MAY 6, 1994 GAY PEOPLE'S CHRONICLE
The hospice is an idea
as old as home itself
by Charlton Harper
For people living through a terminal illness, there are alternatives to Dr. Jack Kevorkian that you won't read about in the tabloids or see on Court TV, alternatives that lack the media-grabbing drama of doctorassisted suicide. Alternatives that bring dignity to dying.
But don't use the A-word around David Simpson. He's the executive director of the Hospice of the Western Reserve (HWR). Simpson prefers an alternative to "alternative." "It's not alternative, so much as appropriate. What is appropriate for the individual," he says.
The concept of hospice is an old established idea that's just now getting play in the U.S.A hospice provides compassionate, comfort-oriented care to people who are in the final stages of terminal illness and are through with aggressive medical intervention. They are looking for relief from pain with as much normalcy as possible to their dying.
The hospice approach is a team effort involving nurses, nursing assistants, social workers, bereavement and spiritual care coordinators, music therapists, home care volunteers, family caregivers, physicians, lawyers and clergy. All are focused on easing the many issues that surround terminal illness, whether spiritual, emotional, legal, financial or physical. Simpson refers to it as pain management on a broad approach.
Hospice of the Western Reserve services are available to anyone with a terminal illness and are provided regardless of ability to pay. A patient undergoes an initial assessment by a hospice worker and a plan is devised that addresses need. Patients receive unlimited visits from hospice nurses, social workers, and therapists. Medical treatments like radiation, pharmacologicals and biologicals are offered as palliative care. Services are covered through medical insurance, Medicaid/Medicare and private donations. Most insurance plans allow a patient to switch back and forth between hospice care and standard care.
Because the hospice approach treats the symptoms of disease and focuses on easing pain, it is a cost-effective alternative to surgery and continued medical treatment. But Simpson warns it's an approach that's not for everyone. "Hospice is not about intervention," he says. "It's not for people who want to go on with curative treatments. We're doing things that might have been provided by the family in the home, say, in the 19th century. But we are cutting-edge because hospice is where so many medical issues are heading."
Where medical issues are heading can be seen in the emphasis HWR places on dialog between patient, caregiver and provider. Simpson says "it's all about self-determination. We give information to the patient and enact a dialog as to what they want and where they are with their health." That self-determination coupled to the benefits of homecare
makes hospice an attractive part of future health care reform. Hospices are growing by 20-30 percent a year, and with over 250,000 people receiving hospice care last year, it's a billion dollar business.
But don't talk dollars with Simpson. He prefers the human side. "Hospice isn't good because it's cheap, but because it's appropriate. It's not a set plan based on diagnosis, but on individual needs. And by the way, it's less expensive," he adds, knowing what an important afterthought that really is.
Since the late 1980s, more than 30 percent of HWR clients have been non-cancer patients. HWR has been serving AIDS clients since 1984. Starting June 1, Hospice of the Western Reserve will launch its full-scale AIDS Team, headed by Stephen Adams. The AIDS Team will bring the same kind of core care and attention to people with AIDS that it has shown in dealing with cancer patients and other terminally ill. Part of Adams' job will be to get out the word about hospice to the HIV community. "The AIDS community may be less informed about what hospice is because they're too young to realize hospice is there, or they may think hospices are just for older people."
With the specialized role that a hospice plays, there's little chance HWR will reinvent the wheel by duplicating services already available. But Simpson and Adams are careful to point out that replacing current services is not in the plans. "It would have been an arrogant stand to supplant the existing Taskforce," says Simpson. Adams agrees, saying, "Our strength is in our specialization."
Hospice of the Western Reserve provides its services in-home and in assisted living facilities and nursing homes. There are HWR facilities in Mentor, University Circle and Westlake, in addition to a new branch in Solon. On May 22, the cornerstone will be laid on a new residential facility at E. 185 Street. Forty beds will be available and will provide additional square footage in patients' rooms for caregivers, including the gay and lesbian caregivers of people with AIDS. "Our mission is still to reach people in their homes," says Simpson. "This is just another resource, not a replacement of existing services."
Though hospice is an old concept, Simpson notes that it's only recently that people have opened up to talking about the issues that surround dying. "There is a greater willingness to discuss death now than back in the mid-80s. People didn't want to bring hospice in because it looked like you were giving up. But this isn't about death and dying. It's about life and living." Adams agrees with the affirming image Simpson paints. "I get people who say, 'You work in a hospice? How depressing.' But it's not. It's a privilege to be part of this journey."
Interested in learning more about the services a hospice can provide? Contact the Hospice of the Western Reserve at 951-8692.
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