Being Mortal: Medicine and What Matters in the End – A Kapok Review

The end of life is rarely a compelling topic. Most of us wish to avoid conversations about death for as long as possible, but therein lies the problem. When the topic is regularly avoided, families don’t have the conversations they need to until it is too late.

Or, they make decisions based on partial information, which can lead to the wrong decision or an incorrectly timed decision.

This is where books like Being Mortal: Medicine and What Matters in the End come into play. In this book, Atul Gawande highlights important topics about aging and the end of life, with a particular focus on assisted living, independence, hospice, and decisions surrounding death.

The presented information provides insights about the end of life, including topics and challenges that aren’t commonly discussed.

Important Lessons from Being Mortal

Being Mortal relies heavily on anecdotes, both from the author’s life and those of seniors and their families. This style can feel meandering at times, but there are some valuable points covered throughout the stories.

The Limits of Assisted Living and Nursing Homes

Atul Gawande spends a decent amount of time talking about assisted living facilities and the history behind them. There’s a strong focus on how complex these environments can be for seniors because many focus on safety above anything else – including the senior’s interests.

Such facilities are often heavily organized as well, with seniors being required to get up and have meals at particular times, regardless of individual wants.

The focus on safety can mean there’s little ability for seniors to engage in things they care about and that make life work living for them. This is particularly true for seniors who want to be active and involved in life.

Further, a room in a facility often doesn’t feel like home and seniors may be provided few choices about their life. This can be devastating.

These issues aren’t true for all facilities and seniors aren’t all impacted in the same way. Atul Gawande talks about a few places that have sought to provide different environments, ones where the seniors’ interests are front and center. There are likely other places that take similar approaches too.

This topic highlights the importance of looking for the right fit.

It also helps to show why some seniors simply don’t thrive in assisted living, regardless of the care we put into finding the right environment for them.

The Impacts of our Modern Medical Focus

Modern medicine has allowed people to live longer, to be more functional, and to be in less pain than ever before. While this is generally a good thing, there’s considerable debate about when to end treatment.

Atul Gawande talks about how, in some cases, aggressively lengthening life might not be the best for the individual, especially if quality of life is severely compromised in the process.

He also talks about how doctors often aren’t taught well about the distinction between quality and length of life, so they can struggle with advising families. Some may even be unwilling to provide details about the actual life expectancy of a given health condition or what can be expected after a given treatment.

The default is often the most aggressive treatment of the condition possible, even when the benefits of such treatment aren’t that dramatic.

Families can make better choices when they understand the options they’ve been presented with and how these aligns with the senior’s values.

The Importance of Asking What Matters Most

As Atul Gawande discusses, there is often an array of different treatment options for health conditions, including medications and surgery. The sheer number of options can quickly become dizzying, making already difficult decisions even more overwhelming.

It’s no wonder that so many people turn to the medical default – aggressive treatment of health conditions.

The book regularly comes back to the idea of asking what the senior wants and what living looks like for them.

Do they want to be kept alive at all costs? Do they want every operation, even when the operation is risky and there’s a chance it leaves them much worse than they were before?

Is aggressive treatment the right answer if it comes with strong side effects and may only extend life for six months? Sometimes it will be, sometimes it won’t be. That’s why it’s so important to understand the risks and potential benefits, and simply have the conversations about what to do next.

Is Being Mortal Helpful for Caregivers?

Being Mortal isn’t a book of answers or solutions. You may even find yourself with more questions and confusion after reading the book than before you begin.

However, the questions raised are important ones for caregivers and for society as a whole.

Some of the discussions are beyond the scope of caregiving, true, including those that look at the nature of assisted living and the way that the medicine of longevity has progressed.

Yet, while these might not help you directly, they provide new insights that can guide you in the future.

It Can Help You Consider the Path Forward

Perhaps the most helpful parts of the book are the discussions about real patients. Some of these focus on nursing homes or assisted living, while others focus the final months, weeks, and days of life.

These are stories about decisions that were made and those that could have been made. Stories that show the complexity of end-of-life decisions and how constant aggressive treatment of conditions isn’t always the right approach.

Such stories provide caregivers with valuable information about alternative paths – and the importance of working out what the senior actually wants.

It May Help with the Senior’s Mental Health

Parts of Being Mortal talk about the experience of aging for seniors, including what they lose and what matters to them.

An example is a section talking about attempts to create thriving assisted living environments.

One place did so by providing residents with plenty of choice, including the ability to lock their doors, to choose their meals, and to opt in or out of different activities. Another introduced a shocking number of pets (including 100 parakeets!).

While there is certainly no formula for improving assisted living, steps like increasing autonomy and providing more purpose to life can make a large difference.

These principles aren’t limited to nursing homes either. They’re also relevant for helping to make life more meaningful for seniors living at home.

It May Change Your Focus

I initially heard about Being Mortal on a caregiver forum, where the book was recommended to the woman whose mother was in the late stages of dementia (let’s call her Alice).

Whenever Alice visited her mother, she’d attempt to do all the tasks that nursing staff would normally do, such as dressing her, bathing her, and helping her toilet – often with a ton of frustration and little success.

Someone on the forum pointed out that Alice didn’t need to help in that way. Instead, the most valuable thing that Alice could do was to simply be with her mother. To spend time and allow the staff to do the practical things that needed to be done.

I suspect that caregivers often get lost in busyness because we still have that medical model in mind. We’re trying to ‘fix’ the senior’s experience, without recognizing that what matters now isn’t how long they live but the quality of their life.

The more we learn about the end of the life, the easier it is to become still, sit with discomfort, and make wise decisions.

The Problems With the Book

Being Mortal is a fascinating read that stirs up important questions and makes readers confront aspects of life that are often avoided.

Still… no book is perfect and there are some issues to be aware of.

The Length

Like most books in the field, Being Mortal is longer than it needs to be. What’s more, the valuable points and insights are often embedded in stories about people’s lives, so readers cannot easily skip the book to find the information they need.

And, honestly, Atul Gawande is meandering in the way he writes. While his anecdotes are interesting, it’s sometimes not clear what point he’s trying to make. Or, the same point could have been made in half as many words.

I’ve managed to cover most of the fundamental ideas in this post alone. The rest of Being Mortal is largely stories and illustrations. Those are still worth reading, but mightn’t be what you need if time is short.

Little Information about Improvement

The most tangible piece of advice in Being Mortal is the importance of talking to seniors about what they want, especially in relation to priorities at the end of life.

Some of the stories talk about what doing so can look like, but only for those very specific situations. There are still many gaps for readers to think about, research, and fill on their own.

This approach could be frustrating if you’re looking for advice and ways to do things better.

It Misses the Good Things

Readers of Being Mortal could be forgiven for thinking that aging is always a horrible process and that healthcare rarely gets things right.

Yet, that’s only one side of the coin.

There are still many examples of dignity, grace, and even beauty in aging and death. Plus, for all Atul Gawande’s complaints about assisted living and nursing homes, those environments do work well for some people (perhaps even many people).

Similarly, some medical professionals are competent in discussions of treatment risks and the balance between length and quality of life.

Read with Caution

Finally, it’s important to read Being Mortal with caution. While there’s plenty to be learned from the book, the approaches that work for one person and situation don’t necessarily work for another.

For example, the end of life typically involves a slowing down, where people eat much less and sleep much more than they ever did before. This is a natural part of dying – if a person is actually nearing the end of their life.

However, some seniors sleep more and eat less not because their body is dying but because they have low motivation or are depressed. In such situations, it’s important to look for solutions, rather than following the senior’s energy.

The balance between independence and safety also differs greatly between families and individuals. Atul Gawande’s writing sometimes suggests that stopping treatment then focusing on hospice and family is the best choice, but that’s not true for everyone. Some people prefer to fight as much as they possibly can, even if the chance of success is slim.

Final Thoughts

Despite the limitations, Being Mortal really is worth reading.

The book provides valuable insights into how the end of life can go, giving families the chance to think and plan early. That alone is powerful, as being willing to think about the future can make planning and processing considerably easier.

That said, this is also a sad book that over-emphasizes that worst case scenarios for aging and death. It could be too much for some caregivers, especially if you’re already on an emotional rollercoaster.

If you’re interested in the topic, but also vulnerable, try reading the book slowly and allowing yourself time to process.