Palliative Home Care for Advanced Lung Disease

Abstract

Although chronic lung disease is the fourth leading nontraumatic cause of death in the United States, remarkably little research has been published on the palliative care of this group of patients. Recent identification of 6 attributes of a "good death," derived from interviews with terminally ill patients and their caregivers, provides a framework for an empirical approach to the medical care of patients who die because of chronic lung disease. Palliation begins with frank disclosure of a poor prognosis based on statistical evidence and expressed without undue "framing." Given the uncertainty of prognosis for most chronic lung diseases, medical advance planning for end-of-life care should be encouraged when the median survival of a group of similarly afflicted patients is one year or less. Medical advance planning is best pursued on an outpatient basis as a 3-way conversation between patient, closest family member, and physician. Discussions should cover home versus institutional care, selection of home and institutional care providers, preferences for initiation and continuation of life support, and response of home caregivers to frightening untoward events-the "what ifs." Hospice referral should be considered when a terminally ill patient is generally confined to bedroom or bed and is declining. Symptom management should address dyspnea, cough, pain, insomnia, anxiety, depression, and delirium. Because sustained dyspnea at rest is distressing to caregivers as well as to patients, and is difficult to manage, the option of terminal hospital care should be kept open, even for those who express a preference to die at home.