Palliative care physician Richard Leiter, M.D., asks whether dying at home — the preference of most people in the United States — should always be the goal for patients at the end of life in a recent New York Times editorial. Leiter’s principal concern is the potential burden on family caregivers when a patient receives care and ultimately dies in the home.
About 80% of people in the United States say they would prefer to die in their homes, according to the U.S. Centers for Disease Control & Prevention. Honoring patient wishes and goals at the end of their lives is an integral component of hospice and palliative care providers’ missions.
As a palliative care physician at the Dana Farber Cancer Institute, Leiter is often personally involved in these critical conversations. Though he maintains that patient wishes should be honored, he questions in the editorial as to whether patients and families fully understand the complexities of that decision, as well as the growing trend among payers and health care providers to prevent hospitalizations at the end of life.
“In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members,” Leiter wrote in the editorial. “… Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with ourselves and our patients — about the difficult trade-offs these choices entail.”
The push among health care stakeholders to encourage home-based end-of-life care is driven by two factors, the genuine desire to honor patients’ preferences — and the substantial cost savings that result from avoiding hospitalization.
Palliative care in general can reduce health care costs by more than $4,000 per patient, according to a July 2017 study in Health Affairs. It can also reduce the frequency of 911 calls, emergency department visits, and unnecessary hospitalizations. A growing body of research indicates that hospice and palliative care reduces hospitalizations as well as hospital readmissions.
For Leiter, the priority is providing the patient and family with an honest assessment of what they would receive in each care setting available to them.
“Hospice care is excellent care for patients at the end of life, but by its nature it can’t provide everything,” Leiter told Hospice News. “It’s not set up to provide 24-hour care, and it’s important for families to know what their hospice can and can’t provide, so they are prepared and understand what that would look like.”
Leiter’s perspective comes not only from his experience as a physician, but his experience as a family member with a terminally-ill loved one. He recounts in the editorial his personal story of his grandmother passing away in the hospital after she became unresponsive in her apartment.
“When my uncle called to tell me what was going on, I was unsure of how to respond. My grandmother’s health and cognition had been declining over the past few months, but her quality of life was still good. In that moment, though, my clinical intuition was that she was dying,” he wrote. “As a palliative care physician, wasn’t it now my job to protect my grandmother from spending what could be her final hours in a hospital? On the other hand, without seeing her how could I be sure that whatever was happening could not be fixed?”
Though most hospice care is provided in patient homes, choosing to die in a hospital does not necessarily mean the patient cannot receive hospice care. According to the National Hospice and Palliative Care Organization, a small proportion of Medicare decedents receive hospice services as hospital inpatients.
Many hospices also partner with hospitals to provide care in their facilities, often in a floor or unit designated for hospice patients, but payers, including Medicare, often only allow inpatient hospice care — inside or outside of a hospital — if the patient’s symptoms are too severe to be managed in the home.