A sad but extremely useful book

You know how, every once in awhile, you come across a book that you are so completely convinced that everyone in your life needs to read, that everyone gets the book for Christmas?

Except it’s February. And most of my family’s birthdays are in January (due to poor planning, I guess). Neither Christmas nor birthdays are going to come around anytime soon. I guess I’ll just have to send my family copies of the book now. And then in December I can send Christmas cards that say, “You know that book I sent you in February that you still haven’t read yet? Well, read it now, and Merry Christmas!” It will all work out perfectly. Lol. I’m joking! I won’t really do that. Or not exactly.

The book is Being Mortal: Medicine and What Matters in the End, by Atul Gawande. It was written back in 2014 so it’s currently free on Kindle Unlimited if you subscribe to that, otherwise it’s available used. Unless I send it to you. In that case it’s available free on your front porch in an Amazon box.

I recommend it for anyone who is not so young anymore, or who has aging parents. Much of the book would also be useful for anyone has a family member who is, due to cancer or other illness, reasonably likely to have a period of time where a lot of physical care is needed.

The author starts out by talking about the process of aging and how lots of things just start slowly wearing down and falling apart. It’s often not just one serious thing that kills us. It’s a complicated intermix of things. He offers some very practical advice regarding paying attention to things like balance and core strength, and foot and ankle health, because rounds of hospitalizations often start with trips and falls.

He talks about how doctors really aren’t trained for elderly care – they are trained to cure acute illnesses. And how our system isn’t ideal for long term care. This is not news, but he does a good job of discussing the various alternatives that we do have.

He talks about the different types of living situations available for people who are starting to struggle to live on their own. He gives the history of how that has changed in our country over the past few decades, and why. He explains the large differences between nursing homes vs. other more independent options, and what attributes make a big difference for the inhabitants to truly feel “at home”. Turns out it’s not as simple as I thought.

Turns out the key that helps people feel at home isn’t necessarily having their own place. The key is being able to do what they want when they want, and to make their own decisions – even when their decisions are bad ones. That’s part of being an adult – eating those donuts when we know we shouldn’t!

He also explains how grown children of the elderly are motivated to keep their parents safe – when safety isn’t necessarily as big of a priority for the elderly. It really helped me see the situation more from the elderly’s point of view, and not just from the point of view of the elderly parent’s grown children.

Then he switches away from logistics and living situations and talks for some time about making medical decisions. I used to naively think that when you got sick, the doctor had a treatment plan and that’s what you did.

I have since discovered on my cancer journey that there is never just one clear treatment and never one clear choice. It’s not always clear when one should have chemotherapy. And even if it is fairly clearly called for, there are dozens of different kinds of chemo and dozens of combinations of chemo for varying lengths of time.

It’s a maze of choices and doctors can’t always know what is best for each patient. Some doctors make most of the choices themselves and tell their patients what their “best” option is. When I was pregnant with Laura and they decided to induce labor early, I was not given any options or any way to be part of the decision-making. In hindsight I now know enough to realize that there were other options and there was plenty of time to have that discussion. It was a serious situation but not an emergency situation.

Other doctors offer lists and lists of choices and pros and cons and leave it up to the bewildered patient. The best doctors listen to their patients to understand the patient’s goals and values and then give relevant information and guidance, based on that specific person’s goals and values. Surgeons and oncologists as life coaches.

In my opinion, this section of the book was the most valuable at all. It explains how to have those important conversations with the doctors – what to ask and what about your preferences they need to understand. I can’t understate how difficult it is to decide what to do when suddenly faced with multiple treatment options, especially when your life is on the line.

It gets especially complicated when people are close to dying. We go to the hospital to be cured, but at some point, especially for the elderly and in cases like advanced cancer, there becomes a time when – there just isn’t a cure. At that point you will probably want to shift away from trying to cure the disease to trying to live the best you can in the short time you have left. These are very different goals and can result in a complete U-turn in your decision-making. And of course the patient and their family members aren’t all making that U-turn in unison. Because how do you know when you are at that point?

The final section of the book talked about what it’s like to be in hospice. This was very sad and I cried some, but it was also fascinating. I’ve never seen someone die. And yet, we will all die and we also will lose our parents and our spouses (if we don’t die first ourselves). I’m glad I now know much more about it than I did. It’s not a fun topic, but I feel at least a tiny bit more prepared. And I’m grateful for that.

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