In 1982 Congress added Hospice as a covered service for Medicare beneficiaries, and the Health Care Financing Administration created a unique model through which Hospice services would be provided. It offered interdisciplinary care, a continuum of home and inpatient care, within a program of services to manage the comprehensive needs of those who are dying and their loved ones.

Hospice Care is primarily organized to support persons in their own places of residence, and uses inpatient care to manage episodes of illness or acute distress that cannot be managed in the home or residential location.

Because most care is residence-based, nurses have a unique role in the organizing, delivering, and managing of care. They frequently serve as the "eyes and ears" of the doctors to assess the presenting symptoms and to collaborate with the physicians on their treatment. Unlike home care visiting nurses, their work is not just or primarily to perform skilled procedures, but to serve as the on-site case manager, coordinating all aspects of the care.

Palliative Care

In most of Continental Europe and Canada, the term "palliative care" is used instead of the term "Hospice", and it means the same thing. From the Latin word for cloak, palliative care describe a philosophy and practice whose purpose is to "cloak" or "cover" that which is distressing in order to achieve a satisfactory level of comfort.

Building upon this foundation, palliative care programs and services which were not specifically "Hospice" began to develop In Academic Teaching Hospitals in the United States as palliative care philosophy and practice began to be applied to patient and family care before the end of life. Patients and families need emotional and spiritual support through the whole process of progressive illness, not just at its end, and patients need skilled management of all symptoms, including pain, as well as the skilled treatment of disease.

In contrast to the home and residential location in which most Hospice care is delivered, most palliative care is delivered in acute care settings as part of the total care patients may receive. In this sense Palliative Care is a practice specialty, like pediatric oncology, geriatrics, or infectious disease. Unlike other physician practices it is not disease focused but symptom management focused.

In contrast to Hospice residential care, which is more nurse-managed, palliative care is physician-directed. The physician works with an interdisciplinary team including nurses, social work, chaplaincy, complementary therapists, etc. to address the total needs of patients to support their families.

Quality Indicators of Care

For both Hospice care at the end of life and palliative care through the course of progressive disease management, certain basic principles guide the management of care:

1. Management of Physical and Emotional Symptoms. Pain, fatigue, anxiety, depression, fear, nausea, skin breakdown, shortness of breath, constipation, diarrhea, and other problems can severely limit or destroy quality of life. This must be addressed comprehensively, competently, consistently, and effectively.

2. Support of Function and Autonomy. As disease progresses, patients and families must adjust and adapt to functional change. Nevertheless much can be done to insure personal dignity, maintenance of role and autonomy, and self-respect.

3. Advanced Care Planning. Often carefully thought-out advanced planning can prevent crisis-driven episodes and the sense of loss of control experienced by patients and families. Advance planning is not just a legal event of signing DNR or Surrogate Decision Making Forms, but an ongoing process of education and support in adaptive behavior to progressive illness.

4. Appropriate Goals of Care. It is still common practice for patients to experience unwanted medical care. Great attention must be given to discussing the goals of care with patients and families, as well as the health care professionals, who have difficulty changing goals as disease progresses, and offering choices appropriate to need.

5. Satisfaction of Family and Patient. As persons move towards the end of life and the time of death, everything possible needs to be done to help the patient and family make the best possible use of the limited time available. Insuring the patient's peace of mind and family's perception of their loved one's level of comfort is critical.

6. Global Quality of Life. Despite declining health and function, care that is well-designed and effectively given can enable patients to maintain an overall sense of well-being and meaning in life.

7. Family Burden. How care is delivered to patients and how families are included in the care process affects the degree of serious and emotional distress families experience, or their own sense of well-being and effectiveness. Care must ease the burdens the families experience. Families need support during the time of bereavement.

8. Provider Skill and Continuity. All health care personnel must develop an acceptable level of skill and comfortableness with palliative care and end of life care, as well as inclusion of palliative care specialists and Hospice personnel. There is much misinformation about pain control and much apprehension about dying that must be addressed and changed.

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