• The challenges of death

    Atul Gawande deserves every bit of praise he receives for shining the spotlight on the ways in which our health system fails us. His latest masterpiece is on the tragic, over-medicalized manner in which some approach and experience death, often without deliberately choosing such a path.

    I’m not a physician and I’ve not yet experienced the loss of a close loved one. So I cannot speak with authority about how our health care system and its high medical intensity culture treat patients at the end of life. The best I can do is to try to put myself in the shoes of others who see up close the results of the system and that culture. I’m grateful that people like Gawande exist, accomplished practitioners who are also skilled writers. Another is Aaron Carroll, who reacted to Gawande’s article with his own end-of-life story. It’s worth a read and packs an important message into a blog-length post.

    What I can say with authority is this: I want better choices, as a person, a patient, a premium-paying policyholder, and taxpayer. I want everyone to enter the final stage of life well aware of the possibilities, having thought through how they’d like things to end. It could be the case that facilitating just that might save us all some money. But even if it costs more, I want it. You only die once. Your loved ones each only dies once. It matters how that threshold is crossed, and I do not wish anyone to stumble across it in a manner they or their family later regrets.

    Politics aside (death panels, and all that), getting from here to there will not be easy. In a Health Affairs blog post, Duke Public Policy and Medical Center researchers Don Taylor and Amy Abernethy caution that changing end of life care in ways that increase quality and satisfaction is challenging.

    The last 30 years have seen a cultural and professional dialogue about tradeoffs between expenditures and quality of life, leading to a general agreement that sometimes doing everything that is medically possible is not the best course, and that perhaps one could prolong a person’s life in a medical condition that could be understood as being “worse than death.”  However, acknowledging that this state is conceptually possible is not the same thing as being able to identify such a state in the midst of the emotional intensity of a family losing a loved one, and leading them to alter their health care decisions prospectively.

    Agreed. And that’s why we need to keep talking about this, as Gawande and Carroll, and others have done and, I hope, will continue to do. I also hope we can take the politics out of this issue. It’s too important.

    (PS: For those who desire deeper reading on Medicare hospice policy, Don Taylor, quoted above, has thought long and hard about it and  recommends some changes in a post on his blog.)

    • In all of the discussions I have ever had with people in the medical field, I have never heard anyone say that they want to die the way so many of our patients die, intubated with tubes everywhere. IOW, those of us who know what it is really like, dont want it. So, when threats of death panels were used for partisan political purposes, it pissed off a lot of us in the trade. There was plenty in the ACA to criticize. Even many of its supporters have doubts or think it barely comes out positive in the cost/benefit analysis. But, to use this vulnerable population in this manner was cynicism of the highest order, or so it certainly seems to me.


    • Four years ago, my father was diagnosed with end-stage dementia. He was mostly unable to move and unable to speak except for a few words, had had dementia for several years prior. He could still eat pureed food if fed by hand, although we were warned that wouldn’t last long. He entered hospice and they were a blessing, made his life bearable, if dementia can be said to be bearable.

      He is still alive, still trapped in that horrible netherworld. Last summer I visited him (I live 3000 miles away) and he managed a word. “Kill.” (Later he managed another couple words, “Beep beep,” so who knows if he meant it the first time.) He lies there screaming sometimes; we assume he’s in pain since his BP skyrockets, but can’t always figure out what’s wrong.

      We don’t know whether the nursing home jumped the gun back then, whether he wasn’t really eligible for hospice. Who could tell?

      Dad’s on no feeding tube (he left instructions as far as that went), doesn’t need a ventilator. He still gets hospice care, but my sister and I hold our breaths every few months when cases are discussed. Will this be the time they decide he’s no longer eligible? When will Medicare refuse to pay? What will we do then?

      He and Mom left very clear instructions for end of life care, since they had cared for my grandfather, who had Alzheimer’s. But in amongst the DNR order, the”no feeding tube” wishes, they somehow left out the possibility that someone could stabilize at the absolute end of end-stage dementia. Dementia is really uncharted country when it comes to end-of-life care.