(cross posted at freeforall)
Paula Span recently wrote about hospice as a shield against unwanted medical treatments that provided the space for an elderly Medicare beneficiary to get better. The irony is that the family she writes about had to choose the option associated with imminent death to be able to take their mother home and allow her to receive competent care that her adult children could trust; eventually, she was discharged alive from hospice. Work that I did with colleagues at Duke shows that around 15% of Medicare beneficiaries who begin hospice are discharged alive (85% of Medicare beneficiaries choosing hospice used such care continuously until their death, an average of 50 days later; median 15 days, Group 1 below).
Groups 2 (~10% of patients) and 3 (~5% of patients) were persons that entered hospice and were subsequently discharged alive from hospice; those in group 2 later died while not receiving hospice care, while those in group 3 re-entered and died while receiving hospice care (the study only looked at decedents).
The subset of patients who began receiving hospice but decided to stop doing so while they were still alive likely represent a variety of motivations: prognosis improved; had a bad experience with a hospice provider; wanted to try a therapy that a hospice felt they could not provide because it was not palliative in nature (motivation could run from financial to following the rules to ethical); no longer having a family member that was able to help them receive such care while at home; or wanting a home-based benefit that provided more care than could be obtained via the normal Medicare home health benefits. Some of these motivations could be viewed as strategic in the sense of a patient (and family) seeking care that didn’t fit neatly into the conception of what end of life care should look like as defined by the Medicare hospice benefit for the past 30 years. Our study could not delve deeply into the motivations and outcomes of the different patterns (especially quality of life and burden on family members). More information is needed to fully inform policy. However, this blog post and data such as that shown above are signals that the hospice benefit needs to be reformed and changed with patient needs and preferences at the fore.
What is most demoralizing, is that the hardest part of doing so are the insane politics surrounding death, hospice and palliative care that is surely the worst byproduct of the “debate” about the Affordable Care Act. One of the intangible reasons that we need some sort of deal on health reform to move ahead, regardless of what the SCOTUS says, is so that we can move health policy a bit off the back burner politically (stop laughing!) and allow some actual policy making to take place, focused on questions of outcome and cost, while realizing that we will all one day die–it is only a matter of when, and from what. And what care is available to us all before then.
No one wants to kill your grandmother….but she will die, and so will you and I.