and daughter petitioned the Mrs. Bentley’s capacity for choosing whether or not Supreme Court of British Columbia, seeking to cease she wished to eat, “FHA’s position is that the offer- the provision of oral nutrition and hydration to Mrs. ing of food or liquids is part of comfort care or basic Bentley. First, they also sought a declaration that care, but there will come a point in time when feed- the oral provision of nourishment and liquids con- ing will no longer be necessary for comfort or may stituted the provision of healthcare under the Health itself cause discomfort, and FHA would agree that Care Consent Act, Adult Guardianship Act, and Rep- it is no longer appropriate to offer food to Margot at resentation Agreement Act.101 Second, the Bentley this point. Prior to this point, to cease offering food family sought an order to comply with Mrs. Bentley’s would be to actively bring about a patient’s death Statement of Wishes, including the no nourishment when that patient is not otherwise actively dying.”113 or liquids provision. Third, they sought a declara- The FHA argued that Mrs. Bentley’s accepting tion that Mrs. Bentley’s 1991 Statement of Wishes food, chewing, swallowing, and showing food pref- and her orally expressed wishes constituted a “law- erences demonstrated her “consent” and constituted ful excuse” that relieved caregivers of their ordinary a defense to a common law battery claim.114 The FHA duties to provide food and fluids under the Crimi- argued that this consent constituted independent de- nal Code.102 Finally, they asserted that feeding and cision making that overrode the decisions of Mrs. hydrating Mrs. Bentley contrary to her expressed Bentley’s representatives,115 and that, if a family wishes violated her rights under the Charter of Rights member or anyone else was determined to be her and Freedoms of the Canadian Constitution.103 legally recognized decision maker, that person Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 76 The Journal of Clinical Ethics Spring 2014 would have to act in accordance with Mrs. Bentley’s The court concluded that Mrs. Bentley’s AD and wishes, which were still unclear from all of the con- other earlier expressed wishes were invalid in light flicting documents.116 The FHA also argued that hand of her “current consent.”127 She had capacity to con- feeding is not healthcare, and should not be regarded sent to assistance with feeding, and she continued as such, when applying statutory law to VSED.117 to give her consent. Consequently, the court held The Province of British Columbia also filed a that her careproviders must continue to offer such response to the Bentley petition. It emphasized that assistance.128 This is a remarkably low test for deci- hand feeding does not constitute healthcare,” and it sional capacity. noted the potential liability of Mrs. Bentley’s care- Dicta of the SCBC. While that is the holding of givers, should her feeding be stopped.118 The prov- the court, it proceeded to offer nearly 100 paragraphs ince’s healthcare arguments were grounded not only of dicta (that is, the court answered several ques- in a reading of the definition of “healthcare” in the tions that were briefed and argued by the parties, Health Care Consent Act, but also in an argument even though those answers are not essential to the that defining feeding as healthcare broadly would decision). Specifically, the court examined the four require obtaining informed consent every time an ways through which medical decisions can be made individual patient received nourishment in a health- for an incapacitated individual: by guardian, health- care setting. The province advanced a public policy care agent, AD, and default surrogate. argument that this would require an overly burden- First, the court noted that different Canadian some amount of documentation.119 The province provinces reached different decisions on whether argued that, under the Criminal Code, caregivers who assistance with oral feeding and fluids falls within participated in a patient’s VSED could face crimi- the definition of healthcare. It concluded that, in nal liability for either counseling a person to com- B.C., oral nutrition and hydration is “personal care,” mit suicide, aiding and abetting suicide, or culpable not healthcare.129 Still, the court observed that such homicide.120 a determination is not necessarily dispositive; an The Judgment of the SCBC. In December 2013, adult has a common law right to refuse consent to the Supreme Court of British Columbia (SCBC) held either personal care or healthcare services.130 three days of hearings. In February 2014, it issued a Second, the court held that Mrs. Bentley’s 1991 judgment denying the petition of Mrs. Bentley’s hus- AD was not a valid “representation agreement.” This band and daughter that she not be given nourish- is the equivalent of a U.S. proxy directive or du- ment or liquids.121 The court recognized that the fam- rable power of attorney for healthcare. While the ily had significant evidence Mrs. Bentley would not court was prepared to overlook some defects in its have wanted such things in her then-current state.122 execution, it was troubled because the AD was un- But the court held that such evidence did not mat- clear. Specifically, while it was clear that Mrs. ter, because Mrs. Bentley still had decision-making Bentley intended her named representatives to have capacity to decide whether to eat. Obviously, as a authority to make healthcare decisions, it was un- consequence of being in stage 7 Alzheimer’s, Mrs. clear whether she intended them to also have au- Bentley lacked capacity to make most medical and thority to make personal care decisions.131 personal decisions. Yet, the court held that she re- Third, the court held that Mrs. Bentley’s 1991 tained capacity to accept or refuse food and fluids. Statement of Wishes was not valid as an instruc- Notably, only three medical experts testified at tional AD. Again, the document failed to conform trial: one for Mrs. Bentley and two for the FHA.123 to required execution formalities. And, again, its But only the two expert witnesses testifying on be- meaning was unclear. The court observed that the half of the FHA had experience with Alzheimer’s. phrase “no nourishment or liquids” appears under They testified that Mrs. Bentley was capable of con- a broader heading, “I direct that I . . . not be kept sent and indicated that consent by opening or not alive by artificial means or heroic measures.” The opening her mouth. These experts explained that court concluded that the best interpretation of the Mrs. Bentley’s behavior was not just reflexive when phrase “no nourishment or liquids” was that it did a spoon or cup was pressed to her lip, because she not refer to oral food and fluid. Instead, this phrase accepted different types and amounts of food and was just a specification of one specific type of “arti- liquids on different days.124 She expressed a prefer- ficial means or heroic measures” that Mrs. Bentley ence for certain flavors and stopped opening her did not want.132 Oddly, in reaching this conclusion, mouth, apparently when she felt full.125 The court the court did not consider the relevance of a hand- explained that it preferred the evidence of these written note on the AD: “In the event that . . . I am experts to that of the Bentley family’s expert, a gen- unable to recognize the members of my family, I ask eral physician.126 that I be euthanized.” Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. Volume 25, Number 1 The Journal of Clinical Ethics 77

Fourth, the court considered the family’s author- may make a contemporaneous choice to VSED. Far ity as a “temporary substitute decision maker.” This less clear is whether individuals can choose to VSED is the equivalent of a U.S. default surrogate. In B.C., in advance, as an exercise of their prospective au- as in the U.S., the law gives default surrogates a nar- tonomy. Fortunately, physicians and philosophers rower range of decision-making authority than are developing theories, tools, and maxims to help named “representatives.” Specifically, the B.C. stat- define how and when the practice of advance VSED ute permits temporary substitute decision makers can be legitimately and safely implemented.136 to refuse “healthcare necessary to preserve life” only when there is “substantial agreement” among the NOTES patient’s healthcare providers that such a decision to refuse substitute consent is “medically appropri- 1. T. Pope and L. Anderson, “Voluntarily Stopping ate.” Obviously, given the litigation, Mrs. Bentley’s Eating and Drinking: A Legal Treatment Option at the End providers did not agree with the family. Since their of Life,” Widener Law Review 17, no. 2 (2011): 363-427. concurrence was necessary, the court concluded that 2. P. Smith et al., “VSED and Hospice Care: A Case Study,” NewsLine, September 2013, pp. 10-13, http:// Mrs. Bentley’s family lacked the authority to direct www.nxtbook.com/nxtbooks/nhpco/newsline_201309/ 133 that she not be given nourishment or liquids. index.php?startid=10, accessed 3 February 2014. It is important to note that the outcome of this 3. E. Eckholm, “Aid in Dying Movement Takes Hold case turned on the facts. While the court denied the in Some States,” New York Times, 8 February 2014; P. Span, petition brought on behalf of Mrs. Bentley, it held “The Right to Choose a Fatal Fast,” New York Times, 31 that a healthcare provider could legally act on a pa- August 2011; S. Schaffer, “Sunday Dialogue: Choosing tient’s advance directive to VSED. The patient must How We Die,” New York Times, 30 March 2013; M. simply provide clearer and more precise instructions Campbell, “Tomas Young, Wounded War Vet is Ready to than Mrs. Bentley. The lesson for other B.C. resi- Die on His Own Terms,” Kansas City Star, 21 March 2013; A. Curtis, “Yarmouth Man Describes How His Terminally dents is: (a) draft representation agreements that Ill Wife Handles Death on Her Own Terms,” Bangor Daily clearly give an agent authority to stop life-sustain- News, 2 November 2013; “Mother Considers Hitman as ing personal care; and (b) draft statements of wishes Way to Die,” Dominion Post, 17 March 2013; M. New- that clearly refuse “oral” nourishment or liquids “by house, Life, Death, and Iguanas (Amazon Digital, 2012). mouth.” Similarly, individuals in most U.S. states 4. Pope and Anderson, see note 1 above. can do the same thing. Only a handful of states re- 5. J. Savulescu, “Editorial: A Simple Solution to the strict the authority of ADs and healthcare agents to Puzzles of End of Life? Voluntary Palliated Starvation,” medical treatment and exclude oral nutrition and Journal of Medical Ethics 40, no. 2 (2014): 110-3. hydration from the definition of medical treatment. 6. T. Quill and I. Byock, “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Perhaps the more significant (if not alarming) Voluntary Refusal of Food and Fluids,” Annals of Inter- aspect of the court’s judgment is its holding on ca- nal Medicine 32, no. 5 (2000): 408-14. pacity. It seems remarkable to hold that, when a 7. Quill and Byock, see note 6 above, p. 409; L. Ganzini spoon or glass is pressed to the lips of someone with et al., “Nurses’ Experiences with Hospice Patients Who severe dementia, the mere opening of her or his Refuse Food and Fluids to Hasten Death,” New England mouth evidences decisional capacity to continue Journal of Medicine 349, no. 4 (2003): 359-65. These rea- eating and drinking. Mrs. Bentley may have the ca- sons are similar to those reported by patients seeking phy- pacity to “communicate a choice.” But this is just sician-assisted suicide in Oregon and Washington. See one component of capacity. She does not understand “Oregon’s Death with Dignity Act—2013,” http://public. health.oregon.gov/ProviderPartnerResources/Evaluation the relevant information, does not appreciate the Research/DeathwithDignityAct/Documents/year16.pdf, situation and its consequences, and cannot reason accessed 3 February 2014; “Washington State Department 134 about treatment or care options. While some ju- of Health 2012 Death with Dignity Act Report Executive risdictions permit Ulysses contract-type ADs to over- Summary,” http://www.doh.wa.gov/portals/1/Documents/ rule future incapacitated objections, none permit Pubs/422-109-DeathWithDignity Act2012.pdf, accessed 3 overruling future capacitated objections.135 If the test February 2014. for capacity is really this low, then current “con- 8. Quill and Byock, see note 6 above, p. 409. sent” will often trump even the clearest of prior in- 9. Ibid., 410. structions. 10. Ganzini et al, see note 7 above, pp. 361-4. 11. Ibid., 363. 12. N. Cantor, “On Hastening Death Without Violat- CONCLUSION ing Legal and Moral Prohibitions,” Loyola University of Chicago Law Journal 37, no. 2 (2006): 407-31; Quill and Medical, ethical, and legal commentators are Byock, see note 6 above, p. 410. reaching a near consensus that capacitated patients 13. Quill and Byock, see note 6 above, p. 410; Pope Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 78 The Journal of Clinical Ethics Spring 2014 and Anderson, see note 1 above, pp. 392-5. tary Stopping of Eating and Drinking at the End of Life— 14. Quill and Byock, see note 6 above, p. 410; Pope A ‘Systematic Search and Review’ Giving Insight into an and Anderson, see note 1 above, pp. 389-92. Option of Hastening Death in Capacitated Adults at the 15. Ganzini et al, see note 7 above, p. 362. End of Life,” BMC Palliative Care 13, no. 1 (2014). 16. B. Chabot and S. Braam, Uitweg (Amsterdam, the 26. See Bouvia v. Superior Court, 225 Cal. Rptr. 297, Netherlands, Nijgh & Van Ditmar 2012). 307 (Cal. Ct. App. 1986); State v. McAfee, 385 S.E.2d 651, 17. D. Muller, “Physician-Assisted Death is Illegal in 652 (Ga. 1989); McKay v. Bergstedt, 801 P.2d 617, 632 (Nev. Most States, So Many Patients Make Another Choice,” 1990). Health Affairs 31, no. 10 (2012): 2343-6. 27. See Cruzan, 497 U.S. at 279. According to the Re- 18. Koninklijke Nederlandsche Maatschappij tot statement of Torts, Second, “An actor is subject to liabil- bevordering der Geneeskunst (KNMG), “The Role of the ity to another for battery if (a) he acts intending to cause a Physician in the Voluntary Termination of Life,” 2011, harmful or offensive contact with the person of the other http://knmg.artsennet.nl/Publicaties/KNMGpublicatie/Po- or a third person, or an imminent apprehension of such a sition-paper-The-role-of-the-physician-in-the-voluntary- contact, and (b) an offensive contact with the person of termination-of-life-2011.htm, accessed 13 February 2014; the other directly or indirectly results.” § 18. Restatement T. Sheldon, “Doctors Should Care for People Who Choose of Torts, Second (Philadelphia, Pa.: American Law Insti- to Die by Starvation, Says Dutch Medical Association,” tute, 1965). BMJ 348 (2014): g331. 28. T.M. Pope, “Clinicians May Not Administer Life- 19. Many of the criticisms of VSED are similar to ob- Sustaining Treatment without Consent: Civil, Criminal, jections that have been raised to the legalization of physi- and Disciplinary Sanctions,” Journal of Health & Biomedi- cian-assisted suicide. See, e.g., D. Coleman, “Opinion: N.J. cal Law 9, no. 2 (2013): 213-96. See Duncan v. Scottsdale Assisted Suicide Proposal is Dangerous Prescription,” Med. Imaging, 70 P.3d 435, 438-39 (Ariz. 2003) (adminis- http://www.nj.com/times-opinion/index.ssf/2013/08/ tration of an unwanted painkiller); Pratt v. Davis, 79 N.E. opinion_nj_assisted_suicide_pr.html, accessed 3 February 562, 563 (Ill. 1906) (unauthorized removal of patient’s 2014; A. Gomes, “Doctor: New Jersey Assisted Suicide Bill uterus); Roberson v. Provident House, 576 So. 2d 992, 994 is Dangerous,” http://www.lifenews. com/2014/01/01/doc- (La. 1991) (insertion of in-dwelling catheter over nursing tor-new-jersey-assisted-suicide-bill-is-dangerous/, ac- home patient’s objections); Schloendorff v. Soc’y of N.Y. cessed 3 February 2014. Hosp., 105 N.E. 92, 93 (N.Y. 1914) (refusing to hold hospi- 20. See, e.g., Cruzan v. Dir., Mo. Dep’t of Health, 497 tal liable for conduct of physicians but stating that “[e]very U.S. 261, 296 (1990) (Scalia, J., concurring) (“Starving human being of adult years and sound mind has a right to oneself to death is no different from putting a gun to one’s determine what shall be done with his own body; and a temple as far as the common-law definition of suicide is surgeon who performs an operation without his patient’s concerned.”). consent commits an assault, for which he is liable in dam- 21. N.E. Goldstein et al., “Prevalence of Formal Ac- ages.”); Rolater v. Strain, 137 P. 96, 97 (Okla. 1913) (re- cusations of Murder and Euthanasia against Physicians,” moval of bone from patient’s foot despite express pre-op- Journal of Palliative Medicine 15, no. 3 (2012): 334-9; ; erative agreement that no bones would be removed); Es- L.M. Cohen, “Murder and Euthanasia Accusations against tate of Leach v. Shapiro, 469 N.E.2d 1047, 1051 (Ohio Ct. Physicians,” Mayo Clinic Proceedings 87, no. 9 (2012): 814- App. 1984) (cause of action recognized for wrongfully plac- 16. ing and maintaining patient on life-support system). 22. See, e.g., M.Y. Rady and J.L. Verheijde, “Distress 29. See Cruzan, 497 U.S. at 279; Thor v. Superior from Voluntary Refusal of Food and Fluids to Hasten Court, 855 P. 2d 375, 384 (Cal. 1993); Bouvia, 225 Cal. Death: What is the Role of Continuous Deep Sedation?” Rptr. at 303-04; Brophy v. New England Sinai Hosp., Inc., Journal of Medical Ethics 38, no. 8 (2012): 510-2; LifeTree, 497 N.E.2d 626, 631 (Mass. 1986); In re Hier, 464 N.E.2d Inc., “Medical Decisions at the End of Life,” http://www. 959, 964 (Mass. App. Ct. 1984); In re Requena, 213 N.J. lifetree.org/resources/pcbrochure.pdf, accessed 3 Febru- Super. 475, 485-86 (N.J. Super. Ct. Ch. Div. 1986), aff’d ary 2014 (“Death by starvation and dehydration is painful 213 N.J. Super. 443 (Ct. App. Div. 1986) (per curiam). and inhumane.”). 30. N. Cantor and G. Thomas, “The Legal Bounds of 23. See, e.g., “Not Dead Yet Disability Advocates Criti- Physician Conduct in Hastening Death,” Buffalo Law Re- cal of C&C’s Promotion of Death by VSED,” Not Dead Yet: view 48, no. 1 (2000): 83-173. The Resistance, www.notdeadyet.org/not-dead-yet-disabil- 31. Morton v. Wellstar Health Sys., Inc., 653 S.E.2d ity-advocates-critical-of-ccs-promotion-of-death-by-vsed, 756, 757 (Ga. Ct. App. 2007) (The consent form read “AU- accessed 15 September 2013; W. Peace, “A Peaceful Death THORIZATION OF TREATMENT: I do hereby consent to or a Risk to People with Disabilities?” http://www. medical or hospital care encompassing diagnostic proce- thehastingscenter.org/Bioethicsforum/Post.aspx? dures and medical treatment as may be . . . ordered by id=6285&blogid=140, accessed 3 February 2014. physicians, employees, or agents responsible for such 24. U.K. Remane and A. Fringer, “Freiwilliger Verzicht medical or hospital care. I further consent to treatment by auf Nahrung und Flüssigkeit in der Palliative Care: ein authorized employees or agents of [Wellstar] who are as- Mapping Review, [Voluntary renunciation of food and flu- signed to my . . . care.”) ids in palliative care: a mapping review],” Pflege [Care] 32. See Bentley v. Maplewood Seniors Care Society, 26, no. 6 (2013): 411-20. 2014 BCSC 165 (holding that a long-term care facility’s 25. N. Ivanovic, D. Bueche, and A. Fringer, “Volun- assistance with eating and drinking is not medical treat- Alzheimer’s Australia, End of Life Care for People with Dementia: Survey Report (Feb. 2014). Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. Volume 25, Number 1 The Journal of Clinical Ethics 79 ment); Barber v. Superior Court, 195 Cal. Rptr. 484, 490 41. Ibid., 282-83. (Ct. App. 1983) (“Medical procedures to provide nutri- 42. Ibid., 283. tion and hydration are more similar to other medical pro- 43. Ibid., 283, 282. cedures than to typical human ways of providing nutri- 44. Ibid., 283. The court employed the concept of jus- tion and hydration.”); McConnell v. Beverly Enterprises- ticiability to deny A.B.’s request. “Justiciability” refers to Conn., Inc., 553 A.2d 596, 603 (Conn. 1989) (“[The state the idea that a case must be “suitable for adjudication by a statute] implicitly contemplates the possible removal from court.” B.A. Garner, ed., Black’s Law Dictionary, 9th ed. a terminally ill patient of artificial technology in the form (St. Paul, MN: West Group, 2009). This case was not justi- of a device such as a gastrostomy tube, but it does not, ciable because it lacked ripeness, defined as “whether the under any circumstances, permit the withholding of nor- harm asserted has matured sufficiently to warrant judi- mal nutritional aids such as a spoon or a straw.”); In re cial intervention.” Warth v. Seldin, 422 U.S. 490, 499 n. Conroy, 486 A.2d 1209, 1236 (N.J. 1985) (“[I]t is hard to 10 (1975). Because the American legal system is based on shed the emotional symbolism of food. . . . However, arti- the application of law to facts, courts are reluctant to de- ficial feedings such as nasogastric tubes, gastrostomies, cide cases before the facts have fully developed to the point and intravenous infusions are significantly different from of an actual controversy. bottle-feeding or spoonfeeding—they are medical proce- 45. A.B., 477 N.Y.S.2d at 283. dures with inherent risks and possible side effects, insti- 46. Texas v. United States, 523 U.S. 296, 300 (1998); tuted by skilled health-care providers to compensate for Dinino v. State, 684 P.2d 1297 (Wash. 1984); Gabrynowicz impaired physical functioning.” Citations omitted.); v. Heitkamp, 904 F. Supp. 1061 (D.N.D. 1995). Requena, 213 N.J. Super. at 485-86 (“[A ] distinction should 47. P. Smith et al., “VSED and Hospice Care: A Case be made between natural feeding and artificial feeding. Study,” NewsLine, September 2013, http://www.nxtbook. For a person to eat and drink in the usual way, either en- com/nxtbooks/nhpco/newsline_201309/index.php? tirely under her own power or with the natural assistance startid=10, accessed 3 February 2014. of others, is part of the normal routine of living.”); In re 48. Ibid., 11. Guardianship of Grant, 747 P.2d 445, 453 (Wash. 1987) 49. Ibid., 11-2. (“Food and water are basic necessities of life; indeed, they 50. Ibid., 12. also carry tremendous emotional significance . . . At the 51. H Ltd v. J & Anor [2010] SASC 176 (Austl). same time, however, we must recognize that nasogastric 52. National Institute for Neurological Disorders and tubes and intravenous infusions are significantly differ- Stroke, “Post-Polio Syndrome Fact Sheet,” 28 December ent from typical human ways of providing nutrition.” Ci- 2012, http://www.ninds.nih.gov/disorders/post_polio/ tations omitted). detail_post_polio.htm, accessed 3 February 2014. 33. See, e.g., Del. Code Ann. § 2501(c) (“Artificial 53. H Ltd v. J & Anor [2010] SASC 176 P 3 (Austl). nutrition and hydration does not include assisted feed- 54. Ibid., 4. ing, such as spoon or bottle feeding.”); Idaho Code Ann. § 55. Ibid., 7. 39-502(3) (“Artificial nutrition and hydration” means sup- 56. Ibid., 4. “An Anticipatory Direction form allows plying food and water through a conduit . . . but does not you to write down the types of medical treatment you do include assisted feeding, such as spoon feeding or bottle or do not want if you become unable to tell people your- feeding.”); R.I. Gen. Laws Ann. § 23-4.10-1.1(2) (“Artifi- self and you are either in the terminal phase of a terminal cial feeding” means the provision of nutrition or hydra- illness or a persistent vegetative state.” Government of tion by parenteral, nasogastric, gastric, or any means other South Australia SA Health, “Medical Power of Attorney than through per oral voluntary sustenance.”). and Anticipatory Direction,” http://www.sahealthsa. 34. See section 2, above. gov.au/wps/wcm/connect/public+content/sa+health +in- 35. P. Span, “Right to Choose Fatal Fast is Tested,” ternet/health+topics/legal+matters/medical+power+of+ Seattle Times, 30 August 2011; Morris v. Brandenberg, No. attorney+and+anticipatory+direction, accessed 3 Febru- D-202-CV 2012-02909 (Bernalillo Cty., N.M., 13 January ary 2014. 2014. 57. H Ltd v. J & Anor [2010] SASC 176 P 5 (Austl). 36. P. Span, “Deciding to Die, Then Shown the Door,” 58. Ibid., 7. New York Times, 24 August 2011. 59. Ibid., 21. 37. Ibid. A recent survey of healthcare professionals 60. Ibid., 25. reports that “12% did not think that people have the right 61. Ibid., 32. to refuse food and fluids, with an additional 17% being 62. Ibid., 36. unsure.” Alzheimer’s Australia, “End of Life Care for 63. Ibid., 45. People with Dementia: Survey Report,” February 2014, 64. Ibid., 47-65. http://www.fightdementia.org.au/common/files/NAT/ 65. Ibid., 56 (quoting In re Joel Caulk, 480 A.2d 93, EOI_ExecSummary_Web_Version.pdf, accessed 13 Febru- 100 (NH 1984) (Douglas, J. dissenting)). ary 2014.. 66. Ibid., 57-8. 38. T.M. Pope, “Judicial Responsibility to Decide Bio- 67. Ibid., 64. ethics Cases,” Journal of Bioethical Inquiry 10, no. 4 (2013): 68. Ibid., 73, 76. 441-4. 69. Ibid., 88. 39. A.B. v. C., 477 N.Y.S.2d 281, 282 (Sup. Ct. 1984). 70. Ibid., 82, 79. 40. Ibid. 71. Ibid., 87-8. Articles from The Journal of Clinical Ethics are copyrighted, and may not be reproduced, sold, or exploited for any commercial purpose without the express written consent of The Journal of Clinical Ethics. 80 The Journal of Clinical Ethics Spring 2014

72. Ibid., 91. Registry No. S-135854, Pt. II., http://www.nidus.ca/PDFs/ 73. Ibid., 97. Nidus_Info_Response_to _Bentley_Petition_FHA. pdf, ac- 74. Nicklinson, R (on the application of) v A Primary cessed 3 February 2014. Care Trust [2013] EWCA Civ 961 (31 July 2013). 105. Ibid., Pt. IV, para. 3. 75. S. Boseley, “Tony Nicklinson Dies Six Days after 106. Ibid., Pt. IV, para .1(g), (i). Losing ‘Right to Die’ Case,” Guardian, 22 August 2012. 107. Ibid., Pt. IV, para. 6. 76. A. Evans, “Former Magistrate Starved Herself to 108. Ibid., Pt. IV, para. 17. Death,” Weston Mercury, 26 Oct. 2012. 109. Ibid., Pt. IV, para. 20-3, 26. 77. Manoir de la Pointe Bleue (1978) Inc. c. Corbeil, 110. Ibid., Pt. IV, para. 24, 27. [1992] Carswell Quebec 1623, para. 36 (Que. Super. Ct.) 111. Ibid., Pt. IV, para. 31, 33. (She was not actively (Can.). dying, she was expected to live beyond four months, she 78. H Ltd v. J & Anor [2010] SASC 176 P 5 (Austl), was well cared for where she was, her symptoms were para. 94. well controlled, and a new environment could cause her 79. British Columbia (Attorney General) v. Astaforoff, distress.) 1983 BCSC 510. 112. Ibid., Pt. IV, para. 38-9. 80. Ibid., 1983 BCCA 718. 113. Ibid., Pt. IV, para. 48. 81. Bentley v. Maplewood Seniors Care Society, 2014 114. Ibid., Pt. V, para. 52. BCSC 165. 115. Ibid., Pt. V, para. 55. 82. Ibid., para. 140. 116. Ibid., Pt. V, para. 56. 83. Brief for Petitioner, Bentley v. Maplewood Seniors 117. Ibid., Pt. V, para. 54. Care Society, Pt. II, para. 21-22. 118. Response to Petition, Her Majesty the Queen in 84. Ibid., Pt. II, para. 26, 30; Hammond Aff. para. 9. Right of the Province of British Columbia, Bentley v. Ma- 85. Ibid., Exh. B. plewood Seniors Care Society, Vancouver Registry No. S- 86. Ibid., Pt. II, para. 30. 135854, Pt. V., http://www.nidus.ca/PDFs/Nidus_Info_ 87. Ibid., Pt. II, para. 31, 10, 18. Response_to_Bentley_Petition_HMQ_BC.pdf, accessed 3 88. Ibid., Pt. II, para. 33. February 2014. 89. Ibid., Pt. II, para. 35-36. 119. Ibid., Pt. V, para. 10, 12, 19-27. 90. Ibid., Pt. II, para. 37. 120. Ibid., Pt. V, para. 31-40. 91. Ibid., Pt. II, para. 38. 121. Bentley v. Maplewood Seniors Care Society, 2014 92. Ibid., Pt. II, para. 40. FHA’s 21 December 2012 let- BCSC 165, paras. 60 and 153. ter explained, “The reason for this decision is because you 122. Ibid., paras. 5-7. indicated that in both [a residential care facility or Ms. 123. Ibid., paras. 22-30. Bentley’s home] Margot would not be provided with food 124. Ibid., para. 20. unless she communicates, in some way, her desire to be 125. Ibid., para. 49. fed. From Fraser Health’s clinical knowledge of Margot, 126. Ibid., paras. 50, 59. we know that if Margot is not fed by hand by a caregiver 127. Ibid., para. 54. then her basic nutritional needs will not be met. The fail- 128. Ibid., para. 60. ure to provide Margot with her basic nutritional needs 129. Ibid., paras. 62-81. will meet the definition of ‘neglect’ in the Adult Guard- 130. Ibid., para. 84. ianship Act.” Ibid., Exh. J. 131. Ibid., paras. 90-102. 93. Ibid., Pt. II, para. 42. 132. Ibid., paras. 103-13. 94. Ibid., Exh. I. 133. Ibid., paras. 114-20. The statute does not address 95. Ibid., Exh. D, 9-10. whether temporary substitute decision makers can con- 96. Ibid., 9. The legal opinion itself is not part of the sent to personal care necessary to preserve life. The court official record of this case, and the plaintiffs have never held that they do not have that authority. Ibid., paras. 121- viewed the original, because the FHA asserts that it is pro- 45. tected by solicitor-client privilege. Ibid., Pt. I, para. 48; 134. P.S. Appelbaum, “Assessment of Patients’ Com- Exh. F. petence to Consent to Treatment,” New England Journal 97. Ibid., Exh. L. of Medicine 357, no. 18 (2007):1834-40. 98. Ibid., Exh. L, App. 1, p. 33. 135. 18 Vt. Stat. Ann. § 9707(h)(1). 99. Ibid., Exh. L at 31-32. 136. P.T. Menzel and M.C. Chandler-Cramer, “Advance 100. Ibid., 32. Directives, Dementia, and Withholding Food and Water 101. Ibid., Pt. I, para. 8-17. by Mouth” (in submission, readers may contact 102. Ibid., Pt. I, para. 21. [email protected]). Menzel and Chandler-Cramer rightly 103. Ibid., Pt. I, para. 23. (The petition specifically note that the strategy of employing VSED in dementia cites Mrs. Bentley’s freedom of conscience; religious free- through ADs has emerged fairly recently. Stanley Terman dom of thought and belief; and her rights to life, liberty, has been a steadfast and early advocate. See his various and security of the person, equal protection, and equal materials at www.Caring Advocates.org and in S.A. benefit of the law without discrimination.) Terman, The Best Way to Say Goodbye: A Legal Peaceful 104. Response to Petition, Fraser Health Authority, Choice at the End of Life (Carlsbad, Calif.: Life Transitions Bentley v. Maplewood Seniors Care Society, Vancouver Publications, 2007). Bioethical Inquiry DOI 10.1007/s11673-015-9652-6

RECENT DEVELOPMENTS

Decision-Making: At the End of Life and the Provision of Pretreatment Advice

Thaddeus Mason Pope & Bernadette J. Richards

Received: 17 June 2015 /Accepted: 25 June 2015 # Journal of Bioethical Inquiry Pty Ltd. 2015

Prospective Autonomy and Dementia: Ulysses Seniors Care Society, 2014 BCSC 165; Bentley v. Contracts for VSED Maplewood Seniors Care Society, 2015 BCCA 91).

Introduction Factual Background: Margaret Bentley

Despite a dearth of affirmative judicial or legislative Margaret Anne Bentley (“Margot”) is an eighty-four- guidance, it is generally accepted that a capacitated year-old retired nurse who cared for patients suffering individual may legally and ethically hasten his or from dementia during her career. Partially as a result of her death by voluntarily stopping eating and drink- those experiences, in 1991 she executed an advance ing(VSED)(PopeandAnderson2011). In contrast, directive that stated: “If at such a time the situation it is far more controversial whether an individual should arise that there is no reasonable expectation of can VSED when s/he lacks capacity to do so con- my recovery from extreme physical or mental disability, temporaneously (Menzel and Chandler-Cramer I direct that I be allowed to die and not be kept alive by 2014). It remains unsettled whether an individual artificial means or heroic measures” ([5]). Margot also may use an advance directive or surrogate decision- listed specific instructions, including “no nourishment maker to restrain caregivers from offering food and or liquids.” She designated her husband and daughter as fluids when s/he later reaches a pre-defined state of her surrogate medical decision-makers. advanced dementia. Two new court decisions from In 1999, Margot was diagnosed with Alzheimer’s the Canadian province of British Columbia are disease. Consistent with her advance directive, Margot amongthefewintheworldtoaddressthelegitima- repeatedly told her family that she wished to be allowed cy of advance VSED (Bentley v. Maplewood to die when she reached a stage of advanced dementia. That soon happened. By 2005, Margot’s condition had deteriorated to the point that she needed to be moved to a residential care facility. In 2013, she was diagnosed with stage seven Alzheimer’s (severe dementia). Margot T. M. Pope remains in a near-vegetative state. She does not recog- Hamline University School of Law, 1536 Hewitt Avenue, Saint Paul, Minnesota 55114, USA nize or respond to her family. She has lost all verbal e-mail: [email protected] abilities and basic psychomotor skills. She neither speaks nor makes more than very limited physical * B. J. Richards ( ) movements. She spends her days “motionless in bed Law School, University of Adelaide, North Terrace, ” Adelaide 5005, Australia or slumped in a wheelchair with her eyes closed. Most e-mail: [email protected] importantly, she requires spoon-feeding by caregivers. Bioethical Inquiry

Dispute Over Feeding (that Margot would not have wanted hand-feeding in her then-current state). But the court held that such evidence Margot’s family wanted to honour her advance directive did not matter, because Margot still had decision- and other instructions. So, once Margot had reached making capacity to decide whether to eat. severe dementia, her family asked the care facility to Obviously, as a consequence of being in stage seven stop providing food and liquids. But the facility refused Alzheimer’s, Margot lacked capacity to make most to stop feeding Margot. The facility also refused to allow medical and personal decisions. But capacity is not an the family to either take Margot home or transfer her to all-or-nothing concept. It is decision-specific. The court another care facility. Frustrated, in August 2013, held that she retained capacity to accept or refuse food Margot’s husband and daughter petitioned the Supreme and fluids, or at least that Margot’s family failed to rebut Court of British Columbia (the province’s general trial the legal presumption that she had such capacity. court). They asked the court for declaratory relief that This is a remarkably low test for decisional capacity. would prohibit the facility from providing Margot with But it seems to be a consequence of the limited eviden- oral nutrition and hydration. tiary record. Three medical experts testified at trial. Only the two testifying on behalf of the facility had experi- The Lower Court Decision ence with Alzheimer’s. They both testified that Margot was capable of consent and indicated or manifested that In February 2014, the Supreme Court of British Colum- consent either by opening or by not opening her mouth. bia issued a forty-four-page judgment that comprehen- These experts explained that Margot’s behaviour was sively assesses the legality of VSED. While the court not just reflexive when a spoon or cup was pressed to confirmed the legality of contemporaneous VSED by a her lip, because she accepted different types and differ- capacitated patient, it denied the family’s petition that ent amounts of food and liquids on different days. They Margot not be given nourishment or liquids. The court’s testified that Margot expressed a preference for certain analysis highlights some of the difficulties and chal- flavours and stopped opening her mouth apparently lenges of advance planning in the VSED context. when she felt full. The trial court explained that it preferred the evidence of these experts to that of the Capacitated Patients May VSED family’s expert, a general physician. Having found that Margot was capable of giving, and Looking to several prior court decisions in Canada and was actually giving, “current consent” to feeding, the Australia, the court held that a capacitated patient may court logically concluded that Margot’s advance direc- make a contemporaneous decision to VSED. “Canadian tive and other earlier expressed wishes were all invalid courts have found that an adult may refuse to eat or and irrelevant. Margot had capacity to consent to assis- drink and die by dehydration and starvation if he is tance with feeding, and she continued to give her con- mentally capable of making the decision” ([140]). But, sent. Consequently, the court held that her care providers in 2014, Margot lacked capacity to VSED. So, the court must continue to offer such assistance. proceeded to analyse three other questions. First, did Margot now have the capacity to consent to hand-feed- Oral Nutrition and Hydration Is Not Healthcare ing? Second, if Margot now lacked such capacity, had she made a prior decision to VSED when she still had While the trial court’s judgment denying the family’s capacity? Third, should such a prior decision be petition is amply supported by its factual finding of honoured today? current consent, the court offered nearly one hundred paragraphs of dicta. It answered several questions that Opening the Mouth Manifests Consent were briefed and argued by the parties. Specifically, assuming that Margot now lacked capacity to make a If Margot has decisional capacity to consent to hand- decision about oral food and fluid, did she make a prior feeding, then her present manifestation of consent to decision to VSED? If so, should such a decision be hand-feeding constitutes a revocation of any prior con- honoured today? trary instructions. The court acknowledged that the fam- But first, the court had to answer a threshold ques- ily had significant evidence of such prior instructions tion. In British Columbia, as in many jurisdictions, Bioethical Inquiry many of the legal vehicles for making decisions on Third, the court considered the family’sauthorityas behalf of an incapacitated individual are limited to a “temporary substitute decision maker” ([114]). In “healthcare decisions.” The court concluded that assis- British Columbia, as in many jurisdictions, the law tance with oral feeding and fluids does not fall within gives “default” surrogates a narrower range of the definition of “healthcare.” Instead, oral nutrition and decision-making authority than named “representa- hydration is “personal care” or “basic care.” tives” or “agents.” Specifically, the British Columbia statute permits temporary substitute decision-makers to refuse “healthcare necessary to preserve life” only Advance Directives for VSED Must Be Extra Clear when there is “substantial agreement” among the pa- tient’s healthcare providers that such a decision to On the assumption that Margot lacked capacity, the refuse substitute consent is “medically appropriate.” court proceeded to analyse three mechanisms through Obviously, given the litigation, Margot’sproviders which a VSED decision could be made on her behalf. did not agree with the family. Since their concurrence Because of the unique facts in the case, the court con- was necessary, the court concluded that Margot’sfam- cluded that none was available to Margot. ily lacked the authority to direct that she not be given First, the court held that Margot’s1991advance nourishment or liquids. directive was not a valid “representation agreement.” This is the equivalent of a proxy directive or durable Court of Appeal Decision power of attorney for healthcare. While the court was prepared to overlook some defects in its execution, it Margot’s family did not appeal most of the trial court’s was troubled because the advance directive was unclear. findings and conclusions. Their only ground of appeal Specifically, while it was clear that Margot intended her related to the question of consent in relation to the named representatives to have authority to make common law tort of battery. The family’stheorywas “healthcare” decisions, it was unclear whether she that the care facility providers were touching Margot intended them to also have authority to make “personal without consent. Specifically, the providers “prompted” care” decisions. or “prodded” Margot to eat by placing a spoon or glass Second, the court held that Margot’s 1991 docu- to her lips. If Margot kept her mouth closed, the pro- ment was not a valid instructional advance directive or viders would try several times. living will. While the court was prepared to overlook The Court of Appeal readily rejected the claim. First, some required execution formalities, it was again trou- the trial court had already made the factual finding that bled because the document’s meaning was unclear. Margot consented to the hand-feeding. Consent is a The court observed that the phrase “no nourishment “complete defense to the very technical battery that or liquids” appears under a broader heading, “Idirect might otherwise exist” ([14]). While this consent that I … not be kept alive by artificial means or heroic (Margot’s opening her mouth) chronologically comes measures.” Therefore, the court concluded that the best only after the alleged battery, the court concluded the interpretation of the phrase “no nourishment or liq- prompting and prodding was appropriate. Providers uids” was that it did not refer to oral food and fluid. must be “assiduous” in ascertaining the wishes of pa- Instead, this phrase was just a specification of one tients in the “here and now.” specific type of “artificial means or heroic measures” that Margot did not want ([111]). Significance of the Decision Oddly, in reaching this conclusion, the court did not consider the relevance of a handwritten note on the Perhaps the more significant (if not alarming) aspect of AD: “In the event that … I am unable to recognize the the trial court’s judgment (accepted by the appellate members of my family, I ask that I be euthanized” court) was its holding on decisional capacity. It seems ([5]). On the other hand, the evidence of Margot’s remarkable to hold that, when a spoon or glass is wishes and intent was further muddled by a second pressed to the lips of someone with severe dementia, advance directive that was signed, though not the mere opening of her or his mouth evidences ca- witnessed, after 1991. In it, Margot stated “Iaccept pacity to continue eating and drinking. While some basic care” ([9]). jurisdictions permit Ulysses contract-type advance Bioethical Inquiry directives to overrule future incapacitated objections, has signalled a retreat from the longstanding authority of none permit overruling future capacitated objections. If Sidaway v Board of Governors of the Bethlehem Royal the test for capacity is really this low, then current Hospital and the Maudsley Hospital [1985] AC 871 “consent” will often trump even the clearest and most (Sidaway) in the context of the provision of pretreatment vehement prior instructions. advice. The opinion, written by Lord Kerr and Lord Still, it is important to emphasize that the outcome of Reed, signifies judicial acknowledgement of a paradigm this case turned more on its peculiar facts than on the shift in the doctor–patient relationship and presents a law. First, with different (or better) evidence, other conclusion that since 1985, when Sidaway was handed courts will likely reach different conclusions about down, significant social and legal developments make whether patients with severe dementia have decision- an approach based on the assumptions underlying that making capacity to decide whether to continue eating decision “untenable.” This conclusion is elaborated on and drinking. Second, other patients can learn from this and supported through some additional comments made case and draft better representation agreements that by Lady Hale. clearly give their representatives or agents authority to stop life-sustaining personal care. Third, they can draft Background (and ideally record video) advance directives that clearly refuse “oral” nourishment or liquids “by mouth” The appellant in the case, Mrs. Nadine Montgomery, (Terman 2007). In short, by demonstrating the pitfalls claimed that the injuries suffered by her son during his in Margot’s case, the court has drawn a roadmap for birth (which resulted in significant disabilities) were due others to follow. to the negligence of Dr. McLellan, the treating obstetri- cian and gynaecologist employed by the Lanarkshire Health Board. There were two “distinct grounds of Conclusion negligence” raised in this case: the first arose out of her antenatal treatment and the failure to warn of the Medical, ethical, and legal commentators are reaching a risks of shoulder dystocia (the inability of the baby’s near consensus that capacitated patients may make a shoulders to pass through the pelvis [2]) and the second contemporaneous choice to VSED (Pope and West out of the management of her labour. It was the pretreat- 2014). Far less clear is whether individuals can choose ment advice and the application of the Sidaway test that to VSED in advance of severe dementia, as an exercise was the subject of the appeal. of their prospective autonomy. The court in this instance was “invited to depart from Perhaps the most significant benefit of the Bentley the decision of the House of Lords in Sidaway and to re- case will be to shine a spotlight on an unresolved social consider the duty of a doctor towards a patient in relation issue and focus attention on a topic that merits robust to advice about treatment” ([4]). The court accepted the social debate (White and Pope 2012). invitation and concluded that such a departure was Are we prepared to enforce Ulysses contracts and appropriate. A consideration of the specific facts and withhold food and fluids from ostensibly content indi- the reasoning of the lower courts will provide the nec- viduals? Are we prepared to do so even when they essary background to understand the rationale behind accept that food and fluid? Even when they request it? this decision. Margot’s case may help catalyse an important public Mrs. Montgomery was described as being small in discussion of these questions. stature and suffering from insulin-dependent diabetes —Thaddeus Mason Pope mellitus. Because of her medical condition, the preg- nancy was regarded as high risk and she was closely monitored. It is well established that women who suffer Warning of Material Risks: U.K. and Australian from diabetes are likely to have babies that are “larger Laws Converge than normal,” and the risk of shoulder dystocia has been labelled as the “prime concern” in diabetic pregnancies. A recent decision handed down by the Supreme Court Importantly, the condition was described by an expert of the United Kingdom (UKSC) (Montgomery v Lan- witness as a “major obstetric emergency associated with arkshire Health Board [2013] UKSC 11, Montgomery) a short and long term neonatal and maternal morbidity Bioethical Inquiry

[and] an associated neonatal morbidity” ([8]). There is omission to advise regarding the risk of shoulder dysto- clear clinical guidance provided by the General Medical cia would be accepted as proper by a responsible body Council (GMC) on the appropriate steps to be taken of peers. In the absence of an accepted practice of when shoulder dystocia occurs (which are not necessary providing such advice, the lack of a specific enquiry to outline here), but the conclusion was that “dealing by Mrs. Montgomery meant that there was no duty to with it is, at least, an unpleasant and frightening experi- inform her of the risk of shoulder dystocia (and associ- ence for [the mother]. It also gives rise to a variety of ated harms). The nature of Mrs. Montgomery’sen- risks to her health” ([11]). Additionally, it presents risks quiries was also relevant to the determination at the to the baby, including that of the umbilical cord becom- lower courts because she failed to meet the Sidaway ing trapped against the mother’s pelvis, causing standard of making a specific enquiry regarding shoul- prolonged hypoxia and resulting in cerebral palsy or der dystocia. Her argument that her expressed concerns death; the risk of this happening is less than 0.1 per cent regarding the size of her baby and the risks associated ([12]), but it was this risk that manifested here. with a vaginal delivery of a large baby should have Mrs. Montgomery was informed that she was hav- triggered a duty to advise of the risks was rejected on ing a larger-than-usual baby but not that there were the basis that the enquiries and concerns were of a significant “mechanical risks.” The decision not to general nature only and did not “set any obvious param- inform her of the specific risks was a deliberate one eters for a required response” ([32]–[33]). made by her doctor on the basis that, despite the 9–10 per cent chance of shoulder dystocia in diabetic The Decision mothers, it was not her practice to inform the patients of this risk. Her rationale was that the chance of “grave Once the background information was provided, a thor- problems” for the baby were very small, and she ough overview of Sidaway was presented along with the explained that if the condition was mentioned, then treatment of the Bolam test by the court in Sidaway.The most women would opt for a caesarean section, and in conclusion reached in this instance signalled a signifi- her view, “it is not in the maternal interests for women cant departure from the weight of judicial thought since to have caesarean sections” ([13]). Sidaway and drew the law in the United Kingdom into There was some discussion regarding the forecast alignment with that of Australia as expressed in Rogers size of the baby and the nature of Mrs. Montgomery’s vWhitaker(1992) 175 CLR 479: “It would therefore be broad anxiety regarding the size of her baby and her wrong to regard Sidaway as an unqualified endorsement ability to deliver vaginally. Dr. McLellan was aware of of the application of the Bolam test to the giving of this anxiety and acknowledged that if she had warned advice about treatment” ([57]). Mrs. Montgomery, she “would no doubt have requested The significant conclusion drawn here was that the a caesarean section” and thus elected not to warn her. “significance attached in Sidaway to a patient’sfailureto Labour was induced and after several hours became question the doctor is however profoundly unsatisfacto- arrested until “augmented by further hormones over a ry” ([58]). The rationale behind this conclusion was that further period of several hours” ([20]). Ultimately, the there “is something unreal about placing the onus of baby’s shoulder became “impacted,” and twelve mi- asking upon a patient who may not know that there is nutes elapsed between the appearance of the baby’shead anything to ask about” and the recognition that not only and delivery. During this time, the umbilical cord was do those who are most anxious lack knowledge to ask occluded, and he was deprived of oxygen. He suffered questions but are in the “greatest need of information.” from cerebral palsy (caused by deprivation of oxygen) In short, “the ignorance which such patients seek to have and a brachial plexus injury caused by Erb’spalsy dispelled disqualifies them from obtaining the informa- (paralysis of the arm). It was established and accepted tion they desire” ([58]). This somewhat pragmatic ap- that if Mrs. Montgomery had been warned of the risk of proach to the nature of the doctor–patient relationship shoulder dystocia, she would have opted for a caesarean was supported by reference to Rogers v Whitaker and an and the injuries would not have been sustained (facts are acknowledgement that the Australian High Court in that taken from the judgment [1]–[25]). case had reached an appropriate conclusion. This was The Sidaway test was applied by the lower courts, further endorsed through an overview of post-Sidaway which meant the relevant legal question was whether the decisions and the conclusion that the Rogers v Whitaker Bioethical Inquiry position that “adoctor’sdutyofcaretakesitsprecise Lady Hale presented a separate judgment that content from the needs, concerns and circumstances of served to add to the conclusions reached by the other the individual patient, to the extent that they are or ought Lords. She did, however, make one significant addi- to be known to the doctor” is “undoubtedly right” ([73]). tion when she expressed her unease with the doctor’s It is also worth noting that the judgment emphasized assertion that the patient did not need to be told this the changing nature of the doctor–patient relationship information because she would automatically opt for a since the time of both Bolam and Sidaway and conclud- caesarean as opposed to a vaginal birth. This opinion ed that the world has changed and, as a result, the law did not, in Lady Hale’s opinion, rest upon a purely needs to change as well. This conclusion was summa- medical judgement; rather, it was based upon a view rized in the following terms: imbued with value judgements that a vaginal birth is in some way morally superior to a caesarean delivery The social and legal developments which we have and, therefore, should fall short of a standard measured mentioned point away from a model of the rela- with reference to a “responsible body of peers.” In all tionship between the doctor and the patient based other matters, Lady Hale agreed with the more detailed upon medical paternalism. They also point away judgment outlined above. from a model based upon a view of the patient as Thus, we see the end of Bolam being applied to the being entirely dependent on information provided provision of pre-treatment advice as authorized by by the doctor. What they point towards is an Sidaway. Guidance as to how this will work in practice approach to the law which, instead of treating can be found by simple reference to the post-Rogers v patients as placing themselves in the hands of their Whitaker decisions in Australia, with both jurisdictions … doctors treats them so far as possible as adults applying a test of “materiality” that is determined who are capable of understanding ([81]). through careful consideration of the plaintiff’smedical This led to the conclusion that mirrors that of Rogers needs and personal circumstances and the nature of the vWhitaker, that the key to the duty of disclosure is an treatment to be provided (alongside any reasonable awareness of material risks ([82]). alternatives). There was general discussion regarding the develop- —Bernadette Richards ment of the law around the provision of pretreatment information, and three final points were made in conclusion: References 1. The assessment of whether a risk is material (and thus must be discussed) cannot be reduced to per- Menzel, P.T., and M.C. Chandler-Cramer. 2014. Advance direc- tives, dementia, and withholding food and water by mouth. centages; factors to be taken into account include The Hastings Center Report 44(3): 23–37. the nature of the risk, effect upon the life of the Pope, T.M., and L. Anderson. 2011. Voluntarily stopping eating patient, importance to the patient of the treatment, and drinking: A legal treatment option at the end of life. and alternatives. Widener Law Review 17(2): 363–427. 2. The doctor’s role as adviser involves dialogue. Pope, T.M., and A. West. 2014. Legal briefing: Voluntarily stop- ping eating and drinking. The Journal of Clinical Ethics 3. The therapeutic privilege exception should not be 25(1): 68–80. abused (see [89]–[91]). Terman, S.A. 2007. The best way to say goodbye: A legal peaceful choice at the end of life. Carlsbad, CA: Life Transitions Thus, the legal test for the discussion of “material” Publications. White, D.W., and T.M. Pope. 2012. The courts, futility, and the risks in the United Kingdom has been neatly brought ends of medicine. The Journal of the American Medical into line with the law in Australia. Association 307(2): 151–152. Narrative Inquiry in Bioethics

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PUBLISHED FOR THE FOUNDATION FOR NARRATIVE INQUIRY IN BIOETHICS

Volume 6 • Number 2 • Summer 2016

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Mission Statement The Johns Hopkins University Press publishes Narrative Inquiry in Bioethics: A Journal of Qualitative Research (NIB) on behalf of the Foundation for Narrative Inquiry in Bioethics. The Foundation exists to foster research and education in bioethics and related fi elds primarily through the publication of NIB. The Foundation is a 501(c) (3) nonprofi t public charity (EIN 27-1069500), which welcomes gifts to support its mission. Further information about the Foundation and the Editorial Board of NIB can be found at www.nibjournal.org.

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Number 2

Summer 2016 Contents

EDITORS’ NOTE v James M. DuBois, Ana S. Iltis, & Susan G DuBois

NARRATIVE SYMPOSIUM: PATIENT, FAMILY, AND CLINICIAN EXPERIENCES WITH VOLUNTARILY STOPPING EATING AND DRINKING (VSED)

Introduction: Voluntarily Stopping Eating and Drinking 75 Thaddeus Mason Pope

Personal Narratives 77 Carol Douglas and Bill Lukin, Julie Dziedzic, Katherine Hammond, Elizabeth and Bill Jose, Wendy Kohlhase, Adam Marks, Marilyn Mitchell, Phyllis Shacter, Susan Schaffer with Elliot Schaffer, and Janet Maelek, Judith Schwarz, Stanley Terman, Gregory Webster

Commentary

VSED: Death With Dignity or Without? 109 Mark Corbett

VSED Narratives: Exploring Complexity 115 Robert Horowitz, Bernard Sussman, Timothy Quill

Merits, Demands, and Challenges of VSED 121 Paul T. Manzel

RESEARCH ARTICLE

A Qualitative Study of the U.S. Clinical Ethics Services: Objectives and Outcomes 127 Leah McClimans, Geah Pressgrove, and James Rhea

CASE STUDY

Ethical Challenges in the Care of the Impatient with Morbid Obesity 145 Paul L. Schneider and Zhaoping Li

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A JOURNAL OF QUALITATIVE RESEARCH

EDITORS James M. DuBois, PhD, DSc Center for Clinical and Research Ethics, Washington University School of Medicine Ana S. Iltis, PhD Center for Bioethics, Health, and Society, Wake Forest University ASSOCIATE EDITOR FOR RESEARCH ARTICLES Emily E. Anderson, PhD, MPH Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine ASSOCIATE EDITOR FOR CASE STUDY ARTICLES Rebecca L. Volpe, PhD Assistant Professor of Humanities, Penn State College of Medicine MANAGING EDITOR Susan DuBois, MA Foundation for Narrative Inquiry in Bioethics, St. Louis, MO DIRECTOR OF COMMUNITY ENGAGEMENT Gianna McMillan, MA Patient Advocate/Research Subject Advocate EDITORIAL BOARD Dan Bustillos, JD, PhD Charles Lidz, PhD Nursing and Health Studies Center for Mental Health Services Research, University of Washington, Bothell University of Massachusetts Tod Chambers, PhD Hilde Lindemann, PhD Medical Humanities & Bioethics Program, Department of Philosophy, Michigan State University Northwestern University Martha Montello, PhD Rita Charon, MD, PhD Department of History and Philosophy of Medicine, Department of Medicine, College of Physicians & University of Kansas Medical Center Surgeons of Columbia University Kathryn Montgomery, PhD Raymond De Vries, PhD Medical Humanities & Bioethics, Northwestern University Bioethics Program, the Department of Obstetrics and Eric Racine, PhD Gynecology, and the Department of Medical Education, Neuroethics Research Unit, Institut de recherches cliniques de University of Michigan Medical School Montréal, Université de Montréal, and McGill University Renee Fox, PhD Laura Roberts, MD Department of Sociology, University of Pennsylvania Department of Psychiatry & Behavioral Sciences, Arthur W. Frank, PhD Stanford University Department of Sociology, University of Calgary Cynda Hylton Rushton PhD,RN, FAAN Elisa Gordon, PhD, MPH Berman Institute of Bioethics, Johns Hopkins University Division of Organ Transplantation, Department of Surgery, Martin L. Smith, STD Feinberg School of Medicine Northwestern University Center for Ethics, Humanities and Spiritual Care, Amy Haddad, PhD, MSN Cleveland Clinic Center for Health Policy and Ethics, Jeffrey P. Spike, PhD Creighton University Medical Center The John P. McGovern, M.D. Center For Health, Anne Hudson Jones, PhD Humanities, and The Human Spirit, The University The Institute for the Medical Humanities, of Texas Health Science Center at Houston University of Texas Medical Branch Jeremy Sugarman, MD, MPH, MA Barbara A. Koenig, PhD Berman Institute of Bioethics, Johns Hopkins University Department of Social & Behavioral Sciences Institute for Health Laurie Zoloth, PhD and Aging, University of California, San Francisco Center for Bioethics, Science and Society, Northwestern University

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Editors’ Note

e are pleased to publish the second issue of objectives that are most important, . . . experts of volume six of Narrative Inquiry in were concerned with the appropriateness of differ- WBioethics (NIB). ent proxy and direct measures.” The narrative symposium in this issue looks at The case study, “Ethical Challenges in the Care of voluntary stopping of eating and drinking (VSED). Inpatient with Morbid Obesity”, by Paul L. Schnei- The narrative symposium editor, Thaddeus M. der and Zhaoping Li, struggles with the question, Pope, in concert with NIB’s editorial staff, wrote how do clinicians and caregivers best handle morbidly the call for stories and invited the commentators. obese patients during extended inpatient treatment? The symposium offers personal stories from the Three separate ethics committee calls were made viewpoint of patients’ families and clinicians who about the care of this patient across several months. were involved in the VSED (voluntarily stopping They found that “The care of inpatients with morbid eating and drinking) decisions and process. There obesity presents a unique set of practical and ethical are three commentary articles on these narratives challenges to health care personnel. A disciplined by experts in philosophy, palliative care, and hos- approach to ethical analysis using the Principles pice medicine written by Mark Corbett; Paul T. of Biomedical Ethics framework may be helpful in Menzel; and Robert Horowitz, Bernard Sussman, dealing with these challenges.” and Timothy Quill. The research article in this issue asks, how do we measure the quality of clinical ethics services in health News about Narrative Inquiry in Bioethics care organizations? “A Qualitative Study of U.S. Clinical Ethics Services: Objective and Outcomes” For a list of current Calls for Stories and Author written by Leah McClimans, Geah Pressgrove, Guidelines, please visit www.nibjournal.org. and James Rhea explore this topic by analyzing 19 interviews in clinical ethics. They found division James M. DuBois, Ana S. Iltis among interviewees “in their emphasis of the kinds & Susan G. DuBois

Narrative Inquiry in Bioethics Volume 6.2 (2016) v © 2016 by Johns Hopkins University Press

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Voluntarily Stopping Eating and Drinking

Thaddeus Mason Pope†* †Mitchell Hamline School of Law *Correspondence concerning this article should be addressed to Thaddeus Mason Pope, JD, PhD, Mitchell Hamline School of Law, 875 Summit Avenue, Saint Paul, MN 55105. Email: [email protected]

Confl icts of Interest. The authors report no confl icts of interest. Abstract. This symposium includes twelve personal narratives from those who have personally participated in voluntarily stopping eating and drinking (VSED). This issue also includes three commentaries on these narratives by experts in philosophy, palliative care, and hospice medicine. The successes, challenges, and observations described by these narrative and commentary authors will not only inform the academic debate about the legitimacy of VSED but will also inform much needed practical guidance for patients, clinicians, and family members on how they can best implement and support VSED. Key Words. Bioethics, Death, Dehydration, Dementia, End–of–Life, Right to Die, Suicide, VSED, Voluntarily Stopping Eating and Drinking,

Introduction has not gained nearly as much public or scholarly Academics and policymakers have devoted sub- attention. This is perplexing. While scarce, all the stantial attention to medical aid in dying. Both high available studies report that VSED is a peaceful profi le court cases and legislative initiatives from and comfortable way to die (Bolt, Hagens, Wil- coast to coast pervade the media headlines. But lem, & Onwuteaka–Philipsen, 2015; Ganzini et al., medical aid in dying is just one means of hastening 2003). While medical aid in dying is characterized death. Moreover, as demonstrated by the well– as “active” because of the introduction of deadly documented record in Oregon and Washington, drugs, VSED is characterized as “passive” because medical aid in dying is used by less than one–half it entails only refusal and withholding. VSED refers of one percent of those who die each year. In part, to a patient who is physiologically able to take food this is due to tight eligibility criteria. Among other and fl uid by mouth but who makes a voluntary, things, the patient must be terminally ill, must have deliberate decision to stop eating and drinking with capacity at the time of the prescription, and must the intent to hasten death from dehydration (usually be able to self–ingest the lethal medication (Orentli- in 8 to 14 days) (Pope & West, 2014). cher, Pope, Rich Ben, & Physician Aid–in–Dying We need more personal and professional discus- Clinical Criteria Committee, 2015). sion of VSED. Medical aid–in–dying is legal in only In contrast, another means of hastening death, fi ve states (Pope & Anderson, 2011). In contrast, voluntarily stopping eating and drinking (VSED), VSED is legal in all 56 U.S. jurisdictions. Moreover,

Narrative Inquiry in Bioethics Volume 6.2 (2016) 75–108 © 2016 by Johns Hopkins University Press

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even in those states in which it has been affi rma- specifi cally on VSED. This October 2016 interdisci- tively authorized, aid in dying is limited to only plinary conference at Seattle University will address those individuals who concurrently have capacity ethical, legal, clinical, religious, personal, family, and and are terminally ill. In contrast, VSED is not so institutional issues that arise with VSED, including limited. For many patients, particularly those with contexts of hospice and dementia care. My connection advanced dementia, VSED may be their only exit to this conference allowed me access to invite contribu- option (Pope, 2015). tors to participate in the instant project.

The Call for Stories The Narratives The 12 stories that I include in this issue are my best The narratives provide a broad range of perspectives. attempt to refl ect both a diversity of experiences and As one might expect, given the subject matter, they disciplinary perspectives on VSED. In addition to the are emotionally compelling. The authors include 12 stories presented here, I am honored to include wives, husbands, sons, and daughters of patients three more in this issue’s online supplement. who underwent VSED. Plus, the perspectives are The “Call for Stories” was open to anyone who not limited to family members. Other narratives had participated in VSED to hasten death. I clari- come from hospice social workers, ethics consultants, fi ed that we were interested in the experiences of, nurses, psychiatrists, and palliative care physicians. among others: (a) individuals who have seriously considered VSED as an option; (b) individuals who witnessed or were engaged with a family member’s The Commentaries VSED; and (c) clinicians who were involved with This symposium also includes three expert com- a patient’s deliberations about, or experience with, mentaries on the narratives. These commentary VSED. We told authors that we wanted the stories authors are among the most prolifi c and thoughtful to give readers a sense of what it is like to undergo, writers on VSED. So, we are rather fortunate to see support, or encounter VSED. The call made clear them apply this experience and wisdom to draw that we were looking for both positive and negative out lessons from the narratives. experiences. Paul Menzel is a philosopher and bioethicist, Authors were asked to consider these four now emeritus at Pacifi c Lutheran University. He questions: first highlights the significant determination, • What do you want to tell us about your experi- resoluteness, and willfulness involved. He argues ence with VSED? Please share a particular story that this makes VSED very likely to be voluntary, describing what happened, how you felt, and a “considerable ethical advantage.” But Menzel how you reacted. • What about your experience was positive? What rightly notes that there is also a potential disad- was negative? Was anything surprising? vantage to this willful control. It requires support • What could have been done differently to from loved ones and clinicians. Obtaining this improve your experience? support is sometimes challenging given ignorance • What would you want to tell people who are and misunderstanding about VSED, particularly considering or are offered VSED? its association with negative images of starvation In addition to the publication of the “Call for Sto- and dehydration. Finally, Menzel assesses whether ries” by the editors of Narrative Inquiries in Bioethics, I VSED is suicide and how that conceptual question circulated the call on nearly a dozen social media plat- relates to its ethical legitimacy. forms and sent it directly to colleagues and experts. Robert Horowitz, Bernard Sussman, and Timothy I was particularly fortunate that concurrent with Quill are hospice and palliative care physicians at the this “Call for Stories” I served on the planning com- University of Rochester Medical Center. They empha- mittee for a two–day academic conference focused size features of VSED from the patient, clinician,

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and family perspectives. For the patient, they note Orentlicher D., Pope, T. M., Rich Ben, A., & Physician that the suffering motivating VSED is sometimes Aid–in–Dying Clinical Criteria Committee. (2016). “acute, severe, physical, and graphic.” Other times, Clinical criteria for physician aid in dying. Journal of Palliative Medicine, 19(3), 259–262. the motivating suffering is “more anticipatory and Pope, T. (2015). Prospective autonomy and dementia: immediate or more psychosocial than physical.” Like Ulysses contracts for VSED. In T. M. Pope and B. J. Menzel, they note that “VSED can be very diffi cult Richards (eds.), Decision–making: At the end of life to complete.” And the optimal timing can be hard to and the provision of pretreatment advice. Journal determine. For the clinician, Horowitz, Sussman, and of Bioethical Inquiry, 12(3), 389–394. DOI 10.1007/ s11673–015–9652–6. Quill emphasize: (a) the challenges in assessing deci- Pope, T. & West, A. (2014). Legal briefi ng: Voluntarily sional capacity, (b) how and when the option should stopping eating and drinking. Journal of Clinical Eth- be shared, as well as (c) the benefi ts and risks of con- ics, 25(1), 68–80. sultative support. For the family, they emphasize, on Pope, T. & Anderson, L. (2011). Voluntarily stopping the one hand, how the process offers the opportunity eating and drinking: a legal treatment option at the for family reconciliation and, on the one hand, the risk end of life. Widener Law Review, 17(2): 363–428 (2011). of harm, if family members disagree. Mark Corbett is a geriatric and palliative medi- cine physician at Wake Forest School of Medicine. He challenges prevailing assumptions and mis- Personal Narratives conceptions about VSED by assessing two central counterarguments. First, Corbett argues that VSED is consistent with the physician’s role and integ- My Life—My Death rity. Indeed, he concludes that patients are even Carol Douglas and Bill Lukin “entitled” to a willing physician’s assistance, because physicians have a “duty and obligation” to relieve suffering. Second, Corbett outlines the safeguards his 54–year old man had fallen out of a tree necessary to prevent error and abuse, concluding that at age nine years with subsequent paraple- they are suffi cient to mitigate slippery slope risks. T gia resulting from a fracture of his fourth thoracic vertebra. Despite this handicap he achieved a high level Conclusion of education to university level and went on to be a Growing evidence supports VSED as a safe means strong advocate for people with disability in Australia. of accelerating the dying process. But VSED remains He was very widely travelled with a diverse widely resisted by both healthcare practitioners and range of interests and hobbies including a great patients. In large part this resistance is due to misun- love of music, a knowledge of sound systems and derstanding and uncertainty. This symposium should he was especially passionate about fi ne food and help clarify the nature, benefi ts, and risks of VSED. wines. He lived alone, had never married but had a large circle of friends and particularly valued his relationships with two close friends who became References his Powers of Attorney (PoA). Bolt, E. E., Hagens, M., Willem, D., & Onwuteaka–Phil- This man had multiple admissions under a general ipsen, B. D. (2015). Primary care patients hastening medicine team for management of pressure areas and death by voluntarily stopping eating and drinking. tissue infections related. He required a hindquarter Annals of Family Medicine, 13(5), 421–428. amputation a year prior to meeting the Palliative Ganzini L., Goy, E. R., Miller, L. L., Harvath, T. A., Jackson, Care Service of this acute hospital. Involvement was A., & Delorit, M. A. (2003). Nurses’ experiences with hospice patients who refuse food and fl uids to hasten premised on his declining functional capacity, fre- death. New England Journal of Medicine, 349(4), 359–365. quent admissions and the need to start advance care

NNIBIB 66.2.2 11stst ppages.inddages.indd 7777 88/16/2016/16/2016 1:48:581:48:58 PPMM VOLUNTARILY STOPPING EATING AND DRINKING: A LEGAL TREATMENT OPTION AT THE END OF LIFE

THADDEUS MASON POPE*

LINDSEY E. ANDERSON**

ABSTRACT

Despite the growing sophistication of palliative medicine, many individuals continue to suffer at the end of life. It is well settled that patients, suffering or not, have the right to refuse life-sustaining medical treatment (such as dialysis or a ventilator) through contemporaneous instructions, through an advance directive, or through a substitute decision maker. But many ill patients, including a large and growing population with advanced dementia who are not dependent upon life-sustaining medical treatment, do not have this option. They have the same rights, but there is simply no life-sustaining medical treatment to refuse. Nevertheless, these patients have another right, another option by which to avoid suffering at the end of life. Patients with decision-making capacity may choose (through contemporaneous instructions) to voluntarily stop oral eating and drinking in order to accelerate the dying process. Moreover, patients without capacity often have the same option. Voluntarily stopping eating and drinking (VSED) is a clinically validated “exit option” that enables a good quality death. Significant and growing evidence supports VSED as a means of accelerating the dying process. Nevertheless, VSED is widely resisted by healthcare practitioners either because they think that it is illegal or because they are uncertain of its legality. There has been little legal analysis of a right to VSED. In this Article, we aim to fill this gap and to clarify the legal status of VSED. Specifically, we argue that both contemporaneous and (most) non-contemporaneous decisions for VSED are legally permissible. Individuals may refuse nutrition and hydration just as they may refuse other intrusions on their personal autonomy. This right is grounded in the common law of battery, statutes, state constitutions, and even the United States Constitution. Moreover, VSED does not, as many believe, constitute abuse, neglect, or assisted suicide. Even ex ante decisions for VSED (exercised through an advance directive or a surrogate decision maker) are legal in most United States jurisdictions.

* Associate Professor of Law, Widener University School of Law; Adjunct Professor of Medical Education, Albany Medical College. A version of this Article was presented at the Thirty-third Annual ASLME Health Law Professors Conference in Austin, Texas. The authors greatly appreciate participant feedback. In addition, the authors are deeply grateful for comments and suggestions from Judith Schwarz, Lois Shepherd, Andrew Lu, Jeremy Stone, and especially Stanley Terman. ** Delaware attorney; graduate of Widener University School of Law. 363 364 Widener Law Review [Vol. 17: 363

TABLE OF CONTENTS

I. INTRODUCTION ...... 364 II. BACKGROUND: REASONS FOR HASTENING DEATH ...... 368 A. Suffering at the End of Life ...... 369 B. Five Options for Hastening Death in Order to Avoid Suffering ...... 375 C. Choosing an Exit Option from an Incomplete Menu ...... 382 III. VOLUNTARILY STOPPING EATING AND DRINKING ...... 383 A. Parameters of VSED ...... 385 B. History of VSED ...... 388 C. VSED Enables a Good Quality Death ...... 389 D. VSED Dehydration versus “Bad” Dehydration ...... 398 IV. VSED IS A LEGAL END-OF-LIFE OPTION ...... 400 A. Disallowing VSED Can Constitute a Battery ...... 402 B. Not Allowing VSED Violates the Right to Refuse Medical Treatment ...... 407 C. Allowing VSED Is Not Abuse and Neglect ...... 414 D. Allowing VSED Is Not Assisted Suicide ...... 419 V. VSED IS OFTEN AN OPTION EVEN FOR INDIVIDUALS WITHOUT CAPACITY ...... 422 A. General Rule for Substitute Decision Making ...... 423 B. Substantive and Procedural Limitations ...... 424 VI. CONCLUSION ...... 426

I. INTRODUCTION

Jane is a seventy-four-year-old woman who resides in a long-term care facility in South Australia.1 She contracted polio as a child in the 1930s, and now suffers from post polio syndrome and Type 1 diabetes.2 About ten years ago, Jane noticed a right side weakness which has deteriorated to the point where she now has no use of the limbs on the right side of her body.3 While she has some use of her left-sided limbs, movement is both extremely limited and painful.4 Jane spends all of her waking hours in a wheelchair, and when she is in bed she is unable to move or change positions.5 Because of these

1. H Ltd v J & Anor [2010] SASC 176 ¶ 1-2 (Austl.). The patient-defendant’s name was abbreviated by the court to protect her privacy. To improve readability, we call the patient “Jane” instead of “J.” 2. Id. ¶¶ 2-3. 3. Id. ¶ 3. 4. Id. 5. Id.

2011] Voluntarily Stopping Eating and Drinking 365 physical limitations, Jane requires assistance for all of her basic hygiene needs.6 There is no prospect for any improvement in her condition.7 By January 2010, Jane found her existence unbearable. She determined that she had crossed the boundary of what, for her, was a meaningful life.8 She was suffering not only physically but existentially, wracked with anguish, fear, apprehension, helplessness, despondency, dependency, and a sense of meaninglessness.9 So Jane chose a treatment option to hasten her death on her own terms.10 She “asserted a right to lawfully embark upon a course which will shorten her life free from any interference” from her long-term care provider.11 Jane was examined by both geriatric and palliative care specialists who determined that she was competent and not depressed.12 Indeed, Jane showed significant insight into her condition and explained rationally and dispassionately why she no longer wished to live.13 She made the decision to hasten her death with a “full understanding of the consequences of her decision,” after “long reflection,” and based on “the importance to her of an independent and dignified life.”14 Jane was not the paradigmatic patient seeking the right to die. She was not in an intensive care unit, dependent upon a ventilator, clinically assisted nutrition and hydration, dialysis, a pacemaker, or on any other technology that could simply be turned off.15 So to escape “a despair which she could no longer endure,” on January 19, 2010, Jane informed her long-term care facility of her intention to end her life by ceasing to take any food or water.16 To supplement these instructions, on March 4, 2010, Jane completed an advance directive instructing healthcare providers not to provide nutrition or hydration should she be in the terminal phase of an illness or in a persistent vegetative state.17 In May 2010, Jane appointed her children to be her enduring guardians, with instructions to refuse nutrition and hydration.18 Jane’s request was unusual. And her long-term care facility was unsure whether it legally could, should, or was required to comply with her contemporaneous decision or with her advance instructions.19 Consequently,

6. Id. 7. H Ltd v. J & Anor [2010] SASC 176, ¶ 3 (Austl.). 8..See BOUDEWIJN CHABOT, A HASTENED DEATH BY SELF-DENIAL OF FOOD AND DRINK 11 (2008). 9. See JAMES L. BERNAT, ETHICAL ISSUES IN NEUROLOGY 156-57 (3rd ed. 2008) (describing how patients in the end stages of a terminal illness share these similar feelings). 10. H Ltd v J & Anor [2010] SASC 176 ¶ 4 (Austl.). 11. Id. ¶ 21. 12. Id. ¶ 45. 13. Id. ¶ 45. 14. Id. ¶ 46. 15. Jane also informed her long-term care facility of her intention to cease taking insulin for her diabetic condition. Id. ¶¶ 7, 18. 16. H Ltd v J & Anor [2010] SASC 176 ¶ 4 (Austl.). 17. Id. ¶ 4. 18. Id. ¶ 5. 19. Id. ¶ 7. 366 Widener Law Review [Vol. 17: 363 the facility filed an action for declaratory relief in the Supreme Court of South Australia.20 In June 2010, that court ruled that the long-term care facility not only had no duty to feed or to hydrate Jane, but not even a right to do so against her wishes.21 The court held this was required even if not feeding or hydrating Jane would result in her death.22 If Jane wanted to die from dehydration, then her healthcare provider was not only permitted to let her do so, but was also prohibited from interfering. With the publication of this judicial opinion, the legality of Voluntarily Stopping Eating and Drinking (VSED) has been clarified and confirmed in South Australia.23 But the legality of VSED remains uncertain in the United States. Consequently, it remains an underutilized and almost underground treatment mechanism.24 Moreover, the dearth of legal direction includes not only primary but also secondary authority. Commentators have recognized this lack of analysis, noting that VSED is just “now gaining wider understanding.”25 Law professor Lois Shepherd argues that the legality of VSED is “ripe for serious consideration.”26

20. Id. ¶ 7. 21. Id. ¶ 98 22. H Ltd v J & Anor [2010] SASC 176 ¶ 98 (Austl.). Soon after the judgment, Jane stopped eating and drinking and slipped into a coma. She died peacefully four days later. Jason Om, Sounds of Summer: Angela’s Last Wish, THE WORLD TODAY (Jan. 21, 2011), http://www.abc.net.au/worldtoday/content/2011/s3118110.htm. 23. The status of VSED may also be well-settled in the Netherlands. See generally Tony Sheldon, Row Over Force Feeding of Patients with Alzheimer’s Disease, 315 BRIT. MED. J. 327 (1997). 24. See Lynn A. Jansen & Daniel P. Sulmasy, Physician Involvement in Voluntary Stopping of Eating and Drinking, 137 ANNALS INTERNAL MED. 1010, 1011 (2002) (authors’ response to claims made in a letter to the editor) (“The voluntary refusal of foods and fluids by patients who are capable of eating and drinking is not currently the standard of care in palliative medicine.”). This may be, in part, because even physicians are misinformed about the process of dying from lack of hydration and nutrition. See CHABOT, supra note 8, at 37 (“Doctors still know too little about a self-directed death by voluntary refusal of fluids because not enough attention is devoted to it . . . .”); id. at 56 (describing VSED as the “‘Cinderella’ of end-of-life research”); Judith C. Ahronheim & M. Rose Gasner, Viewpoint: The Sloganism of Starvation, 335 LANCET 278, 278 (1990). Although providers may refuse to offer or to be involved with VSED for religious or for other reasons unrelated to legal concerns, this article addresses only legal concerns that providers may have with VSED. 25. Phillip M. Kleespies et al., End-of-Life Choices, in DECISION MAKING NEAR THE END OF LIFE: ISSUES, DEVELOPMENTS, AND FUTURE DIRECTIONS 119, 126 (James L. Werth & Dean Blevins eds., 2009). See also Norman L. Cantor, On Hastening Death Without Violating Legal and Moral Prohibitions, 37 LOY. U. CHI. L.J. 407, 418 (2006) [hereinafter Cantor 2006] (“This form of self-killing is probably lawful and will probably become more and more common in America as its availability becomes more widely known.”); Timothy E. Quill, Physician-Assisted Death in the United States: Are the Existing “Last Resorts” Enough?, HASTINGS CTR. REP., Sept.-Oct. 2008, at 17, 22 (VSED “must become more standardized, available, and accountable.”); Robert Schwartz, End-of-Life Care: Doctors’ Complaints and Legal Restraints, 53 ST. LOUIS U. L.J. 1155, 1171 n.83 (2009) (noting the “ambiguity faced by physicians in this area” and observing that the status of VSED is not well established); id. at 1170 (suggesting that because certain provisions in a California bill that would specifically authorize VSED were later removed from the bill, VSED

2011] Voluntarily Stopping Eating and Drinking 367

In this article we aim to make the legal status of VSED clearer and more certain.27 We argue that legal fears and concerns regarding VSED are unfounded.28 We begin, in Part II, by placing VSED in a broader context. We examine why someone would want to hasten death in the first place. We then review five ways in which deaths can be (and are) hastened in the United States. And we show how, for some individuals, VSED offers a means for hastening death unmet by other options. In Part III, we discuss the nature of VSED. We first describe exactly what the procedure entails and sketch a quick history. Most importantly, we explain the physiological process of dehydration and review relevant clinical studies that have consistently demonstrated that VSED is a peaceful and comfortable way to die. Having established VSED as a potentially attractive option for some individuals, in Part IV we establish the legality of VSED. We first ground a right to VSED in common law torts. If someone refuses food and water, to force it upon him or her would constitute a battery. A right to VSED can also be grounded in a patient’s common law, statutory, or constitutional right to refuse medical treatment. After making the affirmative case for a right to VSED, we make arguments refuting allegations that VSED constitutes abuse, neglect, or assisted suicide. Throughout most of this article, we assume that our subject is a competent patient making a contemporaneous decision to VSED. But in Part V, we briefly examine the legality of VSED in situations in which the decision to VSED is made in an advance directive or by a surrogate. Here, when choosing VSED through an exercise of prospective autonomy, there are substantially more hurdles. Indeed, in some jurisdictions, this choice is barred

“remain[s] in legal limbo”). Cf. FRIENDS AT THE END, ONE WAY TO DIE: STOPPING EATING AND DRINKING 4 (2009) (“[T]his may be a difficult matter for your doctor . . . . She may feel that she is at some legal risk if she helps you.”); ALANA IGLEWICZ ET AL., VOLUNTARILY STOPPING ORAL INTAKE: SUICIDE VERSUS SELF-DETERMINATION? (2009), available at http://www.palliativemed.org/files/a-1221192-1260993670.pdf (Poster presented at the American Association of Geriatric Psychiatry Annual Meeting in March 2009) (“There is a clear dearth of literature guiding clinicians in their evaluation and treatment of patients who choose to hasten their death by declining oral intake.”). 26. Lois Shepherd, Heroes, Lawyers, and Writers–A Review of Two Schiavo Books, 31 NOVA L. REV. 315, 324 (2007). See also Lois Shepherd, Terri Schiavo: Unsettling the Settled, 37 LOY. U. CHI. L.J. 297, 339 (2006) [hereinafter Shepherd 2006] (“Further consideration of the issue of feeding . . . by hand, is necessary . . . .”). 27. Norman L. Cantor & George C. Thomas III, The Legal Bounds of Physician Conduct Hastening Death, 48 BUFF. L. REV. 83, 86 (“Clinicians deserve clarification of the scope of currently permissible practices . . . .”). 28. Some clinicians have written that “[t]he most pressing need is to dispel the myths about suffering” and VSED. James L. Bernat et al., Patient Refusal of Hydration and Nutrition: An Alternative to Physician-Assisted Suicide or Voluntary Active Euthanasia, 153 ARCHIVES INTERNAL MED. 2723, 2727 (1993). To the extent that VSED is thought to be clinically appropriate but illegal, the mission of this article is to dispel those myths. Cf. Alan Meisel et al., Seven Legal Barriers to End-of-Life Care: Myths, Realities, and Grains of Truth, 284 JAMA 2495, 2496-97 (2000). See generally Alan Meisel, Legal Myths About Terminating Life Support, 151 ARCHIVES INTERNAL MED. 1497 (1991). 368 Widener Law Review [Vol. 17: 363 by explicit and direct statutory prohibitions. But even “advance VSED” is legal in most parts of the United States. We conclude that healthcare providers’ concerns regarding the legality of VSED are misplaced. Providers not only may but also should honor appropriate patient requests for VSED. Furthermore, providers should educate patients that VSED is an available treatment alternative. Informed consent requires more than just acceding to a decision to refuse treatment. It also requires making patients aware of their end-of-life options.29 The situation is less clear when the VSED request is made by a surrogate instead of by the patient herself. But in many jurisdictions such a decision has the same status as a contemporaneous decision made by a patient with capacity.30 Still, we recognize the limits of education to address providers’ “bad law” claims.31 Law review articles may be insufficient to dispel the myth of illegality. Consequently, legislators and regulators should clarify the safe harbor protections afforded to health care providers.

II. BACKGROUND: REASONS FOR HASTENING DEATH

Before turning to a factual description and legal analysis of VSED, it is important to examine why someone might want to hasten death in the first place. There are many circumstances under which a longer life is not a better life. When quality of life diminishes, some individuals would prefer to hasten death (or at least not prolong dying) rather than endure the perils of what, at least to them, is an exceedingly poor quality of life.32 What exactly comprises a

29. See, e.g., Assemb. B. 2747, 2007-2008 Leg., Reg. Sess. (Cal. 2008), codified at CAL. HEALTH & SAFETY CODE § 442.5 (West 2010); H.B. 435, 2009-2010 Leg., 70th Sess. (Vt. 2009) (Patients’ Bill of Rights for Palliative Care and Pain Management), enacted as 2009 Vt. Acts & Resolves 159 (codified at VT. STAT. ANN. tit. 18, § 1871 (2009)); S.B. 4498, 2009-2010 Leg., Reg. Sess. (N.Y. 2009) (codified at N.Y. PUB. HEALTH LAW § 2997-c (McKinney 2007); S.B. 1311, 49th Leg., Reg. Sess. (Ariz. 2009); S.B. 1447, 50th Leg., Reg. Sess. (Ariz. 2010). 30. In these jurisdictions, there may be some limitations to a surrogate making a decision to VSED. See Charles P. Sabatino, The Evolution of Health Care Advance Planning Law and Policy, 88 MILBANK Q. 211, 221 (2010) (stating that “a dozen states . . . require a diagnostic precondition before an agent [or surrogate] may forgo life-sustaining procedures”); Thaddeus Mason Pope, Comparing the FHCDA to Surrogate Decision Making Laws in Other States, 16 N.Y. STATE BAR ASS’N HEALTH L.J. (forthcoming 2011). 31. See Sandra H. Johnson, Regulating Physician Behavior: Taking Doctors’ ‘‘Bad Law’’ Claims Seriously, 53 ST. LOUIS U. L.J. 973, 1009-15 (2009) (examining how education may be insufficient to decrease physicians’ fear of the legal consequences regarding certain treatments). 32. See Janet L. Abrahm, Patient and Family Requests for Hastened Death, HEMATOLOGY, Jan. 2008, at 475, 475 (“Patient and family requests for hastened death are not uncommon among patients with advanced malignancies.”); Linda Ganzini et al., Oregonians’ Reasons for Requesting Physician Aid in Dying, 169 ARCHIVES INTERNAL MED. 489, 489 (“One in 10 dying patients will, at some point, wish to hasten death.”) (citation omitted); Jean-Jacques Georges et al., Requests to Forgo Potentially Life-Prolonging Treatment and to Hasten Death in Terminally Ill Cancer Patients: A Prospective Study, 31 J. PAIN & SYMPTOM MGMT. 100, 104 (2006); J. McCarthy et al., Irish Views on Death and Dying: A National Survey, 36 J. MED. ETHICS 454, 456 (2010) (finding that

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“poor quality of life” covers a broad spectrum that varies significantly from person to person. For some, loss of independence might diminish quality of life to the point where they would request a hastened death. For others, it may be extreme physical suffering. For these and other reasons, requests to hasten death are common throughout the United States and the world.33 As Justice Brennan observed, “[f]or many, the thought of an ignoble end, steeped in decay, is abhorrent.”34 The following subsections discuss some key reasons for wanting to hasten death and the medical means35 by which it can be done in the United States. First, we discuss end-of-life suffering and the predicaments associated with common diseases and medical conditions that cause the most deaths in this country. Second, we offer a full list of recognized “exit options” or “last resorts” for those who do choose to hasten death: (1) refusal of life-sustaining medical treatment; (2) palliative sedation to unconsciousness; (3) administration of high dose opioids; (4) physician assisted suicide; and (5) voluntary active euthanasia. Third, we demonstrate that there are some people who, for clinical, practical, or legal reasons, are ineligible for any of these five options. It is primarily for these people that we explore VSED as a sixth exit option.

A. Suffering at the End of Life

Many people do not fear death, but rather dying.36 Dying is a process that many associate with severe pain, embarrassment, prolonged hospital stays, and burdens on family and friends. Perhaps the worst problem and greatest fear when a person considers the end of life is the fear that suffering will be uncontrollable and independence will be lost.37 Uncontrollable suffering could a majority of individuals strongly agreed with the statement, “If I were severely ill with no hope of recovery, the quality of my life would be more important than how long it lasted.”); Diane E. Meier et al., A National Survey of Physician-Assisted Suicide and Euthanasia in the United States, 338 NEW ENG. J. MED. 1193, 1195 (1998). 33. See supra note 32. 34. Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261, 310 (1990) (Brennan, J., dissenting). 35. The individuals who seek to hasten death are often dependent upon healthcare providers in a long-term care facility or are afflicted with a condition under medical management. Moreover, many people want the assistance or supervision of healthcare providers to assure that any death hastening is appropriate, effective, and pain-free. See MARCA BRISTO, NAT’L COUNCIL ON DISABILITY, ASSISTED SUICIDE: A DISABILITY PERSPECTIVE, available at http://www.ncd.gov/newsroom/publications/1997/suicide.htm. 36. Cf. Timothy E. Quill & Ira R. Byock, Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids, 132 ANNALS INTERNAL MED. 408, 412 (2000) (arguing that informing patients of VSED is probably appropriate when “patients express fears about dying badly”). 37. See Georges et al., supra note 32, at 104 (listing hopeless suffering, general weakness, loss of dignity, meaningless suffering, and loss of control as the most important reasons that patients request to forgo treatment or to hasten death). See also Fran Moreland Johns, An October Morning, in THE BEST WAY TO SAY GOODBYE: A LEGAL PEACEFUL CHOICE AT 370 Widener Law Review [Vol. 17: 363 encompass, among other things: physical pain, weakness, loss of dignity and independence, reliance on medical technology, and an inability to communicate or process information.38 People at the end of life suffer in these ways as well as in many others.39 A suffering patient is likely in one or more of three basic scenarios: (1) the patient has control over cognition but is in pain; (2) the patient has control over cognition but is paralyzed or severely physically debilitated; and/or (3) the patient’s body functions healthily, but his mind does not. Any of these situations may cause additional pain, suffering, and loss of dignity at the end of life. “While good palliative care is a great boon, it is not a panacea,” and it cannot, and does not, alter the will of some patients who, nonetheless, wish to die.40

1. Hastening Death to Avoid Physical Pain

Many illnesses and injuries are marked by excruciating physical pain.41 The cases are legion. Those several cases that we have the space to describe here

THE END OF LIFE 77, 77 (Stanley A. Terman ed. 2007) (“The thought of dying didn’t bother Mary Evelyn in the least. It was all those peripheral issues: the crippling osteoporosis, the near- blindness, the heart failure that had left her almost immobilized, the constant pain, and the frustration that no symptom ever got better.”). 38. Cf. Linda Ganzini et al., Nurses’ Experiences with Hospice Patients Who Refuse Food and Fluids to Hasten Death, 349 NEW. ENG. J. MED. 359, 360 (also identifying “hopelessness, depression, feeling unappreciated, a sense of the meaninglessness of continued existence, [and] readiness to die”); id. at 362 (ranking twenty-one reasons that patients chose to hasten death). Physical symptoms include pain, nausea, diarrhea, dyspnea, paralysis, pressure ulcers, and edema. Psychological symptoms include depression, anxiety, and delirium. Existential symptoms include meaningless of life, loss of control over self-care, loss of social role, becoming a burden or nuisance to others, and hopelessness. See Mohamed Y. Rady & Joseph L. Verheijde, Continuous Deep Sedation Until Death: Palliation or Physician-Assisted Death?, 27 AM. J. HOSPICE & PALLIATIVE MED. 205, 206 (2010). 39. See Timothy E. Quill et al., Palliative Options of Last Resort: A Comparison of Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-Assisted Suicide, and Voluntary Active Euthanasia, in GIVING DEATH A HELPING HAND: PHYSICIAN-ASSISTED SUICIDE AND PUBLIC POLICY. AN INTERNATIONAL PERSPECTIVE 49, 49 (Dieter Birnbacher & Edgar Dahl eds., 2008) [hereinafter Quill et al., Palliative Options]. 40. Cantor 2006, supra note 25, at 429. See also Timothy E. Quill et al., Last-Resort Options for Palliative Sedation, 151 ANNALS INTERNAL MED. 421, 421 (2009) [hereinafter Quill et al., Last-Resort Options] (“Despite substantial advances in the delivery of palliative care and hospice, some dying patients still experience severe suffering that is refractory to state-of-the-art palliative care.”) (footnotes omitted); Quill et al., Palliative Options, supra note 39, at 49 (“[E]ven the highest-quality palliative care fails or becomes unacceptable for some patients, some of whom request help hastening death.”); Judith Schwarz, Exploring the Option of Voluntarily Stopping Eating and Drinking Within the Context of a Suffering Patient’s Request for a Hastened Death, 10 J. PALLIATIVE MED. 1288, 1288 (2007) [hereinafter Schwarz 2007] (“[A] persistent proportion of dying patients . . . continue to suffer intolerably in the last weeks of life despite the best palliative care.”) (footnotes omitted). 41. “End-stage disease is often accompanied by severe pain and other unpleasant symptoms that cause undue suffering.” AM. SOC’Y FOR PAIN MGMT. NURSING, ASPMN Position

2011] Voluntarily Stopping Eating and Drinking 371 are only illustrative, not exhaustive, of the types of physical conditions and motivations for hastening death. Perhaps the most famous case of a patient seeking to hasten his death to avoid pain is that of Donald “Dax” Cowart. In 1973, Dax was twenty-five years old when he became victim to a devastating gas line explosion that caused severe burns to over sixty-five percent of his body.42 Moments after the explosion, Dax was in so much pain that he asked the man who rescued him for a gun so that he could take his own life. That man declined.43 When Dax was later taken to the hospital by paramedics, he was forced to endure months of excruciatingly painful treatments for his burns, including being bathed in bleach.44 He lost all of his fingers and became blind in both eyes.45 Having the capacity to make healthcare decisions, Dax attempted to refuse treatment the entire time, because he believed that death would be far superior to his very painful existence, which he described as feeling like he was being “skinned alive” every single day.46 In 1991, Dr. Timothy Quill famously described Diane, a patient of his who refused treatment for leukemia because she wished to live the remainder of her life at home with friends and family rather than undergoing painful treatments that only had a twenty-five percent chance of success.47 Eventually, when her quality of life diminished to the point where continuing to live would make her lose her dignity, she said goodbye to her family and ingested a lethal dose of barbiturates.48 Dr. Quill noted that the patient was an independent person who liked to be in control of her own life.49 When “[b]one pain, weakness, fatigue, and fevers began to dominate her life” she decided to end her life to avoid the inevitable “increasing discomfort, dependence, and hard choices between pain and sedation.”50

Statement on Pain Management at the End of Life (2003), http://aspmn.org/Organization/ documents/EndofLifeCare.pdf. See also GEOFFREY HANKS ET AL., OXFORD TEXTBOOK OF PALLIATIVE MEDICINE 3.1 (4th ed. 2010). 42. See generally NYU SCHOOL OF MED., Film/Video/TV Annotations, Please Let Me Die (1974), http://litmed.med.nyu.edu/Annotation?action=view&annid=10105; NYU SCHOOL OF MED., Film/Video/TV Annotations, DAX’S CASE (1985), http://litmed.med.nyu.edu/ Annotation?action=view&annid=10114; ROBERT CAVALIER & PRESTON K. COVEY, A RIGHT TO DIE? THE DAX COWART CASE 1 (1996). 43. Keith Burton, A Chronicle: Dax’s Case as It Happened, in DAX’S CASE: ESSAYS IN MEDICAL ETHICS AND HUMAN MEANING 1, 4 (Lonnie D. Kliever ed. 1989); 44. See id. at 5. 45. Id. at 5, 9. 46. Dax’s Story: A Severely Burned Man’s Thirty-Year Odyssey, UVA NEWSMAKERS (Oct. 2, 2002), http://www.virginia.edu/uvanewsmakers/newsmakers/cowart.html. Unfortunately, Dax’s requests to stop treatment to hasten his death were continually denied, and he was forced, against his will, to endure the pain. See Burton, supra note 43, at 1-9; Robert B. White, A Memoir: Dax’s Case Twelve Years Later, in DAX’S CASE, supra note 43, at 13, 13. 47. Timothy E. Quill, Death and Dignity: A Case of Individualized Decision Making, 324 NEW ENG. J. MED. 691, 692 (1991). 48. Id. at 693. 49. Id. at 692. 50. Id. at 693. 372 Widener Law Review [Vol. 17: 363

2. Hastening Death Due to Loss of Function

Often, in addition to or instead of pain, patients are motivated to hasten death because of a loss of bodily functions, resulting in a loss of independence and control.51 Many right-to-die cases have been brought by individuals who were quadriplegic,52 or by individuals who had amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease or motor neuron disease)53 and were approaching a state of total paralysis.54 Recently, stockbroker Christian Rossiter became a quadriplegic after a series of accidents.55 He was badly injured after a nearly 100-foot fall from a building in 1988. Then, in 2008, he was struck by an automobile while cycling. Before the accidents, Rossiter was an active sportsman who enjoyed keen bushwalking, rock climbing and cycling.56 After the automobile accident, Rossiter found himself in a nursing home fed through a tube in his stomach.57 Although he could live for an indefinite amount of time, his quality of life was incredibly diminished due to his dependence on institutions, his lack of family support, and his inability to move.58 He described his life as a “living hell.”59

51. In Oregon, the most frequently mentioned concerns motivating use of the Death with Dignity Act were “loss of autonomy . . . , loss of dignity . . . , and decreasing ability to participate in activities that made life enjoyable.” OR. DEP’T OF HUMAN SERVICES, 2009 SUMMARY OF OREGON’S DEATH WITH DIGNITY ACT, available at http://oregon.gov /DHS/ph/pas/docs/year12.pdf. 52. See Bouvia v. Sup. Ct., 225 Cal. Rptr. 297, 299 (Ct. App. 1986) (granting petition to stop feeding); State v. McAfee, 385 S.E.2d 651, 651-52 (Ga. 1989) (granting petition to disconnect ventilator); McKay v. Bergstedt, 801 P.2d 617, 619, 632 (Nev. 1990) (granting permission to disconnect ventilator); G. Andrew Kirkpatrick, Rodas v. ErkenBrack, 2 ISSUES L. & MED. 481, 481 (1987) (discussing Rodas v. ErkenBrack, a case heard in Colorado’s Mesa County District Court, where the court granted petitioner’s request to discontinue feeding through a gastrostomy tube); Margot Dougherty & Sandra Rubin Tessler, Tiring of Life Without Freedom, Quadriplegic David Rivlin Chooses to Die Among Friends, PEOPLE, Aug. 7, 1989, at 56, available at http://www.people.com/people/archive/article/0,,20120912,00.html. Interestingly, many quadriplegic individuals who seek and even secure the right to die do not actually proceed to hasten their death. See, e.g., Annemarie Evans, Hong Kong Euthanasia Plea Man Goes Home, BBC NEWS (Aug. 19, 2010, 11:32 PM), http://www.bbc.co.uk/news/world-asia-pacific-11033789 (reporting on Tang Siu-pun’s change of mind). 53. See Satz v. Perlmutter, 362 So. 2d 160, 161 (Fla. Dist. Ct. App. 1978); In re Farrell, 529 A.2d 404, 407 (N.J. 1987); Leach v. Akron Gen. Med. Ctr., 426 N.E.2d 809, 810 (Ohio Ct. Com. Pl. 1980); In re Doe, 45 Pa. D. & C.3d 371, 371 (Pa. Ct. Com. Pl. 1987). Cf. Leo McCluskey, Amyotrophic Lateral Sclerosis: Ethical Issues from Diagnosis to End of Life, 22 NEUROREHABILITATION 463, 465-67 (2007) (discussing end-of-life options). 54. This sort of situation has been popularly depicted in widely released films. See MILLION DOLLAR BABY (Warner Bros. 2004); THE SWITCH (Direct Source Label 1992); WHOSE LIFE IS IT ANYWAY? (Metro-Goldwyn-Mayer 1981). 55. Brightwater Care Group, Inc. v Rossiter [2009] WASC 229 ¶ 6 (Austl.). 56. Australian Man Given the Right to Die, MIBBA.COM (Aug. 15, 2009), http://news.mibba.com/World/2903/Australian-Man-Given-the-Right-to-Die. 57. Brightwater Care Group, Inc. v Rossiter [2009] WASC 229 ¶ 8 (Austl.). 58. Id. ¶ 9-10.

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He told reporters, “‘I'm Christian Rossiter and I'd like to die . . . . I am a prisoner in my own body. I can't move . . . [or even] wipe the tears from my eyes.’”60 Another more famous case is that of Elizabeth Bouvia. Bouvia was a twenty-eight-year-old quadriplegic with severe cerebral palsy.61 She was mentally capable, but physically she was severely disabled.62 She was in continual pain due to arthritis.63 Bouvia was institutionalized and totally dependent upon others for all her needs.64 In particular, she had to be spoon fed.65 When Bouvia determined that life was no longer worth living, she refused to eat.66 “In Elizabeth Bouvia’s view, the quality of her life [had] been diminished to the point of hopelessness, uselessness, unenjoyability and frustration.”67 Because she was “not consuming a sufficient amount” and because of a “previously announced resolve to starve herself,” the hospital fed her against her will.68 But the California Court of Appeal ordered the hospital to respect Bouvia’s wishes.69

3. Hastening Death to Avoid Severe Dementia

While some illnesses and injuries affect the body, others affect the mind.70 They leave people with an inability to recognize family and friends.71 In this

59. Richard Shears, Quadriplegic Man Wins Legal Right to Starve Himself to Death While Watching TV, DAILYMAIL.CO.UK (Aug. 14, 2009), http://www.dailymail.co.uk/news/ worldnews/article-1206522/Quadriplegic-man-wins-legal-right-to-starve-death-watching- TV.html#. 60. Id. This was Rossiter’s own assessment of his own life. As with all the cases in this section, the authors do not assert or defend any position regarding the appropriate treatment choices for any individual. The point is that some individuals, based on their own values and preferences, make an informed and deliberate decision to hasten death. Others make different choices. Quadriplegic Steven Fletcher, for example, has served in the Canadian Parliament since 2004. LINDA MCINTOSH, WHAT DO YOU DO IF YOU DON’T DIE? THE STEVEN FLETCHER STORY (2008). See also Carma Wadley, Disabled Author Chooses to Laugh, DESERET NEWS (Oct. 10, 2010), http://www.deseretnews.com/article/700072669/Disabled-author-chooses-to- laugh.html (after a surfing accident left him a quadriplegic, Jack Rushton became a religious leader and educator.). 61. Bouvia v. Sup. Ct., 225 Cal. Rptr. 297, 299 (Ct. App. 1986). We acknowledge that Bouvia is a troubling case from a disability perspective. See generally PAUL K. LONGMORE, WHY I BURNED MY BOOK AND OTHER ESSAYS ON DISABILITY 149-74 (2003). 62. Bouvia, 225 Cal. Rptr. at 300. 63. Id. 64. Id. 65. Id. 66. Id. 67. Id. at 304. 68. Bouvia, 225 Cal. Rptr. at 300. 69. Id. at 307. 70. We examine VSED as a means to avoid severe dementia separately, in Part V, infra. 71. NANCY L. MACE & PETER V. RABINS, THE 36-HOUR DAY: A FAMILY GUIDE TO CARING FOR PEOPLE WITH ALZHEIMER DISEASE, OTHER DEMENTIAS, AND MEMORY LOSS IN 374 Widener Law Review [Vol. 17: 363 third group are persons suffering from Alzheimer’s, Huntington’s, Parkinson’s, or other forms of severe dementia.72 Often, people in these predicaments prefer to hasten the dying process rather than to prolong it because quality of life is greatly diminished and will inevitably only further deteriorate.73 Take, for example, the case of Judge Robert I.H. Hammerman. In 1998, upon reaching the mandatory retirement age of seventy, Judge Hammerman left the Baltimore, Maryland bench on which he had served for over forty years.74 Five years later, in July 2003, Judge Hammerman discovered that he was suffering from the onslaught of dementia, observing: “Alzheimer’s has attacked me.”75 This distressed him greatly:

For one who all of his life has enjoyed an exceptional memory, it has seen degeneration at a quicker and quicker pace for two or three years or so. . . . This has been embarrassing and difficult to deal with in all aspects of my life. The most common thingsevery dayI find great difficulty with. . . . What particularly grieves me is the loss of memory. . . . The simplest tasks are now becoming more and more difficult to do. Confusion is my daily companion. . . . The thought of Alzheimer’s is dreadful to me. I’d need institutionalization. . . . The awareness that I could become disabled that would require me to be shipped out to assisted living or worse . . . I could not accept.76

Judge Hammerman carefully deliberated for sixteen months before finally committing suicide in November 2004.77 He concluded that living with severe dementia would be “breathing, not really living.”78

LATER LIFE 157-58 (4th ed. 2006). Dementia indicates problems with at least two brain functions, such as memory, speech, coordination, or sense of time. 72. See id. at 20-43. 73. See LADISLAV VOLICER, END-OF-LIFE CARE FOR PEOPLE WITH DEMENTIA IN RESIDENTIAL CARE SETTINGS 2, 6 (2005), available at http://www.alz.org/national/ documents/endoflifelitreview.pdf (stating that “[a]ggressive medical treatment for residents with advanced dementia is often inappropriate for medical reasons [and] has a low rate of success” and that “advanced dementia is often not perceived as a terminal illness,” inferring that although one could conceivably live many years with dementia, medical treatment will likely not improve a patient’s condition). 74. Allison Klein, Despite Detailed Letter, Judge's Suicide Baffling, WASH. POST, Nov. 15, 2004, at B01, available at http://www.washingtonpost.com/wp-dyn/articles/A49813- 2004Nov14.html. 75. STANLEY A. TERMAN, THE BEST WAY TO SAY GOODBYE: A LEGAL PEACEFUL CHOICE AT THE END OF LIFE 324 (2007). 76. Id. at 324-25 (emphasis omitted). 77. Id. at 324. 78. Id. at 325.

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4. Summary

Many seriously ill patients find their lives marked with extreme suffering and both physical and mental deterioration. Unfortunately, many do not have (or perceive that they do not have) access to a medically-supervised, peaceful death like Diane or Christian Rossiter. Too many patients commit suicide through violent means such as shooting, hanging, or various other forms of self-deliverance.79 Moreover, being uncertain about their future options and being worried about future loss of dignity, comfort, and control, many patients die prematurely. VSED provides an alternative: the assurance that they can die when they want based on their own criteria and can enjoy life for a longer period of time.80 Certainly, life is valuable; and societal values reinforce attempting to extend life indefinitely. But death is unavoidable. People suffering from the diseases that cause the majority of deaths in this country will often experience significant suffering and loss of independence.81 In this situation, the preference, for some, may be to hasten death so that death can be on an individual’s terms and with some predictability, rather than risking the unknown and potential loss of comfort and dignity.82

B. Five Options for Hastening Death in Order to Avoid Suffering

Fortunately, for those who can no longer bear living with their physical or mental impairments, there are five options by which they can hasten death to avoid suffering. First, if dependent upon life-sustaining medical treatment such as a ventilator or artificial hydration, patients can simply refuse that treatment either before or during its administration. Second, for those with intense physical pain, high dose opioids to treat the pain can hasten death. Third, for terminally ill patients with intractable physical (and/or perhaps existential) suffering, they can be sedated to unconsciousness. This makes the patient dependent upon artificial nutrition and hydration which can be refused (per option 1). Fourth, for terminally ill patients in some states, where assisted suicide is legal, they can get a lethal dose of barbiturates. Fifth, there is voluntary active euthanasia, in which the physician instead of the patient takes the final overt step causing death.

1. Refusing Life-Sustaining Medical Treatment

Modern advances in science and medicine have made possible the prolongation of the lives of many seriously ill individuals, without always

79. Matthew Miller et al., Cancer and the Risk of Suicide in Older Americans, 26 J. CLINICAL ONCOLOGY 4720, 4722 (2008); Peter M. Marzuk, Suicide and Terminal Illness, 18 DEATH STUDIES 497, 500 (1994). 80. See TERMAN, supra note 75, at 326. 81. Judith K. Schwarz, Stopping Eating and Drinking, AM. J. NURSING, Sept. 2009, at 53, 54. 82. Quill et al., Palliative Options, supra note 39, at 49. 376 Widener Law Review [Vol. 17: 363 offering realistic prospects for improvement or cure.83 “Half-way” technologies, such as mechanical ventilation and artificial nutrition and hydration, can sustain biological life for practically indefinite periods of time but cannot themselves lead to improvement or cure.84 As a consequence of the availability of these life-sustaining technologies, most deaths in America occur in an institutional setting such as a hospital.85 And most of these institutional deaths are the result of an intentional, deliberate decision to stop life-sustaining medical treatment and allow death.86 “Death is a negotiated event; it happens by design. . . . 70% of the 1.3 million Americans who die in health care institutions [each year] do so after a decision has been made and implemented to forgo some or all forms of medical treatment.”87 In the United States, people have the legal right to refuse medical treatment, even if such treatment is necessary to sustain life.88 These life-sustaining interventions include ventilators, dialysis, feeding tubes, and even ventricular- assist devices.89 This right is well-recognized in American jurisprudence. It stems from the common-law principle that any unwanted touching is a

83. See generally WILLIAM H. COLBY, UNPLUGGED: RECLAIMING OUR RIGHT TO DIE IN AMERICA 57-71 (2006) (discussing the ascent of medical technology); JOHN D. LANTOS & WILLIAM L. MEADOW, NEONATAL BIOETHICS: THE MORAL CHALLENGES OF MEDICAL INNOVATION 18-52 (2006) (discussing the era of scientific innovation with regard to medicine). 84. John Lantos, When Parents Request Seemingly Futile Treatment for Their Children, 73 MOUNT SINAI J. MED. 587, 588 (2006); Gay Moldow et al., Why Address Medical Futility Now?, MINN. MED., June 2004, at 38, 38. 85. See Thomas Wm. Mayo, Living and Dying in a Post-Schiavo World, 38 J. HEALTH L. 587, 587-88 (2005) (citing S. 570, 109th Cong. § 2(a)(1) (2005)). 86. See Arthur E. Kopelman, Understanding, Avoiding, and Resolving End-of-Life Conflicts in the NICU, 73 MOUNT SINAI J. MED. 580, 580 (2006) (“Eighty percent of the deaths that occur in the neonatal intensive care unit (NICU) are preceded by decisions to limit, withhold, or withdraw life support . . . .”); Alan Meisel & Bruce Jennings, Ethics, End-of-Life Care, and the Law: Overview, in LIVING WITH GRIEF: ETHICAL DILEMMAS AT THE END OF LIFE 63, 63 (Kenneth J. Doka et al. eds., 2005) (“Today, decisions on whether or not to forgo ‘artificial’ life-sustaining interventions must be made more intentionally, openly, and with appropriate deliberation, consultation, and accountability.”); Edmund D. Pellegrino, Decisions at the End of Life – The Abuse of the Concept of Futility, PRACTICAL BIOETHICS, Summer 2005, at 3, 3 (“[T]he majority of patients in modern hospitals today die as a result of a deliberate decision to withhold or withdraw treatment.”); Thomas J. Prendergast & John M. Luce, Increasing Incidence of Withholding and Withdrawal of Life Support from the Critically Ill, 155 AM. J. RESPIRATORY & CRITICAL CARE MED. 15, 15 (1997) (“[M]ost patients and surrogates accept an appropriate recommendation to withhold or withdraw life support . . . .”). 87. Nancy Dubler, Limiting Technology in the Process of Negotiating Death, 1 YALE J. HEALTH POL'Y L. & ETHICS 297, 297 (2001) (reviewing MANAGING DEATH IN THE INTENSIVE CARE UNIT: THE TRANSITION FROM CURE TO COMFORT (J. Randall Curtis & Gordon D. Rubenfeld eds., 2001)) (endnote omitted). See also COLBY, supra note 83, at 95-108 (discussing how we die in America today); Thomas J. Prendergast et al., A National Survey of End-of-Life Care for Critically Ill Patients, 158 AM. J. RESPIRATORY & CRITICAL CARE MED. 1163, 1163, 1165 (1998) (stating that many patients choose to withhold or withdraw life support). 88. See ALAN MEISEL & KATHY L. CERMINARA, THE RIGHT TO DIE: THE LAW OF END-OF-LIFE DECISIONMAKING 2-4 – 2-5 (3d ed. Supp. 2010). 89. See Quill, supra note 25, at 19.

2011] Voluntarily Stopping Eating and Drinking 377 battery.90 It also derives from state statutes and state constitutions.91 This right has even arguably been read into the United States Constitution as a liberty interest in the right of privacy and consequently, the right to be free from bodily intrusion.92 Patients with capacity, i.e. the ability both to understand the risks and benefits of treatment and to use reasoning to make a decision, can refuse life-sustaining medical treatment at any time.93

2. High Dose Opioids

Another option for terminally ill patients94 who are in intense physical pain is the liberal administration by medical providers of opioids, a class of medication that is widely accepted in the medical community for pain relief.95 In dying patients, opioids, when given in high doses, can be very effective for relief of otherwise uncontrollable pain.96 Palliative care physicians will usually administer opioids to the extent that they are necessary to relieve pain.97 When pain is extreme, the amount necessary may be a very high dose.98 This can cause death by respiratory distress or other effects of the medication.99

90. See Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261, 269 (1990) (“At common law, even the touching of one person by another without consent . . . was a battery.”); id. at 305 (Brennan, J., dissenting) (“The right to be free from medical attention without consent . . . is deeply rooted in this Nation’s traditions . . . . This right . . . is securely grounded in the earliest common law.”) (citations omitted). The right to refuse is a corollary of the patient’s right to bodily integrity and informed consent. See Canterbury v. Spence, 464 F.2d 772, 780 (D.C. Cir. 1972) (stating that a fundamental concept in American jurisprudence is that every human has the right to decide what will happen to his or her own body). Since the birth of bioethics in the early 1970s, the right of the patient to be the primary decision maker in decisions regarding her own health care has been valued and protected. See Thaddeus Mason Pope, Surrogate Selection: An Increasingly Viable, but Limited, Solution to Intractable Futility Disputes, 2 ST. LOUIS U. J. HEALTH L. & POL’Y 183, 205 (2010) [hereinafter Pope 2010]. 91. See MEISEL & CERMINARA, supra note 88, at 2-31. 92. Cruzan, 497 U.S. at 287-89 (O’Connor, J., concurring); Washington v. Glucksberg, 521 U.S. 702, 720 (1997) (observing that the court “strongly suggested” the existence of a constitutional right in Cruzan); Vacco v. Quill, 521 U.S. 793, 807 (1997). But see Glucksberg, 521 U.S. at 725 (clarifying that the right in Cruzan was assumed for the purpose of constitutional analysis and since the state had a compelling interest, there was not need to reach the question). 93. To have capacity, a patient would need to substantially understand and appreciate his or her medical condition. This includes an appreciation for available treatments versus non- treatment, the risks and benefits of each, and the treating physician’s professional opinion about how to proceed. THE MERCK MANUAL OF DIAGNOSIS AND THERAPY 2771 (Mark H. Beers et al. eds., 18th ed. 2006); Paul S. Appelbaum, Assessment of Patients’ Competence to Consent to Treatment, 357 NEW ENG. J. MED. 1834, 1834 (2007). 94. “Terminally ill” is typically defined as having a medical prognosis with a life expectancy of six months or less. See 42 U.S.C. § 1395x(dd)(3)(A) (2006); OR. REV. STAT. § 127.800(12) (2007). 95. See Quill, supra note 25, at 18-19; Schwarz, supra note 81, at 57. 96. See Quill, supra note 25, at 18-19. 97. See Timothy E. Quill, Principle of Double Effect and End-of-Life Pain Management: Additional Myths and a Limited Role, 1 J. PALLIATIVE MED. 333, 334 (1998) [hereinafter Quill 1998]. 98. See id. 99. See id.; see also Cantor & Thomas, supra note 27, at 110. 378 Widener Law Review [Vol. 17: 363

Nevertheless, administering high doses of opioids is legal because the primary intent is to relieve pain, not specifically to cause death.100 Although there is no specific evidence showing that high dose opioids actually cause or hasten death, there is a widespread belief in the medical community that death could be a “double effect” of high dose opioids.101 The double effect doctrine proposes that administering these drugs is legitimate because it accomplishes the intended goal of pain relief, even though it may also (unintentionally and coincidentally) cause or contribute to the unintended consequence of death.102 Unfortunately, this approach has limitations. First, the drugs may cause side effects, such as nausea and muscle twitching, that are intense and distressing.103 Second, and more significantly, the administration of high dose opioids is only available to people who are in extreme pain that cannot be controlled in any other way.104 Therefore, this option is unavailable to those whose physical pain is under control.

3. Palliative Sedation to Unconsciousness

If a person is terminally ill, suffering, and at the very end stages of life, palliative sedation to unconsciousness (PSU) may be a treatment option to hasten death.105 The National Hospice and Palliative Care Organization defines PSU as “the lowering of patient consciousness using medications for the express purpose of limiting patient awareness of suffering that is intractable and intolerable.”106 With ordinary sedation, the goal is relief of suffering without reducing the patient’s level of consciousness.107 But even high doses

100. See Vacco v. Quill, 521 U.S. 793, 807, 808 n.11 (1997). “It is widely recognized that the provision of pain medication is ethically and professionally acceptable even when the treatment may hasten the patient’s death, if the medication is intended to alleviate pain and severe discomfort, not to cause death.” Id. (quoting NEW YORK STATE TASK FORCE ON LIFE AND THE LAW, WHEN DEATH IS SOUGHT: ASSISTED SUICIDE AND EUTHANASIA IN THE MEDICAL CONTEXT 163 (1994)); see also Washington v. Glucksberg 521 U.S. 702, 737-38 (1997) (O’Connor, J., concurring) (“There is no dispute that dying patients . . . can obtain palliative care, even when doing so would hasten their deaths.”); Schwarz, supra note 81, at 57; Quill 1998, supra note 97, at 334. 101. See Schwarz, supra note 81, at 56; Quill 1998, supra note 97, at 333. 102. See Schwarz, supra note 81, at 56-57. Unfortunately, because of aggressive enforcement, providers may be chilled from prescribing adequate pain care. See generally Diane E. Hoffmann, Treating Pain v. Reducing Drug Diversion and Abuse: Recalibrating the Balance in Our Drug Control Laws and Policies, 1 ST. LOUIS U. J. HEALTH L. & POL’Y 231 (2008). 103. See Jeffrey T. Berger, Rethinking Guidelines for the Use of Palliative Sedation, HASTINGS CTR. REP., May-June 2010, at 32, 32. 104. See Schwarz, supra note 81, at 57; Quill 1998, supra note 97, at 334. 105. See Schwarz, supra note 81, at 57. 106. Timothy W. Kirk & Margaret M. Mahon, National Hospice and Palliative Care Organization (NHPCO) Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients, 39 J. PAIN & SYMPTOM MGMT. 914, 914-15 (2010) (emphasis in original). 107. See Quill et al., Last-Resort Options, supra note 40, at 421.

2011] Voluntarily Stopping Eating and Drinking 379 of pain medicine may not be sufficient to ameliorate the patient’s agony and torment. With PSU, on the other hand, the medical provider administers medication where the intended goal is unconsciousness (not death).108 The operative assumption is that when a person is unconscious, he or she does not feel any pain.109 This way, the person is able to die without pain and suffering.110 Through PSU, death is usually caused either by the underlying illness or by dehydration. The underlying illness or some complication of it could cause death since PSU is only used when the patient is in the very end stages of illness.111 Death could also be caused by dehydration. PSU patients, who are unconscious, cannot eat or drink and are dependent upon artificial nutrition and hydration. However, these patients almost always refuse such measures.112 PSU is lawful by its nature because it combines the administration of nonlethal amounts of medication with the refusal of life-sustaining medical treatment. Each of these two methods is universally accepted as being a legal treatment choice.113 PSU is available, however, only to persons who are terminally ill and who are experiencing extreme suffering.114 It is not available to those, like Elizabeth Bouvia or Christian Rossiter, who could (and did) live for many more years without quality of life. Furthermore, PSU may be limited to those whose suffering is physical in etiology. There is no consensus that PSU is indicated for existential suffering when the patient has “a loss or interruption of meaning, purpose, or hope in life.”115 Finally, even among

108. See Quill, supra note 25, at 19; Schwarz, supra note 81, at 57. 109. See Schwarz, supra note 81, at 57. 110. See id. (rendering the patient unconscious will result in the patient being unaware of symptoms). 111. See Quill et al., Palliative Options, supra note 39, at 51; Schwarz, supra note 81, at 57. 112. Rady & Verheijde, supra note 38, at 212 (“Continuous deep sedation is associated with intentional dehydration and starvation.”); Quill et al., Palliative Options, supra note 39, at 51- 52; Quill et al., Last-Resort Options, supra note 40, at 422. See also Abrahm, supra note 32, at 479 (“The vast majority of patients who need palliative sedation to unconsciousness (or their surrogates) decide not to use artificial hydration . . . .”); Berger, supra note 103, at 33; Bernat et al., supra note 28, at 161; Lynn A. Jansen & Daniel P. Sulmasy, Careful Conversation About Care at the End of Life, 137 ANNALS INTERNAL MED. 1008, 1010 (2002) (author’s response to claims made in a letter to the editor) [hereinafter Jansen & Sulmasy 2002] (“[T]erminal sedation and voluntary stopping of eating and drinking can be combined . . . .”). Where PSU is combined with refusal of food and fluid, it looks a great deal like VSED except that the PSU has made oral eating and drinking impossible. Boudewijn E. Chabot & Arnold Goedhart, A Survey of Self- Directed Dying Attended by Proxies in the Dutch Population, 68 SOC. SCI. & MED. 1745, 1746 (2009). Death is not caused by the PSU itself. See generally M. Maltoni et al., Palliative Sedation Therapy Does Not Hasten Death: Results from a Prospective Multicenter Study, 20 ANNALS OF ONCOLOGY 1163- 69 (2009). 113. Quill et al., Palliative Options, supra note 39, at 51. 114. Kirk & Mahon, supra note 106, at 915. 115. Id. at 916 (endnotes omitted). See also Molly L. Olsen et al., Ethical Decision Making with End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments, 85 MAYO CLINIC PROC. 949, 950 (2010) (“Usually, PS is used to treat physical symptoms . . . . [T]he use of PS for existential or psychological suffering . . . remains controversial.”). 380 Widener Law Review [Vol. 17: 363 those for whom PSU is legally and clinically available, some may find it repugnant to linger on in a state of unconsciousness.116

4. Physician-Assisted Suicide

A less common option for deliberately hastening death is physician-assisted suicide (PAS).117 This entails a physician prescribing a lethal dose of drugs, usually barbiturates. The patient then obtains the drugs and ingests them (or at least has them available to ingest) when and where he or she chooses.118 PAS could be effective for competent, terminally ill people who are neither dependent upon any life-sustaining medical treatment nor in pain. Thus, PAS is an option for those who cannot exercise the right to refuse and who are ineligible for high-dose opioids or PSU. For example, a cancer patient may fall into this category. Many times, people with terminal cancer do not wish to endure the final stages of it.119 Terminal cancer can be incredibly painful and is associated with a loss of dignity at the end of life. Patients in the end stages are unable to care for their own hygiene or go to the bathroom independently; they may have nausea and vomiting, weakness, fatigue, loss of appetite, and loss of taste. Knowing that these end stages and symptoms are inevitable (or at least forecast), the person may want to die before entering them. At the (earlier) point, when this person may choose physician-assisted suicide, there may be few other options because he or she is not dependent on any life- sustaining medical treatment and is ineligible for terminal sedation or high dose opioids. But while PAS may be an attractive option, it is a very limited one. Specifically, it is limited in two ways. First, it is legal in only three states: Montana,120 Oregon,121 and Washington.122 Second, even in these states, PAS

116. See Cantor & Thomas, supra note 27, at 135. 117. See Schwarz, supra note 81, at 57. We recognize that the increasingly accepted terms are “aid in dying” or “[p]hysician-assisted dying.” See Kathryn L. Tucker, In the Laboratory of the States: The Progress of Glucksberg’s Invitation to States to Address End-of-Life Choice, 106 MICH. L. REV. 1593, 1595-96 (2008); Kathryn L. Tucker, Privacy and Dignity at the End of Life: Protecting the Right of Montanans to Choose Aid in Dying, 68 MONT. L. REV. 317, 317 (2007). 118. See Kathy L. Cerminara & Alina Perez, Therapeutic Death: A Look at Oregon’s Law, 6 PSYCHOL., PUB. POL’Y, & L. 503, 506 (2000). 119. See Cristina Monforte-Royo et al., The Wish to Hasten Death: A Review of Clinical Studies (2010) (footnote omitted), available at http://onlinelibrary.wiley.com/doi/ 10.1002/pon.1839/pdf (publication forthcoming 2011) (stating that “[b]etween 1998 and 2001, a total of 140 people, almost all of them with end-stage cancer, requested PAS under the law in Oregon”); Keith G. Wilson et al., Desire for Euthanasia or Physician-Assisted Suicide in Palliative Cancer Care, 26 HEALTH PSYCHOL. 314, 319-22 (2007). 120. Baxter v. State, 224 P.3d 1211, 1211 (Mont. 2009). The Montana Legislature reconvenes in January 2011, when bills, both to implement and to override this decision, will be introduced. Charles S. Johnson, Missoula Lawmaker Wants to Implement Court’s Physician-Assisted Suicide Ruling, BILLINGSGAZETTE.COM (July 8, 2010), http://billingsgazette.com/news/state-and- regional/Montana/article_f72e6544-8af1-11df-9802-001cc4c002e0.html. 121. Oregon Death with Dignity Act, OR. REV. STAT. §§ 127.800-995 (2007).

2011] Voluntarily Stopping Eating and Drinking 381 is legal only under narrowly defined circumstances.123 Among other things, the patient must: (a) be a resident of the state; (b) be terminally ill; (c) find a physician willing to prescribe; (d) make both written and oral requests over a minimum time period; (e) be competent at the time of the requests; and (f) be able to ingest the medication him or herself. Moreover, even if all these conditions are satisfied, many patients have difficulty finding a physician willing to write the prescription.124 While some PAS occurs in other states as an underground practice, its availability is extremely limited and uncertain.125

5. Voluntary Active Euthanasia

In contrast to physician-assisted suicide, voluntary active euthanasia (VAE) involves a physician who both prescribes and administers the lethal medication.126 This practice is suitable for patients who are either unable or unwilling to ingest or inject medication themselves.127 VAE is illegal in all United States jurisdictions.128 However, like physician-assisted suicide, it is still used despite its illegality.129 But given its risks and rarity, VAE is generally not a true option for those suffering at the end of life.130

122. The Washington Death with Dignity Act, WASH. REV. CODE § 70.245 (Supp. 2010). 123. Unlike Oregon and Washington, “Montana has not enacted statutes with specific requirements governing provision of aid in dying.” Kathryn L. Tucker & Christine Salmi, Aid in Dying: Law, Geography and Standard of Care in Idaho, THE ADVOCATE, Aug. 2010, at 42, 44. 124. See Howard Wineberg, Physician-Assisted Suicide in Oregon: Why so few Occurrences?, 174 MED. J. AUSTL. 353, 353 (2001). 125. See MEISEL & CERMINARA, supra note 88, at 12-37 – 12-39; Roger S. Magnusson, “Underground Euthanasia” and the Harm Minimization Debate, 32 J. L., MED. & ETHICS 486, 486 (2004); Quill, supra note 25, at 17; Stephen W. Smith, Some Realism About End of Life: The Current Prohibition and the Euthanasia Underground, 33 AM. J. L & MED. 55, 86 (2007). 126. Quill et al., Palliative Options, supra note 39 at 54. 127. See id. 128. See id. at 55. VAE is legal in the Netherlands. JOHN GRIFFITHS ET AL., EUTHANASIA AND LAW IN EUROPE 29 (2008); MEISEL & CERMINARA, supra note 88, at 12-92 – 12-94. 129. See Anthony L. Back et al., Physician-Assisted Suicide and Euthanasia in Washington State, 275 JAMA 919, 921 (1996) (fourteen of the fifty-eight physicians who had been asked by patients to administer lethal injections complied with those requests); Schwarz 2007, supra note 40, at 1291. 130. Patients in the United States also have the option of traveling to a country that permits PAS or euthanasia. Medical tourism is experiencing tremendous growth. See I. Glenn Cohen, Protecting Patients with Passports: Medical Tourism and the Patient-Protective Argument, 95 IOWA L. REV. 1467, 1476-77 (2010). There has been a growth in suicide tourism in particular. See Thaddeus Mason Pope, Legal Briefing: Medical Futility and Assisted Suicide, 20 J. CLINICAL ETHICS 274, 279-82 (2009). 382 Widener Law Review [Vol. 17: 363

C. Choosing an Exit Option from an Incomplete Menu

The preceding “menu” of exit options is not quite a complete list. Rather, it is a survey of what is now available in this country.131 With the exception of voluntary active euthanasia, all of these options are legal in some way. People who wish to hasten death can often choose one of these options depending upon their particular predicament. Those dependent on technology will likely refuse that technology. Terminally ill patients with intractable suffering may choose PSU. People in excruciating pain may opt for high doses of opioids. Terminally ill residents of Montana, Oregon, and Washington may ask a physician to prescribe a lethal amount of barbiturates. Noticeably absent from this survey of exit options is an exit option for people, like Jane in South Australia132 and Elizabeth Bouvia,133 who are not dependent on medical technology, who are not terminally ill, and/or who are not in intractable pain. Absent is an option for people with severe forms of dementia, cancer that is not in the end stages, AIDS, quadriplegia, Huntington’s disease, ALS, and other chronic illnesses. Some individuals with these conditions wish to hasten death before reaching end stages that they find heinous. This group of people would prefer to preserve dignity and independence, and to avoid altogether the pain and suffering associated with the end of life in these circumstances. For this population there is a sixth “exit option” by which death can be hastened: voluntarily stopping eating and drinking (VSED). VSED is appropriate for those who are unable to use any of the other exit options because they lack dependence on machines, because the end stages of illness have not yet come, or because of legality.134 Moreover, even if VSED fills no gap not already filled by other options, many patients still prefer VSED to the other options. In Oregon, for example, physician-assisted suicide is a legitimate option. But PAS-eligible patients choose VSED twice as often as PAS.135 A preference for one means over the other may depend on several factors. First, it might depend on the importance placed on control. While PAS entails a single instantaneous and irrevocable

131. There are other nonmedical options for hastening death. For example, various books and organizations advise individuals about how to use a helium hood and how to obtain and take Nembutal. See, e.g., PHILIP NITSCHKE & FIONA STEWART, THE PEACEFUL PILL HANDBOOK 32-34, 42-53 (2006); Pope, supra note 130, at 279. 132. See supra notes 1 to 22 and accompanying text. 133. See supra notes 61 to 69 and accompanying text. 134. Sarah-Kate Templeton, Terminally Ill Opt for Suicide by Starvation, THE TIMES (U.K.) (March 8, 2009), http://www.timesonline.co.uk/tol/life_and_style/health/article5864857.ece (reporting on how physicians advise patients about VSED as an alternative to assisted suicide). 135. See Ganzini et al., supra note 38, at 363; Joan Arehart-Treichel, Terminally Ill Choose Fasting Over M.D.-Assisted Suicide, PSYCHIATRIC NEWS, Jan. 16, 2004, at 15, 15. VSED has more support amongst healthcare providers. See, e.g., Theresa A. Harvath et al., Voluntary Refusal of Food and Fluids: Attitudes of Oregon Hospice Nurses and Social Workers, 10 INT’L J. PALLIATIVE NURSING 236, 239 (2004).

2011] Voluntarily Stopping Eating and Drinking 383 act, VSED occurs over several days, allowing time for the patient to change his or her mind. Second, the slower process permits relationship reconciliation and a healing goodbye. Third, a preference for VSED over PAS might also depend on access to a physician who will prescribe lethal medication, other beliefs, and family views.136 VSED, for some patients, in short, is either their only option and/or their preferred option. Currently, VSED is an option available to many terminally ill patients. However, it was, until recently, rarely discussed as a viable alternative to the other means of hastening death.137 Due to the lack of discussion and study of VSED, there are many unanswered questions about it. Its advocates profess its legality and practicality.138 Its opponents liken it to torture and call it illegal.139 In Part III, we explain the mechanism of VSED and why it may be the best exit option for some people. In Part IV, we analyze the legal status of VSED.

III. VOLUNTARILY STOPPING EATING AND DRINKING

Voluntarily stopping eating and drinking is an intentional decision to refuse oral food and fluid for the specific purpose of hastening death.140 This concept is difficult to fathom; in a society that is completely obsessed with food, we are more accustomed to gluttony than starvation or dehydration.141 We are taught to love food and turn to it when we are happy, sad, excited, or afraid.142 We are inundated with high-fat, high-calorie, high-chemical foods

136. Ganzini et al., supra note 38, at 364. See also FRIENDS AT THE END, supra note 25, at 1 (“For some it is the only way out, and some may see it as a more natural way of dying than a drug overdose.”) (emphasis added). 137. See generally BERNAT, supra note 9, at 215 (stating that, “[u]ntil the past 15 years, the euthanasia debate failed to include [VSED] as an alternative”). 138. See infra notes 275-277. See also RODNEY SYME, A GOOD DEATH: AN ARGUMENT FOR VOLUNTARY EUTHANASIA 181-82 (2008) (recognizing, though not his first choice for hastening death, that VSED is legal and peaceful); MARY WARNOCK & ELISABETH MACDONALD, EASEFUL DEATH: IS THERE A CASE FOR ASSISTED DYING? 103-05 (2008); Franklin G. Miller & Diane E. Meier, Voluntary Death: A Comparison of Terminal Dehydration and Physician-Assisted Suicide, 128 ANNALS INTERNAL MED. 559, 560 (1998); Lori Montgomery, Right- to-Die Leaders Endorse Starvation: Easy, Painless, Legal, CHARLOTTE OBSERVER, Nov. 28, 1996, at 43A (“Experts . . . said they see few legal barriers to the method.”); Quill et al., Palliative Options, supra note 39, at 64 (“TS and VSED are probably legal and are widely accepted by hospice and palliative care physicians.”) 139. Medical Decisions at the End of Life, LIFETREE, INC. http://www.lifetree.org/ resources/pcbrochure.pdf (a pro-life Christian educational ministry stating that “[d]eath by starvation and dehydration is painful and inhumane.”). 140. See Quill et al., Palliative Options, supra note 39, at 50. 141. See DAVID A. KESSLER, THE END OF OVEREATING: TAKING CONTROL OF THE INSATIABLE AMERICAN APPETITE 173-74 (2009). 142. Cf. Johan Pottier, Food, in ENCYCLOPEDIA OF SOCIAL AND CULTURAL ANTHROPOLOGY 238, 239-40 (Alan Barnard & Jonathan Spencer eds., 2002); Joanne Lynn & James F. Childress, Must Patients Always be Given Food and Water?, HASTINGS CTR. REP., Oct. 1983, at 17, 17 (“[F]ood and water are so central to an array of human emotions that it is almost impossible to consider them with the same emotional detachment that one might feel toward a respirator or a dialysis machine.”). 384 Widener Law Review [Vol. 17: 363 and drinks. In this over-stuffed world, it is hard to imagine why a person would opt to refuse the food and drink that we hold so dearly, especially as a way to die. Persons suffering at the end-of-life, however, have many good reasons to cease eating and drinking.143 Like Jane in South Australia, they choose VSED because of “a readiness to die, [a] belief that continuing to live [is] pointless, [a] poor quality of life, a desire to die at home, and a desire to control the circumstances of dying.”144 VSED offers patients “a way to escape agonizing, incurable conditions that they consider to be worse than death.”145 A death incident to VSED is peaceful, painless, and dignified.146 Many people choose this option so that they may be in control of their own deaths, knowing that they will be dignified deaths.147 Furthermore, many people benefit not only from using this option, but also from the mere knowledge that it is available. For example, Margaret Page suffered a brain hemorrhage in 1991.148 Her speech and movement were severely limited, and she needed assistance to shower and eat.149 On March 14, 2010, Margaret stopped eating and drinking, and affirmed that she had made that decision because she no longer wanted to live.150 “She had been thinking about trying to die for a long time.”151 She was assessed by psychologists three times and each found her mentally competent.152 The nursing home in which she resided respected Margaret’s decision, and she died on March 30, 2010.153 Partly because VSED is underexplored by major medical associations, it is referred to by at least eight different terms.154 Some refer to it as “Voluntary Refusal of Food and Fluid” (VRFF).155 Others refer to it as “Voluntary

143. See Melissa A. Taylor, Benefits of Dehydration in Terminally Ill Patients, 16 GERIATRIC NURSING 271, 271 (1995). 144. Schwarz 2007, supra note 40, at 1292. 145. Miller & Meier, supra note 138, at 559. 146. See infra note 191. 147. See Sandra Jacobs, Death by Voluntary Dehydration — What the Caregivers Say, 349 NEW ENG. J. MED. 325, 325-26 (2003). See also Bernat et al., supra note 28, at 2725; Quill, supra note 25, at 21 (VSED “has the advantage of putting the decision in the patient’s hands . . . .”). This is important because many people wish to maintain independence and control at the end of life. VSED allows this because ultimately the patient is able to make a purposeful, independent decision to stop eating and drinking. 148. Kiran Chug, Hunger Striker Dies, DOMINION POST (N.Z.), Mar, 31, 2010, at A1. 149. Id. 150. See Kate Newton, Starving Herself to Death, DOMINION POST (N.Z.), Mar. 24, 2010, at A1. 151. Id. 152. Id. 153. Chug, supra note 148. 154. The more general concept of withholding oral food and fluids, not specifically for the purpose of hastening death, is often referred to as “Nil by Mouth.” MARK BELHAM, TRANSESOPHAGEAL ECHOCARDIOGRAPHY IN CLINICAL PRACTICE 4 (2009). 155. See TERMAN, supra note 75, at 175; Chabot & Goedhart, supra note 112, at 1746; Ganzini et al., supra note 38, at 360; Quill & Byock, supra note 36, at 408. Since the individual is

2011] Voluntarily Stopping Eating and Drinking 385

Terminal Dehydration” (VTD),156 “Voluntary Death by Dehydration” (VDD),157 or just “Terminal Dehydration.”158 Still others refer to it as “Stopping Eating and Drinking” (STED),159 “Patient Refusal of Hydration and Nutrition” (PRHN),160 or as “Indirect Self-Destructive Behavior” (ISDB).161 The fundamental concept described by these various names is basically the same. We use “VSED” because it seems to have more currency in recent academic and professional literature.162 In this section, we will first provide a basic description of VSED. Second, we will quickly trace its history, from ancient Greece to the contemporary United States. Third, we methodically explain, both biologically and medically, how VSED enables a good quality death. Finally, to address prevalent common misconceptions, we distinguish VSED from cases of “bad” dehydration.

A. Parameters of VSED

VSED entails deliberately ceasing the (self or assisted) oral intake of all food and fluids, except for those small amounts of fluids necessary for mouth comfort or for the administration of pain medication.163 The patient164

often being fed rather than feeding themselves, VRFF may be more precise and accurate than VSED. 156. Alan D. Lieberson, Treatment of Pain and Suffering in the Terminally Ill, PRECIOUSLEGACY.COM (1999), http://preciouslegacy.com/chap13.html. 157. James Leonard Park, Voluntary Death by Dehydration, U. MINN. (Aug. 1, 2010), http://www.tc.umn.edu/~parkx032/CY-VD-H2.html. Park has also suggested the term “merciful death by dehydration” (MDD). James Leonard Park, First Books on Voluntary Death by Dehydration, U. MINN. (Oct. 25, 2010), http://www.tc.umn.edu/~parkx032/B-VDD.html. 158. See Miller & Meier, supra note 138, at 559; Joan L. Huffman & Geoffrey P. Dunn, The Paradox of Hydration in Advanced Terminal Illness, 194 J. AM. C. SURGEONS 835, 835 (2002). Erich Loewy uses the term “terminal sedation.” Erich H. Loewy, Terminal Sedation, Self- Starvation, and Orchestrating the End of Life, 161 ARCHIVES INTERNAL MED. 329, 329 (2001). 159. CHABOT, supra note 8, at 18. 160. BERNAT, supra note 9, at 215; Bernat et al., supra note 28, at 2723; Ira Byock, Patient Refusal of Nutrition and Hydration: Walking the Ever-Finer Line, AM. J. HOSPICE & PALLIATIVE CARE, Mar.-Apr. 1995, at 8, 8 (1995); Barbara A. Olevich, “Dying Comfortably” of Starvation and Dehydration: What is the Evidence?, CATHOLIC EXCHANGE (Feb. 21, 2005, 12:00 AM), http://catholicexchange.com/2005/02/21/93986. 161. Elliot M. Berry & Esther-Lee Marcus, Disorders of Eating in the Elderly, 7 J. ADULT DEV. 87, 90 (2000); Yeates Conwell et al., Indirect Self-Destructive Behavior Among Elderly Patients in Nursing Homes: A Research Agenda, 4 AM. J. GERIATRIC PSYCHIATRY 152 (1996). 162. See, e.g., Cantor 2006, supra note 25, at 418; Cantor & Thomas, supra note 27, at 84; Jansen & Sulmasy 2002, supra note 112, at 1010; Quill et al., Palliative Options, supra note 39, at 50; Schwarz 2007, supra note 40, at 1288; Cynthia Kellam Stinson et al., Ethical Dilemma: Voluntarily Stopping Eating and Drinking, 23 DIMENSIONS CRITICAL CARE NURSING 38, 39-40 (2004). 163. See CHABOT, supra note 8, at 18 (“Definition: A person who is otherwise physically capable of taking nourishment makes an explicit decision to discontinue all oral intake and, if this decision is sustained, will die of dehydration or some intervening complication.”); Quill et al., Palliative Options, supra note 39, at 50. It is important to minimize liquids because even a moderate amount will prolong the dying process. See infra Part III.D. 386 Widener Law Review [Vol. 17: 363 remains physically capable of taking oral sustenance but chooses not to do so in order to hasten his or her death.165 For patients with the capacity to make healthcare decisions, the decision to stop eating and drinking can be made at any time and is completely voluntary.166 The patient could simply refuse food and fluids. This causes a peaceful death by dehydration.167 VSED might be confused with, and therefore should be carefully distinguished from, two similar mechanisms.168 First, VSED applies specifically to patients who choose to stop eating and drinking orally.169 These are patients who are physically able to take food and fluid by mouth, but choose not to do so. VSED does not apply to persons dependent upon a feeding tube or upon any other form of artificial nutrition and hydration.170 Second, VSED applies specifically to patients who deliberately choose to stop eating and drinking in order to hasten death. It does not apply to patients who

164. While VSED does not require the participation of healthcare professionals, we use the term “patient” for two reasons. First, individuals seeking to hasten their deaths are often dependent upon healthcare providers for treatment of their underlying illnesses. Second, medical supervision is recommended. See FRIENDS AT THE END, supra note 25, at 5 (“Sympathetic medical supervision is essential to ensure that any distressing side effects can be treated . . . .”); TERMAN, supra note 75, at 175-76; Cavin P. Leeman, Distinguishing Among Irrational Suicide and Other Forms of Hastened Death: Implications for Clinical Practice, 50 PSYCHOSOMATICS 185, 186 (2009) (“Medical attention is often helpful . . . .”); Quill, supra note 25, at 19 (“VSED . . . needs to be ‘physician-supported’ . . . .”). 165. For example, the recently popular case of Christian Rossiter, while characterized as an individual’s right to starve to death, was not about VSED. See, e.g., Nicolas Perpitch, Quadriplegic Christian Rossiter Wins Right to Starve to Death, THE AUSTRALIAN (Aug. 14, 2009), available at http://www.seniorsworldchronicle.com/2009/08/australia-quadriplegic- christian.html; Shears, supra note 59. Rossiter was physically unable to eat or drink; nutrition was provided to him through a tube inserted directly into his stomach. Brightwater Care Group, Inc. v Rossiter [2009] WASC 229 ¶ 8 (Austl.). 166. Quill et al., Palliative Options, supra note 39, at 50 (noting the importance of VSED being voluntary since it requires willpower on the part of the patient). Since depression, paranoia, and dementia may result in food refusal, patients refusing food should be screened for these diagnoses. GEN. MED. COUNCIL, TREATMENT AND CARE TOWARDS THE END OF LIFE: GOOD PRACTICE IN DECISION MAKING 52 (2010) (“If a patient refuses food or drink . . . you should first assess and address any underlying physical or psychological causes that could be improved with treatment or care.”); TERMAN, supra note 75, at 299 (“It is important that the refusal . . . is not contaminated by lack of information, misinformation, treatable depression, or coercion, and to ascertain that such a decision is authentic, consistent, and persistent.”); Berry & Marcus, supra note 161, at 89-91; Lewis M. Cohen et al., Psychiatric Evaluation of Death-Hastening Requests: Lessons from Dialysis Discontinuation, 41 PSYCHOSOMATICS 195, 196 (2000). 167. See infra Part III.C. 168. Some have proposed limiting VSED to those patients with an irreversible lethal illness not responsive to standard palliative care. Otherwise, they argue, VSED looks too much like suicide. Lynn A. Jansen, No Safe Harbor: The Principle of Complicity and the Practice of Voluntary Stopping of Eating and Drinking, 29 J. MED. & PHIL. 61, 63-64 (2004). While we do not, in this paper, defend specific clinical indications, we do not think that VSED should be so limited. 169. See Chabot & Goedhart, supra note 112, at 1746. 170. See id.

2011] Voluntarily Stopping Eating and Drinking 387 lack the capacity to make a contemporaneous (or advance) choice to VSED.171 It does not include those patients who cease to eat or drink spontaneously, perhaps because of a condition (such as a tooth abscess or gastric reflux) that interferes with their appetite or swallowing.172 VSED is an intentional act and is distinct from the involution of thirst that is a normal part of the dying process.173 “When patients push away food . . . do such actions really mean that they do not want to be fed, or could they be uncomfortable, angry, depressed, or seeking attention?”174 Feeding problems may be due to medical problems such as mouth lesions, psychosocial problems, or the manner of hand feeding such as feeding too fast, not small enough bites, unappealing taste, and/or consistency. Furthermore, VSED does not include those patients who lack capacity, whether due to anorexia nervosa or dementia, as many of those suffering from dementia do not recognize their food as food.175 VSED applies only to those patients who are

171. See Miller & Meier, supra note 138, at 561. 172. “Food refusal behavior is not an uncommon problem in both community and hospital settings.” Berry & Marcus, supra note 161, at 87 (citation omitted). While some patients “deliberately refused food because he or she wished to die,” others refused because of dementia and “reflexive withdrawal behavior,” dislike of a certain food, or “lack of ability to eat (dysphagia).” Id. at 88. See also ROYAL C. OF PHYSICIANS, ORAL FEEDING DIFFICULTIES AND DILEMMAS: A GUIDE TO PRACTICAL CARE, PARTICULARLY TOWARDS THE END OF LIFE 3-8 (2010) (discussing various causes of feeding problems) [hereinafter ORAL FEEDING DIFFICULTIES]; Jansen, supra note 168, at 62; Janet C. Mentes, A Typology of Oral Hydration: Problems Exhibited by Frail Nursing Home Residents, J. GERONTOLOGICAL NURSING, Jan. 2006, at 13, 15-16 (reviewing different reasons for refusing fluids, including “concerns about being able to reach the toilet”); Katherine Wasson et al., Food Refusal and Dysphagia in Older People with Dementia: Ethical and Practical Issues, 7 INT’L J. PALLIATIVE NURSING 465, 465, 468-69 (2001) (typical problems suffered by people with dementia include clamping the mouth shut, distractibility, and reduced concentration; furthermore, quality and attractiveness of meals is important to promote self-feeding). Ninety-two-year-old Mary Hier, for example, suffered from a cervical diverticulum in her esophagus, which greatly impeded her ability to ingest food orally. In re Hier, 464 N.E.2d 959, 960 (Mass. App. Ct. 1984). 173. BERNAT, supra note 9, at 152-53. 174. Bernard Lo & Laurie Dornbrand, Guiding the Hand that Feeds: Caring for the Demented Elderly, 311 NEW ENG. J. MED. 402, 402 (1984). Patients refusing food and fluid should be screened for these conditions. Areas of concern are: swallowing disorders, poor oral health, inadequate staffing, improper bed position, and food choices. See To Force Feed the Patient with Dementia or Not to Feed: Preferences, Evidence Base, and Regulation, ANNALS OF LONG TERM CARE (2002) [hereinafter ANNALS OF LONG TERM CARE] (discussing a dietary analysis of one hundred nursing home residents with Dr. Jeanie Kayser-Jones), available at http://annalsoflongtermcare.com/article/3310. 175. See DANA K. CASSELL & DAVID H. GLEAVES, THE ENCYCLOPEDIA OF OBESITY AND EATING DISORDERS 23-36 (3d ed. 2006) (discussing anorexia nervosa); Wasson et al., supra note 172, at 469 (stating that patients with dementia do not recognize food as edible). “Success with oral intake is often impacted as dementia progresses. The individual with dementia may have issues with self-feeding, recognizing food, maintaining attention, persistence of action, or apraxia . . . .” Sharon J. Emley et al., Practical Strategies: Nourishing Liquid Diet, 13 PERSPECTIVES ON GERONTOLOGY 33, 33 (2008). 388 Widener Law Review [Vol. 17: 363 physically able to consume food or fluid by mouth but make an informed, voluntary decision not to do so.176

B. History of VSED

Ongoing debates surrounding when to use or to stop use of many types of end-of-life treatment, such as CPR and ventilators, date only to the 1960s.177 The option to hasten death by withholding or withdrawing these types of treatment did not exist (and could not have existed) prior to their development. In contrast, VSED is a method of hastening death that dates back thousands of years.178 Jainism, for example, is an Indian religion dating to the ninth century B.C. In one of its rituals, Santhara (or Sallekhana), a Jain stops eating with the intention of preparing for death.179 The intention is to purify the body and to remove all thought of physical things from the mind: “The supreme goal is to minimize the damage [that] one does to their environment.”180 Santhara is undertaken only when the body is no longer capable of serving its owner as an instrument of spirituality and when the inevitability of death is a matter of undisputed certainty.181 Santhara is seen as the ultimate way to expunge all sins, liberating the soul from the cycle of birth, death and rebirth.182 Starvation

176. VSED should be distinguished from stopping eating for political reasons, from spontaneous diminishment of eating and drinking, and from incapacitated decisions to stop eating and drinking. See CHABOT, supra note 8, at 22; Cantor 2006, supra note 25, at 417 (discussing prisoners going on hunger strikes); D.M.T. Fessler, The Implications of Starvation Induced Psychological Changes for the Ethical Treatment of Hunger Strikers, 29 J. MED. ETHICS 243, 245 (2003) (discussing political reasons for which prisoners go on hunger strikes); Jansen, supra note 168, at 62. 177. See John M. Luce, A History of Resolving Conflicts Over End-of-Life Care in Intensive Care Units in the United States, 38 CRITICAL CARE MED. 1623, 1624 (2010). 178. See Chabot & Goedhart, supra note 112, at 1750 (stating that Greek and Roman societies used an antiquated form of VSED to hasten death). See also BERNAT, supra note 9, at 215 (dating VSED to “the Jainist method of bhaktapratyakhyana, or fasting and meditating until death”) (citing S. SETTAR, PURSUING DEATH: PHILOSOPHY AND PRACTICE OF VOLUNTARY TERMINATION OF LIFE 11 (1990)); Whitny Braun, Sallekhana: The Ethicality and Legality of Religious Suicide by Starvation in the Jain Religious Community, 27 MED. & L. 913, 918, 918 n.23 (2008) (“The practice of ritual suicide by starvation is not unique to the Jains.”) (citing Buddhism as a religious source); Montgomery, supra note 138, at 43A (“Patient refusal of nutrition and hydration . . . is nothing new. Centuries ago, elderly members of Native American tribes wandered into the woods to die without food or drink. Eskimo families sent the elderly off on ice floes to meet their maker.”); BALLAD OF NARAYAMA (Toei Company 1983) (depicting the practice of ubasuteyama in a 19th century Japanese village, where all people are banished to the top of Mount Nara to die when they reach the age of seventy). 179. Braun, supra note 178, at 913. 180. Id. at 915. 181. Id. (stating that Santhara comes from spiritual purification). 182. Id. at 915-16.

2011] Voluntarily Stopping Eating and Drinking 389 prevents the accumulation of karma, and ascendance is achieved through strict asceticism.183 Hundreds of Jains use Santhara each year.184 But widespread attention was focused on the practice in 2006. Sixty-one-year-old Vimli Devi Bansali, a resident of the Indian state of Rajasthan, was suffering from incurable brain cancer.185 In September 2006, she observed Santhara, and died after not eating or drinking for fourteen days.186 Her fast led to a petition being filed in the state’s high court seeking to ban the practice as tantamount to suicide.187 The case has not yet been heard. Hinduism includes a similar practice called Prayopavesa. While it also entails fasting to death, Prayopavesa is limited to those: (a) who are unable to perform normal bodily purification; (b) whose death appears imminent or whose condition is so bad that life’s pleasures are nil; and (c) who engage in the ritual under community regulation.188 The process allows one to settle differences with others and to ponder life.189 Notably, it is distinguished from “sudden suicide,” which is prohibited as disturbing the cycle of death and rebirth.190

C. VSED Enables a Good Quality Death

VSED ensures a comfortable, natural, and dignified death. VSED itself causes no pain. Moreover, by hastening death, VSED permits the patient to avoid her baseline physical and/or existential suffering. Next, we review the clinical experience, which demonstrates that deaths hastened by VSED were comfortable and without pain. We explain the physiological effects of VSED. In short, we demonstrate not only that VSED poses little risk of pain, but also that it can provide significant benefit by helping patients avoid suffering.

1. Clinical Experience with VSED Is Positive

There is a good amount of anecdotal evidence that a death incident to VSED is peaceful, painless, and dignified.191 Perhaps the most famous of

183. Id. at 917. 184. Id. at 914-15. 185. Randeep Ramesh, Cancer Victim Revered for Fasting to Death, GUARDIAN (Sept. 30, 2006), http://www.guardian.co.uk/world/2006/sep/30/india.randeepramesh. 186. Id. 187. Narayan Bareth, Dispute as Woman Fasts to Death, BBC NEWS (Sept. 29, 2006), http://news.bbc.co.uk/2/hi/south_asia/5390162.stm; Ramesh, supra note 185. 188. SATGURU SIVAYA SUBRAMUNIYASWAMI, DANCING WITH ŚIVA: HINDUISM’S CONTEMPORARY CATECHISM 833 (6th ed. 2003). 189. Id. at 833. 190. Id. 191. In addition, studies not specific to VSED have found that dying patients who are dehydrated and malnourished do not feel hunger or thirst. See Mary J. Baines, Control of Other Symptoms, in THE MANAGEMENT OF TERMINAL DISEASE 99 (Cicely M. Saunders ed., 1978); A.G.O. Crowther, Management of Other Common Symptoms of the Terminally Ill, in THE DYING PATIENT: THE MEDICAL MANAGEMENT OF INCURABLE AND TERMINAL ILLNESS 222-23 (Eric 390 Widener Law Review [Vol. 17: 363 these is Dr. David Eddy’s account of his own mother’s VSED.192 Mrs. Eddy was suffering from progressive debilitation, chronic depression, anemia, recent surgery, and recurrent rectal prolapse.193 Mrs. Eddy asked her son about the option of refusing food and fluids. He assured her that without nutrition and, especially without adequate fluid, the end would come quickly.194 Mrs. Eddy was elated and, following the celebration of her eighty-fifth birthday and with the support of her primary care physician, she stopped eating and drinking.195 Her last morsel was chocolate. She died peacefully six days later.196 The description of Mrs. Eddy’s last few days is compelling:

Over the next four days, my mother greeted her visitors with the first smiles she had shown for months. She energetically reminisced about the great times she had had and about things she was proud of. . . . She also found a calming self- acceptance in describing things of which she was not proud. She slept between visits but woke up brightly whenever we touched her to share more memories and say a few more things she wanted us to know. On the fifth day it was more difficult to wake her. When we would take her hand she would open her eyes and smile, but she was too drowsy and weak to talk very much. On the sixth day, we could not wake her. Her face was relaxed in her natural smile, she was breathing unevenly, but peacefully. We held her hands for another two hours, until she died.197

A similar positive account is provided of Joshua Segar’s death. Joshua was a man who chose to stop eating and drinking after becoming increasingly ill with Parkinson’s disease.198 Joshua’s family described his death as comfortable and without pain.199 They recounted that Joshua was happy when he made the decision to stop eating and drinking, and that his death was a week-long process that was “peaceful and . . . beautiful.”200 A third notable story is that of Michael Miller, an eighty-year-old retired surgeon with end-stage cancer. As a physician, Miller was well aware of the benefits of palliative care and hospice, but he wanted to have more control

Wilkes ed., 1982); Phyllis Schmitz & Merry O'Brien, Observations on Nutrition and Hydration in Dying Cancer Patients, in BY NO EXTRAORDINARY MEANS: THE CHOICE TO FORGO LIFE- SUSTAINING FOOD AND WATER 29, 36 (Joanne Lynn ed., 1986). 192. David M. Eddy, A Conversation with My Mother, 272 JAMA 179 (1994) [hereinafter Eddy, Conversation]; David Eddy, “I’m Still Telling Others How Well This Worked for My Mother”, in THE BEST WAY TO SAY GOODBYE: A LEGAL PEACEFUL CHOICE AT THE END OF LIFE 82-84 (Stanley A. Terman ed. 2007). 193. Eddy, Conversation, supra note 192, at 180-81. 194. Id. at 181. 195. Id. 196. Id. 197. Id. 198. Richard Davis, The Death of Joshua Segar, BRATTLEBORO REFORMER, May 23, 2008, available at homepages.sover.net/~asegar/TheDeathofJoshuaSegar.doc. 199. Id. 200. Id.

2011] Voluntarily Stopping Eating and Drinking 391 over the circumstances of his death.201 He wanted to do something that was “gentle [and] natural.”202 So, he stopped eating and drinking, resulting in his death thirteen days later.203 Because Miller wanted his death to be used as a teaching tool, he had it recorded in a short film that was released in 2008.204 There are many more published accounts of good deaths from VSED.205 And, fortunately, evidence concerning VSED is more than just anecdotal. There have been several independent studies with both treating nurses and family members aimed at understanding patient experiences with VSED at the end of life.206 For example, a 2005 study from a Dutch nursing home revealed that during the two weeks in which people lived after stopping eating and drinking, feelings of discomfort leveled out to acceptable levels after day two.207 Similarly, a widely-discussed 2003 study of United States hospice nurses found that “patients’ deaths [by VSED] were characterized by little suffering or pain and were peaceful.”208 The study then noted that the “data suggest that not eating and drinking in dying patients causes little suffering.”209 In an

201. Pam Vetter, “Dying Wish” Documents Death of Dr. Michael Miller with Conscious Choice to Stop Eating and Drinking, AM. CHRONICLE (July 28, 2008), http://www.americanchronicle.com /articles/view/69683. 202. Id. 203. Id. 204. DYING WISH (WordWise Productions 2008). 205. See TERMAN, supra note 75, at 97-98 (citing six separate types of sources for the conclusion that “Voluntarily Refusing Food & Fluid is NOT uncomfortable”); Johns, supra note 37, at 77-79; Ronald Baker Miller, A Peaceful End to a Beautiful Life, in THE BEST WAY TO SAY GOODBYE: A LEGAL PEACEFUL CHOICE AT THE END OF LIFE 296-99 (Stanley A. Terman ed., 2007); Montgomery, supra note 138, at 43A (“‘I’ve been around a lot of people who have chosen it, and it’s not painful.’”) (quoting Connie Holden, executive director of Hospice of Boulder County, Colorado). 206. See Byock, supra note 160, at 9-10 (reviewing several studies); Louise A. Printz, Terminal Dehydration, A Compassionate Treatment, 152 ARCHIVES INTERNAL MED. 697, 700 (1992) (citing testimony of heath care providers claiming that patients dying of dehydration are generally more comfortable than other dying or end-stage patients). See also Kimberly Vullo- Navich et al., Comfort and Incidence of Abnormal Serum Sodium, BUN, Creatinine and Osmolality in Dehydration of Terminal Illness, 15 AM. J. HOSPICE & PALLIATIVE CARE 77, 77-78 (1998). 207. Linda Ganzini, Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence, 4 PALLIATIVE & SUPPORTIVE CARE 135, 139 (2006). See also Robert J. Miller & Patricia G. Albright, What is the Role of Nutritional Support and Hydration in Terminal Cancer Patients?, AM. J. HOSPICE CARE, Nov.-Dec. 1989, at 33, 34-35 (stating that “[d]eath associated with dehydration or malnutrition was not perceived as painful”). 208. Ganzini, supra note 207, at 139; Ganzini et al., supra note 38, at 362. 209. Ganzini, supra note 207, at 139. Additionally, “it is the consensus of experienced physicians and nurses that terminally ill patients dying of dehydration or lack of nutrition do not suffer if treated properly.” Bernat et al., supra note 28, at 2725. Cf. Maria R. Andrews & Alan M. Levine, Dehydration in the Terminal Patient: Perception of Hospice Nurses, AM. J. HOSPICE CARE, Jan.- Feb. 1989, at 31, 31 (reporting that hospice nurses who witnessed the effects of terminal dehydration had positive perceptions of it); Maria Andrews et al., Dehydration in Terminally Ill Patients: Is It Appropriate Palliative Care?, 93 POSTGRADUATE MED. 201, 201-08 (1993); Jean M. Flick, A Comparative Study of Observations of Terminal Dehydration Between Beginning and Experienced Hospice Nurses (Dec. 1990) (unpublished M.S. thesis, Texas Women’s University) (on file with authors). 392 Widener Law Review [Vol. 17: 363 unrelated survey of about 800 members of the American Academy of Hospice Physicians, nearly ninety percent of respondents reported that their patients who refused hydration and nutrition experienced peaceful and comfortable deaths.210 In a large Dutch survey, seventy-four percent of respondents judged death by VSED as a dignified death.211 We more fully discuss clinical experience with VSED below. But first, to better grasp how and why VSED leads to a peaceful and comfortable death, it is useful to understand, biologically, how exactly it leads to death.

2. The Physiological Effects of VSED

When a person voluntarily stops eating and drinking, death occurs by dehydration. Terminal dehydration occurs by a complicated physiological process over a seven to fourteen day period.212 As humans, we constantly lose water through sweating, respiration, and urination. The only way to compensate for this water loss is intake via food and fluids. Once a person stops eating and drinking, there is only water loss and no water gain, causing dehydration. During the first twenty-four hours without food and fluid, the only symptoms that patients feel (due to dehydration) are hunger and thirst,213 and not all patients even feel hungry.214 The feeling of thirst comes from the slow process of dehydration that occurs in the kidneys and in the brain.215 In this

210. BERNAT, supra note 9, at 215 (citing Robert J. Miller, Nutrition and Hydration in Terminal Disease (unpublished manuscript)). 211. CHABOT, supra note 8, at 27. 212. Cantor 2006, supra note 25, at 415. This time period may vary based on a person’s physical condition at the time he or she chooses to stop eating and drinking. A person who is particularly well hydrated or obese will sense the effects of dehydration much more slowly than someone who is already dehydrated, malnourished, or physically ill. See CHABOT, supra note 8, at 27-28 (reporting in a sample of ninety-seven deaths by VSED that while some, especially those with a fatal illness, died in as few as seven to nine days, the majority died within sixteen days); Byock, supra note 160, at 10 (noting that an obese woman took longer to die); Quill et al., Palliative Options, supra note 39, at 51 (stating that death by VSED could take weeks); Quill & Byock, supra note 36, at 410 (noting that the time period before death can depend on one’s physical state before the start of VSED); Schwarz 2007, supra note 40, at 1291 (noting that death can take one to three weeks depending on the person’s physical state before the onset of VSED). 213. See MERCK MANUAL, supra note 93, at 2766; see also Jacobs, supra note 147, at 325- 26; Diana McAulay, Dehydration in the Terminally Ill Patient, NURSING STANDARD, Oct. 10-16, 2001, at 33, 33-34; Taylor, supra note 143, at 271; Charlotte J. Molrine, Difficult Discussions Regarding End of Life 5 (unpublished manuscript) (on file with authors) (“The only limited discomfort associated with terminal dehydration is dry mouth and dry skin.”). 214. See Byock, supra note 160, at 9. 215. This process is an endocrine process, as opposed to the fast process in the form of massive blood loss wherein the baroreceptors inside blood vessels sense drastic blood loss and begin to compensate for it. DEE UNGLAUB SILVERTHORN ET AL., HUMAN PHYSIOLOGY 521, 643, 648-49, 653, 662 (4th ed. 2007). Slight decreases in blood volume also trigger the

2011] Voluntarily Stopping Eating and Drinking 393 slow process, receptors in the brain detect a change in the concentration of solutes in the body, causing a secretion of a chemical called vasopressin.216 Vasopressin, also called antidiuretic hormone, tells the kidneys, through receptors in their functional unit, the nephron, that there is a decreased amount of water in the body.217 In response, the kidneys begin to conserve water.218 The brain then signals the mouth to feel thirst, which under usual circumstances induces the person to drink water to rehydrate.219 Although the kidneys can conserve water to some extent, intake of fluids is the only way to bring the body back to normal.220 The “feeling” of thirst, while likely uncomfortable, is easily overcome without rehydrating because receptors in the mouth tell the brain that thirst is quenched even before water enters the bloodstream.221 This means that the feeling of thirst can be remedied merely by sucking on ice chips or by taking small sips of cold water, without actually rehydrating and increasing the body’s volume of water.222 Following the first twenty-four hours, patients’ urine content is markedly reduced as the kidneys reabsorb water into the blood.223 This lack of excretion also causes the kidneys to reabsorb hydrogen into the body, making the blood acidic, and alerting the body to the fact that it is severely dehydrated.224 During this time, due to a chemical reaction that the body uses to maintain acid-base balance, the concentration of hydrogen and carbon dioxide in the body increases, causing the person to enter a state called metabolic acidosis.225 At this time, patients begin to hyperventilate to attempt to compensate for the increased carbon dioxide and the acidic nature of the blood.226 No intervention is necessary to make the patient comfortable during this time period, unless the patient is suffering from some kind of respiratory distress. In a healthy person, hyperventilating could reduce the effects of cardiac/baroreceptor response which sets in motion a different chemical pathway that allows arteries to constrict in order to increase blood pressure. Id. at 643. 216. Id. at 648-49. 217. Id. at 644-46. Human beings lose water constantly from breathing, sweating, and urinating. Id. at 644. The body is normally able to compensate for this water loss because of a pathway that causes thirst. See id. at 644-46. 218. Id. at 646. 219. Id. at 642-43, 653, 661. 220. Id. at 663. 221. Byock, supra note 160, at 9, 11; SILVERTHORN ET AL., supra note 215, at 658. 222. SILVERTHORN ET AL., supra note 215, at 658; Robert J. Sullivan, Accepting Death Without Artificial Nutrition or Hydration, 8 J. GEN. INTERNAL MED. 220, 221-22 (1993). A complaint of thirst should not be construed as a desire to drink unless the patient specifically asks for that. Instead, the patient should be attended to with mouth care such as ice chips, small sips of water, treatment of local mouth infections, mouthwash, and brushing. See infra note 249. 223. SILVERTHORN ET AL., supra note 215, at 666-67, 670-71. 224. Id. 225. Id. 226. See Id. at 670; Christie P. Thomas & Khaled Hamawi, Metabolic Acidosis, http://emedicine.medscape.com/article/242975-overview (last updated Sept. 16, 2009). The blood is acidic because of increased hydrogen. The higher the concentration of hydrogen, the lower the pH. SILVERTHORN ET AL., supra note 215, at 670. 394 Widener Law Review [Vol. 17: 363 dehydration.227 But respiratory compensation is limited to balancing slight forms of acidosis, not those severe forms as found in people who cease eating and drinking entirely.228 At the twenty-four to forty-eight hour mark, when the body has exhausted its carbohydrate stores, it begins to metabolize muscle tissue.229 Although this process sounds painful, it actually often has the opposite effect. When the body metabolizes muscle, molecules classified as ketones are released into the bloodstream, sending the body into a phase called ketosis or ketonemia.230 Ketosis causes many people to enter a state of euphoria.231 It has also been credited with impairing hunger, relieving pain, and increasing the quality of life for the dying person.232 The euphoric state experienced by patients as a result of ketosis can last for several days or longer, depending on the pre-VSED physical state of the patient.233 Throughout this time, patients are able to interact with family and friends, tell stories, and enjoy life’s last moments.234 Eventually, the cells in the brain, which require water and ions to function, lose the ability to exchange molecules with their surrounding environment due to the imbalance of water and ions caused by dehydration.235 This causes the brain cells to become less excitable, allowing the person to slip into a permanent coma.236

227. SILVERTHORN ET AL., supra note 215, at 666 (stating that “[c]hanges in ventilation can correct disturbances in acid-base balance, but they can also cause them.”). 228. Id. at 663 (noting that the only way to compensate for severe dehydration is by fluid intake). 229. Byock, supra note 160, at 11 (noting a “shift from adipose to protein metabolism”). 230. Id. at 9. This process is distinct from the process which occurs in diabetics. That process is also referred to as metabolic acidosis, but the mechanism is different. SILVERTHORN ET AL., supra note 215, at 670-71. 231. See CHABOT, supra note 8, at 22, 30, 45; MERCK MANUAL, supra note 93, at 2766. See also Byock, supra note 160, at 9; Huffman & Dunn, supra note 158, at 836; Printz, supra note 206, at 700; Louise A. Printz, Is Withholding Hydration a Valid Comfort Measure in the Terminally Ill?, GERIATRICS, Nov. 1988, at 84, 85; Paul C. Rousseau, How Fluid Deprivation Affects the Terminally Ill, RN, Jan. 1991, at 73, 73-74. 232. See MERCK MANUAL, supra note 93, at 2766; Byock, supra note 160, at 9. Voluntarily stopping eating and drinking is a flexible process that allows people to be in control of their own death. It is recommended, however, that people who choose VSED quit eating and drinking cold-turkey because taking in small amounts of food and drink prevents ketosis and prohibits the euphoric and analgesic effects of the onset of ketosis. See infra note 274. 233. Presumably, if a person is well hydrated before choosing to stop eating and drinking, it will take longer for the body to deplete its water and sugar stores. If the person is frail and already dehydrated, the VSED process would be shorter. See supra note 212. 234. See Eddy, Conversation, supra note 192, at 181; Schwarz, supra note 81, at 55 (“Once oral intake stops, the patient usually remains wakeful and responsive for several days . . . .”); Schwarz 2007, supra note 40, at 1292. See also HELEN NEARING, LOVING AND LEAVING THE GOOD LIFE 183-85 (1992). 235. In healthy, well hydrated humans, the brain, liver, and kidneys work in harmony to maintain the precise equilibrium of water that keeps us alive. Each human cell requires water to have the proper balance of ions (mainly sodium, potassium, and calcium) so that it can

2011] Voluntarily Stopping Eating and Drinking 395

The ultimate cause of death in a dehydrated person is usually a cardiac arrhythmia.237 A cardiac arrhythmia is any type of irregular heartbeat.238 In many circumstances, arrhythmias have little to no impact on the human body.239 However, in some situations, an arrhythmia can cause death.240 Cardiac tissue relies on electric potentials to make the heart pump.241 During dehydration, the body loses the ability to generate these electric impulses because of ion imbalances, making the heart unable to pump normally.242 This inability to pump causes missed heart beats, which, by definition, are cardiac arrhythmias. The ultimate cardiac arrhythmia occurs when the dying person is in a coma and experiencing euphoria incident to ketosis.243 The comatose state would prevent the patient from feeling any pain.244

3. VSED Involves Very Little Pain

Death by VSED involves very little pain, if any.245 In fact, “[t]he general impression among hospice clinician[s] is that starvation and dehydration do not contribute to suffering among the dying and might actually contribute to a comfortable passage from life.”246

function and communicate with other cells. SILVERTHORN ET AL., supra note 215, at 129-31, 642, 659. Dehydration has physical benefits, including: (1) decreased urine output; (2) less nausea and vomiting; and (3) less peripheral edema and pressure sores. Sullivan, supra note 222, at 221- 22; Taylor, supra note 143, at 271. 236.. SILVERTHORN ET AL., supra note 215, at 252-53, 269, 642, 663 (explaining that action potentials are significantly affected by osmolarity and that decreases in pH (as in acidosis) cause neurons and the central nervous system to fail for an inability to create those action potentials); Thomas & Hamawi, supra note 226 (“Coma and hypotension have been reported with acute severe metabolic acidosis”). 237. Byock, supra note 160, at 12; Sullivan, supra note 222, at 222. 238. SILVERTHORN ET AL., supra note 215, at 483. 239. Id. at 484. 240. Id. 241. See id. at 472-78. 242. See Lantz v. Coleman, No. HHDCV084034912, 2010 WL 1494985, at *11 (Conn. Super. Ct. Mar. 9, 2010). 243. See supra notes 233-42 and accompanying text. 244. Id. 245. See Candace Jans Meares, Terminal Dehydration: A Review, AM. J. HOSPICE & PALLIATIVE CARE, May-June 1994, at 11, 13. 246. Byock, supra note 160, at 8. See also Huffman & Dunn, supra note 158, at 836 (noting other benefits such as “less coughing, choking, and shortness of breath”) (citations omitted); Molrine, supra note 213, at 4 (listing numerous benefits, including: (1) “[c]alorie deprivation from terminal starvation results in a partial loss of sensation, adding to the patient’s comfort during the dying process;” (2) “[t]he combined effects of starvation and dehydration cause toxin buildup and body chemistry changes which stimulate the production of natural endorphins;” (3) “[t]he resultant mild euphoria may also act as a natural anesthetic to the central nervous system, blunting pain and other noxious symptoms, reducing narcotic requirements;” and (4) “[b]ecause terminal dehydration decreases total body water, it can have potential beneficial effects and thus facilitate a peaceful death.”) 396 Widener Law Review [Vol. 17: 363

Expectedly, many patients do report feelings of hunger and thirst in the first few days. These appear to be the only true side effects of VSED.247 To address these symptoms, the medical profession calls for excellent oral care.248 Specifically, caregivers of patients who choose VSED should provide mouth care involving swabbing the mouth, giving ice chips, and applying lip balm to keep lips supple and free from cracks.249 This type of care prevents and remedies the symptom of thirst, the symptom most notably associated with dehydration.250 In addition to oral care, patients who choose VSED are likely to need two other forms of palliative care. First, for the many VSED patients who are physically ill, pain medication may be necessary to alleviate the pain of their

247. See, e.g., Byock, supra note 160, at 11 (“The literature is consistent on two points: a) rarely does fasting cause any discomfort beyond occasional and transient hunger, and b) symptoms referable to dehydration are few–mostly dry oral and pharyngeal mucous membranes–and are readily relieved by simple measures.”); Schwarz 2007, supra note 40, at 1291. The occasional side effects of VSED include delirium and agitation. Schwarz, supra note 81, at 55. Other potential burdens such as confusion, restlessness, and neuromuscular irritability can be addressed with palliative care. See Huffman & Dunn, supra note 158, at 836. But see Cantor & Thomas, supra note 27, at 95 n.42 (“Death by dehydration is not always a tranquil process.”). Although, what has been recognized as delirium is likely, in fact, simply a state of euphoria that the dying person experiences due to ketoacidosis and endorphin releases in the brain. See Stinson et al., supra note 162, at 41. 248. See BERNAT, supra note 9, at 215 (“Dry mouth, the major symptom of dehydration, can be relieved adequately by ice chips, methyl cellulose, artificial saliva, or small sips of water insufficient to reverse progressive dehydration.”) (citing Robert M. McCann et al., Comfort Care for Terminally Ill Patients: The Appropriate Use of Nutrition and Hydration, 272 JAMA 1263 (1994)); ANTHONY RUDD ET AL., STROKE 69 (2d ed. 2005); ALEXANDER WALLER & NANCY L. CAROLINE, HANDBOOK OF PALLIATIVE CARE IN CANCER 135-46 (2d ed. 2000). See also J. Andrew Billings, Comfort Measures for the Terminally Ill: Is Dehydration Painful?, 33 J. AM. GERIATRICS SOC’Y 808, 810 (1985); Huffman & Dunn, supra note 158, at 838; Robert J. Miller, Hospice Care as an Alternative to Euthanasia, 20 L. MED. & HEALTH CARE 127, 127 (1992); Phyllis Schmitz, The Process of Dying With and Without Feeding and Fluids by Tube, 19 L. MED. & HEALTH CARE 23, 24 (1991); Joyce V. Zerwekh, Should Fluid and Nutritional Support be Withheld from Terminally Ill Patients?, AM. J. HOSPICE CARE, July-Aug. 1987, at 37, 38. 249. See H Ltd v J & Anor [2010] SASC 176 ¶ 98 (Austl.) (holding that the provider “is under no duty, and has no lawful justification to act to hydrate [a resident], except for such incidental hydration as may be indicated in connection with oral hygiene or the use of mouth swabs to palliate pain and discomfort . . .”); FRIENDS AT THE END, supra note 25, at 9-10 (describing, in addition to recommending nose, eye, and face care, four methods of mouth care: (1) refreshing the mouth; (2) saliva stimulating products; (3) saliva substitutes; and (4) cleansing to prevent fungal infection); TERMAN, supra note 75, at 102-05 (describing comfort care for those who refuse food and fluid); Cantor & Thomas, supra note 27, at 95; Molrine, supra note 213, at 5. 250. See CHABOT, supra note 8, at 30 (“If the mouth can be kept lubricated, it appears that the feeling of thirst can be tolerated.”); id. at 32-33 (summarizing the “main methods and products used in mouth care”); Cantor & Thomas, supra note 27, at 95. Some hospices use a dry sponge dipped in the patient’s favorite liquid. But this is inappropriate because the liquid is aqueous. See infra Part III.D (death by “bad” dehydration). It is preferable to use a non- aqueous organic base such as glycerin or sprays with methyl cellulose. See supra note 248.

2011] Voluntarily Stopping Eating and Drinking 397 underlying illness.251 Medical professionals who specialize in palliative care may provide sufficient medication to patients at this stage, especially considering the patient’s choice to hasten death.252 The ability to have palliative care readily available throughout the VSED process contributes to the overall quality of death for people who choose VSED.253 Second, competent and incompetent patients also require comfort care during the course of VSED. This comfort care is similar to the typical care given to the elderly or sick. It varies from patient to patient, but can certainly include turning, bathing, and attending to the requests of the person.254 In short, pain management combined with appropriate comfort care make VSED an end-of-life option that carries with it either very little or no pain.255 But this means that patients choosing VSED usually rely on caregivers to provide three types of care. First, patients need mouth care such as tooth brushing and swabbing. Second, they may need pain and other medication. Third, they may need help with everyday hygiene or anything else that makes the patient comfortable.

4. VSED Allows Patients to Avoid Suffering

The little pain associated with dying by VSED is not only easily mitigated but it is also a sharp contrast to the pain and suffering felt by persons dying of illnesses such as cancer.256 Indeed, people with cancer can choose VSED as a way to hasten death. VSED allows cancer patients or those with other illnesses to choose death prior to feeling the full effects and pain of a terminal illness. Furthermore, VSED not only provides for a less painful death, but it can also provide for a more meaningful and independent experience at the end of life.257 Patients choosing VSED can die at home rather than in a hospital or

251. See Schwarz 2007, supra note 40, at 1291. 252. See Bernat et al., supra note 28, at 2727. For those patients who are not physically ill, but rather, are simply mentally incompetent and have made the non-contemporaneous decision to stop eating and drinking, medical staff can provide pain medication if unexpected symptoms arise. 253. This care would involve pain medication in addition to providing ice chips, mouth swabs, and lip balm to relieve oral symptoms of dehydration, along with everyday care such as bathing, turning, and general comfort care. Cantor & Thomas, supra note 27, at 95. 254. See BERNAT, supra note 9, at 216 (“Once a dying patient has refused hydration and nutrition, the physician has the continued responsibility to maintain her comfort. Comfort measures include proper mouth care, suppression of dyspnea, and provision of adequate analgesia.”). This sort of care could actually be less demanding because, for example, the patient’s diapers would need to be changed less frequently. 255. See Joyce V. Zerwekh, The Dehydration Question, NURSING, Jan. 1983, at 47, 47-50. 256. This concept applies to other diseases and terminal illnesses as well. 257. Zail S. Berry, Responding to Suffering: Providing Options and Respecting Choices, 38 J. PAIN & SYMPTOM MGMT. 797, 798-99 (2009); WARNOCK & MACDONALD, supra note 138, at 103, 107. “Advantages of this method are its accommodation of patient ambivalence, relative ease of maintaining comfort through the process, and little risk of impulsive or hasty action.” Id. at 797. The duration of the VSED process has advantages of: (a) opportunity for reconsideration; and (b) family interaction. BERNAT, supra note 9, at 216. On the other hand, the duration of time 398 Widener Law Review [Vol. 17: 363 hospice setting. This will likely contribute to a more comfortable death in a familiar setting.258 Quality of life and death is furthered by VSED even more so by the fact that, since it is a natural option, it requires no intervention of doctors or lawyers.259 Unlike physician-assisted suicide, there is no waiting period after choosing to stop eating and drinking. 260 VSED allows patients to spend the time with family and friends instead, with “an improved sense of confidence that death will occur peacefully.”261 Moreover, even if VSED is not used, just knowing that the option is available gives comfort and control, or a security blanket.262

D. VSED Dehydration versus “Bad” Dehydration

We have already established that the dehydration associated with VSED results in little to no pain. It results in only mouth discomfort and/or hunger that can be readily minimized and eliminated through simple established treatments. Still, dehydration has negative connotations that run strong and deep. For example, in some contexts withholding food and water can constitute torture.263 Accordingly, it is useful to specifically distinguish VSED from more popular conceptions of “bad” dehydration. for the VSED to succeed is a noted disadvantage. Berry, supra, at 797; Dan W. Brock, Physician- Assisted Suicide as a Last-Resort Option at the End of Life, in PHYSICIAN-ASSISTED DYING: THE CASE FOR PALLIATIVE CARE AND PATIENT CHOICE 130, 131 (Timothy E. Quill & Margaret P. Battin eds., 2004); Miller & Meier, supra note 138, at 561 (noting that the “relatively long interval” makes VSED “seem less humane” and “burdensome and stressful” to family). 258. See Andrea Gruneir et al., Where People Die: A Multilevel Approach to Understanding Influences on Site of Death in America, 64 MED. CARE RESEARCH & REV. 351, 352 (2007); Quill & Byock, supra note 36, at 412 (anecdotal evidence that some patients and their families would prefer death to occur at home); Alexi A. Wright et al., Place of Death: Correlations with Quality of Life of Patients With Cancer and Predictors of Bereaved Caregivers’ Mental Health, 28 J. CLINICAL ONCOLOGY 4457, 4457, 4461-63 (2010). 259. See Ganzini et al., supra note 38, at 360 (noting that VSED “does not necessarily require the participation of a physician.”) (footnotes omitted); Quill et al., Palliative Options, supra note 39, at 50. But cf. supra note 164 (collecting sources that recommend medical supervision of VSED). 260. See, e.g., supra notes 117 to 125. Some argue that another advantage is the absence of mandatory procedures; this allows patients to enjoy the final days and weeks of life, rather than subjecting themselves to court proceedings and psychiatric evaluations. Byock, supra note 160, at 13. While we do not fully articulate them here, VSED should have some analogous safeguards. See, e.g., supra notes 171 and 176 (on assuring voluntariness). 261. Byock, supra note 160, at 11. 262. Berry, supra note 257, at 799 (“Many more patients receive a benefit from the discussion itself, with the knowledge of their own control . . . .”); Donald G. McNeil Jr., First Study on Patients Who Fast to End Lives, N.Y. TIMES (July 31, 2003), http://www.nytimes.com /2003/07/31/us/first-study-on-patients-who-fast-to-end-lives.html; see Quill, supra note 25, at 20 (“[T]he availability of such an escape may be much more important to many patients than its actual use.”). 263. People v. Lewis, 16 Cal. Rptr. 3d 498, 501 (Ct. App. 2004). Accord CAL. PENAL CODE § 206 (West 2010).

2011] Voluntarily Stopping Eating and Drinking 399

Death by dehydration sounds terrifying.264 Thinking about it conjures images of suffering persons pleading for water and food while stranded in desiccated deserts, on deserted tropical islands, or in prisoner camps. These perceptions could be prompted, in part, by the media, television, and films. Many Americans are familiar with Save the Children print and television ads featuring Sally Struthers. The ads display “horrific images of fly-covered starving children.”265 Dehydration is perceived as a horrible death filled with intense uncontrollable suffering.266 Indeed, some of this perception is deliberately propagated by those with certain political agendas, such as promoting Catholicism267 or assisted suicide.268 Despite the misguided belief of the general population (and even many healthcare professionals)269 that a death by dehydration would come with excruciating pain, there is compelling evidence that patients who use

264. See Lynn & Childress, supra note 142, at 20 (“[T]he common image of severe malnutrition or dehydration is one of unremitting agony.”). 265. MICHAEL MAREN, THE ROAD TO HELL: THE RAVAGING EFFECTS OF FOREIGN AID AND INTERNATIONAL CHARITY 137 (1997). 266. See, e.g., Brophy v. New England Sinai Hosp., 497 N.E.2d 626, 641 n.2 (Mass. 1986) (“The [probate] judge found that death by dehydration is extremely painful and uncomfortable for a human being.”); ORAL FEEDING DIFFICULTIES, supra note 172, at 19 (“It is commonly believed that death from absent nutrition or hydration is distressing or painful for the patient.”); Sam Hjelmeland Ahmedzai, Dehydration and Perfect Care at the End of Life, THE TIMES (U.K.) (Oct. 2, 2009), http://www.timesonline.co.uk/tol/comment/letters/ article6857395.ece (“A ‘care’ pathway that effectively leads to the vast majority of terminal patients not being hydrated stands to be seen as inhumane.”); Natalie Paris et al., 'Right to Die' Fight Abandoned, TELEGRAPH (Apr. 19, 2007), http://www.telegraph.co.uk/news/uknews/ 1549067/Right-to-die-fight-abandoned.html (reporting that Kelly Taylor abandoned an attempt to starve herself because “it became too painful”); Simon Johnson, Retired GPs Advise Terminally Ill on Suicide by Starvation, TELEGRAPH (Mar. 8, 2009), http://www.telegraph.co.uk/health/ healthnews/4957436/Retired-GPs-advise-terminally-ill-on-suicide-by-starvation.html (reporting on the case of Efstratia Tuson). 267. Medical Decisions at the End of Life, supra note 139 (a pro-life Christian educational ministry stating that “[d]eath by starvation and dehydration is painful and inhumane.”). 268. See SYME, supra note 138, at 119-20; Chug et al., supra note 148 (“[I]t was sad that Mrs. Page had had [sic] to starve herself to achieve the end she wanted.”) (attributing language to voluntary euthanasia activist Lesley Martin); Nicky Park, Disabled NZ Woman Starving Herself, SYDNEY MORNING HERALD (Mar. 25, 2010), http://news.smh.com.au/breaking-news- world/disabled-nz-woman-starving-herself-20100325-qyp4.html (“‘It's very tragic that a person has to go down that path . . . a final ‘grim process’ to death.’”) (quoting Australian euthanasia campaigner Philip Nitschke); Templeton, supra note 134; Fergus Walsh, Locked-In Man Seeks Right to Die, BBC NEWS (July 19, 2010), http://www.bbc.co.uk/news/health-10689294 (while recognizing a “lawful means of ending his life is by starvation - refusing food and liquids,” Tony Nicklinson initiated legal proceedings to clarify whether his wife could legally inject him with a lethal dose of drugs). Cf. Bill Johnson, Fighting for a Right Way to Die, DENVER POST, Nov. 9, 2009, at A15, available at http://www.denverpost.com/news/ci_13744692 (“‘I don't want another human being to die the way Kathy did. . . . That is inhuman.’”) (quoting Sally Odenheimer). 269. See Norma House, The Hydration Question: Hydration or Dehydration of Terminally Ill Patients, PROF’L NURSE, Oct. 1992, at 44, 46; P.P. Marin et al., Attitudes of Hospital Doctors in Wales to Use of Intravenous Fluids and Antibiotics in the Terminally Ill, 65 POSTGRADUATE MED. J. 650, 651 (1989). 400 Widener Law Review [Vol. 17: 363 dehydration as a way to hasten death feel little to no pain, and that dehydration can actually allow a person to die more comfortably.270 While salient, these bad deaths are distinguishable on several grounds. First, these deaths were likely involuntary. Whether in a prison camp or on a deserted island, the person probably did not choose to be deprived of water to hasten death. Second, the deaths were not accompanied with the comfort care discussed above that is essential for a good death by dehydration.271 Third, people in these “bad” starvation scenarios suffer from a kind of semi- starvation rather than the complete cessation associated with VSED.272 During this semi-starvation, the person continues to eat or drink small amounts of food or fluids.273 This prolongs the process and prevents the body from entering into ketosis, the euphoric state that makes a death by VSED more comfortable.274

IV. VSED IS A LEGAL END-OF-LIFE OPTION

Non-lawyer supporters of VSED have professed its legality time and time again, both in the literature and in practice.275 It has been officially endorsed

270. See supra Part III.C; Molrine, supra note 213, at 4. 271. See supra notes 248-254. 272. Byock, supra note 160, at 9; Stinson et al., supra note 162, at 41-42 (noting that a patient lived for twenty-one days after choosing VSED because he drank soda throughout the time even though this intake might cause pain and prolong the dying process); CHABOT, supra note 8, at 39 (“[T]he feeling of hunger often disappears in 2-4 days, provided the person drinks water only.”). Molrine, supra note 213, at 5 (stating that “feeding even small amounts can prevent ketonemia and prolong the sense of hunger . . . . Indeed hunger rapidly reappears when ketosis is relieved by ingesting small amounts of carbohydrate . . .”) 273. See LESTER I. TENNEY, MY HITCH IN HELL: THE BATAAN DEATH MARCH 51-52, 70, 92 (First Memories of War ed. 2007) (United States prisoners only received small amounts of water); GENE BOYT, BATAAN: A SURVIVOR’S STORY 131-35 (2004); HARRY SPILLER, AMERICAN POWS IN WORLD WAR II 15, 40, 55, 74, 174 (2009). See also Stefan Simanowitz, The Body Politic: The Enduring Power of the Hunger Strike, 292 CONTEMP. REV. 324, 325-26 (2010). A recent film compellingly depicts the hunger strike by Bobby Sands and other IRA prisoners during their 1981 incarceration in England. HUNGER (Icon Ent. 2008). Both the length of the strike (nine weeks) and its gruesomeness were due to the fact that it was not a complete cessation of food and fluid. 274. See Timothy Quill & Robert M. Arnold, Responding to a Request for Hastening Death, EPERC (July 2006), http://www.eperc.mcw.edu/fastFact/ff_159.htm (last modified Apr. 2009) (“[B]e sure everyone understands the importance of complete cessation of drinking or else the process can take months rather than weeks.”); Stinson et al., supra note 162, at 41-42 (noting that a patient lived for twenty-one days after choosing VSED because he drank soda throughout the time, even though this intake might cause pain and prolong the dying process); Sullivan, supra note 222, at 222 (“In contrast to the intense discomfort associated with semistarvation, total starvation is associated with euphoria. Instead of pain, food deprivation may induce analgesia.”) (footnotes omitted). 275. See supra note 138.

2011] Voluntarily Stopping Eating and Drinking 401 by professional medical associations.276 Indeed, VSED is already practiced all over the country, probably under the assumption that it is legal in some way.277 Despite this relative prevalence, the practice is thought to be quite rare.278 This is due, in part, to the fact that VSED’s legal status has yet to be thoroughly explored in a way that would give medical providers and prospective users (and their families) some peace of mind when exploring this end-of-life option.279 Legal uncertainties revolving around VSED lead some caregivers to undermine a patient’s decision to stop eating and drinking.280 Either the option is not offered, or, if it is requested, the request is ignored. Some would-be caregivers coerce and persuade patients to change their minds about VSED.281 Settling the legal status of this exit option could give caregivers

276. See, e.g., AM. MED. WOMEN’S ASS’N, POSITION PAPER ON AID IN DYING (Sept. 9, 2007). Some organizations are even prepared to stop oral hydration in children. Don Brunnquell, Medically Provided Nutrition and Hydration, CHILDREN’S HOSPITALS AND CLINICS OF MINNESOTA, http://www.childrensmn.org/web/hospice/191269.pdf (last visited Feb. 6, 2011). 277. See BERNAT, supra note 9, at 215 (“Contemporary reviews of the management options available to terminally ill patients now consider [VSED] as a major option.”) (citing Timothy E. Quill et al., Palliative Options of Last Resort: A Comparison of Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-Assisted Suicide, and Voluntary Active Euthanasia, 278 JAMA 2099 (1997)); Miller & Meier, supra note 138, at 559. Support for VSED, at least among hospice workers, is very high. Harvath et al., supra note 135, at 239. 278. See Quill, supra note 25, at 20 (“There are no reliable data about the frequency of voluntarily stopping eating and drinking in the United States, although the practice is thought to be rare [and accounts for less than one percent of deaths in hospice programs in Rochester, New York].”). 279. See supra Part III. Legal uncertainty is not the only obstacle to more widespread use of VSED. Providers and families often just feel “a little uncomfortable” with it. Jacobs, supra note 147, at 325. This emotional reaction is hardly unique to VSED. See Neil J. Farber et al., Physicians’ Decisions to Withhold and Withdraw Life-Sustaining Treatment, 166 ARCHIVES INTERNAL MED. 560, 563 (2006). In any case, the primary purpose of this article is to clarify the legal situation. There appears to be a growing recognition among healthcare providers that, for some patients, VSED is a legitimate and appropriate end-of-life option. See supra Part III.C. But these same providers may not practice what they preach because of legal concerns. 280. See, e.g., H Ltd v J & Anor [2010] SASC 176 ¶ 21 (Austl.) (“H Ltd has refrained from giving an undertaking to comply with [its resident’s] direction . . . . These proceedings are brought to resolve the resulting controversy and uncertainty as to whether such rights as J may have to personal integrity and self-determination must be respected by H Ltd.”); Quill, supra note 25, at 22 (“Some patients may be denied access to [VSED] because clinicians or institutions are reluctant to use [it] . . . .”); Johnson, supra note 31, at 1030 (discussing risk averseness and “that doctors will avoid . . . particular treatments that in fact are legitimate”); Quill et al., Palliative Options, supra note 39, at 64 (VSED “may not be readily available because some physicians may continue to have moral objections and legal fears about these options.”). Some providers recognize VSED as a good option for their patients but fail to provide it due to “defensive medicine” legal concerns. See Johnson, supra note 31, at 974-75; Tia Ghose, Paralyzed Accident Victim Fights for Right to Die, MILWAUKEE J. SENTINEL (Nov. 28, 2010), http://www.jsonline.com/features/health/110948384.html (reporting that when quadriplegic Dan Crews “initiated a hunger strike . . . his nurses quit”). We hope that this article helps serve one of the classic responses to such concerns: education. 281. See Miller & Meier, supra note 138, at 561 (“Patients who choose this means . . . remain vulnerable to persuasive pressure from family members or physicians to change their mind.”). 402 Widener Law Review [Vol. 17: 363 some legal and moral footing upon which support of a VSED patient can be based. The following four subsections provide this much needed legal analysis. First, we provide an affirmative reason for the lawful nature of VSED, rooted in common law battery. Second, we ground a right to VSED in the well established right to refuse medical treatment. Third, we defend VSED against charges that it constitutes abuse and neglect. Fourth, we defend VSED against charges that it constitutes assisted suicide.

A. Disallowing VSED Can Constitute a Battery

The simplest and most direct source of legality of VSED is the common law theory of battery.282 Battery is the nonconsensual, intentional touching of a person with intent to harm or offend.283 Although the most common batteries are probably those which are incident to physical altercations, what actually constitutes battery is generally far more expansive. Force feeding and even attempted force feeding can also constitute a battery.284

1. Battery at Common Law

Touching in battery must be nonconsensual.285 This lack of consent can be express or implied, verbal or non-verbal.286 For example, a person could

282. See generally MEISEL & CERMINARA, supra note 88, at 2-21 – 2-23, 11-10 (discussing how the right to refuse is grounded in a right to refuse unwanted intrusions and that remedies include actions for assault, battery, and intentional infliction of emotional distress); Shepherd 2006, supra note 26, at 337:

The answer . . . is not to be found . . . in likening it or distinguishing it from medical treatment or tube feeding. The basis for the . . . right to refuse tube feeding is . . . that tube feeding against a patient’s will is an intrusion into the bodily integrity of the individual. . . . The critical issue is . . . whether it is unwanted, whether it is in a sense forced.

Id. (footnote omitted); Thomas I. Cochrane, Unnecessary Time Pressure in Refusal of Life-Sustaining Therapies: Fear of Missing the Opportunity to Die, AM. J. BIOETHICS, Apr. 2009, at 47, 51 (‘[T]he proper defense of the right to refuse [oral hydration and nutrition] . . . [is to recognize that] patients with decisional capacity have the right to refuse any unwanted intervention . . . because of the right against unwanted interference . . . .”); id. at 53 (“The foundation of the right to refuse . . . does not rest on the ‘medical’; it rests on the ‘unwanted.’ The word medical (or artificial) is unnecessary, given that the right to self-determination entails a right to refuse any unwanted interventions whatsoever.” (emphasis in original)). 283. RESTATEMENT (SECOND) OF TORTS § 13 (1965); id. § 13 cmt. d. 284. Force feeding is often by tube. See, e.g., In re Caulk, 480 A.2d 93, 99 (N.H. 1984) (Douglas, J., dissenting); Sondra S. Crosby et al., Hunger Strikes, Force-Feeding, and Physicians’ Responsibilities, 298 JAMA 563, 564 (2007) (“Force-feeding . . . involves the use of force and physical restraints . . . and the placement of a nasogastric tube . . . .”). 285. RESTATEMENT (SECOND) OF TORTS § 13 cmt. d. (1965).

2011] Voluntarily Stopping Eating and Drinking 403 affirmatively say “do not touch me,” which would expressly refuse consent to the touching. A person could also say nothing at all, but by his or her conduct or course of action indicate either consent or a refusal to consent.287 For example, when a person extends his or her arm to shake another person’s hand, he or she is impliedly consenting to the handshake. Similarly, when a person enters a crowded New York City subway train, he or she impliedly consents to being touched, at least to some degree, by other passengers on the train. On the other hand, if in response to an outstretched hand, the person backs away, he impliedly refuses consent to the handshake. The touching covered by battery is broad. The contact does not have to be direct person-to-person contact. The tortfeasor can touch something that is connected to or intimately associated with a person’s body, like a cane or a plate.288 Similarly, the tortfeasor himself does not have to contact the person, but rather, the tortfeasor can cause an object to touch the person. This could be in the form of something as simple as throwing a tennis ball at a person, or as intangible and amorphous as a cloud of smoke contacting a person.289 The harm or offensiveness caused by a battery also has a broad scope.290 If the person committing the battery knows, or should know, that the touching would be offensive to the particular person, then this element has been satisfied even if the procedure is harmless or beneficial.291

2. Undermining VSED Can Constitute a Battery

Some actions taken by caregivers to undermine VSED can certainly constitute a battery. These actions include force feeding, and even worse, inserting a feeding tube against the wishes of the patient.292 In practice, either

286. Id. § 892 (1979); PROSSER AND KEETON ON THE LAW OF TORTS § 18 (W. Page Keeton et al. eds., 5th ed. 1984). 287. RESTATEMENT (SECOND) OF TORTS § 892 (1979). 288. See Fisher v. Carrousel Motor Hotel, Inc., 424 S.W.2d 627, 629-30 (Tex. 1967) (affirming battery verdict of compensatory and punitive damages where defendant snatched a plate out of plaintiff’s hand but never touched plaintiff himself); Piggly-Wiggly Alabama Co. v. Rickles, 103 So. 860, 861-62 (Ala. 1925) (affirming jury verdict for battery where defendant touched plaintiff’s clothing). 289. See, e.g., Graham v. Gunter, No. 93-1186, 1993 WL 432565, at *2 (10th Cir. Oct. 27, 1993) (allowing battery claim for exposure to secondhand smoke). 290. RESTATEMENT (SECOND) OF TORTS § 15, cmt. a (1965) (“There is an impairment of the physical condition of another’s body if the structure or function of any part of the other’s body is altered to any extent even though the alteration causes no other harm.”); id. § 19 (“A bodily contact is offensive if it offends a reasonable sense of personal dignity.”). 291. See Duncan v. Scottsdale Med. Imaging, 70 P.3d 435, 438-39 (Ariz. 2003); Roberson v. Provident House, 576 So. 2d 992, 994 (La. 1991); Estate of Leach v. Shapiro, 469 N.E.2d 1047, 1051(Ohio Ct. App. 1984); Krause v. Bridgeport Hosp., 362 A.2d 802, 806 (Conn. 1975); Schloendorff v. Soc’y of N.Y. Hosp., 105 N.E. 92, 93 (N.Y. 1914); Rolater v. Strain, 137 P. 96, 97 (Okla. 1913); Pratt v. Davis, 79 N.E. 562, 563 (Ill. 1906); Mohr v. Williams, 104 N.W. 12, 15-16 (Minn. 1905). Cf. Cobbs v. Grant, 502 P.2d 1, 7-8 (Cal. 1972). 292. Force feeding is often by tube. Cf. In re Caulk, 480 A.2d 93, 99 (N.H. 1984) (Douglas, J., dissenting); Crosby et al., supra note 284, at 564 (“Force feeding . . . involves the use of force and physical restraints . . . and the placement of a nasogastric tube . . . .”). In that 404 Widener Law Review [Vol. 17: 363 of these actions might be accomplished through physical or chemical restraints.293 Slightly more attenuated, but perhaps still a battery, is the attempt to undermine VSED by placing food within a person’s reach when the caregiver clearly knows that the patient is voluntarily refusing food.

a. Force Feeding is Battery

Force feeding a person who is voluntarily refusing food and fluid is battery. There is contact; it is unwanted; and it is harmful and/or offensive. First, the force-feeder intends to touch a person’s lips with food. This touching is enough for battery because even if the tortfeasor’s body does not touch the person, the tortfeasor still causes the food to touch the person. His or her conduct would not be materially different from the tortfeasor who fires a gun at a person, causing a bullet to come in contact with that person.294 Second, there is no consent in this situation, neither expressly nor impliedly. A person who opts for VSED expressly refuses consent to be fed because the person affirmatively chooses not to eat at all. Force feeding, by its very nature, cannot be consensual. If one must force another to participate in an action, that action cannot be consensual.295 Moreover, courts have held that contact with unwanted food can constitute a battery.296 Third, force feeding is most certainly harmful or offensive to the VSED patient. While social norms would generally indicate that feeding someone is neither harmful nor offensive, VSED falls outside of this norm. Force feeding a person who has chosen VSED can undo the effects of this exit option and case, the patient has a clear right to refuse it. Where a patient’s decision to VSED is undermined by inserting a feeding tube, that is definitely a battery. Cf. Cantor 2006, supra note 25, at 421 (projecting “legal acceptance of VSED . . . grounded on the distasteful specter of forcing a competent, dying patient to receive ANH”); Lynn & Childress, supra note 142, at 18 (noting that gastronomy tubes, nasogastric tubes, and intravenous feeding all “commonly require restraining the patient, cause minor infections and other ill effects”). 293. See Lo & Dornbrand, supra note 174, at 402-03; Schwarz 2007, supra note 40, at 1291; Nevmerzhitsky v. Ukraine, App. No. 54825/00, 43 Eur. H.R. Rep. 32 ¶ 97-98 (2005) (characterizing the use of a mouth widener and handcuffs as “torture”). 294. See Wasson et al., supra note 172, at 466 (“[I]f they are refusing food staff cannot force them to eat as this would constitute assault.”); D. Robert McCardle & Sr. Diana Bader, Confronting Conflict: A Nursing Home Comes to Grips with an Elderly Patient’s Decision to Refuse Nutrition, HEALTH PROGRESS, Apr. 1991, at 31, 33. 295. See RESTATEMENT (SECOND) OF TORTS § 58 (1965); RESTATEMENT (SECOND) OF TORTS §§ 892B(3), 892B cmt. j. (1979). 296. See Morton v. Wellstar Health Sys., 653 S.E.2d 756, 758 (Ga. Ct. App. 2007) (holding that feeding a patient scrambled eggs would constitute battery, if physician had given orders for only clear liquids); Siegel v. Ridgewells, Inc., 511 F. Supp. 2d 188, 194 (D.D.C. 2007) (suggesting that coming into contact with unwanted food can constitute a battery). See also Michael H. Shapiro, Constitutional Adjudication and Standards of Review Under Pressure from Biological Technologies, 11 HEALTH MATRIX 351, 468 (2001) (stating that the capability of “[f]eeding a person by hand . . . does not necessarily mean that she will − or can legally be − force-fed. (To do so might be battery.)”).

2011] Voluntarily Stopping Eating and Drinking 405 cause the person pain. As discussed in Part III, lack of food and water causes a person to enter a euphoric state which results in natural pain relief.297 Any amount of food or drink consumed by a VSED patient can prolong the onset of, or reverse the effects of this state of ketoacidosis, thus causing harm.298 Force feeding is undoubtedly offensive to the VSED patient, since it deprives the person of dignity and autonomy in the decision to stop eating and drinking. Indeed, force feeding is not a dignified act.299 Furthermore, force feeding likely involves physically restraining the person, forcefully opening the person’s mouth, shoving food inside it, and forcing the person to chew and swallow against his will, especially if swallowing is accomplished by reflex. If forcing treatment upon a patient is “unacceptably inhumane,” it is “all the more so if the patient were physically to resist.”300 While such measures are sometimes unnecessary because the person ultimately cooperates, such cooperation is often achieved through coercion and duress. For example, when Elizabeth Bouvia—a quadriplegic who wished to VSED— refused to eat,301 providers threatened her with a loss of smoking privileges and morphine unless she ate.302 Such consent does not change the fact that the unwanted touching is a battery. “Consent is not effective if it is given under duress.”303

b. Placing Food Near the VSED Patient Can Be a Battery

Sometimes, instead of force feeding, and even instead of the duress like that used against Elizabeth Bouvia, providers might attempt to manipulate a patient’s consent to resume eating and drinking by placing food near the patient.304 People choosing to voluntarily stop eating and drinking require a

297. See supra Part III.C. 298. See supra Part III.D. 299. Cf. Rochin v. California, 342 U.S. 165, 172 (1952) (finding that where officers sought to alter the contents of a suspect’s stomach and “struggle[d] to open his mouth,” it did “more than offend some fastidious squeamishness” but “shocks the conscience” and “is bound to offend even hardened sensibilities”). 300. Dan W. Brock & Joanne Lynn, The Competent Patient Who Decides Not to Take Nutrition and Hydration, in BY NO EXTRAORDINARY MEANS: THE CHOICE TO FORGO LIFE- SUSTAINING FOOD AND WATER 202, 204 (Joanne Lynn ed. 1986). See also WMA Declaration of Malta on Hunger Strikers, WORLD MED. ASS’N, (Oct. 14, 2006), http://www.wma.net/en/30publications/10policies/h31/index.html (“Forced feeding contrary to an informed and voluntary refusal is unjustifiable. . . . Forcible feeding is never ethically acceptable. Even if intended to benefit, feeding accompanied by threats, coercion, force or use of physical restraints is a form of inhuman and degrading treatment.”). 301. See supra notes 61-69. 302. GEORGE J. ANNAS, JUDGING MEDICINE 298 (1988). 303. RESTATEMENT (SECOND) OF TORTS § 892B(3) (1979). See also JAMES F. DRANE, CLINICAL BIOETHICS: THEORY AND PRACTICE IN MEDICAL ETHICAL DECISION-MAKING 127 (1994). 304. Telephone Interview with Judith Schwarz, Regional Clinical Coordinator, Compassion & Choices (Nov. 30, 2009). 406 Widener Law Review [Vol. 17: 363 significant amount of will power and support to maintain the decision.305 If food is placed in front of a person, sights and smells cause chemical reactions in the body that make the person salivate and feel hungry.306 This undermines the decision to VSED because it coerces the person to waver in his or her decision.307 Battery is established not only by contact with the person herself but also with an object connected to or intimately associated with the person. Thus, the action of placing food on the patient or in an area in close proximity to the patient could constitute a battery. For example, touching someone’s hat or umbrella would be enough contact for common law battery.308 Similarly, it is very likely that placing food on a person’s bed or on a table attached to the bed would constitute a battery. Again, all the elements of battery are satisfied. There is contact because of the intimate association with the bed and table, as discussed above. There is no consent to this contact because the VSED patient refuses to consent to consuming food and water by the very nature of his decision to stop eating and drinking. Finally, the contact is harmful or offensive because the person is trying to reach the goal of dying with dignity by choosing VSED. The mere fact that placing food very close to the person undermines that decision is enough to be both harmful to the mental wellbeing of the patient and offensive to his values. Of course, providers may bring food not to undermine the VSED decision, but rather to confirm that the patient wants to continue VSED. While the patient’s refusal must be respected, it is permissible to delay compliance to see whether the patient will change his or her mind.309

305. See Quill, supra note 25, at 21 (VSED “requires tremendous discipline not to drink if one is thirsty and capable of drinking . . . .”). 306. See KESSLER, supra note 141, at 35-40, 88; PAUL INSEL ET AL., NUTRITION 106-07 (4th ed. 2011). 307. See LAWRENCE D. ROSENBLUM, SEE WHAT I’M SAYING: THE EXTRAORDINARY POWERS OF OUR FIVE SENSES 82-84 (2010) (discussing new research that suggests even the weakest odors – unnoticeable to our conscious being – can have subtle influences over an individual’s thoughts and behavior); EUGEN BRUCE GOLDSTEIN, 1 ENCYCLOPEDIA OF PERCEPTION 63-64 (2010) (defining aromachology as the “scientific analysis of olfactory effects on mood, physiology, and behavior”). 308. See supra note 288. See also Gowri Ramachandran, Assault and Battery on Property, 44 LOY. L.A. L. REV. 253, 257 (2010) (exploring battery on a person’s “inorganic, discontinuous body”). 309. See MARK FAIRWEATHER & ROSY BORDER, LIVING WILLS AND ENDURING POWERS OF ATTORNEY 4 (2d ed. 2004) (explaining that while patients cannot refuse “‘the offer of’” food and drink, they can refuse food and drink itself); GEN. MED. COUNCIL, supra note 166, at 52 n.31 (“The offer of food and drink by mouth is part of basic care . . . and must always be offered to patients . . . . Food and drink can be refused by patients at the time it is offered . . . .”) (emphasis added); Brock & Lynn, supra note 300, at 209 (“[T]he most that is justified is temporary intervention . . . to ensure that the person’s choice is competently made and reflects a realistic understanding of his or her situation.”); Catherine Jenkins & Eduardo Bruera, Assessment and Management of Medically Ill Patients Who Refuse Life-Prolonging Treatments: Two Case Reports and

2011] Voluntarily Stopping Eating and Drinking 407

3. Battery is Not a Legal Cure-All

A cause of action in battery is the most legally sound theory establishing the legality of VSED, but there are limitations. If a person attempts to undermine the decision of another person to VSED by force feeding or placing food in an area intimately associated with the patient’s person, there is probably a good battery argument for why those actions are illegal, as discussed above. There are, however, many other ways in which caregivers and medical professionals can undermine a patient’s decision to VSED. The provider could never disclose the option to the patient in the first place. Or the provider could terminate the treatment relationship, leaving the patient to find a new provider. Consequently, the law of battery is probably not enough to completely protect a person’s right to choose VSED.

B. Not Allowing VSED Violates the Right to Refuse Medical Treatment

While battery is the simplest and most direct basis for the legality of VSED, it is not the only basis. An additional or alternative basis is the right to refuse medical treatment. A patient’s right to refuse medical treatment is grounded in common law, in constitutional law, and in statutory law. That right to refuse encompasses VSED because the administration of food and water to a patient is medical treatment that can be refused like any other medical treatment. Alternatively, even if the administration of hydration and nutrition is not technically medical treatment, it is sufficiently analogous that it should be treated the same way with respect to the right to refuse.

1. Right to Refuse Life-Sustaining Medical Treatment

A competent patient’s right to refuse medical treatment is “virtually absolute.”310 The right to refuse life-sustaining medical treatment (LSMT) is arguably derived from the United States Constitution, individual state constitutions and statutes, and common law theories.311 The right to refuse,

Proposed Guidelines, 14 J. PALLIATIVE CARE 18 (1998); N.M. CORR. DEP’T, HUNGER STRIKES AND PERSONAL FASTS, POLICY CD-172400, http://corrections.state.nm.us/policies/current/CD- 172400.pdf (last updated Mar. 31, 2010) (“During a hunger strike, the staff shall deliver three (3) meals per day to the inmate’s cell . . . .”) (requiring a mental health evaluation and requiring the prisoner to sign the “Inmate Acknowledgement of the Consequences of Refusing Food and/or Liquid” form and “Consent for Palliative Treatment” form). The line between informed consent and coercion, like the line between soft paternalism and hard paternalism, is fuzzy at best. But there certainly is such a line. See Thaddeus Mason Pope, Is Public Health Paternalism Really Never Justified? A Response to Joel Feinberg, 30 OKLA. CITY U. L. REV. 121, 129-30 (2005). Too-extended noncompliance in hopes that the patient will/may change his or her mind is not legitimate soft paternalism but illegitimate hard paternalism. 310. MEISEL & CERMINARA, supra note 88, at 2-15 (citing to several state court cases that hold that a competent patient has a right to refuse medical treatment); see also id. at 2-4 – 2- 5, 2-21 – 2-22. 311. Id. at 2-21, 2-27 – 2-33, 2-38 – 2-40; Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261, 269-78 (1990). 408 Widener Law Review [Vol. 17: 363 however, is also the offspring of battery.312 The theories of the right to refuse LSMT and battery are rooted in the same reasoning and policy: a person has the right to be free from bodily intrusion.313 The right to refuse LSMT first came in front of the United States Supreme Court in the case of Cruzan v. Director, Missouri Department of Health.314 Although the case turned on an evidentiary question and did not directly address the issue of whether there is a constitutional right to refuse, the case was widely interpreted as carving out this right.315 This interpretation likely stems from the fact that the Court assumed that the United States Constitution would permit a person to refuse LSMT because that refusal is probably a liberty interest and therefore protected as a fundamental right.316

2. VSED Is the Refusal of Medical Treatment

A patient’s right to refuse medical treatment is well established. Accordingly, we might take this as the major premise in a categorical syllogism: “All patients have the right to refuse medical treatment.” Therefore, if the provision of oral nutrition and hydration is medical treatment, then a patient has the right to refuse it.317 The object of this section is to establish the truth of the minor premise in this syllogism: “Oral nutrition and hydration is medical treatment.” It is initially worthwhile to observe that, in the few cases to directly confront the legality of VSED, courts have repeatedly accepted this premise in upholding patients’ rights to VSED. For example, New York Judge Donald H. Miller ruled that the Plaza Health and Rehabilitation Center was neither obligated nor empowered to force-feed G. Ross Henninger, a resident at Plaza Health who had been fasting to hasten his death.318 The judge based his decision on state law permitting patients to

312. Cruzan, 497 U.S. at 269-78; MEISEL & CERMINARA, supra note 88, at 2-21 – 2-23. 313. Cruzan, 497 U.S. at 269-78. 314. Id. at 261. 315. See RONALD DWORKIN, FREEDOM'S LAW: THE MORAL READING OF THE AMERICAN CONSTITUTION 130-43 (1996); Louis Michael Seidman, Confusion at the Border: Cruzan, “The Right to Die,” and the Public/Private Distinction, 1991 SUP. CT. REV. 47, 49-55 (“[T]he Court implied, without quite holding, that a competent person would have the constitutional right to refuse lifesaving hydration and nutrition.”). But see RONALD D. ROTUNDA & JOHN E. NOWAK, TREATISE ON CONSTITUTIONAL LAW: SUBSTANCE AND PROCEDURE 210 (4th ed. 2008) (“The Court only assumed, and did not decide, that an individual had a right to refuse life saving treatment.”). 316. See supra note 92. 317. See Miller & Meier, supra note 138, at 560 (“[T]he legitimacy of [VSED] derives from the patient’s legal and moral right to refuse medical treatment.”); Rebecca Dresser, When Patients Resist Feeding: Medical, Ethical, and Legal Considerations, 33 J. AM. GERIATRICS SOC’Y 790, 790 (1985). 318. David Margolick, Judge Says Ailing Man, 85, May Fast to Death, N.Y. TIMES, Feb. 3, 1984, at A1, available at http://www.nytimes.com/1984/02/03/nyregion/judge-says-ailing-man- 85-may-fast-to-death.html (noting that the judge also found that Mr. Henninger could be force- fed only by being physically restrained). But even if restraint were not required, it would be odd

2011] Voluntarily Stopping Eating and Drinking 409 knowingly refuse medical treatment.319 Two other New York courts similarly declined nursing home requests for authorization to prevent patients’ deaths from VSED.320 In a better known opinion, the California Supreme Court reached a comparable conclusion. Howard Andrews, an inmate, refused to eat causing weight loss and threatening his life.321 Andrews had recently been rendered a quadriplegic as the result of a fall, and was depressed about his “profoundly disabling” and “irreversible” condition.322 The prison system petitioned the court for permission to insert a feeding tube over Andrews’ objections. But since Andrews had the capacity to understand and appreciate his circumstances, the court refused to grant that permission.323 Other courts have issued similar rulings both in the prisoner “hunger strike” context324 and in the nursing home context.325 For example, Robert if healthcare providers could force feed those less able to fight back precisely because they could not fight back. The resident’s identity was disclosed in John Gallagher, Health Facilities’ Obligations when a Patient Refuses Treatment, HEALTH PROGRESS, Sept. 1984, at 40, 43. Dresser, supra note 317, at 793. The case citation has been identified as In re Plaza Health & Rehab. Ctr., N.Y. Sup. Ct. Onondaga County, Feb. 2, 1984. 319. Margolick, supra note 318, at A1. 320. A.B. v. C., 477 N.Y.S. 2d 281, 283 (Sup. Ct. 1984) (stating that though “[t]he Court is sympathetic with petitioner’s plight [quadriplegia] and would honor her request . . . to take only whatever nourishment she chooses” it could not grant the relief requested for other reasons); Cantor 2006, supra note 25, at 417 (citing In re Brooks 258 N.Y.S. 2d 621 (Sup. Ct. 1987)). 321. Thor v. Superior Court, 855 P.2d 375, 379 (Cal. 1993). 322. Id. at 384. 323. Id. at 390. 324. See, e.g., Zant v. Prevatte, 286 S.E.2d 715, 716-17 (Ga. 1982) (holding that a prisoner has the right to refuse food); State ex rel. White v. Narick, 292 S.E.2d 54, 58 (W. Va. 1982) (ruling against prisoner but indicating a hunger strike would be permitted by one ‘‘approaching certain, painful, uninvited death”); Singletary v. Costello, 665 So. 2d 1099, 1110 (Fla. Dist. Ct. App. 1996) (denying prison’s request for injunction to impose treatment on fasting prisoner even where the fast was for protest); Wisconsin Dep’t Corr. v. Lilly, No. 2007- CV-392 (Dodge Cty. Cir. Ct., Wisc. 2009) (ordering termination for force feeding). Cf. Sec’y of State for the Home Dep’t v. Robb, [1995] 1 All E.R. 677 [678] (Eng.) (holding that an adult prisoner of sound mine has the right to refuse nutrition and hydration); Regina (Wilkinson) v. Broadmoor Special Hosp. Auth., [2001] EWCA (Civ) 1545, [2002] W.L.R. 419 [447] (Eng.) (stating “the decision to impose treatment without consent upon a protesting patient is a potential invasion of his [or her] rights”); Airedale NHS Trust v. Bland, [1993] All E.R. 821 [822] (Eng.) (holding “[m]edical treatment . . . could lawfully be withheld from an insensate patient with no hope of recovery”); CORR. SERV. CAN., COMMISSIONER’S DIRECTIVE, NO. 825, HUNGER STRIKES (1995), available at http://www.csc-scc.gc.ca/text/plcy/doc/825-cd.pdf (“The Service shall not direct the force feeding of an inmate who had the capacity to understand the consequences of fasting at the time he or she made the decision to fast.”). Admittedly, courts typically do not respect prisoner refusals because of penological interests. But in almost all those cases the prisoner was not seeking a right to die but was engaged in a hunger strike as a form of protest or even attempted manipulation. See Martinez v. Turner, 977 F.2d 421, 422 (8th Cir. 1992); Garza v. Carlson, 877 F.2d 14, 17 (8th Cir. 1989); Doe v. United States, 150 F.3d 170, 172 (2d. Cir. 1998); People ex rel. Dep’t of Corr. v. Fort, 815 N.E.2d 1246, 1250–51 (Ill. App. Ct. 2004); Narick, 292 S.E.2d at 58. See also 28 C.F.R. § 549.65 (2010) (stating that if an inmate refuses medical treatment, a physician may consider forced medical treatment if the inmate’s health or life is threatened); Freeman v. Berge, 441 F.3d 543, 544 (7th Cir. 2006). For 410 Widener Law Review [Vol. 17: 363

Corbeil was left quadriplegic after an off-road vehicle accident.326 While a resident in a Canadian nursing home, Corbeil wanted to refuse medical treatment and begin a fast.327 The court ordered the facility to honor his wishes, explaining that the court can counter the will of the respondent no more than it could direct a patient to undergo chemotherapy, radiation therapy, or dialysis.328 Notably, the court described Corbeil’s assisted oral feeding as artificial feeding.329 The right to refuse medical treatment impliedly requires that the care or treatment be medical in nature. If disallowing VSED is accomplished through administering artificial nutrition and hydration, as the California prison system proposed for Howard Andrews, then the refusal more clearly concerns medical treatment. Nasogastric tubes (inserted through the nasal passageway for short-term use) and percutaneous endoscopic gastronomy (PEG) tubes (inserted directly into the stomach for long-term use) are uniformly considered medical treatment.330 But what about oral nutrition and hydration? Is that also medical treatment? Hand feeding seems to qualify. Leading medical ethicists include VSED within the category of voluntary passive euthanasia.331 After all, most of the reasons that artificial nutrition and hydration (ANH) is considered to be medical treatment apply equally to oral hydration.332 First, hand feeding is intrusive. It consists of carefully guiding food down the patient’s throat,

another example of government action regarding a prison hunger strike see Jerry Lawton, Crossbow Cannibal Wins Right to Die in Prison, DAILY STAR (Jan. 26, 2011), http://www.dailystar.co.uk/posts/view/173648 (reporting that prison officials allowed Stephen Griffiths to starve himself to death). 325. See, e.g., Austl. Cap. Territory v JT [2009] ACTCS 105 ¶¶ 4, 64 (Austl.) (ruling that providers could, as they desired, defer to patient’s fasting, if patient had been competent). 326. Manoir de la Pointe Bleue (1978) Inc. c. Corbeil, [1992] Carswell Quebec 1623 (Que. Super. Ct.) (Can.). 327. Id. at ¶ 121. 328. Id. at ¶ 94. 329. Id. at ¶ 87. 330. See MEISEL & CERMINARA, supra note 88, at 6-77 – 6-79. 331. See Byock, supra note 160, at 8; Steven H. Miles, The Terminally Ill Elderly: Dealing with the Ethics of Feeding, GERIATRICS, May 1985, at 112, 115; Schwarz, supra note 81, at 55 (“Many palliative care clinicians agree with ethicists who view stopping eating and drinking as a form of forgoing life-sustaining treatments that’s consistent with the ethical and legal consensus supporting a competent patient’s right to refuse interventions.”). Furthermore, the fact that some state statutes specifically and expressly define oral nutrition and hydration as not constituting health care implies that there is a general understanding that but for such definition, oral nutrition and hydration are considered health care. See infra notes 420-22. 332. See BERNAT, supra note 9, at 215 (“[VSED] is consistent with traditional medical, moral, and legal practices because patients have the right to refuse life-sustaining therapies, including hydration and nutrition.”); Franklin G. Miller et al., Assisted Suicide Compared with Refusal of Treatment: A Valid Distinction?, 132 ANNALS INTERNAL MED. 470, 472-73 (2000) (arguing that VSED cases “lie within the scope of the patient’s right to refuse treatment” because “food and water are standard elements of care in clinical contexts”).

2011] Voluntarily Stopping Eating and Drinking 411 which carries the risk of aspiration pneumonia.333 Second, hand feeding requires either special personnel or special training.334 It is typically ordered by physicians and administered by nurses. Even if it is administered by lay caregivers, they need special training.335 Third, hand feeding often requires special eating aids such as padded cutlery, uni-valvular straws, plate guards, and two-handled cups.336 Fourth, hand feeding often requires special nutritional formulations.337 Different diet modifications are necessary depending upon the patient’s nutritional needs and chewing and swallowing capabilities.338 In short, for the VSED-appropriate patient population who depend on manual assistance with oral feeding and drinking, VSED is the refusal of medical treatment. But logic can only take us so far. This is highly contested ground.339 While there are good reasons to characterize hand feeding as medical treatment, some have advanced reasons to characterize it otherwise. These VSED opponents make two main arguments. First, many argue that not even ANH is medical therapy.340 Therefore, any similarity between hand feeding and

333. See Shepherd 2006, supra note 26, at 335-37. 334. See 42 C.F.R. §§ 483.35(h)(1), 483.160 (2009) (requiring training for feeding assistants); 42 C.F.R. § 483.35(h)(2) (2009) (requiring R.N. or L.P.N. supervision of feeding assistants); ORAL FEEDING DIFFICULTIES, supra note 172, at 12-13, 34 (reviewing strategies to support oral feeding); Wasson et al., supra note 172, at 469 (illustrating the importance of “the level of skill of staff feeding patients”); Chia-Chi Chang & Beverly L. Roberts, Cultural Perspectives in Feeding Difficulty in Taiwanese Elderly with Dementia, 40 J. NURSING SCHOLARSHIP 235, 236 (2008). But see Erik M. Clary, On the Nature of Tube Feeding: Basic Care or Medical Treatment?, ETHICS & MED., Summer 2010, at 81, 86 (“Spoon-feeding can be administered by virtually anyone and without specialized instrumentation . . . .”). 335. See Shepherd 2006, supra note 26, at 335-37; Constance M. Dahlin & Tessa Goldsmith, Dysphagia, Xerostomia, and Hiccups, in TEXTBOOK OF PALLIATIVE NURSING 195, 202- 07 (Betty R. Ferrell & Nessa Coyle eds., 2d ed. 2006). 336. Christine Eberhardie, Assessment and Management of Eating Skills in the Older Adult, NURSING TIMES, Feb. 1, 2004, at 318, available at http://www.nursingtimes.net/nursing- practice-clinical-research/assesment-and-management-of-eating-skills-in-the-older- adult/199540.article. See 42 C.F.R. § 483.35(g) (2009) (“The facility must provide special eating equipment and utensils . . . .”); Cindy H. DePorter, Regulating Food Service in North Carolina’s Long- Term Care Facilities, 66 N.C. MED. J. 300, 302 (2005) (describing assistive devices and special eating equipment such as “plate guards” and “postural supports that help residents with positioning”); DISABLED LIVING FOUNDATION, CHOOSING EATING AND DRINKING EQUIPMENT: DLF FACTSHEET 8-15 (2005), available at http://www.dlf.org.uk/factsheets/ Choosing_eating_and_drinking_equipment_sponsored.pdf. 337. See Shepherd 2006, supra note 26, at 335-37. 338. See Dahlin & Goldsmith, supra note 335, at 206-07. 339. See, e.g., Shapiro, supra note 296, at 468 (emphasis in original) (“Feeding a person by hand (which obviously could not be done in Cruzan) is not medical care, even if administered by health care personnel when the patient can't feed herself. Thus, if a patient doesn't want to be fed, she cannot invoke the common law or the liberty interest in refusing medical treatment.”). 340. See BERNAT, supra note 9, at 179; MEISEL & CERMINARA, supra note 88, at 2-6, 6- 74; David Casarett et al., Appropriate Use of Artificial Nutrition and Hydration - Fundamental Principles and Recommendations, 353 NEW ENG. J. MED. 2607, 2608 (2005) (“Many people believe that nutrition must always be offered . . . . This view is deeply rooted in cultural and religious beliefs.”). 412 Widener Law Review [Vol. 17: 363

ANH is wholly irrelevant. Even if, as we outlined in the previous paragraph, oral hydration is not materially different from ANH, that arguably undermines, not substantiates, the justifiability of VSED. If they are analogous and ANH is not medical treatment, then neither is oral hydration. While this argument is logically valid, it is not sound. It proceeds from a false assumption: that ANH is not medical treatment. We recognize that there is an ongoing and simmering debate over the status of ANH.341 But the United States Supreme Court in Cruzan supported the idea that it was indistinguishable from other medical treatment.342 The overwhelming weight of judicial authority has similarly concluded that ANH is a form of medical treatment.343 Courts have determined that ANH constitutes medical treatment because it implicates the same concerns as other medical treatment like dialysis and mechanical ventilators, viz. bodily integrity.344 Oral nutrition and hydration is intended for the same medical objective. And it is equally invasive and intrusive. Consequently, it too must be considered medical treatment.345 The second argument that VSED opponents make against deeming manually assisted oral nutrition and hydration as medical treatment is that nutrition and hydration are basic human needs as opposed to a medical

341. See Alan Meisel, Suppose the Schindlers Had Won the Schiavo Case, 61 U. MIAMI L. REV. 733, 760 n.104 (2007) (“In many other states, bills were introduced to amend statutes to make it more difficult to terminate artificial nutrition and hydration . . . .”). 342. Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261, 288 (1990) (O’Connor, J., concurring) (“Artificial feeding cannot readily be distinguished from other forms of medical treatment.”); id. at 307 (Brennan, J., dissenting) (“No material distinction can be drawn between . . . artificial nutrition and hydration − and any other medical treatment. . . . The artificial delivery of nutrition and hydration is undoubtedly medical treatment.”). Interestingly, at oral argument, both Justices O’Connor and Scalia asked if a patient could “refuse food and water” even “if no feeding tube is required.” Oral Argument at 6:56 & 8:34, Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261 (1990) (No. 88-1503), available at http://www.oyez.org/cases/1980- 1989/1989/1989_88_1503/argument. 343. See supra notes 318-329. Prior to Cruzan, many state courts similarly acknowledged no distinction between the decision to forgo artificial hydration and nutrition and the decision to forgo other life-sustaining medical treatments. See Gray v. Romeo, 697 F. Supp. 580, 587 (D.R.I. 1988); In re Gardner, 534 A.2d 947, 954-55 (Me. 1987); In re Conroy, 486 A.2d 1209, 1235-37 (N.J. 1985); Brophy v. New England Sinai Hosp., 497 N.E.2d 626, 636-39 (Mass. 1986); In re Peter, 529 A.2d 419, 427-28 (N.J. 1987); In re Jobes, 529 A.2d 434, 444 n. 9 (N.J. 1987); In re Drabick, 245 Cal. Rptr. 840, 846 n.9 (Ct. App. 1988); McConnell v. Beverly Enterprises-Conn., 553 A.2d 596, 603 (Conn. 1989). 344. See Cruzan, 497 U.S. at 288 (O’Connor, J., concurring) (stating that “medical treatment on an unwilling competent adult . . . involves some form of restraint and intrusion . . . . Artificial feeding cannot readily be distinguished from other forms of medical treatment”). 345. Thomas I. Cochrane & Robert D. Truog, The Ethical Requirement to Provide Hydration and Nutrition, 166 ARCHIVES INTERNAL MED. 1324, 1324 (2006) (authors’ response to claims made in a letter to the editor) (“[T]he right to refuse an intervention does not depend on the ‘artificiality’ of the intervention.”) (footnote omitted); Robert D. Truog & Thomas I. Cochrane, Refusal of Hydration and Nutrition: Irrelevance of the “Artificial” vs. “Natural” Distinction, 165 ARCHIVES INTERNAL MED. 2574, 2574 (2005).

2011] Voluntarily Stopping Eating and Drinking 413 intervention.346 As such, it is argued that oral nutrition and hydration are morally necessary and cannot be refused.347 After all, many of the arguments for the justifiability of withholding and withdrawing ANH rely upon distinguishing it from oral nutrition and hydration.348 While patients can refuse medical interventions, “basic nursing care necessary to maintain hygiene, dignity, and comfort . . . should be maintained at all times.”349

346. ANNALS OF LONG TERM CARE, supra note 174 (“The choice to eat and drink . . . is not really a medical decision . . . . These activities fall into basic activities of living . . . . [S]ome decisions are so fundamental to the care provided that others should not be allowed to make them.”) (attributing to Michael D. Cantor). 347. “[T]he administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act.” Pope John Paul II, Address to the Participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas” (Mar. 20, 2004), available at http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jpii_ spe_20040320_congress-fiamc_en.html (emphasis in original). See also Alan Jotkowitz, End-of- Life Treatment Decisions: The Opportunity to Care, AM. J. BIOETHICS, Apr. 2009, at 59, 59 (stating that hand-feeding, unlike medical intervention, is a basic human need and is therefore morally necessary); Mark Siegler & Alan J. Weisbard, Against the Emerging Stream: Should Fluids and Nutritional Support Be Discontinued?, 145 ARCHIVES INTERNAL MED. 129, 130 (1985) (critiquing the acceptance of the emerging medical practice of withdrawing fluids and nutrition from dying patients); Daniel Callahan, On Feeding the Dying, HASTINGS CTR. REP., Oct. 1983, at 22, 22; Patrick G. Derr, Nutrition and Hydration as Elective Therapy: Brophy and Jobes from an Ethical and Historical Perspective, 2 ISSUES L. & MED. 25, 38 (1986) (arguing that many factors demonstrate the possibility of distinguishing the withholding of nutrition and fluids from the withholding of medical treatment). 348. Because the justification for ANH relies upon distinguishing it from oral nutrition and hydration, there is now an implication that patients do not have a right to refuse feeding by hand. Shepherd 2006, supra note 26, at 336 (citing In re Estate of Longeway, 549 N.E.2d 292, 296 (Ill. 1990)). Indeed, some statutes use terms like “[m]edically administered hydration and nutrition” to refer to nutrition and hydration through nasogastric, gastrostomy, and jejunostomy tubes or intravenously. See BERNAT, supra note 9, at 179. This implies that oral nutrition and hydration is not “[m]edically administered.” Id. at 179 (“In an awake, alert person, eating and drinking obviously cannot be construed as medical therapies . . . .”). Similarly, some courts justified treating nasogastric and PEG tubes as medical treatment by distinguishing such interventions from “typical human ways of providing nutrition and hydration.” See Barber v. Super. Ct., 195 Cal. Rptr. 484, 490 (Ct. App. 1983); see also McConnell v. Beverly Enterprises- Conn., 553 A.2d 596, 603 (Conn. 1989) (construing state statute to allow “a device such as a gastrostomy tube” but to not “under any circumstances, permit the withholding of normal nutritional aids such as a spoon or a straw”) (footnote omitted); In re Guardianship of Grant, 747 P.2d 445, 453 (Wash. 1987) (“[N]asogastric tubes and intravenous infusions are significantly different from typical human ways of providing nutrition.”); In re Conroy, 486 A.2d at 1236 (“[A]rtificial feedings such as nasogastric tubes, gastrostomies, and intravenous infusions are significantly different from bottle-feeding or spoonfeeding–they are medical procedures with inherent risks and possible side effects, instituted by skilled healthcare providers . . . .”). 349. BERNAT, supra note 9, at 177. See also Harry R. Moody, Cross-Cultural Geriatric Ethics: Negotiating Our Differences, 22 GENERATIONS 32, 37 (1998) (“Even if patients do refuse . . . there may be ways to negotiate with them and persuade them to accept more aggressive palliative care.”); In re Nadeau, 375 N.W.2d 85, 87 (Minn. Ct. App. 1985). If hand feeding is analogized to this “basic care,” then it seems it cannot be refused. See Shepherd 2006, supra note 26, at 338. But a patient can refuse these feeding methods too. Hoffmann, supra note 102, at 302. 414 Widener Law Review [Vol. 17: 363

To the extent that this argument relies on the special status of nutrition and hydration, it has been almost uniformly rejected by courts and legislatures.350 Therefore, all that can plausibly remain of this argument is that while food and water can be refused through one (more artificial or more technologically complex) means or mechanism, food and water cannot be refused when delivered through another (less technologically complex) means. But, so exposed, the argument essentially relies on the long rejected ordinary- extraordinary distinction.351 As Chief Justice Rehnquist observed: “It seems odd that your bodily integrity is violated by sticking a needle in your arm but not by sticking a spoon in your mouth.”352 The VSED opponent’s argument is more an assertion of the conclusion rather than an argument to support the conclusion.353 In sum, given numerous similarities to ANH, VSED literally is the refusal of medical treatment, or, at the very least, is sufficiently analogous to the refusal of medical treatment that it should be encompassed in that right. The Supreme Court of South Australia acknowledged that “[t]here is . . . a difference between the taking of food by natural means and the medical administration of nutrition.”354 Nonetheless, “those differences do not appear . . . to be sufficient to sustain a distinction between suicide and the exercise of the right to self-determination.”355

C. Allowing VSED Is Not Abuse and Neglect

Our arguments, based on battery and on the right to refuse treatment, both attempt to ground a legal right to VSED. But healthcare providers’ legal concerns with VSED extend beyond uncertainty over the scope of patient autonomy. Providers are also concerned that VSED is specifically prohibited

350. See supra notes 318-329. Notably, the United States Supreme Court reversed the Missouri Supreme Court on this precise point. Cf. Cruzan v. Harmon, 760 S.W.2d 408, 423-24 (Mo. 1988), with Cruzan v. Dir., Mo. Dep’t of Health, 497 U.S. 261, 279 (1990); and id. at 307 (Brennan, J., dissenting). Admittedly, some case law suggests that the provision of dietary services does not constitute the provision of “medical” services. See, e.g., Stenton Hall v. Medical Liability Loss Fund, 829 A.2d 377, 384 (Pa. Cmwlth. 2003). 351. Cf. Lynn & Childress, supra note 142, at 19 (arguing that factors such as simplicity, naturalness, invasiveness, and customariness are “not morally relevant in distinguishing” eating and drinking); MEISEL & CERMINARA, supra note 88, at 5-20 – 5-21. 352. Oral Argument at 13:39 to 13:46, Vacco v. Quill, 521 U.S. 793 (1997) (No. 95- 1858), available at http://www.oyez.org/cases/1990-1999/1996/1996_95_1858/argument. 353. See ALBERT R. JONSEN ET AL., SOURCE BOOK IN BIOETHICS 176 (1998). The artificial-natural distinction will continue to dissolve with the development and implementation of nanotechnology. See Jordan Paradise et al., The Challenge of Developing Oversight Approaches to Nanobiotechnolgy, 37 J.L. MED. & ETHICS 543, 543 (2009). 354. H Ltd v J & Anor [2010] SASC 176 ¶ 64 (Austl.). 355. Id.

2011] Voluntarily Stopping Eating and Drinking 415 because it constitutes abuse, neglect, and/or assisted suicide.356 In this section, we will demonstrate that VSED does not constitute abuse or neglect. In the next subsection, we will establish that VSED does not constitute assisted suicide. VSED can and does occur both at home and in institutions.357 Most states have statutes that protect elders and other dependent or vulnerable individuals from abuse and neglect.358 Dehydration, malnutrition, and the deprivation of essential services like food and water are key indicators of abuse and neglect.359 Unfortunately, dehydration and malnutrition are common.360 Both domestic361 and institutional362 providers are regularly charged with violations.

356. Miller & Meier, supra note 138, at 560 (“The setting, however, may influence the availability of terminal dehydration because caregivers in some nursing homes and hospitals may be reluctant to comply with a patient’s refusal of food and water.”). See Johnson, supra note 31, at 1030 (discussing risk averseness and predicting “that doctors will avoid . . . particular treatments that in fact are legitimate”); Compassion & Choices of New York, Counseling Patients, CONNECTIONS (Fall 2005), at 3, 3, available at http://www.compassionandchoicesofny.org /downloads/CAC_NY_NEWS.1105.pdf. (describing a case in which a nursing home opposed a ninety-seven-year-old woman’s plan to VSED). 357. Chabot & Goedhart, supra note 112, at 1749 (reporting use of VSED from a Dutch survey: forty-eight percent at home, forty-one percent in an institution, and thirteen percent other); CHABOT, supra note 8, at 26. 358. See, e.g., D.C. CODE § 22-934 (Supp. 2009) (prohibiting the willful failure to maintain the health of a vulnerable adult including a failure to provide adequate food); FLA. STAT. ANN. § 825.102(3)(a)(1) (West 2006) (making neglect a felony and defining neglect to include “[a] caregiver’s failure or omission to provide an elderly person or disabled adult with the care, supervision, and services necessary to maintain . . . physical and mental health, including, but not limited to, food [and] nutrition . . . .”); GA. CODE ANN. § 16-5-100(a) (2007) (stating that cruelty to a person sixty-five years or older occurs when someone willfully deprives an elder of necessary health care and sustenance). 359. See 42 C.F.R. § 483.25(i) (2009) (a facility “must ensure that a resident . . . [m]aintains acceptable parameters of nutritional status . . . [and] [r]eceives a therapeutic diet when there is a nutritional problem”). 360. Debra Shipman & Jack Hooten, Are Nursing Homes Adequately Staffed? The Silent Epidemic of Malnutrition and Dehydration in Nursing Home Residents, 33 J. GERONTOLOGICAL NURSING, July 2007, at 15. In 2000, the federal agency that administers Medicare and Medicaid distributed educational materials titled “Nutrition and Hydration Care: A Fact Pac for Nursing Home Administrators and Managers.” Press Release, Ctr. for Medicare & Medicaid Servs., HCFA Launches Nat’l Campaign to Train Nursing Home Workers to Prevent Weight Loss, Dehydration Among Residents (Sept. 18, 2000) http://cms.gov/apps/media/press/ release.asp?Counter=231&intNumPerPage=10&checkDate=&checkKey=&srchType=1&num Days=0&srchOpt=0&srchData=&keywordType=All&chkNewsType=1%2C+2%2C+3%2C+ 4%2c+5&intPage=&showAll=1&pYear=1&year=2000&desc=false&cboOrder=date. 361. Even family caretakers are charged with negligently or recklessly letting their wards starve to death. See State v. Buckley, 792 N.W.2d 518, 521 (N.D. 2010) (affirming the conviction of Stevie Buckley for starving her six-month-old baby to death); TERMAN, supra note 75, at 278-79 (discussing the cases of Kimberly Loebig and Delores Johnson, respectively); Martha Deller, Woman Sentenced to Life for Abusing Bedridden Man, STAR-TELEGRAM (Dec. 12, 2008), http://www.star-telegram.com/2008/12/12/1091130/woman-sentenced-to-life-for- abusing.html (reporting on the criminal conviction of caretaker Lowesta Halliburton); Husband Let Wife Starve to Death, BBC NEWS (Mar. 28, 2008), http://news.bbc.co.uk/2/hi/uk_news/ england/berkshire/7318610.stm (reporting on the criminal conviction of William Pottinger for the death of his mentally ill wife). 416 Widener Law Review [Vol. 17: 363

For example, in 2009, a widow was awarded $6.5 million against an Ohio nursing home that failed to provide her husband with enough water.363 Other caregivers are facing not only monetary judgments but even prison sentences for failing to provide sufficient food and nutrition to individuals they were taking care of.364 A significant body of federal and state law is specifically directed at preventing the dehydration and malnourishment of long term care residents.365 For example, Medicare and Medicaid Conditions of Participation require nutritional assessment of residents.366 They also require that the facility

362. See MEISEL & CERMINARA, supra note 88, at 6-84, 6-86; Kiran Randhawa, Nurse Who Denied Dying Patient Water is Struck Off, EVENING STANDARD (London), Sept. 17, 2010, at 34, available at http://www.thisislondon.co.uk/standard/article-23879122-nurse-who-denied- dying-patient-water-is-struck-off.do; Warren Wolfe, Stillwater Nursing Home Sued Over Man’s Death, STAR TRIB., Dec. 30, 2008, at 2B, available at http://www.startribune.com/local/east/ 36909734.html. Sometimes, the cases are hard to distinguish because the patients appear to have refused food and water. See Maria Nagle, Judge Dismisses Charges in Dehydration Death, J. COURIER (Sept. 9, 2009, 6:20 PM), http://www.myjournalcourier.com/articles/judge-23708- charges-death.html; David Ryan, Local Nursing Home Sued for Wrongful Death, NAPA VALLEY REG. (Dec. 12, 2007, 12:00 AM), http://napavalleyregister.com/news/local/article_c25d3389-400a- 57b5-a0b5-ac0825d460b9.html. 363. Nursing Home Dehydration Death Results in $6.5 Million Verdict, ABOUTLAWSUITS.COM (April 30, 2009), http://www.aboutlawsuits.com/nursing-home- dehydration-death-verdict-3737/. A $628,000 settlement was reached in a False Claims Act case alleging malnutrition and dehydration. See Press Release, Dep’t of Justice, Cathedral Rock Nursing Homes and a Nursing Home Operator Resolve Criminal and Civil Health Care Fraud Allegations Related to Failure of Care and Agree to Pay the United States Over $1.6 Million (Jan. 7, 2010), http://stlouis.fbi.gov/dojpressrel/pressrel10/sl010710b.htm. In addition, the homes had to enter into a five-year corporate integrity agreement that includes extensive quality- of-care provisions including retention of an independent monitor to assess the effectiveness of the homes’ internal quality-control systems. Id. 364. See Press Release, Office of the Albany Cnty. Dist. Att’y, Three Doctors Agree: Schizophrenia Lead to Death of Mother/Court Allows Carol Adams to Seek Treatment for Mental Illness (Sept. 22, 2008), http://www.albanycountyda.com/press_releases/ September_2008/Press%20Releases/92208_adams_plea.htm (reporting that Carol Adams pled not guilty by reason of mental disease to three felony charges for her role in the death of her mother, for whom she was caretaker); John Christoffersen, 2 Accused in Dehydration Death of Connecticut Toddler, USA TODAY (Apr. 16, 2008, 5:34 PM), http://www.usatoday.com/news/ nation/2008-04-16-1281725885_x.htm (reporting that Sharon Patterson was charged with manslaughter upon accusations that she deprived twenty-three-month-old Amari Jackson of fluid for a week as punishment for bed wetting); Lauren C. Williams, Black Diamond Man Sentenced to Prison in Mother's Death from Bedsores, SEATTLE TIMES (July 16, 2010, 10:46 PM), http://seattletimes.nwsource.com/html/localnews/2012377633_wise17m.html (reporting that Christopher Wise was sentenced to three years and three months in the death of his eighty- eight-year-old mother). 365. See James T. O’Reilly, Litigating the Nursing Home Case, 2009 A.B.A. TORT TRIAL & INS. PRAC. SEC. 130-32 (discussing federal and state standards of due care for long-term care residents, and the warning signs associated with dehydration). 366. 42 C.F.R. § 483.20(b)(1)(xi) (2009). To participate in the Medicare and Medicaid programs, nursing homes must be in compliance with the federal requirements for long term care facilities as prescribed in the United States Code of Federal Regulations. Id. § 483.5(i). The

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“provide each resident with a nourishing, palatable, well-balanced diet that meets the daily nutritional and special dietary needs of each resident.”367 State law similarly provides criminal penalties for “failing to provide . . . services necessary to preserve the health, safety, or welfare of a care-dependent person for whom he or she is responsible.”368 The frequent imposition of criminal, regulatory, and civil sanctions for dehydration sends a strong signal.369 Hearing this signal (albeit amplified and distorted), many physicians practicing in nursing homes do not discontinue ANH even when it has been validly refused because they fear legal sanctions.370 If there is legal fear here (regarding jurisprudentially better settled ANH), then certainly there is as much, or more, with VSED. This body of abuse and neglect law is totally distinguishable from VSED on the ground that it is directed at involuntary, not voluntary, dehydration and malnutrition.371 While such statutes might paradigmatically apply when providers fail to provide wanted medical care, they do not apply when the medical care provided is unwanted. In one recent case, a patient’s family sued Veterans Administration providers for failing to provide “enough nutrition to sustain his life.”372 But the federal court dismissed the claim because the

regulations are interpreted in the CTRS. FOR MEDICARE & MEDICAID, STATE OPERATIONS MANUAL: APPENDIX PP – GUIDANCE TO SURVEYORS FOR LONG TERM CARE FACILITIES, http://www.cms.gov/manuals/Downloads/som107ap_pp_guidelines_ltcf.pdf (last updated Jan. 7, 2011) [hereinafter CMS SOM]. 367. 42 C.F.R. § 483.35 (2009); see also 42 U.S.C. § 1396r(b)(4)(A)(iv) (2006); DePorter, supra note 336, at 301 (“Nursing homes are required to maintain acceptable parameters of nutrition . . . [and] provide sufficient fluid intake to assure proper hydration and health.”). 368. 18 PA. CONS. STAT. ANN. § 2713(a)(1) (West 2000). 369. See, e.g., Windsor House, Docket No. C-99-227 (Dep’t of Health & Human Servs., Departmental Appeals Board May 12, 2003) (final admin. review) (imposing civil sanctions of $5000 per day for each day the threat to resident’s health and safety existed due to a nursing home’s nutrition-related deficiencies). 370. See MEISEL & CERMINARA, supra note 88, at 6-83 – 6-84, 6-86; Alan Meisel, Barriers to Forgoing Nutrition and Hydration in Nursing Homes, 21 AM. J.L. & MED. 335, 342, 342 n.36 (1995) [hereinafter Meisel 1995]. Nursing homes are similarly reluctant to allow their residents to VSED. See, e.g., Olivier Uyttebrouck, Couple Transported Out of Facility After Refusing Food, ALBUQUERQUE J. (Jan. 8, 2011), http://www.abqjournal.com/news/metro/08232859metro01- 08-11.htm (reporting on the eviction of Armond and Dorothy Rudoph from their assisted living facility); Telephone Interview with Judith Schwarz, Regional Clinical Coordinator, Compassion & Choices (Dec. 3, 2010). 371. H Ltd v J & Anor [2010] SASC 176 ¶ 73 (Austl.) (“[T]he failure to provide sustenance will constitute an offence . . . only where there is a duty to provide it . . . . [If the patient refused, the provider] would have a lawful excuse not to provide her with sustenance.”). See also id. ¶ 74 (When the patient refuses, “the effect will usually be to negate the duty and absolve the person who would otherwise owe the duty from any obligation.”); id. ¶ 86 (A “provider does not have a responsibility to provide nutrition or hydration where a resident voluntarily and rationally directs the provider not to provide those services.”). 372. Butler v. United States, No. 4:07CV00519 JMM, 2009 WL 1607912, at * 3 (E.D. Ark. June 9, 2009). 418 Widener Law Review [Vol. 17: 363 patient “clearly stated . . . that he did not want life-sustaining measures, which included a feeding tube.”373 The Medicare and Medicaid Conditions of Participation clearly provide that residents have “the right to refuse treatment.”374 State law also provides that following a patient’s or resident’s instructions cannot constitute abuse or neglect.375 While federal and state laws are aimed at protecting vulnerable individuals, these same laws place an even higher priority on honoring patient autonomy.376 The regulations were never meant to override the right to refuse.377 In short, while failing to provide adequate nutrition and hydration can constitute abuse and neglect, it constitutes neither when the patient specifically consented.378 Indeed, providing nutrition and hydration over a patient’s objections could constitute abuse.379

373. Id. See also Nagle, supra note 362 (dismissing felony neglect charges where resident refused to eat or drink). 374. 42 C.F.R. § 483.10(b)(4) (2009); Medicare and Medicaid: Requirements for Long Term Care Facilities, 54 Fed. Reg. 5316, 5321 (Feb. 2, 1989) (to be codified at 42 C.F.R. §§ 405, 442, 447, 483, 488, 489, 498) (“When invasive procedures are necessary to accomplish this end [adequate liquids] . . . residents or their representatives may refuse just as they may refuse any other medical treatment.”); CMS SOM, supra note 366, at § 483.20(k)(3)(ii); DePorter, supra note 336, at 301 (“Regardless of the resident’s condition, all residents have the right to refuse food . . . . If a resident decides to refuse liquids, he/she has the right to do so. . . . The resident’s wishes should be honored.”). 375. See 18 PA. CONS. STAT. ANN. § 2713(e) (West 2000).

A caretaker or any other individual or facility may offer an affirmative defense to charges . . . if the caretaker, individual or facility can demonstrate . . . that the alleged violations result directly from . . . the caretaker's, individual's or facility's lawful compliance with a care-dependent person’s written, signed and witnessed instructions. . . .

Id.; ARIZ. REV. STAT. ANN. § 13-3623(E)(1) (2001) (stating that child or adult abuse does not apply to “[a] health care provider . . . who permits a patient to die . . . by not providing health care if that patient refuses.”); Meisel 1995, supra note 370, 351, 351 n.100. 376. See 42 C.F.R. § 488.100 (2009) (containing detailed forms that health care providers must complete in order to comply with regulations); id. § 483.10(b)(4) (2009) (stating that a resident has a “right to refuse treatment”). 377. Medicare and Medicaid: Requirements for Long Term Care Facilities, 54 Fed. Reg. at 5321; MEISEL & CERMINARA, supra note 88, at 6-85. 378. The line between respecting the patient’s wishes and overriding the patient’s wishes may be a fine one. Indeed, as is well documented in the context of pain medication, providers face legal risk at both ends: both for giving too much and for giving too little. See Hoffmann, supra note 102, at 289. Providers cannot force the patient to drink against his or her will. They also must ensure voluntariness and encourage the patient to drink. This gets awfully close to placing providers in a catch-22. They could be sanctioned for involuntary dehydration and “‘[t]hey could also be cited for forcing her to drink against her will, but they at least have to encourage her to drink, they can’t just leave her alone and expect her to pick up the glass and drink.’” Ryan, supra note 362 (quoting Elizabeth Mautner, Napa County Long-Term Care Ombudsman). See also Kiran Chug et al., Margaret Page Dies in Rest Home After 16 Days, STUFF.CO.NZ (March 31, 2010, 5:00 AM), http://www.stuff.co.nz/national/%20health/ 3531192/Margaret-Page-dies-in-rest-home-after-16-days (nursing home staff offered food and

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D. Allowing VSED Is Not Assisted Suicide

As discussed above, assisted suicide is illegal in almost all United States jurisdictions.380 Some argue that “[t]he common elements between facilitation of VSED and assisted suicide make the legal status of VSED somewhat uncertain.”381 Jansen, for example, argues that the deliberate cessation of food and drink is assisted suicide when the individual does not have an irreversible lethal illness.382 Indeed, in In re Caulk, inmate Joel Caulk tried to starve himself to death.383 Caulk was a “healthy male inmate . . . not suffering from any terminal or life-threatening disease.”384 Consequently, the Supreme Court of New Hampshire distinguished VSED from a paradigm situation involving refusal of life-sustaining medical treatment.385 Caulk himself, the court noted,

water to Margaret Page “whenever they went into her room”); Newton, supra note 150. A nursing home CEO reported

the home had done everything in its power to convince Mrs [sic] Page to eat. But it was legally restricted by her right to choose to die. “We’ve made sure that we've continued to offer [food] and even now we ask if it's still something she wants to do. We've done everything we can.”

Id. at A1 (quoting Ralph La Salle, St. John Chief Executive); Cf. 42 C.F.R. § 483.35(d)(4) (2009) (requiring only that a substitute be “offered” to a resident who refuses food served); ORAL FEEDING DIFFICULTIES, supra note 172, at 44 (requiring that basic care is mandatory only “in the absence of explicit refusal by the patient” and that providers need only make an “offer of oral nutrition and hydration”). 379. See In re Axelrod, 560 N.Y.S.2d 573, 573 (App. Div. 1990) (affirming a commissioner’s determination that a medical employee was guilty of patient abuse where “after the patient refused to take her medication, [employee] held the patient’s chin and poured the medication down her throat”). A growing number of cases have allowed recovery of damages where providers performed unwanted breathing assistance. See, e.g., Scheible v. Joseph L. Morse Geriatric Ctr., 988 So. 2d 1130, 1131-32 (Fla. Dist. Ct. App. 2008); Cardoza v. USC Univ. Hosp., No. B195092, 2008 WL 3413312, at *1-2 (Cal. Ct. App. Aug. 13, 2008) (remanding and allowing plaintiff to pursue claim). 380. See supra Part II.B.4. 381. Cantor 2006, supra note 25, at 416; see CHABOT, supra note 8, at 14 (stating that some doctors associate the deliberate cessation of nutrition as suicide); see also Cantor & Thomas, supra note 27, at 97; Bouvia v. Sup. Ct., 225 Cal. Rptr. 297, 307 (Ct. App. 1986) (Compton, J., concurring) (noting that providers were well motivated by a concern that allowing their patient to starve to death could constitute assisted suicide). In 2006, human rights activist Nikhil Soni filed a Public Interest Litigation with the High Court of the Indian state of Rajasthan, claiming that VSED (in its ritual form Santhara) is illegal suicide and those who facilitate it are assisting a suicide. See Braun, supra note 178, at 913-14, 919; Randeep Ramesh, Cancer Victim Revered for Fasting to Death, GUARDIAN (Sept. 29, 2006), http://www.guardian.co.uk/world/2006/sep/29/india.religion. 382. Jansen, supra note 168, at 62-64. 383. In re Caulk, 480 A.2d 93, 94-95 (N.H. 1984). 384. Id. at 96. 385. Other courts similarly permitted intervention with prisoner refusals where the prisoner did not have a life threatening condition. See supra note 324; Comm’r of Corr. v. Myers, 399 N.E.2d 452, 456 (Mass. 1979). 420 Widener Law Review [Vol. 17: 363

“has set the death-producing agent in motion with the specific intent of causing his own death.”386 But there are four important distinctions between VSED and PAS. Individually and cumulatively, these distinctions overwhelmingly establish that VSED is not suicide. Therefore, assisting VSED cannot be assisted suicide. First, as we argued above, hand feeding is a form of medical treatment.387 As such, its refusal is specifically and expressly defined, usually statutorily, as not constituting suicide.388 Moreover, equating the removal of ANH with suicide has been rejected.389 Given the similarity of hand feeding and ANH, the equation of VSED with suicide should similarly be rejected. Second, VSED does not constitute “suicide” as that term is used in prohibitions of assisted suicide. Self starvation is not suicide, so failing to prevent it is not assisted suicide.390 Assisted suicide prohibitions are targeted at active interventions such as the introduction of a lethal agent. VSED, in contrast, entails a passive refusal. The patient’s natural state is to dehydrate unless fluids are affirmatively introduced.391 VSED does not entail the acceleration of this process, but rather the mere absence of action to slow or stop it.392

386. Caulk, 480 A.2d at 97. 387. See supra Part IV.B. 388. See ALASKA STAT. § 13.52.120(b) (2008); CAL. PROB. CODE § 4656 (West 2009); D.C. CODE § 7-628(a) (2001); GA. CODE ANN. § 31-32-11(a) (2009); 755 ILL. COMP. STAT. 45/4- 8 (2007); KAN. STAT. ANN. § 65-28,108(a) (2002); MONT. CODE ANN. § 50-9-205 (2007); NEB. REV. STAT. § 20-412(1) (2008); NEV. REV. STAT. § 449.650(1) (2007); OHIO REV. CODE ANN. § 2133.12(A) (LexisNexis 2007); OKLA STAT. tit. 63, § 3101.12(A) (2004); R.I. GEN. LAWS § 23- 4.10-9(a) (2008); TENN. CODE ANN. § 68-11-1814(b) (2006); H Ltd v J & Anor [2010] SASC 176 ¶ 59 (Austl.) (“[A] competent adult is not under a duty to take life sustaining medication and . . . a refusal to do so is therefore not suicide. Once that proposition is accepted it is difficult to maintain the proposition that self starvation is suicide as a matter of logic . . . .”) (footnote omitted). But see ALA. CODE § 22-8A-9(a), (b) (LexisNexis 2006) (specifically providing that withholding or withdrawing “artificially provided nutrition and hydration” shall not “constitute a suicide and shall not constitute assisting suicide;” thereby implying that non-artificially provided nutrition and hydration is not included within the exception). 389. Meisel 1995, supra note 370, at 337-38, 337-38 nn. 17-19, 354 n.112. 390. H Ltd v J & Anor [2010] SASC 176 ¶ 67 (Austl.). 391. See supra Part III.C. 392. One might argue in response that the argument for permitting a healthcare provider to deprive a patient of water would also permit a provider to deprive the patient of air. After all, oxygen deprivation through a face mask or hood and helium is a mechanism used by assisted suicide organizations as an alternative to sodium pentobarbital. NITSCHKE & STEWART, supra note 131, at 42-49 (describing detailed information on the exit bag as a means of achieving hypoxic death); id. at 73-87 (detailing the use of carbon monoxide as a means of euthanasia); DEREK HUMPHRY, FINAL EXIT: THE PRACTICALITIES OF SELF-DELIVERANCE AND ASSISTED SUICIDE FOR THE DYING 123-28 (3d ed. 2002); Russel D. Ogden et al., Assisted Suicide by Oxygen Deprivation With Helium at a Swiss Right-to-Die Organisation, 36 J. MED. ETHICS 174, 174 (2010); Helium in an ‘Exit Bag’ New Choice for Suicide, VANCOUVER SUN (Dec. 8, 2007), http://www.canada.com/vancouversun/news/story.html?id=ce4139ae-d635-4030-ac92- a7b7d6fab09d. But this is not a passive failure to provide oxygen such as through a mechanical

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Admittedly, the active-passive distinction has been widely attacked.393 But the distinction has been endorsed by the United States Supreme Court.394 And it was endorsed by the Supreme Court specifically because it has been consistently accepted by courts and legislatures across the United States. The act-omission distinction is, as the Court explained, deeply embedded in “our Nation’s history, legal traditions, and practices.”395 Third, the distinction between VSED and assisted suicide comports with the legal principle of intent. A healthcare provider who honors a patient’s request for VSED “intends, or may so intend, only to respect his patient’s wishes.”396 In the ordinary case of murder by positive act of commission, the consent of the victim is no defense. But where the charge is one of murder by omission to do an act, and the act omitted could only be done with the consent of the patient, refusal by the patient of consent to the doing of such act does, indirectly, provide a defense to the charge of murder. The doctor cannot owe to the patient any duty to maintain his life where that life can only be sustained by intrusive medical care to which the patient will not consent.397 While the physician need not honor a request for affirmative assistance (“making [the] patient die”), the physician must honor the patient’s refusal (“letting [the] patient die”).398 Unlike a request for PAS, a request for VSED is grounded “on well-established traditional rights to bodily integrity and freedom from unwanted touching.”399 Fourth, the distinction between VSED and assisted suicide comports with the legal principle of causation. When “a patient ingests lethal medication prescribed by a physician, he is killed by that medication.”400 But, according to the way in which the refusal of ANH has been traditionally explained, when a patient refuses nutrition and hydration, “he dies from an underlying fatal disease or pathology.”401 The lives of those patients with a terminal or irreversible illness are obviously already endangered.402 But VSED causation works the same way for other patients too. The typical person loses 2.5 liters of water each day: ventilator. Instead, this is affirmatively impeding the individual’s ability to breathe air in the room. Suffocation, by the introduction of helium or carbon monoxide, is an act not an omission. 393. See Quill v. Vacco, 80 F.3d 716, 729 (2d Cir. 1996), rev’d, 512 U.S. 793 (1997); Brief for Ronald Dworkin et al. as Amici Curiae Supporting Respondents, Washington v. Glucksberg, 521 U.S. 702 (1997) (No. 96-110), 1996 WL 708956, at *10-11. 394. Vacco v. Quill, 521 U.S. 793, 807 (1997) (finding rational the distinction between assisted suicide and refusing medical treatment); Washington v. Glucksberg, 521 U.S. 702, 725- 26 (1997) (distinguishing the “right to refuse” from the “right to assistance”). Cf. MEISEL & CERMINARA, supra note 88, at 12-29 – 12-30; Cantor & Thomas, supra note 27, at 104-05. 395. Glucksberg, 521 U.S. at 710. 396. See Vacco, 521 U.S. at 801. 397. Airedale NHS Trust v. Bland [1993] All E.R. 821, at 882 (Eng.). 398. Vacco, 521 U.S. at 807. 399. Id. 400. Id. at 801. 401. Id. 402. See Rebecca Dresser, Suicide Attempts and Treatment Refusals, HASTINGS CTR. REP., May-June 2010, at 10, 10-11. 422 Widener Law Review [Vol. 17: 363 through the kidneys as urine, through the skin as sweat, and through the lungs as water vapor.403 This is a natural and automatic process that will, as described above,404 eventually lead to the person’s death. VSED does not cause this process; it is simply the omission of action to reverse it.405 Moreover, the intent and consequence of the provider’s actions are to provide comfort and reduce suffering. Death is an incidental byproduct, a double effect.

V. VSED IS OFTEN AN OPTION EVEN FOR INDIVIDUALS WITHOUT CAPACITY

Many proponents of VSED believe that it is an option only “when the patient retains mental capacity.”406 Indeed, this limitation was recently recounted in a New York Times online feature:

I have always assumed that what my mother chose to do herself, I could have insisted upon for her, as her health care proxy. In other words, if she were no

403. See INDU KHURANA, TEXTBOOK OF MEDICAL PHYSIOLOGY 545 (2006) (indicating that the human body has an average intake and outtake of 2500 milliliters/day). 404. See supra Part III.C. 405. See Compassion in Dying v. Washington, 49 F.3d 586, 594 (9th Cir. 1995), rev’d 521 U.S. 702 (1997):

Protected by the law of torts, you can have or reject such medical treatment as you see fit. . . . [But tort law has] never recognized a right to let others . . . kill you . . . . [Y]ou ask for more than being let alone . . . . The difference is not of degree but of kind. You no longer seek the ending of unwanted medical attention. You seek the right to have a second person collaborate in your death.

Id.; People v. Kevorkian, 527 N.W.2d 714, 728 (Mich. 1994).

[W]hereas suicide involves an affirmative act to end a life, the refusal or cessation of life- sustaining medical treatment simply permits life to run its course, unencumbered by contrived intervention. Put another way, suicide frustrates the natural course by introducing an outside agent to accelerate death, whereas the refusal or withdrawal of life-sustaining medical treatment allows nature to proceed, i.e., death occurs because of the underlying condition.

Id. (footnote omitted); But cf. Neil M. Gorsuch, The Right to Assisted Suicide and Euthanasia, 23 HARV. J.L. & PUB. POL'Y 599, 645 (2000) (using this as an example of how the “act-omission distinction is . . . subject to manipulation”). Admittedly, it seems like a stretch to characterize the body’s ever present need for fluid replenishment as an underlying pathology that cases death. But it is literally true. Moreover, we aim to show that this is consistent with the causation analysis applied to ANH. To the extent the argument is intuitively unappealing, that is due to the already-distorted, though accepted, logic in ANH analysis. 406. Quill, supra note 25, at 19; see also Cochrane, supra note 282, at 50 (“A right to refuse [oral nutrition and hydration] on behalf of a decisionally incapable patient is not widely recognized at the present time . . . .”). Certainly, this may be hard to establish on a best interests standard. ANNALS OF LONG TERM CARE, supra note 174.

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longer “decisionally capable,” though not on the brink of death, I could have told the staff to stop spooning food into her mouth or bringing the straw to her lips, and they would have listened to me as her surrogate. . . . [T]his isn’t so.407

The author concluded: VSED “should be considered a viable option only for cognitively intact men and women.”408 But this conclusion is too sweeping. Incapacitated patients generally have the same right to refuse as patients with capacity.409 Therefore, if a patient can contemporaneously engage in VSED, then a patient should be able to request it in advance.410 We recognize that this position deserves more argumentation and attention. But while we do not provide that analysis here, we do briefly describe several key substantive and procedural limitations on advance VSED.

A. General Rule for Substitute Decision Making

As we discussed above, patients have an almost unlimited right to refuse treatment. Yet those conditions under which many patients would want to refuse treatment (such as a vegetative state or severe dementia) do not permit patients to make a voluntary contemporaneous decision.411 Many patients at the end of life lack the capacity to make their own healthcare decisions. Fortunately, because of the value placed on autonomy and self- determination, mechanisms have been devised through which an individual’s autonomy is protected and promoted.412 Courts and legislatures have recognized the patient’s right to refuse through prior instructions or through a substitute decision maker. While they still retain capacity, patients can determine the circumstances under which VSED should (later) be implemented.413 These wishes could be accomplished through the

407. Jane Gross, What an End-of-Life Adviser Could Have Told Me, N.Y. TIMES, THE NEW OLD AGE (Dec. 15, 2008, 10:30 AM), http://newoldage.blogs.nytimes.com/ 2008/12/15/what-an-end-of-life-advisor-could-have-told-me/. Gross does note that “[o]ther end-of-life experts are less certain but know of no test cases.” Id. 408. Id. 409. See MEISEL & CERMINARA, supra note 88, at 2-5, 2-17; Cochrane, supra note 282, at 51 (“[I]ncapacitated patients retain all of their prior rights . . . .”). There are complicated philosophical and metaphysical issues with advance VSED, especially for dementia patients. See Osamu Muramoto, Socially and Temporally Extended End-of-Life Decision-Making Process for Dementia Patients, J. MED. ETHICS (forthcoming 2011); Stephen R. Latham, Living Wills and Alzheimer’s Disease, 23 QUINNIPIAC PROB. L.J. 425, 429-31 (2010). 410. See Shepherd 2006, supra note 26, at 338. 411. See Norman L. Cantor, The Straight Route to Withholding Hand-Feeding and Hydration, AM. J. BIOETHICS, Apr. 2009, at 57, 58. 412. See Pope 2010, supra note 90, at 189, 205. 413. One very interesting mechanism for doing this was thought up by Dr. Stanley Terman. Dr. Terman came up with a system of cards that would help a person determine whether or not life would be worth living in the presence or absence of a certain event. For example, a card might say “I can no longer bathe myself,” or “I can no longer recognize my children.” See Stanley A. Terman, My Way Cards, CARING ADVOCATES, http://caringadvocates.org/MyWayCards/ (last visited February 2, 2011). The person, before becoming incapacitated, would categorize the cards in two piles. One pile would be of cards 424 Widener Law Review [Vol. 17: 363 appointment of an effective surrogate decision maker.414 Or it might be done through written instructions in an advance directive. For example, one such advance directive provides:

If I ever suffer irreversible central nervous system damage to the point that I do not recognize my family, I believe that it would be best for me to die. . . . [D]o not place food or water in my mouth. Instead, place it on my bed table. If I feed myself, I live another day; if I do not, I will die and that is fine.415

B. Substantive and Procedural Limitations

While patients can generally exercise prospective autonomy to the same extent to which they can exercise contemporaneous autonomy, the law imposes some limitations on the exercise of prospective autonomy. With respect to VSED, there are two substantive and two procedural limitations.416 The first substantive limitation on refusing treatment on behalf of incapacitated patients is that advance directive statutes often require the satisfaction of certain medical prerequisites, such as a diagnosis of terminal condition or permanent unconsciousness.417 Patients who would not want to live with severe dementia may not be able to choose VSED for their later demented selves, because those selves may not be terminally ill. The second substantive limitation is that many states have special limitations on consent by substitute decision makers to forgo artificial nutrition and hydration.418 These range from an absolute bar to required which contain an averment that the person considers essential to continue life. For example, if the card says “I can no longer recognize my children,” and the person believes that the failure to recognize her own children would be a circumstance under which she would no longer want to live, she would place that card in the first pile. The other pile would consist of cards which contain tasks or functions, the loss of which would not make the person want to die. This process assists people in setting up concrete circumstances under which they would not want to live. Once those circumstances are determined, they can be memorialized in an advance directive. This can occur along with instructions to discontinue treatment if, say, three of the conditions are met, or one, or all. This gives the person autonomy in the decision making process even though a surrogate might be charged with making the contemporaneous decision. 414. McNeil, supra note 262 (“[D]octors sometimes do surreptitiously agree to requests by family members for death by dehydration . . . .”). 415. William A. Hensel, My Living Will, 275 JAMA 588, 588 (1996). 416. Even in these states, it is unclear that the statutes are an insuperable obstacle. See, e.g., In re Guardianship of Browning, 568 So. 2d 4, 9, 12 (Fla. 1990) (holding that while there was no statutory right to remove feeding tube, there was a constitutional right); Meisel 1995, supra note 370, at 356, 356 nn.126-28 (stating that restrictions “can probably be circumvented”). Still, perhaps it is the practical considerations such as medical provider fear and legal uncertainty, as discussed above, that are the true obstacles. 417. Sabatino, supra note 30, at 221; Pope, supra note 30. 418. When Terri Schiavo’s surrogate authorized the withdrawal of CANH, protestors charged that she was being “starved” to death. Shepherd 2006, supra note 26, at 326-27. Many states introduced bills similar to Florida’s “Starvation and Dehydration of Persons with Disabilities Prevention Act”. Id. at 327-28.

2011] Voluntarily Stopping Eating and Drinking 425 diagnostic preconditions.419 Although some states, like California,420 have broadly defined the right to refuse to include any care, other states have narrowly defined the right of surrogates to refuse life-sustaining treatment as applying only to artificial or mechanical interventions. Statutes in these states specifically prohibit the forgoing of “normal feeding procedures” through an advance directive or surrogate decision maker.421 For example, New Hampshire law provides that “[u]nder no conditions will your health care agent be able to direct the withholding of food and drink that you are able to eat and drink normally.”422 Missouri law similarly provides that “no attorney in fact may, with the intent of causing the death of the patient, authorize the withdrawal of nutrition or hydration which the patient may ingest through natural means.”423 In addition to these two substantive limitations, there are also two procedural limitations. First, there is a good deal of skepticism about the accuracy of substitute decision makers.424 Consequently, surrogate decision makers requesting the cessation of nutrition and hydration must meet substantially higher evidentiary hurdles.425

419. Sabatino, supra note 30, at 221. 420. CAL. PROB. CODE § 4615 (West 2009) (defining ‘”Health care” as “any care, treatment, service, or procedure to maintain, diagnose, or otherwise affect a patient’s physical or mental condition.”). 421. See, e.g., WIS. STAT. ANN. § 155.20(4) (West 2010) (“A health care agent may not consent to the withholding or withdrawal of orally ingested nutrition or hydration unless . . . medically contraindicated.”); MEISEL & CERMINARA, supra note 88, at 7-97. But see MD. CODE ANN., HEALTH-GEN. § 5-611(d) (LexisNexis 2009) (requiring a healthcare provider to make only “reasonable efforts to provide an individual with food and water by mouth”). 422. N.H. REV. STAT. ANN. § 137-J:19 (2005) (emphasis added). New Hampshire also defines both “life-sustaining treatment” and “medically administered nutrition and hydration” as specifically not including “natural ingestion of food or fluids by eating and drinking.” Id. § 137- J:2(XIII) & (XV). Oregon defines “health care” as including only “artificially administered nutrition and hydration,” which is itself defined as not including “the provision of nutrition and hydration by cup, hand, bottle, drinking straw or eating utensil.” OR. REV. STAT. § 127.505(4) & (7) (2007) (emphasis added). Nebraska similarly defines “[h]ealth care decision” and “[l]ife- sustaining procedure” as not including “the usual and typical provision of nutrition and hydration.” NEB. REV. STAT. § 30-3402(5) & (8) (2001). In turn, “usual and typical provision of nutrition and hydration” is defined as “delivery of food and fluids orally, including by cup, eating utensil, bottle, or drinking straw.” Id. § 30-3402(14). Cf. MASS. GEN. LAWS ANN. ch. 201D, § 13 (West 2004) (“Nothing in this chapter shall preclude . . . non-artificial oral feeding . . . .”). The British medical licensing board issued guidance warning that “an advance refusal of food and drink has no force.” GEN. MED. COUNCIL, supra note 166, at 52 n.31. 423. MO. REV. STAT. § 404.820(2) (2001) (emphasis added). In 2010, Missouri legislators introduced a bill that would prohibit even the withdrawal of artificial nutrition and hydration for sixty days during which providers must engage in “rehabilitative efforts regarding the patient’s swallowing reflexes” and during which “oral feeding is offered to the patient at least three times per day.” H.B. 1235, 95th Gen. Assemb., Reg. Sess. (Mo. 2010). See also H.B. 1178, Gen. Assemb., 2009-2010 Reg. Sess (Ga. 2010) (stating that a physician “[u]nder no circumstances shall . . . deprive a person receiving health care of nourishment or hydration unless . . . [it] is necessary as part of such person’s medical treatment”). 424. See Pope 2010, supra note 90, at 215-17. 425. In the wake of the Terri Schiavo case, many state legislatures introduced bills with titles such as the “Starvation and Dehydration of Persons with Disabilities Prevention 426 Widener Law Review [Vol. 17: 363

The second procedural hurdle concerns the concept of revocation. Advance directives and surrogate appointments can be revoked by the patient. Revocation is typically straightforward when dealing with a patient with capacity. But what exactly constitutes revocation from an incapacitated patient?426 A severely demented patient might appear to request or desire food and water. Does a gesture such as pointing to one’s mouth constitute a revocation of the patient’s earlier (capacitated) instruction to not assist feeding under those circumstances?427

VI. CONCLUSION

Healthcare providers’ concerns regarding the legality of VSED are misplaced. Providers not only may but also should honor appropriate patient requests for VSED. Furthermore, providers should educate patients that VSED is an available treatment alternative. Informed consent requires more than just acceding to a decision to refuse treatment. It also requires making patients aware of their end-of-life options in the first place.428 “Physicians should educate their patients…that [VSED] is an acceptable alternative...... ”429

Act.” See, e.g., Assemb. B. 2173, 213th Leg., Reg. Sess. (N.J. 2008). But see Consent to Medical Treatment and Palliative Care (Voluntary Euthanasia) Amendment Bill 2008 (Austl.) (bill introduced “to allow certain adult persons . . . who are in the terminal phase of a terminal illness . . . to end their suffering by means of voluntary euthanasia . . . .”) 426. See H Ltd v J & Anor [2010] SASC 176 ¶ 91 (Austl.) (“If the direction is withdrawn or revoked . . . the duties will again be enlivened. . . . [T]he absolution of [the provider] from its responsibilities depends on it continuing to believe on reasonable grounds that the direction has not been withdrawn or revoked.”). 427. See generally VT. STAT. ANN. tit. 18, § 9707(h) (West 2010) (”An advance directive . . . may contain a provision permitting the agent, in the event that the principal lacks capacity, to authorize or withhold health care over the principal’s objection.”); H.B. 2396, 2009 Gen. Assemb., Reg. Sess. (Va. 2009), enacted as 2009 Va. Acts Ch. 211 & 268 (codified at VA. CODE ANN. §§ 54.1-2982 to 54.1-2992 (2009) (authorizing an individual to make certain choices, though not regarding life-sustaining treatment, in an advance directive that are binding even if the individual later objects to those choices when lacking capacity; allowing a patient’s agent or other decision maker to make treatment decisions, even when the incapacitated patient protests). 428. Assemb. B. 2747, 2007-2008 Leg., Reg. Sess. (Cal. 2008), codified at CAL. HEALTH & SAFETY CODE § 442.5 (West 2010); H.B. 435, 2009-2010 Leg., 70th Sess. (Vt. 2009) (Patients’ Bill of Rights for Palliative Care and Pain Management), enacted as 2009 Vt. Acts & Resolves 159 (codified at VT. STAT. ANN. tit. 18 § 1871 (2009)); S.B. 4498, 2009-2010 Leg., Reg. Sess (N.Y. 2009) (codified at N.Y. PUB. HEALTH LAW § 2997-c (McKinney 2007); S.B. 1311, 49th Leg., Reg. Sess. (Ariz. 2009). VSED is not specifically mentioned in these bills and statutes, but the relevant regulators could and should construe VSED to be encompassed within the duty imposed. A recently-filed lawsuit seeks damages from providers for failing to inform about PSU in accordance with the doctrine of informed consent and the California Right to Know End-of-Life Options Act. Complaint at 4, 8, Hargett v. Vitas Healthcare Corp., No. RG10547255 (Cal. Super. Ct. Nov.18, 2010). 429. BERNAT, supra note 9, at 216; Byock, supra note 160, at 12 (“[T]he patient remains entitled to accurate medical information about the options available to them.”); Bernard

2011] Voluntarily Stopping Eating and Drinking 427

The situation is less clear when the VSED request is made by a surrogate instead of by the patient herself. But in many jurisdictions such a decision has the same status. Cantor and Thomas may be correct in predicting that judicial intervention in VSED cases is unlikely. Judges would likely find it “demeaning and inhumane” to order restraints and feeding for a patient “enmeshed in an inexorable dying process.”430 But this prediction, even if accurate, has been, and remains, insufficient to assuage provider concerns. Many providers are reluctant to tell patients that VSED is an option.431 And many providers remain reluctant to honor requests for VSED. Education regarding legal rights, responsibilities, and risks may be insufficient.432 Consequently, it may be necessary both to mandate disclosure of VSED as an option and to clarify safe harbor protection for supervising and supporting it.

Gert et al., Physician Involvement in Voluntary Stopping of Eating and Drinking, 137 ANNALS INTERNAL MED. 1010, 1011 (2002) (Letter to the Editor) (“Physicians may refer patients to another physician . . . but they should not impose their own . . . moral views on patients by refusing to inform them of their legally sanctioned options.”); Quill et al., Last-Resort Options, supra note 40, at 422 (“[P]atients and their families deserve to know the full range of palliative options available to them.”); Quill et al., Palliative Options, supra note 39, at 60 (arguing that physicians should “discuss all available alternatives”); Schwarz 2007, supra note 40, at 1296 (“VSED information ought to be provided when provision of comprehensive palliative care is unable to relieve suffering that the terminally ill patient finds intolerable, and other palliative options . . . are . . . inappropriate . . . [or] unacceptable to the patient.”). It is not clear exactly at what point in the patient’s illness this would be most appropriate. Kevin B. O’Reilly, California Bill Would Mandate Discussions of End-of-Life Options, AM. MED. NEWS (July 14, 2008), http://www.ama- assn.org/amednews/2008/07/14/prsc0714.htm (discussing California proposal requiring doctors to inform patients with a life expectancy of one year or less about their end-of-life options). 430. Cantor & Thomas, supra note 27, at 101-02. 431. CHABOT, supra note 8, at 28. 432. See Johnson, supra note 31, at 1009-15 (examining how education may be insufficient to decrease physicians’ fears of the law regarding certain treatments).