Recommended: "Being Mortal"
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I unreservedly join the chorus of praise for noted surgeon's Dr. Atul Gawande's call for flexible, de-institutionalized, and more compassionate late-life care, from the time when a person needs help with the everyday tasks of living through to the days.
Though concerned with the US medical system, it's relevant to anyone who wishes to address that period with compassion and competence.
This is a subject we can uneasily avoid, and in fact I had it on my Kindle for months before I waded in—but I'm glad I did. Dr. Gawande doesn't sugar coat his pill, but neither he does default to the vague "something must be done" approach. He gives readers some tough love, tracing the lives of family members and patients who endured displacement, pointless and invasive procedures, and (worst of all to me) a disgraceful dearth of straight talk from the medical community.
Gawande contrasts these incidents with inspiring stories of unusual and innovative resources, from assisted living facilities alight with birds, dogs and visiting schoolchildren, to hospices where both physical and emotional comfort are freely supplied to give each patient "her best day possible, now."
Each of us can influence health policies and practices, through how we vote, the requests we make of health care professionals, and how we approach family decisions. But in order to raise our voice, lend a hand, or even hold a hand, we need to know what counts, as the bottom of life's hourglass fills. "Being Mortal" will be a book to which I return, and will inform many conversations.
Concurrently, I watched Dr. BJ Miller's TED talk (19 minutes), "What Really Happens at the End of Life", about how he and the staff of the the Zen Hospice of San Francisco care for their residents. Normally I can waste time on a makeup video for some goop I don't even wear; this really did change my life, and will likely change my dying. Please watch, to experience a realistic sensitivity that is both rare, and deeply needed.
Thanks to TED's generous policy, I am posting it here. I hope each of us, and our loved ones, can one day be helped by such lovingly radical caregivers.
Comments
LauraH: You may have seen the documentary "Dying at Grace" about the hospice at Grace Hospital in Toronto. Just wonderful; I was privileged to meet the staff there and was moved and impressed. (if not, it is here: http://www.veoh.com/watch/v362747183afaCMPm)
Private home care is expensive. My mother did it and warned us she would spare no expense; it made her happy and comfortable.
The Widow Badass: I only hope for that, and your mother sounds like a remarkable woman.
bomm: And why, we wonder, is it unspeakable? As a geriatric psychiatrist friend said, "Nearly every one of us wishes a gentle, loving end for our parents."
Miss FiFi: The death panel myth, an odious piece of misinformation, was concocted to fight universal health care, specifically, the extension of coverage to the uninsured. I thought I knew quite a bit about hospice care, but I learned much more from "Being Mortal".
I haven't seen the video yet - I've been quite busy today and am also a bit overloaded emotionally between Paris and the upcoming anniversary of the Polytechnique massacre (I was also writing a graduate history exam in a nearby building on campus there). Promise, I will.
I feel very strongly about the right to die, and think we can build safeguards against risks of abuse.
Just another perspective.
Just another perspective.
A "graceful exit" is not a premature exit. Gawande explains how palliative treatment can, when desired, be offered •in concert• with active treatment like specialized drugs- a "have it both ways" strategy. I hope you will read the book.
Because you use the term NHS, I assume you are in the UK, and I am in Canada; though we have universal health care systems, not all drugs or procedures are covered. In cases when a drug is not covered by the prescription formulary, or an experimental treatment, the cost can be staggering. In those cases, various things may happen: a philanthropic organization pays the bill, families pay privately, or raise funds.
Health care policy-making entails the balance of standard of care with cost; those decisions are made by a consortium, board, court or ethics committee. Such groups are not, despite their requirement to make complex decisions, "death panels", even when the effect of some choices is to delimit what is covered for terminal cases. The term is inaccurate, because such groups are not mandated with deciding whether individuals are worthy of care, as Sarah Palin tried to lead American voters to believe.
I find myself thinking more kindly of death now than I used to, and feeling more in my gut that it cannot be denied or avoided, that we might as well think about it and maybe there's something to be gained.
I think you do a service in posting this, but, of course, the book is still waiting for me, so I don't know for sure. On the nightstand. Almost as though I have to prepare myself...