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West J Med. 2001 November; 175(5): 320–325. | PMCID: PMC1071609 |
Copyright © Copyright 2001 BMJ Publishing Group Evidence-Based Case Review Depression, decision making, and the cessation of life-sustaining treatment Laurie Rosenblatt1 and Susan D Block1 1 Dana-Farber Cancer Institute and Brigham and Women's Hospital Harvard Medical School 44 Binney St Boston, MA 02115 Why so large cost, having so short a lease,....? Shakespeare's Sonnets, 146 [Poor soul, the center of my sinful earth]
C W, a 50-year-old divorced mother of 2 grown daughters, has metastatic ovarian cancer, now recurring for a third time. Recent chemotherapy has reduced her tumor burden. What remains impinges on her sacral plexus, causing pain that can be controlled only with high doses of opioids. Even with these high doses, she reports daily pain in the range of 6 to 8 on a 10-point scale. Before this recurrence, her exciting job gave her a sense of purpose. In contrast, she feels she has failed as a mother. Her older daughter has a history of drug abuse and has failed multiple detoxification programs. Her younger daughter quit college without graduating. Neither daughter has a consistent relationship with her mother. C W has lived alone since her husband left her 10 years ago. Her occasional relationships with men have not lasted, but she has many loyal friends. C W has been in psychotherapy for many years and has had 2 brief trials of antidepressant medication that she did not find helpful. Since her second recurrence, she has had a major depression that has been difficult to treat. She wakes early. Her appetite is poor, and she has lost weight. In reviewing her life, she says, “I'm not sure why I've been alive.” Although her oncologist thinks that she has many months of good-quality life ahead of her, C W talks about death as if it is imminent and welcome. She rarely mentions the friends who stop by and says she does not enjoy their visits. She looks forward to nothing, but denies suicidal wishes. Her oncologist has suggested another round of chemotherapy, expecting that it will either shrink her remaining disease or, at least, sustain her current state. C W says she does not want to feel sick and lose her hair again. She refuses treatment, knowing that her decision will shorten her life.
We performed a MEDLINE search from 1990 through January 2001, limiting it to literature in the English language and about human subjects, using the search terms depression, end-of-life care, hastening death, decision making, patient competency, antidepressant therapy, and palliative care. We searched bibliographies of the chosen articles for further relevant articles. In addition, we reviewed general texts in psycho-oncology and medical decision making at the end of life, as well as classic articles on psychodynamic principles in medical settings. HOW SHOULD A PHYSICIAN RESPOND TO A PATIENT'S REQUEST TO DISCONTINUE LIFE-SUSTAINING TREATMENT? When confronted by a patient such as the patient described here, a physician often feels contradictory responsibilities—to respect and support the patient's wishes, but also to ensure that the patient is making a competent and autonomous decision. Requests for the discontinuation of life-sustaining treatment require a process parallel to that for requests to hasten death through physician-assisted suicide. This process could include the following steps: - Clarifying the patient's reasons for discontinuing treatment
- Treating pain and other symptoms, then reassessing
- Assessing and treating psychological, social, and spiritual distress, then reassessing
- Assessing the physician-patient relationship
- Assessing the patient's decision-making capacity
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If there is still no change in the patient's desire to discontinue life-sustaining treatment, the patient's decision should be respected. Clarifying the patient's reasons for requesting that treatment stops Many factors in this patient's history may be contributing to her wish to stop treatment. Her pain is inadequately controlled, relationships with family members are strained, her support system is weak, and she has symptoms of depression. Grief, depression, anxiety, organic mental disorders, and family and personality issues have all been implicated in patients' decisions to hasten death.1-5 Financial concerns may also play a role. Treating pain and other physical symptoms Poorly controlled physical symptoms can be a major source of suffering for patients with life-threatening illness (see box).6-8 Uncontrolled pain is a risk factor for suicide in terminally ill patients.9-11 Appropriate pain control is a first step in evaluating and ameliorating conditions that influence decisions to stop life-sustaining treatment.12,13 | Issues to consider when a patient requests stopping life-sustaining or life-prolonging treatment1 |
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| Uncontrolled physical symptoms | - Pain
- Nausea
- Dyspnea
- Insomnia
- Constipation
| | Difficulties in relationships | - Anger
- Fears of being a burden
- Abandonment
- Guilt
| | Psychological disorders | - Grief
- Anxiety
- Depression
- Organic mental disorders
- Substance abuse
- Personality disorders
| | Spiritual or existential issues | - Anger at God
- Spiritual doubt
- Lack of meaning and purpose
- Guilt and regret
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| Factors that increase suicide risk in people with terminal illness24,25 |
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- Depression
- Male gender
- Advanced age
- Hopelessness
- Delirium
- Exhaustion
- Pain
- Preexisting psychiatric diagnosis
- Family history of suicide
- Diagnosis of acquired immunodeficiency syndrome (AIDS) or cancer
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A pain management specialist adjusted C W's medication, and after 2 weeks, she reported her daily pain as 3 to 4 on a scale of 10. She refused further adjustment, fearing that her clouded thinking would recur. A subsequent nerve block further reduced her pain. Improved pain control and decreased drowsiness allowed C W to consider a trip to visit friends out of state but did not change her decision to stop chemotherapy.
Assessing and treating psychological, social, and spiritual distress Is the patient suffering from depression? Untreated depression is the most commonly identified reason that leads patients to seek hastened death.14-18 The estimated prevalence of depression among the terminally ill ranges from 20% to 50%.19-23 Suicide rates are significantly higher in patients with advanced illness than in the general population (see next box). This patient's situation illustrates the difficulties in making the diagnosis of depression in terminally ill people. Biologic symptoms of depression, such as weight loss, poor appetite, fatigue, and sleep disturbance, may also be caused by cancer, the effects of chemotherapy and other medication, and chronic pain and are therefore not useful diagnostically. C W feels despair regarding her own life and feels responsible for the lives her daughters lead. She does not enjoy friends or look forward to pleasures still available to her. Her psychological symptoms of hopelessness, guilt, and lack of enjoyment indicate a diagnosis of depression.26
In terminally ill people, psychological symptoms of depression are more important than biologic ones in reaching a diagnosis.27 When these psychological symptoms are pervasive and out of proportion to the actual situation, they are indicators of major depression.28 Chochinov and co-workers found that simply asking, “Are you depressed?” provided a remarkably useful assessment of depression in terminally ill patients (sensitivity and specificity of 100% in a study of 197 terminally ill patients).29 Physicians' own feelings of hopelessness, aversion, boredom, anger, or lack of interest may be valuable indicators of patients' distress ( table 1). 31-33 Oncologists, independent of the reality of their effectiveness, are likely to feel dissatisfied with their own performance during visits with depressed patients. 34 | Table 1Physician responses to patient distress31 |
How should depression be treated in a patient with a terminal illness? Drug therapy for depression is effective, and the many available medications have few side effects. However, few of the reported trials of effectiveness meet the rigorous standards for evidence-based practice.35-37 Psychotherapy, either individually or in groups, may play a beneficial role, but methodologic difficulties make outcomes research challenging.38 Psychostimulant drugs and selective serotonin-reuptake inhibitors (SSRIs) are the most commonly used pharmacologic treatment of depression in terminally ill people. Their use is described in the next box and table 2. | Table 2Antidepressant drugs used to treat terminally ill patients14 |
C W accepted treatment with sertraline hydrochloride. After 5 weeks, although frequently sad, she took a trip to visit friends. But she continued to describe her life in globally negative terms and to refuse further chemotherapy.
For patients with symptoms lasting more than a few months but who have severe nonpsychotic depressive symptoms, a course of psychostimulant medication should be started and SSRIs added after an initial response. | Diagnosis and management of depression in patients with a prognosis of terminal illness |
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| Diagnosis | - Rule out conditions (described in the first box) that exacerbate low mood
- Ask
- “Are you depressed?”29
- “How do you see your future?”
- “Is there anything you enjoy or look forward to?”
- “What do you imagine is ahead for you with this illness?”
- “What aspects of your life do you feel proudest of?”
- “What aspects of your life do you feel most troubled by?”2
- Inquire about suicidal ideation and intent
| | Management | - Start at low dose of antidepressant medication and work up slowly to standard doses as needed For patients with symptoms lasting a few months or less—psychostimulants (table 2)
For patients with symptoms lasting a few months or more—SSRIs (table 2) - Consider psychotherapy (family, supportive, or cognitive behavioral, depending on the situation)
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What other issues might require assessment? Existential and spiritual distress may contribute to suffering of patients at the end of life.51 Problems in relationships with family, friends, and care providers may lead to a request to hasten death.16 Deficits in social support and fear of being a burden are also important concerns of terminally ill patients.50 C W feels that she has failed as a parent. She is angry and disappointed that her younger daughter is unresponsive to her increasing need for financial and emotional support. Individual and family counseling helped C W to be clear and more realistic about her wishes for support from and intimacy with her daughter.
Exploring characteristics of the physician-patient relationship The physician's ability to provide a vision of a tolerable future, including the best possible death for the patient, may allow the patient to feel that life continues to be worth living. Alternatively, the physician's premature acquiescence to a request to stop treatment may contribute to the patient's desire to stop treatment and end her life.1 Physicians should be aware that their communication with patients can affect patients' decision-making process. Assessing a patient's decision-making capacity The central components of decision-making capacity include being able to communicate a voluntary decision and understand medical information, having the capacity to reason and deliberate about the information, and holding a stable set of values.52-55 Physicians should beware of their own biases when making such determinations.56 The patient in this report does not suffer from a cognitive disorder that impairs her ability to comprehend and retain information or to express a decision. But her depression and hopelessness may be coloring her worldview and causing her to forgo treatment because she is unable to appreciate its benefits. Thus, she may be making a decision based on an unrealistically pessimistic cost-benefit assessment, a decision that differs from one she would make if she were not depressed.57,58 The effect of depression on a patient's decision should be considered and discussed with the patient. The relationship between depression and the wish to receive life-sustaining treatments has ranged from a desire for less treatment59-62 to a desire for more life support.63 Depression may also have no effect on treatment decisions.64 The situation is further complicated by variations in desire for end-of-life care by race, age, and ethnic group.46,65 Experts generally agree that although severe depression may have a significant effect on decisions in some circumstances, the mild and nonpsychotic depression common in ill patients cannot be assumed to lead to impaired judgment regarding medical treatment.58,66 C W and her physicians have done what is possible in the way of symptom control; diagnosis and treatment of depression; and assessment and treatment of spiritual, financial, and interpersonal concerns. C W remains depressed. Can she make her own decision? C W's physicians must navigate between protecting her from harmful consequences of her decision and allowing her to control how her life will end. Refusing chemotherapy can be expected to shorten her life. However, chemotherapy has its own burdens and is not in this case curative. C W understands that in choosing chemotherapy, she may gain time and have less pain, but she will also lose her hair, risk nausea, and be fatigued. She understands that she can choose to continue treatment at any time in the future, but by then, her disease may have further progressed. Through much of her life, this patient has gained a sense of worth from her ability to handle difficulties on her own, and illness has been, for her, an experience of helplessness, insignificance, and dependency. She has struggled with depression for decades and is aware of the ways in which mood influences her perceptions. In deciding that C W's choice should be respected, her psychiatrist reasoned that the patient's decision is consistent with her long-term values in which self-determination is central and that it is reasonably in accord with her well-being, although her decision might not maximize her length of life. Depression is influencing her decision without making her incompetent to decide.
WHAT IS THE ROLE OF SAFEGUARDS IN EVALUATING REQUESTS TO DISCONTINUE LIFE-SUSTAINING TREATMENT? Discontinuation of therapy is a common medical procedure that leads to hastened death. Although physician-assisted suicide represents an extreme form of hastening death, we look to safeguards such as those provided in the Oregon Death With Dignity Act67 that might be considered in evaluating a patient's desire to stop treatment. These include: - Medical consultation to ensure accurate assessment and information
- Psychiatric consultation
- Family meeting to discuss ending treatment
- Waiting period to allow the patient, her family, and treating physicians to reconsider options in the light of additional consultations and meetings
- Ability to reverse the decision
- Ensuring that the desire is an expression of core personal values
These steps minimize the risk that the patient's request stems from a reversible condition. They will not be necessary in most situations, nor are they designed to interfere with competent patients' right to refuse treatment. But clinicians recognize that patients regularly make decisions in states of vulnerability, when decision-making abilities may be compromised. How do we protect such patients from making an irrevocable decision that they might not make if they were pain free, less depressed, or better connected? The dangers of paternalism are real, but potentially ameliorable suffering occurs at the end of life, and treating such suffering is a core professional responsibility. Additional resources Video Web sites |
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SUSTAINING TREATMENT?
