When one of our patients has an incurable illness, we physicians must expand our focus of care beyond the disease to encompass all dimensions of the patient's distress. That is when we begin to deliver palliative care. The World Health Organization defines palliative care as the "active, total care of patients whose disease is not responsive to curative treatment" and notes in a statement that "control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount."1 Consider the case of Mr Joseph Taylor, a 71-year-old man with non–small–cell lung cancer who developed a spinal cord compression manifested by severe back pain. Beyond treating this problem, the clinician interested in palliative care will discover his goals and values, identify sources of suffering, and work with him to find the best solutions.
The first opportunity to practice palliative care will be in telling Mr Taylor and his family the diagnosis. No matter how sensitively you break this news, all of you are likely to feel sad. To the degree that you will have succeeded in establishing a valuable relationship, however, the Taylors will look to you for information and support.
Buckman suggests 6 steps to minimize the distress of this conversation.2 First, make yourself, Mr Taylor, and his family comfortable. Second, determine what he knows, not just what he was told. Third, determine what he wants to know. Fourth, disclose the news, in small chunks and in words he will understand. Fifth, listen to his reactions. If he is angry, realize that he is not angry at you. Sixth, review the next steps. If you know what the plan is going to be, tell him. If not, schedule another meeting. Ask for questions (there rarely are any) and invite him to write down questions for the next meeting.
Further staging indicates continued progression of Mr Taylor's cancer. His physician plans no further chemotherapy but does not tell him that she has nothing more to offer. She discusses both experimental chemotherapy and hospice options with Mr Taylor and his family, offering him not hope of cure but rather the possibility that he will have the time and strength to accomplish the tasks that are important to him. Mr Taylor enrolls in hospice. Hospice seeks neither to prolong life nor to hasten death, but to enhance the quality of remaining life. To be appropriate for hospice care, patients must be terminally ill with a prognosis of 6 months or less. They do not need to be homebound or have a do-not-resuscitate order. For patients at home or in nursing homes, hospices provide nurses, social workers, chaplains, volunteers, home health aides, consultants, medications, equipment, supplies, oxygen, and bereavement care. Inpatient stays and care in a nursing home, designed to provide a respite for caregivers, are often included.
Mr Taylor's pain was well controlled in the hospital, but a month after discharge the pain intensifies. Mr Taylor refuses the opioids suggested by his physician. Patients like Mr Taylor harbor several concerns about opioids that they rarely mention. Common fears include addiction, social isolation from friends, oversedation, and the lost chance to relieve more severe pain by taking opioids later. Through the hospice chaplain Mr Taylor discovers that attending church is a goal strong enough to overcome his fears about opioids. His pain diminishes, and he returns to attending Sunday services.
Regular discussions among the nurse, social worker, chaplain, and the patient's physician are needed to address and relieve most of the sources of physical, spiritual, psychological, and social or financial distress that patients and caregivers experience.
Extensive information about the role of the team and the practice of palliative and end-of-life care can be found in textbooks, handbooks, and a case-based palliative care manual.3
Over the next 2 months, Mr Taylor's pain is well controlled with dexamethasone and an increase in opioids and laxatives. Hospice volunteers help him put his stamp collection in order and finish a cradle for an expected grandchild. His physician's biweekly phone calls have offered much support, and the hospice social worker and chaplain have helped Mr Taylor's family begin to accept their impending loss. Four months after you first met him, Mr Taylor dies peacefully in his sleep.
Mr Taylor relied on his physician and nurse to control the pain from bone and spinal cord lesions, but he faced multifaceted distress during his terminal illness. Interdisciplinary teams can address and relieve this distress and in so doing, provide physicians with significant personal and professional satisfaction.
Abrahm JL. The Role of the Clinician in Palliative Medicine. JAMA. 2000;283(1):116. doi:10.1001/jama.283.1.116-JMS0105-4-1