End-of-Life Care

Whether in the midst of an acute, life-threatening crisis or during a terminal but ongoing illness, elders and their families must make many medical, legal, and practical decisions. These choices are difficult, intellectually and emotionally. Being informed can help ease some of the burden.

Palliative Care

Palliative care is any form of treatment that focuses on reducing the severity of disease symptoms rather than providing a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing a serious illness. Palliative care is not only for end-of-life situations. In addition to pain management for the elder, palliative care may include supportive services for caregivers.

Hospice Care

Hospice care is provided for people with a terminal illness when life expectancy is limited. Hospice care services may be chosen by an individual or a family, or recommended by a physician. In all cases, the elder's physician must be involved to verify that the patient has a terminal illness that cannot be cured.

There is no absolute rule linking admission to a hospice program to a specific number of days or months a terminally ill patient is expected to live. Many people (including some medical professionals) mistakenly think that to gain entrance to hospice, a person is expected to live less than six months. This is not true.

The "six-month rule" applies only to what is known about the disease, not the person suffering from the disease. In many instances, people can be reevaluated after the first six months and approved for continuing hospice care. In some cases, care can continue for 12 months or even longer. Periodic re-evaluations determine eligibility under federal Medicare guidelines.

Hospice professionals are skilled at making these decisions and explaining their work to elders and families. Although it may be difficult to even consider hospice care, you may find it helpful to meet with a representative who can discuss when the right time may be.

Hospice Care Locations and Providers

Hospice care can be provided in the home or at an extended care facility, such as a nursing home or assisted living center. There are also freestanding hospice centers, sometimes called residential hospice centers. Some families prefer this kind of setting because it feels more like home and less like an institution. While these centers include medical staff, counselors also attend to the non-medical needs of patients and their families, such as providing emotional support and pastoral counseling. These services are often just as important as medical care.

Hospice services are available through private and nonprofit hospice agencies and programs, home health or visiting nurse associations, group medical practices, and hospitals and extended care facilities, such as nursing homes.

Hospice Care Costs

Medicare, Medicaid, and private insurance plans cover the costs of hospice care:

  • Medicare: Hospice care is a benefit under Medicare Hospital Insurance (Part A). This can be confusing because this care can be provided in the home and not a hospital. Once a patient is admitted to hospice it means they agree that they will only receive non-curative medical care and support services for their terminal illness. You will need the elder's doctor to certify that the elder is eligible for hospice.
  • Medicaid: Hospice care is available to low-income, terminally ill adults without Medicare coverage through their state's Medicaid program and is similar to the Medicare hospice benefit.
  • Private insurance: Most private insurance companies include hospice care as a benefit, but you should check the elder's policy carefully to see if benefits can add to what Medicare provides.
  • Private pay: If the elder in your care is not eligible for Medicare or Medicaid, and has no health insurance, hospice services can be paid on a fee-for-service basis.

For more detailed information on insurance eligibility, services, and payment options, go the Web site of Hospice Net, a nonprofit organization that provides information and support to patients and families facing life-threatening illnesses. See also Insurance for additional information.

Hospice Care Resources

There are several organizations that provide in-depth information on hospice care and can help you locate a hospice facility in your state.

  • Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality palliative care services. Visit its Web site to find out more about what palliative care is, how to know if it is right for you, and how to get it.
  • National Association for Home Care and Hospice is a trade association that represents home care agencies, hospices, and home care aide organizations. It also offers a user-friendly tool on its Web site to locate agencies providing hospice when you enter your city, state, and Zip Code.
  • National Hospice and Palliative Care Organization (NHPCO) is a nonprofit organization that promotes hospice and palliative care in each state, including education and advocacy, technical assistance, support, and information for professionals, families, and friends. To find hospice programs in your area, go to the Web site, click on "Find a Provider," then enter your city or state. NHPCO also runs Caring Connections, a program dedicated to building a national consumer initiative to improve care at the end of life.

Additional End-of-Life Resources

  • Americans for Better Care of the Dying is dedicated to ensuring good end-of-life care. The organization focuses on improved pain management, better financial reimbursement systems, enhanced continuity of care, support for family caregivers, and changes in public policy.
  • The American Psychological Association (APA) has extensive information about psychosocial end-of-life concerns on their Web site.
  • Compassionate Care ALS provides those affected by ALS (Lou Gehrig's disease) with educational and legal resources, respite opportunities, subsidies for living aids and assistance, and conversations with patients and their caregivers, families, and friends.
  • Growth House, Inc. is a gateway to resources on life-threatening illness and end-of-life care issues. Its online "Handbook for Mortals" has good information for caregivers and elders.
  • The National Cancer Institute (NCI) has a helpful fact sheet, "End of Life Questions and Answers" on its Web site.
  • Net of Care is a program providing information and resources for caregivers taking care of family members who must cope with severe pain. Its integrative pain medicine Web site contains information on complementary treatments.

Continue to Bereavement...