At the end of life, psychiatrists are often asked to assess a patient’s capacity to refuse treatment, but the role of the psychiatrist in this situation is much broader. Even when a person’s mental capacity is not at issue, subtle and not-so-subtle psychological forces can weigh heavily on life-and-death decisions that may be elucidated with a psychiatric assessment.1,2 In an ideal world envisaged by supporters of physician-assisted death, patients ask for assistance to die because they have weighed the pros and cons of continued existence; finding the option of prolonging life unsatisfactory, they opt for death at a time of their own choosing—an exit with dignity and grace. Although this scenario may happen, it is far from universal. Often, a request for physician-assisted dying or for withdrawal of life-sustaining treatment results more from a fear of the unknown, a need to maintain control, or a misunderstanding of what the future may bring.
Most nonpsychiatric physicians should be able to make competency assessments. However, when a patient appears to be choosing death and when proposed treatment cannot be regarded as futile, an expert in capacity—a psychiatrist—should be involved.3
Ms P was a 44-year-old woman with advanced multiple sclerosis. She was entirely restricted to her bed and needed help with her meals and toileting. Her major activity was to watch daytime television. She was admitted to the hospital because of a urinary tract infection. When the treating team approached her with an intravenous cannula for antibiotics, she batted them away. Her brother, who was her full-time caregiver, told her doc-tors that this reaction was not surprising. She had often told him that if things “got bad” she would not want extraordinary treatment. As the hospital consultation-liaison psychiatrist, I was consulted to ensure that it was reasonable and ethical to withhold treatment.
I have a long interest in end-of-life issues and am a staunch advocate of a patient’s right to refuse treatment or even (when legally permitted) to request physician-assisted dying. The referring physician, therefore, had little doubt that I would agree with his opinion that the antibiotics should be withheld.3,4 When I saw Ms P, however, she exhibited an obvious delirium that the treating team had missed. Her delirium had robbed her of any ability to attend or concentrate. She could not retain or understand information about her treatment options, and it was clear she was not competent to refuse treatment. Moreover, although her brother seemed to genuinely believe that Ms P would not have wanted treatment, he had no evidence for this except a vague recollection of a few casual remarks. I recommended that antibiotics be given to Ms P.
When her delirium cleared, I talked with Ms P again to find out what she would like done in a similar situation. Her speech was dysarthric but clear. Would she want antibiotics again if she found herself in the same situation in the future? “Of course I would,” she said, “I only wouldn’t want treatment if things got really bad !”
Delirium is easily missed, but unlike nonpsychiatric physicians, psychiatrists are trained to recognize it. Because of this training, a psychiatrist probably would not have missed Ms P’s delirium. However, the fact that Ms P’s treating physician missed it is not surprising. Numerous studies have demonstrated that nonpsychiatric physicians routinely overlook delirium.5-8 This is extremely concerning when it comes to evaluating capacity for end-of-life decisions. We know that delirium is likely to rob a person of his or her capacity; that it is common in patients with serious, chronic, and terminal illness; and that frequently it is reversible.9-13
Patients with delirium will almost certainly lack the capacity to make important decisions.14 If a patient lacks capacity, any apparent request to refuse treatment should be ignored, and unless there is a clear advance directive to the contrary, the patient should be treated according to his best interests. Unless treatment can be reasonably regarded as futile, treatment according to best interests means that the underlying cause of the patient’s delirium is addressed and the patient’s mental state restored to normal, if possible. Once capacity has been regained, the patient can be asked directly about treatment preferences.
Capacity concerns in end-of-life decisions are not limited to patients with delirium. The diagnosis of delirium is relatively straightforward in the chronically or terminally ill patient compared with the diagnosis of clinical depression. The overlap in the symptoms of depression and the symptoms of many physical diseases and the similarity between clinical depression and understandable distress combine to make the diagnosis of depression in this population frequently challenging, even for experienced psychiatrists.1,15 It is completely understandable that nonpsychiatric doctors routinely miss clinical depression in patients who are chronically and terminally ill, despite its high prevalence in this population.15-21
As with delirium, clinical depression may erode a patient’s capacity to make decisions about treatment at the end of life. In depression, however, issues around capacity are more subtle and complicated. Often, instead of robbing the individual of the ability to retain and understand information, depression robs the individual of the ability to weigh the choices.22 Evaluating this involves fine-grained inquiries about whether the depression may have significantly altered the patient’s conception of himself or that of the world. This may involve a lengthy series of Socratic questions that are beyond the expertise of most physicians but are familiar ground for psychiatrists.
Most clinical depressions are reversible. If depression has eroded a patient’s capacity to refuse treatment or if he asks for a hastened death, this apparent request should be ignored until the effect of the depression is nullified. A psychiatrist can detect and treat depression.
In most hospitals, a psychiatrist is routinely involved if an otherwise healthy patient presents to an emergency department (ED) after attempting suicide. Part of the psychiatric consultation is an assessment of the suicidal patient’s capacity, but in this setting the assessment of competence is usually a formality. The suicide attempts that result in a person coming to the ED are almost always a result of either intense emotional upset or a serious psychiatric illness. These attempts are rarely the result of what might be a carefully considered decision to end one’s suffering. Patients who attempt suicide are seldom mentally competent.
In most hospitals, however, a psychiatrist is not routinely involved if a patient with a chronic or terminal illness requests an early death.19,23 In this setting, though, the capacity of the person wanting to die is usually a live issue. As such, expertise in assessment is needed most. Many people with a chronic or terminal disease who request cessation of treatment are making a competent decision, but some are not.
Much has been written about the need for psychiatric assessment in physician-assisted dying. It is concerning that neither the Oregon24 nor the Washington25 Death With Dignity Act demands psychiatric review. Psychiatric review should have been mandated as a safeguard in these legislations, as it had been in Australia’s Northern Territory legislation.4,26 However, if psychiatric review should be a compulsory safeguard in physician-assisted dying, then why not in cases of treatment withdrawal? In the context of a missed delirium or clinical depression diagnosis, a patient with chronic renal failure who incompetently refuses dialysis will end up dead just as someone who takes a prescribed overdose. All such patients deserve the best assessment available.
Other issues at the end of life
The cryptic psychological issues relevant to end-of-life decisions extend beyond the individual requesting an early death and to the person’s family and treating team. Although much is made of the possibility of ruthless relatives pressuring their loved ones to opt for an early exit, this sort of pressure is rare in the real world.27 This is not to say that people are not ambivalent about the survival of their family members. Ms P’s brother had given 5 years of his life to care for his sister. He would never have pressured her to die, but it is possible that his honestly held belief that she would not have wanted antibiotics was influenced by an understandable, but deep-seated, ambivalence about her continued survival.
The doctors, nurses, and other clinicians who make up the treating team are human beings. They are prone to deep psychological processes that may affect their judgment, and they usually lack the training to recognize and try to accommodate those unconscious influences. The patient who has frequently left the treating team angry or despairing, and who then requests treatment withdrawal, may be at risk for an unconsciously motivated, too-willing acquiescence to their wishes. The involvement of psychiatrists in treatment withdrawal offers the possibility of these forces to be recognized, explored, and accounted for in the decision-making process.
Psychiatrists are not impervious to their own psychological demons. In the case of my patient, Ms P, the decision to “save” her was tremendously uncomfortable initially, when her incredulous brother stridently opposed my decision. When it became clear that I had been right to save her, it was invigorating and a source of discreet but definite hubris. Conversely, when I have agreed that an otherwise healthy patient with chronic renal failure has the capacity to refuse further dialysis, I have found it a personally harrowing decision. Although we are not free of psychological issues, our training, reinforced by day-to-day practice, gives us the tools to try to recognize and deal with our own issues and to minimize influences that should not overly influence our professional duties.
Taking a role in end-of-life decisions will not always save the patient, but often it will. Competent people have the right to choose to refuse treatment and to choose an early death if that is what they truly want. Psychiatrists should be an important part of protecting that right, and that role is almost as important as the role of saving lives.
References1. Block SD. Assessing and managing depression in the terminally ill patient. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians–American Society of Internal Medicine. Ann Intern Med. 2000;132:209-218.