While hospice provides care mainly for a person who is terminally ill, many services are also available to help family members cope with the challenges they face as their loved one approaches death.
These services are especially important if hospice care (see section below for details) is provided in the ill person’s home, where family members are typically the primary caregivers.
To ensure that family-support services will be offered, ask any hospice agencies that you are considering the following questions…
- What kind of training will you offer to family members and others who will be part of the personal care team? At a minimum, family caregivers should be taught how to turn, lift and move the patient in bed safely…assist with toileting (bedpan, diaper or commode)…operate oxygen equipment…administer medications…and protect against pressure sores by turning and keeping the patient’s skin clean. Caregivers without adequate training can quickly become overwhelmed by the responsibility and be at a total loss when a crisis occurs.
- What support will we have when—and after—our loved one dies? Supporting loved ones at the end of life is part of the core mission of hospice care, but stories of families who feel abandoned during their time of grief are too common. The hospice should offer practical help with things like notifying the Social Security Administration (and other benefit programs) and disposing of unused medication, as well as guidance on finding grief counseling and support groups.
HOW HOSPICE WORKS
There are more than 4,000 private, nonprofit or government-owned hospice agencies in the US. These agencies provide hospice care to most people in their homes, while others are served in residential facilities, nursing homes or hospitals.
Though hospice providers are on call 24 hours a day, most routine care falls to the patient’s own caregivers. Note: Even if the patient is in long-term care of a hospital, his/her family needs to remain involved.
Hospice care is usually paid for by Medicare, Medicaid and the Veterans Administration. Insurance coverage for hospice care under private health insurance policies varies.
Source: Linda R. Beck, JD, BCPA, an attorney and board-certified patient advocate who practices at Square One Elder and Health Advocacy LLC, San Luis Obispo, California. She is a member of the Alliance of Professional Health Advocates and served for five years as a long-term-care ombudsman for San Luis Obispo County. She also is a member of the Leadership Council for the National Consumer Voice for Quality Long-Term Care.
