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Psychosomatics 41:195-203, June 2000
© 2000 The Academy of Psychosomatic Medicine

Special Article

Psychiatric Evaluation of Death-Hastening Requests

Lessons From Dialysis Discontinuation

Lewis M. Cohen, M.D., Maurice D. Steinberg, M.D., Kevin C. Hails, M.D., Steven K. Dobscha, M.D., and Steven V. Fischel, M.D., Ph.D.

Received July 12, 1999; revised November 9, 1999; accepted July 12, 1999. From the Baystate Medical Center, Department of Psychiatry, Springfield, MA; the Long Island Jewish Medical Center, NY; the Albert Einstein Medical Center, PA; and the Portland VA Medical Center, OR. Address reprint requests to Dr. Cohen, Baystate Medical Center, Department of Psychiatry, Springfield, MA 01199.


  ABSTRACT

 
TOP
 ABSTRACT
INTRODUCTION
 BACKGROUND
 PSYCHIATRIC EVALUATION OF DEATH...
 CONCLUSION
 REFERENCES
 
The authors aim to facilitate the psychiatric evaluation of death-hastening decisions, such as cessation of life-support treatment or physician-assisted suicide, by deriving principles for evaluating patients from a literature review and a recently completed prospective study on dialysis discontinuation conducted by consultation psychiatrists. Factors are delineated and suggestions are provided for the evaluation of requests to accelerate dying. Included are the authors' method for determining major depression in the context of terminal illness and their "vector analysis" in assessing patient requests to stop dialysis. As our society heatedly examines the care provided to the terminally ill, psychiatry also needs to reconsider whether actions that foreshorten life can be normative and permissible. Familiarity with competency, psychiatric diagnosis, and ease in communication and negotiation between patient, family, and staff are resources that psychiatrists can bring to these complicated assessments. Challenging areas include diagnosing depression, establishing the adequacy of palliative care, and appreciating issues related to personality features, family dynamics, and ethnic differences.

Key Words: Death and Dying • Dialysis

  INTRODUCTION

 
TOP
 ABSTRACT
 INTRODUCTION
BACKGROUND
 PSYCHIATRIC EVALUATION OF DEATH...
 CONCLUSION
 REFERENCES
 
Spurred by the recognition that for many individual patients there is an appropriate time to shift from curative treatment to a palliative approach and that dying is an inevitable and sometimes transcendental part of life, end-of-life care has become a focus of considerable medical interest.1 Psychiatrists have traditionally labored to prevent people from prematurely shortening their lives through suicide, but the discipline is now attempting to broaden its understanding of decisions that accelerate dying.2 In particular, both the increasing number of deaths following withholding or withdrawing life-support treatment3 and the legalization of physician-assisted suicide in Oregon4 pose challenges to psychiatry.5–7 Although this article focuses on these two practices, we see these practices as part of a broad spectrum of medical practices, including "do not resuscitate" orders, determinations to restrict treatment to outpatient care for certain elderly or demented patients, terminal sedation during hospitalizations, and referrals to hospice. Physician-assisted suicide is an emotional flash-point for many people, and this article is written with the hope that its inclusion will not draw attention away from the need for psychiatrists to selectively participate in helping patients, family, and staff to grapple with any and all of these complex decisions.8 Informed by a review of the literature and a 10-year-long series of psychiatric and bioethical studies of dialysis discontinuation,9 this article outlines some of the relevant and complex factors that need to be considered in conducting these evaluations.


  BACKGROUND

 
TOP
 ABSTRACT
 INTRODUCTION
 BACKGROUND
PSYCHIATRIC EVALUATION OF DEATH...
 CONCLUSION
 REFERENCES
 
Stopping Life-Support
More than 25 years ago, McKegney and Lange10 wrote in the psychiatric literature that the terminally ill may be entirely reasonable in their desire for an early death as a means to end suffering. However, it is only in the past decade that health care professionals have come to recognize that such decisions can be reached through rational thought processes and do not necessarily reflect pathological depression or classic suicidal ideation.11,12 Cohen has described a conceptual framework that distinguishes different types of suicide and acts that expedite death.13 In addition to ordinary, clinical suicide that is familiar to psychiatrists, there are other distinct but related behaviors, such as altruistic suicide (e.g., the soldier who throws himself on a grenade)14 and preemptive suicide. The latter occurs in the context of terminal illness, and Carroll maintains that it includes both cessation of life-support treatment and physician-assisted suicide.15

In the United States, a series of prominent court decisions have consistently supported the right of patients and families to terminate life-support treatment. Organized medicine has come to view cessation of these treatments as a natural derivative of the bioethical principle of patient autonomy.16,17 Withdrawal or withholding of life-support occurs in almost half the deaths in American intensive care units.18 Surveys find that approximately 90% of nephrologists approve of the practice of dialysis discontinuation and offer it as an option to patients.19 Nationally, one in five patients with end-stage renal disease are withdrawn from dialysis prior to their death.20

In our experience, most patients who stop dialysis do not consider this to be ordinary suicide,9 and several of our Catholic subjects could not have arrived at their decision until after receiving reassurance that this course of action is not viewed by the church as suicide. Although suicide is prohibited by established religions in this country, most Western religions, including the major groupings within Christianity, Reform Judaism, and secular humanism, accept the right of terminally ill individuals to stop life-support treatment and thereby hasten death.21,22 The Catholic church has explicitly stated in a Papal encyclical and a missive from the National Conference of Catholic Bishops that this decision is not subject to the prohibition associated with suicide by the physically healthy.23

However, when encountered in clinical settings these situations can be extraordinarily complex, and some terminally ill people who request that treatment be withheld or withdrawn are clearly influenced by depression and other psychosocial factors.24 When encountered, we have not hesitated to label this behavior as pathological and have instituted treatment measures ranging from voluntary outpatient psychotropic medication trials to involuntary commitment at psychiatric facilities.

On the other hand, the great majority of patients referred to us for requests to terminate life-support have been neither depressed nor clinically suicidal. We are in the process of analyzing our most recent prospective study of dialysis discontinuation, but there appears to be no significant association between patient and families' perception of the presence of depression, past history of suicidal acts, family history of psychiatric disorders, and other factors that might suggest the influence of psychopathology. The decisions to hasten death were generally prompted by frustration and dissatisfaction with a deteriorating course and the wish for a dignified end to life. Many of these patients had independent personality traits and strong needs for self-control and self-determination.

The quality of most of the deaths after dialysis termination that we have studied was rated as having been "good" or "very good." They were consistent with Weisman's aphorism as being "the type of death one would choose if there were a choice"25 and were brief in duration, purposeful, relatively devoid of suffering, consistent with ego ideals, and allowed for resolution and reconciliation.26 The deaths were quite different from those caused by ordinary suicide, which invariably left loved ones and health professionals with a murderous residue of anguish and guilt. Families and staff were supportive because the decisions were consistent with the attitudes and values of the individuals.

Physician-Assisted Suicide
The opinions expressed in this article concerning physician-assisted suicide should not be construed as being based on clinical experience. The authors would maintain, however, that their experience with cessation of life-support has relevance for clinicians who are now dealing with this considerably more controversial form of preemptive suicide.27 In 1996, two U.S. Circuit Courts of Appeals temporarily blurred the legal distinction between cessation of life-support and physician-assisted suicide.28 The U.S. Supreme Court's opinion concerning these decisions has allowed the issue to be resolved and legislated by each state individually.29 Subsequently, for the second time in 3 years, Oregon approved a referendum in favor of physician-assisted suicide, and it has now become an option for the competent, terminally ill in that state.30,31 In the most recent turn of events, Congress (with the support of the American Medical Association) is challenging the practice by passing a bill to make it a federal crime for physicians to prescribe drugs to help terminally ill patients end their lives.32

Well-publicized cases of physician-assisted suicide have served to highlight the conflict between private preferences and institutional policies.33 Although most major health care organizations oppose legalization of physician-assisted suicide,34–37 physician surveys indicate that many practitioners are willing or have already participated in select cases.38 Although the American Psychiatric Association had joined with the American Medical Association in filing an amicus curiae brief in the Supreme Court favoring bans,39,40 the APA has never taken an official position on physician-assisted suicide.41 In a survey of 418 psychiatrists from Oregon,42 68% believed that under some circumstances a physician should be permitted to write a prescription for medication whose sole purpose would be to allow the patient to end his or her life.

The psychiatric literature on physician-assisted suicide is growing, with a few authors identifying their opposition,43–47 a few suggesting its value as an option of last resort,48,49 and almost everyone agreeing on the need for empirical research data to lift the subject from its philosophical and polemical status. Psychiatrists have identified the wide-ranging psychopathology, Axis I syndromes, emotional states, and psychodynamic or interpersonal issues that can underlie these requests. However, there has been little exploration and explication of the psychological mechanisms by which such choices occur in patients without overt psychopathology or as expressions of stable character structure, enduring values, or positive attitudes toward the naturalness of death. Freud's honest relationship with his own personal physician and his death after active voluntary euthanasia serve to underscore these issues.50 In summary, while cessation of life-support has now become accepted and widespread in medical practice, physician-assisted suicide is ethically more controversial but is also condoned by a substantial segment of doctors and society.51–53


  PSYCHIATRIC EVALUATION OF DEATH-HASTENING REQUESTS

 
TOP
 ABSTRACT
 INTRODUCTION
 BACKGROUND
 PSYCHIATRIC EVALUATION OF DEATH...
CONCLUSION
 REFERENCES
 
The Need for Psychiatric Assessment
Psychiatric examination may be helpful in many cases involving cessation of life-support and should be a necessary part of the process of evaluating physician-assisted suicide.40 We disagree with, but appreciate, the reservations of Sullivan and associates,54 who fear that psychiatrists need to avoid becoming the gatekeepers for assisted suicide. In Oregon's initial experience with physician-assisted suicide,55 only 27% of patients who died by legal lethal ingestion had a psychiatric or psychological consultation. In the Netherlands, a 1996 survey of Dutch psychiatrists found that 37% had received at least one explicit patient request for physician-assisted suicide, and 30% had been consulted by doctors from other specialties.56 Psychiatrists, and especially consultation psychiatrists, have expertise in assessing psychopathology in the presence of medical disease, determining patients' capacity to participate in medical decisions, communicating with patients, families, and staff, and negotiating complex biopsychosocial problems.12,57

Assessment Considerations
Evaluation of patients who are asking to die should begin with a delineation of the individual circumstances.58 Many patients who say that they want to die are actually asking for assistance in living, and it is the responsibility of the clinician to psychodynamically explore and translate such requests.8,10,59 Every attempt in the United States to legalize physician-assisted suicide has started with the requirement that patients have terminal illnesses and are suffering. Considerable criticism has been leveled at the physicians in the Netherlands for extending their activities to include patients who are incompetent.60,61 Interestingly, there is a different standard for cessation of life-support treatment, and at least half the patients who discontinue dialysis lack the capacity to meaningfully participate in that decision (which is made for them by surrogates, families, and/or staff).

Figure 1 delineates some of the factors that we elicit in our evaluation of dialysis patients. Clinical decisions are based on what we loosely describe as a "vector analysis." One needs to "sum" up the vectors to determine whether they point in the direction of this being a reasonable or unreasonable course for the individual patient.



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FIGURE 1. The evaluation


It is not necessary for every factor to be exactly in accordance with the ideal, and each factor does not have the same weight as every other factor. For example, a patient may have limited capacity to express his wishes for dialysis discontinuation, but the family's request on his behalf should be respected if enough factors point in the reasonable direction (e.g., the patient is facing the necessity of a second, and dreaded, limb amputation, neuropathy causes unremitting misery, or treatment trials have been adequate). Community standards remain to be determined as to how much deviation from the ideal is acceptable for treatment cessation or physician-assisted suicide.

After the interview(s), there are a number of questions that the psychiatrist should be able to answer. These include, but are not limited to, the following: Why is this request being made now? Does this patient have a clinical depression? If depressed, is the depression of a sort that is interfering with the patient's ability to think through the decision? Would a delay of the decision be acceptable to the patient? Would the patient consider an antidepressant medication trial or other attempts at symptom management? What is the position of the patient's physician, family, and loved ones? How consistent is this death with the individual's life?

Assessment Complexities
There are a number of approaches that we employ in our examinations to deal with complicating factors.

1. The dilemmas of depression and competency. Although the Diagnostic and Statistical Manual (DSM) is a superb tool for diagnosing the physically healthy, it is overly dependent on phenomenology, and it stumbles in situations involving catastrophic illness, massive and progressive loss of function, inexorable deterioration, and imminent death.62 Current psychiatric nosology does not provide a reliable method to distinguish whether a physical illness or a depressive syndrome causes a symptom, and the diagnosis of depression is consequently entangled in a Gordian knot.63–65

Physical debility and cognitive impairment greatly hamper depression research involving severely ill populations. In a frequently cited study of the terminally ill,66 only one-quarter of the potential sample could meaningfully participate. With this considerable limitation, the researchers were still able to conclude from their comparison of Research Diagnostic Criteria and Endicott's Revised Criteria for Depression that small differences in the application of symptom thresholds result in dramatically large differences in prevalence rates for depression.66 Beck and associates67 maintain that depression should be suspected in any individual who refuses medical treatment, although Schuster and associates68 strongly link depression and the desire for death. These statements are complicated by the circular logic that predicates the desire for death as being the equivalent of ordinary suicidal ideation, which in turn is one of the DSM criteria for depression.

The issue of competency adds to this conundrum. As mentioned above, in contrast with cessation of life-support treatment, American proponents of physician-assisted suicide have uniformly required patients to instigate the process and to have the capacity to actively participate in these momentous decisions. Some opponents of physician-assisted suicide (or cessation of life-support) maintain that no competent individuals could possibly prefer death to life.69 Although there is general agreement that depression can interfere with the capacity to make sound medical decisions, there are few tangible guidelines in making such a determination.70 Although it is obvious that the presence of depressive delusions represents such interference (and these are easily detected), there is less clarity about the varying degrees of hopelessness found in the context of physical deterioration and approaching demise.71 Standardized tests for competency, such as the MacArthur Competence Assessment Tool-Treatment,72 are being developed but will require further modification before they can assess the subtle effects of demoralization or depression.73,74

However, in our experience with cessation of life-support, neither the diagnosing of severe depression nor the determining of capacity (competence) have posed insurmountable barriers. The key has been to widen the field to include the referring physician and the patient's loved ones. These individuals are in a position to offer information as to whether the patient is distraught or thinking clearly and consistently.

Furthermore, in an early description of the psychiatric assessment of life-limiting requests, McCartney emphasized the importance of the affective tone of the patient's relationships with family and the health care system and how this can be deliberate, positive, and not aggressive.75 The will to live after catastrophic loss is distinct from grief, despair, or depression and is closely linked to the individual's past and present sustaining relationships.76 The mood of most terminally ill patients considering death-hastening actions is not necessarily depressed, sad, irritable, or fearful. Instead, such individuals are often detached, peaceful, or even self-satisfied at having an opportunity to exert control, having their wishes respected, and be an active participant in treatment decisions.

In our clinical and research interviews, we rely heavily on the patient's perspective. We recommend describing the characteristics of major depression to patients and asking whether they believe themselves to have a "clinical depression" or "the illness of depression." This is consistent with the practice of Chochinov and associates,77 who found that several detailed, standardized, screening measures for depression did not approach the validity of a single-item interview that asked, "Are you depressed most of the time?" In our protocol, the DSM criteria for depression is supplemented by eliciting ancillary information associated with affective disorders, including a past history of depression when not physically ill, previous alcohol or drug abuse, a family history of psychiatric treatment, and a history of suicide attempts.78,79 Reliability can be confirmed by separate interviews of family members, and there also may be value in tape-recording evaluations.

2. Pain and physical suffering. Psychiatrists are not alone in receiving minimal training in the assessment and treatment of pain and other symptoms.80 In one survey, 72% of physicians said they lacked adequate knowledge to evaluate and/or treat severe pain.81 Nevertheless, a rigorous evaluation of palliative care efforts needs to be made before any decision is reached to hasten death or accede to suicide.82 Compassionate clinical management of dying patients requires attention to all dimensions of personhood; it must be coupled with proficiency in the technical management of physical symptoms.83,84 Depending on the psychiatrist's expertise with analgesia and symptom relief, it may be advisable for cases to be reviewed by a palliative care consultant.85

Although pain and physical suffering underlie many transient wishes to accelerate death, they may not be the most important factors associated with persistent wishes to die. During the first year of legalized physician-assisted suicide in Oregon,52 two-thirds of the patients were enrolled in a hospice program and only 7% of the patients expressed concern about end-of-life pain.

3. Psychological coping mechanisms. Denial and ambivalence complicate many of these examinations. Denial of death contributes to patients and physicians alike not completing wills or advance care directives and not engaging in an ongoing dialogue with each other about terminal care preferences.86–88 When patients with end-stage renal disease are able to overcome the denial-like processes (avoidance, distancing, and selective ignoring)89 and complete advance directives, more than 60% of one sample preferred that surrogates be given leeway to override their previously expressed terminal care preferences.90 This is indicative of patients' continuing uncertainty and ambivalence.

We would maintain that ambivalence and its related but more primitive coping mechanisms ("splitting," and "doing and undoing") commonly occur when people are faced with momentous decisions, as is the experience of anyone who has contemplated getting married, changing jobs, or purchasing a home.21 Not surprisingly, a desire for death among the terminally ill is both common and often transient.91,92 In our pilot study of dialysis discontinuation, three of eleven subjects had previously stopped and then resumed dialysis, and a fourth subject chose to resume treatment but died the following day.9 Subsequent clinical experience has revealed ample additional evidence of ambivalence among other patients considering dialysis termination.24 In our opinion, these coping mechanisms do not usually reflect the influence of psychopathology, but they do require exceptional flexibility, tolerance, and sensitivity on the part of the evaluator and treatment team.

4. Character assessment. Characterological factors are of major importance in understanding wishes to hasten death. Patients who choose to forego treatment or who seek physician-assisted suicide very often have strong needs for control in order to avoid feelings of helplessness. Prominent independence, perfectionism, and narcissistic traits may be present as well.13,24 Such patients may have been very successful in their occupations, although they may also have acquired justifiable reputations for being difficult and demanding. Patients with these character traits are particularly vulnerable to the vicissitudes of severe debilitating or terminal illness. Frequently, they set conditions or limits on how long they will struggle with their diseases and may decide abruptly to hasten death when their tolerance for suffering and loss of control is exceeded.

In Oregon, patients who died through physician-assisted suicide were 7.3 times more likely than control patients to be concerned about loss of autonomy and 9 times more likely to express concern about loss of bodily functions.55 They were also far less likely than control patients to be severely debilitated and bedridden.

When patients are willing to participate in psychotherapy, a psychiatrist may be helpful in reframing the patients' dilemma and enabling them to view things differently. Depression can intensify patients' characteristic rigidity or controlling nature, and treatment of mood disorders may alter patients' assessment of their choices. Fear and dread of an uncertain future can sometimes be allayed by a caring and knowledgeable physician.93 On the other hand, characterological features are often immutable, and individuals with the previously described personality constellation may truly suffer from the stresses and compromises of terminal illness.

5. Family, ethnicity, and other factors. Dying is not only what happens to the patient but also what the family remembers.94 Considerable attention needs to be spent on evaluating families and helping them find ways to ease profound fatigue95 or come to peace with the patient's request.96 Our clinical experience has reinforced the value of reaching decisions that are uniformly understood and accepted by the patient's loved ones. Unfortunately this is sometimes impossible, and one may encounter fractious or pathologically bound families whose tortured histories can simply not be healed or circumvented in a timely fashion. However, in most of our cases families have eventually rallied around the patient and come to appreciate the individual's situation.

Although this paper has presented a Western approach to suicide and life-limiting behaviors, in a pluralistic society a multicultural perspective may require attention to African, Islamic, Hindu, and other beliefs and values.97 Ethnic, gender, economic, and educational differences between family and staff may obstruct communication and pose barriers to trust.98,99 These differences contribute to the consistent finding in studies of dialysis discontinuation that African-American patients withdraw from treatment one-half to one-third the rate of Anglo-American patients.100

The referring physician or health care team may also have to contend with its own varying expertise in symptom management, the presence of professional "burnout," and the staff's diverse values and belief systems.101,102 Likewise, the presence of patient substance abuse, character pathology, and antisocial behavior may produce relational difficulties that hinder attempts at objective assessment. No one wants hastening death to become a routinized medical practice, raising the question as to whether provisos and safeguards can be erected to protect the disliked, very elderly, disabled, and indigent.84,103


  CONCLUSION

 
TOP
 ABSTRACT
 INTRODUCTION
 BACKGROUND
 PSYCHIATRIC EVALUATION OF DEATH...
 CONCLUSION
REFERENCES
 
The authors' opinions have been influenced by extensive clinical and research contact with patients who discontinue the life-support of dialysis, but as has been previously stated, these opinions are not drawn on direct experience with physician-assisted suicide. We believe that dialysis cessation has much to teach us about the many life-limiting decisions that are becoming increasingly widespread in medicine.104,105 It is not presently considered to be ethically or legally problematic, and it is an option that is being chosen by sizable numbers of articulate patients and their families. We appreciate that physician-assisted suicide is the least employed of the death-hastening options and hope that our focus on this controversial practice does not detract from more common clinical situations, such as whether to shift from curative to palliative care, whether to write a "no-code" order, or whether to initiate aggressive analgesia that will shorten a patient's life while controlling symptoms. Psychiatry has been slow to reflect the reality of choices that are now integral to the management of terminal illness,106 but we believe that selective psychiatric assessments can offer considerable benefit to patients, families, and staff in clarifying these difficult therapeutic junctions.

In addition to identifying psychopathology and ordinary suicidal ideation and to determining whether patient requests are voluntary and rational, psychiatric practitioners ought to become familiar with the principles of modern palliative care and be prepared to ascertain suffering and the adequacy of medical treatment.48,107 Psychiatrists can become physician stewards, a term used by Callahan108 to describe staff who assist the dying to avoid overtesting, overtreatment, and overmedicalized care. Psychiatrists are not immune to our culture's misgivings and antipathy to death and should be provided with training that increases their familiarity with this subject.109 The discipline of psychiatry needs to broaden the framework of suicide and life-limiting behavior, continue researching the factors that complicate evaluations, and further develop sensitive treatment and assessment protocols for these complex and engrossing clinical situations.


  ACKNOWLEDGMENTS

 
The Dialysis Discontinuation Study was funded through a grant from the Greenwall Foundation, New York, NY. It was also supported by a grant from the Project on Death in America, a program of the Open Society, New York, NY. Dr. Cohen is a Fellow in the Faculty Scholars Program of the Project on Death in America. He is also the principal investigator of the Renal Palliative Care Initiative, which is a demonstration project funded by the Excellence in End-of-Life Care Program of the Robert Wood Johnson Foundation.


  REFERENCES

 
TOP
 ABSTRACT
 INTRODUCTION
 BACKGROUND
 PSYCHIATRIC EVALUATION OF DEATH...
 CONCLUSION
 REFERENCES
 

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