Showing posts with label atul gawande. Show all posts
Showing posts with label atul gawande. Show all posts

Tuesday, August 22, 2017

Great Advice on Aging&ElderCare in Books !!!!!!!!!



New York Times, August 19, 2017, Page B1 :


Your Money

Hard-Won Advice in Books on Aging and Elder Care

Your Money
By RON LIEBER
Loretta Anne Woodward Veney with her mother, Doris Woodward. Ms. Veney’s upbeat memoir, “Being My Mom’s Mom,” describes the years she has spent caring for her mother. Alex Wroblewski for The New York Times
Longevity is generally better than its alternative. But when the body or especially the mind wears out, caring for yourself or finding someone else to do it for you can impoverish you in short order.
We fail to plan for it at our peril. So when it seemed that Republicans in Washington were close to passing legislation that could fundamentally change Medicaid, I wrote five straight columns about the program. Already, the majority of Americans need Medicaid to pay for at least some of their nursing home costs or care at home because they’ve run out of money. Proposed caps on Medicaid, which have not come to pass for now, had the potential to cause enormous problems.
In the wake of those articles, you wrote in, hundreds of you, with harrowing stories and hard-won advice, more of which I intend to present in future columns. But a smaller number of people wrote in unprompted to assign me homework — books that they found useful as they were navigating their own changing conditions or those of spouses, close friends or other family members.
This week, I read all four books that came up at least twice in your correspondence. I don’t recommend you do the same, for if you’re more empathetic than average or prone to anxiety, you’ll finish the reading sprint, as I did, emotionally wrung out and worried sick.
Still, these books are all in their own way utterly essential reading. Few of us are prepared for the financial and emotional complexities of managing the last several years of our lives. But as we live longer, drain what may prove to be inadequate retirement savings and lean harder on already strained government programs, we’ll probably find ourselves facing ever more challenging questions and unfortunate compromises.

We may as well know what’s coming. Here’s what I learned.

“Being Mortal,” by Atul Gawande

I started here, with this book by a New Yorker writer and physician who aims to help readers avoid what he calls a “warehoused oblivion,” even if none of us will win the ultimate battle.
The book is a good introductory text in part because of the sobering statistics. By age 85, 40 percent of people have some form of dementia. There are 350,000 falls each year that lead to broken hips. Once you’ve got a fracture there, there’s a 40 percent chance you’ll end up in a nursing home and a 20 percent chance you’ll never walk again.
A good geriatrician, one hopes, will school you in stability to lessen the chance of taking a spill. But good luck finding one, since their numbers have declined even as studies show that people do better over all under their care. Think your family will be there to steady you or at least check in? According to Dr. Gawande, half of the very old among us live without a spouse, and we’re having fewer children than ever before.
He writes movingly of his own father’s death, and I felt the lump rising in my throat five times over 263 pages. But it is the chapter titled “Letting Go” that I found most useful. There, he discusses the powerful effect of frequent, concerted conversations about goals and wishes at the end of life — not just bland, advanced medical directives in writing but continuing talks out loud.
“It is not death that the very old tell me they fear,” he writes. “It is what happens short of death.” But we don’t think about it enough, and we talk about it even less. Having read this book, I won’t make that mistake or let anyone close to me make it either.

“The 36-Hour Day,” by Nancy L. Mace and Peter V. Rabins

The title is a sympathetic nod to what it feels like to care for someone with Alzheimer’s, other dementias or memory loss, and it could take nearly that long to read this book and absorb.
Still, its value is in its encyclopedic nature, including detours into necessary but often uncomfortable topics like adult diapering and masturbation. These authors have clearly heard and seen it all.
The tips in Chapter 16 for people shopping for long-term care residences of various sorts are particularly comprehensive. You’ll finish thinking that this is a selection process that shouldn’t happen within 24 hours of a hospital discharge but should instead unfold over weeks, and you’ll be right.

“A Bittersweet Season,” by Jane Gross

The reward for living a reasonably long life, according to Jane Gross’s mother, was getting to “rot to death” rather than merely dying. As a physician Ms. Gross quotes later in her book confirms, this “inching toward oblivion” is no longer bad luck but a “generalizable phenomenon.”
With that bit of foreboding as a baseline, Ms. Gross takes us on a no-holds-barred tour through the years that she and her brother spent caring for their late mother. The author, a former New York Times reporter whom I’ve never met save for a few encounters on social media, is unafraid to admit all the mistakes she made out of sheer ignorance and how often even the most high-functioning adult children simply do not know what they do not know.
The book explains the financial side of her mother’s care — including her eventual qualification for Medicaid — plain as day. I also picked up even more tips for a list I’ll eventually publish of questions to ask before picking a nursing home or assisted living facility.
As someone with a sister and two sisters-in-law, I found the book most useful as a sort of post-mortem meditation on gender. Women often lose out twice or more in the aging derby, first when they take on disproportionate responsibility for their aging parents and then again when they outlive their spouses in old age. Ms. Gross’s raw honesty about her feelings about all of this — often fair and sometimes not, by her own admission — makes this book mandatory reading for any man with a sister who wants to be thoughtful about planning for aging parents.

“Being My Mom’s Mom,” by Loretta Anne Woodward Veney

There is no sugarcoating the number of physical and emotional challenges that come with aging, so it’s clear why Ms. Veney’s upbeat memoir of the years she has spent caring for her mother, Doris Woodward, who has dementia, is so appealing.
Ms. Veney’s steadfast focus on her own mental health is something others will want to mimic. Her aim is tranquillity and patience, with an emphasis on reprogramming her reactions, like her frustration with being late.
She’s also practical about doing whatever works to make her mother happy. While Ms. Woodward had no taste for McDonald’s in her younger years, she found it soothing for whatever reason once her decline began. Often, the two of them would stay there for hours.
Finally, Ms. Veney devotes a chapter to humor. Laughing with someone afflicted with dementia can, in her view, be life-affirming in a period when joy may be elusive. So we hear of her mother’s confusion over her new memory foam slippers. How was something on her feet going to help her brain? she wondered.
Ms. Veney and Ms. Woodward in Fort Washington, Md. Alex Wroblewski for The New York Times
At the end of one particularly challenging day out, the pair stopped for dessert. When they arrived back at her mother’s group home where she had lived for more than a year, she did not recognize it though she did thank her daughter for the treat. “I just don’t remember where I live,” Ms. Woodward told her daughter. “But of course I remember the ice cream.”

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A version of this article appears in print on August 19, 2017, on Page B1 of the New York edition with the headline: Facing Dread Of ‘Inching Toward Oblivion’.
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Friday, April 28, 2017

How To Have A Better Death-ECONOMIST mag. Cover Story




The Economist     cover story   April 29  2017 :


End-of-life care  How to have a better death

Death is inevitable. A bad death is not

Print edition | Leaders

IN 1662 a London haberdasher with an eye for numbers published the first quantitative account of death. John Graunt tallied causes such as “the King’s Evil”, a tubercular disease believed to be cured by the monarch’s touch. Others seem uncanny, even poetic. In 1632, 15 Londoners “made away themselves”, 11 died of “grief” and a pair fell to “lethargy”.
Graunt’s book is a glimpse of the suddenness and terror of death before modern medicine. It came early, too: until the 20th century the average human lived about as long as a chimpanzee. Today science and economic growth mean that no land mammal lives longer. Yet an unintended consequence has been to turn dying into a medical experience.

How, when and where death happens has changed over the past century. As late as 1990 half of deaths worldwide were caused by chronic diseases; in 2015 the share was two-thirds. Most deaths in rich countries follow years of uneven deterioration. Roughly two-thirds happen in a hospital or nursing home. They often come after a crescendo of desperate treatment. Nearly a third of Americans who die after 65 will have spent time in an intensive-care unit in their final three months of life. Almost a fifth undergo surgery in their last month.
Such zealous intervention can be agonising for all concerned (see article). Cancer patients who die in hospital typically experience more pain, stress and depression than similar patients who die in a hospice or at home. Their families are more likely to argue with doctors and each other, to suffer from post-traumatic stress disorder and to feel prolonged grief.
What matters
Most important, these medicalised deaths do not seem to be what people want. Polls, including one carried out in four large countries by the Kaiser Family Foundation, an American think-tank, and The Economist, find that most people in good health hope that, when the time comes, they will die at home. And few, when asked about their hopes for their final days, say that their priority is to live as long as possible. Rather, they want to die free from pain, at peace, and surrounded by loved ones for whom they are not a burden.
Some deaths are unavoidably miserable. Not everyone will be in a condition to toast death’s imminence with champagne, as Anton Chekhov did. What people say they will want while they are well may change as the end nears (one reason why doctors are sceptical about the instructions set out in “living wills”). Dying at home is less appealing if all the medical kit is at the hospital. A treatment that is unbearable in the imagination can seem like the lesser of two evils when the alternative is death. Some patients will want to fight until all hope is lost.
But too often patients receive drastic treatment in spite of their dying wishes—by default, when doctors do “everything possible”, as they have been trained to, without talking through people’s preferences or ensuring that the prognosis is clearly understood. Just a third of American patients with terminal cancer are asked about their goals at the end of life, for example whether they wish to attend a special event, such as a grandchild’s wedding, even if that means leaving hospital and risking an earlier death. In many other countries, the share is even lower. Most oncologists, who see a lot of dying patients, say that they have never been taught how to talk to them.
This newspaper has called for the legalisation of doctor-assisted dying, so that mentally fit, terminally ill patients can be helped to end their lives if that is their wish. But the right to die is just one part of better care at the end of life. The evidence suggests that most people want this option, but that few would, in the end, choose to exercise it. To give people the death they say they want, medicine should take some simple steps.
More palliative care is needed. This neglected branch of medicine deals with the relief of pain and other symptoms, such as breathlessness, as well as counselling for the terminally ill. Until recently it was often dismissed as barely medicine at all: mere tea and sympathy when all hope has gone. Even in Britain, where the hospice movement began, access to palliative care is patchy. Recent studies have shown how wrongheaded that is. Providing it earlier in the course of advanced cancer alongside the usual treatments turns out not only to reduce suffering, but to prolong life, too.
Most doctors enter medicine to help people delay death, not to talk about its inevitability. But talk they must. A good start would be the wider use of the “Serious Illness Conversation Guide” drawn up by Atul Gawande, a surgeon and author. It is a short questionnaire designed to find out what terminally ill patients know about their condition and to understand what their goals are as the end nears. Early research suggests it encourages more, earlier conversations and reduces suffering.
These changes should be part of a broad shift in the way health-care systems deal with serious illness. Much care for the chronically ill needs to move out of hospitals altogether. That would mean some health-care funding being diverted to social support. The financial incentives for doctors and hospitals need to change, too. They are typically paid by insurers and governments to do things to patients, not to try to prevent disease or to make patients comfortable. Medicare, America’s public health scheme for the over-65s, has recently started paying doctors for in-depth conversations with terminally ill patients; other national health-care systems, and insurers, should follow. Cost is not an obstacle, since informed, engaged patients will be less likely to want pointless procedures. Fewer doctors may be sued, as poor communication is a common theme in malpractice claims.
One last thing before I go
Most people feel dread when they contemplate their mortality. As death has been hidden away in hospitals and nursing homes, it has become less familiar and harder to talk about. Politicians are scared to bring up end-of-life care in case they are accused of setting up “death panels”. But honest and open conversations with the dying should be as much a part of modern medicine as prescribing drugs or fixing broken bones. A better death means a better life, right until the end.
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End-of-life care

How to have a better death

Death is inevitable. A bad death is not

Readers' comments

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mrvitamin
Aubrey de Grey of SENS should be taken seriously. He approaches ageing as a problem rather than a given. Roy Walford compared modern biology to the Russian advance on the whole of the Eastern Front. Who is to say that science will not ameliorate one or more of the facets of ageing identified by de Grey? Currently, the only reasonably certain technique for serious life extension is CRON (Calorie Restriction Optimal Nutrition). deGrey's sidekick, Michael Rae, was an active participant in the CRON society for several years and, I expect, remains a devoted CRON practitioner. He aims to extend his life with CRON long enough to benefit from scientific progress along de Grey's direction. Why not? Of course, Walford thought that he, too might be able to last long enough for new science. Unfortunately, the current state of science could not cure his ALS and he died at 80.
Perrodin
If you see doctors too often, they may find something that "needs treatment".
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I started having an annual check-up after my husband died*. I did so for 10 years, then I quit while I was ahead. Now, at over 82, I am old enough to die; eventually, we all do so why bother with checkups?
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[* If you visit a cemetery, you may notice that married people often die within two years of each other. I was sure I was going to die. I did not die after all, and started gardening instead.]
Are you really old enough to die?The average life span for both men and women is increasing and in places like Japan the nappies for adults now outsell nappies for kids. In my workplace as a medic I meet lots of so called "old people" in their 80s and 90s. They do not come to hospital to die, but come to us so that they may live. One person's truth is another's fallacy. We are all individuals with our unique perspective in life. Even in terminal conditions people prefer to think of life rather than death.
How long should you live, how should you live and finally how and when to die is very personal.
guest-ajnllwom
A very interesting article. What is needed is for medical and other staff to receive training that there comes a time when they should stop striving to keep patients alive and instead strive to allow patients an easeful and peaceful death. I recommend "Easeful Death" by Mary Warnock and Elisabeth Macdonald (OUP) for anyone wanting a careful and thoughtful discussion of the issues.
Sempervirens
Not to get all druggie, but psilocybin mushrooms have been shown to lessen the anxiety for those about to exit.
Also, sky burial is an idea whose time has come. Let the vultures and condors feast!
jhoughton1
Atul Gawande's "Being Mortal" is a must read for anyone who thinks they or their loved ones might some day....die. It's far from depressing and full of good ideas for individuals and societies.
guest-ajoonsww
I was diagnosed with ALS and told I had 18 to 24 months to live. That was eight years ago, so like most sports, I'm in sudden death overtime. I'm currently non-ambulatory and speechless; I have no intention of devolving to the vegetable state. I will pull my plug before cabbage-hood. My advice to anyone that will listen is don't ignore the fact that unless you get hit by a bus, YOU WILL GET FRAIL! So plan for that frail part of your life. Be where religious fanatics can't force their belief on you. Be where your comfort is respected. Frailty is coming, plan for it!
dmarriott
The most important matter that has to be determined is what the dying person wants to happen, but with great care to understand the meaning of the words spoken. This is the art of palliative care when well administered, as well as the curse of palliative care when it is ignored. Your article refers to the need for an expansion of palliative care, but there is a marked difference between palliative care where the dying person wishes are understood and respected, and the 'palliative euthanasia' which can be prescribed: 'What is it that you are afraid of?' 'I don't want to have great pain - it scares me.' 'Oh, well we can take care of that for you: so what you want is to have a peaceful death' 'Well, yes doctor.'
The orders are written, the injection prepared, and the injection given. The dying person falls asleep, so deeply that he/she doesn't wake up for meals, and is sound asleep so never drinks from the glass of water by the bedside.
Unless there is an advocate for that individual, they will die: the advocate works in cooperation with the physicians and nurses to ensure that for the devout Christian believer, the tenets of that faith are respected, for that individual, it must be remembered, this earthly life is but part of life, and the end of life is the time when it is believed that as one life ends, a spiritual journey which we do not understand commences. An Anglican Catholic Priest.
gsSmPNfvjq
Being anaesthesiologist and resuscitator (that's the italian word for intensivist) my experience is that we prolong and expansivefully ( neologism) the death process.
The pope John Paul II° was tracheostomised 7 days before dying by Parkinson disease , setting the standard that it is better to survive miserably than rendering the soul to "God" peacefully ( not a neologism).
My educated guess is they had not made their mind up about his successor jet.
Better suggestions?
ukrmssy
I read Atul Gawande's book, _Being Mortal_, last year and it has been vital in helping my father navigate the last months of his life as he experiences all that end-stage COPD from 58 years of smoking entails. It has not been easy, but he is at home, under hospice care, and has everything in place to ensure that his priorities and wishes are clear to all of us. Dr. Gawande made a very good case for understanding how to help an ill or elderly person live the way they want to all the way to the of their life. Thank you for highlighting this issue.
guest-ajnlinme
In Colombia, health system is moving to use an intensive improved health tecnologies even when it doesn't have enough financial resources to fund it. Patient and his/her family claim for that.."doing more". How health systems can guide "medicine" to help people to have a better death instead of keeping people alive not matters what implies?
Death is substantially removed from contemporary culture and capitalism world since as inevitable fact and life unique attractive fixed point it could set up a different look and perspective. Hence, death reflects deprived life and actually quality life should be meaningful and qualify death itself as last moment only. Life expectation varies and will vary even more according to social class of belonging and income. Trying to buy more life with more advanced health technologies appears t be a normal desire and market oriented perspective.
tjfob
I deliver medicines to assisted-living facilities...to see some of the poor souls that are "existing" there is really sad...now, some may have expressed a desire to stay alive by all means possible, then so be it....but I wonder how many have fallen into the gray category of having made no decision and thus are being kept alive by machines and drugs...ideally, everyone should make an end-of-life decision, but when they haven't and the inevitable is nigh then the relatives and the medical community must make prudent decisions...
guest-ajammnjs
Move to Belgium?
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The right to die in Belgium: An inside look at the world’s most liberal euthanasia law
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"Belgium has the world’s most liberal law on physician-assisted suicide, which is not just for the terminally ill. Patients with psychiatric conditions – and now, even children – can request euthanasia."
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MEGAN THOMPSON: As she opens the door to her home…this 34-year old Belgian woman known as “Eva” seems at ease. But actually she’s chronically depressed. More than once she’s tried to commit suicide. And now she’s asking doctors to help her. Help her die by euthanasia…all of it captured in a Belgian documentary.
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http://www.pbs.org/newshour/bb/right-die-belgium-inside-worlds-liberal-e...
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I didn't care much for Youth In Asia.
(a British punk band)
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NSFTL
Regards
guest-ajnliwsn
Death is not inevitable.
The body is a mechanism; incredibly complex to be sure, but sooner or later it will be understood. The reversing of aging in humans *is* going to occur. The only question is whether or not it occurs in our lifetime.
In general, this assertation evokes rejection. I may be wrong, but I think this is because we are all resigned to death, and the proposal - as yet without any real justification - that it might not be so has the effect of bouncing us out of our settled and endurable resignation into a half-way state where we now *might* have the chance of avoiding death - but might not! an uncomfortable position, and one which we most most easily avoid by rejecting the original proposition.
Consider. Imagine I had proposed that mice would eventually be bred who live twice as long. Well, that doesn't cause an emotional reaction, I would say (and in fact, it has been done). Now imagine I might say we would work out how to solve the aging of skin in humans - we all still die at the same time, but at least we dont' wrinkle up :-) that would be remarkable, but again - it does not evoke rejection. Now finally imagine I say that if the solution to skin aging actually solves a whole class of aging in humans, and as a result we will live an extra twenty years - and youthfully - well, now we begin to be closer to my original proposition.
In fact, the body really is just like a car. It is a mechanism, and to use it is to wear it out. Aging is the accumulated damage of use, just as it is in mechanical devices. There is nothing special about figuring out what this damage is and undoing it. We still *age*, but we progressively work out how to *reverse* the accumulation of damage.
What this amounts to of course is the reversal of aging and the restoration of youth. Those who are old, and who carry in their bodies a great deal of accumulated damage, will see that damage reversed, and their bodies "youthen".
Aging in fact basically comes down to about six or seven forms of damage. For example, you accumulate "gunk" in your cells, and between your cells; the body as a byproduct of metabolising generates a range of end-products, and it knows how to get rid of a lot of them - *but not all*. Age-related macular degeneration probably originates in one of these by-products; if you could explain to the body how to get rid of it, the blind would literally see again. A startup in Edinburgh I think it is is now in stage one trials for a medicine to do just this.
If you're interested in this, have a look at the SENS Research Foundation. Disclosure : I contribute monthly, and I'm going (hopefully) to be doing voluntary work (software engineering in my case) on research programs relating to the subject.
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luna74
I am a physician and I stand up for the right to die honorably (this also includes every individual has a right to choose when to die and may request medical aid for this purpose) and the right of living (yes, this means I am against at arbitrary abortion). Thanks Economist for giving me an opportunity to share my opinion...
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wk58ujhE8G
I completely agree that people should be helped to die well (including with assisted dying if really wanted). Our civilisation has tended to obscure the part death plays in our existence on this planet. So death has become something people want to avoid thinking about, and facing. However we are all going to die at some point. Thinking about how to do so well is important.
Until nearly the Age of Enlightenment is was almost a universal fear in the Christian world that one might die alone. Death was seen as an individual experience but not a personal one. One died as one had lived -- in community. It might be the village community or a monastic community but it was essential that one's passing be witnessed by living souls who knew they would soon follow but who marked your passing with prayer, reconciliation and consolation.
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Our society is far more individualistic. And, as often as not, we die unattended and our passing becomes common knowledge only after a Third-World orderly sees that one's heart-line is flat. An MD is called, relatives informed and then a trip to the hospital refrigerator.
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The past also dignified our last moments and consoled both the dying and loved ones by carefully crafted rituals that located death in a vast cosmos. Last Rites provided a formula that made death a transition.
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Have you ever attended a "memorial service" to "celebrate the life" of an unbeliever? It is filled with enforced gayety ("He made people laugh.") Most attendees don't know what to do with themselves -- they sit in their folding chairs more or less embarrassed by it all. (One of these I attended a week ago consisted entirely of fifty-odd people watching a slide-show on a large, flat-screen TV -- it had all the intimacy of an informercial for time-sharing in Florida.)
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In the Catholic Requiem Mass, for instance, the deceased is prayed for as a member of a community of faith in which both the living and the dead find who they really are -- this community exists beyond time.
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This, to me, gives death meaning beyond "He made people laugh." (I remember one hideous "celebration" in which a speaker released wind-up toys among the mourners to accentuate the deceased all-around jolliness. It was like being sent to eternity from the "Buzz Lightyear" aisle at "Toys R' Us.")
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In our own time, Reality exits for the individual ("I have the right to control MY own body!") So, many go into eternity trailing clouds of nothing. Just a sanitation problem -- maybe it makes people laugh.
Yes, modern secular society seems sadly adrift in its attempts (actually, does it even try?) to make some kind of sense out of a funeral or whatever substitute arrangement is desired.
I read a couple of years ago the depressing news that nowadays in Britain the two most requested pieces of music at these events are 'My Way' and 'Always Look on the Bright Side of Life'. Sad in two different ways, of course. Most of us, alas, don't live life 'our way' and muddle our way through our appointed term in one or other of the conventionally sanctioned forms society makes available to us. It's a poignant piece of posthumous self-deception to pretend otherwise to the bludgeoning bombast of one of Sinatra's worst songs.
The other choice, of course, is an example of the enforced gaiety you mention. Not even when grieving must we be allowed to drop our shallow flippancy. The first time someone chose it, of course, it might have been an act of cheerful defiance. Now it's just the sound of the sheep obediently acquiescing to the new commandment of our age - 'Move on'.
Indiana Mak
Very appropriate article on the sensitive subject. The medical profession must be mandated to consider the circumstances around a critical patient. If s/he is a young one with family to tend to, it is necessary to try leaving no stone left unturned. But if s/he is 60+ with no dependents, early death would be a blessing. The least a treating doctor could do is to tell the patient and family honestly the gravity of situation and leave the decision unto them. But again, there is sensitivity around this and such a message from doctor might be taken as inability / incompetency by some. Tricky, isn't it?
guest-nilawae
Medical establishment has one goal only - to maximize their income, where (restoring or improving) health of people is just a collateral benefit. For this goal the Medical establishment does not want people (clients) dead neither cured completely, because in both cases they are lost as clients (i.e. income source). This explains the idiocy of so called end-of-life care.
See a very useful paper from an exceptionally intelligent author: "Medical Nemesis - The Expropriation of Health" http://www.columbia.edu/itc/hs/pubhealth/rosner/g8965/client_edit/readin...
 
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