A Perspective article from The New England Journal of Medicine — Days Spent at Home — A Patient-Centered Goal and Outcome
This study suggests we should consider days at home as a quality measure rather then readmissions.
Post measures of the quality of health care delivery focus on what health care providers do, not what patients want. If “high-value, patient-centered care” is to be more than rhetoric, health care organizations need to measure outcomes that matter to patients.
To understand how this approach differs from business as usual, consider “days spent at home in the last 6 months of life.” Mean Number of Days Spent at Home in the Last 6 Months of Life, by Hospital Referral Region, for Medicare Beneficiaries Who Died in 2012 or 2013. shows the mean number of days spent at home by Medicare beneficiaries who died in 2012 or 2013, by hospital referral region (HRR). HRRs are regional health care markets as defined on the basis of historical hospital-usage patterns. “Days at home” was calculated as 180 days minus the number of inpatient days in an acute care facility, an inpatient rehabilitation facility, a skilled nursing facility, or an inpatient hospice unit.
As the map suggests, there is substantial variation in the amount of time dying patients in the United States spend at home. The mean was just 120 (of 180) days in Los Angeles and Miami and 122 in McAllen, Texas, and Chicago. In Mason City, Iowa, dying patients spent an average of 146 days at home. In Grand Junction, Colorado, the average was 143; in Rochester, Minnesota, 142. (A Supplementary Appendix providing the mean number of days for each HRR is available at NEJM.org.)
Reducing hospital-readmission rates is a laudable goal, but not exactly the same thing as trying to maximize the amount of time that frail and dying patients spend at home. Do a few more weeks at home in the last 6 months of life matter? After all, the ultimate clinical outcome was the same, since all the patients included in the analysis died. Furthermore, there are many patients who prefer not to be at home when they are sick and dying, and for whom days spent at home are days during which they have less-than-complete relief of discomfort.
Being home at the end of one’s life will never be a universal goal, but our experience and academic research suggest that, all else being equal, patients would rather be at home than in health care facilities. When surveyed about their preferences for dealing with a terminal illness, most people (86%) indicated that they would prefer to be at home in their final days. In addition, they would not want to be on a ventilator in order to gain an extra week of life, and they are not opposed to drugs that could improve symptoms but potentially shorten life. These preferences are highly consistent across regions of the country and people’s socioeconomic status.1 Despite this consistency in end-of-life preferences, there is wide regional variation in the intensity of, expenditures on, and locations of care provided during the last 6 months of life.2
Our interest in “days at home” as an outcome measure was stimulated by a comment from one person — a family member of a patient with a disabling condition, who described his emotions as he and the patient entered the front door of their home after a 6-week hospitalization. “Just to see familiar photos on the wall made us feel like we could breathe again,” he said. Like many patients and families, they wanted to maximize the number of days the patient could be at home.
A similar message emerged from focus groups conducted by the Camden Clinical Commissioning Group (CCG) in the United Kingdom, which asked frail elderly patients and their caregivers, “What is most important to you?” The priority that emerged was “time spent at home,” and when the CCG group decided to organize its clinical and community resources around that single clear goal, the results included lower use of hospitals and emergency departments, better patient experience, and higher clinician morale.3
An important message from the Camden CCG experience and from deeper analyses of Medicare data on days at home is that there is a difference between doing more activities that make good sense and organizing around a goal. One might expect that greater use of home health and hospice services would correlate with more days at home, but as the graph Relationship between Number of Days with Home Health or Home Hospice Services in the Last 6 Months of Life and Total Number of Days Spent at Home in Those 6 Months. shows, the opposite is true. In regions where patients had more days on which they received home health services, hospice services, or both, they spent fewer total days at home (correlation coefficient, –0.53).