Caring for People at End of Life

It is crucial that the mental health clinician understand key aspects of the dying person's physical illness and remain vigilant for signs of a psychiatric disorder, which may greatly affect the patient's care and decision making. The clinician should have a working understanding of the nature and course of the patient's medical condition. To provide optimal care, several questions should be clear in the clinician's mind. For example, what is the anticipated course of the illness? Are there features of the illness that will cause physical pain, psychiatric and/or cognitive disturbances, or specific forms of disability? For instance, if the illness is a form of cancer, is it especially likely to cause physical pain? To spread quickly or slowly? Is it locally invasive, or does it spread to distant sites, including the brain which may affect the person's cognitive and emotional functioning? Does the dying person have evidence of a psychiatric disorder, such as delirium, major depression, anxiety, or psychosis? Have causes of symptoms—ranging from adjustment issues, disease-related issues, adverse effects of medications, and preexisting illnesses—been carefully established? Is the main caregiver aware of the potential impact of the medical condition on the psychological well-being and the psychiatric status of the patient? Has appropriate treatment been initiated for the medical condition or for primary or secondary psychiatric processes that coexist?

Beyond accurate diagnosis and appropriate treatment, comfort is an imperative in caring for dying persons. Pain is what many fear most about the dying process. Making every effort to help the person have some control over pain is a positive contribution to the care of a dying patient. Toward this goal, physical and psychological pain should be carefully assessed, using both subjective and objective measures, and then clearly documented for all clinicians involved in the care of the patient. This evaluation may include formal tools, such as measures of quality of life (Appendix A at the end of this chapter presents an example of such a tool). A number of comfort measures should be planned and put in place for the future care of the patient. More than this, however, the patient should understand these measures and the extent to which they are in his or her direct control. Specific steps to facilitate communication about the need for enhanced treatment for pain should be addressed early and remembered explicitly together in the care of the dying person.

The mental health clinician has a special role in tracking the internal experience of the dying person. In one patient, this may mean helping to dismantle barriers to requesting help and pain medications. For another patient, it may mean working through loss, anger, and existential issues. For yet another patient, it may mean helping the clinicians to see the culturally sanctioned comforts valued and needed by the patient. The mental health clinician should remain attentive to psychological, cultural, and social issues from the perspective of the patient. Ultimately this means that the mental health caregiver serves as both an advocate and a healer in seeking and providing comfort for dying persons.

Formally assessing decisional capacity in the context of end-of-life care is a vital role of consultation-liaison and general adult psychiatrists, nurse specialists, primary care physicians, and psychologists with specialized interests in this area. Chapter 4 provides a detailed discussion of the systematic assessment of decisional and voluntarism capacities. Therapists and counselors working with dying persons will also need some sense of patients' strengths and deficits, their ability to make crucial clinical care decisions, and when to talk with the main clinical team about concerns about their changing status.

In thinking about the care of a dying person, the mental health clinicians ideally will ask a series of questions: What is the set of overall strengths and deficits of the patient? What is the patient's decisional capacity, as assessed along the four dimensions of communication, understanding, reasoning, and appreciation? What is the patient's capacity for voluntarism, as assessed along the four dimensions of developmental, illness-related, psychological and cultural, and contextual factors? Has every reasonable effort been made to improve the patient's capacity when he or she is making key treatment decisions? This includes a wide set of activities, such as careful efforts to diagnose and treat overlooked psychiatric conditions; to relieve physical pain; to address grief and psychological pain; to include family, spiritual, and/or culturally appropriate supports; and to minimize use of unnecessary psychotropic medications.

As clinicians committed to understanding the experiences and the ability of our patients to make meaning, mental health caregivers have a special responsibility to ensure that the dying person's values and wishes are clarified regarding end-of-life care. Some dying persons will have thought a great deal about these issues and will have a sophisticated understanding of the kinds of decisions required in modern medical situations. Some other patients will not, for many reasons that relate to psychological defenses and emotional distress to educational level and geographic isolation. Tools such as the values history (see Appendix B at the end of this chapter) and the spiritual history (Table 11-2) are excellent resources for facilitating discussions of these issues with patients, their families, and their caregivers. This allows the voice and preferences of the dying person to be identified and honored, not presumed or usurped. It allows their dignity and personhood to be preserved in the face of great fear and loss. Toward this aim, it is also crucial to ensure that appropriate documentation of the patient's values and preferences exists and is available to assist all clinicians and family members involved in the care of the patient. With the permission of the patient, clinical advance directives and other formal legal documents should be prepared, and multiple copies should be distributed to all appropriate clinicians, health care facilities, and family members.

The experiences of loss are often accompanied by controversy and by controversial decision making, and dying is no exception. The mental health clinician can help anticipate the complex, controversial issues that may arise so that they may be acknowledged and worked on explicitly, respectfully, and with appropriate “rules of engagement.” Every practicing physician has experienced a situation where, just after a constructive, supportive plan has been developed to provide care for a dying person, a late-arriving sibling, an estranged spouse, a beloved child who has been out of the country, or a nephew with aspirations for an inheritance—who has not been involved in the therapeutic planning process—will cry “wait, how can you do this to him?!” In part motivated by fear of litigation, the process comes to a halt, and the positive work of supporting the dying patient can come completely undone. Intensive, prospective efforts to identify key individuals involved, immediately or more remotely, in the patient's life and to identify potential areas of disagreement or controversy are extraordinarily helpful in this process. It is important to note that the personal views of the mental health clinician figure into this as well, and considerable self-understanding of one's own preferences (and biases) regarding palliative care and difficult topics such as rational suicide, assisted death, and euthanasia is essential. The clinician therefore should ask the following questions: Have the tough issues been addressed with the patient and loved ones? Are the views of the patient, of key decision makers (e.g., family members), and of other individuals involved (e.g., the clinical care team, community members) known? If there are sources of controversy, have these been addressed carefully, with specific roles, boundaries, and decision-making processes and options clearly laid out?

The dying person's needs should be the ultimate consideration. It is important for the mental health clinician to determine whether consultation with other people—including loved ones; clinicians from other disciplines; attorneys; rabbis, priests, or other spiritual leaders; and community members—should be pursued for the benefit of the dying person. It may help to mobilize other resources as well, such as palliative care experts and hospice clinicians.