Hospice provides a range of unique benefits and services including home visits, access to a team of workers, and needed medication and medical equipment. The decision to enroll in hospice is difficult because of the complexity and quantity of the information and stressful situation that the illness creates. Little is known about how families make such decisions and what information is most important. Casarett and colleagues surveyed patients and families to determine what they knew about hospice and what their priorities were in making decisions about enrolling in hospice.
The study was conducted at a large urban hospice and targeted patients and families who were being offered hospice services. Patients and families underwent a 10-minute interview based on 100 pilot interviews with bereaved caregivers. The interview included eight questions about hospice such as, “Who pays for hospice?” Interviewees were asked to rate these questions according to whether they wanted to know “everything,” “a lot,” or “just what I need to know” in regard to each of the categories. They were then asked to identify three questions that they considered the most important in their decision to enroll in hospice. In addition to demographic data, the patients and/or families were asked about the extent to which the decision making was shared between patients and their families, using a five-point scale.
Of the 260 patients or families invited to participate in the study, 237 completed the interview. Of these, 73 participants (31 percent) could describe the goals and services of hospice, although only 27 (11 percent) knew about symptom management or comfort care and 11 participants (15 percent) knew about specific hospice resources and services.
Ninety percent of patients chose to enroll in hospice. Enrollment decisions were made by family members in more than one half of these cases, in large part because the patients were cognitively impaired. Families participated more when patients were of nonwhite ethnicity, older, and had a diagnosis other than cancer. When rating the information most desired for decision making, patients and families prioritized wanting information about: (1) visit frequency (60 percent); (2) payment for hospice services (59 percent); (3) and home-based practical help (52 percent). The lowest ranked categories of information patients and families wanted to receive were emotional support (18 percent) and spiritual support (12 percent).
The authors found that at the time of enrollment, patients and families had little knowledge about what hospice is and does, and that this lack of knowledge was not related to patient characteristics. They also indicated that although decision making is often shared among patients and families, families of older, nonwhite patients with a diagnosis other than cancer share more of the decisions. Patients and their families wanted to know about the frequency of visits, how hospice would be paid for, and what practical support hospice would provide. These factors are not the same as those that families identify as most valuable after the hospice experience.
The authors conclude that although information about hospice care should be tailored to the individual patient, targeting these aspects of knowledge at the time of decision making may best alleviate a patient’s or family’s concerns about enrolling in hospice.