The Care of Dying Patients
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.
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.
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
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.
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. Together, team members provide care for the patient and assist the family in coping with the patient’s dying and death. Family members (with “family” defined by the individual patient) usually play a critical role in both providing care for dying patients and in making decisions for dying patients who have lost decision-making capacity. Providing support for the patient’s family, including a period after the patient dies, is an important aspect of the care of dying patients.
Care for dying patients should focus on the relief of symptoms, not limited to pain, and should use both pharmacologic and nonpharmacologic means.
Rationale: Pain, anxiety, depression, dyspnea, constipation, and other symptoms can all be significantly ameliorated, if not eliminated, in the vast majority of dying patients. Symptoms should be treated as vigorously as is appropriate to the patient’s situation and preferences to maximize comfort, even if the unintended effect of these efforts is, on rare occasions, the hastening of death.
HEALTH CARE DELIVERY ISSUES
Dying patients should be guaranteed palliative care as part of any health care coverage, without care being conditioned on the financial status of the patient. Reimbursement and administrative arrangements should encourage continuity across sites and time, so that commitments to patients can be honored regardless of point of care.
Rationale: Palliative care is often provided most appropriately in the patient’s own home, a setting where reimbursement is inadequate under many existing insurance plans. Dying patients should be able to receive palliative care in the home, the hospital, and the nursing home, depending on the needs and preferences of the patient, without a disruption in the continuity of the patient’s care.
Patients and families are presently faced with major financial obstacles to choosing palliative care, while payment for continued highly technological, acute care (e.g., dialysis, ventilator care, etc.) is readily available. Physician reimbursement should also be modified to promote palliative care. Like other forms of primary care, palliative care is time-consuming, does not involve highly reimbursed procedures, and requires substantial counseling of patients and families.
Administrative, regulatory, and reimbursement structures often serve as barriers to palliative care and should be reshaped.
Rationale: Current arrangements for care make it difficult to provide symptom management, continuity, or advance planning. Indeed, current reimbursement structures make it financially problematic to gain a reputation for excellent care of the very sick, except perhaps in hospice. Conventional fee-for-service payments make sustaining team care over time very difficult, and managed care in Medicare pays no more for very sick persons than for healthy ones. Requirements regarding availability of family and a home for caregiving regularly prevent some patients from receiving palliative care through hospices. Uncertain or unavailable estimates of prognosis also may serve inappropriately to exclude patients from hospice care.
Many laws and regulations made for other purposes end up making good palliative care difficult. For example, regulations intended to promote adequate nutrition for nursing home residents can cause great hardship for dying nursing home residents. Laws intended to make it more difficult to divert narcotics into abuse can also make it very difficult to ensure adequate supplies for persons who need pain relief. Laws and regulations like these should be rewritten or revised. In addition, laws and regulations could place responsibility for good service upon specified service providers. At present, most shortcomings in care are unnoticed and never addressed. Care systems should be judged on the basis of performance with regard to issues like pain management, advance planning, and continuity. This information should be available to patients and families as well as professionals, and it may well be appropriate to mandate data collection and suitable corrective action for the shortcomings that are identified.
Physicians and other health care professionals, at all levels of training, should receive in-depth, insightful, and culturally sensitive instruction in the optimal care of dying patients.
Rationale: More attention has been paid in recent years to improving education in the care of dying patients. This instruction can still be expanded and targeted to reach a broader audience. Health care professionals in training and in practice need adequate knowledge of symptom management (especially pain control and adequate use of opioid analgesics), ethical issues relevant for end-of-life care, and use of multi-disciplinary teams. They ought to have adequate training in communication skills necessary for delivering bad news, discussing advance directives, and exploring patient wishes and goals. They should know their own attitudes towards and reactions to death and care of the dying, and have a personal process for grief over the loss of patients cared for. Instruction in the physician’s role during the dying process and in guiding the family through bereavement are necessary. The importance of knowledge about the care of dying patients should be reinforced by evaluating it on board exams and other specialty certification exams.
The public, including our patients and our colleagues, needs to be educated regarding the availability of palliative care as an important and desirable option for dying patients. The AGS should be active in this education.
Rationale: It is the position of AGS that this kind of educational effort would benefit many by dispelling the notion that the only options available to dying patients are continued futile therapy in a medical setting or turning to assisted suicide or euthanasia (see related position paper).
Adequate funding for research on the optimal care of dying patients is essential to improving end of life care.
Rationale: Much of the information base needed to inform patients and physicians regarding optimal care of dying patients does not yet exist. Studies documenting the outcomes of various models of care delivery, medications, and treatment settings, focused on the experience of the dying patient and significant others, should take place. Although traditional biomedical research on symptom relief is needed, much of what is already known about symptom relief is not implemented effectively because of professional ethical concerns about aggressive symptom management and institutional barriers to the provision of palliative care. Research to identify these barriers and to evaluate educational approaches and interventions to promote palliative care, is needed.
Developed by the AGS Ethics Committee and approved by the AGS Board of Directors in May 1994. Reviewed and updated in May 1998 and November 2002. The American Geriatrics Society, The Empire State Building, 350 Fifth Avenue, Suite 801, New York, NY 10118, Tel: 212-308-1414, Fax: 212-832-8646, E-mail: firstname.lastname@example.org.