New research published in the Journal of the American Medical Association raises more questions about patterns in end-of-life care than it answers. Nine researchers teamed up to explore data from Medicare beneficiaries in an attempt to describe changes occurring between 2000 and 2009 in three important areas for those who are terminally ill: site of death, place of care during the last months of life, and number of transitions between healthcare facilities at the end of life.
Acknowledging prior studies had demonstrated an increase in the number of people dying at home and an increase in hospice usage, the researchers asked the (somewhat) rhetorical question, “Is this evidence of the success of hospice- and hospital-based palliative care teams?” Their findings suggest the answer might be “maybe” or “maybe not”—a not-so-resoundingly affirmative response to an important question.
The researchers explored information contained in a complex Medicare database, looking at records from more than 800,000 Medicare beneficiaries who died in 2000, 2005 or 2009. Data represent a random sample of those 66 or older who had a diagnosis of cancer, COPD or dementia in the last six months of their lives.
So, what were their findings?
- Between 2000 and 2009, the number of Medicare beneficiaries dying at home increased;
- The number of deaths in acute care hospitals decreased; and
- Hospice use at time of death increased.
- The number of individuals placed on mechanical ventilation increased;
- The number of individuals experiencing a transition between healthcare facilities in the last three days of life increased;
- Intensive care usage during the last month of life increased; and
- The number of short stays in hospice increased between 2000 and 2009, suggesting the referral to hospice comes later in the terminal illness, rather than sooner.
In short, a greater percentage of individuals are dying at home and using hospice, while at the same time, more terminally ill individuals are experiencing extraordinary and heroic measures at the end of life. The hospice movement hasn’t necessarily led to a reduction in the use of treatment-focused healthcare services at end of life.
This publication made national healthcare news last week, and there was widespread discussion about these findings. I spent some time examining the numbers over the weekend, because I was curious about the story behind them. Two themes stood out.
The researchers suggest an interesting phenomenon: hospice might be becoming one component of healthcare usage at end of life, an “add-on” service to the current treatment-focused model. If so, this pattern may prove troubling, as hospice services more appropriately offer patients a different model of care—palliation and comfort. Patients potentially miss out on the full benefits of hospice care if it’s envisioned as an add-on to curative treatment, rather than a self-standing medical paradigm.
In addition to this idea of shoehorning hospice into a treatment model, I sense there’s missing information in the research: what did the patients want? Did they want to die at home? Did they want to be on a ventilator? Did they want to be in intensive care and moved to a different facility in the last few days of their lives? In hindsight, it might seem obvious that the answer would be no, they didn’t want to be moved hours before they died; but, these are complex questions. It might not have been obvious to the patients that death was imminent; they may have made different choices had they known.
I’d love to see two or three or more studies about this topic, so we can have a better understanding of trends in end-of-life care. Like many others, I know personally about the impact and importance of quality hospice care, and I don’t believe it should become any sort of add-on to an aggressive treatment modality. Furthermore, with broad nationwide efforts in place to ensure patients have a say in the care they receive, I’d like to see more studies describing the way in which patients direct their own care at the end of life, especially in their final days.
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