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JAMA
January 19, 2016
Physician Involvement at the Very End of Life
Is physician-assisted death ever justifiable?—Yes.
Both the lived experience of a person with a serious illness as well as commonly recognized ethical principles provide guidance in answering this question. A woman in her 40s faced her ovarian cancer with great courage, sought available new oncologic treatments, and carefully researched how to relieve potential end-of-life pain, dyspnea, nausea, and other physical or psychosocial distress should it occur as she became sicker. She considered the possibility of physician-assisted death and received a prescription from her physician in Washington because it gave her “a way out” if her existence became intolerable. She was not certain she would use the medication, and she made sure her family supported her plan. In the end, with help from hospice, family, and clinicians, she felt the last part of her life was “surprisingly okay,” and she died comfortably, in her home, the medications potentially intended to hasten death unused.
This case illustrates why physician-assisted death should be considered important enough to be made legally available. Patients with serious illness wish to have control over their own bodies, their own lives, and concern about future physical and psychosocial distress. Some view potential access to physician-assisted death as the best option to address these concerns. Appropriate safeguards, as enacted into law in Oregon, Washington, Vermont, Montana, and (recently) California, create a context in which individual physicians and their patients need not act in secrecy. Patients should be informed about palliative care options (including hospice), have access to expert symptom management, have a predictable time window between making the request and receiving the prescription, and have access to mental health services if needed. In Oregon, where physician-assisted death has been legal for 18 years, 1 in 6 terminally ill patients talks with their families, 1 in 50 talks with their physician, and only 1 in 500 directly accesses this option.1 There are concerns about coercion, vulnerability, and slippery slopes—but these concerns have not been borne out by experience with legally open access to physician-assisted death in 4 states.2
Inquiries about physician-assisted death arise for clinicians in states where it is legal and illegal.3,4 Most common is a proactive planning inquiry, when a patient, faced with a serious illness, has concerns about future physical or psychosocial misery and asks about options. Physicians should respond by exploring patients’ concerns and fears regardless of the legal status of physician-assisted death and their personal stance because many patient concerns can be addressed through careful attention to symptom management, reassurance about commitment to address future problems, advance care planning, and hospice.
Requests to initiate physician-assisted death “right now” are much less common than inquiries, even in the states where the practice is legal.2 Medical assessment should begin with an exploration of the underlying reasons the patient’s situation has become unacceptable to understand the main concerns driving this request.3,4 Reassessing and focusing on palliative efforts to relieve distress are essential. Assessment of the patient’s emotional state, especially whether the request is affected by depression, anxiety or delirium, is also required. An understanding of how the request is aligned with the patient’s personal history and values provides additional perspective; family and friends (with the patient’s permission) should be engaged to provide additional understanding and support. Representative questions for both of these inquiries are included in Box 1.
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• What are you most worried about?
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• Tell me more about exactly what frightens you.
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• What kinds of deaths have you seen in your family?
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• How are you hoping I can help you?
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• What makes your situation most intolerable right now?
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• Tell me more about the worst part.
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• How do you think your family feels or would feel about your wish?
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• Exactly how are you hoping I can help you?
The involvement of physicians in care for a dying patient is a continuum (Box 2). Excellent symptom-directed care is a fundamental requirement and probably prolongs life more often than shortens it. However, for some scenarios, such as severe dyspnea in the last hours of life, aggressive symptom management must take the risk of (unintentionally) hastening death. Allowing natural death by forgoing or stopping life-extending therapy may also shorten survival, but wide societal ethical and legal consensus indicates such decisions are acceptable based on the patient’s right to bodily integrity.5 Providing sedation near the end of life can address intractable symptoms although some physicians hesitate to administer it when the patient’s distress is primarily psychosocial or in response to an explicit request to hasten death. Counseling patients about the possibility of voluntarily stopping eating and drinking is a practice for which limited data and published experience are available.5Prescribing self-administered medication intended to hasten death is currently legal in 5 US states. Prescribing lethal medication administered by a clinician at the patient’s request is legal in the Netherlands, Belgium, Luxemburg, Colombia, and Canada.
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Prescribing symptom-directed care, educating patients and families about what to expect, advance care planning, counseling about end-of-life goal attainment
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Withdrawing or withholding life-extending technology
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Prescribing sedation (potentially to unconsciousness) for intractable symptoms
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Counseling regarding voluntarily stopping eating and drinking
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Prescribing self-administered medication meant to hasten death
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Administering medication to hasten death at patient’s request
aIn decreasing order of societal agreement.
Uncomfortable emotional reactions, difficult discussions, and challenging self-reflection on personally acceptable and unacceptable practices are common for physicians exploring these options.6 It is nearly impossible for physicians or others to work closely with such patients without having some aspect of their personal values and boundaries touched. Conflicts and beliefs about the roles, relationships, faith, and control of physicians involved can be triggered, and clinicians must learn to become aware of and work through these feelings—usually in partnership with trusted colleagues.
Patients who make requests for physician-assisted death often reside in a zone between clinical depression and the sadness of seeing their lives come to a close. Neither depression nor mild cognitive impairment is intrinsically a contraindication for physician-assisted death; however, when these disorders distort judgment about the decision at hand, patients lack capacity to make this decision, and mental health assessment and treatment must become a primary focus. When these patients present complex issues involving capacity, depression, sadness, and grief, patients, caregivers, and treating clinicians all potentially realize benefits when an experienced mental health specialist becomes involved.7
Searching for common ground with patients—for example, a commitment by a clinician who is uncomfortable participating in physician-assisted death to provide palliative sedation if the patient deems their situation unbearable—can honor both patients’ wishes and clinicians’ personal and professional values. Creative thinking with a colleague can potentially allow new therapeutic options to emerge; at other times, referral to another clinician is necessary. An open system with second opinions and consultation can enhance care, expand clinical options, and prevent collateral damage experienced by patients, families, and physicians who respond in isolation and secrecy.5
When physicians are willing to explore and work with a patient requesting physician-assisted death, patients can experience substantial benefits that are more apparent under an open legal process. Patients concerned about future distress can gain peace of mind (eg, “I want to have a back-up plan in case things get really bad.”) Others feel an enhanced sense of trust and confidence in their clinician; still others are comforted by decisions that allow them to retain a needed sense of control. Many more patients are interested in the possibility of physician-assisted death than will actually use it.1Even where physician-assisted death is legal, however, clinicians who cannot morally tolerate their participation should not do so and instead help the patient find an alternative approach that may include changing physicians.
Finally, an important consideration involves language and labels. Physician-assisted “suicide” connotes mental illness, and suggests a self-destructive aspect of such decisions that many find offensive. Even the term physician-assisted death, although better than physician-assisted suicide, puts more emphasis on the physicians’ role than may be warranted. This issue is driven by patients and reflects fundamental concerns of patients living with serious illnesses who feel that they are being destroyed by their illness; they are seeking what they regard as a small measure of self-preservation. The term “hastening death” is less judgmental and respects the profound search for preservation of the self that many patients seek, even at the last moments of their lives.