BY: RHODA WEISS
Ms. Weiss is a Santa Monica, CA–based health care consultant and speaker.
Each year, one out of every two Americans experiences the death of a close
friend or relative.
Because this is so, Sr. Francine Gries, OSF, executive director, St. Francis
Hospice, Honolulu, HI, understands that death and dying are sensitive issues
for many people. A 1996 Gallup poll done for the National Hospice Organization
found that the greatest fear associated with the end of life is "being
a burden to family and friends."
"Because many do not wish to discuss death issues, especially when death
is not imminent, people tend to be unfamiliar with hospice," Sr. Francine
says. "One of hospice care's many roles is to help people come to
terms with mortality and to consider how they would like to be treated at life's
end."
The nation's 3,000 hospice programs, 25,000 hospice professionals, and
more than 100,000 hospice volunteers are committed to helping the terminally
ill live their final days with dignity, fearing neither pain nor being alone,
in the warmth and comfort of an environment they have themselves chosen, and
surrounded by family and friends.
"We accept death as a natural part of life and seek neither to hasten
nor prolong the dying process," says Sr. Francine. St. Francis Hospice's
census is typically around 120 people, including some three dozen patients who
live either in a converted mansion or a newer, specially constructed hospice
facility (both on the island of Oahu); the remainder receive care in their homes
or in hospitals or long-term care centers. Over the past 25 years, St. Francis
has served 25,000 terminally ill patients, providing them with a continuum of
care for medical, emotional, social, and spiritual needs. For friends and family
members the hospice offers bereavement counseling, support groups, and memorial
services.
Families that take advantage of hospice services typically rate them more highly
than they do medical, hospital, or other health related services. To increase
awareness of their services, many hospice organizations are beginning to implement
communication techniques.
Health Professionals
End-of-life care and hospice principles are increasingly being taught in
medical schools, seminaries, social work departments, and training in case management,
dietary practices, and related disciplines. Some such courses are taught by
school faculty, whereas others are taught by hospice professionals. Some hospice
organizations offer internships or clinical rotations.
Because hospice organizations know that most referrals come from health care
professionals, they increasingly promote their services in hospitals and health
care facilities, by means of newsletter articles, continuing education programs,
employee orientation presentations, and lectures to volunteers, and through
enlisting the participation of health care workers in hospice visits.
Hospice organizations often encourage their medical directors and physician
"champions" to institute dialogues with other doctors concerning the
importance of timely hospice referrals. These physician-advocates also write
articles for professional journals and newsletters emphasizing hospice's
expertise in pain and symptom management and the overall value of palliative
care. Hospice organizations also share with physicians and other caregivers
of terminally ill patients the letters they receive from family members who
have had hospice experience.
Hospice physicians also share their expertise through participation in cancer
treatment planning conferences (sometimes called "tumor boards"),
in which cancer specialists review each other's cases. (About two-thirds
of hospice patients have cancer.) These conferences focus on treatment; still,
it is helpful for specialists to be able to explain end-of-life care to patients
who will need it.
Hospice organizations also try to educate employees in doctors' offices
about hospice care and ways to make referrals to it. This makes sense because
patients and their families often place a good deal of trust in such people.
(These physicians may also allow hospices to place literature in their offices.)
Volunteers
The primary task of hospice volunteers is to assist its staff and its patients
and their family members. But they can play other roles as well, such as promoting
the hospice concept among community groups, religious organizations, and in
their regular places of employment.
Volunteers can also raise funds for the hospice. In addition, they might ask
florists and greenhouse owners to contribute flowers and plants to brighten
the environments of hospice patients.
Employers
Employers often report difficulties in dealing with employees whose loved
ones are dying. Hospice organizations can offer workplace programs on death,
dying, and grieving to businesses and unions. In addition, they can provide
articles to company newsletters concerning end-of-life care, the Medicare hospice
benefit, caring for a loved one, and related issues.
Community
To increase understanding of death and dying (and lessen fear of it), some
hospice organizations make presentations to schools, community organizations,
long-term care facilities, senior citizen programs, and religious groups. Speakers
are sometimes accompanied by surviving friends or family members who provide
testimonials to hospice care.
Some hospice organizations have worked with local restaurant owners and florists
to provide patients with special, flower-bedecked candlelight dinners served
by volunteers. Others have encouraged local libraries (including online libraries)
and video stores to stock materials on hospice and end-of-life care. Still others
have organized patient/family art exhibits, Christmas tree-lighting ceremonies
using ornaments in honor of deceased loved ones, and the sewing of hospice quilts.
Media
Hospice organizations should consider using public media to increase awareness
of end-of-life care. This can be done through writing newspaper, newsletter,
and electronic articles; newspaper editorials; letters to the editor; participation
in public affairs meetings and radio talk shows; and by calling in to talk shows.
Spreading Knowledge
As Sr. Francine notes, "While hospices around the world care for millions
of people each year, they could provide care for many, many more if physicians,
other health professionals, and the community were more knowledgeable about
the difference we make in dying people's lives. Hospice reminds us that
how our days end is as important as how our days are lived."
For more information on St.
Francis Hospice access their website. Rhoda
Weiss, recipient of a Kellogg Foundation fellowship to study hospice, can
be reached at 310-393-5183.
Copyright © 2004 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.