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Consideration of hastening death among hospice patients and their families
Vol. 27 No. 6 June 2004
Journal of Pain and Symptom Management
523
Original Article
Consideration of Hastening Death Among Hospice Patients and Their Families Elizabeth Mayfield Arnold, PhD, MSW, Katherine Abbott Artin, MSW, Judi Lund Person, MPH, and Devin L. Griffith, MSW Department of Psychiatry and Behavioral Medicine (E.M.A.), Wake Forest University School of Medicine, Winston-Salem, North Carolina; Hospice of Alamance-Caswell (K.A.A.), Burlington, North Carolina; The National Hospice and Palliative Care Organization (J.L.P.), Alexandria, Virginia; and Community Health Services (D.L.G.), Randolph Hospital, Asheboro, North Carolina, USA
Abstract The purpose of this study was to describe hospice social workers’ perceptions of cases where hospice patients or their family members expressed a desire to hasten the patient’s death. Surveys were mailed to hospice social workers (n ⫽ 212) in two Southeastern states. Response rate was 36%. Of the 73 respondents, 56.2% had a patient and 26.1% had a patient’s family member express a desire to hasten the patient’s death. Most patients had a cancer diagnosis (70.4%) and were predominantly male (66.6%), white (94.4%), and were married/had a partner (66.7%). Poor quality of life (28.3%) and concern for suffering (28.3%) were the most common reasons reported for the request to hasten death. These data suggest that the desire for hastened death is not uncommon among hospice patients. Social workers perceive these requests to be related primarily to unmet needs. J Pain Symptom Manage 2004;27:523–532. 쑖 2004 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Hospices, suicide, assisted suicide, hastening death, unmet needs, symptom management
Introduction Legal and ethical debates exist about the rights of persons at the end of life to hasten their death through active means, such as suicide and assisted suicide. In the past decade, researchers have begun to explore the issue of why an individual would make such a request.
Address reprint requests to: Elizabeth Mayfield Arnold, PhD, Department of Psychiatry and Behavioral Medicine, Wake Forest University School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1087, USA. Accepted for publication: October 23, 2003.
쑖 2004 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
It is commonly acknowledged that the desire to hasten death among persons with life-threatening illnesses is complex, and this issue is a source of contention among patients, health care professionals, legal scholars, and ethicists. Despite this recent focus on these cases, little is known about the incidence and circumstances surrounding the desire for hastening death among hospice patients. Only two known studies have examined this issue among hospice patients—one included data from only one hospice1 and the other2 examined cases from Oregon, where physician-assisted suicide (PAS) is legal. The lack of research on this topic may be in part due to the setting in which hospice 0885-3924/04/$–see front matter doi:10.1016/j.jpainsymman.2003.10.010
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services have traditionally taken place—in the patient’s home—and hence the lack of access to this population for research studies.
Hospice and Hastening Death The lack of research on hastening death among hospice patients may also be in part due to the perhaps erroneous assumption that hospice patients would not consider such an option. Assistance in dying appears to be against the hospice philosophy to which patients must subscribe when they enroll in hospice programs. In addition, the National Hospice and Palliative Care Association (NHPCO) clearly denounces its use in hospice care, as stated in the organization’s 1996 resolution rejecting assisted suicide. Yet, NHPCO acknowledges that the withholding or withdrawal of care in times of futility, as well as the secondary effects from symptom treatment that may hasten a death, are acceptable methods of practice.3 These fine distinctions present ethical dilemmas for hospice patients, caregivers, and health care providers in the face of hospice’s values on neither hastening nor postponing death. Although PAS and other forms of hastening death seem to be the antithesis of hospice care, it is unclear how hospice providers handle situations where patients or their family members express such a desire. Although public attitudes toward the acceptance of PAS have grown steadily over the past four decades,4 the public has generally viewed hospice care and PAS as polar opposites.5 Bartholome6 asserts that although supporters of PAS offer that it remains the only alternative to pain and suffering at the end of life, these supporters fail to recognize hospice care as an alternative or a resource that can confidently meet the needs of dying patients. Similarly, Byock5 states that hospice care seeks to alleviate pain and suffering, but hospice staff must be aware of unmet needs in order to provide effective intervention. Others have argued that “[r]equests for euthanasia or physician-assisted suicide should be viewed as a call for help; they are an indication that something is not going right.”7
Desire for Hastening Death at the End of Life Once thought to be an uncommon occurrence, the recent research suggests that the desire to hasten one’s death among persons at
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the end of life is not a rare event. Among hospice volunteers, Zehnder and Royse8 discovered that approximately 9% had a patient tell them that they were considering hastening their death, and 4% reported that a patient had asked him/her to provide assistance in doing so. In a study of patient encounters at one hospice, Daly and colleagues1 reported that in 19.2% of cases, the patient or family member made a comment about taking steps to precipitate the patient’s death. Additionally, hospice patients being cared for at home were three times more likely than those in a nursing home to discuss hastening death. In a study of 44 terminally ill patients, those who had depression (n ⫽ 11) were more likely to have considered suicide or report a desire for death.9 None of the patients without clinical depression had current or prior wishes for an early death related to their disease. Breitbart and colleagues10 found that 17% of terminally ill patients had a strong desire to hasten their death, which was loosely associated with depression, symptom severity, and hopelessness. In addition to depression, the existing research has documented a relationship between the desire to hasten death and a variety of other factors. Rosenfeld and colleagues4 found that the desire to hasten death was related to depression, as well as social support, cognitive dysfunction, and delirium. Concerns about dependency on others11,12 or fear of uncontrolled pain13 may also impact decision-making regarding hastening death. Among patients in Oregon who have used PAS to end their lives, the three most common end-of-life concerns reported were losing autonomy (85%), decreasing ability to participate in activities that make life enjoyable (77%), and losing control of bodily functions (63%).14 Oregon hospice nurses and social workers identified the desire to control the circumstances of one’s death as one of the most important reasons for requesting assistance with suicide for hospice patients in that state who received prescriptions for lethal medications.2
Social Workers and Intervention with Patients Considering Hastening Death Perhaps one of the most pressing questions that has yet to be answered is what is the most appropriate method of intervention when a patient or caregiver expresses a desire to hasten
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the patient’s death. Physicians are bound by the Hippocratic Oath to preserve life and the American Medical Association (AMA) has denounced assisted suicide as an appropriate method of intervention for terminally ill individuals.15 Nursing groups, such as the Oncology Nursing Society (ONS), have similarly made public statements against nurses participating in such situations but recommend that nurses discuss the request, attempt to address unmet needs, and not abandon the patient who makes such a request.16 For social workers who provide the majority of mental health interventions for persons at the end of life,17 the social work role in intervention with a patient who has requested a hastened death is perhaps less clear. Although state laws typically imply prohibitions on assisting in such situations, the National Association of Social Workers (NASW) (the largest social work membership organization in the United States) position statement on “Client Self-Determination in End-of-Life Decisions”18 allows for some professional discretion. The policy statement clearly states that “[i]t is inappropriate for social workers to deliver, supply, or personally participate in the commission of an act of assisted suicide when acting in their professional role.”18 The policy statement also recommends that “the social worker should explore and help ameliorate any factors such as pain, depression, need for medical treatment and so forth.”18 However, the policy allows for social workers to be present at an assisted suicide if it is legal to do so and it is done at the patient’s request. Furthermore, social workers’ perceptions on care at the end of life have not been included in most studies of hastening death. Thus, although no professions appear to sanction providing assistance in hastening death to patients and family members, it is unclear what the best practices are in these situations. Interventions that promote the immediate safety of the patient requesting a hastened death should be the first priority.19 However, it is unclear exactly what types of interventions are most effective with this population, which may be different from other non–terminally ill persons who are considering suicide. Furthermore, it is important to assess the nature of the request. Consequently, requests need to be understood in the context of the individual, the circumstances of his/her disease, and available psychosocial
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support.7 During the course of a patient’s medical treatment, emotional, psychological, and existential suffering may have been overlooked.7 Interventions with the patients must address any unmet medical, psychological, emotional, or social needs of the patient and his/her caregivers. Without such information, it is difficult to assess whether the request for hastening death is influenced by potentially treatable problems or concerns. In light of the dearth of literature on hospice patients and hastening death, the goal of this study was to describe hospice social worker’s experiences with patients who requested a desire to hasten their death, with an emphasis on the following: 1) the characteristics of the patients and the outcomes of the cases; 2) the presence of unmet needs in these cases; and 3) the goals developed, interventions used, and barriers to effective intervention identified in these cases. We focused specifically on social workers due to the lack of representation of social workers in other studies of hastening death and the important role that social workers play in addressing psychosocial issues in hospice settings. Additionally, this project was part of a social work–specific funded initiative in end-of-life care.
Methods Procedures This study employed a cross-sectional, selfadministered qualitative and quantitative survey design. The survey packet for this research was mailed to 212 social workers in two Southeastern states using a member mailing list provided by a regional hospice organization that serves both states. Eighty-nine percent of hospices in the two-state area are members of this organization. The survey packet included the following: a cover letter describing the purpose of the research, an informed consent form, the survey instrument, and two addressed, stamped envelopes (one to mail the survey and one to mail the informed consent form). Each survey instrument and informed consent form had matching unique identifiers, and both were mailed separately to the Principal Investigator (PI). This procedure ensured that if the survey instrument was lost in the mail, the identity of the subject could not be determined. Five weeks after
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the initial mailing, a follow-up letter was sent to those subjects who had not yet responded. Thirty-six percent of subjects (n ⫽ 73) returned a completed survey packet.
Questionnaire The PI on this project (EMA), in collaboration with two other professionals in end-of-life care (KAA and JLP), who were then both employed by the regional hospice association through which subjects were recruited, developed the survey instrument. The survey was based on the existing literature and the authors’ professional experience working in end-of-life care. After an initial draft was developed, the instrument was reviewed by over twenty experts in palliative care at a national end-of-life care meeting, and changes were made based on reviewer feedback. (Additional information about the survey items is available upon request.) In addition to demographic and background data about the subjects themselves and their employing hospices, subjects were asked to respond to questions about their experiences with hospice patients who considered hastening their death or situations where a patient’s family member wanted to hasten the patient’s death. In reporting these data, subjects were asked to report on their three most recent cases. (The survey also addressed issues related to subjects’ education and training in end-of-life care and their experiences with and perceptions of unmet needs among hospice patients in general, which are reported in a separate report.20)
Analysis Quantitative data were analyzed using standard descriptive statistical methods using SPSS version 10.0. To analyze qualitative data from open-ended survey questions, we developed a standardized, explicit coding system using content analysis. First, the two raters (graduate students employed on this project) examined the transcripts of open-ended questions to identify common and relevant themes in the responses. They then created mutually exclusive categories for each of the open-ended questions through an iterative process. The raters refined the thematic categories by coding the cases, discussing their disagreements and ambiguous cases, and revising the categories. They developed a detailed codebook with descrip-
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tors and examples that we used to reliably recognize occurrences of the themes mentioned above.21,22 The raters coded as many themes as necessary to capture the entire content of the survey responses, as many responses to individual questions included more than one theme. Next, the raters independently coded all responses. Inter-rater reliability was calculated using the kappa statistic.21 Responses were excluded from the analysis if they had frequencies of one. Kappa statistics were ⬎0.85 for the majority (77.6%) of the categories, and ⬎0.75 for the remainder, indicating moderate or better agreement among the raters coding the responses. Disagreements in coding were resolved by the discretion of a third rater (EMA). In these instances, the third rater coded the responses using the identified categories, and in all cases, the third rater’s coding matched one of the two other raters’ coding.
Results Subjects Subjects in this study were hospice social workers in two Southeastern states who were employed by member hospices of a regional hospice organization. They were primarily female (n ⫽ 66; 91.7%) and Caucasian (n ⫽ 67; 91.8%). The age range of subjects was as follows: 19.4% (n ⫽ 14) were under 30, 47.2% (n ⫽ 34) were between the ages of 31 and 45; 31.9% (n ⫽ 23) were between 46 and 60, and one subject (1.4%) was age 61 or older. Most subjects (n ⫽ 52; 71.2%) had a Masters degree in social work (MSW), about one-fourth had a Bachelors degree in social work (BSW) (n ⫽ 19; 26.0%), and one subject had a doctoral-level degree. Subjects reported a mean of 9.6 (SD ⫽ 7.6) years of paid social work experience, with a mean of 4.2 (SD ⫽ 3.7) years of hospice social work experience. A small number (n ⫽ 3; 4.1%) of the hospices served urban areas, but most served patients in rural areas (n ⫽ 29; 39.7%) or served patients in both urban and rural areas (n ⫽ 41; 56.2%). More than half (n ⫽ 43; 58.9%) provided services only to patients in their homes, whereas 41.1% (n ⫽ 30) of hospices also had inpatient facilities.
Hospice Policies on Hastening Death
By subject report, 67.1% of hospices (n ⫽ 49) had policies about how to handle situations
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when a patient is actively suicidal. Of the 29 subjects who provided information about their agencies’ policies, the most common components of the policies were to consult or notify the physician (n ⫽ 11; 37.9%); evaluate, assess, and/or monitor the patient (n ⫽ 10; 34.8%); and contact one’s supervisor or other team members (n ⫽ 10; 34.8%). A smaller percentage of hospices (37.1%; n ⫽ 26) had policies on how to handle situations where a patient’s family member expresses a desire to hasten a patient’s death. For the 12 policies described, the most common were informing the family of the hospice’s policy or philosophy on this issue (n ⫽ 5; 41.7%) or evaluating, assessing, and/or monitoring the situation (n ⫽ 3; 25%).
Prevalence of Requests The 73 subjects who returned the survey packet provided data on 54 hastening death cases. Over half (n ⫽ 41; 56.2%) of subjects who responded reported that they had experienced one or more cases during their hospice careers in which a patient expressed a desire to hasten his/her death based on the patient’s previously expressed wishes. Additionally, approximately one-fourth (n ⫽ 18; 24.7%) of subjects had received a request from a patient’s family member asking for assistance in hastening a patient’s death. Subjects reported that they had received an average of 2.9 patient requests (SD ⫽ 2.2) for assistance in hastening death during their careers, with an average of 1.0 (SD ⫽ 1.1) requests within the last year. They reported having received a family member request an average of 2.5 times (SD ⫽ 2.5) during their careers, and 0.8 times (SD ⫽ 0.9) within the last year. In addition, 11.0% (n ⫽ 8) of all subjects reported situations where a patient hastened his/her death without the subject’s prior knowledge of such intent. In six of these eight cases, the subject indicated that he/she believed that the patient’s family members were aware of the patient’s actions. In four of these eight cases, the subject reported that he/she believed that other members of the hospice team had prior knowledge of the patient or family member’s intent prior to the patient’s death.
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Table 1 Characteristics of Patients in Hastening Death Cases (n ⫽ 54) Patient Characteristics Sex Male Age, years 31–45 46–60 61–75 76 or older Race White African-American Education Less than high school/GED High school diploma/GED Some college College degree Graduate degree Marital status Married/had partner Widowed Divorced Single Religious preference Protestant None Catholic Other Jewish Primary diagnosis Cancer COPD ALS Unknown AIDS Neurological
n (%) 36 (66.7) 7 11 26 9
(13.2) (20.8) (49.1) (17.0)
51 (94.4) 3 (5.6) 5 22 9 11 5
(9.6) (42.3) (17.3) (21.2) (9.6)
36 10 5 3
(66.7) (18.5) (9.3) (5.6)
26 12 5 3 1
(55.3) (25.5) (10.6) (6.4) (2.1)
38 5 4 3 2 1
(70.4) (9.3) (7.4) (5.6) (3.7) (1.9)
In the majority of these cases (n ⫽ 45; 83.3%), the patient made the request to hasten death. Additionally, in most cases (n ⫽ 47; 87%), the patients had no known prior psychiatric history.
The Request for Hastening Death Table 2 provides additional information about the specifics of the request. Subjects most commonly were made aware of plans by the patient (n ⫽ 31; 57.4%) or the patient’s family member (n ⫽ 13; 24.1%). The nature of the patients’ requests for a hastened death varied and may not have been explicit. As noted in the table, almost one-third of patients (n ⫽ 17; 31.5%) reported a current desire for death, and a slightly smaller number (n ⫽ 14; 25.9%) described suicide plans for future possible use.
Description of Patients in Cases A description of the 54 patients in cases where the patient or family member considered hastening the patient’s death is provided in Table 1.
Subjects’ Perception of Cases In response to several open-ended survey questions, subjects described their perceptions
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Table 2 Specifics of Hastening Death Request (n ⫽ 54) Specifics of Case Basis of subject’s knowledge of desire to hasten death. Patient report to subject. Family member report to subject. Patient report to other hospice team member. Family member report to other hospice team member. Other. Specific request made.a Expressed suicidal ideation/desire to die. Described suicide plan for possible future use. Requested social worker assistance to hasten death. Indicated support for patient’s right to choose. Reported his/her desire to control situation. Reported his/her concern for suffering.
n (%)
31 (57.4) 13 (24.1) 6 (11.1) 2 (3.7) 2 (3.7) 17 (31.5) 14 (25.9) 9 (16.4) 7 (13.0) 7 (13.0) 6 (11.1)
a
Percentages do not add up to 100% as some subjects reported more than one answer.
regarding these cases, and these are described in Table 3. Subjects were asked about the reasons that they felt that the patient (or family member) wanted to hasten his/her death and their perceptions of unmet patient needs in these cases. As noted in the table, poor perceived quality of life was the most cited reason for hastening death and the second most common unmet need reported. In addition, subjects were also asked to describe their perception of what role unmet needs may have played in the patient or family considering hastening the patient’s death. Almost all subjects indicated that they felt that unmet needs “very much” (n ⫽ 37; 72.5%) or “somewhat” (n ⫽ 12; 23.5%) contributed to the desire to hasten death.
Interventions and Barriers The goals of the interventions provided in these 54 cases, as well as the types of interventions used and the barriers encountered are presented in Table 4. To address unmet needs and requests for hastening death, subjects used a variety of interventions targeted specifically at reducing suicidal ideation (n ⫽ 21; 38.9%) or improving the psychosocial functioning of the patient (n ⫽ 25; 46.3%). The most common interventions were counseling (n ⫽ 43; 58.9%) and suicide prevention (n ⫽ 31; 42.5%). More
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Table 3 Subjects’ Perceptions of Cases (n ⫽ 54) Subjects’ Perceptions Reason for consideration of hastening death. Described perceived poor quality of life. Reported his/her concern for suffering. Reported his/her desire to control situation or maintain independence. Reported physical pain and symptoms. Expressed emotional pain. Expressed a fear of being a burden on others. Expressed a fear of death. Expressed suicidal ideation/desire to die. Reported family issues. Unmet needs present Decreased ability to participate in activities that make life enjoyable. Poor perceived quality of life. Loss of autonomy. Depression. Fear of being a burden to others. Physical symptoms besides pain. Loss of control over bodily functions. Family stress or conflict. Fear of the future. Anxiety. Existential suffering. Poor social support or isolation. Anger. Inadequate caregiving. Financial difficulties. Uncontrolled pain.
n (%)a 15 (28.3) 15 (28.3) 13 (24.5) 10 (18.9) 10 (18.9) 7 (13.2) 3 (5.7) 3 (5.7) 2 (3.8) 38 (70.4) 34 31 31 30 26 25 21 19 17 16 14 13 13 13 12
(63.0) (57.4) (57.4) (55.6) (48.1) (46.3) (38.9) (35.2) (31.5) (29.6) (25.9) (24.1) (24.1) (24.1) (22.2)
a Percentages add up to more than 100% because most subjects reported more than one answer.
than half of the subjects (n ⫽ 28; 51.9%) perceived some barriers to effectively intervening with their patients and/or patients’ families, most commonly patient factors that were not medical in nature (n ⫽ 12; 22.2%), such as trust issues between the patient and hospice team or social isolation of the patient. In addition, most subjects reported that they involved others from the hospice team, specifically mentioning the team or staff in general (n ⫽ 22; 40.7%) or a specific staff member from the hospice (n ⫽ 14; 26.0%). Other resources used included non-hospice community resources (n ⫽ 12; 22.2%), the patient’s family (n ⫽ 10; 18.5%), other health care professionals that were not part of the hospice team (n ⫽ 9; 16.7%), and inpatient care (n ⫽ 3; 5.6%). A small number reported that they used hospice policies (n ⫽ 2; 3.7%) as a resource, and 22.2% (n ⫽ 12) reported that they used specific social work interventions (e.g., individual counseling, crisis intervention) as a resource.
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Table 4 Goals, Interventions, and Barriers in Hastening Death Cases (n ⫽ 54)a n (%) Goal of the intervention Improve psychosocial functioning Reduce suicidal ideation (specific) Ensure the safety of patient and family Manage pain and symptoms Increase social support system Protect the social worker’s liability Interventions used Counseling Suicide prevention Support Informing others Pain management/medication Education Open discussion Encouraging independence Mental health referral Social work activities Barriers to intervention Patient factors (non-medical) No barriers Lack of family or caregiver support Late referral or lack of a helping relationship Medical factors
25 21 8 7 3 1
(46.3) (38.9) (14.8) (13.0) (5.6) (1.9)
43 31 22 12 11 9 8 5 3 2
(58.9) (42.5) (30.1) (16.4) (15.1) (12.3) (10.1) (6.9) (4.1) (2.7)
12 10 9 6
(12.2) (18.5) (16.7) (11.1)
4 (7.4)
a
Percentages do not add up to 100% because some subjects reported more than one answer, and others who reported no answer were excluded from the analyses.
Patient Outcomes For each case reported, subjects were asked to provide information about the outcome of the case. In terms of the patient’s functioning, there was no improvement in medical (e.g., symptom control) or psychosocial (e.g., patient’s level of acceptance, social isolation) outcomes in the majority of cases (n ⫽ 38; 70.4%). In 22.2% (n ⫽ 12) of cases, improved psychosocial outcomes were reported, and in 9.3% (n ⫽ 5) of cases, improved medical outcomes were reported. Additionally, in most cases (n ⫽ 40; 74.1%), the patient or family member did not hasten the patient’s death. In 16.7% (n ⫽ 9) of cases it was unknown whether or not the patient’s death was hastened, and in 9.3% (n ⫽ 5) of cases the patient’s death was hastened.
Discussion This study provides information about the perceptions of hospice social workers regarding cases where a patient or family member of a patient reported that they were considering hastening the patient’s death. Few researchers have
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examined this issue among this population, and the issue of hastening death is an important one, given the emphasis in most hospices and the NHPCO policy against PAS. There are several important implications from our findings. First, consistent with the work of others,1 data obtained from subjects in this study indicate that consideration of hastening death among hospice patients does not appear to be a rare event, as most social workers had experienced one or more cases in the past year. In this study, we found that while discussions were primarily initiated by the patients themselves, family members also commonly initiated such discussions with hospice staff. Additionally, the patients in these cases appear to be similar to patients described in other research on hastening death among persons at the end of life. In a sample that included a large number of hospice patients, Back and colleagues11 also found that those who pursued PAS were primarily white, had cancer, and were married or living with a partner. Their sample included more female patients than were in our study. Others have failed to find differences in age, sex, and marital status between hospice patients who consider hastening death and those who do not.1 However, examination of national statistics and regional data from the area in which our data were collected provide further insight into how patients in these hastening death cases compare to hospice patients in general. In comparing our sample to national hospice data,23 hospice patients described in this study were more commonly male, white, and married. Similarly, as compared to findings from the twostate area where these data were collected,24,25 the patients in this study were more commonly white. In our study, almost all of the patients (n ⫽ 51; 94.4%) were white, as compared to 81.5% off all hospice patients in one state24 and 74.3% in the other.25 In addition, in these two states, lower rates of cancer diagnoses among hospice patients were reported than we found in the cases described by subjects in this study (56.0%26 and 54.5%25 as compared to 70.4% of our sample). Although 66.7% of patients described in our cases were male, only 46.1% of patients enrolled in hospice in this two-state area were male.24,25 One of the other noteworthy findings is that based on hospice social workers’ reports, these
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do not appear to be patients with a previous history of psychiatric problems, nor were mental health interventions from outside the hospice team typically employed. However, it is important to note that clinical social workers are utilized more often in hospice to evaluate patients considering hastening death than other mental health professionals from other disciplines,2 and the majority of mental health interventions at the end of life are provided by social workers.17 Thus, as our data in Table 4 suggest, social workers appear to be providing assessment and intervention in cases where consideration of death is an issue. Social workers can be of benefit to patients and families by assessing for psychosocial factors, such as depression, lack of social support, or financial stressors that may contribute to consideration of such an option. If such issues or problems are identified, social workers can provide supportive counseling, intervene with family members, and/or link patients and families or other needed health or community services. The perceived reasons for consideration of hastening death and the high incidence of observed unmet needs or problems among these patients is cause for concern and reflection. Quality-of-life issues and concern for suffering were the most commonly identified reasons identified by subjects as impacting consideration of hastening death. Similar to reports of patients in Oregon,2,14 subjects in this study perceived that the desire to control the situation or maintain independence was also present in these cases. Additionally, the most commonly identified unmet need in these cases, a decreased ability to participate in activities that make life enjoyable, was also documented by Wilson and colleagues27 as one of the factors that distinguished terminally ill patients with current interest in PAS from those with no interest or only future interest in PAS. In particular, it is worth noting that subjects in this study overwhelmingly perceived that unmet needs contributed to the consideration of hastening death. “While it is not always possible to avoid all factors that can interfere with a peaceful death, alleviating as many of the patient’s symptoms as possible is a primary goal of hospice care.”28 One must question why these needs are unmet and what impact, if any, would amelioration of these unmet needs have on the desire to hasten death. As noted by others,
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the expressed desire to die should lead to an exploration of the adequacy of care.29 Furthermore, among the terminally ill, untreated problems that may impact a desire to hasten death warrant aggressive treatment.4 In fact, others have questioned whether unrelieved suffering justifies hastening death and asserted that those in palliative care have a responsibility to make sure that assisted suicide is not a method of dealing with this issue.30 Perhaps the first, but potentially neglected, solution is for hospice professionals to initiate discussions with patients regarding consideration of hastening death to assess where patients stand on this issue. However, in many instances, health care providers, even those with years of experience, tend to feel uncomfortable discussing issues related to hastening death with patients, even though it is a necessary part of understanding the patient and can be therapeutic by allowing the patient to openly communicate about his/her thoughts and feelings.4 Back and colleagues11 examined qualities of clinician-patient interactions regarding assisted suicide and identified three qualities of interactions that were valued by patients and family members: openness to discussing PAS, clinical expertise in dealing with the dying process, and willingness of the clinician to maintain a relationship with the patient even when they disagreed about PAS. In fact, unwillingness to engage in such discussions can lead to a “don’t ask, don’t tell” policy, but discussion of PAS can be a starting point for discussions of death and what patients want their death to be like.11 Hospice professionals must anticipate that issues regarding hastening death will be raised by patients and family members and decide how they will respond.1 Despite the contributions of this study, several limitations must be noted. Given the challenges and ethical dilemmas associated with collecting data on this issue from hospice patients, we relied on provider reports. Others have also used this method of data collection and have noted that the benefit of this method is that patients can be included in the research who would otherwise have likely been unable to participate due to their physical condition.31 However, it is possible that the perceptions of the subjects in this study were inaccurate or their recollection of cases was hindered by the passage of time or other factors. Given the level of detail
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requested on cases, it is possible that some of the specific information provided on these cases is not as accurate as it would be in a prospective study. In addition, the results of this study may not be generalizable to other hospice patients, as our sample was from one geographic region that includes many rural and few urban areas. In summary, these data suggest that in cases where the hastening of the death of a hospice patient is being considered by the hospice patient or family member, the patients involved may differ from hospice patients in general. Further examination of demographic and other possible risk factors might allow for more effective methods of assessment and intervention to be developed. These findings also illuminate the fact that despite ongoing efforts to improve end-of-life care, many individuals in hospice still experience unmet needs that may play a role in consideration of hastening death. In the cases described in this study where hastening death was being considered as an option, social workers perceived that these patients were experiencing a wide range of unmet needs. Many of these needs, such as depression, physical symptoms, and anxiety, are potentially treatable problems. Byock32 asserts that hospice must acknowledge that unmet needs exist among hospice patients and examine the question of whether hospice practice is consistent with its theory, including honoring the stated intention to assist the patient until the end no matter what is required. However, a first step in addressing these needs is examining whether hospice staff have the time needed to assess patients given the problem of late referrals when patients are already near death. Furthermore, research is needed that examines forms of suffering besides physical pain so that once these issues are understood, interventions can be developed.30 We must seek to more effectively manage non-physical unmet needs, particularly psychosocial stressors and problems. For example, empirical studies that examine the efficacy of medication and psychotherapy for depressed persons at the end of life are needed.33 Without outcome data, it is difficult to assess which path to take in addressing the important issue of patients who die with potentially treatable unmet needs—some perhaps due to hastening death in the absence of appropriate or effective intervention.
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Acknowledgments This research was supported by a grant to Dr. Arnold from the Project on Death in America of the Open Society Institute.
References 1. Daly BJ, Hooks J, Youngner SJ, et al. Thoughts of hastening death among hospice patients. J Clin Eth 2000;11(1):56–64. 2. Ganzini L, Harvath TA, Jackson A, et al. Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. N Engl J Med 2002;347(8):582–588. 3. National Hospice and Palliative Care Organization. Statement of the National Hospice Organization Opposing the Legalization of Euthanasia and Assisted Suicide. Alexandria, VA: NHPCO, 1997. 4. Rosenfeld B, Krivo S, Breitbart W, et al. Suicide, assisted suicide, and euthanasia in the terminally ill. In: Chochinov HM, Breitbart W, eds. Handbook of psychiatry in palliative medicine. New York: Oxford University Press, 2000:51–62. 5. Byock IR. The hospice clinician’s response to euthanasia/physician assisted suicide. Hosp J 1994;9 (4):1–8. 6. Bartholome WG. Physician-assisted suicide, hospice, and rituals of withdrawal. J Law Med Ethics 1996;24:233–236. 7. McDonald MV, Passik SD, Coyle N. Addressing the needs of the patient who requests physician-assisted suicide or euthanasia. In: Chochinov HM, Breitbart W, eds. Handbook of psychiatry in palliative medicine. New York: Oxford University Press, 2000:349–356. 8. Zehnder PW, Royse D. Attitudes toward assisted suicide: a survey of hospice volunteers. Hosp J 1999; 14(2):49–63. 9. Brown JH, Henteleff P, Barakat S, et al. Is it normal for terminally ill patients to desire death? Am J Psychiatry 1986;143:208–211. 10. Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 2000;284 (22):2907–2911. 11. Back AL, Wallace JI, Starks HE, et al. Physicianassisted suicide and euthanasia in Washington State. Patient requests and physician responses. JAMA 2002;276(3):196–197. 12. Seale C, Addington-Hall J. Euthanasia: why people want to die earlier. Soc Sci Med 1994;39:647– 654. 13. Levin DN, Cleeland CS, Dar R. Public attitudes toward cancer pain. Cancer 1985;56:2337–2339.
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14. Office of Disease Prevention and Epidemiology. Fourth Annual Report on Oregon’s Death with Dignity Act. Portland, OR: Oregon Department of Human Services, 2002.
23. National Hospice and Palliative Care Organization. NHPCO facts and figures. Available at: http:// www.nhpco.org/public/articles/index.cfm?cat⫽67. Accessed October, 15, 2002.
15. American Medical Association. Policy E-2.211 Physician-assisted suicide. Available at: http://www. ama-assn.org/apps/pf_online/pf_online?f_n=browse &doc⫽policyfiles/CEJA/E-2.211.HTM. Accessed October 15, 2002.
24. The Carolinas Center for Hospice and End-ofLife Care. 2003 Annual data supplement to license application, 2003.
16. Oncology Nursing Society. The nurse’s responsibility to the patient requesting assisted suicide. Available at: http://www.ons.org/positions/assisted_ suicide.pdf. Accessed March 17, 2003. 17. Christ GH, Sormanti M. Advancing social work practice in end-of-life care. Soc Work Health Care 1999;30(2):81–99. 18. National Association of Social Workers. Client self-determination in end-of-life decisions. Social work speaks. National Association of Social Workers Policy Statements 2000-2003, 5th ed. Washington, DC: NASW Press, 2000:41–44. 19. Csikai EL. Euthanasia and assisted suicide: issues for social work practice. J Gerontol Soc Work 1999;31 (3/4):49–63. 20. Arnold EM, Artin KA, Griffith D, et al. Unmet needs at the end of life: perceptions of hospice social workers. In preparation. 21. Tulsky JA, Fischer GS, Rose MR, et al. Opening the black box: how do physicians communicate about advance directives? Ann Intern Med 1998;129:441– 449. 22. Corbin J, Strauss A. Basics of qualitative research: grounded theory, procedures, and techniques. Thousand Oaks, CA: Sage, 1990.
25. The Carolinas Center for Hospice and End-ofLife Care. Medicaid hospice client summary report, 2003. 26. The Carolinas Center for Hospice and End-ofLife Care, 2003. Hospice data supplement reporting form, 2003. 27. Wilson KG, Scott JF, Graham ID, et al. Attitudes of terminally ill patients toward euthanasia and physician-assisted suicide. Arch Intern Med 2000;160: 2454–2460. 28. Friedrich MJ. Experts describe optimal symptom management for hospice patients. JAMA 1999;282 (13):1213–1214. 29. Quill TE, Lee BC, Nunn S. Palliative treatments of last resort: choosing the least harmful alternative. Ann Intern Med 2000;132(6):488–493. 30. Williams JR. When suffering is unbearable: physicians, assisted suicide and euthanasia. J Palliat Care 1991;7(2):47–49. 31. Kutner JS, Kassner CT, Nowels DE. Symptom burden at the end of life: hospice providers’ perceptions. J Pain Symptom Manage 2001;21(6):473–480. 32. Byock IR. Final exit: a wake-up call to hospice. Hosp J 1992;7(4):51–66. 33. Ganzini L. Commentary: Assessment of clinical depression in patients who request physician-assisted death. J Pain Symptom Manage 2000;19(6):474–478.
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Original Article
Consideration of Hastening Death Among Hospice Patients and Their Families Elizabeth Mayfield Arnold, PhD, MSW, Katherine Abbott Artin, MSW, Judi Lund Person, MPH, and Devin L. Griffith, MSW Department of Psychiatry and Behavioral Medicine (E.M.A.), Wake Forest University School of Medicine, Winston-Salem, North Carolina; Hospice of Alamance-Caswell (K.A.A.), Burlington, North Carolina; The National Hospice and Palliative Care Organization (J.L.P.), Alexandria, Virginia; and Community Health Services (D.L.G.), Randolph Hospital, Asheboro, North Carolina, USA
Abstract The purpose of this study was to describe hospice social workers’ perceptions of cases where hospice patients or their family members expressed a desire to hasten the patient’s death. Surveys were mailed to hospice social workers (n ⫽ 212) in two Southeastern states. Response rate was 36%. Of the 73 respondents, 56.2% had a patient and 26.1% had a patient’s family member express a desire to hasten the patient’s death. Most patients had a cancer diagnosis (70.4%) and were predominantly male (66.6%), white (94.4%), and were married/had a partner (66.7%). Poor quality of life (28.3%) and concern for suffering (28.3%) were the most common reasons reported for the request to hasten death. These data suggest that the desire for hastened death is not uncommon among hospice patients. Social workers perceive these requests to be related primarily to unmet needs. J Pain Symptom Manage 2004;27:523–532. 쑖 2004 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Hospices, suicide, assisted suicide, hastening death, unmet needs, symptom management
Introduction Legal and ethical debates exist about the rights of persons at the end of life to hasten their death through active means, such as suicide and assisted suicide. In the past decade, researchers have begun to explore the issue of why an individual would make such a request.
Address reprint requests to: Elizabeth Mayfield Arnold, PhD, Department of Psychiatry and Behavioral Medicine, Wake Forest University School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1087, USA. Accepted for publication: October 23, 2003.
쑖 2004 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
It is commonly acknowledged that the desire to hasten death among persons with life-threatening illnesses is complex, and this issue is a source of contention among patients, health care professionals, legal scholars, and ethicists. Despite this recent focus on these cases, little is known about the incidence and circumstances surrounding the desire for hastening death among hospice patients. Only two known studies have examined this issue among hospice patients—one included data from only one hospice1 and the other2 examined cases from Oregon, where physician-assisted suicide (PAS) is legal. The lack of research on this topic may be in part due to the setting in which hospice 0885-3924/04/$–see front matter doi:10.1016/j.jpainsymman.2003.10.010
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services have traditionally taken place—in the patient’s home—and hence the lack of access to this population for research studies.
Hospice and Hastening Death The lack of research on hastening death among hospice patients may also be in part due to the perhaps erroneous assumption that hospice patients would not consider such an option. Assistance in dying appears to be against the hospice philosophy to which patients must subscribe when they enroll in hospice programs. In addition, the National Hospice and Palliative Care Association (NHPCO) clearly denounces its use in hospice care, as stated in the organization’s 1996 resolution rejecting assisted suicide. Yet, NHPCO acknowledges that the withholding or withdrawal of care in times of futility, as well as the secondary effects from symptom treatment that may hasten a death, are acceptable methods of practice.3 These fine distinctions present ethical dilemmas for hospice patients, caregivers, and health care providers in the face of hospice’s values on neither hastening nor postponing death. Although PAS and other forms of hastening death seem to be the antithesis of hospice care, it is unclear how hospice providers handle situations where patients or their family members express such a desire. Although public attitudes toward the acceptance of PAS have grown steadily over the past four decades,4 the public has generally viewed hospice care and PAS as polar opposites.5 Bartholome6 asserts that although supporters of PAS offer that it remains the only alternative to pain and suffering at the end of life, these supporters fail to recognize hospice care as an alternative or a resource that can confidently meet the needs of dying patients. Similarly, Byock5 states that hospice care seeks to alleviate pain and suffering, but hospice staff must be aware of unmet needs in order to provide effective intervention. Others have argued that “[r]equests for euthanasia or physician-assisted suicide should be viewed as a call for help; they are an indication that something is not going right.”7
Desire for Hastening Death at the End of Life Once thought to be an uncommon occurrence, the recent research suggests that the desire to hasten one’s death among persons at
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the end of life is not a rare event. Among hospice volunteers, Zehnder and Royse8 discovered that approximately 9% had a patient tell them that they were considering hastening their death, and 4% reported that a patient had asked him/her to provide assistance in doing so. In a study of patient encounters at one hospice, Daly and colleagues1 reported that in 19.2% of cases, the patient or family member made a comment about taking steps to precipitate the patient’s death. Additionally, hospice patients being cared for at home were three times more likely than those in a nursing home to discuss hastening death. In a study of 44 terminally ill patients, those who had depression (n ⫽ 11) were more likely to have considered suicide or report a desire for death.9 None of the patients without clinical depression had current or prior wishes for an early death related to their disease. Breitbart and colleagues10 found that 17% of terminally ill patients had a strong desire to hasten their death, which was loosely associated with depression, symptom severity, and hopelessness. In addition to depression, the existing research has documented a relationship between the desire to hasten death and a variety of other factors. Rosenfeld and colleagues4 found that the desire to hasten death was related to depression, as well as social support, cognitive dysfunction, and delirium. Concerns about dependency on others11,12 or fear of uncontrolled pain13 may also impact decision-making regarding hastening death. Among patients in Oregon who have used PAS to end their lives, the three most common end-of-life concerns reported were losing autonomy (85%), decreasing ability to participate in activities that make life enjoyable (77%), and losing control of bodily functions (63%).14 Oregon hospice nurses and social workers identified the desire to control the circumstances of one’s death as one of the most important reasons for requesting assistance with suicide for hospice patients in that state who received prescriptions for lethal medications.2
Social Workers and Intervention with Patients Considering Hastening Death Perhaps one of the most pressing questions that has yet to be answered is what is the most appropriate method of intervention when a patient or caregiver expresses a desire to hasten
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the patient’s death. Physicians are bound by the Hippocratic Oath to preserve life and the American Medical Association (AMA) has denounced assisted suicide as an appropriate method of intervention for terminally ill individuals.15 Nursing groups, such as the Oncology Nursing Society (ONS), have similarly made public statements against nurses participating in such situations but recommend that nurses discuss the request, attempt to address unmet needs, and not abandon the patient who makes such a request.16 For social workers who provide the majority of mental health interventions for persons at the end of life,17 the social work role in intervention with a patient who has requested a hastened death is perhaps less clear. Although state laws typically imply prohibitions on assisting in such situations, the National Association of Social Workers (NASW) (the largest social work membership organization in the United States) position statement on “Client Self-Determination in End-of-Life Decisions”18 allows for some professional discretion. The policy statement clearly states that “[i]t is inappropriate for social workers to deliver, supply, or personally participate in the commission of an act of assisted suicide when acting in their professional role.”18 The policy statement also recommends that “the social worker should explore and help ameliorate any factors such as pain, depression, need for medical treatment and so forth.”18 However, the policy allows for social workers to be present at an assisted suicide if it is legal to do so and it is done at the patient’s request. Furthermore, social workers’ perceptions on care at the end of life have not been included in most studies of hastening death. Thus, although no professions appear to sanction providing assistance in hastening death to patients and family members, it is unclear what the best practices are in these situations. Interventions that promote the immediate safety of the patient requesting a hastened death should be the first priority.19 However, it is unclear exactly what types of interventions are most effective with this population, which may be different from other non–terminally ill persons who are considering suicide. Furthermore, it is important to assess the nature of the request. Consequently, requests need to be understood in the context of the individual, the circumstances of his/her disease, and available psychosocial
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support.7 During the course of a patient’s medical treatment, emotional, psychological, and existential suffering may have been overlooked.7 Interventions with the patients must address any unmet medical, psychological, emotional, or social needs of the patient and his/her caregivers. Without such information, it is difficult to assess whether the request for hastening death is influenced by potentially treatable problems or concerns. In light of the dearth of literature on hospice patients and hastening death, the goal of this study was to describe hospice social worker’s experiences with patients who requested a desire to hasten their death, with an emphasis on the following: 1) the characteristics of the patients and the outcomes of the cases; 2) the presence of unmet needs in these cases; and 3) the goals developed, interventions used, and barriers to effective intervention identified in these cases. We focused specifically on social workers due to the lack of representation of social workers in other studies of hastening death and the important role that social workers play in addressing psychosocial issues in hospice settings. Additionally, this project was part of a social work–specific funded initiative in end-of-life care.
Methods Procedures This study employed a cross-sectional, selfadministered qualitative and quantitative survey design. The survey packet for this research was mailed to 212 social workers in two Southeastern states using a member mailing list provided by a regional hospice organization that serves both states. Eighty-nine percent of hospices in the two-state area are members of this organization. The survey packet included the following: a cover letter describing the purpose of the research, an informed consent form, the survey instrument, and two addressed, stamped envelopes (one to mail the survey and one to mail the informed consent form). Each survey instrument and informed consent form had matching unique identifiers, and both were mailed separately to the Principal Investigator (PI). This procedure ensured that if the survey instrument was lost in the mail, the identity of the subject could not be determined. Five weeks after
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the initial mailing, a follow-up letter was sent to those subjects who had not yet responded. Thirty-six percent of subjects (n ⫽ 73) returned a completed survey packet.
Questionnaire The PI on this project (EMA), in collaboration with two other professionals in end-of-life care (KAA and JLP), who were then both employed by the regional hospice association through which subjects were recruited, developed the survey instrument. The survey was based on the existing literature and the authors’ professional experience working in end-of-life care. After an initial draft was developed, the instrument was reviewed by over twenty experts in palliative care at a national end-of-life care meeting, and changes were made based on reviewer feedback. (Additional information about the survey items is available upon request.) In addition to demographic and background data about the subjects themselves and their employing hospices, subjects were asked to respond to questions about their experiences with hospice patients who considered hastening their death or situations where a patient’s family member wanted to hasten the patient’s death. In reporting these data, subjects were asked to report on their three most recent cases. (The survey also addressed issues related to subjects’ education and training in end-of-life care and their experiences with and perceptions of unmet needs among hospice patients in general, which are reported in a separate report.20)
Analysis Quantitative data were analyzed using standard descriptive statistical methods using SPSS version 10.0. To analyze qualitative data from open-ended survey questions, we developed a standardized, explicit coding system using content analysis. First, the two raters (graduate students employed on this project) examined the transcripts of open-ended questions to identify common and relevant themes in the responses. They then created mutually exclusive categories for each of the open-ended questions through an iterative process. The raters refined the thematic categories by coding the cases, discussing their disagreements and ambiguous cases, and revising the categories. They developed a detailed codebook with descrip-
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tors and examples that we used to reliably recognize occurrences of the themes mentioned above.21,22 The raters coded as many themes as necessary to capture the entire content of the survey responses, as many responses to individual questions included more than one theme. Next, the raters independently coded all responses. Inter-rater reliability was calculated using the kappa statistic.21 Responses were excluded from the analysis if they had frequencies of one. Kappa statistics were ⬎0.85 for the majority (77.6%) of the categories, and ⬎0.75 for the remainder, indicating moderate or better agreement among the raters coding the responses. Disagreements in coding were resolved by the discretion of a third rater (EMA). In these instances, the third rater coded the responses using the identified categories, and in all cases, the third rater’s coding matched one of the two other raters’ coding.
Results Subjects Subjects in this study were hospice social workers in two Southeastern states who were employed by member hospices of a regional hospice organization. They were primarily female (n ⫽ 66; 91.7%) and Caucasian (n ⫽ 67; 91.8%). The age range of subjects was as follows: 19.4% (n ⫽ 14) were under 30, 47.2% (n ⫽ 34) were between the ages of 31 and 45; 31.9% (n ⫽ 23) were between 46 and 60, and one subject (1.4%) was age 61 or older. Most subjects (n ⫽ 52; 71.2%) had a Masters degree in social work (MSW), about one-fourth had a Bachelors degree in social work (BSW) (n ⫽ 19; 26.0%), and one subject had a doctoral-level degree. Subjects reported a mean of 9.6 (SD ⫽ 7.6) years of paid social work experience, with a mean of 4.2 (SD ⫽ 3.7) years of hospice social work experience. A small number (n ⫽ 3; 4.1%) of the hospices served urban areas, but most served patients in rural areas (n ⫽ 29; 39.7%) or served patients in both urban and rural areas (n ⫽ 41; 56.2%). More than half (n ⫽ 43; 58.9%) provided services only to patients in their homes, whereas 41.1% (n ⫽ 30) of hospices also had inpatient facilities.
Hospice Policies on Hastening Death
By subject report, 67.1% of hospices (n ⫽ 49) had policies about how to handle situations
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when a patient is actively suicidal. Of the 29 subjects who provided information about their agencies’ policies, the most common components of the policies were to consult or notify the physician (n ⫽ 11; 37.9%); evaluate, assess, and/or monitor the patient (n ⫽ 10; 34.8%); and contact one’s supervisor or other team members (n ⫽ 10; 34.8%). A smaller percentage of hospices (37.1%; n ⫽ 26) had policies on how to handle situations where a patient’s family member expresses a desire to hasten a patient’s death. For the 12 policies described, the most common were informing the family of the hospice’s policy or philosophy on this issue (n ⫽ 5; 41.7%) or evaluating, assessing, and/or monitoring the situation (n ⫽ 3; 25%).
Prevalence of Requests The 73 subjects who returned the survey packet provided data on 54 hastening death cases. Over half (n ⫽ 41; 56.2%) of subjects who responded reported that they had experienced one or more cases during their hospice careers in which a patient expressed a desire to hasten his/her death based on the patient’s previously expressed wishes. Additionally, approximately one-fourth (n ⫽ 18; 24.7%) of subjects had received a request from a patient’s family member asking for assistance in hastening a patient’s death. Subjects reported that they had received an average of 2.9 patient requests (SD ⫽ 2.2) for assistance in hastening death during their careers, with an average of 1.0 (SD ⫽ 1.1) requests within the last year. They reported having received a family member request an average of 2.5 times (SD ⫽ 2.5) during their careers, and 0.8 times (SD ⫽ 0.9) within the last year. In addition, 11.0% (n ⫽ 8) of all subjects reported situations where a patient hastened his/her death without the subject’s prior knowledge of such intent. In six of these eight cases, the subject indicated that he/she believed that the patient’s family members were aware of the patient’s actions. In four of these eight cases, the subject reported that he/she believed that other members of the hospice team had prior knowledge of the patient or family member’s intent prior to the patient’s death.
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Table 1 Characteristics of Patients in Hastening Death Cases (n ⫽ 54) Patient Characteristics Sex Male Age, years 31–45 46–60 61–75 76 or older Race White African-American Education Less than high school/GED High school diploma/GED Some college College degree Graduate degree Marital status Married/had partner Widowed Divorced Single Religious preference Protestant None Catholic Other Jewish Primary diagnosis Cancer COPD ALS Unknown AIDS Neurological
n (%) 36 (66.7) 7 11 26 9
(13.2) (20.8) (49.1) (17.0)
51 (94.4) 3 (5.6) 5 22 9 11 5
(9.6) (42.3) (17.3) (21.2) (9.6)
36 10 5 3
(66.7) (18.5) (9.3) (5.6)
26 12 5 3 1
(55.3) (25.5) (10.6) (6.4) (2.1)
38 5 4 3 2 1
(70.4) (9.3) (7.4) (5.6) (3.7) (1.9)
In the majority of these cases (n ⫽ 45; 83.3%), the patient made the request to hasten death. Additionally, in most cases (n ⫽ 47; 87%), the patients had no known prior psychiatric history.
The Request for Hastening Death Table 2 provides additional information about the specifics of the request. Subjects most commonly were made aware of plans by the patient (n ⫽ 31; 57.4%) or the patient’s family member (n ⫽ 13; 24.1%). The nature of the patients’ requests for a hastened death varied and may not have been explicit. As noted in the table, almost one-third of patients (n ⫽ 17; 31.5%) reported a current desire for death, and a slightly smaller number (n ⫽ 14; 25.9%) described suicide plans for future possible use.
Description of Patients in Cases A description of the 54 patients in cases where the patient or family member considered hastening the patient’s death is provided in Table 1.
Subjects’ Perception of Cases In response to several open-ended survey questions, subjects described their perceptions
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Table 2 Specifics of Hastening Death Request (n ⫽ 54) Specifics of Case Basis of subject’s knowledge of desire to hasten death. Patient report to subject. Family member report to subject. Patient report to other hospice team member. Family member report to other hospice team member. Other. Specific request made.a Expressed suicidal ideation/desire to die. Described suicide plan for possible future use. Requested social worker assistance to hasten death. Indicated support for patient’s right to choose. Reported his/her desire to control situation. Reported his/her concern for suffering.
n (%)
31 (57.4) 13 (24.1) 6 (11.1) 2 (3.7) 2 (3.7) 17 (31.5) 14 (25.9) 9 (16.4) 7 (13.0) 7 (13.0) 6 (11.1)
a
Percentages do not add up to 100% as some subjects reported more than one answer.
regarding these cases, and these are described in Table 3. Subjects were asked about the reasons that they felt that the patient (or family member) wanted to hasten his/her death and their perceptions of unmet patient needs in these cases. As noted in the table, poor perceived quality of life was the most cited reason for hastening death and the second most common unmet need reported. In addition, subjects were also asked to describe their perception of what role unmet needs may have played in the patient or family considering hastening the patient’s death. Almost all subjects indicated that they felt that unmet needs “very much” (n ⫽ 37; 72.5%) or “somewhat” (n ⫽ 12; 23.5%) contributed to the desire to hasten death.
Interventions and Barriers The goals of the interventions provided in these 54 cases, as well as the types of interventions used and the barriers encountered are presented in Table 4. To address unmet needs and requests for hastening death, subjects used a variety of interventions targeted specifically at reducing suicidal ideation (n ⫽ 21; 38.9%) or improving the psychosocial functioning of the patient (n ⫽ 25; 46.3%). The most common interventions were counseling (n ⫽ 43; 58.9%) and suicide prevention (n ⫽ 31; 42.5%). More
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Table 3 Subjects’ Perceptions of Cases (n ⫽ 54) Subjects’ Perceptions Reason for consideration of hastening death. Described perceived poor quality of life. Reported his/her concern for suffering. Reported his/her desire to control situation or maintain independence. Reported physical pain and symptoms. Expressed emotional pain. Expressed a fear of being a burden on others. Expressed a fear of death. Expressed suicidal ideation/desire to die. Reported family issues. Unmet needs present Decreased ability to participate in activities that make life enjoyable. Poor perceived quality of life. Loss of autonomy. Depression. Fear of being a burden to others. Physical symptoms besides pain. Loss of control over bodily functions. Family stress or conflict. Fear of the future. Anxiety. Existential suffering. Poor social support or isolation. Anger. Inadequate caregiving. Financial difficulties. Uncontrolled pain.
n (%)a 15 (28.3) 15 (28.3) 13 (24.5) 10 (18.9) 10 (18.9) 7 (13.2) 3 (5.7) 3 (5.7) 2 (3.8) 38 (70.4) 34 31 31 30 26 25 21 19 17 16 14 13 13 13 12
(63.0) (57.4) (57.4) (55.6) (48.1) (46.3) (38.9) (35.2) (31.5) (29.6) (25.9) (24.1) (24.1) (24.1) (22.2)
a Percentages add up to more than 100% because most subjects reported more than one answer.
than half of the subjects (n ⫽ 28; 51.9%) perceived some barriers to effectively intervening with their patients and/or patients’ families, most commonly patient factors that were not medical in nature (n ⫽ 12; 22.2%), such as trust issues between the patient and hospice team or social isolation of the patient. In addition, most subjects reported that they involved others from the hospice team, specifically mentioning the team or staff in general (n ⫽ 22; 40.7%) or a specific staff member from the hospice (n ⫽ 14; 26.0%). Other resources used included non-hospice community resources (n ⫽ 12; 22.2%), the patient’s family (n ⫽ 10; 18.5%), other health care professionals that were not part of the hospice team (n ⫽ 9; 16.7%), and inpatient care (n ⫽ 3; 5.6%). A small number reported that they used hospice policies (n ⫽ 2; 3.7%) as a resource, and 22.2% (n ⫽ 12) reported that they used specific social work interventions (e.g., individual counseling, crisis intervention) as a resource.
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Table 4 Goals, Interventions, and Barriers in Hastening Death Cases (n ⫽ 54)a n (%) Goal of the intervention Improve psychosocial functioning Reduce suicidal ideation (specific) Ensure the safety of patient and family Manage pain and symptoms Increase social support system Protect the social worker’s liability Interventions used Counseling Suicide prevention Support Informing others Pain management/medication Education Open discussion Encouraging independence Mental health referral Social work activities Barriers to intervention Patient factors (non-medical) No barriers Lack of family or caregiver support Late referral or lack of a helping relationship Medical factors
25 21 8 7 3 1
(46.3) (38.9) (14.8) (13.0) (5.6) (1.9)
43 31 22 12 11 9 8 5 3 2
(58.9) (42.5) (30.1) (16.4) (15.1) (12.3) (10.1) (6.9) (4.1) (2.7)
12 10 9 6
(12.2) (18.5) (16.7) (11.1)
4 (7.4)
a
Percentages do not add up to 100% because some subjects reported more than one answer, and others who reported no answer were excluded from the analyses.
Patient Outcomes For each case reported, subjects were asked to provide information about the outcome of the case. In terms of the patient’s functioning, there was no improvement in medical (e.g., symptom control) or psychosocial (e.g., patient’s level of acceptance, social isolation) outcomes in the majority of cases (n ⫽ 38; 70.4%). In 22.2% (n ⫽ 12) of cases, improved psychosocial outcomes were reported, and in 9.3% (n ⫽ 5) of cases, improved medical outcomes were reported. Additionally, in most cases (n ⫽ 40; 74.1%), the patient or family member did not hasten the patient’s death. In 16.7% (n ⫽ 9) of cases it was unknown whether or not the patient’s death was hastened, and in 9.3% (n ⫽ 5) of cases the patient’s death was hastened.
Discussion This study provides information about the perceptions of hospice social workers regarding cases where a patient or family member of a patient reported that they were considering hastening the patient’s death. Few researchers have
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examined this issue among this population, and the issue of hastening death is an important one, given the emphasis in most hospices and the NHPCO policy against PAS. There are several important implications from our findings. First, consistent with the work of others,1 data obtained from subjects in this study indicate that consideration of hastening death among hospice patients does not appear to be a rare event, as most social workers had experienced one or more cases in the past year. In this study, we found that while discussions were primarily initiated by the patients themselves, family members also commonly initiated such discussions with hospice staff. Additionally, the patients in these cases appear to be similar to patients described in other research on hastening death among persons at the end of life. In a sample that included a large number of hospice patients, Back and colleagues11 also found that those who pursued PAS were primarily white, had cancer, and were married or living with a partner. Their sample included more female patients than were in our study. Others have failed to find differences in age, sex, and marital status between hospice patients who consider hastening death and those who do not.1 However, examination of national statistics and regional data from the area in which our data were collected provide further insight into how patients in these hastening death cases compare to hospice patients in general. In comparing our sample to national hospice data,23 hospice patients described in this study were more commonly male, white, and married. Similarly, as compared to findings from the twostate area where these data were collected,24,25 the patients in this study were more commonly white. In our study, almost all of the patients (n ⫽ 51; 94.4%) were white, as compared to 81.5% off all hospice patients in one state24 and 74.3% in the other.25 In addition, in these two states, lower rates of cancer diagnoses among hospice patients were reported than we found in the cases described by subjects in this study (56.0%26 and 54.5%25 as compared to 70.4% of our sample). Although 66.7% of patients described in our cases were male, only 46.1% of patients enrolled in hospice in this two-state area were male.24,25 One of the other noteworthy findings is that based on hospice social workers’ reports, these
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do not appear to be patients with a previous history of psychiatric problems, nor were mental health interventions from outside the hospice team typically employed. However, it is important to note that clinical social workers are utilized more often in hospice to evaluate patients considering hastening death than other mental health professionals from other disciplines,2 and the majority of mental health interventions at the end of life are provided by social workers.17 Thus, as our data in Table 4 suggest, social workers appear to be providing assessment and intervention in cases where consideration of death is an issue. Social workers can be of benefit to patients and families by assessing for psychosocial factors, such as depression, lack of social support, or financial stressors that may contribute to consideration of such an option. If such issues or problems are identified, social workers can provide supportive counseling, intervene with family members, and/or link patients and families or other needed health or community services. The perceived reasons for consideration of hastening death and the high incidence of observed unmet needs or problems among these patients is cause for concern and reflection. Quality-of-life issues and concern for suffering were the most commonly identified reasons identified by subjects as impacting consideration of hastening death. Similar to reports of patients in Oregon,2,14 subjects in this study perceived that the desire to control the situation or maintain independence was also present in these cases. Additionally, the most commonly identified unmet need in these cases, a decreased ability to participate in activities that make life enjoyable, was also documented by Wilson and colleagues27 as one of the factors that distinguished terminally ill patients with current interest in PAS from those with no interest or only future interest in PAS. In particular, it is worth noting that subjects in this study overwhelmingly perceived that unmet needs contributed to the consideration of hastening death. “While it is not always possible to avoid all factors that can interfere with a peaceful death, alleviating as many of the patient’s symptoms as possible is a primary goal of hospice care.”28 One must question why these needs are unmet and what impact, if any, would amelioration of these unmet needs have on the desire to hasten death. As noted by others,
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the expressed desire to die should lead to an exploration of the adequacy of care.29 Furthermore, among the terminally ill, untreated problems that may impact a desire to hasten death warrant aggressive treatment.4 In fact, others have questioned whether unrelieved suffering justifies hastening death and asserted that those in palliative care have a responsibility to make sure that assisted suicide is not a method of dealing with this issue.30 Perhaps the first, but potentially neglected, solution is for hospice professionals to initiate discussions with patients regarding consideration of hastening death to assess where patients stand on this issue. However, in many instances, health care providers, even those with years of experience, tend to feel uncomfortable discussing issues related to hastening death with patients, even though it is a necessary part of understanding the patient and can be therapeutic by allowing the patient to openly communicate about his/her thoughts and feelings.4 Back and colleagues11 examined qualities of clinician-patient interactions regarding assisted suicide and identified three qualities of interactions that were valued by patients and family members: openness to discussing PAS, clinical expertise in dealing with the dying process, and willingness of the clinician to maintain a relationship with the patient even when they disagreed about PAS. In fact, unwillingness to engage in such discussions can lead to a “don’t ask, don’t tell” policy, but discussion of PAS can be a starting point for discussions of death and what patients want their death to be like.11 Hospice professionals must anticipate that issues regarding hastening death will be raised by patients and family members and decide how they will respond.1 Despite the contributions of this study, several limitations must be noted. Given the challenges and ethical dilemmas associated with collecting data on this issue from hospice patients, we relied on provider reports. Others have also used this method of data collection and have noted that the benefit of this method is that patients can be included in the research who would otherwise have likely been unable to participate due to their physical condition.31 However, it is possible that the perceptions of the subjects in this study were inaccurate or their recollection of cases was hindered by the passage of time or other factors. Given the level of detail
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requested on cases, it is possible that some of the specific information provided on these cases is not as accurate as it would be in a prospective study. In addition, the results of this study may not be generalizable to other hospice patients, as our sample was from one geographic region that includes many rural and few urban areas. In summary, these data suggest that in cases where the hastening of the death of a hospice patient is being considered by the hospice patient or family member, the patients involved may differ from hospice patients in general. Further examination of demographic and other possible risk factors might allow for more effective methods of assessment and intervention to be developed. These findings also illuminate the fact that despite ongoing efforts to improve end-of-life care, many individuals in hospice still experience unmet needs that may play a role in consideration of hastening death. In the cases described in this study where hastening death was being considered as an option, social workers perceived that these patients were experiencing a wide range of unmet needs. Many of these needs, such as depression, physical symptoms, and anxiety, are potentially treatable problems. Byock32 asserts that hospice must acknowledge that unmet needs exist among hospice patients and examine the question of whether hospice practice is consistent with its theory, including honoring the stated intention to assist the patient until the end no matter what is required. However, a first step in addressing these needs is examining whether hospice staff have the time needed to assess patients given the problem of late referrals when patients are already near death. Furthermore, research is needed that examines forms of suffering besides physical pain so that once these issues are understood, interventions can be developed.30 We must seek to more effectively manage non-physical unmet needs, particularly psychosocial stressors and problems. For example, empirical studies that examine the efficacy of medication and psychotherapy for depressed persons at the end of life are needed.33 Without outcome data, it is difficult to assess which path to take in addressing the important issue of patients who die with potentially treatable unmet needs—some perhaps due to hastening death in the absence of appropriate or effective intervention.
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Acknowledgments This research was supported by a grant to Dr. Arnold from the Project on Death in America of the Open Society Institute.
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