Psychosomatics 50:1-7, January-February 2009
doi: 10.1176/appi.psy.50.1.1
© 2009 Academy of Psychosomatic Medicine
Differentiating Suicide From Life-Ending Acts and End-of-Life Decisions: A Model Based on Chronic Kidney Disease and Dialysis
John Michael Bostwick, M.D., and
Lewis M. Cohen, M.D.
Received February 23, 2007; revised June 1, 2007; accepted June 5, 2007. From the Mayo Clinic, Dept. of Psychiatry and Psychology, and the Dept. of Psychiatry, Tufts University School of Medicine, Baystate Medical Center, Springfield, MA. Send correspondence and reprint requests to John Michael Bostwick, M.D., Associate Professor of Psychiatry Mayo Clinic, Dept. of Psychiatry and Psychology, Mayo Building., W11A, 200 First Street SW, Rochester, MN 55905. e-mail: bostwick.john{at}mayo.edu
© 2009 The Academy of Psychosomatic Medicine
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ABSTRACT
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BACKGROUND: Technological advances continue to yield life-prolonging treatments that complicate the occurrence of death. Until recently, refusal to submit to recommended care was considered suicide. OBJECTIVE: Physicians must now decide how to respond to requests for hastened dying. METHOD: The authors propose a four-square grid distinguishing true suicide from behaviors such as treatment termination and lethal noncompliance. RESULTS: One axis characterizes whether actions hasten death. The other identifies how the patient’s social and medical network collaborate in the decision-making process. CONCLUSION: Using chronic kidney disease to model intent and collaboration, treatment is framed within a paradigm that reflects both end-of-life decision-making complexities and contemporary conceptualizations of suicide.
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INTRODUCTION
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"John Kelly" (the patient’s name has been changed for purposes of confidentiality) is a 76-year-old man who was seen for a psychiatric consultation in connection with his decision to withdraw from dialysis. He wanted to know, "Is this the same thing as committing suicide?" Neither his nephrologist nor his family believed that he was depressed or suicidal. Having developed renal failure from diabetes 8 years previously, Mr. Kelly was a model patient, who adhered to the many requirements of hemodialysis, and he had successfully dealt with an amputation, peripheral vascular disease, diabetic neuropathy, and gastropathy. An observant Catholic, he had a loving and supportive family, who appreciated his capacity to make the dialysis discontinuation decision when faced with another amputation. This was Mr. Kelly’s first psychiatric contact, and it confirmed the impression of his caregivers, determining that he fully appreciated his circumstance and his options.
As life-prolonging therapies become increasingly available, large numbers of patients, families, and doctors are daily confronted with decisions to withhold or withdraw treatment. Cardiologists, for example, must occasionally face individuals with implantable cardiac defibrillators, who are traumatized by firings that seem worse than death itself. Under what circumstances should the physician acquiesce to a patient’s request to turn off the device, and thereby greatly enhance the likelihood of death by arrhythmia? On a daily basis, oncologists are similarly confronted by palliative medicine’s pivotal question: "When is enough really enough?" Estimates now suggest that as many as 75% to 90% of the 500,000 deaths that take place in critical-care units are preceded by death-hastening decisions.1 Death has become exponentially more complex as medical practitioners wrestle with the dilemma resulting from the technological wizardry in sustaining life that does not necessarily ensure an acceptable quality of life. Moreover, one-sided paternalism no longer passes for reasonable clinical practice. Under the bioethical banner of autonomy, Americans are increasingly demanding to make their own choices about living and dying. Patients and families feel increasingly empowered to decide whether to follow or ignore doctors’ prescriptions, particularly when they are made without eliciting the consumers’ full understanding, cooperation, and collaboration. This article is informed by a modern psychiatric sensibility and is illustrated by examples derived from the authors’ experiences with chronic kidney disease (CKD).2,3 Although Mr. Kelly’s religious convictions contributed to his concerns that he might be committing suicide, attention will not be focused on theological issues other than to emphasize that, despite the rhetoric surrounding the Terri Schiavo case4 and the concerns raised by the late Pope John Paul’s allocution on end-of-life care,5 a 450-year tradition in Catholic moral teaching has established that if there is no physical or spiritual benefit to be gained in sustaining life, then there is no moral obligation to do so.6
Discontinuation of life-support is not considered by the Catholic Church to be the equivalent of suicide. This proposed taxonomy of death is applicable to a variety of medical conditions. It has been developed to reflect not only the complexity of end-of-life decision-making, but also a contemporary conceptualization of suicidal behavior. With its twin emphases on the patient’s intent and the collaborative nature of decisions, the model presents a novel way to classify how patients die. The approach offers practitioners a practical means to determine when to oppose or support patient and family requests that will result in hastened dying.
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Changing Conceptualizations of Suicide
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The French sociologist, Emile Durkheim, ushered in the modern era of suicide studies with his 1897 book, "Suicide: A Study in Sociology."7 His definition of suicide was an inclusive one, encompassing "all cases of death resulting directly or indirectly from a positive or negative act of the victim himself which he knows will produce this result." Key to Durkheim’s definition was that the victim has death as a goal, and knows that what he is doing to himself or permitting another to do to him will prematurely end his life. Durkheim understood that the meaning of words like "suicide" when used in everyday parlance could be misunderstood. He wrote, "If the authors follow common use, the authors risk distinguishing what should be combined, or combining what should be distinguished, thus mistaking the real affinities of things, and accordingly misapprehending their nature."7 Durkheim appreciated that not only vernacular usage but also the passage of time would alter and complicate the meaning of suicide. Definitions change as societies evolve, and modern psychiatric scholars have suggested that the advent of sophisticated medical technologies require a redefinition of death itself.
Gray has opined that, "Key terms ... need careful delineation, (including) ‘death,’ the distinction between ‘ordinary’ and ‘extraordinary’ measures in medical treatment, and the distinction between active and passive killing—the distinction between killing and allowing to die."8 Hershenov draws a strong line between an organism’s ability to revive itself, presumably through healing, and the requirement of permanent external intervention to maintain life.9 New nomenclature is clearly needed for decisions to forgo as well as to withdraw treatment. The distinction between clinical suicide and other types of end-of-life decisions demands a new formulation. As the field of suicide studies has matured, Durkheim’s definition has been recognized to be both too broad and too vague to encompass the range of behaviors falling under the "suicide" rubric. Significantly, O’Carroll and colleagues distinguish the "apple" of suicidal acts from the "orange" of instrumental behavior.10 The latter is synonymous with a widespread phenomenon called parasuicide, and is especially common among patients with personality (Axis II) disorders. Parasuicide involves instrumental behavior resulting in self-injury with some primary motivation other than death. Separate from whether the act could—and does, on occasion—succeed in killing the actor, it is clear from interviewing survivors of parasuicide that many had no intention of dying and no desire for death. Instead, they may have harmed themselves out of "anger in the nth degree," attacking themselves, rather than the objects of their rage. Such individuals may have alternatively acted to gain—or regain—the attention of a spouse, lover, or parent. For others who commonly engaged in repetitive self-injurious behavior, the act of inducing painful self-injury may serve such distinct functions as regulating intolerable emotions, relieving uncomfortable dissociation, or preventing a lapse toward psychosis.
Contemporary suicide definitions do not emphasize the nature of the act or the underlying reason for it, but its intent. If the victim intended to die, then it is suicide. By this reasoning, noncompliance with treatment would generally not be considered true suicide. On the other hand, by relying on this standard, treatment-withdrawal or treatment-refusal would strictly be considered suicide. And yet, in equating these entities, it is worth recalling Durkheim’s admonition against "combining what should be distinguished." The complexities that distinguish these situations—they may occur among terminally ill and suffering individuals who were often ideal patients in their adherence to onerous medical procedures—is obliterated with a common suicide label.
Furthermore, modern suicidology offers another factor to differentiate these situations from suicide: the extent to which the social milieu sanctions or supports the behavior. In the case of traditional suicide, this behavior has been an anathema to most societies, and has been both criminalized by law and prohibited by religion. Families and loved ones who experience the death of a loved one by suicide are inevitably traumatized and distraught.11 This is not necessarily the case with deaths preceded by withholding or terminating life-support treatments.12,13 Admittedly, in certain ethical systems, suicide is the ultimate autonomous act, and some contemporary, iconoclastic psychiatrists, such as Szasz, still consider cessation of life-support treatment to be an example of suicide.14 Gray has written, "Determining the circumstances of one’s own death, according to this principle, should be allowed, provided it is a self-regarding act."9 He continues, "If so, like other self-regarding acts, it should be exempt from the interference of others." The implication of such a position, however, is that it limits or disregards the inescapable reality that nearly all individuals live within a social fabric and have obligations to others sharing that fabric.
The "tunnel vision" of the suicidal mindset may actually be understood as malignant narcissistic preoccupation masquerading as autonomous self-regard. Overdosing with medications or slicing open one’s dialysis shunt and exsanguinating exemplify deadly noncollaborative acts. Iconoclasts aside, the majority of psychiatrists are in agreement that true suicides and suicide attempts are pathological behaviors warranting vigorous medical and psychosocial intervention.
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The Lessons of Chronic Kidney Disease
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Thirty-five years ago, Abram and colleagues15 conducted a seminal study of CKD deaths, in which they used an exceedingly broad definition of suicide that was inclusive in the tradition of Durkheim. In addition to deliberate self-injury resulting in death, they counted treatment-withdrawal and treatment-noncompliance as suicide-equivalents, with the vast majority of "suicides" resulting from failure to adhere to treatment recommendations. Abram drew the alarming and still widely quoted conclusion that, "If one includes in successful suicides withdrawal from programs, and deaths through not following the treatment regimen, the incidence of suicidal behavior [in dialysis patients] is more than 400 times the rate of the general population."15
Consider the case of "Jared Persky," a 19-year-old college student who developed insulin-dependent diabetes at age 4 and renal failure at age 16; he had been dialysis-dependent for 2 years. He had already experienced one renal transplant failure and was awaiting another kidney. Rebellious and sensitive to perceptions about being different from his peers, he occasionally missed dialysis sessions if he felt that he had "something better to do;" he frequently forgot to take his medication, and chronically failed to comply with dietary limitations. He and his parents had met several times with the nephrologist, who had instructed them about the potential lethality of Jared’s behavior. One night, after a missed session and a feast of cheeseburgers and fries with his buddies, he sustained a hyperkalemia-induced cardiac arrest and died. According to the terms of their 1971 paper, Abram would have considered Jared’s death from dietary and treatment noncompliance a suicide.
Six years after the publication of his study, however, Abram asked the question, "When does the prolongation of living turn into the prolongation of dying?"16 By 1986, Neu and Kjellstrand17 brought this inquiry into high relief when they reported in a landmark study that 22% of the CKD deaths at their Minnesota dialysis clinic were preceded by treatment cessation. Psychiatrists such as McKegney and Lange18 also came to see treatment termination as an understandable rejection of dialysis hardships, concluding that death in the natural course of a disease is not the same as self-destruction by a physically healthy individual.18
Presently, the United States Renal Data System (USRDS) tracks approximately 300,000 Americans who are maintained with dialysis and collects data from the 70,000 CKD deaths that occur each year. Nationally, about one in five of these deaths are preceded by withdrawal of dialysis, although there are regional variations; that is, in New England, the figure is closer to 1 in 3 deaths.19–21 A demographic profile of patients who discontinue dialysis finds that they are generally elderly, white, diabetic, and severely ill. Between one-third and one-half of the deaths likely occur in situations where patient capacity is impaired and family members or other proxies assist the medical team in arriving at the decision. Clinical decisions are now aided by published guidelines (see Shared Decision-Making in the Appropriate Initiation of and Withdrawal From Dialysis22).
Although death is inevitably sad, a prospective study of the qualitative aspects of dying after dialysis cessation has found that 85% of the deaths are judged to be good. Especially when medical and familial interests concur, many of these deaths are not only good, but "very good."23 When symptoms are well-managed and where all participants collaborate and achieve agreement, death is often recalled as being merciful, compassionate, and even uplifting. Families and loved ones may find such deaths to be an epiphany and not a trauma. This stands in stark contrast to descriptions by families after true suicides. Estimates of suicide prevalence among CKD deaths have been steadily decreasing, although they are still slightly higher than the age- and gender-matched general population. After Abram and colleagues’ 1971 claim that 5% of their subjects were suicides, Neu and Kjellstrand classified only 3 of the more than 700 deaths in their 1986 sample (<0.5%) as actual suicides.18 The most recent review of 465,000 Centers for Medicare and Medicaid Services (CMS) end-stage renal disease (ESRD) death notification forms classifies only 0.005% of CKD deaths as being true suicides.24
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Using a Grid to Differentiate CKD Deaths
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We propose a four-square grid to categorize different types of CKD deaths involving patients who are psychiatrically competent (although it could similarly apply to situations involving substituted judgment for incompetent patients). As shown in Figure 1, on one axis, deaths are delineated according to whether the primary intention of the decision or behavior is to hasten dying. Positive intent also includes situations in which the inevitability of death is acknowledged and reflected in treatment decisions. The second axis examines the social milieu and whether the death takes place with the collaboration and support of others.
Beginning with the upper quadrant on the right are deaths that the patient intends, but that his social network—if consulted at all—opposes. Chief among these are true suicides. Also in this quadrant are deaths of patients who independently decide to no longer attend scheduled dialysis sessions or who unilaterally refuse dialysis initiation against the preferences of staff and loved ones. "David Brown’s" story illustrates such a scenario:
A 53-year-old married father of two, David Brown had always hated the dialysis-dependence he developed 8 years ago in the context of diabetes-induced renal failure. He blamed dialysis for no longer being able to spend uninterrupted weeks hunting and fishing at his isolated wilderness cabin, and he had become increasingly despondent as his peripheral circulation worsened and he faced amputation of his left leg. When his wife of 20 years, who had pushed him to continue dialysis "for the sake of the grandchildren," took a 2-week trip to Europe without him, he failed to show up for his 3-times-weekly dialysis sessions. Upon her return, she found him dead at the cabin, a gunshot wound behind his left ear and a note at his side saying, "I did it my way."
Evaluation and management of such occurrences are covered in the published guidelines formulated by a taskforce from the dialysis community.25,26 By diagnosing and treating psychiatric patients’ disorders or other sources of suffering, as well as therapeutic and informational meetings with families, staff adamantly try to prevent patients from abruptly or impulsively terminating treatment. The guidelines are helpful in delineating poor prognostic conditions, under which dialysis initiation is inappropriate: for example, in an 80-year-old amputee with an acute myocardial infarct.
In the lower-right quadrant, the next category consists of parasuicide—deaths in which there is neither an intention to die nor collaborative decision-making. In dialysis patients whose anephric state demands exquisite attention to diet, medications, and dialysis regimens, parasuicidal behavior is largely synonymous with noncompliance. The vast majority of Abram’s "suicide" cases were engaged in lethal noncompliance, including the shortening or skipping of dialysis sessions, poor dietary adherence, and not taking all of their medications.27–29 Jared’s case exemplifies this category.
Continuing along to the lower-left quadrant are deaths that occur unexpectedly in the course of collaborative medical treatment. Unanticipated, naturally-occurring deaths (if the end of a machine-dependent existence can be considered so) are those judged to result primarily from organ failure (e.g., myocardial infarction) or, more rarely, from such medical complications of dialysis as hyperkalemia. Deaths take place despite the continuation of dialysis treatment and the cooperation of the patient and social milieu in trying to maximally prolong life. Despite the fact that these deaths are somewhat predictable with the use of modern prognostic systems, many come as a surprise, unanticipated by patients and families. Nephrology traditionally emphasizes the life-saving qualities of renal-replacement therapies, and patients, family, and staff collude in denying the omnipresence of death. The low rates of patient completion of advance directives and referral to hospice or palliative care services exemplify this denial.30
The final quadrant on the upper-left of the grid represents deaths that occur after withdrawing or withholding treatment when the achievement of an acceptable quality of ongoing life is considered futile. The decision to terminate treatment is made collaboratively with members of the patient’s social network, who freely acknowledge that death will ensue. John Kelly, the man whose story opens this article, epitomizes such a process. Also in the fourth quadrant is the small number of deaths that follow assisted-dying. It is impossible to collect national data on the prevalence of this phenomenon. The term includes both voluntary euthanasia (which is illegal in the United States) and physician-assisted suicide (which is presently legal only in Oregon, and now in Montana and Washington state, where voters recently endorsed it in the 2008 election), in which the physician gives the patient a prescription for a lethal amount of medication after he or she has gone through a protocol confirming that he or she is making a free and competent decision to hasten death. Neither method of assisted dying should be confused with withdrawal or withholding of life-support treatments.
The fourth quadrant similarly includes anticipated deaths among patients who wish to continue dialysis. Some of these individuals will prefer to also receive active palliative care. In these cases, the imminence of death is acknowledged, and the treatment shifts from aggressive, life-sustaining activities to comfort-care measures, with support from the social network.
"Esther Konigsberg," a 65-year-old married woman with polycystic kidney disease and renal failure, had been receiving dialysis for the last 3 years when she was diagnosed with an aggressive breast cancer. Despite intensive chemotherapy, the cancer had metastasized to her lungs and spine. Suffering with dyspnea and excruciating bone pain, she accepted that her death was inevitable but refused to discontinue dialysis. As Orthodox Jews, she and her family interpreted treatment-withdrawal as slow-motion suicide. Hospice services were considered, but were not involved. With the oncologist’s encouragement, she and her husband agreed to an intravenous morphine drip titrated to pain relief, knowing that it could hasten her death. She continued dialysis, but succumbed 2 days later.
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CONCLUSION
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Using the example of deaths occurring among CKD patients, we have described a model that incorporates current ideas about suicide and parasuicide to more precisely characterize complex end-of-life decisions. We believe that this deceptively simple model will be practical and can be readily taught to physicians of all specialties who work with end-of-life patients. Although it focuses on CKD patients who have the mental capacity to participate in medical care, it is also applicable to individuals with other disorders or their surrogates. The model examines the individual’s intentions with respect to dying and considers the involvement of social networks in endorsing or facilitating actions that precede death.
Although most people do everything in their power to remain alive, significant numbers of patients reach a point where they request that treatment be withheld, modified, or withdrawn; although these actions hasten death, they do not necessarily reflect psychopathology. In our society, people may make autonomous choices about how they wish to live and how they prefer to end their lives.31 Accordingly, such behaviors should not be reflexively opposed by physicians. On the other hand, some patients sabotage, interrupt, or abruptly terminate treatment for psychopathological reasons.
Although unequivocal data are lacking, it is likely that more patients inadvertently die from self-neglect and/or noncompliance than as a result of clear decisions to terminate or not-initiate treatment. This theoretical framework is constructed in part to assist clinicians in determining when to assist or oppose death-hastening behaviors. One of its secondary goals is to encourage and promote the use of more intensive psychosocial interventions and psychiatric collaboration in the behavioral management of noncompliant patients. Only rudimentary efforts have been directed at achieving this goal.32
There are limitations to the model that should be acknowledged. For example, the grid presently uses two axes to define requests and behaviors, but it could be fine-tuned or possibly improved with the addition of others. This would be necessary for cases involving patients who lack the capacity to make decisions on their own behalf or those whose judgment is clouded by comorbid depression or psychosis. The development of methods for scoring the lethality of a patient’s intent or the degree of social sanctioning of a request could permit empirical testing of the model, but this admittedly presents methodological challenges. Also, deaths may resist this "pigeonholing;" that is, withdrawal of life-support can be carefully planned with the full cooperation of family and staff, or it can take place amid unremitting conflict and controversy. To paraphrase Gertrude Stein, until now the authors have been content with the characterization that a death is a death is a death. In the 21st century, however, the field of medicine must actively decipher whether certain treatments serve to preserve "life worth living" or function instead to prolong suffering during dying.33 If they are to successfully navigate between the Scylla of excessive and the Charybdis of neglectful medical care, modern clinicians require both ethical astuteness and more than a modicum of psychological sophistication.34
Contemporary medical practitioners can benefit from guidelines to help ensure that when they acquiesce to requests to facilitate dying they are not abetting suicide or committing homicide.35 Maguire predicted this complexity over 30 years ago, when he said, "Death has lost its medical and moral simplicity. [It] now is a process, not a moment, and [we] have the means to extend or shorten that process."36 Societal criteria for suicide will inevitably change, but at this juncture in American medicine, patients who wish to stop life-support treatments are not committing suicide.
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ACKNOWLEDGMENTS
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The authors thank Adam Mirot, M.D. for his suggestions.
This work was funded by a grant from the American Foundation for Suicide Prevention.
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REFERENCES
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- Cohen L, Germain M, Poppel D: Practical considerations in dialysis-withdrawal: "to have the option is a blessing." J Am Med Rec Assoc 2003; 289:2113–2119[CrossRef]
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- Paris J: To feed or not to feed: Terri Schiavo and the use of artificial nutrition and fluids. South Med J 2005; 98:757–758[CrossRef][Medline]
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- Grey W: Right to die or duty to live? the problem of euthanasia. J Appl Philos 1999; 16:19–32[Medline]
- Hershenov D: The problematic role of "irreversibility" in the definition of death. Bioethics 2003; 17:89–100[CrossRef][Medline]
- O’Carroll P, Berman A, Maris R, et al: Beyond the Tower of Babel: a nomenclature for suicidology. Suicide Life Threat Behav 1996; 26:237–252[Medline]
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- Szasz T: Fatal Freedom: The Ethics and Politics of Suicide. Syracuse, NY, Syracuse University Press, 2002
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- Abram H: Repetitive dialysis, in Massachusetts General Hospital Handbook of General Hospital Psychiatry. Saint Louis, MO, CV Mosby Company, 1978
- Neu S, Kjellstrand C: Stopping long-term dialysis: an empirical study of withdrawal of life-supporting treatment. N Engl J Med 1986; 314:14–20[Abstract]
- McKegney F, Lange P: The decision to no longer live on chronic hemodialysis. Am J Psychiatry 1971; 128:47–53[Abstract/Free Full Text]
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- ESRD Network of New England 2002: The 2001 Annual Report to the Centers for Medicare and Medicaid Services. New Haven, CT, Tyco Printers, 2001, pp 60-63
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- Moss A: ESRD Workgroup Members: ESRD Workgroup Final Report Summary on End-of-Life Care: recommendations to the field. Nephrol Nurs J 2003; 30:59–63[Medline]
- Moss A: RPA and ASN Working Group: A new clinical practice guideline on initiation and withdrawal of dialysis that makes explicit the role of palliative medicine. J Palliat Med 2000; 3:253–260[CrossRef][Medline]
- Kimmel P, Peterson R, Wihs K, et al: Psychosocial factors, behavioral compliance, and survival in urban hemodialysis patients. Kidney Int 1998; 54:245–254[Medline]
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- Cohen L: Renal disease, in Textbook of Consultation-Liaison Psychiatry: Psychiatry in the Medically Ill. Edited by Rundell W. Washington, DC, American Psychiatric Press, 2002, pp 537-562
- Cohen L: A medical revolution in death-hastening decisions. Palliat Support Care 2003; 1:377–379[Medline]
- Hendin H: Seduced by Death: Doctors, Patients, and The Dutch Cure. New York, Norton, 1997
- Kjellstrand C, Dossetor J: Introduction: dialyzers and transplanters are the bioethical point-men of modern medicine, in Ethical Problems in Dialysis and Transplantation. Edited by Kjellstrand C, Dossetor J. Dordrecht, The Netherlands, Kluwer Academic Publishers, 1992
- Maguire D: The freedom to die. Commonweal 1972; 96:423–428
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ABSTRACT
INTRODUCTION
