Death is coming home again. After decades of being tucked away in hospitals and nursing facilities, patients diagnosed with terminal illness are turning to hospices as a way of finding a comfortable, dignfied death, surrounded by family members and close companions.
At its most basic level, a hospice is a system of care designed to meet the medical, emotional and spiritual needs of people in the final stages of life. That care is provided-sometimes in the patient’s home, sometimes not-by family members, with the assistance of a team of physicians, nurses, counselors, social workers, clergy and trained volunteers.
Modeled on similar institutions in Great Britain, the first hospice opened in the U.S. in 1974. The growth in the U. S. has reflected our discomfort with a medical system that places most of its attention on prolonging life rather than on the dying patient’s need for dignity and comfort.
There are about 1,700 hopsices in the U.S., providing care to more than 50,000 patients every day. In 1983, Medicare benefits were extended to hospice services, and since then a significant number of insurance companies and managed-care providers have joined in, modeling their coverage on Medicare.
One of the virtues of hospice care is its flexibility. From patient to patient, the kind of care that’s given varies according to the stage of the dying process. As a rule, a hospice is usually brought in after a patient has been diagnosed with six months or less to live.
One of the unique aspects of a hospice is that it responds to the needs of the patient and family. Members of the hospice team have experience in giving comfort to the dying and their families.
Nurses, for instance, are familiar with nutritional and digestive problems in dying patients, who may suffer nausea or lack of appetite either because of their illness or medication.
Special attention is also given to the alleviation of pain. Rather than receiving painkillers at rigidly scheduled times, which causes a cycle of anticipation and fear, terminally ill patients are kept as pain-free as possible at all times.
Although it is up to family members and friends to care for their loved one, most hospices offer some kind of respite care. Because there are tremendous stresses in taking care of the dying, most caregivers need to be able to get away for a few hours.
Volunteers play an important role in that aspect, says Lisa Marie Anderson, liaison for Rush Hospice Partners.
“We try to use volunteers to help people get out and maintain a semblance of normalcy. We have one gentleman who likes to go to his biweekly poker game with his friends, so a volunteer comes in while he’s out.
Typically, patients come to a hospice in one of two ways. The first is by a physician’s referral; the second, which is becoming more common, is when the patient or family approach the hospice themselves.
A number of basic questions should be asked before choosing a hospice.
“Not every hospice is the same,” says Jan Klingberg, director of development for Hospice of the North Shore. “They need to be certain that the hospice is certified for Medicare benefits, because if it’s not certified, then they’ll have to deal with bills and with supplemental insurance at a time when they’re under a great deal of emotional pressure.”
Medicare benefits last for a total of 210 days, and they pay for doctors, nurses, certain medical supplies and some social services. Based on the Medicare reimbursement, the national average for one-day stay in hospice is about $90.50. However, most hospices, because of the philosophy of the concept, will do everything possible, including raising private donations, to care for all patients.
Anderson, of Rush Hospice Partners, notes that sometimes patients improve and live beyond the Medicare seven-month limit.
“What we do is watch the patient very closely, and if they’re improving and are no longer appropriate for hospice care, we will discharge them and save those days for when they begin to deteriorate.”
When searching for a hospice, it’s important to get a sense of what the organization’s focus is. Some hospices emphasize the clinical approach more than social or spiritual services. Is around-the-clock nursing available, and if not, can the hospice help the family obtain those services?
You should also ask the hospice about the level of expertise of their staff. How long has the hospice been providing service? What kind of experience does the nursing staff and the director have?
Because most hospices rely on volunteers, ask what kind of training they receive. Is counseling available and for how long? To help with the grieving process, says Anderson, some hospices provide counseling services for the family for a year after the death.
Another area of service that should be studied is the relationship between the hospice and hospitals and long-term care facilities. Will you be able to keep your own physician? What happens if Medicare or insurance benefits run out? If medical attention has to be given that the hospice can’t handle, what hospitals provide that care?
Finally, will the patient be able to continue with chemotherapy or radiation? That can be an important question because some hospices believe that such treatments are not compatible with the idea of a person preparing for death.
Whatever your decision, Klingberg says, the patient and his or her family members should not wait too long to get help.
“We’ve never had a patient or family say: `We called you too soon.’ We have very often had families say: `We wish we had called you sooner,”‘ she says.
Consumers can get information from the National Hospice Organization (Suite 902, 1901 N. Ft. Myers Drive, Arlington, Va. 22209; 703-243-5900). It publishes a nationwide directory of hospices and provides information to consumers.
The American Cancer Society offers a free booklet, “Hospice: A Special Kind of Caring.” The organization also has a referral list of hospices around the country. For info, write or call: The American Cancer Society, 90 Park Ave., New York, N.Y., 10016; 800-ACS-2345.
