Science and Inquiry discussion

For November 2015 we will be reading Being Mortal: Medicine and What Matters in the End. Please use this thread to post questions, comments, and reviews, at any time.

I'm about half-way through this book and I'm really enjoying it. Well, maybe "enjoying" is not the right word.

I think it's an important book and should be read by anyone approaching old age or who has parents approaching end of life. Which means almost all of us.

Not only am I getting quite old myself, I recently, with my siblings, went through my mother's decline and death. In 2008, when her husband died, we decided she couldn't stay in her home, much as she wanted to. She clearly wouldn't have been safe, so we steamrolled her and put her into an assisted living facility. It was a nice one; no horror stories. I still believe it was the right thing to do, but she would have preferred to live with one of us. I suppose many, if not most, surviving children second guess their decisions about their ailing parents after the fact. I don't beat myself up too much. But the thing is we had to make the decision pretty much in a vacuum. As a society we don't discuss these issues very much and there aren't very many resources for people struggling with what to do. That's why this book is so important.

Betsy wrote: "...I don't beat myself up too much. But the thing is we had to make the decision pretty much in a vacuum. As a society we don't discuss these issues very much and there aren't very many resources for people struggling with what to do. That's why this book is so important. "

Yes! It's horrible for all concerned & we had no clue where to start with any of our aging relatives. It's very difficult to see things from their perspective & this book helps a lot.

My in-laws were adamant about remaining in their house & it became more & more obvious that they couldn't handle it: kitchen fires, spoiled food, & all sorts of minor disasters.
My FIL demanded that he be able to drive. We tried for ages to get him to stop & when it became very clear he HAD to stop (3 accidents in as many months) we tried even harder. Everyone else whimped out on us - the other siblings, social services, the police, & everyone blew us off. We were frantic & still trying when he had his last accident - 4 cars & a pedestrian sent to the hospital, no life-threatening injuries, thankfully. Suddenly the police were right there asking us why we hadn't taken his keys away.

It was horrible, but the worst part was it killed my FIL. To him, not being able to drive equated to no longer being a man or something. He died in months. None of us could help him. No one involved knew how to deal with his expectations or how to mitigate the situation.

My MIL went a year later - still in her house - miserable.

My uncle had it better in a retirement community which he entered at 70 years old knowing he had about a decade to live due to Parkinson's. It was still a rough trip even though he remained there from independent living all the way through assisted, nursing, & finally he died there. He still never really liked the place, although it's one of the best.

I really wish I'd been able to read this book 20 years ago. It would have helped all of us cope with it all a lot better.

Jim wrote: "Betsy wrote: "...I don't beat myself up too much. But the thing is we had to make the decision pretty much in a vacuum. As a society we don't discuss these issues very much and there aren't very ma..."

So sorry. I think when the company my Dad worked for went out of business (it was an electronics firm and it was so long ago I'm not sure what happened, but maybe they moved production offshore?) he started dying. He was in his mid fifties and he went into an immediate decline and died of a stroke at 62. Not old at all. Well, that was a tangent, but what you said about your dad not wanting to give up driving...I can relate. Guess I will have to read the book. I really don't look forward to it though.

Nancy wrote: "Guess I will have to read the book. I really don't look forward to it though. "

That's interesting. Do you know why you're reluctant? I know many people find the topic depressing, but I didn't find this book depressing at all.

None of us want to get old and infirm, but we all will (at least the old part). Gawande illustrates, with some well chosen examples, how those of us who must deal with the elderly make assumptions which are based more on our preferences than on what the elder really wants or needs. And he discusses ways that can be avoided, by asking the right questions of the person.

In some ways I think it's a hopeful book. A lot of people and organizations are starting to focus on the issue of infirmity and age and how best to treat people with respect and care. I hope this continues into a more mainstream discussion -- maybe on TV?

Nancy, I agree with Betsy. This book isn't a downer. It's quite hopeful. He also traces how assisted living & nursing homes came to be. That in itself is very instructive. Repeating a bit of what Betsy wrote, what we, the younger want, & what the elderly want can be at odds. Resolving that is in our best interests & it need not be a horrific experience. He makes it quite logical & much easier.

I just started reading the book. Of all the books I have read with this group, this one is the most directly relevant to my life. After reading the first third of the book, it's not really about science; it is more about how Western medicine does not really meet the needs of the elderly.

Gawande's book deals with end of life illness and dying, but stops there. In my view we also need to be examining what happens after death, and we all need to be aware that there are alternatives. I've lost three family members in the last five years and I, and the rest of my family, were totally at the mercy of commercial funeral homes. We had no idea what the law required or what options we had. I think we were fleeced in at least one of those cases. Wish I'd known about "death midwives" then.

http://www.yesmagazine.org/inside-the...

David wrote: "I just started reading the book. Of all the books I have read with this group, this one is the most directly relevant to my life. After reading the first third of the book, it's not really about sc..."

That sounds ominous, David. I hope you're not ill.

Betsy wrote: "Gawande's book deals with end of life illness and dying, but stops there. In my view we also need to be examining what happens after death, and we all need to be aware that there are alternatives. ..."

Interesting article! I'd be interested in reading a book on it if you stumble across one. It's not something most of us research before hand so we're really vulnerable afterward. My body goes to the Anatomy Board & will be returned in 6 months cremated. My wife just wants to be cremated, though. We've never given any thought to memorial services. Probably should.

I wonder why we're so reluctant to think about death and dying. I think it's natural to fear dying, but why can't we even discuss it?

Is it all cultures? or just Western or Christian? I'd be interested in knowing whether those of you in other countries and with other traditions have the same difficulties that so many people I know do.

Is it just fear of the unknown? I do not believe in an afterlife and I don't think I really fear death as much as I fear dependence or loss of cognitive function. But of course, I may change as I get closer to that day. I think the human animal naturally fights to live but I have also thought if the fight became too difficult or wearisome, that I might give it up easily.

Just musing.

Betsy, no, I am not ill. But the stories in the book definitely resonate with experiences I had and am having with loved ones.

It's surprising to me how many otherwise rational people won't discuss their death at all. My in-laws were in their 80s when they died, but hadn't updated their wills for over 40 years. My FIL had a bad heart, finally dying from his 4th heart attack in 15 or 20 years, so it wasn't unexpected. They were obviously just ignoring the problem. Unfortunately, it became the problem of the kids & was ugly.

My family has been a lot better about that. Everyone has had wills & let the younger generations know what their decisions were. They were made decades ahead of time & kept updated as things changed.

I just finished this book. Gawande really helps us to make the right choices for a terminally ill patient. It is truly excellent; I highly recommend it. Here is my review

I finished it a couple weeks ago; it's really a pretty quick read. Here is my review.

Excellent reviews. I'm so glad you liked it as much as I did.

I'd be interested to know what the medical community thinks. Do we have any physician members who have read the book?

Still have not read it, but you've talked me into it. Just that getting old sucks so much. And it doesn't get any better as you go along. I just can't envision the upside.

There are some upsides, believe it or not. I have been retired for about 8 years. It's really nice not having to get up and go to work every day and answer to someone else. I also like not worrying about whether I conform to someone else's idea of who or what I should be. I recently put some apricot streaks in my grey hair. ;) Sure, your body begins to betray you, but you can take things as easy as you want. And you can get away with being crotchedy or grouchy.

Of course, I don't look forward to becoming feeble and losing my independence. I'm trying to make plans ahead of time, and also I talk to my family about it as much as I can so they know what I want.

Retirement sounds good. Although if the economy doesn't improve there is no light at the end of the tunnel for me.
Minnow paws particularly sucks. I really hate minnow paws! Not that it's painful, exactly. I just hate what it's doing to me.
I am thinking about going all-in. (I don't have kids, which may be sad, but if I did, I would have something to continue to live for.) At some point, cashing out my chips and traveling and doing whatever the heck I feel like doing, and when I run out of money, health, ambition, whatever ... then go mountain climbing with no ropes. Just grinding along and fizzling out at some point just is not appealing to me.
I like the idea of the apricot streaks, by the way! I had my belly button pierced a couple of years ago. Just because. Now because of the minnow paws, I don't have washboard ads to show up my bling. :-(

Nancy wrote: "Retirement sounds good. Although if the economy doesn't improve there is no light at the end of the tunnel for me...."

Since you're still breaking & training TB's, you just might die suddenly.
;)

Not a bad thing IMO. Mom is 76, still riding to the hunt & taking care of a farm with a dozen horses (TB's & crosses), some of whom run steeplechase. She gets a 'younger' gal (60) or guy (56, same age as you & me) to ride the really tough ones like the Irish hunters bought this year. She's hoping to go fast & furiously. Both of us hope so. She'd be miserable if she couldn't get out & about doing things. She had a horse lay her up for a week in the spring & I regretted calling her several days. The woman was impossible!

Her mother shot a deer at 84 & made the concession of allowing her grandsons to carry it in for her. A few months later she had a series of mini strokes that turned her into something resembling an old baby. It was awful. Everyone was relieved when her body died 2 years later.

Gawande did discuss suicide & assisted death a little, probably as much as the scope of this book allowed. It's a tricky subject that I'd like to read more about. About the only resource we have plenty of is people while everything else is dwindling at an alarming rate. I've read that it's not unusual for a person to use 90% of the medical resources devoted to them in the last month of their life when there is no hope of recovery. Very slippery decision(s), though.

If anyone knows any good books on the subject, I'd be interested.

Me too. I'm grateful that I live in one of the states that allows "death with dignity", but you have to be immanently terminal and jump through an awful lot of hoops. What if you just get tired? I think at my age I ought to be able to make the decision for myself.

It's a step in the right direction. Given the possibility of abuse & the impossibility of reversal, hoops are necessary. Hopefully moving to another state to enter the hoop circus won't be soon.

My Dad died of a stroke at age 62. It only took a few days...of course it was an awful shock because he was so young. it was also extra stressful because they kept him "alive" an extra day or two in order to "harvest" his organs so someone else could use them. At least he didn't lie around helpless for ages. Like Jim's grandmother, he would have hated that.
Jim, I am slowing down. Getting up on a 17 hand horse...it's not pretty. And accompanied by snaps, crackles, pops and groans.
Sudden death by horse sounds fine. Suffering in a hospital with broken parts is awful, don't want any more of that. increased senility via a few more concussions is not appealing either. Being paralyzed is about the worst thing I can imagine.
Probably due to Bible Belt upbringing, suicide is problematic for me. it makes perfect logical sense but I doubt I could ho that route. You beg other people to shoot you or pull the plug...which is unfair.
For me, I think it would have to be an accident. Not LOOK like an accident, but actually BE an accident. Mountain climbing beyond my skill levels, evel kneivel type stunts...something.
Of course, living fairly comfortably and just pottering around the garden and reading good books and tgen dying in your sleep would be ideal...some people actually are that lucky.

We seem to be on the same page, Nancy. The boys & I talk about a roofing project in my old age. Have to since Chip (my App) doesn't really know how to buck.
;)

I began reading this book today. It is full of practical descriptions and actual case outcomes which are similar to what I have been seeing happen all about me, except I have been seeing really bad outcomes. At first I was horrified, now I am resigned. What will be, will be.

I love this book. It is great to have an explanation for these things, if not a solution!

I live in a senior park of trailers. We moved here ten years ago because my husband had a stroke in the thinking parts of his brain. His motor skills are normal for his age, but he has slight-medium dementia.

When we moved here, I actually was too young - I did not meet the age set as minimum (my husband met the qualifications).The cul-de-sac we moved into had mostly empty houses. We didn't know it at the time, but there had been kind of a 'die-off'. It seems most of the former owners were in their 60's when they had bought these trailers - like us - and all had aged to their 80's together. At that point, they all began to 'fail'. Now, I am seeng it happen again before my eyes, since I am one of the youngest owners and most of the people who bought in when we did are now turning 80.

The number one issue I have been seeing is the complete denial of personal acceptance that aging problems are multiplying beyond one's personal capabilities. It is not so much they do not have access to care, it is more that they refuse care. In my state, there are almost no remedies to legally force an elderly person to accept care if they are able to prove under a quick brief test (conversation, mostly) they can answer questions logically.

I walk every day so I have met everybody. I take fewer than four medications a day (a criteria for impairment). Most of these folks have trouble walking now for differing reasons and all of them take many medications. I have watched them walk initially standing straight with firm steps ten years ago to now being bent over and walking with unsteady steps. Their houses are getting dirtier and dirtier.

What is frightening me is that no one can make them stop trying to live as if they were physically as adept as they were ten years ago. There have been several incidents and emergency calls to police caused by various falls, faints and cuts.

I have learned, for example, that a drug-addicted alcoholic 68-year-old woman, bent over now, needing a walker, who broke her hip last year, could hold off the police, fire dept. medics, social service workers and her family for two weeks while she lay in her own filth immobile on her couch! She could answer questions coherently. It wasn't until in a moment of uncertainty she agreed to go to the hospital she finally was taken to have her hip operated on. However, she screamed about having changed her mind all the way to the ambulance! She created so much attitude while in the hospital and so much resistence, that when she checked herself out, called a cab, and moved back into her trailer, people did not try very hard to talk her out of it. We neighbors cleaned her house, but we have no power whatsoever to help her, primarily because she quickly accuses everyone of stealing and abuse. She picks up temporary home helpers by picking them up from grocery store parking lots, and they scare the rest of us. She had a lawsuit against a grocery store because she fell, but she created such misery for her lawyer he dropped her case. She takes a cab to a casino regularly, and falls asleep at the slot machines. The employees don't touch her or wake her. She has stayed the night with her head propped up on a machine. (Sometimes she calls my husband to drive her home, which is how we know.) She has two dogs. They poop all over the inside of her house. Occasionally, someone will scoop it up, when they visit, when she asks someone to do it.

This is the worst case so far where I live, but not the only one I see occurring to lesser degrees all around me.

Frankly, I'm am now beyond being amazed at how much 'autonomy and independence' society continues to allow the elderly infirm and demented if they refuse to recognize their infirmities. My state is going to what they call 'Silver Alerts' when old people have disappeared for a few days from their house and someone has noticed. That seems to be the extent of care that my state can provide if someone past 65 refuses help.

Wow. Thanks for writing that.

I'm 100% behind assisted suicide, BTW. Here, there has to be two doctors to sign off and an estimated six months to live. After seeing how old age robs the person of good health (I have been seeing typical clues in this park that someone has less than two years - such as not understanding the TV much, but staring at it 24/7, falling on the floor but not calling for help, eating spoiled food, accidents in one's chair several times a week, missing meds even while insisting they took them, trying to walk around inappropriately dressed or drive, but end up sitting in the car trying to move levers or get the key in the slot, etc. Reading is a lost art to these folks!) I am also for 'being tired' as a good reason. Death is not terrible - living independently for your last ten years is hellish.

Wow, April. That's something to think about. I think in many places family members can force an elder to do things by having them declared incompetent but it means going to court and being able to prove that they are a danger to themselves, if not to others. But it's not easy.

But we must ask, what right do we have to enforce our will on others? If they choose to live that way, isn't it their choice? I can see your point of view, too. It affects others, not just them. It's never easy.

IDK the answers entirely, Betsy. I used to think, well, they are adults. But after having seen the urine and poop everywhere, not cleaned until a younger person happens to visit whenever, or seeing mostly blind (cataracts, retina issues) adults eat rotten food they can't taste or smell, or seeing adults catch themselves on fire (my neighbor did this cooking a dinner for us and her husband at her house for Thanksgiving) or burn their hands on stoves and ovens because they forgot that a baked object at 300 degrees means its hot (a couple of people did this, including my husband), or my closest friend here, who died this year, walking about on sharp stones barefoot in an bathrobe, when she had always dressed up, or people who repeat the same story in EVERY conversation and visit from neighbors, or my neighbor who fell in the bathroom and lay there for 4 hours calling for her husband, who couldn't hear her because he is almost completely deaf, so when he finally missed her, it took him another 20 minutes to walk 15 feet to the bathroom because he has dizzy issues and must use a walker that he is too weak to use well, after struggling out out of his chair (he cannot get out of his chair now at all, she died a few months ago), and after finding her calling 911 because it needed three young men to lift her despite her small frame....etc etc etc.

We treat animal pets better, I think, generally. In America, our ethics are a bit all over the map on this, me too.

You're right. There ought to be a way that social services could provide some kind of daily check and assistance for these people. But instead our government keeps cutting funding for social services. It makes me furious.

Is it just a matter of cut funding or the problem we have distinguishing whether adults are capable of making their own decisions & what to do with them when they're not? For adults living on their own like my in-laws did, it's almost impossible to deal with aging issues unless they want us to. I know that first hand. It's got to be 100 times worse if there are no relatives living nearby, something that's just awful to even contemplate & that seems to be what aPril is describing.

aPril mentions the authorities asking a few questions to determine competency. I wonder how well crafted the questions are & how long the test is? I've recently been reading a bit about artificial intelligence (AI), the Turing test, & remembering an old program, Eliza. It's not terribly hard to fool people for a short period of time. I remember my uncle was quite lucid first thing in the morning, but faded just before lunch. He'd nap, then be fine for lunch & a couple more hours before fading again. Repeat. Depending on when he was asked, I'll bet there would have been different results. Fortunately, they had him full time - not the case of someone living in their own home.

If they don't pass, the quandary deepens since no one wants to take away rights a person should possess & we're at odds about those rights. Gwande makes that point in his section about assisted living & safety. Are their any relatives involved? In a free country, can/should we require adults to register as they age?

I don't know anything about the competency laws we have. Were they crafted with old folks in mind? My impression is they grew out of criminal law. I would be very interested if someone with knowledge in the area could tell me. Gawande mentions that we've never had so many old people before & I believe he said something about old folks tending to make the laws. We're in new territory. aPril's stories are horrifying & far too believable. I'll bet the situation will just get worse.

My wife's aunt lives in an independent senior living (IL) facility (an apartment complex) which has monthly inspections. She's on the fence about them. Some managers make the inspection feel like a criminal investigation, others like a visit from a new friend. She's told us about neighbors who, in her opinion, should be passed along to assisted living (AL) yet slip through the cracks while others are forced into AL when she thought they were just fine. Both situations upset & worry her terribly.

I used to work for a company that specialized in IL & later created a line of AL facilities. We also bought &/or managed some facilities that did both & even some that went to nursing homes. As the IT guy, I wasn't involved with the residents much, but heard a bit about it. We didn't have many horror stories, not even many issues with liability or accidents, but there were always a few. Second guessing on the parts of the caretakers, managers, & executives was tough. Not a matter of laying blame, just really wondering if they had done right & what they could/should have done better.

I finished the book today. I could not stop reading it. I suspect I will be reading it again, especially since it clarifies what anyone can see is a messy scary emotional change for many families having to deal with an elder's oncoming physical issues and death.

While I will be giving the book five stars and I am glad I read it, I'm not sure reading it through Thanksgiving was ideal....

My bad.

aPriL does feral sometimes wrote: "I finished the book today. I could not stop reading it. I suspect I will be reading it again, especially since it clarifies what anyone can see is a messy scary emotional change for many families h..."

I felt the same about it. The first half or two thirds was ordinary, enjoying it reading, but the last part I just couldn't put down. I was up until 3 or 4 a.m. I think.

I'm glad you liked it, aPriL. I really appreciated your stories too, horrible as many of them were.

Thank you. I know what you mean.

I read this book earlier this year and thought it was well written and presented some very important information. I also thought the sections on the development of assisted living and nursing homes was interesting.

One thing that I have noticed recently is that people in general are very reluctant to address concerns about an older person's abilities.

I really became aware of this when a woman who has been putting the schedule together for a shared administrative responsibility at my church started making mistakes in the schedule and then stopped sending it out entirely. She is over 80 and has changed in the past two years. I had some conversations with her where she was extremely confused and so did another woman. When we started discussing replacing her with another volunteer, I had people make sure I was aware that she was hard of hearing and was very nice. Neither of these had anything to do with her inability to read a calendar or to make phone calls. She has no relatives in the area and lives alone, and people who have known her for some time do not want to accept that she may not be the same any more or may be in need of assistance.

Jenny wrote: "I read this book earlier this year and thought it was well written and presented some very important information. I also thought the sections on the development of assisted living and nursing homes..."

If she is driving to church and other places, I suppose when she kills someone or herself, her problems will be finally acknowledged.

I wish I was kidding.

Another book on this topic, also by a practicing physician, but maybe with a little bit more practical advice, is The Conversation: A Revolutionary Plan for End-of-Life Care, just published this year. Another one, which may be even more practical, is AARP the Other Talk: A Guide to Talking with Your Adult Children about the Rest of Your Life from AARP.

I keep coming across additional books on this and related topics. It seems to be a popular issue right now, which to my mind is a good thing.

Two more that just showed up in my recommendations and look interesting: The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life and Knocking on Heaven's Door: The Path to a Better Way of Death.

I'm checking out your links, Betsy!

I hope that these issues don't stop at conversation and worry.

They all look really interesting. Thanks, Betsy.

aPriL does feral sometimes wrote: "I'm checking out your links, Betsy!

I hope that these issues don't stop at conversation and worry."

I hope so too. I'm giving Being Mortal: Medicine and What Matters in the End to my family for Christmas. Is that too morbid?

I don't think so. Perhaps a wicked intense smile when they glance up startled after opening their present might be called for, though. And perhaps a declaration of what birthday you had this year was, and how surprised you are at how well you have held up. So far...

It's practical. If your family is anything like mine, you need to take the opportunity when it arises.

An interesting NYT article about using robotics and other technology to assist aging adults.

It makes sense, I suppose. I already use my smart phone to track my blood sugar and remind me to take medication. As long as it's not expected to replace other human contact. A common meme is that many lonely old people go to the hospital or the doctor just to have contact with other people. Apps like Skype can help with that, but just putting a talking robot in their home probably won't.

Interesting! There's a whole world of cool things opening up to help us. I don't think much of the idea of drones fetching pills, I'd think that would be better done by a ground based robot, but they could certainly have some utility around the house. I sure hope proper security is built in, though. A hacked robotic helper could be Twilight Zone nightmare.

I was just reading an article on OpenBCI
http://openbci.com/
a company that is "Dedicated to open-source innovation of human-computer interface technologies." IOW, mind control of machines.

I looked into an early interface for my uncle about a decade ago. He had Parkinson's & was having trouble controlling his mouse properly. This led to several tense situations as he'd drag & drop folders accidentally which would result in a frantic call. I'd stop by & fix the problem, but it made for a lot of frustration on both our parts.

The worst was when my cousin, his son, told him he should get a laptop. I had to explain that he couldn't use a touch pad. My uncle was outraged, so I brought a laptop from work for him to try. Needless to say, it didn't go well even after varying a lot of settings to try to accommodate his trembling hands.

I found the mind controlled mouse, but he never tried it. I'd moved away by that time & my cousin didn't think much of the idea. I was always curious & suggested it to a friend here at work who now has Parkinson's. He hasn't tried it, either. He doesn't even use the speech recognition, although I set that up on his work computer before he left. He wouldn't take the 20 minutes to fine tune it. I don't know why. It's frustrating.

I suppose part of the problem is that the person must first acknowledge the impairment before they will accept the solution. And that's difficult for all of us. To acknowledge an impairment, even a small one, makes us somehow less than we have been.

True. Denial is powerful.

Finally got around to this one. I agree that everyone over 60 and adults with parents in that category should read this.

Has anyone in the group that read it done anything new or different as a result?

Seems like it would be prudent to do research on independent living, assisted living, nursing home and hospice services while one still has a clear head and not under the time pressure of sudden health issues.

At a minimum, based on Gawande's advice, it would seem like a good idea to write down the answers to a question something like:

"Life will still be worth living as long as I can:
a)
b)
c) etc."

One of the case examples listed "eat chocolate ice cream and watch football games" but seems like the list should be longer and address such issues as being able to dress, bathe, use the bathroom, etc.

I wish Gawande had addressed a case like mine in which my wife and I are both only-children and have no kids. What special steps should we take to make sure our wishes are followed during our final chapter?