Hospice care: history, philosophy, and end-of-life services

Long-Term Care - Hospice

Hospice is an approach to end-of-life care and a kind of support facility for terminally ill patients (Wexler & Frey, 2004). It provides palliative care, patient-centered care and related services. Palliative care relieves discomfort without improving the patient's condition or curing his illness. Hospice is extended in a healthcare facility or at home. Its objective is to provide humane and compassionate medical, emotional, and spiritual care for the dying patient (Wexler & Frey).

The term hospice derives from a Latin word, which means the guesthouse of a convent or monastery (Wexler & Frey, 2004). The first hospices were run by members of religious orders in the Middle Ages who cared for them until their death. Hospices were built for ailing pilgrims in shrines in Europe, like in Rome, Compostela and Canterbury. Modern hospices are believed to have started in the United Kingdom in the mid-19th century in Dublin, Ireland. Roman Catholic Sisters of Charity provided a clean and caring place for the terminally ill. The practice became popular in England, Asia, Australia and Africa. It was only in the early 70s that the hospice concept was introduced and accepted in the United States through the efforts of physicians Cicely Saunders and Elisabeth Kobler-Ross. Dr. Saunders developed the basic tenets of hospice philosophy. These tenets include effective pain management, comprehensive home care services, counseling for the patient, acceptance of death as the natural end of the care delivery by health care professionals, bereavement counseling after the patient's death, and continued research and education (Wexler & Frey).

The first hospice programs in North America operated in the 70s in New Haven, Connecticut and in northern California (Wexler & Frey, 2004). Health professionals gradually accepted the concept of death with dignity. Quality care at the end of life soon merged with grief counseling and bereavement care. The government stepped in to contain health-care costs when reimbursement for inpatient hospitalization was substantially reduced. Home-based hospice care also became popular as a more inexpensive alternative to hospitalization or care in a nursing facility (Wexler & Frey).

The hospice concept was not immediately accepted by conventional health professionals (Wexler & Frey, 2004). The concept emphasizes caring more than curing. It also allows interaction with complementary and alternative medicine practitioners. In response to the situation, the Academy of Hospice Physicians was organized in 1988 in order to cultivate interest in hospice care among medical specialists and address their concerns surrounding the practice (Wexler & Frey).

Services, Clients hospice's primary function or service is to enable the patient and his family to accept death as a natural part of the life cycle (Wexler & Frey, 2004). In addition, it provides pain management and psycho-spiritual support and complementary and alternative therapies. Approximately 80% of hospice patients are in the terminal or end-stage of cancer. Traditional medical facilities provide pain medications when requested, a hospice administers these medications regularly and before they are needed. The intention is to prevent pain from recurring. Furthermore, the problem of addiction and other long-term consequences is not a concern in the case of terminal illness. The concern is to provide effective relief to the greatest degree possible (Wexler & Frey).

A second major service of a hospice is to relieve physical, psychological, emotional and spiritual discomfort to the patient's family and others close associates (Wexler & Frey, 2004). It relies on members of the clergy, pastoral counselors, social workers, psychiatrists, massage therapists and other trained volunteers to alleviate the discomfort. A hospice also provides grief and bereavement counseling and support groups to assist family members in expressing or resolving emotional tensions. And it allows the use of complementary and alternative therapies, in addition to conventional medicine, in the control of symptoms and in improving the patient's well-being. A 2002 study conducted on the inclusion of such therapies showed that patients who received them expressed more satisfaction with hospice care than those who did not receive them. These therapies include acupuncture, music therapy, pet therapy, bodywork, massage therapy, aromatherapy, Reiki or energy healing, Native American rites, herbal treatment and similar methods intended to soothe the patient and his family and friends (Wexler & Frey).

A survey was conducted in 2000 on more than 9,000 patients discharged from more than 2,000 hospices on the services they received (Carlson, 2007). It revealed that 22% of them received five major palliative care services, which varied among the hospices. These palliative care services were nursing care, physician care, medication management, psychological care, and caregiver support. Approximately 14% of the hospices provided all five services and 33% provided only one or two services. Only 59% of these patients received medication management services. These included administering medication, dispensing correct dosages, and setting and following dosage schedule.

Growth Projections

The National Hospice and Palliative Care Organization reported that, as of 2003, there were 3,139 hospice programs in operation in the United States, Guam and Puerto Rico (Wexler & Frey, 2004). The Centers for Disease Control and Prevention National Center for Health Statistics said that, in 2000, there were 11,400 combined home health and hospice care agencies, which served 1.5 million patients. It also reported that, at present, more than 90% of hospice care is delivered at home, although based in medical facilities. Hospital-based programs often provide hospice care in a wing or a floor in the building. There are also independent and for-profit hospices exclusively for the care of the terminally ill. Most programs offer both inpatient and home care and allow patients to use one or both types of service (Wexler & Frey).

In 2005, the National Hospice and Palliative Care Organization reported that more than 4,100 hospice programs were operating nationwide (Marshall, 2007). A third of these were for-profit companies. The rise in figures led financial analysts to view the hospice industry as among the strongest growing areas in healthcare. Hospice is cost-effective and more people are getting aware of the concept. Records showed that hospice spending had grown at 26% annually since 1989 as compared with 7% increase in overall health expenses in the same period. Despite this statistical increase, the hospice market has yet to be substantially tapped. Of the approximately 2 million apparent deaths in 2003, only 710,000 were in hospice. But new government regulations in the 80s boosted the growth of hospices. These regulations allowed hospice providers into assisted living centers and nursing facilities. Since their exposure to the patients, the industry became a more attractive enterprise. The hospice concept has grown from a voluntary effort to a highly profitable industry worth $9 billion today. It is predicted to continue growing as baby boomers opt for the "good death." Of the 47 hospices in Colorado, 53% are non-profit and 36% are for-profit. Nationwide, for-profit hospices multiplied four times between 1994 and 2004 at six times the growth of non-profit hospices (Marshall).

Community Assessment

The City of South Bend in Indiana is the seat of St. Joseph County in a region known as "Michiana (Answers.com, 2008)." The region covers counties in Indiana and Michigan. South Bend is famous for the University of Notre Dame and the winning football team, "The Fighting Irish." It has a 107,789 population as of 2000. The City's has nine medical centers, prominently the Hospice of St. Joseph County (McMahon, 2008). Employment in the health care and social services is 13.4% of the total.(McMahon).

The Indiana Hospice & Palliative Care Organization supervises hospice care in the City. Among the issues it confronts are treating the homeless at the end-of-life, the costs of end-of-life care to elderly patients, pain management, care-giving at the end-of-life, and futile care (2007).

Treating the homeless at the end-of-life is a major concern for the City. They can seldom access hospice service for lack of resources for inpatient hospice, a home or social support (Indiana Hospice & Palliative Care Organization, 2007). In addition, these homeless are already beset with substance abuse problems and mental illness. Their need for hospital care is 3-4 times greater than expected and 36% longer than poor patients who have homes and encounter similar health problems. Some organizations offer them medical respite, short-term shelter with basic services for those too sick to function on the street. These organizations cannot, however, care for those who are nearing death. (Indiana Hospice & Palliative Care Organization).

Keeping to a medication regimen is a critical problem among homeless patients. They lack the money to buy them, lose their belongings or suffer from symptoms of mental illness or substance abuse (Indiana Hospice & Palliative Care Organization, 2007). Other problems they confront are the control of pain, the inability to discuss death and dying at home. Because of drug abuse, they may be opioid-tolerant and, thus, may need higher doses. If they stop taking drugs, they need specific treatment to handle withdrawal reactions. The homeless also less willing to discuss death on account of what they have been denied in life. A study found that the homeless expect to die suddenly and violently. This expectation affects their willingness to discuss death. The homeless are also unlikely to have a surrogate or confidant who can make decisions for them in the event of incapacitation. Ethics committees or court-appointed guardians take their place for the function. And dying at home is not an option because they have no home. They are also unlikely to observe house rules in hospices. Experts recommend that homeless patients at the end-of-life be encouraged to form trusting relationships to insure or enhance curative and palliative care at that period (Indiana Hospice & Palliative Care Organization).

City laws are slated for revision to respond to these issues ((Indiana Hospice & Palliative Care Organization, 2007). One will direct the Health Department to name a commission, which will "enact rules for physicians to order for life-sustaining treatment." The other revision will further strengthen healthcare powers of attorney. Living wills merely provide instructions concerning life-sustaining treatment. Powers of attorney concerning the end-of-life wishes of a patient belong to the spouse as first priority, followed by adult children and then close friends ((Indiana Hospice & Palliative Care Organization).