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Consciously Walking the Fine Line:
Thoughts on a Hospice Response to Assisted Suicide and Euthanasia

Journal of  Palliative Care, Vol.9, No.3, pp.25-28, 1993.
Ira R. Byock, M.D.


Abstract
Hospice has been relegated to the periphery of the debate regarding assisted suicide and euthanasia. While it is true that suffering can be controlled and that comprehensive palliative care represents an alternative to euthanasia, suffering among the terminally ill remains common. In its focus on long term goals hospice has unwittingly forfeited a position of public advocacy and must begin to model its convictions in the public arena as well as in clinical practice.

The potential for growth at the end of life has gone unrecognized in this discussion. Hospice clinicians have an essential contribution to make by telling the stories of patients who have had positive experiences in their dying.

The fine line between sedation for the control of terminal symptoms and actions intended to end life deserves exploration. This effort is aided by examination of our collective values relative to dying and by recognition of the experience of grief before the moment of death. Life beyond the ability to respond in a meaningful way and the care it demands can both be burdensome. Yet, within these experiences there are also qualities that constitute gift and opportunity. Society would avoid these experiences at its peril but might realize transformative potential in their embrace.

At present, a public discussion is raging on the question of assisted suicide and euthanasia. The issue is being driven by the public referendums of the Hemlock Society and by the widely reported suicides assisted by Jack Kevorkian. The medical profession seems able only to react in dismay and to maintain a defensive posture. Hospice, sadly, has been relegated to the periphery of the debate, only occasionally even mentioned in most newspaper, magazine or broadcast stories concerning the topic. Within the public discussion misinformation and confusion abound. Where do we in hospice stand?

Hospice providers have generally opposed public referendums and legislation that would legalize euthanasia and assisted suicide. Most discussions of such actions focus on suffering. Indeed, people who contemplate or request euthanasia or assistance with suicide do so because of current or anticipated suffering.1,2 Of completed suicides among cancer patients with advancing illness identified risk factors have included major depression and uncontrolled pain.2 If hospice could be characterized as having a standard response it is, firstly, that suffering can effectively be relieved by appropriate, multi-disciplinary medical care, and, secondly, that once suffering is controlled and people become confident that they will not be abandoned in their dying, requests for assisted suicide and euthanasia commonly dissipate. 3

Philosophically the two approaches to suffering are widely discrepant. The mission of hospice is care for the terminally ill and their families. Whether one favors or opposes assisted suicide and euthanasia it is etymologically inaccurate to speak of them in terms of medical care, indeed they may represent the antithesis of care. Webster defines care both as a noun: "charge, protection, custody" and as a verb: "to take charge of; to look after; to provide for". 4 Care by its very nature has a quality of continuance, a longitudinal dimension. Hospice care is inherently longitudinal, open-ended; extending beyond the patient's death to bereavement support for loved ones. In contrast, suicide and euthanasia are abrupt, final. An autonomous patient's informed choice of suicide or euthanasia is a statement that medical care is being rejected; that, in the opinion of the individual, medicine has nothing left to offer. The focus for hospice is on life and the alleviation of suffering. Assisted suicide and euthanasia seeks to avoid suffering through the elimination of the sufferer.5 However laudable the motives may be, the goal of assisted suicide and euthanasia is death.

The hospice assertion that all physical pain can be controlled is not well accepted. It is not uncommon to see the terms "uncontrollable pain" or "intractable pain" used in case reports within the medical literature. In a widely referenced recent article by three physicians proposing guidelines for assisted suicide the following statement appears: "Those who have witnessed difficult deaths in hospice programs are not reassured by the glib assertion that we can always make death tolerable, and patients fear that physicians will abandon them if their course becomes difficult or overwhelming in the face of comfort care. In fact, there is no empirical evidence that all physical suffering associated with incurable illness can be effectively relieved."6

This statement must not go unchallenged. Certainly there is no reason to believe that general anesthesia is ineffective in the context of terminal illness. Published reports of the use of sub-anesthetic doses of barbiturates to treat the most difficult instances of pain or terminal agitation document remarkably positive results.7,8 Guidelines for the use of such agents must be refined and made widely available. When physical suffering occurs, at least within affluent Western nations, the deficiency is not one of resources or technology, but rather one of will and commitment. Just as extraordinary means of life saving often are appropriate during curative phases of medical therapy, extra-ordinary means of symptom management are at times appropriate - indeed essential - during palliative care.

Suffering at the end of life does occur. And it must be addressed. On both national and local levels hospice has consistently avoided being strident or controversial. Instead hospice has relied on education and suasion to improve terminal care. In the United States most hospice programs do not have direct prescriptive authority for the patients on their roles. Hospice sights are focused on the long term; on important, durable changes in the way care at the end of life is conceptualized and administered. While this strategy has important advantages and has yielded impressive gains, the reliance on quiet persistence carries with it a quiet acquiescence to the status quo. In truth, hospice must share responsibility for tacitly tolerating the continued, needless suffering of many dying patients.

What would a more assertive approach by organized hospice look like? First, in the public arena hospice must state clearly and repeatedly that physical suffering among the dying is unnecessary.

This would include public acknowledgment that, outside of hospice settings, readily available techniques and technology for controlling physical suffering are frequently not employed. Perhaps in doing so hospice will risk being seen merely as another special interest group "blowing its own horn?" But by its silence hospice risks its hard-earned legitimacy within the public sphere. Hospice organizations, both local and national, have a responsibility for public advocacy on matters related to terminal care and decision making. This issue of critical public importance is central to hospice expertise. The hospice movement's relative silence has been fertile ground in which the assisted suicide movement has grown. Thus, whether the context of ones remarks are a hospital committee meeting or a formal interview for publication, if clinical personnel are to remain consistent with hospice core philosophy and continue as effective advocates for terminally ill patients and families, it may be necessary to risk seeming provocative.

Secondly, in the clinical settings, if the primary hospice commitment truly is to alleviate suffering for our patients and their families, programs must consistently demonstrate that commitment in practice. Hospice philosophy is not only compatible with an energetic, assertive approach to terminal symptom management, it demands it. While one is on firm ground in stating that all physical suffering can be controlled, it would be arrogant to infer that this is always easy. Control of suffering in patients approaching death - whether manifested by escalating pain, dyspnea, cognitive failure or terminal agitation - often requires intensive intervention. Pharmacological interventions alone may require involvement of a physician well-read and experienced in palliative care and an informed, experienced pharmacist. In many American hospice programs medical directors lack the authority or confidence to make recommendations for aggressive measures to control physical suffering in the few patients whose symptoms fail standard procedures. The acceptance of unfamiliar and extra-ordinary modalities such as barbiturate infusions, combined midazolam and haloperidol infusions or the use of methotrimeprazine will require not only persistent education, but also formal protocol development - preferably with involvement of local Pharmacy and Therapeutics committees. In programs, common to many American hospices, in which the medical directors have had few direct clinical responsibilities, this will require enhanced role modeling; formal consultation with specific recommendations, or the direct writing of such orders when indicated.

There is another critical point which merits a central place in a hospice response to calls for assisted suicide and euthanasia. Public discussions of this issue frequently infer that dying and suffering are inextricably entwined, and that the best any of us might hope for as we contemplate the terminal phase of life would be to have one's suffering controlled. Those of us who are clinically involved with hospice know from experience that effective symptom control provides our patients with more than comfort. Once physical discomfort is controlled, and despite the inherent sadness of impending death, the final months, weeks or days often become a rich, rewarding part of life for the person dying and for their family. Some achieve a personal sense of meaning and purpose of life that seems to have actually been facilitated by their terminal prognosis.

This opportunity, the potential for growth at the end of life, is an essential component of the human experience and it must become an essential feature of the public debate. 9 Cicely Saunders has said, "The often surprising potential for personal and family growth at this stage is one of the strongest objections most hospice workers feel for the legalization of a deliberately hastened death..."10 Hospice clinicians must begin telling the stories of patients and families who have had positive, growthful, even occasionally wonderful experiences in their dying. These cases must be documented and read not to divert attention from terminal suffering, but rather to raise awareness of what is risked by suicide and euthanasia.

Even within hospice circles there is not unanimity regarding opposition to assistance with suicide or euthanasia. For some, although hospice should remain an alternative to these options, the absolute nature of the refusal to be involved is too rigid. An increasing number of hospice providers would argue that, while assisted suicide and euthanasia should not be commonly performed, there may be extraordinary circumstances in which compassion compels actions to shorten life. 6,11

It is useful to recognize that in its absolute form the refusal of those involved with hospice to act with the intent of ending the life of patients is actually a dual refusal; being asserted at two recognizable stages of illness. Initially hospice clinicians refuse to assist in the suicide of patients out of the knowledge that symptoms can be controlled, and suffering alleviated, and in service of preserving the opportunity for personal growth at the end of life. Yet, the refusal to take actions to quicken death is maintained, when patients may be somnolent and insensate and when there is seemingly no further opportunity for growth. While extraordinary therapies such as barbiturate infusions to maintain a "twilight sleep" may be effective in controlling symptoms, the question is fairly raised as to what difference there is between acting to maintain this degree of sedation and euthanasia.12

It can not be ignored that many would consider continued life, beyond their ability to respond in a meaningful way, to be at least a philosophical burden, even if they are consciously beyond suffering. Not only for the patient, but also for family and for care providers, continuance of life beyond the ability of the person to respond may represent a burden. This being so, it is necessary to examine this fine line between contracting with a patient to do whatever is necessary to alleviate physical suffering - even to the point of inducing deep sedation - and the intentional ending of the patient's life.

As has been said, the former - acting to alleviate suffering - represents continued caring and the latter may represent the antithesis of care. But it is a fine line. And this distinction does not ignore the fact that like terminal illness, terminal care can be burdensome.

If we physicians and nurses are conscientious, sedation for the control of symptoms will be a burden to us - certainly a burden to our daily schedule, and perhaps to our sleep, but also, it may be a burden to our emotions. Family members caring for a dying loved one who is in the "throes of dying", perhaps moaning incomprehensibly or breathing noisily, may find themselves suffering in true compassion, and in doubt, guilt and confusion - wishing for the death of a loved one who they will miss, indeed already miss, and who they wish was either well and back with them or peacefully gone. This is all made the more poignant and intense by the near universal sleep deprivation that accompanies this experience.

Is not euthanasia better? What purpose does this continued existence serve? Isn't this undignified?

One might begin to address these questions by examining dignity. To a society that values youth, beauty, energy, productivity and acquisitions to the exclusion of contrasting qualities, dying seems inherently undignified. The word dignity is derived from the Latin, dignitas meaning "honorableness, grandeur, esteem and high rank." 13 In a very real sense, society, via its members, decides what is dignified. Dignity is reflected in those styles of living, modes of behavior and aspects of life which society invests with value. Thus, the question of dignity gives rise to another: Is there any value in this waning phase of life?

Understanding of the burden of continued care in enhanced by recognizing that the experience of the care providers - by which is meant both the family and professionals who have entered into an authentic relationship with the patient and family - embodies genuine grief. The fact that this grief experience occurs prior to the patient's biologic death does not alter its identity. Our understanding is served by expanding the concept of grief to include that pain, confusion and sadness that one may feel in caring for a loved one very near death.

Grief is an important, valuable, probably essential, part of the human experience. The notion that anything painful must be ameliorated is a very modern, consumerist, trait that should be questioned. Psychologist Robert Sardello has said, "I think of grieving as the activation of the soul life."14 For psychiatrist Gerald May: "Grief is neither a disorder nor a healing process; it is a sign of health itself, a whole and natural gesture of love. Nor must we see grief as a step towards something better. No matter how much it hurts - and it may be the greatest pain in life - grief can be an end in itself, a pure expression of love."15 This accurately describes the type of care hospice personnel often witness.

The crucial difference between deep sedation and euthanasia may lie within recognition of the value represented by the very burdens of this continued life, beyond the ability to respond, and of the care it requires.

For the attending physician and for the hospice team: Most importantly, this commitment to continuing care avoids any possibility that we might recommend assisted suicide or euthanasia out of our own motives - whether those motives are our own emotional distress on losing a fond patient, our own lack of familiarity with the medical techniques or technology required for effective symptom management; or our own fatigue.

For families - the families we serve and the families to which we belong: Though much of the personhood of our loved one has been lost by this point in their dying, the continuing care for their body represents an expression of reverence for the person who we have known, cared for and loved. By participating in the continuing adjustment of narcotic analgesia, and titration of sedation and, perhaps even more so, in the turning and the washing and in the provision of oral care; family members are called to honor the person departing. I submit that this type of continuing care is a mature, balanced expression for the inner turmoil - the grief - we may feel.

For patients: Even when physical suffering is controlled there is the continued burden of dependency. Hospice clinicians speak about dependency as the loss of independence, as yet another stress for the dying person, another challenge of acceptance and surrender. And it is all that. But there is another important facet of this experience. There is an aspect of the person's conscious acceptance of dependency that is a gift. Think of the many strong, proud people for whom, in their dying, dependency with the component feelings of helplessness and embarrassment was accepted for the sake of the others, for the sake of those whom they loved.

Hospice clinicians must tell the stories of the patients they have known who worked hard at the process of dying, who died slowly, bit by bit, consciously accepting dependence in service of that growthful process - and as a gift to those who loved and wanted to care for them. It must be loudly stated that such dying is not undignified!

The burden of continued care may be the final gift that the dying can give to their loved ones.

And, lastly, for society: The conscious acceptance of these twin burdens - that of continued life beyond responsiveness and that of the care of our patients, friends and family near death - is part of living fully within the human condition. Suicide and euthanasia represents a withholding and an avoidance of these burdens. As patients, out of a desire to protect ones family or out of ones own pain, it is possible to choose suicide and, thus, withhold this burden - and the gift it embodies. To do so robs ones family of an opportunity for grieving that, while painful, is part of full and healthy living. The chance to care for the body and waning personhood of ones family members and ones patients represents a crucial, clarifying force on ourselves as persons and professionals.

A decade and a half ago Elizabeth Kubler-Ross wrote: "Children who have been exposed to these kinds of experiences - in a safe, secure, and loving environment - will then raise another generation of children who will, most likely, not even comprehend that we had to write books on death and dying and had to start special institutions for the dying patients; they will not understand why there was this overwhelming fear of death, which, for so long covered up the fear of living."16

It is time for hospice to assert these values in its advocacy of patients and in public debate. Society urgently needs to recognize that these burdens of waning life and continued care are also important gifts. Society would avoid these experiences at its peril, but might realize transformative potential in their embrace.


Bibliography

  1. Levin DN, Cleeland, CS, Dan R. Public attitudes toward cancer pain. Cancer 1985; 56:2337-2339
  2. Breitbart W. Suicide in cancer patients. Oncology 1987; 1:49-53
  3. Foley, K M. The Relationship of Pain and Symptom Management to Patient Requests for Physician-Assisted Suicide, Journal of Pain and Symptom Management. July 1991; 3(1) :289-297
  4. Webster's New Universal Unabridged Dictionary. 1983 Simon and Schuster, New York
  5. Touhey, JF. Hospice Care and passive euthanasia: Can they be Equated? Am J Hospice Care Nov/Dec 1987; 30-33
  6. Quill TE, Cassel CK, Meier DE. Care of the Hopelessly Ill: Proposed Clinical Criteria for Physician-Assisted Suicide. NEJM 1992; 327:(19):1380-1384.
  7. Greene WR, Davis WH. Titrated Intravenous Barbiturates in the Control of Symptoms in Patients with Terminal Cancer. So Med J 1991 84:(3):332-337
  8. Truogg RD, Berde CB, Mitchell C, Grier HE. Barbiturates in the Care of the Terminally Ill, NEJM 1992 327(23):1678-1681
  9. Byock, IR. Final Exit: A wake-up call to hospice. The National Hospice Journal 1991 (7) 4 51-66 , Haworth Press, Binghamton, N.Y.
  10. Saunders, Cicely, On Dying Well, The Cambridge Review, February 27, 1984
  11. Brody, H. Assisted Death - A Compassionate Response To A Medical Failure. NEJM 1992; 327:(19):1384-1388.
  12. Billings, AJ. Drug-Induced Sedation in the Management of Terminal Distress. Hospice Update 3(1):1 March 1992
  13. Vanderpool, Harold Y., "The Ethics of Terminal Care.", JAMA, Vol 238, No.9 (Feb. 27, 1978), 850-852
  14. Sardello, Robert - personal communication 9/30/92
  15. May, Gerald, "For They Shall Be Comforted, Shalem News, Vol xvi, number 2, June 1992
  16. Kubler- Ross, E, To Live Until We Say Goodbye, Prentice-Hall, Inc. 1978 pg 146

Consciously Walking the Fine Line:
Thoughts on a Hospice Response to Assisted Suicide and Euthanasia
Journal of Palliative Care, Vol.9, No.3, pp.25-28, 1993.
Ira R. Byock, M.D.


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