The Hospice System in the USA

Hospice in the USA

The hospice concept

Hospice is a term given to specialized care that's intended to provide comfort and support to patients and their families when illness no longer responds to treatment, and death is inevitable. Hospice care doesn't prolong life or hasten death.

The goal of hospice care is to improve the quality of the patient's last days, offering as much dignity and comfort as possible. In other words, a "gentle end". Hospice staff and volunteers have specialized training in all aspects of nursing care, including optimal pain management.

The emotional, social, and spiritual aspects of the patient's disease and their relevance for family and friends are dealt with. Bereavement counseling before and after the patient's death is also included.

The history of hospice

They word hospice comes from the Latin "hospitium", which means "guesthouse". Originally, it was meant to describe a place of shelter for weary, sick travelers returning from religious pilgrimages. Dr. Cicely Saunders started the modern hospice movement in the 1960s, when she established St. Christopher's Hospice in London. Her team approach to caregiving was one of the first to use modern pain management techniques, and rapidly became popular. Hospice movements have been set up in many countries, using different patterns, but the underlying principles are the same.

The first hospice in the United States was in New Haven, Connecticut, which was set up in 1974. It must be emphasized that, at least in the USA, hospice is not a place, but an organization of care that's provided in the home or in a nursing home. A few areas in the USA have in-patient units for hospice care.

How does hospice care function?

Patients can be referred to hospice when their life expectancy is less than six months. After referral, hospice staff and the hospice physician meet with the patient's personal physician to discuss medical history, current symptoms and life expectancy. They then meet with the patient and family to discuss the hospice philosophy and available services.

Pain and comfort levels are discussed frankly, as well as financial matters, medications and special equipment requirements (e.g. hospital-style bed, commode). A "plan of care" is developed, which is reviewed and revised regularly, depending on the patient's condition. Counseling before death is provided to the loved ones, and in most instances is available for a further year after the patient's death.

Financial aspects

Medicare covers hospice for patients with a prognosis of less than six months. This benefit covers all services, medications and equipment related to the illness. Specifically, it includes physician and nursing services, home health aides, medical appliances and supplies, spiritual, dietary and other counseling, continuous care during crises, and bereavement services. Trained volunteers assist in providing many of these services. Patients who have an intervening medical condition unrelated to their terminal disease can receive regular Medicare coverage as well.

Medicaid covers hospice care in nearly all states in the U.S.A. Private health insurance policies and HMOs include hospice coverage and benefits.

Why you might want to consider hospice

In a 1992 poll 9 out of 10 Americans stated they would prefer to be cared for and die in their own home or a family member's home. When offered the choice of using "a comprehensive program of care" at home, 60% said they would be "very interested", and a further 26% said they would be "somewhat interested". At the same time, however, 22% of those who had said they were "very interested" didn't choose "hospice" when offered it by name. This shows there's confusion or unfamiliarity with the term hospice.

Here are 10 common questions, and their answers:

Some people believe hospice is where you go when there is "nothing else to be done". However, there really is more to be done for patients and family, even when an illness cannot be cured. Optimal pain management and comfort is another important form of treatment that is appropriate for terminal care. Hospice programs rely heavily on volunteers to give family caregivers a break by shopping, picking up prescriptions and providing companionship.
Some fear that families are separated from a dying patient during hospice care. Nothing is further from the truth. If family members (including children) experience the dying process in a caring environment, it helps them handle their own natural fear of death and the death of a loved one.
Just how expensive is hospice? Usually it is less expensive than conventional care during the last six months of life. High-cost technology is used less often than in a hospital family, friends and hospice volunteers working in the home largely provide setting, and day-to-day patient care.
Some people worry that they cannot keep their own doctor if they enroll in the hospice care system. In fact, hospice physicians work closely with the patient's own doctor of choice in determining the plan of care and reviewing it at regular intervals.
Are hospices inspected and certified? There is no national accreditation program, although many hospices seek certification from JCAHO (Joint Commission on Accreditation of Healthcare Organizations) or CHAP (Community Health Accreditation Program). Hospices that provide Medicare-covered services are certified by HCFA (Health Care Financing Administration).
Can a hospice patient who shows signs of recovery be returned to regular treatment? If the patient's condition improves and the disease seems to be in remission, patients can be discharged from hospice and return to aggressive therapy or go on about their daily life.
What if the patient is still terminally ill, but the 6-month period is up? Medicare payment is based on a 6-month life expectancy, and many insurance companies use similar same rules. In such cases, the hospice physician must certify that the patient is still terminally ill, and then Medicare coverage can be renewed for 60-day periods.
How does hospice manage pain? Hospice believes that emotional and spiritual pain is just as real and in need of attention as physical pain, and it addresses each. Hospice nurses and doctors are up-to-date on the latest medications and devices for pain and symptom relief. In addition, physical and occupational therapists assist patients to be as mobile and self-sufficient as possible, and they are often joined by specialists schooled in music therapy, art therapy, massage and diet counseling. Family members are instructed in simple nursing procedures to help alleviate pain (application of medicated patches, for example).
How successful is hospice in pain management? The answer is "very". Using some combination of medications, counseling and therapies, most patients can be kept pain free and comfortable.
What role do religious organizations play? Hospice is not an offshoot of any religion. While some churches and religions have started hospices (sometimes in connection with their hospitals), these hospices serve a broad community and do not require patients to adhere to any particular type of beliefs.

Robert W Griffith
May 18, 2001