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.