Good news on the hospice front. For the first time since the early 20th century, more Americans now die at home than in hospitals. From a report in the New England Journal of Medicine:
In 2003, a total of 905,874 deaths occurred in hospitals (39.7%), which decreased to 764,424 (29.8%) in 2017, whereas the number of deaths at nursing facilities decreased from 538,817 (23.6%) to 534,714 (20.8%). The number of deaths at home increased from 543,874 (23.8%) in 2003 to 788,757 (30.7%) in 2017, whereas the number of deaths at hospice facilities increased from 5395 (0.2%) to 212,652 (8.3%). These trends were seen across all disease groups.
This trend is beneficial. But more needs to be done.
A few years ago, the bioethicist Art Caplan and I — we usually disagree about bioethical issues — coauthored a piece in USA Today urging repeal of the “cruel choice” requiring hospice patients to forgo curative or life-extending treatment in order to qualify for hospice services. Dame Cecily Saunders — who almost single handedly created the modern hospice movement — once told me that is like telling people, “abandon hope, all ye who enter here.” Boy, was she right, and it explains not only why too few people access hospice care, but why so many are in the program for such a short time that they and their families don’t receive its full benefit.
Back to the study. The authors agree with Caplan and I and make a few other suggestions in The Statesman. Among their suggestions:
Only about half of Americans die while receiving hospice services, and home-based non-hospice palliative care is still in its infancy. We need a new movement, one that embraces the best of what hospice pioneers envisioned but that also adapts to the reality of modern health care and society.
Upgrade hospice…Eligibility criteria for hospice should be based on a patient’s needs, not inaccurate estimations of prognosis or the treatments she or he is willing to forgo.
Change the one-sized fits all approach. Current policies present barriers to wider hospice use for people with non-malignant condition, who may benefit from disease-directed therapies late in their disease course and whose prognosis is less predictable. Racial minorities have lower rates of hospice use, likely due to greater mistrust of the health care system, cultural beliefs and preferences, and greater desire for life-sustaining care regardless of prognosis…
Make quality end-of-life care available in all settings. When asked, most people say they would prefer to die at home, and hospice use increases the likelihood of this occurring. Yet a home death is neither preferable nor possible for everyone. It is good when preferences can be honored and people are able die in the place of their choosing. Yet the reality of serious illness and the capability for caregiving are complicated.
The authors conclude with a story of the kind I saw many times in my volunteer work for hospice and which my own parents experienced:
Hospice allows many people to experience what some refer to as a “good death” in their homes. The goal of our health system should be to ensure that all Americans have the ability to choose such an opportunity.
One such person was Mary who, in her late 90s, realized she was dying. Her daughter-in-law Nancy described her final moments. “She died on April 24, peacefully and painlessly, about an hour after her hospice aide, Marie, had given her a loving bed bath and shampoo, changed her sheets, and massaged her feet and hands with oil,” Mary wrote to us in an email. “Mary held out her hand to Marie and said ‘Thank you,’ snuggled down into her bed, and about an hour later was gone.”
Another way to boost the provision of hospice and expand palliative care opportunities for terminally ill and non-dying Americans alike would be for Congress to pass the Palliative Care and Hospice Education and Training Act. We shouldn’t let fear-mongering and inertia to maintain the failings of the current still-inadequate system.