Psychosomatics 45:311-318, August 2004
© 2004 The Academy of Psychosomatic Medicine
Association Between Clinician Factors and a Patient's Wish to Hasten Death: Terminally Ill Cancer Patients and Their Doctors
Brian J. Kelly, F.R.A.N.Z.C.P., Ph.D.,
Paul C. Burnett, Ph.D.,
Dan Pelusi, M.Clin.Psych.,
Shirlene J. Badger, B.A.,
Francis T. Varghese, F.R.A.N.Z.C.P., and
Marguerite M. Robertson, F.A.Ch.P.M.
Received April 30, 2003; revision received Oct. 21, 2003; accepted Nov. 24, 2003. From the Centre for Rural and Remote Mental Health, University of Newcastle; the Centre for Research and Graduate Training, Charles Sturt University, Wagga Wagga, N.S.W., Australia; the Department of Psychiatry, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia; and the Office of Public Policy and Ethics, Institute for Molecular Bioscience, University of Queensland, St. Lucia, Queensland, Australia. Address reprint requests to Dr. Kelly, Centre for Rural and Remote Mental Health, University of Newcastle, Orange, 2800, N.S.W., Australia; brian.kelly{at}mwahs.nsw.gov.au (e-mail).
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ABSTRACT
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This study investigated the clinical factors associated with a wish to hasten death among patients with advanced cancer receiving palliative care, with a focus on the role of clinician-related factors. Patients were grouped into high- and low-scoring groups on the basis of their wish to hasten death; doctor-patient pairs were formed. Questionnaire data collected from patients and their treating doctors were subjected to multivariate analysis. Significant predictors of a high wish to hasten death in terminally ill patients from among treating clinicians included the clinician's perception of the patient's lower optimism and greater emotional suffering, the patient indicating a wish to hasten death, the doctor willing to assist the patient in hastening death (if requested and legal), and the doctor reporting less training in psychotherapy. When these variables were combined with patient factors identified in a previous study, the model significantly predicted a wish to hasten death with the following variables—patient factors: a higher perceived burden on others, higher depressive symptom scores, and lower family cohesion; physician factors: the doctor willing to assist the patient in hastening death (if requested and legal), the doctor's perception of lower levels of optimism and greater emotional distress in the patient, and the doctor having less training in psychotherapy; and the setting of care: recent admission to a hospice. The findings support the multifactorial influences on the wish to hasten death and suggest that the role of the clinician is a vital context within which the wish to hasten death should be considered.
Key Words: suicide • interviews • depression • other ethics issues
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INTRODUCTION
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Recent research has attempted to examine the clinical underpinnings of the request for assisted suicide, euthanasia, and the wish for hastened death. Such research has demonstrated the significant relationship between key psychological and social variables, such as depression, and the wish for hastened death and interest in assisted suicide in a range of clinical groups, including the terminally ill.1–5
Concurrently, a separate body of literature has demonstrated an increasing recognition of the complex demands faced by doctors and other health professionals in caring for a dying patient.6,7 The doctor must maintain ethical practice amid the substantial emotional impact of advancing disease, manage the complex clinical problems and medical treatment options that can be encountered, and deal with the impact of impending death for patient and doctor. These factors may have a critical influence on the patient's response to the illness and be among the important clinical factors associated with the development of the wish to hasten one's death or request for assisted suicide when facing terminal illness.
The relationship with the health care team is an important factor shaping the experience and adaptation of the dying patient and his or her family.6 The relationship with the treating doctor has particular significance.8 The importance of the quality of communication about diagnosis, prognosis, and treatment options has received increasing recognition and has become an important focus in the training of medical practitioners, particularly oncologists.9,10
The emotional demands experienced by doctors in caring for a seriously ill or dying patient may adversely affect the quality of the doctor-patient interaction.7 Important tasks for doctors in the care of a dying patient include the exploration of the patient's suffering, the task of undertaking and/or identifying the role for psychological interventions, providing continuity in the relationship with the patient, assisting the patient in adapting to the impact of physical illness, and identifying and appropriately responding to the psychological and social needs of the patient's family and others.11 The doctor also faces a set of complex emotional demands in responding to the request for assisted suicide when it arises.12–16 The doctor-patient interaction has additional significance where legislation permits assisted suicide, as specific roles are set for the doctor in assessing and responding to such a request.11,17,18
In a previous report,19 we investigated and described a set of patient factors associated with the wish to hasten death among 256 terminally ill patients. A discriminant function analysis revealed that the following eight variables measured among the patients predicted a high wish to hasten death (p<0.001): higher levels of depressive symptoms, admission to an inpatient hospice setting, a greater perception of being a burden on others, lower family cohesion, lower levels of social support (number of supports and satisfaction with them), higher levels of anxiety, and patient reports of a greater impact of physical symptoms.
The current study investigated whether variables identified from doctors participating in the care of a dying patient predicted the patients' wish to hasten death. This study also aimed at identifying the relative contribution of clinical factors, including both patient- and doctor-related variables, to the patient's wish to hasten death, with the hypothesis that factors within the doctor-patient interaction and doctor-patient relationship would be significant predictors of the wish to hasten death.
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METHOD
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Doctors were recruited to the study through the following process. Each participating patient provided the name of the doctor who referred him or her to the palliative care setting and/or a doctor the patient nominated as having known him or her well or who was involved in the person's treatment and care. An interviewer, blind to patient data, contacted the doctor of each of the consenting patients and requested their participation in the study. In cases in which the patient identified two doctors, each doctor-patient pair was treated as a separate unit for analysis. The institutional ethics committees from the University of Queensland, Princess Alexandra Hospital, and Mt. Olivet Hospital approved the study.
Each doctor completed a self-report questionnaire encompassing six domains on the basis of information derived from the literature and from clinical experience of the research team as being key areas for investigating the role of doctor factors in a patient's wish to hasten death. The questionnaire items were developed, piloted, and refined by the research team. The six domains are described as follows:
- Perception of the patient's social background and support (eight variables). This was assessed by asking each doctor to rate his or her perception of the patient's family and social network, the level of family distress and ability of the family to cope with stress, the level of emotional support being provided to the patient and the patient's family, and the significance of spirituality to the patient and his or her family.
- Goals of current treatment (nine variables). This was assessed by asking each doctor to select from a list of treatment goals (management of pain and other physical symptoms, management of psychiatric symptoms, psychological support, family support, respite care, further investigation, withdrawal or cessation of treatment, and other) and to rate the importance of these goals in relation to the patient.
- Perception of factors contributing to the patient's suffering (nine variables). This was assessed by asking the doctor to rate the level of the patient's physical and emotional suffering and to select the main sources of the patient's distress from a list of factors (physical, psychiatric, spiritual, family, grief, psychological, and other).
- Attitudes toward assisted suicide and euthanasia (five variables). Each doctor was asked to rate his or her patient's perceived attitude toward the illness (optimistic to pessimistic), whether the patient and the patient's family had discussed a wish to hasten death with the doctor, whether the doctor felt that the patient would be better off dying sooner in order to be spared suffering, whether—if legal and requested by the patient—the doctor would consider assisting the patient in hastening his or her death, and whether—if legal—the doctor was prepared to assist the patient in hastening his or her death upon the patient's request through some active intervention.
- Training and experience (five variables). This was assessed by asking doctors to report the average number of patients treated who had advanced malignancy or other end-stage disease, whether the doctor had any specific training in palliative medicine, whether the doctor had specific training in counseling or psychological therapies, and whether the doctor had a need for further education in palliative care.
- Emotional impact experienced in the management of this patient's illness (seven variables). The doctor rated his or her level of confidence in addressing the goals of treatment and the causes of the patient's suffering, the degree of difficulty experienced in caring for the patient, whether the doctor saw himself or herself as continuing to be involved in the patient's care throughout the terminal illness, whether the doctor had discussed death and dying with the patient and the family, and the level of support the doctor felt he or she had experienced during the care of the patient. The questionnaire items comprised both categorical (e.g., yes or no) and continuous (e.g., 4-point Likert scale) responses.
Doctor Grouping
Each doctor was categorized according to the level of his or her patient's score on a measure for the wish to hasten death. This score was obtained during an independent and blinded interview with each of the 256 participating patients using the Wish to Hasten Death Scale19 and then linked to the participating doctor to form separate doctor-patient pairs for analysis. The six-item Wish to Hasten Death Scale (Table 1) is a modification of a scale previously developed for use with palliative patients.20 This modified scale retained similar wording used in the original scale items except that one item, "Have you discussed with anyone that your desire is to hasten death?" was replaced with the following two items: "Have you ever discussed a wish to die with family or friends?" and "Have you ever discussed a wish to die with your doctor or nurse?" A sixth item, "Have you ever asked your doctor or nurse to do something that might help end your life?" was also included. The inclusion of the three new items enabled increased variability of scores obtained from this scale and broadened the degree of the wish for death measured. The items from the Wish to Hasten Death Scale are stem questions that were administered by a research assistant, who then clarified their time frame and frequency. While the original scale used a clinician's rating of the presence or absence of the item to assess the patient's level of his or her wish to hasten death, the modified scale used a five-point Likert response format (no=0, occasionally=1, often=2, almost always=3, and constantly=4). Scores across the six items were summed to give a composite score of the intensity of the wish to hasten death for that patient. Scores could range between 0 and 24. The items are indicated in Table 1.
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TABLE 1. Questions From the Wish to Hasten Death Scalea and Frequency of Endorsement by 256 Patients With Terminal Cancer
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The patient's group membership was determined on the basis of frequencies of scores on the Wish to Hasten Death Scale as follows: patients with no wish to hasten death (score of 0; N=151, 59%), a moderate wish to hasten death (score between 1 and 4; N=69, 27%), and the highest wish to hasten death (score greater than or equal to 5; N=36, 14%). These thresholds were determined by using the distribution characteristics of the scores on the Wish to Hasten Death Scale, where the majority of the patients scored 0, a linear taper of scores between 1 and 4, and then a plateau from 5 to the highest total of 18. In order to investigate the most clinically distinct groups, a decision was make to compare patients with no wish to hasten death to those with a high wish to hasten death. Consequently, the patients with a moderate wish to hasten death were omitted from subsequent analysis. This decision was made in order to compare the two ends of the spectrum of scores on the Wish to Hasten Death Scale as opposed to comparing three or even four groups on the basis of arbitrary cutoffs where a score of one meant the difference between being in one group or another. The characteristics of the distribution made the high-low grouping easy to distinguish.
Statistical Analysis
Discriminant function analysis was used as a multivariate method of investigating whether a linear model comprising these variables obtained from doctors could discriminate those patients with the highest wish to hasten death from those with no wish to hasten death. Two methods were used to interpret significant discriminant functions: 1) standardized coefficients and 2) discriminant function variable correlations. Standardized coefficients provide information on the relative importance of the variable, while the discriminant function variable correlation assesses the relationship between a variable and the function score. Significant discriminators are variables with higher scores on both indices. Statistical analysis was conducted using the Statistical Package for the Social Sciences (SPSS version 10 for Windows) (SPSS, Chicago, 2000). Statistical significance was set at p<0.05.
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RESULTS
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Group Characteristics
A total of 437 doctors were initially approached to participate as either the referring or nominating doctor. A total of 252 (58%) of these doctors consented to participate, representing 252 individual doctor-patient pairs. Fifty-five patients had nominated two participating doctors. Of the doctors initially contacted, 13% could not be contacted, 7% indicated that they were too busy, 6% failed to return the questionnaires, 5% felt that they did not know the patient well enough, 1% did not wish to participate, and the remainder (11%) offered no reason for not participating.
Table 2 describes the characteristics of doctors from the two groups on the basis of the patients' scores on the Wish to Hasten Death Scale. There were no significant differences in the rates of nonparticipation across the groupings for the wish to hasten death or across the settings of inpatient hospice, general hospital, or home care. Trainee specialists had a higher participation rate (76%) compared to the general practitioners (59%) or specialists (51%) approached ( 2=9.37, df=2, p<0.01), and the rates of participation were higher for the female doctors (69%) than the male doctors (56%) (2=5.56, df=1, p<0.05).
Data Analysis
A series of discriminant function analyses based on the doctors' responses to items covering six separate domains from the self-report questionnaire was initially undertaken as a data reduction mechanism in order to determine the set of variables that best discriminated the level of the wish to hasten death in the doctors' patients. For each of the six analyses, a decision rule was applied in which the variables demonstrating the highest association with the wish to hasten death based on both the standardized coefficient and the discriminant function variable correlation were retained for inclusion in a final model. This data reduction exercise generated a total of 11 variables based around five of the six domains:
- Chief goals of current treatment: (1) the need for "respite care" and (2) "pain management"
- The doctor's perception of factors contributing to the patient's suffering: (1) the perception that family factors contribute to the level of suffering and the perception of the severity of the patient's (2) emotional and (3) physical suffering
- Attitudes toward assisted suicide and euthanasia: (1) the patient indicated to the doctor a wish to hasten death, (2) the doctor's rating of the perceived level of optimism of the patient, (3) the doctor indicated that he or she would assist the patient in hastening death, if requested and legal
- Training and experience: (1) experience and training in palliative medicine and (2) experience and training in counseling or psychotherapy
- Emotional impact experienced in the management of the patient's illness: the doctor's rating of the degree of difficulty in caring for the patient
The items concerning the perception of the patient's social background and support did not meet the statistical requirements for inclusion in the model and contained substantial missing data because of "I don't know" responses.
The 11 variables from the individual discriminant function analyses were included in the final model (Table 3). From this composite discriminant function analysis, a statistically significant function was detected that correctly classified 73% of the cases (2=26.98, p<0.01, canonical correlation=0.42, Wilks's lambda=0.82). When we selected the variables with the highest indices on both the standardized coefficient and the discriminant function variable correlation, the following six variables made the largest significant contribution to the model that predicted patients with a high wish to hasten death: a higher perceived severity of emotional suffering, the patient indicating to the doctor a wish to hasten death, a lower perceived level of optimism, the doctor agreeing to assist the patient in hastening death (if requested and legal) when respite care was a chief goal of current treatment, and the doctor reported less training in psychotherapy.
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TABLE 3. Discriminant Function Analysis of Doctor Variables on the Wish to Hasten Death by 256 Patients With Terminal Cancera
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In order to investigate the combined predictive power of patient- and doctor-related variables, the significant patient variables identified in a previous report from this study19 were combined with the doctor variables that demonstrated the highest association with the wish to hasten death. Based on an earlier discriminant function analysis conducted separately on patient variables,19 the four significant patient variables (depressive symptom scores, level of perceived burden on others, level of family cohesion, and recent admission to inpatient hospice) that demonstrated the highest association with the wish to hasten death were included in a combined discriminant function analysis with the six most significant doctor variables from the current study (Table 4). This final model, which contained three patient variables and four doctor-related variables, significantly discriminated patients without a wish to hasten death from those with a high wish to hasten death (2=46.57, df=10, p<0.001; canonical correlation=0.54).
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TABLE 4. Discriminant Function Analysis of Combined Doctor-Patient Variables on the Wish to Hasten Death of 256 Patients With Terminal Cancera
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The results of the discriminant function analysis indicated that only two of the clinician variables were not significant on the basis of low discriminant function variable correlations. These were "patient indicated to doctor a wish to hasten death" and the "provision of respite care as a chief treatment goal." The patient's perceived level of burden on others, his or her level of depressive symptoms (scores on the Hospital Depression and Anxiety Scale19), and the level of family cohesion (score on the Family Relationship Index19) retained statistically significant association with the wish to hasten death in this model. The combined model correctly classified 81% of the patients (canonical correlation=0.54) in comparison to the separate doctor and patient data that correctly classified 73% (canonical correlation=0.42) and 78% (canonical correlation=0.46) of the patients, respectively.
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DISCUSSION
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There is a considerable body of work that highlights the importance of the doctor-patient relationship in facilitating the patient's adaptation to illness.6,13 There is further theoretical speculation that the expressed wish to hasten death may perform a communicative function whereby it acts as an indicator of the patient's fear, helplessness, and loss.2,21,22 The unique aspect of this study was the investigation of the role of a set of variables reported by treating clinicians in predicting a wish to hasten death among terminally ill patients. For this purpose, a method was employed that investigated aspects of the doctor-patient dyad from the doctor's perspective, such as communication, perception of patient needs, and the training or skills that the doctor brings to this situation.
Of interest, the doctor's perceptions of the patient's response to his or her illness, as reported in the variables ("level of optimism" and "severity of emotional suffering"), were key variables. This association may indicate that the doctors are accurate in their perception of the hopelessness associated with their patient's wish to hasten death. The identification of emotional factors, rather than physical symptoms, as a cause of the patient's suffering is also noteworthy and indicates that the doctors' perceptions support research among terminally ill patients where emotional distress, rather than physical symptoms, is the chief clinical factor associated with a wish to hasten death.1,2,5 Furthermore, the multivariate analysis indicated the significant discriminatory power of specific features of the treating doctor and his or her experience in treating the patient. Less training in the psychological aspects of medicine and counseling, as reported by the doctor, was significantly associated with a high reported wish to hasten death by the patient.
A particularly interesting finding was the role of the doctor's stated inclination toward a willingness to hasten the death of this particular patient if it were legal to do so and if a request by the patient was made. This may suggest that in a setting where there is a greater perception of a patient's emotional distress and hopelessness, combined with a doctor's limited psychological training and his or her own difficulty in caring for the patient, the doctor may be more inclined to hasten the death of the patient. Furthermore, it also is possible that the patient's hopelessness may engender a greater level of hopelessness in the clinician. A doctor overwhelmed by the patient's unaddressed emotional distress, with limited training in these areas, may be more inclined to favor hastening death for the patient. Because the doctor's responses were assessed separately and blind to knowledge about the patient's wish to hasten death, this finding is important in suggesting the potential interaction between the doctor's inclination to hasten death and the patient's wishes. The findings suggest that an attitude that conveys endorsement of the wish to hasten death on the part of the doctor may facilitate that stance on the part of the patient.
The significance of the hospice setting needs further discussion. This was the setting in which the patient was assessed and represented patients newly admitted to the hospice setting (usually within the previous 48 hours). The findings do not necessarily reflect on the care received in the hospice but suggest a combination of factors associated with this stage of illness and factors that may contribute to the decision to admit to the hospice, such as escalating distress and respite needs, rather than physical symptom severity alone.
A number of limitations of the study need to be acknowledged. The study used a cross-sectional design, and as a result, conclusions regarding any causative links in the associations detected must be interpreted cautiously. As a cross-sectional design, a limitation of this study was that it was not possible to follow the course of the wish to hasten death and the factors that predicted the persistence or resolution of the wish to hasten death nor the patient's course of illness. Furthermore, the instrument used to measure the wish to hasten death has not been widely used in this population and requires further validation. The response rate among doctors also needs to be considered in interpreting the findings. A limitation of the statistical analysis combining patient and doctor variables is that it relies on the specific characteristics of the one data set that was analyzed separately for the patients and doctors with only significant variables used in the combined analysis. This was not considered a significant threat to the statistical validity of the analysis. Ideally, the study would have been replicated in another study group and the combined analysis conducted with that group, but this was not possible. Finally, some methods limitations should be acknowledged. The threat to statistical validity caused by multiple analyses of the same data set was raised earlier, but systematic errors due to the low response rate of the doctors and the lack of validity-related psychometric data for the questionnaire items should be noted.
The study did not directly assess the doctors' levels of psychological distress or symptoms. This would have provided valuable additional data exploring factors that may underlie the doctors' responses. The psychological demands on doctors caring for dying patients have been well documented7,13,15 and when linked with these findings, they suggest that efforts to enhance support, training, and supervision of doctors are likely to have indirect benefits on patient well-being but require further investigation in this setting.
Despite these caveats, it is clear from the combined analysis that there is additional value when we examine both patient and doctor variables in one model. Combining the most significant patient and doctor variables into a single model resulted in an enhanced and more comprehensive predictive model compared to assessing patient and doctor variables separately. This is evidenced by the percentage of accuracy of group membership, which was highest when the combined variables were used (81%) compared to when only patient variables (78%) or only doctor variables (73%) were used to discriminate between the group with no wish to hasten death and the group with a high wish to hasten death.
A number of questions for consideration and future study are presented. First, is the doctor's inclination to support a patient's wish to hasten death a personal response to the limitations they experience in offering other forms of care when confronted with a patient's suffering? Is it a doctor's response to helplessness when faced with depression and demoralization and a limited set of skills to identify and address these problems? What effect does the persisting severe emotional distress experienced by the patient have on the treating clinician, especially when feeling ill equipped to respond effectively? Second, what factors initiate a discussion of a wish to hasten death between a doctor and a patient and to what extent does the doctor's personal attitude toward hastening the death of this patient provide a context of reinforcing hopelessness and a subtle encouragement for a discussion of hastened death as a solution for the patient?
The findings we present cannot be interpreted in isolation from the chief role of patient characteristics in the development of the wish to hasten death. However, as was hypothesized, these patient factors do need to be investigated within the context of the doctor-patient interaction as an arena within which the patient's concerns are expressed, reviewed, and negotiated. The findings suggest that both patient- and clinician-related variables, when combined within a multivariate analysis, demonstrated a greater level of association with the wish to hasten death than both sets of variables alone. Patient characteristics, such as the level of depressive symptoms, the perception of family relationships, and the perception of burden caused to others, remain significant variables in this model. These variables represent substantial clinical issues frequently encountered in palliative care practice. The level of burden of the illness on others, as rated by the patient, demonstrated the strongest independent association with the wish to hasten death, further supporting the role of interpersonal factors (whether perceived or otherwise) in understanding the factors associated with the wish to hasten death. The more speculative aspect of this study concerns the clinician-patient interaction in palliative care. The findings from this study suggest that clinician-related variables continue to have a significant effect even when these significant patient variables are included in the analysis.
The findings from this study provide a basis for further investigation of the role of the doctor in the persistent wish to hasten death and, conversely, the impact of the doctor on the patient's suffering and the steps that may be undertaken to address this. Models of supervision, access to support and training regarding communication skills, recognition and treatment of common psychiatric syndromes in this population, and clinical skills in discussing and responding to the existential distress of the dying patient represent relevant future directions in clinical care.7,15
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ACKNOWLEDGMENTS
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Supported by the Queensland Cancer Fund, the National Health and Medical Research Council of Australia (grant 102464), the Princess Alexandra Hospital Research and Development Foundation, the British Red Cross Trust Fund, Mt. Olivet Hospital, and the University of Queensland.
The authors thank the patients and doctors who were part of this study, the staff from the Mt. Olivet Inpatient Hospice Unit, Home Palliative Care Service, and the Princess Alexandra Hospital Palliative Care Consulting Service for their cooperation.
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ABSTRACT
INTRODUCTION
