Hospice provides a range of unique ...

Hospice provides a range of unique benefits and services including family circle visits, access to a team of workers, and emergencyed medication and medical equipment. The decision to enlist in hospice is difficult because of the complexity and quantity of the information and stressful situation that the illness creates. Little is known about to what extent families make such decisions and what information is principally important. Casarett and colleagues inspected patients and families to determine what they knew about hospice and what their priorities were in making decisions about enrolling in hospice.

The thought was conducted at a large urban hospice and targeted patients and families who were being propounded hospice services. Patients and families underwent a 10-minute interview based forward 100 pilot interviews with bereaved caregivers. The interview included eight questions about hospice as it is 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 ne to know" in regard to each of the categories. They were then asked to identify three questions that they considered the greatest in quantity important in their decision to record in hospice. In addition to demographic data, the patients and/or families were asked about the reach 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 studious mood 237 completed the interview. Of these, 73 participants (31 percent) could describe the goals and services of hospice, although simply 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 enlist in hospice. Enrollment decisions were made according to family members in more than single 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 greatest in quantity desired for decision making, patients and families prioritized wanting information about: (1) visit oftenness (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 base 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 repeatedly 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 commonness 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 greatest in quantity valuable after the hospice experience.

The authors finish 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 bear upons about enrolling in hospice.

CAROLINE WELLBERY, MD

Casarett D et al. Making difficult decisions about hospice enrollment: what do patients and families want to know? J Am Geriatr Soc February 2005;53:249-54

COPYRIGHT 2005 American Academy of Family Physicians

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