Major depression and refusal of life-sustaining medical treatment in the elderly
Stuart C Hooper, Kevin J Vaughan, Christopher C Tennant and Janette M Perz
MJA 1996; 165: 416-419
Abstract - Introduction - Methods - Patients and assessment - Follow-up - Statistical analyses - Results - Patients - Intensity of depression - Desire for life-sustaining treatment - Discussion - Acknowledgements - References - Authors' details
Objective: To examine the effect of improvement or recovery
from major depression in elderly patients on their desire for life-sustaining
Design: Prospective case survey.
Setting: Psychogeriatric Service of Hornsby Ku-ring-gai Hospital & Community Health Services and Ryde Hospital & Community Health Services (a community-based service serving an urban population with over 29 000 elderly people).
Subjects: All patients referred with major depression (diagnosed by DSM-IV criteria) and no significant cognitive impairment between October 1994 and January 1995.
Outcome measures: Number of life-sustaining treatments desired before and after treatment of depression in two hypothetical acute life-threatening illnesses (one with a good and the other with an uncertain prognosis), and intensity of depression on the Geriatric Depression Scale (GDS).
Results: 22 subjects completed both stages of the study. Initial depression was severe in five, moderate in 16 and mild in one. GDS scores decreased in 18 subjects after treatment. Mean number of life-sustaining treatments desired by these patients increased significantly from 4.0 to 6.1 (out of seven possible treatments) in the "good prognosis" illness and from 6.4 to to 9.6 (out of 14) overall. The increase in the "uncertain prognosis" illness (2.3 to 3.4) was not significant.
Conclusions: Moderate or severe major depression in the elderly is associated with a high degree of refusal of life-sustaining treatments. Treatment of the depression leads to increased acceptance of these treatments, particularly if prognosis is good.
MJA 1996; 165: 416-419
Decisions about withdrawing or withholding life-sustaining medical treatments have become problematic in recent decades. Dramatic advances in medical technology enable many severely ill patients to remain alive, yet the decision to prolong life is tempered by the finite nature of resources, economic rationalism and the patient's quality of life.
In the United States, it is estimated that decisions to limit medical treatment are made for about 70% of patients who die in hospital.1 In many cases, this is due to patient refusal of further medical treatment and is part of the strong shift towards respecting patients' autonomy and right to self-determination. In all Australian States, there is a common-law right for competent patients to refuse medical treatment, including life-sustaining treatment. In Victoria, South Australia and the Northern Territory, this right has received statutory recognition. In these States, legislation also permits competent individuals over 18 years to make advance directives ("living wills") specifying that in the event of a terminal illness the individual does not wish to be subjected to extraordinary life-prolonging measures.2
However, the potential influence of depressive illness on patients' refusal of life-sustaining treatment is often neglected. In the elderly (who are disproportionately represented among those who have life-sustaining treatment withheld or withdrawn), depression is often not recognised by primary care physicians.3-7 Misdiagnosis is especially likely in the elderly if symptoms are atypical (e.g., cognitive deficits [pseudo dementia], somatisation or anxiety). Further, with depression impairments in decision-making may be under-recognised, as the cognitive aspects of competence (which are emphasised by doctors and courts) may remain intact, while more subtle abilities (such as the ability to assign realistic values or meanings to the risks and benefits of prospective treatments)8,9 may be impaired. Depressed patients may undervalue potential positive outcomes and predict negative outcomes.9 These "affective" aspects of clinical competence are generally not considered as important as the "cognitive" aspects and can be more difficult to detect.10 The negative outlook disappears after recovery from depression, suggesting that it is specific to the illness phase and not a trait of depression-prone individuals.11,12
Case reports have highlighted patients who have initially refused, but later accepted, life-sustaining treatment after recovery from depression.9,15-18 Longitudinal studies of male Veterans Administration patients in the United States found that desire for life-sustaining treatment was not increased by recovery from major depression of mild to moderate severity,13,14 but was significantly increased if the major depression was severe.14 However, the extent to which results of these case reports and longitudinal studies can be generalised is uncertain.
We therefore investigated the effect of recovery from major depression on preferences for life-sustaining treatments in a group of patients referred to an Australian community psychogeriatric service.
Patients and assessment
Subjects for the study were drawn from consecutive patients referred to the Psychogeriatric Service of Hornsby Ku-ring-gai Hospital between October 1994 and January 1995. The Psycho geriatric Service is a community-based service with inpatient facilities, serving an area with over 29 000 elderly people.
- Diagnosis of DSM-IV major depression,19 made by clinical interview with the consultant psychiatrist and senior psychiatric registrar of the Psychogeriatric Service, according to DSM-IV criteria (Box 1). Severity of depression (mild, moderate, severe) was also assessed clinically with DSM-IV criteria;
- Mini-Mental State Examination score (MMSE) > 17.20 This was used to screen out patients with significant cognitive impairment; and
- Informed consent given.
Intensity of depression was assessed with the Geriatric Depression Scale (GDS). This is a rating scale (not a diagnostic instrument) that provides a numerical index of intensity of depression and was designed exclusively for use in elderly patients. It contains 30 questions requiring a yes or no answer, which can be either self- or observer-administered. One-week test-retest reliability of 0.85 and criterion validity of 0.82 have been recorded.21,22
Desire for life-sustaining treatment was assessed by a questionnaire adapted from Lee and Ganzini,13 with simplification of the hypothetical scenarios. Patients were asked to "imagine that you developed a sudden life-threatening illness with an uncertain chance of recovery". They were then asked, "Would you want the following procedures should they be needed?". These comprised intravenous fluids with medication, nasogastric tube, blood transfusions, intensive care, kidney dialysis, mechanical ventilatory support, and cardiopulmonary resuscitation. The question was repeated for a similar illness with a good chance of complete recovery. Desire for life-sustaining treatment was quantified by assigning a point for each treatment desired.
After standard treatment for major depression (including pharmacological agents in all cases and electroconvulsive therapy in two), clinical assessments, GDS and questionnaires were repeated. At least six weeks was allowed before follow-up as the elderly may take longer to respond to antidepressant treatment.
The paired t test was used to compare initial and follow-up GDS scores. The Wilcoxon signed-rank test (a non-parametric test) was used to compare initial and follow-up scores for the life-sustaining treatment questionnaire, scoring 1 for any increase and 0 for any decrease and ignoring patients who did not change. The binomial distribution was consulted, with parameters 0.5 and the number of people who changed preferences.
Of 25 consecutive patients referred with major depression to the Psychogeriatric Service during the study period, 22 were included in the study. Two failed to meet the inclusion criteria (one did not give informed consent and the other did not score sufficiently on the MMSE) and a third died before follow-up. Demographic characteristics of the 22 who completed the study are shown in Box 2. A notable feature was the very high proportion of women in the group (82%).
All but four of the patients were new referrals to the service and 10 (46%) were reporting their first depressive disorder. None had a history of previous prolonged psychiatric hospitalisations or previous suicide attempts. Twelve patients (55%) were treated in their homes, eight (36%) were treated predominantly in an inpatient psychiatric unit and two (9%) predominantly in a medical ward.
Intensity of depression
Severity of the depression was classed as moderate for 16 patients (73%), severe for five (23%) and mild for one (5%). Mean GDS score for the group was 24.4 (SD, 3.3) and decreased significantly on follow-up to 16.7 (SD, 8.0) ( P < 0.0005). Individual GDS scores decreased ("improved") in 18 patients, and 12 of these (55% of the total number) were diagnosed clinically as recovered from major depression, according to DSM-IV criteria.
Desire for life-sustaining treatment
Changes in desire for life-sustaining treatment among those whose depression improved or recovered are shown in Box 3. There were significant increases in the number of interventions desired overall and for the "good prognosis" illness among both the 12 patients who recovered from depression (according to DSM-IV criteria for remission) and the 18 whose GDS scores improved (including six who were not classed as recovered by DSM-IV criteria). There were also increases in the number of interventions desired for the "uncertain prognosis" illness, but the change was significant only in the "recovered" group. Of the 12 patients who recovered, nine had had major depression of moderate severity. The number of interventions desired among these nine also increased significantly overall ( P = 0.05) and for the "good prognosis" illness ( P = 0.04), but not for the "uncertain prognosis" illness.
We found that remission of major depression in the elderly was associated with a significant increase in acceptance of life-sustaining treatments. This increase occurred for both moderate and severe forms of major depression.
However, our study has limitations which should caution against drawing firm general conclusions. The main limitations are the relatively small sample size and the possibility of a gender bias caused by the high proportion of female patients. We also do not know the correlation between responses to hypothetical questionnaires and actual decisions when confronted with an "end of life" situation. However, indicating preferences to hypothetical scenarios is similar to executing a "living will" (also, in effect, hypothetical).
The hypothetical scenarios examined only acute, not chronic, illnesses, and the findings of this study cannot necessarily be generalised to patients who have coexisting life-threatening medical conditions. In addition, the word "uncertain", used to describe prognosis in one of the scenarios, may have been ambiguous, as all prognoses are uncertain. It was chosen to enable comparison with Lee and Ganzini's studies,13,14 but "poor" or "unfavourable" would have been less ambiguous. A further limitation involved the diagnostic assessments, which did not use structured diagnostic instruments.
Our results vary from those of other longitudinal studies.13,14 Ganzini et al.14 found that recovery from major depression was associated with change in preferences for life-sustaining treatments only if the depression was severe. Lee and Ganzini13,14 concluded that, in major depression of mild to moderate severity, "patients should not be discouraged from completing advance treatment directives and that choices by these patients to limit treatment should be respected". However, our finding of a significant increase in the number of life-sustaining treatments desired by nine patients who recovered from major depression of moderate severity suggests that doctors should be cautious about adopting such an approach in the elderly with moderate major depression.
Differences between the results of our study and those of Ganzini et al.14 may have been caused by differences between samples and methods. Their sample had a higher proportion of men (81% versus 18% in our study) and their questionnaire about life-sustaining treatments was more complex, possibly affecting subject comprehension and reducing the sensitivity of the instrument. They used DSM-III-R criteria to diagnose major depression, but the differences between these criteria and the DSM-IV criteria that we used are minor. However, neither set of criteria precisely defines the boundaries between mild, moderate and severe forms of major depression, allowing the possibility of diagnostic bias in classifying severity.
Further, in analysing their data, Ganzini et al.14 defined a clinically evident increase in preference for medical therapy as an increase in desire for a mean of three or more of the 14 possible interventions. A different cut-off (e.g., two or more of the 14 interventions) would have led to different results.
In addition, we allowed a longer time before follow-up than Ganzini et al.14 (mean, 88.5 days versus 24.5 days), and, although we found that degree of recovery measured by GDS was no greater, it is possible that preferences for life-sustaining treatments may take longer to improve than depression. Another possibility is that the longer follow-up period in our study allowed factors other than changes in level of depression to affect preferences.
These studies highlight the potential for depression to influence patient desire for life-sustaining treatments, suggesting that clinicians would be wise to take into account patients' mental state when assessing refusal of life-sustaining treatments. If doubt exists about a patient's decisional capacity, or whether major depression is present, psychiatric consultation is indicated. In the absence of an advance directive (completed before the onset of depression), severely depressed patients' wishes to forgo life-sustaining treatments should not be respected until an attempt is made to treat the depression. In contrast, it appears reasonable to respect the wishes of mildly depressed patients, whereas in moderate major depression consensus is lacking. It would be prudent (until further studies clarify this question) to err on the side of preserving life and to treat moderate major depression of moderate severity before respecting a refusal of life-sustaining treatments. Furthermore, patients with moderate or severe major depression who are planning to write advance directives should be encouraged not to do so until their depression has been treated.
In our patients whose depression "improved", we found no significant increase in number of life-sustaining treatments desired for an illness with uncertain prognosis. Although the lack of significance may have been due to the small sample size, it suggests that the prognosis of the illness should also be considered in clinical settings. When prognosis is so poor that treatment becomes futile, refusal of life-sustaining treatments should be respected regardless of the presence of major depression, in accord with the ethical and legal principle that doctors are not required to administer futile treatments.
The ethical dilemma presented by a depressed patient with dubious decisional capacity who refuses life-sustaining treatments has received little attention. The physician who complies faces the prospect that the patient's decision was biased by the depression and would have reversed on recovery. The physician who does not comply faces the possibility that the request was authentic and the patient's life has been prolonged against his or her wishes. In resolving the dilemma, careful consideration should be given to the severity of the depression, the prognosis of the illness and whether treatment would be deemed futile, and also to any previous directives made by the patient when their decisional capacity was clearly intact.
We acknowledge the generous support of Dr R Russell (Psychogeriatrician, Royal North Shore Hospital), and Dr W Jenneke (Staff Specialist Psychiatrist, Hornsby Ku-ring-gai Hospital).
- Greco P, Shulman K, Lavizzo-Mourey R. The patient self-determination Act and the future of advance directives. Ann Intern Med 1991; 115: 639-643.
- CCH Australia. Death with dignity. Australian Health and Medical Law Reporter. Sydney: CCH Australia Ltd, 1995: paragraph 22-360.
- Regier D, Hirschfeld R, Goodwin F. The NIMH depression awareness, recognition, treatment program. Am J Psychiatry 1988; 145: 1351-1357.
- NIH Consensus Development Panel on Depression in Late Life. Diagnosis and treatment of depression in late life. JAMA 1992; 268: 1018-1024.
- Eisenberg L. Treating depression and anxiety in primary care -- closing the gap between knowledge and practice. N Engl J Med 1992; 16: 1080-1084.
- Nielson C, Williams T. Depression in ambulatory medical patients: prevalence by self report questionnaire and recognition by nonpsychiatric physicians. Arch Gen Psychiatry 1980; 37: 999-1004.
- Rapp S, Walsh D, Parisi S. Detecting depression in elderly medical inpatients. J Consult Clin Psychol 1988; 56: 509-513.
- Appelbaum P, Grisso T. Assessing patients' capacities to consent to treatment. N Engl J Med 1988; 319: 1635-1638.
- Gutheil T, Bursztajn H. Clinicians' guidelines for assessing and presenting subtle forms of patient incompetence in legal settings. Am J Psychiatry 1986; 143: 1020-1023.
- Bursztajn HJ, Harding HP, Gutheil TG, Brodsky A. Beyond cognition: the role of disordered affective states in impairing competence to consent to treatment. Bull Am Acad Psychiatry Law 1991; 19: 383-388.
- Chochinov HM, Wilson KG, Enns M, et al. Desire for death in the terminally ill. Am J Psychiatry 1995; 152: 1185-1191.
- Wilkinson IM, Blackburn I. Cognitive style in depressed and recovered depressed patients. Br J Clin Psychol 1981; 20: 283-292.
- Lee M, Ganzini L. The effect of recovery from depression on preferences for life-sustaining therapy in older patients. J Gerontol 1994; 49: M15-M21.
- Ganzini L, Lee M, Heintz R, et al. The effect of depression treatment on elderly patients' preferences for life-sustaining medical therapy. Am J Psychiatry 1994; 151: 1631-1636.
- Salzman C. ECT and ethical psychiatry. Am J Psychiatry 1977; 134: 1006-1009.
- Weitzel W, Purtilo R. Aggressive treatment of geriatric depression: what limits on intervention? Psychiatr Opin 1979; 160: 9-14.
- Swartz C, Stewart C. Melancholia and orders to restrict resuscitation. Hosp Community Psychiatry 1991; 42: 189-191.
- Baile F, DiMaggio J, Schapira D. The request for assistance in dying. Cancer 1993; 72: 2786-2791.
- American Psychiatric Association diagnostic and statistical manual of mental disorders (DSM-IV). 4th ed. Washington DC: APA, 1994.
- Folstein M, Folstein S, McHugh P. "Mini-Mental State": a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12: 189-198.
- Yesavage J, Brink T, Rose T. Development and validation of a geriatric depression screening scale: a preliminary result. J Psychiatr Res 1983; 17: 37-49.
- Koenig HG, Meador KG, Cohen HF, Blazer DG. Self-rated depression scales and screening for major depression in older hospitalized patient with medical illness. J Am Geriatr Soc 1988; 36: 699-796.
(Received 30 Oct 1995, accepted 3 Jun 1996)
Department of Mental Health, Hornsby Ku-Ring-Gai Hospital, Sydney,
Stuart C Hooper, FRANZCP, Senior Psychiatric Registrar in Psychogeriatrics; now Consultant Psychiatrist, Sydney, NSW; Kevin J Vaughan, FRANZCP, Staff Specialist.
Department of Academic Psychiatry, Royal North Shore Hospital, Sydney, NSW.
Christopher C Tennant, FRANZCP, MD, Professor.
Department of Psychology, Faculty of Arts and Social Sciences, University of Western Sydney, NSW.
Janette M Perz, BA(Hons), Research Psychologist.
No reprints will be available. Correspondence: Dr S C Hooper, 11 Clanalpine Street, Eastwood, NSW 2122.
Received 26 September 2018, accepted 26 September 2018
Publication of your online response is subject to the Medical Journal of Australia's editorial discretion. You will be notified by email within five working days should your response be accepted.