Hospice is a choice that many people with ALS make for their care during the final stages of the disease.
Quest, MDA’s magazine, explores the topic of hospice service in the November-December 2003 issue. The article includes the varied hospice experiences of surviving family members of two people who had ALS, Judith Kay Hill of Edmond, Okla., and Randy Troyer of Spokane, Wash.
Here’s a brief summary of some of the concepts presented in the Quest article. "Caring and Comfort at the End of Life."
What is hospice?
The National Hospice and Palliative Care Organization defines hospice care as "a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes."
In addition, hospice care includes support for a patient’s loved ones. It’s centered around the idea "that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so."
How can I find a hospice program in my community?
Hospice programs are listed in the phone book, but referrals from people with firsthand experience are often the most reliable sources. Good resources include MDA staff, support group members and others who are dealing with ALS. Also, the National Hospice and Palliative Care Organization, (800) 658-8898, has a nationwide database of providers.
Are there different kinds of hospice programs?
In most cases, hospice care is provided in the patient’s home. Hospice care also is provided at hospice centers, hospitals, nursing homes and other long-term care facilities.
Hospice organizations may be nonprofit or for-profit. Nonprofit hospices usually take clients who have no means of paying for the services.
Are there specific concerns regarding hospice for someone with ALS?
Most hospices have extensive experience working with patients who have diseases like cancer, but many are unfamiliar with ALS. Before you select a hospice, be sure to ask if the staff has experience with ALS. If you face limited hospice choices, MDA staff can help familiarize staff with the unique concerns and needs of people with ALS.
Also, equipment is often an issue. Some MDA health care service coordinators said they often encourage patients to obtain any special or costly durable medical equipment before going on hospice care. Many hospices rely on equipment loan closets and can’t afford to supply higher-tech devices such as power wheelchairs, positioning systems or communication devices. Also, some insurance benefits — including Medicare — have specific hospice coverage that, for example, provides for manual wheelchairs but not power wheelchairs.
What about ventilators and feeding tubes?
Most hospices don’t accept patients who use ventilators because a vent is viewed as a life-prolonging form of treatment, but there are exceptions. The Hospice Patients Alliance advises that ventilator users might need to work closely with their physicians to obtain hospice care, and that ventilator use can also complicate the hospice "certification" process for insurance or Medicare coverage.
Feeding tubes are generally acceptable, however, as they’re seen as a means of providing comfort and sometimes the best way to administer medication.
What about cost and insurance coverage?
Hospice care is covered under Medicare, Medicaid in most states, most private insurance plans, HMOs and other managed care organizations. Families usually have very low out-of-pocket expenses, such as co-pays. If you have insurance, ask about hospice coverage.
Respite care is a service that provides temporary care to a person with a disability or serious illness in order to give caregivers and families a short break. Using respite care can enable family caregivers to better meet the daily demands of in-home care, but sometimes it’s hard to find this valuable service.
The National Respite Locator Service (NRLS), an online resource of the ARCH National Respite Network and Resource Center, helps caregivers find the respite service closest to them. NRLS also is useful when a family travels or moves to another state.
You can access the free locator service and a host of other good respite information at www.respitelocator.org. If you’re not online, call (800) 473-1727, extension 222.