The July issue of Health Affairs explores topics related to advanced illness and end-of-life care. Often when needs are as much social and spiritual as they are medical, people are confronted with a fragmented, rescue-driven health care system that produces miraculous results but also disastrous failures.

The July issue of Health Affairs was supported by the Gordon and Betty Moore Foundation.

Medical spending in last year of life is lower than previously reported

Shedding new light on end-of-life medical spending, data from eight countries and the Canadian province of Quebec suggest that high costs associated with the final year of life make up only a modest share of aggregate spending. An international team led by Eric French of University College London and the Institute for Fiscal Studies in the United Kingdom measured the magnitude of medical spending in the last 12 months and last three years of life. The authors found that 8.5–11.2 percent of overall spending took place in those in last 12 months — significantly less than spending on those in the final three years of life, which accounted for, on average, 24.5 percent of overall costs. Hospital spending is more concentrated at the end of life, accounting for 44.2 percent of medical care spending in the last year of life in the US, compared to 36.3 percent, on average, over the last three years of life (see the exhibit above). While some terminal illnesses generate short periods of concentrated expenditure, the authors conclude that the majority of costs are the culmination of care for chronic conditions, which are associated with shorter life expectancies.

One-third of Americans complete advance directives for their end-of-life care

Advance care directives are the primary tool for people to use in communicating their wishes regarding end-of-life care in the event they become incapacitated. However, a study led by Kuldeep Yadav of the Perelman School of Medicine at the University of Pennsylvania and coauthors found that among more than 795,000 Americans, 36.7 percent had completed some form of directive. Only 29.3 percent had completed a living will that contains actual care wishes, and 33.4 percent had designated a health care power of attorney. Completion of advance directives was nominally higher among patients with chronic illnesses than healthy adults, and was significantly higher among patients ages 65 and older (45.6 percent) compared with their younger counterparts (31.6 percent). Of note, the authors found no evidence that rates of advance directive completion have changed in recent years. Because written directives remain a key component of high-quality advance care planning, the authors call for policies that facilitate advance directive completion, especially among patients who are at high risk for critical illness and death.

Black and Hispanic patients typically receive care from poorer-quality hospices

Enrollment in hospice care has grown substantially since 2000 for all racial and ethnic groups. However, little is known about variation in hospice patient care experiences by race or ethnicity. Rebecca Anhang Price of the RAND Corporation and coauthors reviewed nearly 300,000 responses from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, which quantifies caregiver feedback on timeliness of care, respectful treatment of the patient, getting help for symptoms, and more. They found that black and Hispanic patients were more likely to have received care from poorer quality hospices, and that black and Hispanic patients were less likely to have received the right amount of emotional and religious support. As more black and Hispanic patients enroll in hospice care, the authors note that it is critical to ensure these patients have access to high-quality, culturally competent hospice services.

End-of-life caregivers provide nearly two times more assistance per week than other caregivers

In 2011, 2.3 million caregivers in the US supported 900,000 older adults in their last year of life. The vast majority of caregivers were unpaid family or friends. Katherine Ornstein of the Icahn School of Medicine at Mount Sinai and coauthors used the National Health and Aging Trends Study and its linked National Study of Caregiving to find that older adults at the end of life received almost twice as many hours of help per week: 61.3 hours versus 35.5 hours for older adults not at the end of life. Compared to other caregivers, end-of-life caregivers were significantly more likely to report physical difficulty related to giving care (35 percent versus 21 percent) and having no time for themselves (51 percent versus 40 percent). For end-of-life caregivers who were spouses, nearly two-thirds reported that they receive no support from family or friends. To meet the increasing need for end-of-life care as the population ages, the authors say that unpaid family caregivers must receive expanded access to supportive services and greater recognition.

Also of interest: