Atul Gawande is one of my favorite authors. I loved the Checklist Manifesto and was able to take a lot of those ideas to improve business processes in pretty much any venture I’ve been involved with. Gawande has the gift of identifying an obvious truth where others see only complexity. In Being Mortal, he takes on the topic of death. Knowing his background as a surgeon, I was concerned that he would tackle the topic as the medical establishment does today, clinically. I needn’t have feared. Not only is he a master storyteller that knows how to utilize emotion to make a point, this idea of medicine failing when death is inevitable is a major premise of the book. He makes it clear that the clinical approach is failing and we have to look outside the numbers to empathy and understanding the person rather than just fighting the disease.
He starts by looking back, to the glory days of when we all died peacefully, surrounded by family. He then destroys that myth. Many people, especially the poor, would end up in poorhouses which were essentially elderly orphanages right out of some Dickensian nightmare. For those lucky few elders that did have the opportunity to live with family, once the opportunity presented itself, they chose independence over veneration. “Whenever the elderly had the financial means, they have chosen what social scientists have called ‘intimacy at a distance.’ Whereas in early-twentieth-century America 60 percent of those over age sixty five resided with a child, by the 1960s the proportion had dropped to 25 percent.” He concludes that “The veneration of elders may be gone, but not because it has been replaced by veneration of youth. It’s been replaced by the veneration of the independent self.”
Death and medicine have an uneasy relationship. The more effective medicine becomes at healing us, the less accepting it becomes of death. Clinicians go into medicine to fix people and “we often regard the patient on the downhill as uninteresting unless he or she has discrete problems we can fix.” Finding and fixing a problem makes everybody feel good, yet talking about death seems like an acknowledgement of failure. A sad byproduct of this is that the geriatrics field is going away. “When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not.” What young kid coming out of medical school wants to play Debbie Downer when they can be the hero? “97 percent of medical students take no course in geriatrics, and the strategy requires that the nation pay geriatric specialists to teach rather than to provide patient care.”
He then dives deep into how we are dealing with the infirm. How did we go from the poorhouse to today? “Our old age homes didn’t develop out of a desire to give the frail elderly better lives than they’d had in those dismal places. We didn’t look around and say to ourselves, ‘You know, there’s this phase of the people’s lives in which they can’t really cope on their own, and we ought to find a way to make it manageable’. No, instead we said, ‘This looks like a medical problem. Let’s put this people in the hospital. Maybe the doctors can figure something out.’ The modern nursing home developed from there, more or less by accident.” Sadly, medicine ended up with caring for the old by default. They were so competent in fixing other diseases that they got the inevitability of death foisted on them as well. So what happened? Pretty much what you would think. Independence and living were replaced with safety because that is what works in a hospital. Add a litigious society where cover your own ass starts to play a role and the nursing home becomes a bubble wrapped, baby-proofed nightmare existence. As our author puts it, “our elderly are left a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.”
So what do we care about, especially when we know we only have a finite time left? The studies Gawande mentions all seem to point to one universal fact – facing your own mortality changes your perspective. “How we seek to spend our time may depend on how much time we perceive ourselves to have.” Ambition and vanity start to fade away and comfort and companionship become paramount. Interestingly enough, age doesn’t play any role in this, the amount of time you have left is the determining factor. There are some cool tie-ins to positive psychology here as happiness also seems tied to keeping the end in mind. My own conclusion is that facing your mortality, however you decide to do it, is a critical element in finding purpose.
The good news is people both outside and inside of the medical community are starting to deal with the purpose element of mortality. There have been large movements that focus on assisted living. The key word being living. What the folks at these centers found was that their residents needed a reason to get up in the morning. They needed a cause. For some this was taking care of animals or plants for others it was community. For none was it safety. “The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror. But if you do, it is not.” This naturally leads to legacy. Legacy is in many ways our lasting connection to that ‘something greater’. “Yet while we may feel less ambitious, we also become concerned for our legacy. And we have a deep need to identify purposes outside ourselves that make living meaningful and worthwhile.” Outside of purpose, the two other big factors to living out a good life(not in a hospital or nursing home) were autonomy and connectedness. The ability to still make your own choices and not withering away in isolation were critical elements to accepting the downward slope of requiring assistance.
Gawande also tackles the brutal subject of when we should consider if enough is enough. The medical community, by default, will do everything they can to prolong life. Doctors become myopic by looking for that one in a million cure and they are so focused on fixing the problem that they miss the big picture. From our own research we have found that doctors hate having the ‘maybe it’s time to consider quality of life’ conversation as much as the patients do. “The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Fix Something. Is there any way out of this?”
That’s where the conversation comes in. Too many docs bias towards the most optimistic outcome because they hate giving bad news as much as we hate hearing it. The problem is: “the people who opt for these treatments aren’t thinking a few added months. They’re thinking years. They’re thinking they’re getting at least that lottery ticket’s chance that their disease might not even be a problem anymore.” There is a huge disconnect in our hopeful thinking and the average results of these treatments. The fascinating thing is, if we have the real conversation, the one that leads to acceptance and often hospice the results can be stunning. “The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives – and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on our patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.” This conversation is no picnic and it can’t be rushed in to. In fact, it will take a number of different tries with the patient and the family. There will be a huge amount of anxiety and fear. But it is possible. As one of the palliative care docs said, “A family meeting is a procedure, and it requires no less skill than performing an operation.” Only this operation requires emotional intelligence. The key point to pull out of the meeting is how much the patient is willing to go through to have a shot at being alive and what level of being alive is tolerable. One patient said, “Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.” That simple description gives the family a wonderful roadmap of the difficult decision that will need to be made as the treatments and surgeries continue.
Gawande gives a great outline of how to have this conversation with a loved one by describing his conversation with his father when they had to go through this. First, “I asked him what his understanding of what was happening to him.” Then, “what were his fears if that should happen?” Next, “What were his goals if his conditioned worsened?” Finally, “What trade-offs he was willing to make and not willing to make to try to stop what was happening to him.” Then, it is up to you as the family member to get the real information from the doctor. Ask, “What’s the shortest time you’ve seen and the longest time you’ve seen for people who took no treatment?” Then ask, what are those same time frames with treatment? Too often, the difference is negligible. Remember, the doc hates giving this news. They want to continue to focus on fixing the problem where they have been trained and not on quality of life where they have not.
A truly wonderful book. Gawande closes with remembering the value that death can bring. “Technological society has forgotten what scholars call the ‘dying role’ and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.” We can only hope that we can all experience this level of self-awareness as we contemplate our own mortality.