Progressive disability often accompanies fatal illnesses. People may gradually become unable to tend to a house or an apartment, prepare food, handle financial matters, walk, or care for themselves. Most people who are dying need help, at least during their last weeks and often for much longer before that. Such disability should be anticipated, perhaps by choosing housing that is accessible to wheelchairs and close to family caregivers. Services such as occupational or physical therapy and home health nursing may help a person remain at home, even when the disability progresses.
Disability and illness can stress families financially. Many families deplete their savings while caring for a dying family member. Medicare does not pay for many services dying people need, such as long-term care in nursing homes or home health aides at home. Services provided by a hospice program are the exception in that they are usually quite comprehensive. However, hospice programs mostly provide services in the home, not all people qualify for a hospice program, and doctors are often reluctant to certify the 6-month prognosis required for hospice coverage.
The family should investigate the cost of care for a family member's serious illness. Information about coverage and regulations can take substantial and diligent work to obtain. Consulting the doctor and care team, visiting an eldercare locator or calling 1-800-677-1116, or consulting a social worker from a hospital or health plan are good places to start.
Family members often provide most of the care at the end of life for free, but they should explore how professional caregivers can help them so that the burdens are tolerable. There may be costs of giving up employment as well as expenses of drugs, home care, and travel. The family should talk openly about costs with the doctor, insisting on reasonable attention to costs and planning ahead to limit or prepare for them.
Planning for the dying person's estate is advisable. Although discussing property and financial issues is hard to do when death is impending, it is usually a good idea. Doing so often reveals things that could be signed or arranged by the dying person, easing the burden on the family. Some attorneys specialize in elder care and can help people deal with financial and legal concerns.
Last full review/revision June 2013 by Elizabeth L. Cobbs, MD; Karen Blackstone, MD; Joanne Lynn, MD, MA, MS