Families who felt their dying loved ones were referred “too late” to hospice care reported more unmet needs and lower satisfaction with the quality of care provided at the end of life. One of out of ten families indicated that hospice care was not provided soon enough according to research by the Alexandria-based National Hospice and Palliative Care Organization, which is published in the July issue of the Journal of Pain and Symptom Management.
Inadequate symptom management, poor care coordination, and insufficient emotional support were some of the problems associated with late referrals.
Researchers with the National Hospice and Palliative Care Organization and The Warren Alpert Medical School of Brown University, Center for Gerontology and Health Care Research were somewhat surprised to find that it was not the length of hospice service a dying person received but perceived late referrals to hospice that had a greater effect on the quality of care reported by family caregivers.
“While the majority of families felt their loved one was referred to hospice at the right time, those who thought they got hospice care too late reported greater concerns and more problems with care,” said Stephen Connor, NHPCO vice president for research and one of the authors of the study. “The better we can understand referral patterns and factors that influence hospice admissions, the more successful we will be at getting hospice care to patients and families at the optimal time.”
Timely referrals ensure that patients and families can experience the wide range of available services and benefits hospices can provide. Hospice provides symptom control, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Family members also receive support, caregiver training, and help coping with the loss of their loved one.
Experts agree that hospice is most beneficial when provided for at least three months. NHPCO reports that the median length of service was 26 days in 2005 with 30 percent of people served by hospice in the U.S. dying in seven days or less. Furthermore, while eight out of 10 Americans have indicated they would prefer to spend their final days at home, those who received hospice for seven days or less were more likely to be cared for outside of their homes.
“In many cases, families aren’t aware of what they are missing and don’t realize how hospice can make a world of difference for the comfort and quality of life for their loved ones,” added Connor. “One of the most common complaints hospice providers hear from families following the death of a loved one is ‘why didn’t we get hospice care sooner?'”
The study, “Timing of Referral to Hospice and Quality of Care,” was based on data collected through the Family Evaluation of Hospice Care, an Internet based repository containing more than 250,000 surveys from families collected from nearly 1,000 hospice programs over the past two years. Developed by Brown and NHPCO, the Family Evaluation of Hospice Care lets researchers look at the relationship of length of stay, perceived timing of hospice referral, and quality of end-of-life care.
Additional research published in JPSM earlier this year found that hospice patients lived longer on average than patients who opted for more conventional care. Efforts to help patients, family caregivers, and other health care professionals understand the value of hospice care are needed.
The research team included Joan Teno and Janet Shu of The Warren Alpert Medical School of Brown University, Ramona Rhodes of Rhode Island Hospital, David Casarett of the University of Pennsylvania School of Medicine, and Carol Spence and Stephen Connor of the National Hospice and Palliative Care Organization. This research was funded by The Robert Wood Johnson Foundation and the Alzheimer’s Association.