Home Health Care Refusals: Bridging the Communications Gap

Most health care providers would agree that acute care patients need a clear plan for appropriate follow-up care if they are to avoid readmission to the hospital. When the patient needs skilled nursing care or physical therapy at home, there may be a referral to a home health care agency. Even when the patient is eligible through Medicare or private insurance, however, the services may not happen. Patients can, and often do, refuse post-acute care services for a myriad of reasons that they may never discuss with their doctor, nurse, or the discharge planner.

The reasons to refuse in-home care are many: because patients are feeling well at the time of hospital discharge, they may think they don't need further care; or they fear a loss of autonomy and control; or they may not want a stranger in their home, or a stranger giving them orders, or a stranger judging how they live. They may be worried about the cost of in-home care, or figure that family members may be able to handle their care without help. Those family members may agree because they don't understand how much care is needed. Even if they would like some help and training, they may defer to the patient. Doctors and nurses may not push back because they are caught up in all the many other moving parts of a discharge.

Whatever the reason, the outcomes can be dismal, as patients who refuse follow-up services are at higher risk of being readmitted. Ways to bridge this divide were the topic of a December 7 roundtable on Home Health Care Refusals sponsored by the United Hospital Fund and the Alliance for Home Health Quality and Innovation, which funded the event. The roundtable brought together some 25 national leaders to explore what is known—and not known—about this rarely discussed issue.

(From left) Carol Levine, director of UHF's Families and Health Care Project, with roundtable speakers Suzanne Mitchell, Kathryn Bowles, Teresa Lee, of the Alliance for Home Health Quality, and Carol Rodat.
Kathryn Bowles, professor of nursing and vanAmeringen Chair in Nursing Excellence at the University of Pennsylvania and director of the Center for Home Care Policy and Research at the Visiting Nurse Service of New York, said that patients often lacked good information, or understanding, about the services available to them, and why they are needed. Her research at hospitals in New York City and Philadelphia found that refusers tend to be younger (average age 68 vs. 73 for those who accept services), more likely to be married, and privately insured, so feel they can manage without help (see graphic below).

UHF and the Alliance for Home Health Quality and Innovation will be working to find a way to bridge the communication gaps that are standing in the way. In 2014 the Alliance issued a report, Improving Care Transitions between Hospital and Home Health: A Home Health Model of Care Transitions, and UHF and the Alliance will release a report early in 2017 laying out the recommendations that emerged from the Roundtable discussion. Patients, family caregivers, and health care providers—all must be part of this continuing dialogue.

Characteristics of Home Health Care Refusers*
495 patients surveyed; 28% (139) refused post-acute care

Compared to patients who accepted services, refusers were:

- significantly younger (average age 68 vs. 73 years)
- more likely to be married (62% vs. 46%)
- privately insured (35% vs. 18%)
- at lower risk of mortality/severity of illness

​and had:

- shorter lengths of stay (4.8 days vs. 7.5 days)
- fewer unmet needs after discharge (0.83 vs. 0.73)

Refusers had:

- higher 30-day (21% vs. 16%) and 60-day (31% vs. 25%) readmission rates
- twice-higher odds of 30-day and 60-day readmission (after adjusting for quality of life, previous admissions, length of hospital stay, and problems and unmet needs after discharge).

* Topaz M, Y Kang, DE Holland, B Ohta, K Rickard, KH Bowles. June 2015. “Higher 30-day and 60-day readmissions among patients who refuse post-acute care services.” American Journal of Managed Care 21(6): 424-433.