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Caring for Patients at the End of LifeFacing an Uncertain Future Together$

Timothy Quill

Print publication date: 2001

Print ISBN-13: 9780195139402

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780195139402.001.0001

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“Doctor, I Want to Die! Will You Help Me?”

“Doctor, I Want to Die! Will You Help Me?”

Chapter:
(p.132) 9 “Doctor, I Want to Die! Will You Help Me?”
Source:
Caring for Patients at the End of Life
Author(s):

Timothy E. Quill (Contributor Webpage)

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780195139402.003.0010

Abstract and Keywords

This chapter examines the problems of doctors in responding to patients' requests for physician-assisted death. It explores the potential meaning of such requests through a series of case vignettes and identifies acceptable responses that are tailored to the needs of the individual patient. The chapter discusses the clinical criteria that have been proposed as a guide for physicians who find assisted suicide a morally acceptable last-resort option for terminally ill patients with relentlessly progressive medical illnesses.

Keywords:   physician-assisted death, physicians, assisted suicide, terminally ill, terminal care

It had been 18 months since Mr. K., a 67 year-old retired man, was diagnosed with inoperable lung cancer. An arduouscourseof chemotherapy helped him experience a relatively good year where he was able to remain independent, baby-sitting regularly for his two grandchildren, the main joys of his life.

Recent tests revealed new multiple bony metastases. An additional round of chemotherapy and radiation provided little relief. Over the ensuing three months, Mr. K.'s pain and fatigue became unrelenting. He was no longer able to tolerate, much less care for, his grandchildren. His wife of 45 years devoted herself to his care and support. Nevertheless, his days felt empty and his nights were dominated by despair about the future. Though he was treated with modern pain-control methods, his severe bone pain required daily choices between pain and sedation. Death was becoming less frightening than life itself.

A particularly severe episode of thigh pain led to a roentgenogram that showed circumferential destruction of his femur. Attempting to preserve his ability to walk, Mr. K. consented to the placement of a metal plate. Unfortunately, his bone was too brittle to support the plate. He would never walk again.

One evening in the hospital after his wife had just left, his physician sat down to talk to him. The pain was “about the same,” and the new sleep (p.133) medication “helped a little.” He seemed quiet and distracted; When asked what was on his mind, Mr. K. looked directly at his doctor and said, “Doctor, I want to die. Will you help me?”

Such requests are dreaded by physicians. There is a desperate directness that makes sidestepping this question very difficult, if not impossible. By focusing mainly on the technology of care, physicians frequently avoid hearing about the inner turmoil faced by our terminally ill patients—what is happening to the person who has the disease. Yet sometimes requests for help in dying come from patients with strong wills, or out of desperation when there is nowhere else to turn. Though palliative care provides a humane alternative to traditional medical care of the dying,1,2,3,4,5,6,7 it does not always provide guidance for how to approach those rare patients who continue to suffer terribly in spite of our best efforts. This chapter explores what dying patients might be experiencing when they make such requests and offers possible responses. Such discussions are by no means easy for clinicians, who may become exposed to forms and depths of suffering with which they are unfamiliar and to which they do not know how to respond. They may also fear being asked to violate their own moral standards or having to refuse someone in desperate need. Open exploration of requests for physician-assisted death can be fundamental to the humane care of a dying person; no matter how terrifying and unresolvable their suffering appears, at least they are no longer alone. Exploration also frequently opens up avenues of “help” that were not anticipated and that do not involve active assistance in dying.

Doctor, I want to die” and “Will you help me?” are a statement and a query that must each be independently understood and explored. The physician's initial response, rather than a “yes” or “no” based on assumptions about the patient's intent and meaning, might be something like: “Of course I will try to help you, but first I need to understand your wish and your suffering, and then we can explore how I can help.” Rather than shying away from the depths of suffering, follow-up questions might include “What is the worst part?” or “What is your biggest fear?

The Wish to Die

Transient yearnings for death as an escape from suffering are common among patients with incurable, relentlessly progressive medical Illnesses.8,9,10 Such wishes are not necessarily signs of a psychiatric disorder, nor are they likely to be fully considered requests for a physician-assisted death. Let us explore some of their potential meanings through a series of case vignettes.

(p.134) Tired of Acute Medical Treatment

A 55 year-old woman with very aggressive breast cancer found her tumor to be repeatedly recurring over six months. The latest instance signaled another failure of chemotherapy. As her doctor proposed a new round of experimental therapy, she said, “I wish I were dead.” By exploring her statement, her physician learned that the patient felt strongly that she was not going to get better. She could not fathom the prospect of more chemotherapy with its side effects, and she wanted to spend what time she had left at home. He also learned that she did not want to die at that moment. A discussion about changing the goals of treatment from cure to comfort ensued, and a treatment plan was developed that exchanged chemotherapy for symptom-relieving treatments. The patient was relieved by this change in focus, and she was able to spend her last month at home with her family in a hospice program.

Palliative care can offer a caring and humane approach to the last phase of life by focusing energy on relieving the patients' suffering with the same intensity and creativity that traditional medical care usually devotes to treating underlying disease. When comprehensively applied, in a hospice program or any other setting, palliative care can help ensure a dignified, individualized death for most patients.

Unrecognized or Under-Treated Physical Symptoms

A stoic 85 year-old farmer with widely metastatic prostate cancer was cared for in his home with the help of a hospice program. Everyone marveled at his dry wit and engaging nature as he courageously faced death. He was taking very little medication and always said he was “fine.” Everyone loved to visit with him, and his stories about life on the farm were legendary. As he became more withdrawn and caustic, people became concerned. When he said he wished he were dead, there was a panic. All the guns on the farm were hidden and plans for a psychiatric hospitalization were entertained. When his “wish for death” was fully explored, it turned out that he was living with excruciating pain, but not telling anyone because he feared becoming “addicted” to narcotics. After a long discussion about pain-relieving principles, the patient agreed to try a regular, around-the-clock dosage of long-acting opioid pain reliever with “as-needed” doses in between. In a short time, with his pain under better control, he again began to engage his family and visitors, and he no longer wanted to die. For the remainder of his life, physical symptoms that developed were addressed in a timely way, and he died a peaceful death surrounded by his family.

(p.135) Though not all physical symptoms can be completely relieved by the creative application of palliative care, most can at least be made tolerable. New palliative techniques have been developed that can ameliorate most types of physical pain,6,11,12,13,14 provided they are applied without unnecessary restraint. One must be sure that unrelieved symptoms are thoroughly explored, and that they are not a result of ignorance about available medical treatments, or of exaggerated fears about addiction or indirectly hastening death. Experts who can provide formal or informal consultation in pain control and in palliative care are accessible in most major cities, and extensive literature is available.

Emergent Psychosocial Problems

A 70 year-old retired woman with chronic leukemia that had become acute and had not responded to treatment was in a home hospice program. She was prepared to die, and all of her physicians felt that she would “not last more than a few weeks.” She had lived alone in the past, but her daughter took a leave of absence from work to care for her mother for her last few days or weeks. Ironically (though not necessarily surprisingly), the woman stabilized at home. Two months later, outwardly comfortable and symptom-free under the supportive watch of her daughter, she began to focus on wanting to die. When asked to explain, she initially discussed her fatigue and her lack of a meaningful future. She then confided that she hated being a burden on her daughter. Her daughter had children who needed more of her attention and a job that was beginning to cause serious strain. The daughter had done her best to protect her mother from these problems, but she became aware of them anyway. A family meeting at which the problems were openly discussed resulted in a compromise whereby the mother was admitted to a nursing facility where comfort care was offered, and the daughter visited every other weekend. Though the mother would have liked to stay at home, she accepted this solution and lived for two more months before dying at the nursing facility with her daughter at her side.

Requests for help in dying can come about because of unrecognized or evolving psychosocial problems, IS Sometimes these problems can be alleviated by having a family meeting, by arranging a temporary “respite” admission to a health care facility, or by consulting a social worker for advice about finances and available services. Other psychosocial problems may be more intractable for example, in a family that was not functioning well prior to the patient's illness or when a dominating family member tries to influence care in a direction that appears contrary to the patient's wishes or best interest. Many patients have no family or financial resources. There are a growing number of volunteer-staffed, privately funded two-bed residential hospice units in most (p.136) large communities that provide excellent palliative care for many who would otherwise fall through the cracks; however, the need for such units far exceeds their availability. Supplemental hospice services are also available in nursing homes, so excellent palliative care is available for many dying persons who cannot stay in their own home. Nevertheless, inadequate access to health care in general in the United States means that some dying patients who need the most help and support are forced to fend for themselves, and often die alone. The U.S. health care reimbursement system is primarily geared toward acute medical care, not terminal care, so a physician may be the only potential advocate and support that a dying patient has.

Spiritual Crisis

A 42 year-old woman who was living at home with advanced acquired immunodeficiency syndrome (AIDS) began saying that she wished she were dead. (The same patient is described in Chapter 6.) She was a fundamentalist Christian who at the time of her diagnosis wondered, “Why would God do this to me?” She eventually found meaning in the possibility that God was testing her strength, and that this was her “cross to bear.” Although she continued to regularly participate in church activities for five years after her initial diagnosis, she never confided in her minister or church friends about her diagnosis. Her statements expressing her wish to be dead frightened her family, and they insisted she visit her doctor. When asked to elaborate on her wish, she raged against her church, her preacher, and God. She stated that she found her disease humiliating and did not want to be seen at the end stages of AIDS, when everyone would know. She felt more and more alone with these feelings, until she could no longer contain them. Once her feelings were acknowledged and understood, it was clear that they defied simple solution. She was legitimately angry, but not depressed. She had no real interest in taking her own life. She was eventually able to find a fundamentalist minister from a different church who had. an open mind about AIDS and who helped her find spiritual consolation.

The importance of the physician's role as witness and support cannot be overemphasized. Sharing feelings of spiritual betrayal and uncertainty with an empathetic listener can be the first step toward healing. At least isolation is taken out of the doubt and despair. The physician must listen and try to fully understand the problem before making any attempt to help the patient achieve spiritual resolution. In many communities, medically experienced clergy are available who can explore spiritual issues with dying patients of many faiths so that isolation can be further lessened and the potential for reconnection with one's religious roots can be enhanced.

(p.137) Clinical Depression

A 60 year-old man with a recently diagnosed recurrence of non-Hodgkin's lymphoma became preoccupied with wanting to die. Though he had a long remission after his first course of chemotherapy, he had recently gone through a divorce and felt he could not face more treatment. It became evident that he was preoccupied with thoughts of his father, who had gone through an agonizing death filled with severe pain and agitation. He had a strong premonition that the same thing would happen to him, and he was not sleeping because of this worry. He appeared withdrawn, and he was not able to fully understand that odds suggested treatment directed at his lymphoma would be successful. He also had trouble comprehending the likelihood that palliative care could prevent a death like his father's, despite his doctor's promise to work with him to find acceptable solutions. Although he was thinking seriously of suicide, he did not have a plan for ending his life, and therefore he was treated intensively as an outpatient by his internist and a psychotherapist. He accepted the idea that he was depressed, but he also wanted assurances that all possibilities for easing his death could be explored after a legitimate trial of treatment for depression. He responded well to a combination of psychotherapy and medication, and eventually he underwent acute treatment directed at his lymphoma that unfortunately did not work. He then requested hospice care and seemed comfortable and engaged in his last months. As death approached, his symptoms remained relatively well controlled, and he was not overtly depressed. He died alone while his family was out of the house. Since his recently filled prescription bottles were all empty, it may have been a drug overdose (presumably to avoid an end like his father's),

Whenever a severely ill person begins to talk about wanting to die, and begins to seriously consider taking his or her own life, the question of clinical depression appropriately arises.8,l6,17,18 This can be a complex and delicate determination, because most patients who are near death with unrelenting suffering are very sad, if not clinically depressed. Many of the symptoms of terminal illness are also associated with depression (fatigue, weight loss, sleep disturbance, preoccupation with death), so usual symptom-based depression scales tend to over-report the incidence of depression in the terminally ill. Studies using modified depression scales that avoid this potential for over-reporting still show a higher incidence of depression in the terminally ill than that in nonterminal controls (13% measured by modified scales versus 26.1% measured by normal criteria),17,19 yet there is a growing clinical literature suggesting that some of these suicides are rational.2,20,21,22,23,24

(p.138) Two fundamental questions must be answered before suicide can be considered rational in such settings: (1) Is the patient able to fully understand his or her disease, prognosis, and treatment alternatives (i.e., is the decision rational)? and (2) Is the patient's depression reversible, given the limitations imposed by his or her illness, to an extent that would substantially alter the patient's situation? It is vital not to over-normalize (e.g., “anyone would be depressed under such circumstances”) or to reflexively define a request for death as a sign of psychopathology. Each patient's dilemma must be fully explored individually. Consultation with an experienced psychiatrist can be helpful when there is doubt about a diagnosis or its implications. For a potentially reversible depression, most experts recommend at least a trial of amphetamines25,26,27 0r other antidepressant medications if the patient has the time and strength for such treatment.

Unrelenting, Intolerable Suffering

Mr. K., the retired man with widely metastatic lung cancer described in the introduction of this chapter, felt that his life had become a living hell with no acceptable options. His doctors agreed that all effective medical options to treat his cancer had been exhausted. Physical activity and pride in his body had always been a central part of who he was. Now, with a pathologic fracture in his femur that could not be repaired, he would not even be able to walk independently. He also had to make daily trade-offs between pain, sedation, and other side effects. At the insistence of his doctor, he met with a psychiatrist several times who found his judgment to be fully rational. Death did not appear imminent, and his condition could only get worse. Even in a hospice program, with experts doing their best to help address his medical, social, personal, and spiritual concerns, he felt trapped, yearning for death. He saw his life savings from 45 years of work rapidly depleting. His family offered to supplement his finances and to provide additional personal support. They wanted him to live, but having witnessed his last months of progressive disability, loss, and pain, with no relief in sight other than death, they eventually decided to respect his wishes and gradually started to advocate on his behalf: “We appreciate your efforts to keep him comfortable, but for him this is not comfortable and it is not living. Will you help him?”

Physicians who have made a commitment to shepherd their patients through the dying process find themselves in a predicament. They can acknowledge that standard palliative care is sometimes far less than ideal but it is the best that they can offer. Alternatively, they can search with the patient and family for assistance in dying that is agreeable to all parties. Some of these methods are (p.139) explored in detail in Chapter 12. Compassionate physicians differ widely in their approach to this dilemma,21,22,24,28,29,30,31, though most support openly discussing death with a patient who raises the issue and an extensive search for alternative approaches.

Clinical criteria have been proposed to guide physicians who find assisted suicide a morally acceptable last-resort option:24,32,33

  1. 1. The patient must, of his or her own free will and at his or her own initiative, clearly and repeatedly request to die rather than continue suffering.

  2. 2. The patient's judgment must not be distorted.

  3. 3. The patient must have a condition that is incurable and associated with severe, unrelenting, intolerable suffering.

  4. 4. The physician must ensure that the patient's suffering and the request are not the result of inadequate palliative care.

  5. 5. Any of the interventions described in Chapter 12 that can end in a patient's death should be carried out only in the context of a meaningful doctor-patient relationship.

  6. 6. Consultation with another physician who is experienced in end-of-life care is required.

  7. 7. Clear documentation to support each condition above should be required (physician-assisted suicide, because of its ambiguous legal status outside of Oregon, is the exception; nevertheless, all conditions should be carefully evaluated and met).

It is not the purpose of this chapter to review the public policy implications of society's formally accepting these criteria or of maintaining current prohibitions. Instead, it is to encourage and guide clinicians on both sides of the issue to openly explore the possible meanings of a patient's request for help in dying and to search as widely as possible for acceptable responses that are tailored to the needs of the individual patient

The Request for Help in Dying

All dying patients need more than prescriptions for opioids and referrals to hospice programs from their physicians, and those who express a wish to die certainly need more than a prescription for barbiturates. Instead, such patients need a personal guide and counselor throughout the dying process-someone who will unflinchingly help them face both the medical and the personal aspects of dying, whether they go smoothly or take the physician into unfamiliar, untested ground.34 Dying patients do not have the luxury of (p.140) choosing not to undertake the journey, or of separating their person from their disease. Physicians' commitment not to abandon their patients is of paramount importance.35

Fears about dying badly usually first emerge when someone is diagnosed with a life-threatening illness, or when a patient's illness has gone through a major exacerbation and the prognosis is uncertain. Under these circumstances, patients and their family members begin to consider what their future might look like. As part of that inquiry, they may imagine the “worst-case scenario.” Patients may not have to look very far if they have witnessed a bad death in their own family or with close friends. In addition to exploring a patient's hopes for the future, a clinician should also inquire about the patient's fears. After carefully listening to the patient's response, the clinician should further explore these fears, if possible using the patient's own language, so that the patient feels heard and understood.

DOCTOR:

  • As you look to the future, what are your biggest fears?
  • PATIENT:

  • I am not afraid of pain, but I am afraid of dying out of my mind.
  • DOCTOR:

  • Tell me more about what you mean by “dying out of my mind.”
  • PATIENT:

  • I saw my father die that way, and it was awful. He was such a refined man, and to see him die screaming, hallucinating, and completely out of control was excruciating!
  • DOCTOR:

  • That sounds like it must have been terrible, both for him and the rest of the family.
  • PATIENT:

  • We all felt horrible, like we really let him down.
  • Only after fully exploring the patient's experience, including its associated emotions, can the clinician begin to be genuinely reassuring. Table 9–1 shows some Simple techniques for responding to a patient's emotions.36

    TABLE 9–1. Levels of Responding to Emotion

    RESPONSE

    ILLUSTRATIVE QUESTION

    • Acknowledge

    • “I can see you find this distressing.”

    • “You seem very sad today.”

    • Legitimize

    • “Anyone in your shoes would be upset.”

    • “It seems only natural to be angry about the way things turned out.”

    • Explore

    • “What is the most distressing part?”

    • “Tett me more about what is making you angry (sad, nervous, upset).”

    • Empathize

    • “That sounds terrifying.”

    • “I imagine I would feel overwhelmed too.”

    (p.141) If a patient's main fear is of pain, particularly if prior physicians have been reluctant to prescribe adequate amounts of opioid analgesics, clinicians should respond in a way that will relieve the patient's concerns. (“We now can adequately relieve almost all kinds of pain. I have no reseroations about prescribing adequate amounts of opioids. If you have a lot of pain in the future, we will work together until you tell me your pain is sufficiently relieved.”) A patient who has witnessed other symptoms, such as severe shortness of breath or an agitated delirium, may be more difficult to reassure. Under these circumstances, the patient may need some ideas about how the physician approaches both the specific problem in question and a more open-ended commitment.

    DOCTOR:

  • Most of the time, the difficulties associated with dying can be mode quite tolerable by using well-described techniques developed in hospice and palliative care, but managing severe agitation and confusion like what happened with your father can be difficult. When all else fails in such circumstances, we now heavily sedate such patients so they can escape from this kind of agony. I can promise that I and the rest of our team will do our best to work with you to face whatever has to be faced.
  • PATIENT:

  • I wish that kind of an escape could have been available to my father.
  • DOCTOR:

  • I wish it could have been too. We have come a long way in terms of our abilities to address severe forms of suffering.
  • A commitment to see the dying process through is fundamental,35 and needs to be articulated even if the patient does not bring it up. Whether patients choose to engage in an aggressive fight for life using intensive medical technology, or transition to an approach that emphasizes palliation, or anything in between, they need a committed medical partner.

    DOCTOR:

  • I want to let you know that we are in this together. No matter what happens, I will work with you to find the best approach possible.
  • Some patients ask pointed and difficult questions about the nature and extent of their physician's future commitment, including the possibility of actively helping the patient to die. Rather than provide a quick answer based on personal values and experience, the physician maybe well-advised to probe further by asking what kind of “help” the patient is asking about. (When you sayhelp me to die,’ I am not exactly sure what kind ofhelpyou are talking about.”) Many patients simply ask for assurance that they will receive all the pain medications they may need, whereas others look for an open-ended commitment from the physician to face the unknown with them. The clinician should base his or her response with regard to methods on exactly what is being requested by the patient.

    If the patient asks about medication that could be used for a physicianassisted (p.142) suicide, the clinician should discuss this possibility in the proper context, as long as he or she is willing to provide this option.

    DOCTOR:

  • I know how important the possibility of an escape is to you as you contemplate your future. Because palliative care is so effective, my experience is that physician-assisted suicide is rarely needed. We will use all means possible to alleviate your pain and suffering, but if those measures prove ineffective or unacceptable, I will explore this possibility with you as a very last resort.
  • A clinician who cannot provide this option because of personal, moral, or legal constraints should say so unhesitatingly, but also reassure the patient that this need not affect the nature and depth of their commitment. This response might also include an exploration of the last-resort options the clinician can provide under the circumstances feared by the patient:

    DOCTOR:

  • I know that the possibility of an escape is important to you, but I personally cannot provide medication that could be used in an overdose. I believe that palliative care is very effective, and that we can address most kinds of suffering. However, if your situation becomes intolerable to you, I will work with you to try to find an acceptable answer. If all else fails, I would even be willing to provide heavy sedation, so that you would be unaware of your suffering.
  • Most palliative care clinicians find that such open discussion, a commitment to see the process through, and a willingness to seek creative solutions to difficult forms of terminal suffering are more fundamental to a patient's well-being than a simple willingness to prescribe or not prescribe barbiturates.

    Armed with such an open-ended commitment from their physician, including a promise to address their worst fears if they materialize, most patients feel more secure and free to bring peaceful resolution to their lives. They are in a position very different from that of patients and families who do not have a medical partner they can count on under any circumstances. Knowledge that there could be an escape is important to many, but in actuality, few will ever need it.

    Requests for assistance in dying rarely evolve into fully considered requests for physician-assisted suicide. As illustrated in the case vignettes, a thorough exploration of the patient's experience and the immediate reason for the request often yield avenues of “help” that are acceptable to patients, families, physicians, and ethicists.

    The clinical summaries in this chapter have been over-Simplified to illustrate particular issues. More commonly, multiple issues and patient motives exist simultaneously, perhaps yielding several opportunities for intervention. The first step is to understand why the patient's suffering has become so unbearable right now (“First I need to learn more about why your suffering has become so unacceptable right now.” ‘What is the worst part?’ “Why is it worse now than last week or last month?”).

    (p.143)

    TABLE 9–2. Sources of Reversible Suffering That May Lead to Requests for a Physician-Assisted Death

    DIMENSION OF SUFFERING

    QUESTION TO INITIATE EXPLORATION

    • Tired of acute medical treatment

    • “I can see that the treatment is not working very well, and that it has been very hard on you. Perhaps it is time to focus our energy more exclusively on your quality of life and comfort. Have you heard about hospice programs?”

    • Unrecognized or under-treated physical symptoms

    • “Sometimes people are having pain or other uncomfortable symptoms that they don't talk about. These symptoms may be very responsive to treatment. Are you having any such problems that we have not addressed?”

    • Emergent psychosocial problems

    • “Sometimes even the most caring families get tired out by the challenges of caregiving, especially with the demands of modern life. Are you and your family having any difficulties? Are there issues with any particular family members that are worrying you? How about financial problems?”

    • Spiritual crisis

    • “Sometimes people who are as sick as you are have a crisis of faith-like wondering how God could do this to you. Have you had any similar concerns? Are there any spiritual or religious matters that have been left unaddressed?”

    • Clinical depression (or other mental disorder)

    • “Are you depressed?”(46) “Do you have feelings of hopelessness or despair?Are there any things that you can still enjoy? How do you see the future?”

    Potential dimensions of suffering that should be explored and evaluated are presented in Table 9–2, along with sample questions to begin an inquiry.37.38 Usually these interviews include close family members who may have insight into the patient's clinical situation and ideas about alternative approaches. Of course, the patient is the ultimate arbiter of who gets included as “family” in these conversations.

    What Do Dying Persons Want Most From Their Physicians?

    Most patients do not want to die, but if they must, they would like to do it while maintaining their physical and personal integrity.39 When faced with a patient expressing a wish for death and a request for help, physicians (and others) should consider the following:

    1. (p.144) 1. Listen and Learn from the Patient before Responding

      Learning as much as possible about the patient's unique suffering and about exactly what is being requested is a vital first step. Physicians tend to be action oriented, yet these problems only infrequently yield simple solutions. This is not to say they are insoluble, but the patient is the initial guide to defining the problem and the range of acceptable interventions.

    2. 2. Be Compassionate, Caring. and Creative

      Palliative care is a far cry from "not doing anything." It is completely analogous to intensive medical care, but the care is directed toward a person and his or her suffering, not a disease. Dying patients need our commitment to creatively problem-solve, and our support no matter where their illness may go. Rules and methods are not simple when applied to real persons, but the satisfaction derived from helping someone find his or her own path to a dignified death can be immeasurable.

    3. 3. Promise to Be There Until the End

      Many people have personally witnessed or in some way encountered "bad deaths," though this might mean different things to different people. Patients need our assurance that if things get undignified or intolerable we will not abandon them and we will continue to work with them to find acceptable solutions. Usually those solutions do not involve directly helping a patient to die, but they often involve aggressive use of syrnptom-relieving measures that might indirectly hasten death.3,40 We should be able to reassure all of our patients that they will not die racked by physical pain, for it is now accepted practice to give increasing amounts of analgesic medicine until the pain is relieved, even if it inadvertently shortens a life. Many patients find this promise reassuring, for it both alleviates their fear of pain and provides proof of the physician's willingness to find creative, aggressive solutions.

    4. 4. If Asked, Be Honest About Your Openness to the Possibility (or Impossibility) of Physician-Assisted Suicide

      Many patients who want to explore their physicians' willingness to provide a potentially lethal prescription fear being out of control, physically dependent, or mentally incapacitated, rather than physical pain alone.41,42,43,44 For many, the possibility of a controlled death if their pain or situation becomes intolerable is often more important than the reality. Those who secretly hold lethal prescriptions or who have a physician who will entertain the possibility of such treatment feel a sense of control knowing that, if things become intolerable, they have a potential escape. Other patients are assured simply by knowing that we can acknowledge the problem, talk about death, and actively search for acceptable approaches, even if we cannot directly help them to die. Chapter 12 explores important alternatives to physician-assisted suicide for all patients and physicians.

    5. (p.145) 5. Approach Intolerable End-of Life Suffering with an Open Heart and an Open Mind

      Though acceptable solutions can almost always be found through the skillful application of state-of-the-art palliative care principles, this is not a time for denial of the problem or for superficial solutions. If there are no good alternatives, what should the patient do? There is often a moment of truth for health care providers and families faced with a patient who has no acceptable options. Physicians must not turn their backs, but instead must continue to problem-solve, to be present, and to help their patients find dignity in death.

    6. 6. Do Not Forget Your Own Support

      Working with dying patients can be both enriching and emotionally draining. It forces clinicians to face their own mortality, abilities, and limitations. It is vital to have a place to openly share grief and uncertainties, as well as to take joy in small vlctories.45 For us to deepen our understanding of the human condition and to help humanize the dying process for our patients and ourselves, we must learn to give voice to and share our experience of working closely with dying patients.

    The patients with whom we engage at this level often become indelibly imprinted on our identities as medical professionals. Much like the death of a family member, the process that they go through and our willingness and ability to be there and to be helpful are often replayed and rethought. The intensity of these relationships and our ability to make a difference are often without parallel. This road is eventually traveled by all of us. However, the map is poorly described and the journey unpredictable, frequently making for an adventure with extraordinary richness but unclear boundaries.

    • Note: Many of the ideas and cases presented in this chapter were initially presented in an article I wrote titled “Doctor, I want to die. Will you help me?” published in the Journal of the American Medical Association 1993; 270:870–873.

    Notes:

    (1) Wanzer SH, Adelstein SJ, Cranford RE, Federman DD, Hook ED, Moertel CG, et al. The physician's responsibility toward hopelessly ill patients. N Engl J Med 1984; 310:955–959.

    (2) Wanzer SH, Federman DD, Adelstein SJ, Cassel CK, Cassem EH, Cranford RE, et al. The physicians responsibility toward hopelessly ill patients: A second look. N Engl J Med 1989; 320:844–849.

    (3) American Medical Association's Council on Ethical and Judicial Affairs. Decisions near the end of life.JAMA 1992; 276:2229–2233.

    (p.146) (4) Rhymes J. Hospice care in America. JAMA 1990; 264:369–372.

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