What Is Palliative Care?

Palliative care is active total care offered to patients with progressive and advanced disease when the prognosis for survival is limited. Palliative care intends neither to hasten nor postpone death. Its purpose is to relieve suffering and help the patient and family achieve the best possible quality of life. Palliative care is best delivered by an interdisciplinary team which can provide integrated attention to physical, psychological, social, spiritual, and practical problems. Palliative care offers a support system to help relatives and friends cope during the patient's illness and bereavement.

Does a person have to be dying to receive palliative care?
Palliative care is intended for people who are terminally ill, seriously ill, or chronically ill with life-limiting conditions that cannot be "cured" by surgery or therapies. However, efforts to prolong life or to comfort are not necessarily mutually exclusive. Many patients who receive palliative care feel better and live longer than expected.

The dichotomy between "cure" and "care" is fostered by eligibility rules for hospice benefits established by the federal government and private insurers to limit expenditures for palliative care. Restricting palliative care to those who are expected to live no longer than six months creates unnecessary misery for many patients. It also unduly burdens clinicians who, in many cases, cannot accurately predict whether a seriously ill patient will live three months, six months, a year, two years, or even longer. A strict dichotomy of cure vs. care also dissuades suffering patients from requesting palliative care.

Early palliative care for patients with chronic, critical, or multiple illnesses lessens the need for crisis-oriented services. Early palliative care provides a framework for anticipating and planning for the difficulties inherent in the treatment and care of such individuals. In some cases, particularly those of children with serious diseases, early palliative care can prepare the patient for life-prolonging treatments such as chemotherapy and make the treatments more tolerable.

Is palliative care the same as hospice?
The terms "hospice" and "hospice care" often are used interchangeably with "palliative care" when they refer to a philosophy of caring for the dying. However, palliative care, or palliative medicine, is a more precise term for those clinical activities that relieve suffering. Hospice usually refers to a program or organization that provides palliative care at a patient's home or at some other site. Hospice can also refer to an actual facility where care is provided.

What are the components of palliative care?
Many people use the term "palliative care" to refer to any treatment for pain. The practice of palliative care, however, is much more comprehensive and requires a high level of knowledge and skill. As the Institute of Medicine points out in its extensive report on end-of-life care: "Helping people live well while dying requires sophisticated strategies and tools for measuring and monitoring symptoms, functional status, emotional well-being, and burdens associated with terminal illness and treatment." *
Rather than viewing the patient as a series of isolated symptoms, comprehensive palliative care offers an integrated approach to the physical, psychological, spiritual, and practical needs of patients and those close to them.
Physical: When people are seriously ill, they often experience uncomfortable and debilitating physical symptoms stemming from their illness and perhaps from medical treatment. Providing relief from pain is one of the highest priorities of palliative care. Another is easing debilitating physical symptoms which may include nausea, fatigue, lack of appetite, shortness of breath, difficulty swallowing, constipation or diarrhea, mouth problems such as dryness, bleeding or infection, bloating, and skin problems such as itching, sensitivity to touch and bed sores. Fortunately knowledgeable nurses and physicians can anticipate, sometimes prevent, and relieve many physical symptoms. Today there are a number of tools to help clinicians ascertain the type, intensity and duration of a patient's pain. To be effective, the prescribing clinician must know how to match the correct drug, dose, and method of delivery (for example, oral, rectal, subcutaneous, pump administration) with the specific problem. Treatment for intractable pain is likely to include administration of an opioid analgesic, or narcotic, such as morphine. But clinicians and other caregivers might also employ behavioral therapies. One of the reasons palliative care is regarded as a medical specialty or subspecialty in some countries is that research in effective pain management is an active and ongoing enterprise.
Psycho-social: This area of care refers to both cognitive functioning and emotional well being. Seriously ill patients and those who are approaching death often feel sad or anxious. Mental health specialists make a distinction between sadness and the overwhelming despair of severe depression which saps the psychic and physical energy a person needs for coping with illness. Depression, which in some cases may be caused by a chemical imbalance from medications or disease, can interfere with appetite, sleeping, personal hygiene, and communicating with family, friends, and caregivers. Anxiety may also interfere with the ability to eat and sleep and may provoke shortness of breath, nausea, diarrhea, or rapid heart beat. Severe anxiety or panic might stem from specific fears about dying or from drug treatment or drug withdrawal. Dementia is a common cognitive complication afflicting the older elderly, younger patients with such diseases as AIDS and stroke, and those suffering from Alzheimer's disease. A person with mild dementia might be apathetic and have difficulty concentrating. More severe dementia may leave a patient unable to speak or move about. Palliative care requires expertise in identifying emotional and cognitive symptoms which can easily be misinterpreted, and responding to them. Several approaches including medications, psychotherapy, and empathetic listening can be helpful. Research suggests that most people face their illnesses with hopefulness, holding on to whatever time they have even though they may have transient wishes to just die and get it over with. Untreated depression is now believed to be even more significant than pain in prompting approximately 10% of terminally ill patients to contemplate suicide or express a wish for help in hastening death. Often those wishes reverse when patients receive symptom relief and emotional support.
Spiritual: Human beings need to give meaning to life and find peace in death. Dying people frequently try to grasp the significance of their lives. Family members, friends, and caregivers around them also find themselves confronting questions and anxieties about their own mortality. This is why spiritual careÑpastoral or non-religiousÑis helpful to many patients and families. With support, patients may find hope, comfort, reconciliation, love, and personal growth at the end of life. This support extends beyond the patient to the family because people do not experience death as isolated individuals but as participants in a web of relationships. Palliative care continues to support family members in their bereavement and is sensitive to the importance of religious rituals and cultural practices regarding death and dying.
Practical: Seriously ill patients and their families have many decisions and arrangements to make. Many juggle a host of time-consuming home care tasks such as shopping and preparing food, arranging transportation, obtaining medications and equipment, providing hygienic care, managing visitors, and negotiating work schedules. Practical considerations clearly influence physical, psychological, and spiritual well being. Some of those patients who consider suicide do so because they are afraid of burdening their families and depleting family resources.

When a family, for financial or other reasons, is unable to provide or arrange for sufficient care, the patient and the family members are more vulnerable to physical, psychological and spiritual illness and malaise. This is why practical arrangements are a focal point of palliative care.

Who provides palliative care?
Since palliative care is so comprehensive, a team with a broad spectrum of expertise consults on care arrangements or provides direct care. To address the four dimensions of care-physical, psycho-social, spiritual, and practical-this team is likely to include a physician, nurse, pharmacist, social worker, and chaplain. Team members, and those called upon to assist the team, may be specialists in any number of fields, including oncology, geriatrics, neurology, pharmacology, psychiatry and psychology. Trained volunteers from the community and religious groups may provide significant support. Palliative care teams can provide services in any setting-acute care hospitals, nursing homes, residential hospices, or patients' homes.
Although seriously ill patients and their families initially require substantial time to discuss their situation and arrange for services, early palliative care often prevents problems that would require more intensive treatment and care and makes efficient use of health care resources.

Is palliative care something new?
In the United States palliative care is just emerging as a defined area of expertise, education, and research. It is far more readily available in Canada, the United Kingdom, Australia, and New Zealand than in the United States. The U.K., Australia, and New Zealand recognize palliative care as a medical specialty.

Palliative care clinicians and researchers throughout the world are advancing the field by conducting studies, devising clinical models, and developing educational curricula. They are helping the public to understand that intensive but futile medical interventions, or clinician abandonment, are not the only options for the dying.

* Field, Marilyn J., and Christine K. Cassel, ed. Approaching Death: Improving Care at the End of Life. Washington, D.C.: National Academy Press, 1997.

Economic Barriers to Palliative Care >