Hospice care is a specialized, coordinated professional health service designed to support people confronting life-limiting illnesses and their families. While hospice programs serve a clientele of people who may be expected to die from their disease in coming months, the focus of hospice care is on living – not on dying – through the promotion of comfort, symptom relief, the search for meaning, satisfying farewells and closure, and opportunities for living each day that remains as fully as possible.
Hospice provides pain and symptom management and attention to all of the physical, emotional, psychological, social, practical and spiritual challenges of living with a terminal illness, with the aim of maximizing quality of life at a point when treatments aimed at extending life offer diminishing returns. Hospice care is provided by interdisciplinary teams comprised of nurses, social workers, physicians, personal care aides, volunteers and other skilled professionals. These professionals serve both the patient and the family who are facing serious illness, possible end of life and grief.
Most people do not pay for hospice care. The costs of hospice care are covered by Medicare, Medicaid and most private insurance plans. Medicare and state hospice licensing laws define the rules and regulations hospice programs must meet, including patient eligibility criteria in order to qualify for Medicare or Medicaid payments for their services. But these rules allow considerable flexibility in developing care plans and allocating services based on whatever is needed most by each patient. Hospice continues to support family survivors with bereavement services for a year after their loved one’s death.
Hospice is also described as a philosophy of care, one accepting of dying as a stage of living and of death as a natural and inevitable outcome of aging and illness. Most of the time, hospice care is offered in the patient’s own home, because that is where most people would prefer to be in the final phase of life – if they had adequate support. There are also hospice inpatient units for when living at home is not possible, and in many cases patients residing in nursing homes or assisted living facilities can receive hospice care while remaining in those settings. Today, according to the National Hospice and Palliative Care Organization, approximately 4,000 U.S. hospice programs provide care to about 1.4 million Americans each year. Thus, what started as a grassroots, consumer-driven movement has grown into a $10 billion health care industry, with both positive and negative implications for its users.
Although people sometimes shy away from a hospice referral when it is first proposed by their physician, because of its inevitable association with terminal prognosis and the end of life, in fact hospice care can be a lifeline and source of hope and peace for families in crisis. More often, families will say: Why didn’t we know about hospice sooner? Myths and misunderstandings are widespread about this incredibly valuable service.
Hospice care is also associated with palliative care, although the latter generally does not focus on a terminal prognosis as a criterion for eligibility for its supportive services focused on symptom management, quality of life and clarifying options for care.