Professional organizations representing psychology, psychiatry, oncology social work, oncology nursing, and chaplaincy must become familiar with and endorse the clinical practice guidelines modified from existing ones for end-of-life care, to ensure dissemination and education among these disciplines.
Any patients’ bill of rights must include the right to management of their distress as a symptom of equal concern as a physical symptom that receives prompt and competent care; they must be educated to ask for these services.
Accountability: the appropriate regulatory bodies must include performance standards for professionals in relation to their communication and sensitivity to care of the nonphysical symptoms (psychosocial and spiritual) of patients at the end of life.
Research should be pursued to test the feasibility and implementation of practice guidelines for management of distress developed for each discipline (mental health, social work, pastoral counseling) giving supportive services. In view of the acknowledged difficulties in implementation of clinical practice guidelines to manage distress and the unique stigma around psychosocial and spiritual services, it is essential that research be undertaken to address these barriers.
Delirium, depression, and anxiety are extremely common at the end of life and are frequently underrecognized, underdiagnosed, and undertreated, leading to unnecessary distress for patients and families. Research into recognition and treatment of these symptoms through controlled trials is important to improve care at the end of life.
Clinicians are equally responsible for the recognition and treatment of distress in patients’ families who bear an increasingly heavy burden of caregiving with its own psychological and physical toll; guidelines for inquiring about distress and educating families must be a part of the research agenda in end-of-life care.
Table 7-2 outlines the status of clinical practice guidelines for management of pain, fatigue, nausea and vomiting, and dyspnea. The focus here is on the emotional distress caused by these symptoms—the physical suffering that we associate with the dying process (Twycross and Lichter, 1998). Patients and families struggle with the concern that these symptoms will not be adequately controlled, with fears about their cause and the potential for their becoming intolerable, and with sadness and anger about diminishing physical function. Thus, the common symptoms of pain, fatigue, nausea, and dyspnea are often the catalyst for severe distress or “suffering of the mind.” They lead to severe distress requiring both traditional medical inter-