Hospice Basics
May 25, 2017

Families Rate Hospice as Excellent with Highest Ratings Linked to Longer Lengths of Stay

Family spending time with hospice patient smiling

Family members of patients with advanced cancer who died while under hospice care were more likely to report that their loved ones received appropriate symptom relief, had their wishes honored and died in their preferred location than were relatives of nonhospice patients. Further, the earlier patients were referred to hospice, the higher the families’ approval ratings, according to a report published in the Journal of Clinical Oncology.

“Overall, longer hospice stays were associated with family perceptions that patients received ‘just the right amount’ of pain medication, greater patient-goal attainment and higher rates of family-reported excellent quality of end-of-life (EOL) care, compared with short stays,” write the authors. “Together, our findings suggest that encouraging hospice enrollment, particularly enrollment weeks before death, may improve EOL experiences of patients with cancer.”

Investigators analyzed interview responses of bereaved family members (n = 1,970) of 985 matched pairs of patients with advanced lung or colorectal cancers who had died either with or without hospice care. Patient data were derived from the Cancer Care Outcomes Research and Surveillance (CanCORS I and II) studies, in which nationally representative participants from five U.S. geographic regions were enrolled from 2003 through 2005 and followed through 2011.

The median length of hospice stay was 21 days (interquartile range, seven to 56 days) among all 1,257 of those enrolled, out of a total of 2,307 decedents in the study whose relatives completed post-death interviews. More than one-third (36%) of patients were under 65 years of age, with a wide range of insurance types.

Key Findings

  • Hospice patients were more often perceived as receiving “just the right amount” of pain medicine than were nonhospice patients (80% vs 73%).
  • A higher percentage of patients in hospice than of those without hospice were given “just the right amount” of help with dyspnea (78% vs 70%).
  • Patients enrolled in hospice were more likely to have their EOL wishes followed “a great deal” than were those not in hospice (80% vs 74%).
  • Hospice enrollees were more likely to die in their preferred place than were nonhospice patients (68% vs 39%).
  • More hospice patients’ than nonhospice patients’ overall EOL care was rated as “excellent” by their families (57% vs 42%).

Lower Likelihood of Inappropriate Amount of Care with Hospice

  • Families of hospice patients were less likely than nonhospice families to report that “too little” pain medicine was given (8% vs 11%).
  • Families were less likely to report that hospice patients received “less help than wanted” with dyspnea than were nonhospice families (12% vs 18%).
  • Families of patients in hospice were not more likely than families of nonhospice patients to report the receipt of “too much” pain medicine (10% vs 11%).

Hospice patients’ symptoms were better controlled overall, point out the authors, despite the observation that hospice patients had a higher symptom burden than those who did not die under hospice care. “Of note, the families of patients enrolled in hospice were not more likely to report that patients received ‘too much’ pain medicine, rather they were more likely to report that patients received ‘just the right amount,’” they write.

Importance of Hospice Length of Stay

  • Families of patients enrolled for > 30 days more frequently reported that their loved ones received “just the right amount” of pain medicine compared with those enrolled ≤ 3 days (85% vs 76%) and were more likely to rate the overall quality of care as “excellent” (65% vs 50%).
  • Family members of patients in hospice for > 30 days were more likely to report that the patients’ EOL wishes were followed “a great deal” compared with patients enrolled ≤ 3 days (87% vs 79%).
  • The earlier the hospice enrollment, the greater the likelihood that patients would die in their preferred place (> 30 days in hospice, 75%; eight to 30 days in hospice, 67%; four to seven days in hospice, 61%; ≤ 3 days in hospice, 48%).

Because so many U.S. patients with advanced cancer are enrolled within three days of death, the finding of the beneficial effect of the duration of hospice enrollment takes on great importance, note the authors. “Families of patients who received more than 30 days of hospice care reported the highest quality EOL outcomes,” they write.

“Although early hospice enrollment may not be possible for all patients, our data suggest that more attention should be focused on efforts to enroll patients with cancer into hospice earlier, because the median length of stay for patients enrolled in hospice care in the United States is only 17.4 days.”

Source: “Family Perspectives on Hospice Care Experiences of Patients with Cancer,” Journal of Clinical Oncology; February 1, 2017; 35(4):432-439. Kumar P, Wright AA, Hatfield LA, Temel JS, Keating NL; University of Pennsylvania, Philadelphia; Harvard Medical, Boston; and Brigham and Women’s Hospital, Boston.