Discussion
There is broad agreement about how palliative care clinicians ought to respond to patients who request assistance in dying. They are taught to systematically explore the reasons behind the request, to identify and intensify efforts to relieve pain and suffering, to consult specialists in the relief of psychological or spiritual anguish as needed, and to commit to nonabandonment and the identification of mutually acceptable solutions to the patient's suffering. When unacceptable suffering persists despite all efforts, most palliative care clinicians agree that decisionally capable patients who request assistance in dying should be informed about all legal options that permit a hastened death. Those options include forgoing or withdrawing life-sustaining interventions, VSED, and sedation to unconsciousness for relief of intractable suffering.
In most cases when hospice patients request assistance in dying, the underlying source(s) of suffering that prompts the request can be ameliorated by the provision of comprehensive palliative care. When suffering cannot be relieved in a manner that is satisfactory to the patient, the option to VSED as a means to shorten life may present a welcome strategy. It remains the case that few of those who are informed of this option decide to pursue it. Sometimes, the patient's request for assistance seems more a momentary or fleeting wish for death and does not proceed to the level of enduring and determined desire necessary to intentionally hasten dying. In other cases, the patient's knowledge that he/she has "a way out" seems to provide relief from feelings of desperation and entrapment. Patients' awareness of their continuing ability to control this important aspect of life can in itself be therapeutic.
More than a decade ago, when palliative care clinicians first began discussing VSED as one of the "palliative options of last resort," they acknowledged that the legal precedents guiding this option were less developed than those supporting the refusal of other life sustaining interventions such as ventilators and feeding tubes. However, in the intervening years, a growing number of legal scholars and palliative care clinicians have concluded that VSED is a legally acceptable option. Yet, even when clinicians agree about the legality of this option, questions may persist for some providers about the morality and professional advisability of supporting the practice. Clinicians' concerns about this option may arise from a number of sources.
Clinicians' Concerns
When a terminally ill patient chooses to forgo further use of life-sustaining interventions in order to hasten or cause death, there is a legal and ethical consensus regarding the cause of death. It is agreed that the underlying disease that necessitated use of the life-sustaining measure causes death, not the decision and subsequent removal of the life-sustaining intervention. Discontinuing unwanted treatment allows the patient to die "naturally" of the underlying disease; such decisions are routinely made by terminally ill patients and/or their families and are supported by hospice and palliative care clinicians.
However, when a patient chooses to forgo food and fluid, some argue that the patient has introduced the cause of death—specifically, dehydration—and such a choice may seem closer to an unethical act of suicide. Some clinicians believe that any act that intentionally hastens or causes death is always morally wrong, even when taken to escape intolerable suffering. Those holding this view may also believe that informing a patient of the VSED option would also be morally wrong because by doing so the clinician might influence the patient to choose this immoral option, and providing this information would be condoning and cooperating in wrongdoing.
It is established professional practice that clinicians are not required to act against their own strongly held moral or religious beliefs, yet it is also the case that health care professionals are obliged to inform their patients about all legally available treatment options. In the face of such moral conflict, a clinician who is morally opposed to a particular practice is expected to refer the patient to another who will provide information and support for all legal medical options before withdrawing from the case.
Other clinicians who have not witnessed a VSED death may fear that if they inform an already suffering patient about this option, they might indirectly encourage a dying process that is unduly painful, prolonged, and "inhumane." Such fears are not supported by clinical reality. Several small empirical studies and an increasing number of anecdotal reports suggest that VSED provides most patients with a peaceful and gentle death that is generally well tolerated and occurs within 2 weeks of beginning the fast.
Additional Clinician Responses
When hospice patients ask their professional caregivers for help in hastening death, clinicians often experience a "storm" of emotions that may include guilt, shock, self-doubt, failure, sadness, and self-blame. Such feelings may influence the clinician's response to the request and adversely influence the patient's care. When hospice patients specifically ask their nurse or social worker to help them die sooner, some clinicians may feel they have failed their patient by not adequately managing their symptoms of suffering. Hospice clinicians rightly view themselves as experts in symptom management—throughout the whole of the dying process. The clinical goal is to help the patient experience a "good" death that occurs naturally. When patients ask for information and/or support for hastening death, some simply say, "I can't help you with that," which effectively stops further communication and eliminates an important opportunity for the nurse to acknowledge the patient's distress, explore the meaning of the desire for a hastened death, and refocus efforts to relieve his/her suffering. Some of the reluctance to enter into an exploration of the request may be driven by fear and misunderstanding about whether legal or ethical liability attaches to a discussion about options that permit patient-controlled dying.
The Patient's Perspective
Patients who live with an incurable and progressive disease often have to accept many losses. Their lives may be filled with pain, physical limitations, dependency on others, and a decreasing ability to engage in activities that once were a source of joy and satisfaction. Some people can accept such limitations with grace and good will, but for others, the inability to have a voice that is heard or to make a choice about dying that is respected is an intolerable affront to their personhood. Many in this group want to know that there are still options and choices available to them during this time. Only the person living with the terminal illness can know when the burdens outweigh the benefits of continuing to live, when suffering becomes unbearable, and when the time has arrived to explore whether and how to hasten dying.
It is important to again note that more people will seek information about VSED than will pursue this means to hasten dying. Nonetheless, those who learn about VSED may feel empowered by the knowledge that they can choose this option without seeking a physician's written order or anyone's permission. Because VSED is a legal option, it can be openly discussed in a thoughtful manner with loved ones and caregivers. Discussions and consideration of this choice further patient autonomy because control remains with the patient throughout the process—whether and when to begin the fast and whether to continue to fast each day until consciousness is lost.
The Ethics Committee's Deliberations
The ethics committee was composed of approximately 20 persons with a variety of professional backgrounds including advanced practice and registered nurses, physicians, chaplains, administrators, attorneys, social workers, and a philosopher/bioethicist. After thoroughly reviewing the available literature (and there was not a great deal of material), they invited clinical experts with VSED experience to present their views to the committee. Marilyn was one of the experts invited to address the committee. The committee considered ethical positions in support and opposition to including VSED as a sanctioned option within the hospice organization.
Ethical Support for VSED
The hospice philosophy of care emphasizes patient- and family-centered care that seeks to optimize quality of life by preventing and treating suffering throughout the whole of the dying process, while facilitating patient autonomy, access to information, and personal choice. Consistent with this philosophy is the duty to relieve suffering, which is understood to include threats to personal integrity and wholeness and loss of control and dignity.
Hospice clinicians demonstrate respect for autonomous choice and personal integrity when they provide VSED information to decisionally capable patients who seek professional advice about patient-controlled dying to escape intolerable suffering. They demonstrate fidelity and promise nonabandonment when they assure patients and families that intensive symptom management will continue regardless of what decision is made. The committee noted that while most professional codes of ethics prohibit health care professionals from intentionally acting to hasten or cause death, VSED is patient directed and controlled, rather than clinician imposed.
Ethical Concerns About VSED
It was noted that another traditional hospice value was the commitment to neither hasten nor prolong dying. Thus, participating in support of an act to intentionally hasten death could be viewed as inconsistent with the value that supports finding and creating meaning during all phases of the dying process. Similarly, questions of proportionality could be raised when relief of suffering occurs at the expense of shortening the dying process. Some members of the ethics committee continued to be concerned about the possibility that dying of dehydration would involve an intolerable amount of suffering; they feared that discussing this option with already suffering patients and families might seem contrary to their obligation to relieve suffering and not cause more suffering.
The ethics committee members also acknowledged that when family members or clinicians disagreed with a VSED decision, the experience of watching the patient die in this manner could be a source of significant suffering for those family members and/or clinicians. Thus, if VSED was chosen, patients and families would need ongoing emotional, spiritual, and physical support throughout the dying process, and clinicians might also need such support from colleagues. This hospice had a conscientious objection policy that identified and supported a process for those with moral objections to VSED to withdraw from the patient's team, while another clinician without such objections would join to provide ongoing support.
Other aspects of E.M.'s case were examined for their ethical relevance—for example, the fact that she was neither imminently dying nor suffering unmanaged physical pain was considered. They noted that in Quill and Byock's guidelines for VSED, the prognosis for death was "weeks to months," and patient characteristics included "persistent, unrelenting, otherwise unrelievable symptoms that are unacceptable to the patient…." These experts noted that when the patient was not imminently dying, clinicians should seek a second opinion from specialists skilled in the assessment of depression and spiritual suffering who could facilitate the clarification of motives and alternatives with the patient, family, and professional caregivers. The committee believed that such considerations ought to be included in the development of written guidelines and procedures regarding VSED for the hospice.
Conclusions of the Ethics Committee. After considering the prospective benefits and concerns about informing patients about this option, the committee concluded that, on balance, providing comprehensive information about VSED permits a patient to make an informed decision that reflects their personal values and wishes. The decision to stop eating and drinking was thought to be consistent with the ethical and legal right to forego unwanted life-prolonging measures. And finally, it was thought that educating patients and families about "what to expect" as VSED progresses, providing support as the patient dies, and providing the family with bereavement care after death were actions consistent with the hospice value of patient- and family-centered care.
Their final report highlighted their concern about the absence of organizational procedures and guidelines to provide direction to clinicians, patients, family members, and the hospice organization when future cases of requests for VSED support occurred. They recommended that a subcommittee be created to develop a written VSED policy. Marilyn was invited to become a member of that subcommittee, and she was pleased to do so.