The experiment of making mortality a medical experience is just decades old. And the evidence is it is failing.
In his book, Being Mortal: Medicine and What Matters in the End, Atul Gawande posits what those of us working in eldercare already know: our systems are not working. As end of life care becomes more and more medicalized we often worsen the problems we are trying to “solve.”
My own time spent working in a nursing home as an occupational therapist, led me to this book. In my work, I was unprepared for the moral weight my own work seemed to carry: whether determining if someone was was appropriate for OT, deciding how long to continue treatment, or making recommendations for discharge readiness. I felt caught up in a larger system, without much understanding of where things had been or where they were headed.
Reading Being Mortal, helped couch my experience in the larger shifts happening in medicine. The book gave me concern for my profession, but also hope.
The book is not directly about occupational therapy. Some OTs do work on hospice teams, but the majority of us do not work directly in end of life care. Instead, we are right on its edge: in SNFs, acute care, nursing homes, etc..
I do think that every OT working with the elderly should read this book, because what is happening on the fringes of mortality has implications for us all.
Helping vs. hurting: We might be part of the problem
Our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.
One of the basic observations made in the book is that toward the end of life physicians will often prescribe treatments instead of having the hard conversations about how patients desire to spend their last days. Not only do these end of life treatments not help people achieve their goals, they push them farther from them. Often times at the end people most desire comfort, peace, and closure. But, instead, risky treatments can cause suffering and leave people surrounded by a frantic medical team, instead of in the quiet of their own home.
How does this affect OT? What is true at the end of life is true in the middle.
In order to deliver effective treatment, we need to understand what our patients desires and concerns are. If our treatments are not helping them achieve their goals, we need to accept the brutal truth that they are hurting. Luckily our treatments are often not life and death situations, as described in the book. But if they are ineffecive they are taking time, energy and money and giving false hope in return.
We don’t need to beat ourselves up about the past
I learned a lot of things in medical school, but mortality wasn’t one of them.
If you are an OT, who cringes at the ineffective treatments you have given or feels disheartened about the times you have failed to truly communicate with your patients (maybe this is how you feel about you current practice), you are not alone.
The best and brightest in the medical field are on the same learning curve. In the book, Gawande talks about his own journey in learning how to have tough conversations with his patients…a journey he began after many years of practice.
Therapeutic communication was not a part of my OT training, as it hasn’t been for many medical professionals. In some ways the medical hierarchy has been flattened as we all learn together.
But, we do need to get to work
Making live meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does.
The time to make creative, innovative, changes in our practices is now. The expectations of consumers and our fellow health professionals is changing rapidly. The bar is being raised and those who do not adjust will be left behind.
Two such changes, that Gawande articulates in his book, hold special resonance for OTs.
1.) We need to have hard conversations about what is meaningful to our patients.
As OTs we know this important. We learned in school that our goals need to be in line with our patients’ goals. The only problem is that we did not learn how to have these conversations. And so, we have found the conversations difficult to have, whether because the subject is uncomfortable or simply because it is extremely difficult to have efficient conversations that cut the core of the matter. I never learned a script for that.
Gawande offers the 4 clarifying questions that he asks of his patients. Maybe they can be a starting point for us, too?
Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same:
• What is your understanding of the situation and its potential outcomes?
• What are your fears and what are your hopes?
• What are the trade-offs you are willing to make and not willing to make?
• What is the course of action that best serves this understanding?
2.) We need to articulate the actual chances that our treatment will help.
I cried on multiple occasions during this book, but the saddest part for me was this: Gawande talked about physicians prescribing debilitating, painful treatments at the end of life, without full transparency of what the likelihood was that the treatment would actually help. It most cases the chance was miniscule.
In any situation our patients deserve to know the research behind our treatments. Without this information it is not possible to make decisions about what course of treatment will help them accomplish their goals.
If you do not know the evidence behind you treatments, it is time to start researching. If there is no evidence, be part of the solution and contact a university about being part of trial.
We need to leverage the progress of other professionals
This world-renowned surgeon speaks about what he has learned from hospice nurses navigating tough conversations, palliative care workers helping people balance pain control with mental clarity, and from assisted living directors championing aging in place.
In the book you will find evidence that the innovative work being done in these fields is making a difference.
In OT, we also need to be paying close attention to emerging evidence in our sister fields and figure out how to leverage the good work being done.
It does all come down to meaning.
It is much harder to measure how much more worth people find in being alive than how many fewer drugs they depend on or how much longer they can live. But could anything matter more?
For OTs participating in occupations that give a person worth and meaning is central to our conception of health. For us, participation in meaningful occupations are not only an end goal, but also a means of healing.
This concept has always been central to us, though we have at times struggled with how to apply it our practices. But, the time has never been better to put meaningful occupation back at the center of our practice, as new conversations and emerging evidence from across the medical field gives our work more validation than ever.
I hope that some of you will have the time to sit down with this book. I would love to hear what your take-aways are. Please leave a comment or message me on Twitter to keep the conversation going.
However miserable the old system has been, we are all experts at it. We know the dance moves. You agree to become the patient, and I, the physician agree to fix you, whatever the improbability, the misery the damage, or the cost. With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices. We are going through a societal learning curve, one person at a time.