When a Patient Discusses Assisted Dying: Nursing Practice Implications

Rebecca H. Lehto, PhD, RN; Douglas P. Olsen, PhD, RN; Roxanne Raffin Chan, PhD, RN

Disclosures

Journal of Hospice and Palliative Nursing. 2016;18(3):184-191. 

In This Article

Abstract and Introduction

Abstract

Patients with terminal illness in their final stages of life may contemplate their options for death and dying. There has been growing public interest and media attention regarding patient decision making and autonomy at the end of life. The article provides updated legal and ethical discussion about issues and trends associated with the assisted dying debate. A case study of a patient who was considering assisted dying via moving to the state of Oregon is presented. Practical strategies and resources for palliative care and hospice nurses who may have dialogue with patients relative to end-of-life concerns are described.

Introduction

While most humans live with some awareness of personal mortality, patients with terminal illness face the reality of approaching death in their daily lives. There has been increasing recognition over the past decades of the importance for health care providers to engage patients in discussions related to advanced directives and end-of-life preferences.[1] Given growing public interest and media attention to patient decision making at the end of life, the aim of this article is to examine current legal, ethical, and nursing practice issues and trends relative to assisted dying. A case study of a patient who was considering assisted dying via moving to the state of Oregon is presented, and practical strategies and resources for palliative care and hospice nurses who communicate with patients relative to end-of-life concerns are described.

It is widely recognized that individuals with terminal illnesses such as cancer may experience psychological distress relative to the diagnosis and their prognosis.[2] Although distress and ambivalence at the end of life are not uncommon, it can be problematic to discern whether patients are clinically depressed when they express futility regarding treatment options.[1,3] Furthermore, in a health care system that exposes patients to a sophisticated array of treatment options, many of which prolong life without enhancing quality of life, patients who are terminally ill may feel confused or even ambivalent about best choices.[1] Hospital systems continue to be reimbursed for life-sustaining treatments, which may increase the tendency to prioritize extending life.[4] Furthermore, while studies demonstrate that patients would prefer to die in their own homes, such deaths occur in a minority of cases.[5,6] Patients may want control over decisions about how to manage end-of-life treatment but not feel comfortable voicing their views to health care staff especially if the providers remain focused on the provisions of medical treatment. Hospice nurses are educated on how to have effective conversations on advanced care planning and goals for end-of-life care. It is also essential that palliative care and hospice nurses are knowledgeable about current public dialogue regarding terminally ill patient resources such as assisted dying at the end of life, a goal that nurses are not generally formally prepared to discuss.

Patients with life-limiting terminal illness have more awareness than in the past about potential end-of-life options given access to social media and Internet resources.[7] For example, in 2014, Britney Maynard, a 29-year-old woman with incurable brain cancer, intentionally changed her residency to the state of Oregon, where the law allows prescription of medication to competent patients with terminal illness for use in ending their lives. In Oregon, ending one's life in accordance with parameters of this legislation is not considered suicide but rather is an anticipated death associated to the underlying terminal condition. Ms Maynard, in an effort to expand public awareness, blogged openly about her life experiences facing a life-limiting illness that was progressive and incurable. In late 2014, Ms Maynard self-administered legally prescribed medications that ended her life, an event that was broadly discussed in the media both nationally and internationally (http://www.nytimes.com/2014/11/04/us/brittany-maynard-death-with-dignity-ally-dies-at-29.html). Since her death, the state of California passed a law similar to the state of Oregon's that would allow mentally competent terminally ill adults to request prescriptions to use in ending life to reduce the time duration of their dying process (https://www.compassionandchoices.org/2015/12/10/compassion-choices-launches-bilingual-access-campaign-for-california-aid-in-dying-law/),[8] increasing the number of states to 4 that currently have laws in place that legalize assisted dying.[9] Given that the public is becoming more willing to engage openly about assisted dying, there is potential that patients and family members may consult palliative care and hospice nurses about their options in this regard.

Assisted dying remains a controversial issue, with some arguing that it is a reasonable option, and therefore physicians should be empowered to assist patients with dying in some cases.[10] Others, however, insist that the intentional shortening of life is never an appropriate response.[11] Arguments for assisted dying include the following: persons have the right to determine their own fate, aggressive treatment of persons with intractable suffering is itself causing unnecessary harm, and allowing dying or even performing euthanasia in some cases is more beneficial than continuing life.[12] Arguments against assisted dying include the following: clinicians betray the social trust if they become involved in ending life, and treatment options to enhance quality of life may be forestalled, such as better pain management, treatment of depression, or palliative care.[12]

The disability community, in particular, has been a powerful public voice expressing concerns that societal legalization of assisted dying carries inherent potential for abuse.[11,12] Not Dead Yet, a national disability rights organization, has played a strong role in organizing opposition to legalization of assisted dying in the United States.[11] In the broader literature, there continues debate regarding what actions constitute assisted dying, euthanasia, and removal of life-preserving treatments and the ethical implications of these differences.[10] In addition, there is debate regarding the definition and identification of intractable suffering,[13,14] terminal prognosis, and what constitutes decision-making capacity.[15–17] Research also indicates that the forestalling of treatment options may be a reality by finding that some patients with depression received assistance in ending their lives under Oregon's Death With Dignity Act.[18]

The American Nurses Association position statement articulated in 2013 specifically states that nurses do not participate in assisted suicide or euthanasia because such activities are in direct violation of the Code of Ethics for Nurses With Interpretive Statements; the ethics, traditions, and goals of the profession; and nurses' contract to society.[19] The Hospice and Palliative Nurses Association (HPNA), although recognizing shifting legal landscapes and public attitudes, does not support legalization of assisted dying and maintains a position that nurses do not participate in assisted-dying activities.[20] The Oncology Nursing Society (ONS) endorses a similar position statement to that upheld by the HPNA.[21] All three organizations uphold the nurses' responsibility to provide supportive care, to relieve pain and symptoms, and to support the patients' right to dignity, self-determination in decision making, and care regardless of choices at the end of life.[19–21]

Among studies that were conducted with patients, caregivers, and the general public excluding health care professionals, concerns about quality of life and suffering and desires for good death (right time and personal control) were strong factors for pursuing assisted dying.[12] Important rationales against the implementation of assisted dying included the need to ensure safeguards to protect, vulnerable groups and prevent abuse and potential discrimination, giving others the right to make decisions that might not be in the patient's best interest, and moral and religious viewpoints.[12] Among patients with terminal illness with less than 9 months to live, the persons who endorsed euthanasia did not necessarily desire it for themselves.[3] In addition, patients' wishes often changed or were ambivalent in regard to euthanasia.[3] End-of-life decision making is recognized to be multifactorial and rarely incorporates a balanced evaluation of positive and negative elements.[3] Given the uncertainties associated with daily unfolding of events, the process of decision making at end of life rarely follows an exact formula, often evoking emotional intensity with tradition and cultural considerations also often coming into play.[3]

The perspective that hastening death is at times a reasonable, acceptable response to intractable suffering in terminal illness and therefore that physicians should be empowered to assist persons is gaining traction.[8,9] Surveys of public attitudes show support for assisted dying,[12] especially in the light of intractable suffering and terminal illness, with significant opposition especially from certain religious groups and the disability community.[12] Currently, assisted dying and/or euthanasia are legal in the Netherlands, Belgium, Switzerland, and Luxembourg.[12,22] More recently, Canada also approved legislation for the approval of physician-assisted death to be initiated in early 2016.[23] In the United States, assisted dying is legal with statutory guidelines for implementation in the states of California, Oregon, Washington, and Vermont.[22] In Oregon and Washington, assisted-dying laws were passed by public referendum. In addition, other states such as New Mexico and Montana have had legal challenges promoting assisted dying or are considering changing laws against assisted dying.[9,11,22] Currently given ongoing state-specific law changes regarding assisted dying, several nursing and allied organizations are reviewing their position statements on physician-assisted dying. These organizations, which have been opposed in their position statements, include the American Nurses Association, ONS, the National Hospice and Palliative Care Organization, and the HPNA. In addition, the American Academy of Hospice and Palliative Medicine, which has traditionally maintained a neutral stance, is also evaluating their position.[9]

The state of Oregon has the most experience in the United States starting with the passage of the Death With Dignity Act (DWDA) in 1997. The DWDA allows terminally ill Oregon residents to obtain prescriptions from their physicians for self-administered, lethal medications. Under the DWDA, Oregon law specifically prohibits euthanasia, where another person such as a physician would deliberately end another's life by act or omission for reasons of mercy. As of the end of 2014, 1327 people have received prescriptions for lethal medication under the DWDA, and 859 died as a result of taking the prescription.[24] To be eligible to receive a lethal prescription under Oregon's DWDA, a person must be an adult, be a resident of Oregon, be able to make and communicate health care decisions, and have received a diagnosis of a terminal illness. Before receiving the prescription, the following steps must be completed:

  • The person must make 2 oral requests separated by 15 days.

  • A written request signed in the presence of 2 witnesses must be given to the physician.

  • Both a prescribing and a consulting physician must confirm the diagnosis and terminal prognosis of expected death within 6 months.

  • Both the prescribing and consulting physicians' must determine that the person is capable of making and communicating health care decisions.

  • If either physician believes that the person's judgment is compromised by a mental health disorder, the person must be referred for and receive a psychological evaluation.

  • The prescribing physician needs to review feasible alternatives including "comfort care, hospice care, and pain control" with the patient.

  • The prescribing physician must request that the person notifies a next of kin of the request for the lethal prescription before it is dispensed.[25]

In Oregon, there is no minimum time required to establish residency, and the prescribing physician is responsible for determining residency, with guidance provided by the state. This means that relocating to Oregon for the purpose of assisted dying, as Brittany Maynard[26] did, is realistic for many patients. Importantly, in Oregon, for patients who have had physician-hastened death, the cause of immediate death is recorded on the death certificate as either "respiratory failure" or the patient's underlying illness, and the manner of death is recorded as "natural." This notation is similar to that used on death certificates following the removal of a respirator.[9] The concerning implication relative to this is that removing an unwanted medical intervention and allowing a natural death could be construed as synonymous with physician-hastened dying.

We present a case study that is based on interactions with a patient who was a participant in an institutional review board– approved research project that examined the benefits of mindfulness meditation for symptom management and health-related quality of life for patients with advanced-stage lung cancer. Facts of the case have been altered to preserve anonymity and for illustrative purposes. The case study is followed by discussion about the nurse's role within the current ethical context.

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