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Depression and Suicidal Ideation in Patients Who Discontinue the Life-Support Treatment of Dialysis

From the Department of Psychiatry, Baystate Medical Center (L.M.C.), Springfield, Massachusetts; Department of Psychiatry, Portland VA Medical Center (S.K.D.), Portland, Oregon; Department of Psychiatry, Albert Einstein Medical Center (K.C.H.), Philadelphia, Pennsylvania; School of Public Health and Health Sciences, University of Massachusetts (P.S.P.), Amherst, Massachusetts; and Department of Psychiatry and Family Medicine, University of Manitoba, and CancerCare Manitoba (H.M.C.), Winnipeg, Manitoba, Canada.

Address reprint requests to: Lewis M. Cohen, MD, Baystate Medical Center, S2669, Springfield, MA 01199. Email: lewis.cohen{at}bhs.org

	ABSTRACT

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OBJECTIVE: The objective of this study was to determine the prevalence of major depression and suicidal ideation in patients who stop the life-support treatment of dialysis.

METHODS: The authors prospectively studied 79 subjects who discontinued maintenance dialysis at eight facilities in North America. Structured interviews were conducted with 23 patients and 76 families.

RESULTS: The prevalence of major depression in the sample was between 5% and 25%, and only 1 of 22 patients considered himself to have the illness of depression. Approximately 12% of the respondents were unsure or believed that discontinuing dialysis was the equivalent of suicide. This belief did not correlate with measures of depression. In comparison with the general population there seemed to be an increased prevalence of past suicide attempts.

CONCLUSIONS: Most patients who decide to stop dialysis do not seem to be influenced by major depression or ordinary suicidal ideation. Although the sample size was small, these results highlight the need to further examine the theoretical framework and terminology of depression and suicide in the context of terminal illness.

Key Words: dialysis, • depression, • suicide, • life support.

Abbreviations: ESRD = end-stage renal disease.

	INTRODUCTION

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Increasingly patients are making death-hastening decisions, such as to forego aggressive therapy that could provide better chances of survival, to discontinue life-prolonging treatment, or even to take their lives through physician-assisted suicide (1, 2). One in four patients with end-stage renal disease (ESRD) is now withdrawn from dialysis before death, and the rate of dialysis cessation has tripled in the past decade (3, 4). Most bioethicists, Western theologians, and major healthcare organizations draw a "bright line" between suicide and termination of life support (5). The Catholic Church, for example, has explicitly stated in a papal encyclical that individuals who choose to stop a ventilator or dialysis are not subject to the prohibitions associated with suicide (6). The US Supreme Court has reinforced this distinction (7). Organized medicine, including the American Psychiatric Association, has also condoned termination of life-prolonging and related practices while generally condemning physician-assisted suicide. Although a small number of individuals in Oregon seeking physician-assisted suicide are being studied (8), little empirical work has been done with the much greater number of people who choose to stop life support.

Concerns are regularly raised as to whether depression is underrecognized and undertreated in patients who seek termination of life-support treatments and whether these patients are influenced by psychopathological processes (9, 10). Prevalence rates of major depression in the ESRD population have ranged from 0% to 100% (11). However, there is little convincing evidence that the prevalence of major depression in this population is greater than that of the general public (12).

In 1971 Abram et al. (13) reported an ESRD suicide rate of 400 times that of the general population. To arrive at this figure, they lumped together deaths due to obvious clinical suicide attempts with those from noncompliant patients and patients who terminated dialysis. By 1978 Abram had doubts about this approach and asked, "When does the prolongation of living turn into the prolongation of dying?" (14). Psychiatrists such as McKegney and Lange (15) also came to see termination as an understandable rejection of the hardships of dialysis, concluding that death by the natural course of a disease is not the same as self-destruction by a physically healthy individual. A recent calculation of the ESRD suicide rate, excluding deaths preceded by treatment cessation, has found that dialysis patients have only a somewhat higher rate of suicide (0.3/1000 patient-years) compared with the general population (0.12/1000 person-years) (16).

A pilot study by Cohen and associates was the first prospective investigation of dialysis discontinuation (17–19). Our study investigated the process by which patients and families from a single dialysis program made their decisions, and it described the ensuing quality of dying. The present prospective, multicenter study was designed to further explore psychosocial and physical aspects (20, 21). This article focuses on the prevalence of depression and inquires whether patients and families consider dialysis cessation to be the equivalent of committing suicide.

	METHODS

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The sample was drawn from eight dialysis clinics in the United States and Canada. Research teams consisting of a psychiatrist, nephrologist, and renal social worker were established at each site. Local institutional review boards approved the study protocol and the informed consent procedure. All of the nephrologists agreed to rapidly notify the study site team when patients stopped maintenance dialysis and to inform them as to whether they could meaningfully be interviewed. Subjects included all adults receiving peritoneal or hemodialysis for at least 3 months. After referral, the site team psychiatrist or social worker contacted the patient and/or family to obtain signed informed consent.

A structured interview protocol (available on request) was developed and modeled after an ordinary psychiatric consultation. It was anticipated that many patients would not be able to directly participate in interviews due to cognitive problems and physical frailty. Parallel interviews were conducted with families, and information about patient demographics and medical history was gathered from chart review. Interviews were recorded on audiotape.

Depression was examined using a two-step approach. First, patients were described the criteria for major depression and asked if they believed themselves to be depressed (see Appendix for wording of the question). Second, the individual criteria were repeated to determine which, if any, symptoms were endorsed. Data were also obtained regarding whether the individual had ever been depressed in the past (particularly before becoming physically ill), had been diagnosed with other mental conditions (such as alcoholism), or had received treatment from mental health professionals (22). The interviews also inquired whether any family members had emotional problems or had undergone psychiatric treatment. To determine how the decision to stop dialysis was viewed, patients and families were asked, "Do you think of the decision to stop dialysis as being suicide?" They were also asked whether the patient had ever made suicide attempts in the past and whether there was a family history of suicide attempts or completion.

Regional ESRD networks supplied information about deaths occurring at the American clinics during the period of data collection. Research forms were forwarded from the sites to a single facility for entry, and data were double entered and verified. Simple frequencies of responses to interview questions, chart review, demographic data, and the quality of dying scales were produced, along with the means, standard deviations, and percentiles for continuous scale data. ² tests and t tests or Wilcoxon rank-sum tests were used to evaluate demographic and medical status differences among study participants and nonparticipants. The proportion of those responding positively to questions on the presence of depression, specific symptoms, and other mental conditions, along with exact binomial confidence intervals, were computed to provide estimates of prevalence for the population from which the sample was drawn (23). Agreement between patient and family responses was measured as the percentage agreement, and the statistic for chance corrected agreement was estimated.

	RESULTS

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During the data collection period from October 1, 1995, to September 30, 1997 (briefer for some of the sites), there were 131 deaths preceded by dialysis discontinuation. Death occurred from 1 to 46 days (median = 6) after the last dialysis treatment. Information about patients’ symptoms and terminal course have been described elsewhere (20, 21). There was large variability in the number of cases contributed per site because of varying clinic size, termination rates, and amount of time for data collection. Seventy-nine (60%) of the subjects completed the study protocol; 49 (37%) were not referred or were referred too late to be interviewed. Three (2%) refused to participate.

Table 1 summarizes the demographic characteristics of study subjects and patients who were not referred or refused to participate. There were no significant demographic differences between study subjects and patients who were not referred or who refused to participate, other than a significantly higher referral rate of women than men (² = 6.9, p = .008). More than half (56%) of the sample had inanition or failure-to-thrive syndromes, nearly one quarter (23%) had dementing illnesses, and one quarter (24%) had a history of cerebral vascular accidents. The most recent mode of dialysis was in-center hemodialysis (83%), and the duration of dialysis ranged from 4 to 108 months with a mean of 34 months (SD = 24.8).

Depression
Table 2 lists patient and family responses to questions about specific symptoms of depression, and Table 3 lists responses to questions about prior psychiatric diagnoses, treatment, and suicide attempts. When patients were asked if they believed themselves to have an illness of depression, 5% (1 of 22; 95% CI = 0.1–23%) answered affirmatively, 9% (2 of 22) said they were unsure, and 86% (19 of 22) said they were not depressed. Ten percent (2 of 22) of the patients reported five or more individual depression criteria. Twenty-five percent (19 of 76) of the family members who were separately interviewed said they believed the patient to be depressed (95% CI = 16–36%), 12% (9 of 76) were unsure, and 63% (48 of 76) did not think the patient was depressed. According to both sources, sleep disturbances and concentration problems were the most prevalent individual depression criteria.

Table 4 describes agreement between patient and family responses regarding depression. Among the 19 cases with both patient and family responses to the question on depression, there was agreement in 11 (58%). For all of these cases, neither the patient nor the family felt the patient was depressed. There were no cases where both the patient and family felt the patient was depressed. In 6 of 17 cases where the patient responded "no," the family believed the patient was depressed (N = 4) or were unsure (N = 2). One patient responded "yes" and another "unsure"; in both cases the family did not believe the patient was depressed. Consequently, the statistic is negative, indicating less agreement than expected by chance alone. However, for most of the individual symptoms and a past diagnosis of depression, statistics indicate moderate agreement between patient and family responses.

	DISCUSSION

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Depression
Despite deteriorating medical courses and the imminence of death, the study subjects who could be interviewed rarely viewed themselves as suffering from major depression, and three quarters of their families concurred with this assessment. Critical examination of the ESRD literature suggests that moderate depressive syndromes are likely in about 25% of patients and major depression in 5% to 22% of patients (12, 25). Using our diagnostic approach, we found approximately the same range of depression among the population of ESRD patients who terminate dialysis.

The diagnosis of depression is very difficult to make in ESRD patients. Many of the somatic symptoms that constitute DSM-IV criteria for a major depressive episode are common sequelae of renal failure, and they confound depression inventories (26, 27). Intermittent sadness and depressed mood may be normative phenomena among severely ill or dying people, and they need to be distinguished from the prominent dysphoric mood or loss of interest that characterize major depression (28–32). Similarly, the "will to live" of terminally ill patients may fluctuate in response to a variety of distressing symptoms, and the relationship between "desire for death" in major depression still needs to be clarified (33–35). It is unclear whether the wish to die is normative for some—or even most—individuals who want an end to an unpleasant or unrecognizable existence.

Several authors have made the point that depression can interfere with decision-making capacity and should be suspected in any patient who refuses medical treatment (36, 37). Ganzini et al. (38) have described how the terminal care preferences of depressed patients can change after therapy. However, it remains to be determined whether dysphoria among the dying is better conceptualized as anticipatory grief rather than depression. A broader theoretical framework for diagnosing depression in the context of terminal disease is needed.

In severely ill populations, issues of patient cooperation and availability of time have led to the development of alternative, simpler, and more rapid diagnostic methods for detecting depression than the lengthy structured interviews based on the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV). These include the two-question approach by Whooley et al. (39) and the single question approach of Chochinov et al. ("Are you depressed most of the time?") (40). The two-step approach of Cohen et al. used in the present study was derived from extensive consultation experience with the medically ill and was intended to identify major depression, in particular the early onset late-life major depressions of the elderly (41, 42). It involved describing the DSM-IV diagnostic criteria and then inquiring whether patients "believe themselves to have the illness called depression" (43). This key question was supplemented by collecting criteria data and historical information about the patients and their families. All of these diagnostic approaches warrant comparison and further study.

It is essential that depressed patients be identified and offered appropriate treatment. In our clinical work we have advised some individuals to defer terminating dialysis. Trials of psychotropic medications have frequently been helpful, and certain patients have benefited from admission or even involuntary commitment to psychiatric facilities. However, our experience is also consistent with the observation that the majority of these psychiatric consultations are conducted with psychologically "normal" people who faithfully adhere to a demanding treatment over a period of multiple years. During this time their underlying medical conditions have inexorably progressed and worsened, and their quality of life has eroded. Although it is important to be alert to the possibility of psychopathology, in most cases we have found patient requests to be sincere and uncluttered communications that "enough is enough."

Suicidality
Most study patients and families did not believe that termination of dialysis was the equivalent of suicide. No association was detected between our measures of depression and the belief that termination of dialysis constitutes suicide. On the other hand, the subjects did seem to have an increased rate of past suicide attempts as compared with the general public.

Although only 15% of the sample answered positively or were unsure whether the decision to terminate dialysis was equivalent to suicide, it is difficult to ignore this minority opinion. These patients and families could be at risk for feeling burdened by the stigma of suicide. We have suggested elsewhere that it may be helpful to broaden the vocabulary and theoretical framework of suicide (1). In Durkheim’s seminal sociological study, "suicide" was the term used for all voluntary endings of life, and he distinguished between several different types (44). We have likewise delineated three categories of suicides: ordinary (or clinical), altruistic, and preemptive (1). Ordinary suicide is what psychiatry has focused on preventing and is prohibited by most organized religions. Altruistic suicide is exemplified by the soldier who throws himself on top of a grenade to protect his comrade. Preemptive suicide is applicable to terminally ill individuals (such as those with ESRD) whose lives are extended by artificial means. Some behaviors may be rooted in two or more forms of suicide, and it would be important to identify if a patient was stopping a life-support treatment (preemptive) while suffering from a suicidal depression (ordinary). Using this approach, Carrol has described physician-assisted suicide as being an example of preemptive suicide, whereas others might consider it to be a hybrid with the ordinary type (45).

Factors that may differ according to suicide type are the reactions of survivors to the aftermath of the deaths and the degree of associated social stigma. For example, families often report that ordinary suicides are explosive events that cause their world to suddenly become surreal (46). Preemptive suicides may not have this effect. Ordinary suicide is often associated with high degree of social stigma, whereas altruistic suicide can be associated with admiration and high regard. We suspect that preemptive suicide may be associated with a high degree of perceived stigma for some patients and families and low stigma for others, influencing the perception and labeling of dialysis termination as suicidal. We are in the process of contacting the families from the present sample to investigate their long-term reactions. We have already done this on a small scale with another sample of families in a bereavement interview study and concluded that they seemed to be grieving in an ordinary and nontraumatized way (47). Counseling might be offered to those who perceive a stigma will be associated with the death to assure that grieving will follow an ordinary pattern.

Limitations
Research investigations concerning end-of-life issues are difficult to perform and few in number (48). The patient population is generally quite elderly and physically debilitated, and cognitive ability is frequently impaired. Psychiatric nosology and most standardized measures often fail in the context of catastrophic medical disease. Furthermore, the terminal stage of life is a time of intimacy and privacy between patients and loved ones, and researchers need to compromise between scientific curiosity and humane sensitivity.

The study was designed with appreciation that the DSM-IV often stumbles in the context of old age, catastrophic illness, and imminent death and that depression is a heterogeneous condition with multiple causes (37). Psychomotor retardation and agitation were excluded because they could not be accurately determined with severely incapacitated subjects. The diagnostic approach that was selected chiefly involved ascertaining the patient and family perspective of the presence of a major depression. Use of the two-step question would not have identified minor depressions or patients who do not consider themselves to be depressed and instead complain excessively of somatic symptoms (49). Unfortunately, the methodology was also not designed to delineate other psychiatric disorders, such as the highly prevalent delirium and dementing illnesses.

Nonreferrals or delayed referrals, the choice of the research sites (according to interest in the topic and availability of a psychiatrist), and the disproportionately larger recruitment of subjects from western Massachusetts (the home base of the principal investigator) were all factors that likely influenced the composition of the sample. So too was the decision to refrain from administering the Mini-Mental State Examination and to instead rely on the judgment of the referring physician as to whether patients were cognitively intact for participation.

Patients and families may have resisted acknowledging symptoms of depression or identifying termination of dialysis as being suicidal out of fear that their decision would be reversed. Furthermore, family interviews may have missed the presence of depression in some patients for whom no interview could be conducted. Family members may have been unaware of patients’ emotional states because of lack of regular contact or truthfulness or if the patient’s emotions were obscured by organic brain syndromes.

	CONCLUSIONS

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Dialysis staff and families should be reassured that a substantial majority of subjects do not seem to have major depressions, nor are they acting on a suicidal wish. However, the finding of an increased prevalence of past suicide attempts suggests the need for selective psychiatric consultations with patients withdrawing from life support. Psychiatrists may be of considerable help to their nephrology and medical colleagues if they can expeditiously identify and assist in the management of those few patients whose requests are prompted by psychopathology. Alternatively, there is a danger of consultations being obstructive if psychiatrists maintain that "death is the ultimate enemy in medical illness" (50) and if they reflexively judge requests to stop life support as being manifestations of clinical depression and ordinary suicidal ideation.

The study found that the majority of patients and families, like most physicians, ethicists, judges, and theologians, draw a line between stopping the life-prolonging treatment of dialysis and committing suicide. Nevertheless, there is a distinct minority of subjects who equate terminating dialysis with suicide. Consequently, the study raises the possibility that the line may need to be dotted rather than solid (51). The research highlights the necessity for a further examination of the theoretical framework and vocabulary of depression and suicide in the context of terminal illness.

APPENDIX
"Do you consider yourself to have an illness called depression? I am not referring to merely feeling sad or blue, but rather having a prolonged feeling of sadness or loss of pleasure for 2 weeks or more, that is often accompanied by a weight change, altered sleep, suicidal wishes and/or thoughts about death, poor concentration, and feelings of worthlessness. So, according to this, do you consider yourself to have an illness called depression?"

	ACKNOWLEDGMENTS

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The research was funded through grants from the Greenwall Foundation, New York, New York, and the Project on Death in America, a program of the Open Society Institute, New York, New York. Dr. Cohen was a Fellow in the Faculty Scholars Program of the Project on Death in America and is funded by Promoting Excellence in End-of-Life Care of the Robert Wood Johnson Foundation. We thank the Western New England Renal and Transplant Associates, Springfield, Massachusetts; the Berkshire Medical Center Dialysis Center, Pittsfield, Massachusetts; the Greenville Dialysis Center, Greenville, North Carolina; the Toronto Hospital Dialysis Program, Toronto, Canada; the Yankee Family Dialysis, Greenfield, Massachusetts; Southern Maine Dialysis Facility, Portland, Maine; the University of Alberta Chronic Renal Failure Program, Edmonton, Alberta, Canada; and the Albert Einstein Medical Center Dialysis Program, Philadelphia, Pennsylvania. Additional thanks to Peg Madden-Butorac for coordinating the research.

Received for publication September 13, 2001.

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