Author Affiliation: Center to Improve Care of the Dying, RAND, Arlington, Va.
Perspectives on Care at the Close of Life
is produced and edited at the University of California, San Francisco, by
Stephen J. McPhee, MD, Michael W. Rabow, MD, and Steven Z. Pantilat, MD; Amy
J. Markowitz, JD, is managing editor.Perspectives
on Care at the Close of Life Section Editor: Margaret A. Winker, MD,
Deputy Editor, JAMA.
The case story of a 47-year-old man with advanced rectal carcinoma illustrates
the professional services and care system strategies available to help clinicians
serve patients coming to the end of life. For this patient, who understands
his prognosis, primary care physician services include (1) prevention and
relief of symptoms, (2) assessment of each treatment before and during implementation,
(3) ensuring that the patient designates a surrogate decision-maker and makes
advance plans, and (4) preparation of patient and family for the time near
death. Good care may entail enduring unavoidably difficult times with patients
and their families.
Enrollment in a hospice program requires that decision-makers
confront the prognosis and their uncertainties about it, consider the desirability
of other services, recognize variations among available hospice programs,
address financial issues, and weigh the distress of patients and loved ones
at being labeled as "dying." Hospice provides competent, continuous, and reasonably
comprehensive care, but it has some constraints.
Function and symptoms for
those living with serious chronic illness at the end of life generally follow
1 of 3 trajectories: (a) a short period of obvious decline at the end, which
is typical of cancer; (b) long-term disability, with periodic exacerbations,
and unpredictable timing of death, which characterizes dying with chronic
organ system failures; or (c) self-care deficits and a slowly dwindling course
to death, which usually results from frailty or dementia. Effective and reliable
care for persons coming to the end of life will require changes in the organization
and financing of care to match these trajectories, as well as compassionate
and skillful clinicians.
Lynn J. Serving Patients Who May Die Soon and Their FamiliesThe Role of Hospice and Other Services. JAMA. 2001;285(7):925-932. doi:10.1001/jama.285.7.925