There are no standards of care for psychological, social, and existential and spiritual care at the end of life.
No training standards exist to formally prepare physicians to identify patients with distress, nor are there standards of competence for those who provide psychosocial and spiritual services at the end of life.
Mental health professionals (psychiatrists, psychologists, psychiatric social workers, and nurses) and pastoral counselors are not included in the end-of-life care team.
There is, as yet, no accountability for the performance of physicians, staff, and institutions in relation to the psychosocial and spiritual care given at the end of life by any regulatory body.
Reimbursement of professional services for psychosocial care is poor to absent (often excluded from medical and behavioral health contracts).
Clinical practice guidelines and standards for the management of distress in end-of-life care must incorporate the psychological, social, existential, spiritual, and religious issues faced by patients—the “human” aspects of care. However, the distress relates to coping with the increasing physical symptoms that, by their own nature, become a major source of distress. Patients and families often say that their greatest fear is having pain that cannot be controlled. Cherny and colleagues (1996) used the word “suffering” to encompass these same issues. They included physical symptoms based on the commonly used term “pain and suffering.”
The word “distress” is chosen because it is less stigmatizing and incorporates “normal emotions” such as worry, fear, and sadness. However, distress can increase along a continuum to become a full-blown psychiatric disorder such as a major depression or generalized anxiety. Sadness of separation and anticipatory grief may increase to severe distress in the family. The normal search for meaning may increase to become an existential crisis with spiritual or religious meanings and require the advice of a pastoral counselor (Rousseau, 2000). This concept has been the basis for the NCCN guidelines and standards for the management of distress (Holland, 1999).
The NCCN practice guidelines (Table 7-2; Figure 7-1) give an algorithm for rapid identification of patients with significant distress leading to referral to appropriate services when significant distress is found. They also provide the first practice guidelines for mental health, social work, and pastoral counselors.
Distress is a word that also describes the emotions that reflect an inability to cope with the threat to life and the search for ways to give it tolerable meaning. The model of Folkman (Figure 7-2) is useful because it provides a cognitive model of the universal process by which we cope with an overwhelming situation and the distress that it causes (Folkman, 1997). The