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I want you to read Atul Gawande’s new book, Being Mortal! It won’t be easy. The first chapters – scenes from typical lives in typical nursing homes – are hard to take. But if it’s hard for us to read about what many elderly people experience these days, how hard must it be for them! We must at least read, to be witnesses to the largely preventable conditions that will push many into the clutches of euthanists.
‘Dignicide’ could hardly kill more dignity than our inhumane nursing home systems.
Gawande faces the current end-of-life scene with courage and honesty – as a doctor unafraid to reveal that the medical modeling is failing us.
You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions – nursing homes and intensive care units – where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.
He shares his own painful experience of his father’s death with a beautiful frankness that radiates the author’s own humanity, and helps us bear, through story, our own eventual demise.
Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.
Thankfully, Gawande gives us a glimpse of some innovations in eldercare that give real hope the future will bring positive changes for us all. My favorites were his re-telling of the Eden Alternative story (Dr. Bill Thomas flooded a nursing home with animals, real plants and children, literally bringing new life to his patients.) and the story of Peter Sanborn Place, where Jacquie Carson took management of a low-income housing unit to new heights in caring for her residents as they aged.
These and other examples of re-imagined eldercare were, Gawande says, “as different from one another as creatures in a zoo. They shared no particular shape or body parts. But the people who led them were all committed to a singular aim. They all believed that you didn’t need to sacrifice your autonomy just because you needed help in your life.”
That variety inspires me to believe we can all be of help in coming up with creative responses to the realities of aging and dying, rather than look for one-size-fits-all solutions to old people (as though their very life is a problem!).
Finally, Gawande’s thoughts on the role of palliative care, geriatric wisdom, and well-coached end-of-life conversations are clarion calls to us to get busy learning from specialists who may be a dying breed. They may become dinosaurs as, more and more, the elderly are simply cleared away so as not to demand our duty, or compel our humanity to serve them.
The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.
Know anyone who is going to die? Better read this book!