Some notes on Being Mortal

Posted on November 7, 2014

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As many readers of this site know, I’m a huge fan of writer / surgeon Atul Gawande. His Checklist Manifesto book is towards the top of my recommended reading list. His latest book is Being Mortal: Medicine and What Matters in the End.

The book is primarily about how we handle the end of people’s lives, with an obvious focus on the medical establishment. Whether it’s this book or others, I think something like this should be required reading, as all of us are going to encounter what this book details someday. Whether it’s your parents, other family members, or yourself, the one thing we all have in common is death. And it seems we all have a story about some terrible way someone we know died,

  • on tubes.
  • incoherent.
  • in pain.
  • had a DNR but it didn’t matter.
  • the chemo shortened their life.
  • a bunch of unnecessary treatments were provided.
  • X family member wanted to keep going; Y family member wanted to stop things.

This book set out to address the above, and how we can better handle this process. How do we live a life worth living towards the end? The end is a given, but how do we make it peaceful?

Some quotes

I’m going to rattle off a bunch of quotations, interjecting some remarks here and there.

“There’s no escaping the tragedy of life, which is that we are all aging from the day we are born.”

This is something I always think about when I read anything about anti-aging drugs, telomeres, etc. How do you turn off aging without…turning off aging? Nobody wants to stay a teenager forever, but you need to age in order to get out of that. Can you, or your brain, become say, more mature, without aging? We tend to think of aging as only happening once we hit 30 or so, but it’s always happening.

There is a nice section regarding why we age. Gawande discusses the research behind efforts that our lifespans are programmed into us. That we -our genes- essentially start killing ourselves at a certain point. This is the idea behind things like telomeres and telomerase: We just need to stop certain processes from happening.

Gawande refutes this and declares most of the evidence is on the side of us wearing down, rather than shutting down. For example,

“3 percent of how long you’ll live, compared with the average, is explained by your parents’ longevity; by contrast, up to 90 percent of how tall you are is explained by your parents’ height.”

Gawande mentions how even identical twins vary in lifespan by an average of 15 years.

In some sense, this is great as it can empower people to prevent their own aging. That is, how much or fast they break down. In another sense, you’re almost forced to conclude immortality is impossible. Not just for humans; for everything. Whatever the system is, no matter how complex, and boy oh boy are humans as complex as it gets, it can only handle so much. When you add up all the things the universe can and will throw at a system, the limits of every system are reached in time.

The idea I really like that Gawande puts forward is how do we adapt? Shit can and will happen, how do we handle it?

Mind you, this isn’t a “I’ll worry about this when I’m old” phenomenon. You may be a teenage athlete who blows out their elbow and your pitching career is over. A construction worker whose back can’t handle bending over a thousand times a day anymore. A police officer who can’t be on patrol anymore. A nurse who can’t handle a week of night shifts anymore. An all-pro quarterback who can’t throw the ball as hard as he used to (Peyton Manning). How do you adapt? You may not be able to cure or reverse everything, but can you at least manage well?

Easier said than done

When talking to a geriatrician,

“The Old Crock is deaf. The Old Crock has poor vision. The Old Crock’s memory might be somewhat impaired. With the Old Crock, you have to slow down, because he asks you to repeat what you are saying or asking. And the Old Crock doesn’t just have a chief complain – the Old Crock has fifteen chief complaints. How in the world are you going to handle them? You’re overwhelmed…He has high blood pressure. He has diabetes. He has arthritis. There’s nothing glamorous about taking care of any of those things.”

When I first started having older clients sent my way, this is very much how I felt. People with so many things going on I routinely caught myself thinking, “Euthanasia might be best.” Seriously. For some people, if it were an animal going through the same thing, people would easily say “The humane thing to do is put them down.”

On the bright side, there is always something you can do. Which is of course part of the problem. Medicine often doesn’t know when to stop, and often does too much.

Vernacular

“The geriatrics clinic – or, as my hospital calls it , the Center for Older Adult Health (even in a clinic geared to people eighty years or older, patients view words like “geriatrics” or just “elderly” askance)

This is something I’ve noticed myself. I never refer to clients as “elderly” or even as “old.” I’ll routinely say things like, “You know, as people get older…” Even then, I’ll often go “and by older I don’t mean 60, 70, 80. I mean like once people start getting above 30 or 40.”

The idea is to not make people feel like they are irreparable. Even if they are, you don’t want to make someone feel that way. You want to give them some level of hope, a light at the end of the tunnel, so in the least they are working to make things the best they can. You don’t lie, you don’t give false hope -if there is no light coming this needs to be said- but there is almost always something that can be addressed better, and you go with that. “There are some things I think we can work on.”

From there you discuss the trade-offs of what can be done. “We can do this surgery, but it may compromise your ability to do X. Is that a trade-off you’re willing to submit to?”

(When it comes to the orthopedic world, this is one of the beauties of exercise in comparison to other treatments. “We can work on these exercises, but it may compromise your ability to…” There isn’t any! The effects are only positive.)

As an aside to what I specifically do, personal training, I go out of my way to insure people don’t feel like they’re in physical therapy. It’s not always feasible, but I try. People don’t want to feel like patients. Too often in physical therapy, things are so lax the person is often wondering why they’re even there.

Especially with older clients, I do not go easy on them because they’re older. Getting stronger, more flexible, in shape, is work. It should feel like it. Whether old or young.

A “splay-footed gait”

I’ve written a good amount about the feet turning out relative to the knees:

tight peroneals foot pain

I haven’t written much about why this happens, just that you want to work on it (get the feet straight). One idea behind why this happens is due to the footwear people indulge in. If you’re someone with a higher heeled shoe, your plantarflexors may not work as well as they should. (More on this here.) If, while walking, you don’t push your foot off as much as you should, yet you’re going to get the foot to come forward regardless, then you’re likely to turn it out. That is, rather than push the foot up to bring it through for your next step, you instead swing it around.

Like this guy,

Gawande brings up a different reason for this positioning, one I hadn’t heard before: Poor balance. He didn’t go into detail, but I’m assuming the rationale goes like this: When you have poor balance you want to have a wider base of support. It’s harder to knock someone over if their legs are spread apart than if their legs are together.

Rather than spread the legs apart though, one way to increase the base of support is to turn the feet out.

Standing Feet Turned Out with line

Standing Feet Straight with line

This feet positioning is especially common in older people -those who have the most balance trouble- so this makes sense to me. It’s worth mentioning older people are also known to have poor plantarflexion ability. Whether one theory is more right than the other, I’m not sure. Regardless, it’s worth working on these two things -plantarflexion ability and balance- with older people anyways. They will almost assuredly need both.

Getting enough calories in

One of the odd things that happens with age is often a decrease in appetite, and subsequently weight. Now, this isn’t everyone. There are plenty of those in their 60s and even 70s who could stand to lose some weight. But, it’s better to be a senior citizen who is a bit overweight than it is to be a bit underweight. Especially for women. Older, lighter women are often where the osteoporosis worries come in. Having some extra weight on you is more resistance the bones have to endure.

But it does happen where some older people get to the point they need to gain or at least maintain their weight. If nothing else, once you start hitting certain ages, those with naturally weaker appetites are more likely to be around. They’re more likely to have avoided diabetes and heart disease. And sometimes that inherently weaker appetite gets even weaker.

Gawande goes over getting enough calories in / losing appetite with age a few different times. I figured I’d rattle off some of my recommendations for those who have the opposite concern of 99% of people. I learned a lot of this from when I was playing football in college and trying to gain weight:

1) Track how much you eat- “Hardgainers” always underestimate how much they’re eating.

2) Eat more often- Eating 3 times a day? Eat 6.

3) Just eat all day-  You can do this by snacking. Nuts are fantastic here. I used to carry around a jug with me and pull from that thing all day. My stool had visible nuts in it, but that’s ok, I was swole son.

4) Drink more of your calories- I used to make shakes with about 1500 calories in them. I put everything in those shakes. I would make them with yogurt, milk, ice cream, peanut butter, protein powder, flaxseed oil, olive oil, eggs, I think I threw tuna in there one time, you name it, it went in. And for those thinking this must have tasted disgusting, the trick is to always top it off with honey. That always makes it bearable.

5) Hang out with the offensive lineman aka Change your environment- A great deal of the teammates I hung out with most were the biggest dudes on the team. We would go out for 25 cent wing night, buy one steak get one steak free Tuesdays, have eating contests in the cafeteria, etc.

Economics of geriatrics

Gawande spent a good amount of time on the fact geriatrics is nowhere near as financially lucrative as something like surgery, which Gawande practices. This presents one of the great “Wait, what?” moments of American medicine: The people who spend the least amount of time with the patients get paid the most, and the people who spend the most amount of time get paid the least.

Because this really isn’t a geriatrics problem. It’s a problem with most of medicine as well. How many primary care visits would you have to attend for your doctor to get paid as much as your three hour whatever surgery cost? The way medicine works is the more technology used, the more you can bill. Primary care, geriatrics, physical therapy, psychiatry, specializations where technological advancements play very little role, but a lot of time is invested, barely get paid relative to a surgeon. Gawande has some nice comments regarding the skill required in communicating with a dying patient. However, think of the cost of an hour of careful communication versus the cost of an hour of surgery.

Yet, and Gawande makes this very clear, in geriatrics, palliative care can achieve more than many of the higher level specializations. Gawande has routinely cited a study showing palliative care plus fancy care leads to 25% greater life expectancy outcome than does something like chemotherapy, surgery, etc. (only fancy care). The thing is, those who receive the additional palliative care stop the fancy care sooner. Point being the greater technologically based treatments not only aren’t as good (in this context, but it’s true in many others as well), they appear harmful.

This is one reason, under the new healthcare law, nobody in America should be complaining that doctors are going to be held to higher standards regarding the care they give. I hear people complaining “I want the most and best care available.” Typically, this means the most expensive. And best somehow gets grouped with “cutting edge” or newest. “Do everything you can, doc.” What people are missing is the most expensive care is not as effective! You’re being done a favor. It’s not death panels, it’s actually better care. Lesser costs are a nice side effect.

Here’s one more example of how backwards this all is: All we all keep hearing about is the tsunamis of baby boomers coming. How are we going to handle them, how are we going to treat them, how are we going to pay for medicare? Gawande mentions 97% of all medical students take no courses in geriatrics. THAT’S INSANE! The population most likely to use medical services, most likely to need them, is not learned about. Gawande references how geriatrics is a discipline on the downslope. The medical establishment not only has no clue how to deal the baby boomers, they appear to not even care.

Why how you end your life matters

When it comes to the topic of aging and death, I can see some making the argument, “Who cares about the last six months of my life? It’s barely a blip in comparison to my lifespan.”

This can be a selfish view as for many, the end of your life not only affects you, but those around you. In fact, the end of your life will influence your loved one’s lives longer than it will influence yours.

After talking to enough older people about this topic, one thing I’ve heard a few times is something to effect of, “My dad had a great life. It’s just the last year or so I wish was different.” Another client of mine, whenever this topic comes up, can’t help but tell me the story of how he wishes his dad wasn’t put on chemotherapy. “All it did was age him exponentially faster.”

Endings matter. The short version of this is think of a movie. If 80 of the 90 minutes are great, but those last 10 minutes suck, you don’t come away from the movie thinking, “Wow, what a great movie!” Even though 90% of the movie was great, those last 10 minutes make it as if the entire movie was subpar.

Gawande actually references some research by psychologist Daniel Kahneman about how we view ourselves, the same research I referred to when discussing how to end a workout. I’m going to borrow from that post, Making your (memory of your) workout more enjoyable.

Kahneman has referred to humans as having two selves. The experiencing self, and the remembering self. He came across this by studying colonoscopy experiences. Two big things were found:

  • We remember our pain through an average of two memories: How bad things got, and how bad things ended.
  • How long we experienced the pain does not influence our memory of the event.

Say you had a colonoscopy, and on a scale of 0-10 your pain reached a 10, and ended at 5. The average of those is 7.5, which is where you’ll remember your pain being. If someone else reached a 10, but was in pain for an hour longer than you were, and ended at a 0, an average of 5, they’ll still remember themselves as having a less painful experience than you, even though they were in pain for an hour longer!

From Kahneman’s book, Thinking, Fast and Slow, two conclusions from this were reached:

  • “If the objective is to reduce patients’ memory of pain, lowering the peak intensity of pain [how bad things got] could be more important than minimizing the duration of the procedure. By the same reasoning, gradual relief may be preferable to abrupt relief if patients retain a better memory when the pain at the end of the procedure is relatively mild.”

  • “If the objective is to reduce the amount of pain actually experienced, conducting the procedure swiftly may be appropriate even if doing so increases the peak pain intensity and leaves patients with an awful memory.”

To further illustrate this difference another study was done. People held one hand in painfully cold water for a minute. Later, one hand was held in the same water for 60 seconds, but the next 30 seconds were slightly warmer, by one degree. Overall, the one hand had 60 seconds of pain while the second hand had 90 seconds of pain.

If they had to do the cold immersion again, 80 percent of participants said they’d opt for the 90 second variation. To be clear, these participants asked to be in pain for 30 more seconds than they needed to be. They even knew one trial was longer than the other, and still picked the longer one! The barely warmer ending drastically changed people’s memories of their experience, thus changing their future decisions.

“The remembering self is sometimes wrong, but it is the one that keeps score and governs what we learn from living, and it is the one that makes decisions. What we learn from the past is to maximize the qualities of our future memories, not necessarily of our future experience. This is the tyranny of the remembering self.”

For some movies, if the whole thing is poor, no big deal. You move on. Other movies, the whole thing is great, you also move on. It’s those stories that are 90% awesome, but where the final 10% is bad, that gnaw at you. The ones you can’t get out of your mind. Nobody wants their life story to fit in this category.

Older people and teenagers

A big theme of this book is not just how we care for older people from a medical perspective, but a human one. Gawande cites example after example of nursing homes and such treating older people like children, and how this invariably fails.

I couldn’t help but parallel this treatment of older people with that of teenagers. Once humans hit a certain age, attempting to inflict your will on another person is one of the worst ways to try and get what you want. You can get away with this with children for a while, but eventually you have to let people be who they are. Where, whether you’re the parent, spouse, coach, or the child putting your parent in a nursing home, you acknowledge it’s not about what’s best for you. It’s about what’s best for them. Not, “What do I want,” but “What do they want?”

Gawande mentions how in nursing homes tenants can be written up for doing something like going into the cookie jar when not supposed to. Literally, a person is punished for eating an extra cookie. As Gawande says, “Just give them the damn cookie.” It’s their life, after all.

Independence is one of those things humans yearn for. As a teenager, you’re often not quite yet capable of it, but parents need to give it as much as reasonable until you are. As an older person, you’re often losing your capability of it, but your care needs to give it as much as reasonable.

You guide; you don’t authoritatively dictate.

Knowing what that reasonable line is of course no easy feat. There’s no strict manual on how to raise a kid. However, push an elderly person too much to conform to certain standards and they end up feeling without control, depressed, and as if they’re living a life they don’t want. Push a teenager too much into certain standards and you end up running the risk of your daughter up there on the stripper pole.

Tangential to this, I’ve found much of what older people want is reasonable, it’s the people helping them who don’t want to bother. Gawande talking to a caregiver:

“First, to genuinely help people with living “is harder to do than to talk about” and it’s difficult to make caregivers think about what it really entails. She gave the example of helping a person dress. Ideally, you let people do what they can themselves, thus maintaing their capabilities and sense of independence. But, she said, “Dressing somebody is easier than letting them dress themselves. It takes less time. It’s less aggravation.” So unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls. Gradually, that’s how everything begins to go. The tasks come to matter more than the people.”

I’ve seen this in personal training. One client of mine remarked to me the thing they most disliked about their first trainer was the trainer’s refusal to push them. She had pressed the trainer repeatedly to make things harder, but the trainer never did. This client has a history of multiple knee surgeries, and I believe the trainer 1) Was afraid to push this 2) Didn’t know how to handle someone with this history.

Another client of mine had shoulder surgery before starting with me. The surgeon initially balked at performing surgery.

“Just keep your arm below your head and you’ll be fine.”

To which my client said, “But I want to keep fly fishing.”

Surgeon, “Just stop fly fishing and you’ll be good.”

It was only after the client insisted that the surgery was performed.

Yet another person I recently started with was afraid to start exercising.

“My doctor told me to stay off my foot.”

Me “What do you mean? Like for a certain period of time or what?”

Client “No, completely off it.”

Me “What about walking, or standing?”

Client “He said to avoid that too.”

Me “Uh, how long has this been going on?”

Client “Over a year. He still wants me to stay off it.”

As someone helping these people, my job is to HELP them do these activities they want to do. It’s not my job to go, “Oh, you want to do that? Nah, just don’t do that.” Now, for certain people, with histories like the people above have, it’s may take a hell of a lot of work, patience, and knowledge to get them where they want to go. But it can be done. The first person just leg pressed 400 pounds (as a woman pushing 60), the second person, 65, just got back from a weeklong fishing trip in cold as hell Canada, and the third said to me this week, “I can’t tell you how good it feels to move around again.”

There’s still that “reasonable line.” I’ve had some people with long health histories, in their 50s, who want to know why their knees hurt when they play softball for a total of 16 hours over two days. Sometimes, my answer is simply, “Because you played softball for 16 hours over two days. I, nor god, can ameliorate that.” Or, for runners out there, no, not everyone can do a marathon and feel fine. “Why am I having trouble after my 20 mile runs?” “The 20 miles may have something to do with it.”

Even in these cases, I still help these people the best I can. I don’t tell them “Just stop X activity.” I tell them, “Look, we can work on some things, but there is only so much you can expect out of your body.”

That said, one of the above people wanted to have a good workout. Another wanted to throw a light metal rod around every now and then, and the last wanted to do more than lay or sit around all day. These aren’t unreasonable goals, nor are most, everyday people’s.

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