Annals of Long Term Care

INTRODUCTION

Background
Dying is the final portion of the life cycle for all of us. Providing excellent, humane care to patients near the end of life, when curative means are either no longer possible, or no longer desired by the patient, is an essential part of medicine. The American Geriatrics Society (AGS) recognizes that most people near the end of life want to live as fully as they can. They want their health care providers to honor their wishes and goals and to help them maintain their dignity and independence while relieving symptoms and maximizing comfort. For physicians and health care providers to provide excellent care to dying patients and their families, they need expertise as well as compassion. Physicians who care for dying patients often find this work fulfilling, a source of pride, and even a privilege. Making excellent care for dying patients regularly available will require improvements in systems for service delivery and in professional education.

DEFINITIONS

Patients who are dying
Within this document, people are considered to be dying when they are sick with a progressive condition that is expected to end in death and for which there is no treatment that can substantially alter the outcome. Thus, people are dying when they have illnesses such as advanced dementia or severe congestive heart failure, in addition to illnesses more routinely recognized as terminal, such as advanced cancer. Care of dying patients also encompasses patients who have elected to forgo available treatments that might forestall death, such as dialysis for end stage renal disease.

Palliative care
Within this document, palliative care refers to care directed toward the quality of life of patients who are dying, including the relief of pain and other symptoms, attention to the psychological, emotional, social and spiritual needs of the patient, and the provision of support for the dying patient and the patient’s family.

PATIENT CARE ISSUES

POSITION 1
The care of the dying patient, like all medical care, should be guided by the values and preferences of the individual patient. Independence and dignity are central issues for many dying patients, particularly in the elderly. Maintaining control and not being a burden can also be relevant concerns.

Rationale: Optimal medical care of all patients, not just those who are dying, rests on frank and sensitive communication between patients and physicians. For dying patients, this ordinarily entails recognition and discussion of the facts surrounding prognosis and the likely course with a palliative plan of care. The conversations throughout must continue to elicit and respond to the patient’s needs. Physicians sometimes face the challenge of being asked to respect patients’ choices, which may maximize the quality of life and independence at the expense of optimal safety. This tension requires particular thoughtfulness and sensitivity to each patient’s needs and values. When the patient loses decision-making capacity, care should be guided by previous conversations as well as by written advance directives, if available. Decisions made by surrogates should be guided by the patient’s known and previously expressed wishes.

POSITION 2
Palliative care of dying patients is an interdisciplinary undertaking that attends to the needs of both patient and family.

Rationale: In caring for dying patients, physicians must themselves develop a broad array of knowledge and skills and an attentiveness to comprehensive care. In addition, whether or not the patient is enrolled in a formal hospice program, physicians most often should function as members of a team. The team may include nurses, social workers, home health aides, physical therapists, personal caregivers, chaplains, volunteers, and the patient’s family. Each team member contributes the special knowledge and skills of his or her discipline to help meet the needs of dying patients.