Demographic/clinical profiles of the study patients are presented in . The study patients averaged 84.6 years in age, with a standard deviation of 7.5. The majority of the subjects (N = 16) were African Americans. The majority of the patients (N = 12) were widowed. Dementia was the leading hospice diagnosis: 10 patients had dementia as a primary diagnosis and 8 patients had dementia as a secondary diagnosis. Nondementia-related primary diagnoses included cancer, chronic renal failure, and stroke.
Characteristics of the Study Patients
Levels of Hospice Knowledge
A 3-level categorization appeared to best describe level of knowledge on the part of caregivers/patients before the hospice enrollment decision: (1) no/little knowledge (no knowledge group), (2) knowledge acquired by prior experience or education (some knowledge group), and (3) knowledge acquired by health care-related occupations (insider knowledge group). The highest level of hospice knowledge was found among 3 caregivers who reported their occupations as health related. They included a physical therapist at a hospital, a nurse working with elderly patient, and a hospice nurse. The second level of knowledge, found among 7 cases, came from prior direct/indirect experience or education. Direct experiences included family/patient hospice experiences such as “family members were hospice patients.” Indirect experiences included reports such as “a caregiver's best friend's mother had hospice care.” Some families with no prior experience reported that they were well educated and had a thorough knowledge of hospice. The lowest level of knowledge— no knowledge—was found among 10 cases where patients/caregivers knew nothing or very little about hospice until it was presented to them as an option.
Levels of Hospice Knowledge and Initiating Hospice Discussion
Only 2 distinguishable relationships between level of hospice knowledge and enrollment decision making emerged. The first pattern was observed among the Insider group—the 3 cases armed with knowledge acquired through health care-related jobs. The caregivers took the initiative and asked a physician for referral to hospice. For the remaining 17 cases, including both the “some knowledge” and “no knowledge” groups, health care providers (an attending physician and a doctor or nurse at a hospital or other facility) first mentioned hospice, and the patients accepted it by forgoing treatment. This is consistent with findings of previous studies that health care providers most often play the leading role in hospice referrals.5,16
Levels of Hospice Knowledge and Readiness to Forgo Treatment
To be eligible for hospice care, the patient must waive all rights to Medicare A payments for any Medicare services that are related to the treatment of the terminal condition for which hospice care was elected or a related condition. Patients in our study were determined to be “likely to forgo” treatment if the interviewees (1) expressed goals for care that focused on comfort; and/or (2) their responses included sentences such as “life-prolonging care is no longer available,” “effective treatment options have been exhausted,” or “have been rejected” by the patient. In addition, hospice admission diagnosis was considered to assess the patients' readiness to forgo treatment. Traditional hospice patients have diseases with a relatively predictable time frame for death, such as cancer. However, some chronic diseases, particularly dementia, do not have a predictable time frame but are likely to impose high burdens of caregiving on family caregivers, increasing their willingness to forgo treatment.17,18
We questioned why the 10 cases with the lowest level of knowledge (no/little prior knowledge or experience of hospice) accepted the recommendation to enroll in hospice. Examining their clinical profiles revealed that 6 had medical conditions unlikely to respond to medical treatment. Two of these suffered from renal failure and rejected dialysis, suggesting that their goal was suspension of curative treatment. Three others were in the last stage of cancers with a low survival rate (lung, pancreatic, and bone) and reported no success with previous treatments. The sixth patient was a long-stay nursing home resident in the last stage of dementia and debility; the patient had been tube fed before hospice enrollment and died soon after hospice enrollment.
The other 4 “no knowledge” hospice users did not fit this “likely to forgo” profile. All of them were male patients who had been discharged from hospitals to skilled nursing facilities for rehabilitation services following stroke. They appeared to view hospice as a means for obtaining extra rehabilitative help to become more functional rather than to ease the process of dying. One of them was later discharged alive from hospice care because his condition had improved; the other 3 had received hospice care for more than 6 months by the time of our follow-up.
Of the 7 patients in the some knowledge group, 5 suffered from dementia. One woman dying with dementia was discharged from a hospital to a nursing home facility where she developed bedsores. The primary caregiver, having had very positive experiences with hospices in the past, felt that hospice would provide extra care to help her sister be more comfortable. Another patient with Alzheimer's had lived at an assisted living facility for 10 years when she was hospitalized with pneumonia. Her daughter, who knew about hospice through the experience of her best friend's mother's, witnessed her mother's discomfort and followed the hospice option suggested by the hospital. One male patient with dementia was living alone at his own house with hospice services and Alzheimer's day services after his wife had died under hospice care. When interviewed, his daughter said, “It is a good thing that hospice and day care exists.” The caregivers of 2 other patients dying of dementia were aware of hospice from indirect hospice experiences. Finally, the remaining 2 patients in the “some knowledge group” had stomach cancer and thus fit the traditional hospice clinical profile, but persons with their diagnosis of stomach cancer generally have a longer prognosis than the kinds of cancer found among the no knowledge group.
Level of Hospice Knowledge and Transfers
To track changes in place of hospice care, the sample was first classified into 2 groups (home vs facility group) depending on whether the patient was at home or at a facility (nursing home or assisted living) at the time of the hospice enrollment decision. Current nursing facility residents were further categorized based on length of stay. Following a previous study,19
nursing facility stays of 90 days or less were considered short stays, and those over 90 days were considered long stays20
Transfer Experience by Place of Residence at the Time of Hospice Enrollment Decision
Some transfers occurred at the time of hospice enrollment to receive hospice care. Of the 7 short-term nursing home/assisted living facility residents, 2 moved from facilities to home and received hospice care at home. Of the 9 patients who stayed at home at the time of hospice enrollment, 4 moved to facilities and received hospice care there. Of those 4 patients, 3 lived alone at the time that the enrollment decision was made, consistent with previous findings that living alone is a major determinant of nursing home placement.
In only 2 cases, transfers occurred while the patients were receiving hospice care. One “short-term” resident patient, who initially received hospice care in a nursing home, later moved back home; the other patient, who initially received home-based hospice care, moved to a nursing home. For both of these patients, the family caregivers were in the insider knowledge group—that is, their caregivers had health care-related occupations. The first patient had lived with her family before her short stay in a nursing home, where she first received hospice care. Her daughter worked for a hospice and took the initiative in obtaining hospice enrollment by talking to family and doctor. Later, she moved her mother back home, where the mother lived for 2 weeks, and then transferred her to the hospice inpatient facility where she died. The second patient, with dementia, received home-based hospice care and stayed at home with her aging husband; she then moved to a nursing home and continued to receive hospice care there. The primary caregiver, the patient's daughter, was a nurse working in a long-term care facility. She not only first mentioned the hospice option and spoke with her doctor but also made the decision to change the place of care to the nursing home.
Level of Hospice Knowledge and Request for Additional Services
Hospices are required to provide any noncore, discretionary services to patients for which a need is determined. These services can be outsourced at the hospice's discretion and may include continuous home care; occupational, intravenous, speech, and physical therapy; durable medical equipment and supplies; respite care; personal care; homemaker/household services, and other high-tech care.
Of the 3 caregivers in the highest level of knowledge group, 1 was a hospital-based physical therapist who knew about hospice and first mentioned hospice to the neurologist. The patient was a long-stay (more than 3 years) nursing home resident with a degenerative neurological brain condition when she enrolled in the hospice. The caregiver did not change the place of residence but made sure that the relative received therapies, including physical therapy, that the nursing home had not provided. The caregiver mentioned
Not enough people know about services. Many think that hospice is for `when you are dying tomorrow.' Many don't know about other services that would make quality of life better, like therapies.