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- 3 - ) in - 4, 5 www. ajnonline.com National Cen is the clinical ), a not-for-profit organization ), a not-for-profit Judith (Judy) Schwarz, PhD, RN, PhD, Judith (Judy) Schwarz, Ethicists are very interested in language and theEthicists are very interested in language partici were privileged to have four panelists We director of End of Life Choices New York ( director of End of Life Choices New York endoflifechoicesny.org and support to that provides information, advocacy, incurably and terminally ill patients and their fami lies who seek control of the circumstances and tim ing of death. She is a nationally recognized expert on the end-of-life option of voluntary stopping eating and drinking (VSED) as a means for suffering pa tients with decisional capacity to hasten death. accordingwith Dignity ­ to the Death 25 states are currently debating related legisla ter, tion, making this an issue of national significance. an issue.way language frames, shapes, and influences to hastenEarlier discussions on providing assistance anddeath focused on the terms “assisted suicide” sees this“physician-assisted suicide,” and one still practice.language, usually in articles opposing the haveCanada has used the term MAID; most states or empha used the expression “death with dignity” sized patient choice and control at the end of life (see A Legislative Perspective: Senator Claire Ayer their enabling legislation. The latter terms are gener ally seen in articles favoring the practice. So words here in the panelists’ remarks. as can be seen matter, pate in this dialogue, each with a unique perspective on the issue: - - - - - Also 1 In addition, 2 his policy dialogue took place at the annual con ference of the American

intense activity at the state

manities annual meeting on October 9, 2016, “This is an issue of the heart, the mind, and the social fabric.” called “death with dignity,” “physician-assisted dying,” and “medical aid in dying” (MAID), AID is the focus of level. At the time this panel T Academy of Nursing in 2016 role in to explore the nurse’s assisted suicide and aid in dy ing (AID), one of the most controversial and contentious topics in health care today. As Andrea Frolic noted in a presentation at the American Society for Bioethics and Hu Vol. 118, No. 5 Vol. 118,

▼ aid in dying, assisted suicide, end-of-life care, nurse role in end-of-life care nurse role end-of-life care, suicide, assisted aid in dying,

later in 2016. Given the populations C, article presents the discussion that occurred during a policy presented article occurred the discussion that on aid in dying (AID) dialogue presents May 2018

▼

these states, nearly one in five Americans now lives points raised. points Keywords: ABSTRACT This the argu explored in October 2016. Panelists annual conference of Nursing’s American Academy at the nurses in assisting for and the role of AID legislation, expansion state growing and against the for ments the expert to and four respond commentaries offered are Recommendations AID. who request patients

JN A was convened, five states—Oregon (1994), Wash (2015), ington (2008), Montana (2009), Vermont and California (2016), had approved AID; they were joined by Colorado and the jurisdiction of Wash ington, D of in a jurisdiction where AID is legal. A policy dialogue presented at the American Academy of Nursing’s annual annual Nursing’s of Academy American the at presented dialogue A policy conference in DC. Washington, Assisted Suicide/Aid in Dying:Assisted Suicide/Aid Role? Is What theNurse’s

50

Ann B. Hamric, PhD, RN, FAAN PhD, Hamric, B. Ann SPECIAL FEATURE SPECIAL Downloaded from https://journals.lww.com/ajnonline by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX1AWnYQp/IlQrHD3IJrtBKuSsQVpQwMEq6+bHUi0t0wbMyk+q5EcTcCpc5c= on 05/22/2018 Downloaded from https://journals.lww.com/ajnonline by BhDMf5ePHKav1zEoum1tQfN4a+kJLhEZgbsIHo4XMi0hCywCX1AWnYQp/IlQrHD3IJrtBKuSsQVpQwMEq6+bHUi0t0wbMyk+q5EcTcCpc5c= on 05/22/2018 By Ann B. Hamric, PhD, RN, FAAN, Judith K. Schwarz, PhD, RN, Lewis Cohen, MD, and Margaret Mahon, PhD, CRNP, FAAN, FPCN

Lewis (Lew) Cohen, MD, is a consultation psychia- might somehow encourage trist at Baystate Medical Center and professor of psy- the patient to conclude that chiatry at the University of Massachusetts Medical hastening death was morally School–Baystate. Dr. Cohen conducts research into acceptable—or that the nurse palliative medicine and chronic kidney disease and might inadvertently cross a le- authored No Good Deed: A Story of Medicine, Mur- gal or professional line by ex- der Accusations, and the Debate over How We Die, ploring this desire. Fortunately, about two nurses who were accused of euthanasia. much of that misplaced fear Margaret (Mimi) Mahon, PhD, CRNP, FAAN, FPCN and anxiety has dissipated. But was the senior NP in palliative medicine at the Uni- clinical uncertainty persists, versity of Maryland Medical Center in Baltimore at despite growing numbers of the time of the policy dialogue. She served on the position statements and guide- Ethics Advisory Board of the American Nurses As- lines that seek to assist nurses sociation (ANA) from 2014 to 2017. She is currently in clarifying their responsibil­ with the palliative care team at the National Insti- ities to suffering patients who tutes of Health Clinical Center. Dr. Mahon notes that seek information about dy- her remarks do not represent the opinion of the U.S. ing. Government. We now have accumulated Senator Claire Ayer from Vermont was educated data from 20 years of experi- as an RN and holds a degree in environmental stud- ence in Oregon, where citizens ies from Middlebury College. She has served in the who are both terminally ill and Judith K. Schwarz, PhD, RN Vermont Senate for over 14 years, and she currently decisionally capable can le- chairs the Vermont Senate Committee on Health gally request a prescription for a lethal amount of and Welfare. She was one of the lead authors of Ver- medication. Because Oregon requires physicians mont’s Death with Dignity legislation, shepherding who write these prescriptions to document their it successfully into law.—Ann B. Hamric, PhD, RN, ­patients’ reasons for the request, their diagnoses, and FAAN other clinical details, we know that almost all who use the law are enrolled in hospice care and die at JUDY SCHWARZ home with family or other loved ones in atten- I know a good deal about requests for assistance in dy- dance. We also know that their reasons are not be- ing because of the clinical work I have done for over cause of poorly managed physical pain but rather a decade—which is to answer questions about end- because of existential suffering, including exhaustion of-life options posed by terminally and incurably ill from having to endure the final stages of a terminal patients and their families. End of Life Choices New disease, lack of control, and fears about overburden- York, previously known as Compassion and Choices ing loved ones—reasons that cannot readily be medi- of New York, is a not-for-profit, end-of-life advocacy cated away. and support organization whose mission is to im- There is also no doubt that those who take ad- prove care and expand choice at the end of life. All vantage of such laws are a self-selected minority of all of the terminally ill patients I work with are enrolled terminally ill or dying citizens in those states. These in- in home hospice or are receiving palliative care. As dividuals want to die as they have lived—“in charge” many of you know, physical pain can usually be read- and making important decisions about the timing and ily managed by these skilled clinicians. The calls I get circumstance of this important and final stage of their are from decisionally capable patients who conclude lives. In states with AID, the process to acquire a pre- that their suffering has become unbearable, and they scription for lethal medication takes time and perse- seek information about end-of-life options that would verance. enable them to hasten their death. New York State, where I work, does not permit More than 10 years ago, I began to explore the AID, and of course, euthanasia is illegal and profes- difficulty many clinicians experience in distinguish- sionally unacceptable across the country. The options ing between morally and legally accepted clinical I discuss with those who seek information and sup- interventions that hasten dying, such as forgoing a port regarding control of the timing of death involve life-sustaining treatment like mechanical ventilation, stopping all life-prolonging measures, including food and other acts that also hasten dying but are labeled and fluid. VSED is rarely anyone’s first choice to has- as suicide or assisted suicide.6 In those earlier days, ten death but often is the only legal option available many hospice nurses feared that having an open to relieve suffering that has become intolerable. It discussion of a patient’s desire for a hastened death requires a decisionally capable and very determined [email protected] AJN ▼ May 2018 ▼ Vol. 118, No. 5 51 patient who makes an informed and voluntary deci- and support regarding patient-controlled dying. sion to fast “unto death.”7 Realizing this decision also Nurses in all specialties need to be better prepared requires family or other social support, caregiving and professionally supported than they are currently. help, and importantly, access to hospice or palliative oversight.6, 7 LEW COHEN The question. So the question remains, how should Many pro- nurses respond to a request for information about ponents of patient-controlled dying when that request is made by assisted sui- a decisionally capable and suffering patient? I believe cide are un- nurses should be well informed and able to respond comfortable to their patients’ questions about legal options that with the pe- might permit patient-controlled dying in their state. jorative con- In states that have legalized AID, the information notations of provided should include explaining the state law’s the word requirements to patients and their family members, “suicide” the law’s pros and cons, and the assurance that the and have caregiving team will continue to provide excellent pal- been seek- liative and symptom management—whatever the ing a more patient’s choice. palatable Such discussions should be provided only after a nomencla- thorough assessment of the reasons for the patient’s ture. In request and skilled efforts to remedy any symptoms 2006, the of suffering that can be palliated. Most patients just Oregon De- want to know that choices exist and that they still partment of have options, though they don’t often act on those Human Ser- choices. Up to 30% of patients who receive medica- vices went tion to hasten their death do not use it and in fact die so far as to Lewis Cohen, MD as a result of their underlying disease.8 adopt a pol- It should also be noted that no health care profes- icy banning the expression “physician-assisted sui- sional can be expected to provide information or sup- cide” in favor of “aid in dying,” or “death with port that conflicts with their personal conscience or dignity.”12 strongly held values. If a professional feels morally Personally, I believe we should become comfort- unable to provide such information in response to able with all these terms, including “suicide”—a po- patient requests, the patient should be transferred to tent word describing a behavior that some people a colleague who can. consider to be a sin, others a crime, and still others Nurses need access to guidelines that are both clini- the ultimate expression of psychopathology. Con- cally useful and comprehensive to help them navigate versely, there are many individuals who regard suicide these emotionally, ethically, and professionally treach- as nothing less than a “fatal freedom” and ardently erous waters. These guidelines are needed both in the believe it should no longer be constrained by religion, growing number of states that have legalized AID and law, or organized medicine. in those that have not yet done so. Whatever term is chosen, since 1997 the U.S. In the most recent national Gallup poll,9 70% ­Supreme Court has encouraged individual states to of respondents believed that physicians ought to be wrestle with the issue. In a ruling that combined cases allowed to provide AID to suffering and incurably from Washington State and New York, Chief Justice ill Americans. [Editor’s note: since this discussion William Rehnquist wrote that the court’s decision took place, Gallup has released results of another “permits this debate to continue, as it should in a poll that puts that figure at 73%.10] Yet many other democratic society.”13 citizens and clinicians are opposed to such interven- I believe that AID laws are going to be approved tions for a variety of reasons, often involving strongly throughout the country for three reasons. First, there held religious values. One needs to be a careful con- will be more celebrities, like Desmond Tutu and Brit- sumer of seemingly factual stories of patients who de- tany Maynard, who maintain that this should be an scribe their experiences in states that have passed AID end-of-life option—taking its place alongside other legislation. For example, one woman stated that her death-hastening medical practices, such as withhold- insurance company refused to pay for chemotherapy ing and withdrawing life support treatments, VSED, but offered to pay for lethal medications. On closer ex- and the vigorous use of analgesics. Second, as baby amination, the facts did not support the conclusion.11 boomers age and actively deal with their own or their As the most trusted members of the health care parents’ deterioration, they are going to insist on hav- team, nurses will increasingly be asked for information ing assisted dying as a choice. And third, America is

52 AJN ▼ May 2018 ▼ Vol. 118, No. 5 ajnonline.com built on the fundamental values of autonomy and come to appreciate that death no longer means failure self-determination. and it is a worthwhile goal to take steps to improve In the week leading up to his 85th birthday, Des- the quality of patients’ dying.19 Arriving at decisions mond Tutu, Archbishop Emeritus of Cape Town and shaped mainly by respect for patient preferences is a a Nobel Peace Prize laureate, spoke about his dismay welcome development. It is satisfying for me as a psy- over the way his friend Nelson Mandela was artifi- chiatrist and palliative medicine researcher to know cially propped up for photo opportunities with visiting that there is a younger generation of Americans— dignitaries while hospitalized. Witnessing Mandela’s laymen, nurses, and physicians—who instinctively last days crystalized the archbishop’s thinking, and he feel these changes to be correct and who want profes- wanted to influence a debate over AID that was taking sional organizations to reexamine previous guidelines place in the United Kingdom’s House of Lords. Tutu of ethics and conduct. stated, “Now . . . with my life closer to its end than its beginning, I wish to help give people dignity in dying. MIMI MAHON Just as I have argued firmly for compassion and fair- Requests for hastened death ness in life, I believe that terminally ill people should be are uncommon in the careers treated with the same compassion and fairness when of most nurses but challenging it comes to their deaths. Dying people should have when they occur. Thoughtful, the right to choose how and when they leave Mother experienced people from a Earth. I believe that, alongside the wonderful pallia- cross section of disciplines tive care that exists, their choices should include a and professional organiza- dignified assisted death.”14 tions have developed position Support grows. The growing support in U.S. statements, and over the past public opinion polls for death with dignity reform few years many scholars have is also apparent among medical professionals. In published data to guide discus- 2014, for the first time, a majority of U.S. physi- sion and decision making. cians—54%—backed the rights of patients with an The ANA position state- “incurable illness” to seek “a dignified death.”15 The ment on assisted death pro- survey included more than 17,000 respondents. NBC hibits nurses’ participation in News quoted Arthur Caplan, head of the division of assisted suicide and euthana- bioethics at NYU Langone Medical Center, as having sia,20 in part because to do so observed, “[This] represents a remarkable shift. If is a contradiction of the ANA’s physician opposition [to AID] continues to weaken, Code of Ethics for Nurses with it is likely that despite fierce resistance from some reli- Interpretive Statements.21 “The Margaret Mahon, PhD, CRNP, FAAN, FPCN gious groups and some in the disability community, Right to Self-Determination” more states will follow Oregon, Washington and Ver- [Section 1.4 of Provision 1] mont, and legalize.”16 states that nurses “may not act with the sole intent Another factor that will inevitably lead to further to end life.”21 The American Medical Association legalization and extension of AID practices is our so- opposes physician involvement in hastening death.22 ciety’s demographics. The aging boomer generation The American Academy of Hospice and Palliative is actively encountering the nightmare of dementing Medicine has taken a position of studied neutrality illnesses, and it is facing a worsening social situation but has expressed serious concerns about the prac- created by harsh economic realities and the absence tice.23, 24 Hospice and Palliative Nurses Association of family members who are willing or able to provide position statements, also endorsed by the Oncology personal care. Susan Jacoby aptly observed, “My gen- Nursing Society, advise that nurses not participate eration’s vision of an ageless old age bears about as in assisted suicide.25, 26 much resemblance to real old age as our earlier ideal- As noted, the suffering that prompts requests for ization of painless childbirth without drugs did to real hastened death is more than physical. The most com- labor.”17 mon reasons for requesting hastened death include Faced with inevitable decay and the possibility concerns for loss of autonomy, loss of dignity, inabil- of unremitting suffering, it is reasonable to predict ity to enjoy life,27 fear of losing intellectual capacity, that our society is likely to reconceptualize suicide— belief that one is unworthy or has a useless life, guilt shifting away from the oversimplified position that a about being or becoming a burden to family,27 or an- wish to hasten dying equates with suicide, which in ticipating dependence.27-29 A common theme underly- turn equates with mental illness—and to rewrite our ing many of these concerns is loss of control. laws and policies about end-of-life care options.18 Data from Oregon confirms that fear of “loss of Americans increasingly want to be in control of autonomy” and “decreasing ability to participate in their lives and their deaths to the fullest extent possi- activities that made life enjoyable,” rather than pain ble. The nation’s mores are evolving. Medicine has or other physical suffering, are the leading reasons [email protected] AJN ▼ May 2018 ▼ Vol. 118, No. 5 53 for a terminally ill patient to request a lethal prescrip- members often judge suffering as being greater than tion.8 One interpretation of this fear of loss of control does the dying patient. Although we cannot alleviate is that many Americans are petrified of being aban- everyone’s suffering, knowledge of palliative care al- doned by the health care system. People want the lows us to alleviate most physical suffering, and often ability to take action when they feel that they have other burdens as well. Palliative care professionals been or might be abandoned. focus not only on physical but also on psychological, There are a number of problems with allowing spiritual, and interpersonal symptoms. We have an these fears to determine public policy. For one thing, obligation to try and alleviate suffering as much as though many believe that death should be within our possible for all of our patients, but this is not “has- control, death is one thing that is very much beyond tening death.” In fact, providing excellent palliative our control. In addition, some fears of suffering may be care is antithetical to hastening death. illusory. They may be based on outdated information We have to know who we’re treating. Do we or a subjective impression of the earlier suffering of a want to hasten someone’s death because of the pa- loved one—for example, “Grandpa died of lung can- tient’s suffering—or because of our suffering? Pa- cer; he was in agony for months, and I’m not going tients worry about the burden an illness would place that way.” Families may exaggerate fears of suffer- on family. Family members worry about a protracted ing: several researchers have found that family process of dying, either because it takes too long, or

A Legislative Perspective: Senator Claire Ayer

I am an RN and have served in the Vermont Senate for over 14 years. I had a key role in the passage of Vermont’s aid-in-dying (AID) legis- lation, the “Patient Choice and Control at the End of Life Act.” It took 10 years to even mention AID in the Vermont Senate; this issue and the surrounding discussion has a strong emotional component, regardless of the facts. It took 12 years to pass the legislation, even with a bill patterned on Oregon’s, and many years of published ex- perience from Oregon showing that the law was practiced as it was intended. Even contentious legislation such as recognizing mar- riage of gay partners did not take as long to enact. As discussed by other panelists, legislators must appreciate the power of words and how they frame discussion: opponents of the act used “suicide”; proponents used “aid in dying.” We deliberately framed our legis- lation as an issue of patient choice and control over one’s dying. The primary countervailing state interests opposing the legisla- tion are the interest in preventing suicide; the interest in preserv- ing life; and the interest in protecting innocent third parties, like family members of those who might choose AID. Although it is easy to see the logic of framing the issue in terms of suicide, suicide is fundamentally different from AID. Suicide is Vermont State Senator Claire Ayer. Photo © the rejection of life, a permanent solution to a temporary problem. Associated Press. Those who choose AID embrace life.4 AID takes 45 to 60 days to fol- low the process, including making accurate diagnoses of a terminal condition and ensuring that there are no other medical options to change the outcome of death. Family survivors of patients who choose AID do not experience the adverse mental health effects suffered by family members of suicide victims.5 If we stop suicide, people may go on to productive lives. If we stop those who choose AID, we have just prolonged their deaths and added to their suffering. We need to promote rational choice that supports meaningful death. When evaluating proposed laws in other states, I recommend looking at how the law is patterned (has the legislation been modeled on states with successful experiences?) and for the presence of safeguards (for example, how long is the waiting period? Is the diagnosis correct? Does the patient have capacity, no clinical depression, and full information about hospice and palliative care? Is there data tracking to ensure that vulnerable or minority patients are not being discriminated against in being denied treatment in states with AID? Are patients assured that they will receive excellent medical care when they are dying?).

54 AJN ▼ May 2018 ▼ Vol. 118, No. 5 ajnonline.com What Nurses Can Do

•• Become educated on aid in dying (AID) so that you can provide factual information to patients and their families. This includes becoming educated on hospice care and the process of AID if it is approved in your state, so that you can answer patients’ questions and help them clarify their choices. •• Work to clarify the distinctions between your personal values and professional obligations. Conscience- based objections, whether pro or con, and conscience-based refusals should be respected by your team colleagues and employer. If you feel morally unable to provide a patient with information, you should transfer the patient to a colleague who can provide such information. ••Keep channels of communication with patients and their families open. Patients and families who are struggling with this issue need to know that their concerns and questions can be openly discussed with- out negative judgment from their health care providers. •• Learn how to have “difficult conversations” with patients and their families. This is a skill that can be learned, and training is available. •• Identify resources that can help patients struggling with AID (a number are listed in this article), on both sides of the issue. •• Ensure that your patients know that stopping aggressive treatment does not mean stopping care. Avoid terminology that could lead patients or families to think that medical care would be stopped or patients abandoned based on certain choices they might make. •• Be informed about legislative initiatives in your state and make your voice, experiences, and perspective heard. ••Request and support the development of guidelines, particularly in hospice settings, for caring for pa- tients at the end of life. Such guidelines are needed in all states, regardless of the status of AID legislation.

because they fear the potential suffering of their loved requests for hastened death made of me have come one. Ferrand and colleagues found that 61% of re- from affluent white people. Emanuel and colleagues quests for hastened death came from patients, 33% found that people who request assisted suicide are typ- came from family or close friends, and about 6% ically old, white, and well educated.32 In the Oregon came from nurses.30 data, 97% of the patients who requested assistance in Assisted suicide legislation is often referred to as dying were white.8 African Americans accounted for “death with dignity laws.” The implication is that as- 0.1% of requests; Hispanics 1.1%, and American In- sisted suicide is the way to a dignified death. Our goal dians 0.2%. Those three minority groups accounted in health care should be that every person’s death is for only 1.4% of requests. dignified. Palliative care and hospice providers work In health care, there are good reasons to limit in- for each person’s dignified death, with a commitment effective treatments; however, members of certain never to hasten death. With the growth in these state cultural groups fear that health care professionals legislative initiatives comes the responsibility to in- are depriving them of needed care and will take mea- crease our knowledge about what is good palliative sures to end their lives when their care has become and hospice care. too complicated, too expensive, or if the treating Words of caution. A request for hastened death team has lost interest. As Georgetown professor Pa- should never be taken at face value nor defended as tricia King stated in a discussion about assisted sui- preserving the autonomy of the patient. Rather, any cide legislation in Washington, DC, “Many in the request should be examined carefully. Ganzini and black community distrust the health care system and colleagues studied the frequency of depression and fear that racism in life will translate into discrimina- anxiety in people pursuing assisted dying in Oregon tion in death.”33 Rev. Eugene Rivers, a minister from and found that “[a]mong patients who requested a Boston, called DC’s legislation “back-end eugenics” physician’s aid in dying, one in four had clinical de- designed to eliminate poor blacks. Officially sanc- pression.”31 In a French study, one-third of all patients tioning a provider’s role as a hastener of death will requesting AID were considered clinically depressed only worsen such fears. at the time of the request.30 We have to ensure that the An individual’s request for hastened death should decision made by a patient is truly autonomous and never be taken as the end, but rather as the beginning not governed by clinical illness that can be treated. of dialogue and interventions. We need to see such There is an additional caution in supporting AID. requests as opportunities to implement interventions In my career, I have been struck by the fact that all that improve the lives of those who are suffering. The [email protected] AJN ▼ May 2018 ▼ Vol. 118, No. 5 55 request for hastened death is never casual, and the The ANA Ethics Advisory Board agrees with the suffering is real. We must continue to strive to im- stated recommendations and offers the following ad- prove end-of-life care. ditional recommendations: First, conscientious objec- tion is morally and ethically acceptable, but it must COMMENTARIES be timely and appropriate to avoid patient abandon- Following the conference, and after developing this ment. This sentiment is captured by our Canadian article, we invited experts from various groups to re- colleagues who recently drafted a framework on AID spond to the points we raised. Some of these experts to guide nurses to “take all reasonable steps to ensure attended the policy dialogue, but some did not. We re- that the quality and continuity of care for clients are ceived 11 commentaries, and selected the four below. not compromised.”35 Second, every patient deserves Response submitted on behalf of the American effective and equitable treatment and care, regardless Nurses Association Center for Ethics and Human of race or socioeconomic or other demographic fac- Rights Advisory Board. We are grateful to the Ameri- tors. Nurses must be aware of cultural considerations can Academy of Nursing Expert Panel on Bioethics at the end of life in order to provide individualized for tackling a sensitive and controversial topic. While care. Third, nurses must respect patient autonomy there are various perspectives with subtle nuances, it and act to minimize patient suffering by striving for is clear that discussion of AID cannot be reduced to optimal end-of-life care. Finally, nurses must under- an artificial dichotomy. The range of opinions among stand employer policies and procedures on AID. the public and among nurses was well represented in We concur with Dr. Cohen’s statement highlight- this panel discussion. ing the responsibility of professional organizations to examine guidelines of ethical conduct. The ANA is actively engaging in broad discussions to further ana- lyze and explore careful language and definitions at We need to promote rational the crux of this debate, such as the meaning of “par- ticipation” and “hastening death.” In 2018, the ANA will be updating its current position statement Eutha- choice that supports nasia, Assisted Suicide, and Aid in Dying.20 This is an opportunity to strengthen the support for nurses and meaningful death. further clarify ethical expectations of nurses caring for individuals who consider or participate in AID. Assistance in Dying: An Important and Narrow Question for Nurses: Helen Stanton Chapple, PhD, We firmly agree with Dr. Schwarz that nurses MA, MSN, RN, CT, Creighton University. The panel’s must be knowledgeable and prepared to respond to charge is both important and narrow: to offer guid- patients requesting AID. Nurses need ethical and le- ance to nurses in responding to their patients’ queries gal guidance and support for decision making, espe- about hastening death. Such guidance is important to cially in states where AID is legal. The prevalence of both the patient’s and the nurse’s well-being. In the AID legislation is increasing. Nurses must continue hospital, clinicians are reluctant to recognize a dying to provide compassionate care to all patients and ad- situation and respond to it. It seems irrelevant when dress patient problems while respecting the patient’s their patients can still speak and make eye contact. decisions without judgment.21 This includes informing (By contrast, hospice home care nurses are quite used patients of the legal options at the end of life without to responding.) Therefore, the context of the conver- bias, judgment, or coercion. Nurses must share infor- sation matters. It raises existential questions for the mation that is truthful and scientifically based, rather nurse in terms of one’s own mortality and that of the than the biased or inflammatory stories sometimes patient. How real and close is death to either of them? portrayed in the media. What is the meaning of the mutual and individual suf- Dr. Mahon successfully articulates the role of pal- fering embedded in this particular dying situation? liative care at the end of life. Palliative nursing care But the question is also narrow in that it concerns affirms life and is an evidence-based practice that an extremely small subset of all the dying patients focuses on individualized delivery of care.34 Dr. Cohen’s even a hospice nurse might encounter. The vast ma- comment regarding the “vigorous use of analgesics” jority of dying patients are not acknowledged to be so may suggest an inappropriate use of medications. The until they are far too sick to express an opinion about importance of recognizing the comprehensive thera- how their dying process should go. In fact, only by be- peutic skills of palliative care professionals should coming dead can some patients prove that they were, also be noted in the context of this discussion. The in fact, previously dying. intent to provide therapeutic medication should not The rescue endeavor is so ingrained in our culture be confused with administration intended to end a and our health care system that, more often, nurses patient’s life. are dealing with an ambiguous picture—some things

56 AJN ▼ May 2018 ▼ Vol. 118, No. 5 ajnonline.com are getting better and some things are getting worse. or societies that are communitarian in nature, wherein Nurses often identify the dying situation first and decision making is family, kinship-network, or com- suffer the moral distress that comes with continuing munity based. This discussion is particularly impor- to treat patients aggressively who, we are sure, will tant in the face of increasing demographic diversity. not survive this hospitalization. Bedside clinicians Los Angeles, for example, is one of the most diverse find themselves caught in the crosshairs when res- cities in the world: it has now reached a Latino and cue medicine—the desperate expression of an affluent Hispanic (as well as Spanish-language) plurality. The society able to recruit technology to deliver physical bioethics community is, itself, dramatically less diverse salvation—and dying—the cruel reality of the human than its sociocultural context. This warrants a full ex- condition—face off. Nurses become proxies for the amination, not only of the role of culture (of which rest of U.S. society, which cannot reimagine a health religion is a part) in the formulation of bioethical the- care system based on something more balanced for its ory, but also of how that plays out in specific clinical members than the unending pursuit of more time alive. issues such as AID. In health care’s rescue-dominated atmosphere, A third area of concern is that no distinction is identifying dying situations is itself a challenge.36, 37 As made between the critically different questions: should death becomes tangible, we must stand up to it rather society authorize AID? If so, should physicians be than run in the other direction. For nurses that means involved, and how? And if so, should nurses be in- continuously pointing the team toward the primacy volved, and how? (Though the discussion is different, of patient goals in planning care. one can ask these same questions about euthanasia.) In Awareness of Dying, published in 1965, Glaser Modern nursing’s ethical corpus has long and endur- and Strauss urged us to work toward open awareness ingly proscribed nurse participation in aiding death, of dying because it holds the best possibility for at- specifically by giving a drug. Lystra E. Gretter’s Flor- tending to the needs of the dying patient.38 Patients ence Nightingale Pledge states, “I . . . will not take who face death and are able to verbalize their wishes or knowingly administer any harmful drug.”39 It is a for AID enjoy this open awareness, as do their care- paraphrase of the Hippocratic oath and, in this case, givers. It is a gift. But they make up a tiny percent- applies to both AID and euthanasia. The ANA’s cur- age of the 2.5 million persons who die yearly in the rent version of its Code of Ethics for Nurses with In- United States, many of whom continue to die badly. terpretive Statements 21 proscribes nurse participation Access to AID is not the “fix.” Open awareness of in intentionally taking a human life. This applies to ambiguity, of the possibility that this patient might AID, euthanasia, and legally authorized capital pun- be dying, is a skill more needed by nurses than craft- ishment. Space does not permit a discussion of why, ing an ethical role and response when assistance in but for nurses, it is “no” to any form of participation dying is broached. in taking life. Marsha Fowler, PhD, RN, FAAN, Azusa Pacific Uni- Whether AID should be legally and socially per- versity. The advantage of any dialogue is that it brings missible is an entirely different question, even for together differing perspectives to shed light on an nurses. If AID continues to be authorized across the issue; this dialogue does just that. At the same time, country, perhaps society should also create a new cat- by virtue of time constraints, most public dialogues egory of nonnurse caregiver, a “registered Charon” cannot be comprehensive or systematic. Thus, this who ferries us across the stormy waters of life to the dialogue does not touch upon several salient ethical place of departed persons. concerns in the discussion of assisted suicide or AID. Christine Grady, PhD, RN, FAAN, Department of In this brief space, I will identify three areas that re- Bioethics, National Institutes of Health Clinical Cen- quire further consideration. ter. Four thoughtful speakers and lively discussion First, religious perspectives are often treated dis- ensued at the timely and important policy dialogue missively, with an inaccurate presumption that all on bioethics at the American Academy of Nursing’s strongly held faith prohibits AID. There is rarely any 2016 conference. My sense from this dialogue and substantive analysis of theological arguments that the written summary on assisted suicide or AID is undergird different religious perspectives, some of that nurses across many settings feel a critical need which are universal and not tied to particular theo- for constructive guidance and opportunities for dia- logical points. By religious arguments, I am referring logue. Nurses understandably have mixed emotions to learned, theological perspectives and not to gen- and varied information about AID. eral, precritical perspectives found among laity. In First, public and professional attitudes are clearly part because religion does play a role in clinical deci- changing to support giving terminally ill persons sion making for a large segment of many societies, more choice over the timing, location, and manner it is all the more incumbent upon ethicists to under- of their own deaths. As noted, almost one in five stand religious or theological ethical perspectives. Americans has access to AID, given the populations A second, related issue is the role of culture, partic- of the five states where AID for terminally ill patients ularly that of more atomized cultures vis-à-vis cultures is legal; additional jurisdictions are considering it. [email protected] AJN ▼ May 2018 ▼ Vol. 118, No. 5 57 Wide acceptance of a patient’s right to refuse or with- REFERENCES draw life-sustaining therapies and increased use of ter- 1. Frolic A, et al. Physician-assisted dying: a readiness assess- minal sedation and VSED, coupled with changing ment study of physicians and healthcare professionals in a Canadian tertiary care medical center. Washington, DC: demographics, anxieties over the devastation of de- American Society for Bioethics and Humanities 2016. menting illnesses, and recognition that terminal illness 2. Span P. 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