surprise that the “human” side of end-of-life care, dealing with the emotional distress of being forced to consider the meaning of death, has received less attention. To meet patients’ needs for psychological, social, and existential-religious-spiritual concerns, the primary treatment team should include (or have available to it) a psychosocial team that consists of a social worker, a mental health professional, and a pastoral counselor. Currently, the social worker often performs as the entire psychosocial team, but although long distanced from the treatment team, pastoral counselors must come to be viewed as integral members.
Mental health professionals can play an important role in helping dying patients deal with their distress. However, negative attitudes and stigma related to mental health, especially psychiatry, often limit the availability of these services. Medical staff are reluctant to ask for a psychiatric consultation, even when it is highly appropriate, out of concern that a patient may be offended by the request to see a mental health professional. Sometimes, the family sees it as an affront to the patient at a time of grave illness. These barriers, similar to those in pain management, are compounded by other fears. Patients and families often fear psychotropic medication. They worry that the drugs used will be addictive and “make me a zombie.” Their attitudes are expressed by comments such as “I have to be strong” and “what can be done to change things?”
Another barrier is perceived cost. Many institutions regard this human aspect of care as expendable, expensive, and unnecessary. As a consequence, too few social workers, mental health professionals, and pastoral counselors are available to provide the consultation and treatment that would benefit patients and their families when the severity of distress exceeds that readily managed by the primary team. This is especially true of bereavement services, as social workers are reduced as a cost-saving measure.
A major problem in palliative care is the underrecognition, underdiagnosis, and thus undertreatment of patients with significant distress, ranging from existential anguish to anxiety and depression. This situation continues to exist despite the fact that when dying patients themselves were asked their primary concerns about their care, three of their five concerns were psychosocial: (1) no prolongation of dying; (2) maintaining a sense of control; and (3) relieving burdens (conflicts) and strengthening ties (Singer et al., 1999).
Even though patients and families express clearly their wishes for attention to their nonmedical concerns and for the inclusion of this domain as a core element in palliative care, there remains significant evidence that inadequate attention is given to these issues, in spite of lip service and good intentions. The evidence is as follows: