Suicide Risk and Pain in Cancer and AIDS Patients

William Breitbart

Psychiatry Service and Pain Service, Department of Neurology, Memorial Sloan-Kettering Cancer Center, New York, New York 10021
 

Jerzy Kosinski, the Polish novelist and holocaust survivor, committed suicide in May 1991. Like other individuals suffering with chronic medical illnesses, he chose suicide as a means of controlling the course of his disease and the circumstances of his death. ``I am not a suicide freak, but I want to be free,'' Kosinski told an interviewer in 1979. ``If I ever have an accident or a terminal disease that would affect my mind or body, I will end it.'' These sentiments are shared by a significant segment of our society. The movement advocating ``death with dignity'' and autonomy for patients regarding how they die has been growing in this country. While Kosinski suffered with a cardiac condition, these issues are particularly compelling for those individuals with life-threatening illnesses such as cancer or AIDS. Perhaps of all medical conditions, cancer and AIDS are associated with the highest rates of suicide and of requests for hastened death (5,23,33,39,40). The movement to legalize euthanasia and the debate over physician-assisted suicide sparked by Derek Humphry's Final Exit (29a), have both centered on the plight of dying patients with cancer or acquired immunodeficiency syndrome (AIDS). Information that can shed light on our understanding of the factors that contribute to suicidal ideation, requests for hastened death, or suicide in cancer and AIDS patients will contribute greatly not only to the societal debate over these issues, but directly to humane patient care.

Uncontrolled pain has been recognized as an important contributing factor to suicide in cancer and AIDS patients (5,6,8,21,22). Persistent pain and terminal illness are the most common reasons for requests for euthanasia or physician-assisted suicide (28,63). Clinicians who specialize in pain management in cancer or AIDS settings will be confronted with these issues. The goal of this chapter is to provide the clinician with a factual framework on which to base an approach to managing cancer or AIDS patients with pain who are at risk of suicide or who request a hastened death. What follows is a review of the current research data on suicide, suicidal ideation, and suicide risk factors in cancer and AIDS patients, with particular focus on the roles of pain and psychiatric comorbidity. Additionally, a discussion of the ethical dilemmas presented by euthanasia and physician-assisted suicide is followed by an outline of principles in the management of suicidal cancer or AIDS patients.

The information presented in this chapter suggests that danger lies in the premature assumption that suicidal ideation or a request to hasten death in a cancer or AIDS patient represents a ``rational act'' unencumbered by physical symptom distress or psychiatric comorbidity. Clearly, there are suicides that occur in this population that many would view as rational expressions of personal autonomy; however, they represent only a small minority of suicides in cancer or AIDS patients. The vast majority of cancer or AIDS patients, particularly those with advanced disease, who express suicidal ideation or request a hastened death do so while suffering with unrecognized and untreated psychiatric disturbances (depression, confusional states), and poorly controlled physical symptoms (pain).

SUICIDE AND CANCER

Cancer patients are at increased risk of suicide relative to the general population. Recent studies (5,23,39) suggest that although only small numbers of cancer patients commit suicide, their relative risk of suicide is twice that of the general population. The frequency of unreported or undetected suicide, and the degree to which noncompliance or treatment refusal in specific cases may or may not represent suicide, are unknown, suggesting that the true incidence of suicide in cancer patients is likely underestimated. Men with cancer are clearly at increased risk, while studies indicate mixed results as far as women's risk of suicide in the cancer setting. Older patients in the sixth and seventh decade of life seem to be particularly vulnerable (5,21,39,65). Individuals with oral, pharyngeal, and lung cancers seem to be at increased risk of suicide compared to those with cancers of different types or sites (21,65). In an eight-year study of male suicides in VA hospitals, 50% had cancer of the larynx, tongue, or lung. Cancers of these sites are often associated with heavy and prolonged use of tobacco and alcohol, and also have profound impact due to impaired function and facial disfigurement. Gastrointestinal, urogenital, and breast cancers have been reported to increase the risk of suicide (1,5,39).

RISK FACTORS IN CANCER SUICIDE

Identifying the cancer patient who is at increased risk for suicide is the first step in prevention and allows for appropriate psychosocial interventions to be initiated. Factors associated with increased risk of suicide in patients with cancer (6,8) are listed in Table 1. These factors should be incorporated into the assessment of suicide potential and utilized as a framework for intervention in order to provide alternatives to suicide.
Chapter 4 Table 1: Cancer Suicide Vulnerability Factors



 
Advanced Illness, poor prognosis
Pain, uncontrolled
Depression, hopelessness
Delirium, disinhibition
Loss of control, helplessness 
Preexisting psychopathology
Prior suicide history, family history
Exhaustion, fatigue 
 Adapted from ref. 8


Cancer patients commit suicide most frequently in the advanced stages of disease (5,21,22,23,39). Eighty-six percent of suicides studied by Farberow et al. (22) occurred in the preterminal or terminal stages of illness, despite greatly reduced physical capacity. Poor prognosis and advanced illness usually go hand in hand, so it is not surprising that in a Swedish study, those who were expected to die within a matter of months were the most likely to commit suicide. Of 88 cancer suicides, 14 had an uncertain prognosis, and 45 had a poor prognosis (5). With advancing disease, the incidence of significant cancer pain increases. Pain itself is an important cancer suicide risk factor, and will be discussed in great detail later on in this chapter. Patients with advanced illness are at high risk, perhaps because they are most likely to have such cancer complications as pain, depression, delirium, and deficit symptoms that increase vulnerability to suicide.

Psychiatric disorders are frequently present in hospitalized cancer patients who are suicidal. A recent review of our psychiatric consultation data at Memorial Sloan-Kettering Cancer Center (MSKCC) showed that one-third of suicidal cancer patients had a major depression, about 20% suffered from a delirium, and 50% were diagnosed with an adjustment disorder with both anxious and depressed features at the time of evaluation (6,8). Depression is a factor in 50% of all suicides. Those suffering from depression are at 25 times greater risk of suicide than the general population (27,52). The role depression plays in cancer suicide is equally significant. Approximately 25% of all cancer patients experience severe depressive symptoms, with about 6% fulfilling DSM-III criteria for the diagnosis of major depression (12,16,50). Among those with advanced illness and progressively impaired physical function, symptoms of severe depression rise to 77% (12). Hopelessness is a key variable that links depression and suicide in the general population. Furthermore, hopelessness is a significantly better predictor of completed suicide than is depression alone (4,34). With the typical cancer suicide being characterized by advanced illness and poor prognosis, hopelessness is an all too common experience. In Scandinavia, the highest incidence of suicide was found in cancer patients who were offered no further treatment and no further contact with the health care system (5,39). Being left to face illness alone creates a sense of isolation and abandonment that is critical to the development of hopelessness. The prevalence of organic mental disorders (primarily delirium) among cancer patients requiring psychiatric consultation has been found to range from 25% to 40% (16,37) and as high as 85% during the terminal stages of illness (41). While earlier work (22) suggested that delirium was a protective factor in regard to cancer suicide, our clinical experience has found these confusional states to be a major contributing factor in impulsive suicide attempts, especially in the hospital setting.

Loss of control and a sense of helplessness in the face of cancer are important factors in suicide vulnerability. Control refers to both the helplessness induced by symptoms or deficits due to cancer or its treatments, as well as the excessive need on the part of some patients to be in control of all aspects of living or dying. Farberow noted that patients who were accepting and adaptable were much less likely to commit suicide than cancer patients who exhibited a need to be in control of even the most minute details of their care (22). This controlling trait may be prominent in some patients and cause distress with little provocation. However, it is not uncommon for cancer-related events to induce a great sense of helplessness even in those who are not typically controlling individuals. Impairments or deficits induced by cancer or cancer treatments include loss of mobility, paraplegia, loss of bowel and bladder function, amputation, aphonia, sensory loss, and inability to eat or swallow. Most distressing to patients is the sense that they are losing control of their minds, especially when they are confused or sedated by medications. The risk of suicide is increased in cancer patients with such physical impairments, especially when accompanied by psychological distress and disturbed interpersonal relationships due to these deficit factors (21).

Fatigue, in the form of exhaustion of physical, emotional, spiritual, financial, familial, communal, and other resources, increases risk of suicide in the cancer patient (6,8). Cancer is now often a chronic illness. Increased survival is accompanied by increased numbers of hospitalizations, complications, and expenses. Symptom control thus becomes a prolonged process with frequent advances and setbacks. The dying process also can become extremely long and arduous for all concerned. It is not uncommon for both family members and health care providers to withdraw prematurely from the cancer patient under these circumstances. A suicidal patient can thus feel even more isolated and abandoned. The presence of a strong support system for the patient that may act as an external control of suicidal behavior reduces risk of cancer suicide significantly.

Holland (29) advises that it is extremely rare for cancer patients to commit suicide without some degree of premorbid psychopathology that places them at increased risk. Farberow (22) described a large group of cancer suicides as the ``dependent dissatisfied.'' These patients were immature, demanding, complaining, irritable, hostile, and difficult ward management problems. Staff often felt manipulated by these patients and became irritable due to what they saw as excessive demands for attention. Suicide attempts or threats were often seen as ``hysterical'' or manipulative. Our consultation data on suicidal cancer patients showed that half had a diagnosable personality disorder (6,8).

The frequency of suicide attempts in cancer patients has not been well studied. While the frequency of suicidal thinking in the cancer setting may be in question, its relationship to suicide attempts or completions is clearer. Bolund (5) reports that fully half of all Swedish cancer suicides had previously conveyed suicidal thoughts or plans to their relatives. In addition, many of the completed cancer suicides had been preceded by an attempted suicide. This is consistent with the statistics of suicide in general, which show that a previous suicide attempt greatly increases the risk of completed suicide (19,43). A family history of suicide is of increasing relevance in assessing suicide risk.

Suicidal Ideation in Cancer Patients

Chapter 4 Table 2: Suicidal ideation and cancer prevalence studies





 
Study
Prevalence %
Setting
Achte and Vaukhonen (1971) <1 Ambulatory breast cancer
Silberfarb et al. (1980) <1 Ambulatory mixed cancer types
Breitbart (1987) 8.6 Psychiatric consultations, hospitalized cancer patients
Pasacreta and Massie (1990) 11 Nurse reports, hospitalized 
cancer patients
Breitbart et al. (1992) 16.3 Ambulatory and hospitalized patients with cancer pain
Brown et al. (1986) 20 Pallitive Care Unit
 

Thoughts of suicide probably occur quite frequently, particularly in the setting of advanced cancer, and seem to act as a steam valve for feelings often expressed by patients as ``If it gets too bad, I always have a way out.'' It has been our experience in working with cancer patients that, once a trusting and safe relationship develops, patients almost universally reveal that they have had occasionally persistent thoughts of suicide as a means of escaping the threat of being overwhelmed by cancer. Recent published reports, however, suggest that suicidal ideation is relatively infrequent in cancer and is limited to those with more advanced disease, those who are hospitalized or in palliative care settings, or those who have pain or are significantly depressed (see Table 2). Any discrepancy between clinical impression and research conclusions may be due to the limitations of the research interview in eliciting report of suicidal ideation. Silberfarb et al. (59) found that only three of 146 breast cancer patients with local disease receiving ambulatory care reported suicidal thoughts to a research interviewer, while none of the 100 cancer patients interviewed in a Finnish study expressed suicidal thoughts (1). At Memorial Hospital, suicide risk evaluation accounted for 8.6% of psychiatric consultations in 1986, usually requested by staff in response to a patient verbalizing suicidal wishes (6,8). Three-quarters of those evaluated for suicide wishes (n=71) in fact were found to be actively suicidal, requiring that steps be taken to assure their safety. The vast majority of those hospitalized cancer patients with suicidal ideation had serious psychiatric disorders that had not been recognized or treated. One-half of the group had an adjustment disorder, 30% had a major depression, and approximately 20% had a delirium at the time of their psychiatric evaluation. With appropriate psychiatric interventions, suicidal ideation disappeared or diminished significantly in this group of patients. Pasacreta and Massie (47) distributed a psychosocial survey to the entire inpatient nursing staff at Memorial Hospital in October 1987. Nurses were asked a number of questions including ``Has your patient expressed suicidal ideas or wishes to you in the past week?'' Eleven percent of the 550 hospitalized cancer patients at Memorial Hospital had expressed suicidal ideation to their nurse. We recently studied 196 cancer patients with pain at Memorial Hospital and found that suicidal ideation occurred in 17% of the study population (8). A study conducted in the Palliative Care Unit at St. Boniface Hospice in Winnipeg, Canada demonstrated that 10 of 44 terminally ill cancer patients were suicidal or desired an early death, and all 10 were suffering from clinical depression (11).

CANCER PAIN AND SUICIDE RISK

Uncontrolled pain is a major risk factor for suicide and suicidal ideation in cancer patients (5,6,8,21,22). Pain is a leading cause of morbidity in the cancer patient. Fifteen percent of patients with nonmetastatic cancer have significant pain, whereas 60% to 90% of patients with advanced cancer report debilitating pain (13,15,62). The public perceives cancer as an extremely painful disease relative to other medical conditions. Sixty-nine percent indicated, in a public opinion survey, that cancer pain can get so bad that a person might consider suicide (36). Physicians who work with cancer patients report that persistent or uncontrolled pain accounts for the majority of requests they receive for physician-assisted suicide or euthanasia. The vast majority of cancer suicides, in several studies, occur in patients with severe pain that was inadequately controlled or tolerated poorly (5,21,22). Pain plays an important role in vulnerability to suicide; however, associated psychological distress and mood disturbance seem to be essential cofactors in raising the risk of cancer suicide. Cancer patients with pain are twice as likely to suffer from a psychiatric complication (anxiety or depressive disorder) as those without pain (16). Pain has adverse effects on a cancer patient's quality of life and sense of control. Pain interferes with a patient's ability to receive support from family and others. Cancer patients with advanced cancer and pain are especially vulnerable to suicide due to the increased likelihood of the presence of multiple risk factors such as depression, delirium, loss of control, and hopelessness.

The role of cancer pain in suicidal ideation is complex. There is evidence to suggest that it is not merely the extent or degree of pain that plays a role in cancer-related suicidal ideation, but rather the suffering experienced as part of one's psychological reactions to cancer pain, such as depression and hopelessness. Studies at MSKCC examined the relationship of cancer pain to suicidal ideation (6,8). In a series of 71 cancer patients who had suicidal ideation with serious intent, significant pain was a factor in only 30% of cases. In striking contrast, virtually all 71 suicidal cancer patients had a psychiatric disorder (mood disturbance or organic mental disorder) at the time of evaluation (6). We also studied 196 cancer pain patients involved in ongoing research protocols of the MSKCC Pain and Psychiatry Services (8). Suicidal ideation occurred in 17% of the study population, with the majority reporting suicidal ideation without intent to act. Interestingly, in this population of cancer patients who all had significant pain (VAS pain intensity mean score of 5.4), suicidal ideation was not directly related to pain intensity, but rather was strongly related to the degree of depression and mood disturbance (as measured by the Beck Depression Inventory and the Memorial Pain Assessment Card=mVisual Analog Scale Mood Scale). Duration of pain also did not predict suicidal ideation. Pain was related to suicidal ideation indirectly in that patients' perception of poor pain relief was associated with suicidal ideation. Perceptions of pain relief may have more to do with aspects of hopelessness than pain itself.

SUICIDE AND AIDS

There is increased risk of suicide in persons with AIDS (33,40). A study of men with AIDS in New York City (40) demonstrated a relative risk of suicide 36 times greater than that of males in the general population. Many of these patients had advanced AIDS with Kaposi's sarcoma and other potentially painful conditions. However, the role of pain in contributing to increased risk of suicide was not specifically examined. Kizer et al. (33) examined California death certificates for the year 1986 and found that the relative suicide rate of men with AIDS aged 20 to 39 years was 21 times the rate of men without AIDS. At the time of these studies, AIDS was primarily seen in the male homosexual population, so it is not surprising that all the suicides reported occurred in males. AIDS patients who commit suicide generally do so within 9 months of diagnosis. Methods of suicide in AIDS tend to be similar to those used in cancer patients and include overdosage of prescribed medications, hanging, or jumping (40). Rundell et al. (55) reported a 16 to 24 times higher rate of suicide attempts in HIV-infected Air Force personnel than in the Air Force in general.

RISK FACTORS IN AIDS SUICIDE

Chapter 4 Table 3: Risk factors in AIDS-related suicide



 
Organic mental disorder: delirium, dementia
Depression: guilt, hopelessness, bereavement
Substance abuse: intravenous drug use, cocaine, alcohol
Preexisting psychopathology: personality disorder, avoidance coping
Absence of social support: isolation
Inadequate pre- and post-HIV test counseling
Suicide history: attempts, expression of thoughts
Disease status: stages II, III/AIDS (IV)
Pain: functional interference

Factors related to increased risk of suicide with HIV infection are listed in Table 3. Organic mental disorders, particularly delirium and dementia, occur with increased frequency in AIDS patients as disease advances. The majority of suicidal patients with Kaposi's sarcoma and AIDS, who were evaluated by the Psychiatry Service at Memorial Hospital, had prominent signs of delirium often superimposed on an AIDS-associated dementia (6,8). Treatment of delirium in these patients often results in resolution of suicidal ideation or behavior. Depression is as important a factor in AIDS-related suicide as it is in suicide in general. Marzuk et al. (40) reported that 50% of AIDS patients who committed suicide were significantly depressed, and 40% saw a psychiatrist within four days of committing suicide. One-third of suicidal AIDS patients evaluated at Memorial Hospital were suffering from an undiagnosed major depression (6,8). Perry and his colleagues (49) reported that suicidal ideation in HIV seropositives was primarily a function of concomitant depression. Hopelessness is a key variable linking depression to suicide. Guilt about past behavior, multiple bereavements, isolation from family and friends, and hopelessness are common factors in many AIDS-related suicides (24). Rabkin et al. (53) showed that absence of social support and depression correlated highly with hopelessness in HIV-infected persons. Gutierrez and colleagues (26) found that suicidal HIV-infected men tended to have less social support, and relied more heavily on avoidance as a coping strategy, than nonsuicidal HIV-infected men. Risk factors for suicide attempt in HIV-seropositive individuals in the military include social isolation, perceived lack of social support, adjustment disorder, personality disorder, substance/alcohol abuse, past history of depression, and HIV-related interpersonal or occupational problems (55). Expression of suicidal thoughts or intent will often predate a suicide attempt in patients with AIDS (24). In the Marzuk et al. (40) study, 25% of AIDS patients who committed suicide had made prior suicide attempts. Frierson and Lippman (24) believe AIDS patients in remission are the most likely to summon the necessary energy to complete suicide. Clearly, however, even debilitated patients with advanced AIDS have successfully committed suicide. Disease-related factors, such as pain related to AIDS, and other physical symptoms probably play a role in suicide, although this has not been studied as of yet. Substance abuse and preexisting psychopathology heighten the risk of suicide with HIV infection. Alcoholics and substance abusers generally have a rate of suicide 10 to 20 times higher than the general population. Clinicians must be alert to the increased risk of suicide in AIDS patients and promote early intervention for such psychiatric complications as delirium, depression, and social isolation.

SUICIDAL IDEATION IN AIDS PATIENTS

Suicidal ideation, either lifetime prevalence (Table 4) or current ideation (Table 5) is also dramatically higher in HIV-infected individuals than in the general population or even in the cancer population (2,10,18,26,45). In HIV-seropositive populations of homosexual males, alcohol or substance abusers, and psychiatric outpatients, prevalence rates of lifetime suicidal thoughts ranged from 50% to 82% (2,18,26,45). Interestingly, HIV-negative individuals in the same at-risk populations had similar rates of suicidal ideation, thus suggesting that it is not HIV status per se that accounts for such high rates of suicidal ideation, but rather the psychiatric morbidity found in these at-risk groups. Drexler et al. (18) found comparable rates of suicidal thoughts and behaviors in HIV-infected individuals and alcoholics. In a psychiatric clinic devoted to an HIV-infected or at-risk population made up primarily of intravenous drug users and their sexual partners, researchers found extremely high rates of self-reported suicidal thoughts and attempts (45). Approximately 80% of asymptomatic HIV seropositives and those with AIDS-related complex had a history of suicidal thoughts and half had made suicide attempts during their lifetimes. Atkinson and his colleagues (2) demonstrated that lifetime thoughts of suicide and suicide attempts occurred with greater frequency in homosexual men compared to heterosexual controls. Interestingly, there was no difference in frequency of suicidal thoughts or attempts among HIV-infected versus uninfected homosexual men. It has been feared that many individuals would become suicidal upon notification of seropositivity, and in fact several cases have been reported of suicide shortly after notification, without adequate counseling (24). Perry et al. (49) reported that current suicidal ideation is uncommon in the HIV-testing setting when intensive pretest and posttest counseling is offered. In their study, suicidal ideation occurred equally among those who were seropositive or seronegative, and was primarily related to levels of mood disturbance rather than HIV-antibody status. Upon entry into the study (prior to notification of serostatus), rates of current suicidal ideation for the seronegative and seropositive groups were 30.06% and 28.6%, respectively. After notification of seronegativity, rates of suicidal ideation fell to 17.1% (1 week later) and 15.9% (after 2 months). Suicidal ideation stayed at pretest levels (27.1%) 1 week after notification of seropositivity, but fell to 16% 2 months later, a level quite comparable to the seronegatives. In addition, the stage of HIV illness and the presence of such physical and psychiatric symptoms as pain and depression may affect rates of current suicidal ideation (7,10,17). This will be discussed in detail in the next section of this chapter.

Chapter 4 Table 4: Suicidal ideation and AIDS: lifetime suicidal thoughts/attempts

Study Population   %
Atkinson et al. (1990)   Homosexual men 

 

 
   Suicidal thoughts CDCII-III   50
  CDCIV   55
  HIV-   62
  ECA   9
   Attempts CDCII-III   6
  CDCIV   9
  HIV-   9
  ECA   1
Gutierrez et al. (1990)   Homosexual men, miliary  
  HIV+   50
  HIV- at risk   55
  HIV+   21
  HIV- at risk   20
Orr et al. (1990)   HIV Psychiatric clinic  
  AIDS   54
  ARC   82
  HIV+   78
  HIV-   68
  AIDS   26
  ARC   47
  HIV+   51
  HIV-   32
CDC II-III, Centers for Disease Control HIV-staging class II or III (HIV;pl, pre-AIDS); CDC IV, CDC HIV-staging class IV (AIDS); ECA, epidemiological catchment area study data on heterosexual men; ARC, AIDS-related complex, coincides with CDC class III; HIV+ seropositive for HIV; HIV-, seronegative for HIV. 

PAIN IN AIDS AND SUICIDE RISK

According to several preliminary clinical studies (9,35,44), pain is a significant problem for patients with HIV infection and is associated with psychological and functional morbidity. Clinicians have neglected pain management in AIDS patients, focusing instead on treating life-threatening opportunistic infections, cancers, and neuropsychiatric syndromes such as AIDS dementia complex. There are few systematic studies that examine the prevalence of pain, describe specific pain syndromes, or examine the relationship of pain experience and psychological factors in the AIDS population (7). One recent retrospective chart review of hospitalized patients with AIDS revealed that more than 50% of patients required treatment for pain, with pain being the presenting complaint in 30% (second only to fever) (37). In this study, chest pain occurred in 22%, headache in 13%, oral cavity pain in 11%, abdominal pain in 9%, and peripheral neuropathy in 6%. A second retrospective review of pain in an AIDS population reported abdominal pain, peripheral neuropathy, and Kaposi's sarcoma as the three most frequent pain problems, affecting 15% of hospitalized AIDS patients (44). Schofferman and Brody (56) described pain in patients with far advanced AIDS. Fifty-three percent of patients surveyed had pain, most commonly peripheral neuropathy, abdominal pain, headaches, and Kaposi's sarcoma. At MSKCC (9) we examined the prevalence and characteristics of pain in a population of HIV-infected persons receiving medical care in an ambulatory setting. Thirty-eight percent of ambulatory HIV-infected patients reported significant pain. Patients had an average of two or more pains at any given time. Painful sensory neuropathy made up 50% of pain diagnoses. Kaposi's sarcoma resulted in lower extremity pain in an additional 45% of patients. Those with pain were more likely to have advanced HIV disease (i.e., CDC class IV AIDS) with low T4 cell counts, history of multiple opportunistic infections, and lower Karnofsky Performance Scores (less able to function independently). Table 6 describes a classification system of pain syndromes seen in adults with HIV disease. HIV-related peripheral neuropathy is an often painful condition, affecting up to 30% of people with AIDS (14,38,46,61), and is characterized by a sensation of burning, numbness, or pins and needles. It is important to note, however, that several antiviral drugs like dideoxycytidine (DDI) and dideoxyinosine (DDC), chemotherapy agents used to treat Kaposi's sarcoma (vincristine), as well as Dilantin and isoniazid (INH), can cause painful peripheral neuropathy. Colony-stimulating factor (GM-CSF) can cause transient bone pain. Barone et al. (3) observed abdominal pain in 12% of AIDS patients. Rabeneck et al. (52) reported 16 cases of painful swallowing due to esophageal ulcers in HIV-infected men. Reiter's syndrome, reactive arthritis, and polymyositis are other painful conditions reported to occur in early HIV infection (32). Pain has a profound impact on the level of emotional distress, and psychological factors such as anxiety and depression can intensify pain. In our study of the impact of pain on ambulatory HIV-infected patients (9), depression was significantly correlated with the presence of pain. HIV-infected patients with pain were more functionally impaired, and this was highly correlated to levels of pain intensity and depression. Those who felt that pain represented a threat to their health reported more intense pain than those who did not see pain as a threat. Patients with pain were more likely to be unemployed or disabled and reported less social support.
Chapter 4 Table 5: Suicidal ideation and AIDS: current suicidal ideation
 
 
Study Setting   %
Orr et al. (1990)   HIV Psychiatric clinic  
  AIDS   11
  ARC   26
  HIV+ ASX   31
  HIV-   38
Drexler et al (1990)   Military, inpatient alcohol unit  
Suicide an option over next year HIV+   16.7
  HIV-   11.1
Suicide plan HIV+   3.6 
  HIV-   0 
Perry et al. (1990)   HIV testing   
  Pretest suicidal ideation HIV+   28.6
   (BDI item 9) HIV-   30.6 
  2 Months Posttest suicidal ideation HIV+   16.3 
   (BDI item 9) HIV-   15.9 
Breitbart et al. (1990)   Ambulatory HIV medical clinic   
  current suicidal ideation All HIV+   26 
   (BDI item 9) HIV+ no pain   20 
  HIV+ pain   40 
AIDS, CDC class IV of HIV staging; ARC, AIDS-related complex, same as CDC class III; HIV+, seropositive for HIV; HIV-, seronegative for HIV; HIV+ ASX, HIV seropositive, asymptomatic, CDC class II. 
We also examined the prevalence of suicidal ideation in this ambulatory HIV-infected population and examined the relationship between suicidal ideation, depression, and pain (10). Suicidal ideation in ambulatory HIV-infected patients was found to be highly correlated with the presence of pain, depressed mood (as measured by the Beck Depression Inventory), and low T4 lymphocyte counts. Whereas 20% of ambulatory HIV-infected patients without pain reported suicidal thoughts, more than 40% of those with pain reported suicidal ideation. Only two subjects in the sample (n=110) reported suicidal intent. One of these two men was in the pain group; however, both scored quite highly on measures of depression. No correlations were observed between suicidal ideation and pain intensity or pain relief. The mean visual analogue scale measure of pain intensity for the group overall was 49 mm (range 5-100 mm), thus falling predominantly in the moderate range. As with cancer pain patients, suicidal ideation in AIDS patients with pain is more likely to be related to a concomitant mood disturbance (depression) than to the intensity of pain experienced. The presence of pain, depressed mood, low T4 lymphocyte counts and a diagnosis of AIDS increased rates of suicidal ideation.
Chapter 4 Table 6: Pain syndromes in AIDS patients



Pain related to AIDS
HIV neuropathy
HIV myelopathy
Kaposi's sarcoma
Secondary infections
Organomegaly
Myositis
Pain related to AIDS therapy
Antivirals (AZT, DDI, DDC)
Biological modifiers (GM-CSF)
Chemotherapy (vincristine)
Radiation
Surgery
Procedures
Pain unrelated to AIDS
Disk disease
Diabetic neuropathy

Euthanasia/Physician-Assisted Suicide

In a 1988 survey of California physicians, 57% of those responding reported that they have been asked by terminally ill patients to hasten death. Persistent pain and terminal illness were the primary reasons for those requests for physician-assisted euthanasia (28). What is the appropriate response to such a request? The clinician treating cancer or AIDS patients faces a dilemma when confronting the issue of assisted suicide or euthanasia. From the medical perspective, professional training reinforces the view of suicide as a manifestation of psychiatric disturbance to be prevented at all costs. However, from the philosophical perspective, many in our society view suicide in those who face the distress of an often fatal and painful disease like cancer or AIDS as ``rational'' and a means to regain control and maintain a ``dignified death.'' An internal debate thus often takes place within the health care professional that is not dissimilar to the public debate that surrounds celebrated cases in which the rights of patients to terminate life-sustaining measures or receive active euthanasia are at issue.

The term euthanasia encompasses a number of concepts, all of which have become controversial but important issues in the care of terminally ill patients. Active euthanasia refers to the intentional termination of a patient's life by a physician. Physician-assisted suicide is the provision by a physician of the means by which patients can end their own lives. Passive euthanasia refers to the withholding or withdrawal of life-sustaining measures, and is viewed as acceptable in many societies (48). Active euthanasia and physician-assisted suicide, however, are perhaps the most intensely and bitterly debated issues in medical ethics today. Active euthanasia has been taking place in the Netherlands for a decade (17,63). Although still illegal, the active termination of a patient's life by a physician is tolerated under the conditions that: (i) the patient's consent is free, conscious, explicit, and persistent; (ii) the patient and physician agree that the suffering is intolerable; (iii) other measures for relief have been exhausted; (iv) a second physician concurs; and (v) these facts are documented. A best estimate is that 1.8% of deaths in the Netherlands are the result of euthanasia with physician involvement (63). Common reasons for requesting euthanasia include loss of dignity (57%), pain (46%), unworthy dying (sic) (46%), being dependent on others (33%), and tiredness of life (sic) (23%) (63). Recently, the states of California and Washington have considered initiatives that would allow for active euthanasia along the Netherlands model. The case of ``Debbie'' published in JAMA in 1988 forced a debate on active euthanasia in this country that is ongoing (20,25,30,31,60,64).

Physician-assisted suicide has also become a topic of public debate, following the dramatic case in 1990 of a woman with Alzheimer's disease who utilized Dr. Jack Kevorkian's ``suicide machine.'' Dr. Kevorkian was acquitted by a Michigan court of any wrongdoing. Dr. Timothy E. Quill, a physician who assisted a leukemia patient in committing suicide, was not indicted by a Rochester grand jury in July 1991. Dr. Quill's account of his participation in his patient's suicide was published in the March 7, 1991 issue of the New England Journal of Medicine (51) and sparked continued debate regarding the physician's role in aiding dying patients. In interviews after he published this article, Dr. Quill said he had decided to go public in order to present an alternative to Dr. Kevorkian's approach, using a machine in the death of a patient whom Dr. Kevorkian did not know well. In contrast to the Kevorkian case, Dr. Quill had been treating the patient with leukemia for 8 years and knew her quite well. In his article, Dr. Quill described the process that he and the patient undertook, exploring her choice to actively take her life. He also described recommending that the patient contact the Hemlock Society, and prescribing barbiturates for sleep one week later at the patient's request.

The Humane and Dignified Death Act, a proposed law that would free doctors from criminal and civil liability if they participated in voluntary active euthanasia, did not appear on the 1988 California ballot because the sponsoring group (Americans Against Human Suffering) barely failed to get the required number of signatures. That group, an affiliate organization of the national Hemlock Society, did, however, undertake a survey of California physicians as part of their efforts to build support for the act. The survey was quite revealing (28). Seventy percent of physicians who responded agreed that patients should have the option of active euthanasia in terminal illness. More than half of the physicians said that they would practice active voluntary euthanasia if it were legal. Twenty-three percent revealed that they already had practiced active euthanasia at least once in their careers. Of the 60% of physicians who indicated that they had been asked by patients with terminal illness to hasten death, nearly all agreed that such requests from patients can be described as ``rational.'' Public support for ``the right to die'' has been growing as well. Sixty-five to 85 percent of the general population support a change in the law to permit physicians to help patients die, and there is greater acceptance by the public of suicide when pain and suffering coexist with terminal illness.

Those of us who provide clinical care for cancer or AIDS patients with pain and advanced illness are sympathetic to the goals of symptom control and relief of suffering, but are also obviously influenced by those who view suicide or active voluntary euthanasia as rational alternatives for those already dying and in distress. Danger lies in the premature assumption that suicidal ideation or a request to hasten death in the cancer or AIDS patient represents a rational act that is unencumbered by psychiatric disturbance. Accepted criteria for ``rational suicide'' (57,58) include the following: (i) the person must have clear mental processes that are unimpaired by psychological illness or severe emotional distress, such as depression; (ii) the person must have a realistic assessment of the situation; and (iii) the motives for the decision of suicide are understandable to most uninvolved observers. Clearly there are suicides that occur in the cancer or AIDS setting that meet these criteria for rationality; however, a significant percentage, possibly the majority, do not, by virtue of the fact that significant psychiatric comorbidity exists. By reviewing the current research data on suicide in cancer and AIDS and the role of such factors as pain, depression, and delirium, we hope to provide a factual framework on which to base guidelines for managing this vulnerable group of patients.

The clinician who works in a cancer or AIDS setting should anticipate that the topic of euthanasia or physician-assisted suicide may arise with some patients and should be ready to respond in a fashion that is most consistent with his or her beliefs. One should be reminded, however, that euthanasia and assisted suicide are not legal in the United States. Many clinicians find it useful to explain to patients that, although they cannot participate in euthanasia or assisted suicide, they will aggressively and without limitation pursue pain control and comfort during all phases of illness, particularly the late terminal phases. It is also sometimes reassuring to explicitly explain that pain medications such as morphine will be used for pain control and comfort without limitation even to the point of complete sedation if necessary. Although many physicians do not feel comfortable prescribing medications to be used specifically for the purpose of suicide, most do feel comfortable prescribing pain medicines or sedatives for symptom control knowing full well that the patient has control over the use of these medicines in the home setting. Active and aggressive pursuit of maximal palliative care, focusing on both physical and psychological symptom distress, is the approach that best characterizes what most clinicians view as our obligation to terminally ill cancer and AIDS patients (64). Unfortunately, this does not always take place. Many argue that until quality palliative care is available to the majority of terminally ill patients, debate over euthanasia or assisted suicide is dangerous (48,64). Our society and the medical profession may someday come to believe that euthanasia or assisted suicide is proper and appropriate in selected cases. While debate over these issues is ongoing, it is helpful to keep the following in mind: (i) euthanasia and physician-assisted suicide remain illegal; (ii) these acts not only do away with the patient's suffering, they do away with the patient; and (iii) in agreeing to euthanize or assist a patient in suicide, one may be confirming the patient's sense that life has no more meaning or purpose, and this may be the wrong message to convey at such a vulnerable period in the patient's life. Finally, clinicians should be cautioned against falling into the trap of ``secret collusion'' with a patient regarding a request for euthanasia or assisted suicide. The doctor-patient relationship is more complex than most of us are often aware and is subject to powerfully intense emotional forces, particularly when the relationship has been long and the doctor's identification with the patient is strong. It is advisable to share the management of such cases with colleagues, particularly those with palliative care expertise or psychiatric expertise. When medical ethicists or medical ethics committees are available, it is also helpful to seek consultation from them in managing patients with whom euthanasia or assisted suicide has been raised as a serious issue.

MANAGEMENT OF THE SUICIDAL CANCER OR AIDS PATIENT

Assessment of suicide risk and appropriate intervention are critical (Table 7). Early and comprehensive psychiatric involvement with high-risk individuals can often avert suicide in the cancer or AIDS patient (19,24). Psychiatrists or other mental health professionals are often helpful in assessing the presence of complicated depression or other psychiatric factors. Diagnosing depression in cancer or AIDS patients, particularly in the late stages of illness, is difficult but possible, particularly if the assessment is made by a psychiatrist who is experienced in treating the medically ill. A careful evaluation includes a search for the meaning of suicidal thoughts, as well as an exploration of the seriousness of the risk. The clinician's ability to establish rapport and elicit a patient's thoughts are essential as he or she assesses history, degree of intent, and quality of internal and external controls. One must listen sympathetically, not appearing critical or stating that such thoughts are inappropriate. Allowing the patient to discuss suicidal thoughts often decreases the risk of suicide. The myth that asking about suicidal thoughts puts the idea in the patient's head is one that should be dispelled, especially in cancer (42). Patients often reconsider and reject the idea of suicide when the physician acknowledges the legitimacy of their option and the need to retain a sense of control over aspects of their death.
Chapter 4 Table 7: Evaluation of suicidal cancer or AIDS patient



Establish rapport with an empathic approach.
Obtain patient's understanding of illness and present symptoms.
Assess mental status (internal control).
Assess vulnerability variables, pain control.
Assess support system (external control).
Obtain history of prior emotional problems or psychiatric disorders.
Obtain family history.
Record prior suicide threats, attempts.
Assess suicidal thinking, intent, plans.
Evaluate need for one-to-one nurse in hospital or companion at home.
Formulate treatment plan, immediate and long term.
The suicide vulnerability factors (Tables 1 and 5) should be utilized as a guide to evaluation and management. Once the setting has been made secure, assessment of relevant mental status and adequacy of pain and symptom control can begin. Analgesics, neuroleptics, or antidepressant drugs should be utilized when appropriate to treat anxiety, agitation, psychosis, major depression, or pain. Underlying causes of delirium or pain should be addressed specifically when possible. Initiation of a crisis-intervention-oriented psychotherapeutic approach, mobilizing as much of the patient's support system as possible, is important. A close family member or friend should be involved in order to support the patient, provide information, and assist in treatment planning. Mobilizing consultative support for the treating clinician is also advisable. Psychiatric consultants, social work, and ethics committee involvement as necessary should be sought. Psychiatric hospitalization can sometimes be helpful but is usually not desirable in the terminally ill patient. Thus, the medical hospital or home is the setting in which management most often takes place. While it is appropriate to intervene when medical or psychiatric factors are clearly the driving force in a suicidal cancer patient, there are circumstances when usurping control from the patient and family with overly aggressive intervention may be less helpful. This is most evident in those with advanced illness in whom comfort and symptom control are adequate, competency is not an issue, and both patient and family are in agreement. The goal of intervention should not necessarily be to prevent all suicides at all costs, but rather to prevent suicide that is driven by desperation. Prolonged suffering due to poorly controlled symptoms leads to such desperation, and it is the consultant's role to provide effective management of such problems as an alternative to suicide in the cancer patient or AIDS patient with pain.

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