“Sunset and evening star,
And one clear call for me!
And may there be no moaning of the bar,
When I put out to sea”
Alfred Lord Tennyson
In early 19th century Europe, hospice was a rest house for travelers. Today, the meaning has evolved, but skillful, compassionate hospice care still aids illness-weary travelers to transition from the final stages of a serious illness into death. The goal of hospice is not to help a person die; rather it’s to help a person live as well as possible until they die.
In hospice, quality of life is prioritized over length of life. As I explain in “What’s in a Name: Palliative Care,” hospice care is a subset of palliative care, and emphasizes symptom management when end-of -life care becomes appropriate. Best medical judgment places life expectancy at six months or less at this point. Entering hospice is not a unilateral decision; both patients and physicians agree that this shift in care is appropriate.
In adult patients, curative efforts no longer seem beneficial at this point, so medical care concentrates on maximizing spiritual, physical, and emotional comfort. In hospice care for babies or children with terminal illness, curative treatments continue in conjunction with maximal symptom management. This distinction is comforting to many parents who are losing a member of their family to illness at such a young age. And, just as in the larger scope of palliative care, hospice works collaboratively with a patient’s family to provide compassionate support for all.
Hospice care can be provided in patients’ homes, in nursing homes, in assisted-living centers, in specialized areas of hospitals, and in freestanding, residential hospices. There are several levels of hospice care, depending on a patient’s need for symptom control. At points in a patient’s care, there may be need for continuous care, when a nurse provides 24-hour bedside symptom management, if uncontrolled symptoms such as anxiety, unrelenting pain, or serious breathing difficulties are causing distress.
Patients may cancel (or revoke) their hospice benefits at any time. There are different reasons for revocation. Sometimes, patients are feeling better and want to try aggressive treatments, aimed at curing their illness, again. Occasionally, patients or their families may feel that the staff or agency providing hospice care is not a good match. Patients who revoke hospice care may re-enroll with that agency or with another agency at a later date.
Aside from good symptom management and compassionate support of patients and families, hospice also provides two specific benefits that are important to mention. There is a respite benefit to each patient that allows their primary caregiver (often a spouse, parent, or grown child) the opportunity for a rest from those responsibilities, for at least 5 days.
The respite benefit allows a caregiver to take a brief vacation, complete out-of-town business, or simply sleep soundly through the night for several days in a row. Respite benefit is an important and much-appreciated benefit for most families; however, a caregiver is not required to use this benefit.
A second benefit is that of bereavement care, which is built into the overall hospice insurance coverage. This benefit allows for spiritual support of patients’ families for a year after the patient’s death. The bereavement benefit can be a powerful and comforting resource to grieving individuals and families.
Although enrollment in the hospice benefit requires that a doctor’s best medical judgment places a patient’s life expectancy at 6 months or less, there are patients who remain on hospice for several years, with symptoms of their terminal illness progressing during that time. There must be evidence of decline to continue hospice care beyond the initial period of certification.
Unfortunately, many patients do not elect their hospice benefit until their illness has progressed to a stage where death is only a few weeks or days away. This delayed affiliation with hospice deprives patients and their families of the holistic suffering-support that is a hallmark of good hospice care.
Finally, there are patients who improve so dramatically after a few weeks or months of hospice care that they can actually be discharged from hospice and return to their regular medical insurance benefits. When this occurs, the hospice team believes that a patient has stabilized and may, in fact, have a life expectancy of longer than six months. Such patients may return to hospice care at any appropriate time in the future.
Whew!! A lot of information, but it’s important information that isn’t known by most folks. For patients and their families who are suffering because of serious illness near the end of a patient’s life, hospice can provide desperately needed comfort and relief. The world is full of illness-weary travelers nearing the end of their journeys. Spread the word; you might be providing the very blessing such folks need right now.
SL Hines, MD