About a month ago my mother had a doctor's appointment because she was feeling fatigued. Actually, she had a cluster of symptoms. It was difficult even for the doctor to tell whether they were related or not. We went to the doctor's office for an exam and then, as directed, over the the lab to have blood drawn, then on to the hospital for a CAT scan.
The PA called the next day with the results. Inconclusive, she said, could we go back to the lab and have blood drawn again and then come to her office later that afternoon.
Thus began three weeks of diagnostic tests which ended with two days in the hospital, with apparently, little effect, except to lift her hemoglobin levels to within AMA standards.
That same week a friend gave me Atul Gawande's book and I read it in a weekend. It seemed to be tracking with my mother's life and raised so many issues for me about her health, her well-being, and the heart wrenching challenges of making quality of life and length of life decisions.
In this book, Gawande took me beyond the apparent concerns of aging such as daily living skills and socialization. He peers one step deeper into the soul to take a look at what makes life, at any age, but particularly toward the end, have a quality and a meaning.
I ponder how to best support my mom. I ponder what type of medical intervention is necessary. My mother has always been conscientious about her health. I have memories, when I could not have been more than four or five, of lying on the floor with her doing excerises to the Jack LaLane show on TV. She always ate well and exercised. The only medications she took were for short term issues.
It's a slippery slope," she'd warn me about medication. "You start on one, and then you need another one for the side effects and down you go," she would say. We didn't know she was being prophetic. After a minor heart attack she was prescribed a blood thinner. But the blood thinner caused irritation to her stomach lining so she was prescribed another medication to lower her stomach acid. And so it begins....
A friend just told me that when his brother, asked him to help with his mother's care, he learned that she was on seventeen medications. To me, that's absurd. I ponder the question, with each appointment and hospital stay, will this improve her quality of life?
Here's a few more things that Gawande is helping me think about.
If psychology is right and having purpose can be one of the most meaningful aspects of life, how do I help her continue to find purpose in her days when her functioning continues to be limited? And how do I have that conversation with a woman for whom purpose has always been husband and family? Her husband has passed, and her expansive family is without need of her participation (much).
"In 1998, a Harvard philosopher named Josiah Royce wrote a book with the title The Philosophy of Loyalty. Royce was not concerned with the trials of aging. But he was concerned with a puzzle that is fundamental to anyone contemplating his or her mortality.
"Royce wanted to understand why simply existing - why being merely housed and fed and safe and alive - seems empty and meaningless to us. What more is it that we need in order to feel that life is worthwhile?
"The answer, he believed, is that we all seek a cause beyond ourselves. This was, to him, an intrinsic human need. The cause could be large (family, country, principle) or small (a building project, the care of a pet). The important thing was that in ascribing value to the cause and seeing it as worth making sacrifices for, we give our lives meaning."
My mother has, to date, enjoyed exercise class and Bible study and her weekly routine and housekeeping. But as her capacity for activity decreases, can I help her to define her purpose?
My mother likes her routine at least as much as the next senior. She likes to be in control of what and when she eats. She likes to go to sleep when she wants to and wake up when she wants to and have her hair cut and colored regularly. She has created a perfect square mile radius from her home that she drives which includes her church, the grocery store, her physician, her hair salon and her exercise club. It works. But lately she's been asking me to take her to doctor's appointments. She doesn't always understand everything they tell her.
Gawande points out our inherent dependence on others and that the amount of freedom you have in your life is not the measure of the worth of your life. And yet, he says...
"The late, great philosopher Ronald Dworkin recognized that there is a second, more compelling sense of autonomy. Whatever the limits and travails we face, we want to retain the autonomy - the freedom - to be the authors of our lives. This is the very marrow of being human. As Dworkin wrote in his ...essay on the subject, 'The value of autonomy...lies in the scheme of responsibility it creates: autonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own lives rather than be led along them, so that each of us can be, to the extend such a scheme of rights can make this possible, what he has made of himself.'
"All we ask," suggests Gawande, " is to be allowed to remain the writers of our own story."
But there have to be compromises. Yes, mom can still make her own doctor's appointments, but I can't twist my schedule around to fit the doctors' schedules. Instead, I give her a list of dates that I am available (much easier that a list of dates that I am not available), and we communicate. As best we can. The challenge that I see is to allow us both to have our autonomy as much as possible as we work out this new interdependent normal.
Safety V Quality
What is the balance, I ask daily, of safety and happiness for my mom? Perhaps she would be safer in an independent living situation where people kept and eye on her and she could make choices about cooking and socializing that were more accessible to her. But would she be happy? Gawande says "so this is the way it unfolds...our elderly are left with 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."
At what point would that be my mom's choice? Would it ever be her choice? And how do we make decisions that balance safety concerns with quality of life issues?
Moments and Memories
The quality of life piece doesn't have to be complicated. Most seniors, marketing aside, aren't looking for exotic trips and entrepreneurial opportunities. "As our time winds down," Gawande says, "we all seek comfort in simple pleasures - companionship, everyday routines, the taste of good food, the warmths of sunlight on our faces. We become less interested in the rewards of achieving and accumulating, and more interested in the rewards of simply being. 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 feel meaningful and worthwhile."
Maybe that's why I see $5 checks written out to the March of Dimes, or a cancer foundation when I balance her checkbook. She wants to feel like she is still contributing.
People with serious illnesses, he says, have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars....the question...is.. how can we build a health care system that will actually help people achieve what's most important to them at the end of their lives?"
So, given the realities of the health care system that we have, and the opportunities that medicare affords my mother to access that health care system, the question I ponder is, what will be the best way to keep it all in balance? To assure that she has the assistance her body needs, without over taxing her mind and spirit in the process?
I was speaking to my mom's PA at one appointment about these complexities and she looked at me and said, "I know. I don't envy you."
Atul Gawande, thank you for your honest and soul-filled exploration of these questions for which we have no answers; for which we must go courageously forward and invent solutions, holding our hearts and those of our loved ones in our very clumsy and ill-equipped hands.