Selecting and Financing End-of-Life Care Programs

In 1999, approximately 50 percent of nearly 2.4 million Americans died in a hospital; 25 percent in their homes or elsewhere; and another 25 percent in nursing homes.

"When dealing with a terminal illness that cannot be cured, it is very important for all members involved in end-of-life care - the patient, family, and primary care physician -  to be able to openly discuss the options that are available," said Robert S. Juhasz, DO, past president of the Ohio Osteopathic Association.

Dr. Juhasz, an internal medicine physician who is also associate medical director of the Cleveland Clinic Foundation Willoughby Hills Family Health Center, said three major categories related to end-of-life care must be examined and understood by patients and their families. These include:

"The osteopathic medicine approach involves caring for all' of a patient, from the beginning of life until the end of life," said Dr. Juhasz. "A very important part of that whole-person approach includes the patient's family and loved ones, especially when it comes to making end-of-life decisions. That means that as a DO, I believe in working closely with terminally ill patients and their families to help them make educated decisions about end-of-life care that meet their specific physical, emotional, and spiritual needs. This also includes helping them to understand the various care options they have and the financial considerations that are associated with the type of care they choose."

While patients and their families need to work with their primary care physician and explore all of the options for end-of-life care, Dr. Juhasz said that no matter how much planning a patient and family members do, "death is ultimately a very private, personal issue. It is the patients' lives, and their deaths and their wishes must be respected."

Comforting Through Palliative Care

According to Dr. Juhasz, for nearly all terminally ill patients, the time comes when curing them of the illness is no longer a viable alternative. At that point, he said, patients and their families must decide if they are ready for palliative care.

The goal of palliative care is not to cure, but to provide comfort and maintain the highest possible quality of life for terminally ill patients for as long as life remains. "A common misconception about palliative care is that it means doing nothing for the patient," Dr. Juhasz said. "This is completely untrue. A well-rounded palliative care program addresses the physical and emotional health and the spiritual needs of the patient and family." He said the focus is not on death, but on compassionate specialized care for the living.

Palliative care takes a comprehensive, team-approach that involves the patient, family members, loved ones, the primary care physician, the clergy, support counselors, and others. Palliative care services can be provided to the terminally ill patient in a number of settings, including a hospital, the patient's home, a nursing home, an extended care facility, or other specialized units. Because medical needs vary depending on the disease from which a terminally ill person is suffering, palliative care programs may vary slightly between more common conditions, such as cancer and AIDS, and diseases that may change brain function and lead to coma or dementia.

Hospice: Care with Dignity

One of the primary contexts within which palliative care is administered is called "hospice," a word that derives from the Latin "hospitium" and means guesthouse.

"Hospice is not a place,' but a concept of care," said Dr. Juhasz, "that helps dying patients maintain their dignity and quality of life." It emphasizes comfort care, rather than curative treatment, that addresses the patient's physical, emotional, and spiritual well being. Hospice regards the patient and the entire family as a whole and provides supportive services for all members, including counseling and bereavement services.

There are more than 3,100 hospice programs in the US and in 1998, hospice cared for nearly 540,000 Americans. Dr. Juhasz says that hospice cares for more than half of all Americans who die of cancer and for growing numbers of those suffering from chronic, life-threatening diseases, such as end-stage lung disease.

Because hospice care is a concept, it can be administered in a number of physical settings, including patients' homes, units within a hospital, stand-alone hospice organizations, extended care centers, and nursing homes. Before patients are admitted to hospice, their personal physicians and hospice physicians discuss their history, current physical symptoms, and life expectancy. The physicians and hospice staff then meet with the patient and family to discuss the hospice philosophy, the services that are available, and the expectations the family has for the care that will be provided, including the medication and equipment needs and financial and insurance resources.

Financing Considerations and Options

Typically, hospice care at the end of life is covered by Medicare, Medicaid, most private insurance companies, HMOs, and other managed care organizations, said Dr. Juhasz. Community contributions, memorial donations, and other gifts often make free care possible for patients without sufficient funds, and some programs charge patients according to their ability to pay. However, Dr. Juhasz said it is extremely important for the patient and family to be aware of and able to discuss end-of-life care costs and coverage, as well as other sources of income that may be necessary to cover the family's living expenses. He suggests that early on in the end-of-life situation, families consult with their primary care physician, insurance carrier, lawyer, financial planner, accountant, appropriate governmental agencies, and other experts. Dr. Juhasz also recommends that patients and their families discuss and, when appropriate, complete advance directives while they are competent to make sound decisions and make their wishes known. Advance directives are legal written documents that instruct physicians in the type of medical treatment and care.

In addition to health insurance policies, Dr. Juhasz recommends that families of terminally ill patients work with an experienced and trusted advisor to examine other healthcare coverage and benefits that may be available from sources such as Social Security, government and private disability insurance, or long-term care insurance. If the end-of-life care period is expected to be longer than the maximum six months of hospice care covered by Medicare, families should also seek professional advice about their eligibility for long-term care insurance. Medicare provides limited coverage for long-term care, while Medicaid covers more long-term care. Other potential sources of income which may be needed by the family during the end-of-life care period and after, can also include:

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