What’s Going on with Dying in America?

One of the many vexing problems in U.S. health care is that patients repeatedly and by a wide margin express their preference for dying at home rather than in a hospital or other setting of care. However, despite that oft-expressed wish and the apparently increasing public awareness of hospice and palliative care options, most people still do not die at home. However, finally in 2011 the CDC published data that claimed an increase in people over 65 dying at home from 15% in 1989 to 24% in 2007.

Should this be cause for celebration? Apparently the answer is “maybe but maybe not”. Joan Teno and her colleagues who have tremendous experience in this area have now looked at, not only site of death, but the places of care leading up to death and the number of transitions in sites of care in the immediate pre-death period (Change in End-of-Life Care for Medicare Beneficiaries Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009 JAMA, February 6, 2013—Vol 309, No. 5). Their findings are not only ambiguous, but in part troubling.

Our results confirm the CDC finding based on death certificate data that more persons aged 65 years and older are dying at home, but the rate of ICU use in the last month of life has increased, with 29.2% of decedents experiencing an ICU in the last months of life in 2009. Another indicator of change in end-of-life medical care is that 11.5% of 2009 decedents had 3 or more hospitalizations in the last 90 days of life. Hospice use increased, but 28.4% of those decedents used a hospice for 3 days or less in 2009. About one-third of these short hospice stays were preceded by an ICU stay in the last month of life. Although a hospice stay of 1 day may be viewed as beneficial by a dying patient and family, an important yet unanswered research question is whether this pattern of care is consistent with patient preferences and improved quality of life.

So what this looks like is that, while people may be dying more often at home and less often in a hospital, this change does not translate into less aggressive care at the end of life. There seems to be a significant cohort of people who are eventually getting to hospice and dying there, but only after longer in an ICU and more back and forth between care settings than ever before. As Teno says, this one day of hospice may be seen by the patient and family as beneficial and gives the patient the chance to “die in peace”- not an insignificant outcome. And maybe this is what many people mean when they say in surveys that they want to die at home. Maybe they mean that they want to keep using aggressive care right up to the end and then go to hospice to die- although even in this scenario the rise in ICU use is hard to understand. If that is, in fact, the preference of these patients, that is fully consistent with modern palliative care practice.

However, this reality is a little hard to believe. Certainly there will be occasional people who will choose this course- but so many? My fear is that for some patients the medical team is holding off having real goals of care discussions until death is imminent. I hear complaints fairly frequently from palliative care teams and hospice teams that referrals come to them much later than they would prefer. Health care chaplains have long had the same lament. It will be interesting to see if the increasing penalties for readmissions and new regulations, such as in New York State, which require patients with less than six month to live be informed of the option for hospice and palliative care will make a difference.

Until then, is it good that more people are dying at home? Given the results repeatedly expressed in surveys, probably so. But Teno’s work reminds us that there is likely a lot more work to be done until we get to the point where every patient and family is included in their care planning from the beginning of their treatment process, all options for treatment and sites of care are explored, and the number of people who are at the end of life but still transitioning in and out of ICUs better aligns with what patients and families seems to be saying they want.

George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy

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