A growing number of older adults in the United States are dying at home, but many continue to face multiple health care transitions to different care sites and receive aggressive inpatient care in their final days, according to a study published in JAMA today.
The majority of individuals report that they would prefer to die at home rather than in a health care facility. There is also evidence suggesting that patients cared for in their homes at the end of life receive higher-quality care—particularly when hospice services are provided—and that such a setting may also ease grief and reduce trauma for loved ones. But most US adults die in some kind of institutional setting. To promote care that is more responsive to patient wishes, some advocates for quality improvement have proposed using the site of death as measure of the quality of care patients receive at the end of life.
However, the JAMA study, an analysis of Medicare data for more than 800 000 patients aged 66 years or older who died in 2000, 2005, or 2009, suggests a mixed picture of the state of end-of-life care. The study found that fewer individuals are dying in acute care hospitals than in the past (less than one-quarter died at home in 2009 compared with about a third in 2000) and that more are receiving hospice care (42.4% in 2009 compared with 32.3% in 2005 and 21.6% in 2000). But a growing number are receiving care in an intensive care unit in their last month of life (29.2% in 2009 compared with 24.3% in 2005), and individuals are facing more transitions between different care sites in their final 3 months (with an average of 3.1 transitions in 2009 compared with 2.1 in 2000).
Joan M. Teno, MD, lead author of the study and professor of health services, policy, and practice at Brown University Alpert Medical School in Providence, Rhode Island, discussed the findings with news@JAMA.
news@JAMA: Were you surprised that a growing number of patients are getting such aggressive care at the end of life?
Dr Teno: I would have hoped we would have made more striking improvements in care at the end of life. But what you pay for is what you get. There are financial incentives to provide more care in fee-for-service care. We don’t get paid to talk with patients about their goals or care or probable outcomes of care. We do pay for hospitalizations, and there are financial incentives for nursing homes to transfer patients back to acute care. We need to restructure how we pay hospital systems. I’m hopeful about the potential of bundling of Medicare payments through accountable care organizations.
news@JAMA: What does the study tell us about using the site of death as a quality indicator?
Dr Teno: Site of death is not enough to examine the quality of care at the end of life. We need to go beyond site of death and look at health care transitions.
news@JAMA: Why is the increase in number of health care transitions at the end of life concerning?
Dr Teno: It’s difficult on a dying patient and family. One transition that often occurs is from an acute care hospital to a nursing home. When that happens, the nursing home has to represcribe all the patient’s medications. There is often a delay in getting medicine to the patient. Patients may not get effective palliative care when you move them, especially in the last 3 days of life.
news@JAMA: What does your study tell us about the role hospice is playing in end-of-life care?
Dr Teno: For many patients, it’s an add-on to aggressive care. More than 28% of the patients were in hospice care for less than 3 days. Of those patients referred to hospice late, more than 40% were hospitalized and spent time in the intensive care unit prior to referral. We need to talk with patients about goals of care. I think we can reduce the pattern of transfer from the intensive care unit to hospice in the last 3 days of life.
news@JAMA: What advice do you have for clinicians working with patients at the end of life?
Dr Teno: Communication needs to be ongoing with the family. Don’t wait until a patient is actively dying to refer to hospice. You can get a palliative care consultation and talk with patients about their goals for care early on. There was an article on palliative care for patients with lung cancer that found that not only did it improve quality of care, patients lived longer.
We assume more care is better, but it is not true. We have to thoughtfully navigate care at the end of life to give the right care at the right time and in the right location. That way we are honoring the patient’s right to choose.