“They want to be free of pain, though not to the extent where medication will interfere with their awareness. They want continued companionship of family and friends s and continued support. They want the familiar things they enjoyed while well: children, favorite foods, flowers, music and even their pets. Most of all, they want to be accepted as they are, to maintain their own individuality, and to be assured that they will be cared for and be remembered with love and respect.” William J. Worden, M.D., Harvard Medical School

Hospice: What Is It?
The term “hospice” is a very old one, dating back to the Middle Ages and the time of pilgrimages to holy places. In those days, a hospice was a “way station,” a place where a religious order provided special care to pilgrims who were sick or dying in their journey. The word “hospice” is the root for “hospitality” and “hospital.”

In the mid 1960’s, hospice as we know it today, took on a new meaning that has changed and improved the care of today’s pilgrims, the terminally ill. What has become known as the “hospice movement,” began in England and was first seen in this country in the mid 1970’s. Today, there are over 1400 hospice programs providing care across the country.

Hospice Care
Hospice is a “concept of care,” rather than a place. Its main purpose is to provide the patient/family with the highest quality of life available to the dying. No matter where hospice care is provided, there are certain characteristics that distinguish it from conventional medical care. At the same time, there are a number of elements of hospice care that are identical with conventional medical care.

Hospice Care vs. Conventional Care

Hospice Care

Conventional Care
Program under medical direction
Care delivered by an inter-disciplinary team
Occasional “team” care
Focus on relief of symptoms
Focus on cure/rehabilitation
Emphasis on institutional care
Emphasis on institutional care
Patient/family is the unit of care
Patient is the unit of care
Services available 24 hours, seven days a week, 365 days a year
Limited services in home, with full institutional care
Bereavement support for survivors, pre- and post-death
Usually no bereavement support
Integrated and coordinated attention to spiritual, social, psychological needs of patient/family
Usually limited attention to spiritual, social, psychological needs of patient/family

Types of Programs
Most programs will fall under one of three categories:

  • home care (sometimes affiliated with a home health care service)
  • hospital or nursing home based
  • free standing or independent

The home care type of program is one which may operate from an office, but actual care is performed in the patient’s home by hospice-trained caregivers. Most hospice programs in this country are the home care type. Caregivers are available 24 hours a day. Services home care hospices may not be able to provide are usually sub-contracted to home health agencies. In most instances insurance or other third party reimbursement covers costs of care in part or whole. This is usually the least expensive form of care.

Hospital or nursing home based hospice care is provided at the patient’s home, in a hospital or nursing home by trained hospice caregivers assisted by regular staff. Facilities, services, staff and expenses are shared but not necessarily duplicated. An area of a health care facility may be set aside and designated for “hospice.” Restrictions pertaining to visitors and hours are usually less rigid to permit a more home-like atmosphere.

A free standing or independent hospice combines all the advantages of the above two or more, but unfortunately this form of care has proven to be more costly, and therefore, less feasible. This program provides all its care and services from a totally separate building and is usually not associated with a hospital. All staff are assigned only two or three hospice patients. The facilities are much more home-like than found in a hospital setting. A kitchen is often provided so that family members may prepare home cooked meals any hour of the day or night. Family members are encouraged to be present around the clock and additional beds are provided for that purpose. Friends, grandchildren and even pets may be welcome. However, basic to the hospice concept, the patient is still encouraged to remain at home as long as possible.

Cost Of Hospice Care
Cost of hospice care will range from very little to the same as traditional hospital care and occasionally more, depending on the type of program, services required and medical needs. Many organizations utilize all volunteer lay professionals and persons, charging nothing for their care or services. On the other hand, a program which has a full-time paid staff and a facility to maintain may charge comparable hospitalization fees.

Most health insurance companies now pay for hospice care regardless of where it is provided, and many patients may be eligible for Medicare benefits. Most major employers provide hospice medical coverage. Of 1400 major employers surveyed, two-thirds offered hospice care as part of their medical/health package benefit.

Hospice And The Funeral
Hospice care, in its broadest sense, includes care of the patient and family prior to the time of death, at the time of death of the patient, and care of the family during the period of bereavement. Because hospice care includes attention to the many areas of need that can be present during this time of stress, it is common for hospice staff to discuss the need for spiritual support and to inquire into the patient and family interests regarding funeral services.

There is no standard hospice approach toward religion or religious beliefs. Yet a chaplain is often a member of the hospice interdisciplinary team, and hospice programs recognize the value of religious beliefs and practices for the families they serve. Some persons may not desire spiritual support or religious services. This is recognized and respected.

There is no standard hospice approach toward the funeral or funeral practices because of varying attitudes toward immediate post-death activities. Yet most hospice programs recognize the value of funerals and have established communication and working relationships with local funeral directors. The National Hospice Organization and its standards document recognizes the significant role of the funeral director in collaborating with the hospice team at the time of death.

Through direct contact with funeral service, pre-arranged and pre-planned funerals of hospice patients have increased. In addition, arrangements have been made less emotionally stressful and more meaningful for families. Hospice care, by itself, does not exert any marked changes of interest in funeral customs among bereaved persons. But, at the same time, hundreds of hospice programs in all areas of the country work with families who will be faced with the question of what to do about the funeral and disposition of the person of whom they loved and helped care. Through hospice care, they have time and support in which to consider their options for a funeral or an alternative and the involvement of family and friends in whatever is decided upon.

Many family members who will plan these post-death activities will have been involved in providing physical care during the last days of life of the deceased. This is a return to a role that was once common for family members. Yet so many other elements have changed in our society, culture and economics that it is impossible to offer firm speculation about trends that may become apparent in the years to follow.

Hospice Care And The Funeral Director
Funeral directors have become an integral part of hospice care. Many directors have provided leadership in bringing hospice care to their communities. When you consider the philosophy of hospice and funeral service, it is clear why funeral service is a “natural extension” of hospice care.

With funeral planning and more open discussion of at-death needs encouraged by hospice, funeral directors and hospice caregivers are working closely in order to meet the total needs of families.

With a greater understanding of each other’s care and areas of expertise and resources, each discipline may work together to plan a course which makes for a more natural transition of care at the time of death and in caring for the survivors in the following months. In other words, at no time will family members be without support. These strong attachments and feelings made from one supportive environment are shared and transferred to another as they move through the process of dying, death and bereavement.

Hospice workers and funeral directors possess experience and professional information that converge on a common meeting ground providing services to families at the time of death. Other disciplines, especially the clergy, are also directly involved. For effective interaction to take place, there must be a sharing of information, a willingness to dialogue and an establishment of effective means to communicate and facilitate necessary change to lay the foundation for a sense of mutual trust and respect.

Hospice workers are familiar with problems inherent in establishing effective working relationships among different professional disciplines. However, hospice care requires that such relationships be developed and maintained. Likewise fledgling hospice programs have learned that they must develop open dialogue with clergy, funeral directors, the local medical community and with medical examiners and coroners. To facilitate this sort of interdisciplinary sharing and cooperation, it has been found helpful to:

  • Communicate with local funeral directors and all other care providers.
  • Ask funeral directors to develop “inservice” training sessions for hospice workers on a variety of subjects including funeral customs, functions of the funeral, a visit to a funeral home and an opportunity for discussion regarding feelings and misunderstanding about funerals.
  • Develop workshops involving hospice, clergy, funeral directors and medical staff to seek ways of sharing information and improving service to families at the time of death.
  • Share resources on funerals and hospice practices.
  • Develop dialogue between the clergy, funeral directors, hospice workers and organizations at the local, regional and national levels.

Most programs include a funeral home tour as part of required initial hospice training. This is an excellent opportunity for dialogue and explaining the value of the funeral, services of the funeral director and related needs of the family. This is but one way a funeral director may participate in hospice. Other directors participate in more active roles such as serving on a hospice board, as an advisor, by offering educational programs dealing with dying, death and bereavement of in other capacities.

Most directors have elected to leave the “hands on” care to the nurses and lay volunteers or may just not have the time to become personally involved. Here, the funeral director may volunteer office staff to do telephone work, type or make photocopies, provide space for meetings or access to their resource library, videos and informational brochures—available from the Funeral Service Educational Foundation. Simply sponsoring programs or providing some financial assistance is always appropriate and appreciated. The funeral director can also be a liaison for hospice with the medical examiner or physician to assure a smooth transition at death. Communicating and advance planning can help prevent insensitive investigators entering the home and upsetting the tranquil environment creating by hospice and causing unnecessary delays.

Some Special Considerations
As with all activities in which funeral directors engage, hospice activity requires a commitment of belief and time. Though the concept of hospice is an old one, its implementation demands a dedication that conveys its importance to the public. No funeral director should become involved unless willing to work diligently to further the aims and goals of a hospice in the community.

In communities where there is more than one funeral home, it is desirable that representatives of all of them become supportive and active in a hospice. However, reluctance or inability to participate by all of the funeral homes should in no way preclude individual funeral directors from participating.

In addition, if there is more than one hospice in the area, funeral directors should be supportive of them all. This would eliminate conflict of interest issues.

In Conclusion
Hospice is a vital and valuable concept worthy of establishment in any community dedicated to support the concept. Hospice and funeral service have high principles and standards of care. Both serve the family, providing care and concern for dying patients and supporting the family in their bereavement, thus hospice and funeral service should be mutually supportive of each other.

Robert C. Slater, author and educator, has written, “Funeral service should be an integral part of hospice to extend the very hospice concept for the dying to the caring concept of the bereaved. The funeral director who is privileged to serve such families will find that to them, death has become a part of life, and as such, deserves loving and caring actions both on the part of the family and the funeral director who serves them.”

The National Hospice Organization encourages funeral directors to become actively involved in hospice.

For information on hospice, please contact the National Hospice Organization, 1901 North Moore Street, Suite 901, Arlington, VA 22209, 703-243-5900 or call the “National Hospice Help Line,” 800-658-8898.

This information is made available through the cooperative efforts of the National Funeral Directors Association and the National Hospice Organization.

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