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Author: Kathleen Faulkner

Defining Hospice and Palliative Care

It is much more important to know what sort of patient has a disease than what sort of disease a patient has.” William Osler, MD (1949-1919) Canadian Physician and author of Textbook of Medicine
"Palliative and hospice care, like pediatrics, understand that patients should always be seen as capable of growth.” Ira Byock, MD. The Ethics of Loving Care Health Progress, July-August 2004.

Hospice is comprehensive and coordinated palliative care for patients with limited life expectancy, provided both at home and in institutional settings. Hospice care is based on a "biopsychosocial" model rather than a "disease" model of care. The essential philosophy of hospice care is the focus on comfort, dignity, and personal growth at life's end. This encompasses biomedical, psychosocial, and spiritual aspects of the dying experience, emphasizing quality of life and healing or strengthening interpersonal relationships rather than prolonging the dying process at any and all cost. Hospice care also supports the well being of those (usually family members) in caregiving roles and provides bereavement care for survivors, both during the dying process and after the death occurs.

In the United States, palliative care is a related and developing field that has evolved out of the collective hospice experience. Palliative care is a broader application of hospice concepts, applicable to patients with a significant burden of illness, but much earlier in the disease trajectory. Palliative care should be integrated with curative or life-prolonging treatments, while hospice is explicitly non-curative. The intent of palliative care is to prevent and relieve suffering through early identification and careful assessment and treatment of pain and other physical, psychosocial, and spiritual problems. Anticipatory planning is an important component of palliative care. Like hospice, palliative care integrates the psychological and spiritual aspects of patient care. In certain settings, such as hospitals, palliative care services employ a team approach to address the needs of patients and their families. In all healthcare delivery settings, for patients with burdensome or advanced illnesses, palliative care should be provided in one form or another, by the treating physician, a nurse specialist, or a team, depending upon each patient's needs and circumstances. In the United States, most hospice care is provided in the home, but it can be rendered in any environment, including inpatient settings, long-term care facilities (nursing homes, assisted living centers), or anywhere else the patient lives. There are currently over 3000 hospice programs operating within the United States. Most are small programs with a census of less than 30 patients whose budgets are bolstered by charitable giving. Most hospice care is reimbursed under the current Medicare Hospice Benefit (MHB), and most private insurers cover hospice care in their plans as well. In more recent times, there has been an increase in larger multi-site programs to create more efficient operations. This can allow more effective use of limited resources to reach far more patients from all social spheres, with the ability to provide more and more advanced palliative services for symptom control and improving quality of life. The therapeutic intent is a blending of the humanistic patient- and family-centered philosophy that characterizes traditional hospice with the myriad innovations that have been derived through scientific advances of modern medicine. There are several barriers to access of hospice care, including cultural divisions, uncertainty regarding regulations surrounding the MHB, and fears or ignorance about the meaning of hospice. Hospice care, coming at a time of life when emotions are highest, requires a delicate touch, and it is important that clinicians be able to enumerate the advantages clearly. Clinicians can learn to emphasize that, coupled with sophisticated management systems and certain financial benefits, patients who elect modern-day hospice care may have significant improvements in the quality of their end-of-life experience.

History of Hospice

The roots of hospice can be traced to early Christendom, where hospices served as places of respite for weary travelers. Through the Middle Ages, hospices proliferated and expanded their role to provide care for the sick and dying. In 19th century Ireland and France, hospices were established specifically to provide terminal care. The name was first applied to specialized care for dying patients in 1967 by physician Dame Cicely Saunders, who founded the first modern hospice -- St. Christopher's Hospice -- in a residential suburb of London. Saunders subsequently introduced the idea of specialized care for the dying to the United States during a 1963 visit to Yale University. Hospice care in the United States began in the 1970s with small grassroots programs and demonstration projects, followed by rapid proliferation in the 1980s, largely as a result of legislation that created a defined MHB. The last decade has seen continued modernization and rapid expansion of hospice services, concurrent with growing acceptance of palliative medicine, as a credible and much-needed specialty and domain of the healthcare continuum to improve advanced illness outcomes and end-of-life care. During this time, hospice has broadened its scope from a service almost entirely dedicated to cancer patients to a service dedicated to the care of all patients with life-limiting illnesses such as end-stage cardiac or pulmonary disease, advanced dementia, and other diseases.

What Should You Expect From a Quality Hospice Program?

A quality hospice program provides an interdisciplinary team of experts that deals with all aspects of the dying process -- physical, social, practical, spiritual, and interpersonal. This team is usually mobile and works with the patient and the primary caregivers (if they have them) wherever the patient lives. It is important to note that in hospice, there are no arbitrary limitations to admission based on the patient's circumstances other than having a life expectancy of < 6 months if the disease runs its expected course.

Care Settings

Hospice is not a place but an applied approach to care, provided in the patient's home, nursing homes, and other facilities. A 2004 compilation by the National Hospice and Palliative Care Organization found that about 58% of patients who died under hospice care died at home, and about 22% died in a nursing facility. The remaining 20% of the patients were in hospitals, hospice-operated inpatient facilities, free-standing hospice units, and residential care settings. All hospices must provide an inpatient level of care. Hospice programs may have their own inpatient facilities or arrangements with freestanding hospice houses, hospitals, or residential centers to care for patients who have higher acuity care needs. Some hospice providers also have residential centers for patients whose social circumstances preclude care in a private residence. A significant proportion of Americans spend their last months to years in long-term care facilities. There can be some tensions between the philosophies, capabilities, and imperatives of the nursing home staff and the goals of care enumerated by the hospice staff in concert with the patient's (or proxy's) wishes. There are ongoing efforts to reconcile seemingly contradictory regulations and to facilitate improved communications and coordination among all parties involved in caring for this rapidly growing, and highly vulnerable, segment of our population.

Interdisciplinary Team

Modern hospice care requires professionals with expertise in pain and symptom management as well as knowledge of the intra- and interpersonal dynamics at this unique time in the human life cycle. It is a team effort, with a typical interdisciplinary team consisting of medical providers (physician, nurse, nursing assistant), psychosocial care providers (social worker), spiritual care providers (chaplain), and other supportive care professionals as needed (nutritionist, physical therapist, pharmacist, speech therapist, etc.).

Comprehensive Services

Besides professional support, hospice provides support for material needs such as medications for managing symptoms related to the terminal illness, durable medical equipment, and medical supplies. Current hospice care also involves volunteers who provide visitation, companionship, housekeeping help, assistance with errands, and other support. Volunteer involvement is integral to the hospice concept and is a requirement under the provisions of the MHB.

Who Pays for Hospice Services?

Medicare, private health insurance, and Medicaid (in 45 states) cover hospice care for patients who meet the eligibility criteria. Many hospices also rely on community support for donations. While each hospice has its own policies about payment, traditionally hospice care has been offered based on need rather than the ability to pay.

Medicare Hospice Benefit

More than 90% of hospices in the United States are certified by Medicare. Medicare beneficiaries who choose hospice care receive a full range of palliative medical and support services for their terminal illness. The MHB, initiated in 1983, is covered under Medicare Part A (hospital insurance) and is available to over 80% of people who are eligible for hospice. Unfortunately, the MHB and the important services it covers are underused. Clinicians should be aware of the hospice benefit criteria and covered services in order to help their patients obtain quality end-of-life care (Table 1).

Table 1. The Medicare Hospice Benefit (MHB)
  • Eligible for Part A of Medicare
  • Terminally ill with a life expectancy of 6 months or less
  • Physician services
  • Medical care through the hospice Medical Director
  • Nursing care
  • Case management
  • Medical appliances and supplies
  • Medications related to the terminal illness and palliation of symptoms
  • Speech therapy
  • Short-term inpatient and respite care
  • Physical and occupational therapy
  • Dietary counseling
  • Homemaker and home health aide services
  • Continuous care
  • Counseling and social work service
  • Spiritual care
  • Volunteer participation
  • Bereavement services
  • Two 90-day certification periods
  • An unlimited number of subsequent 60-day periods

For the first 90-day certification period, hospice certification must be obtained from both the beneficiary's attending physician and the hospice medical director or the physician member of the hospice interdisciplinary group. After that, other 60-day periods require certification by only 1 physician.

Excerpted from “Core Curriculum and Review Syllabus” American Academy of Hospice and Palliative Medicine.

“The good physician treats the disease, the great physician treats the patient who has the disease.” William Osler, MD (1849-1919) Textbook of Medicine