by Susan Karol Martel, Ed.M
If I could have simply written the following headline, I would have: “Be Sure To Watch the PBS Special “Being Mortal” which originally aired Tuesday evening Feb. 10. But newspapers are about articles, not headlines. So instead, I’ll tell you why the show’s message is vital to us all. “Being Mortal” is based on Atul Gawande’s book of the same title, number one on the New York Times Best Sellers Lists in both nonfiction and science.
End of life discussions are difficult for all of us. “Being Mortal”s focus is on the difficulty doctors have around these discussions with their patients. After all, a doctor’s goal is to save lives. But there is a point in time when quality of life rather than prolonging life becomes the most sought-after goal. Throughout the special, we shadow several doctors working with four patients and their families in navigating this rocky terrain.
These calculations – when to discontinue treatment because it’s not working, when to take a chance on trials or treatments where the effects could weaken or sicken patients further or when to take the risk that the patient might fall within the percentages of having a successful outcome, whatever that might mean, are crucial.
These calculations are more complicated than diagnosing a cancer or other life threatening illness. What goes on in a physician’s conscious and unconscious that makes it uncomfortable for her to discuss our odds in a way that could affect our personal choice making?
Physicians and training institutions are becoming increasingly aware of how important it is to train doctors in the sensitivities surrounding end of life and quality of life discussions. For the rest of us, it is difficult enough to talk to our parents or someone we love about a life care directive, which through a series of questions, asks “the patient” or, more ideally, the well person, what kinds of treatments to prolong life will they or won’t they accept at crucial junctures in an illness or accident.
I have had my own experiences with well-meaning doctors and end of life issues. My almost 95-year-old mother became paranoid, was hallucinating and, in general, wasn’t herself. She was already in the medical care section of her life care retirement community. That was her choice because she was, upon her own admission, “slowing down,”which meant she no longer traveled above 10 miles per hour with the support of her snazzy, fire engine red walker.
We had no idea that she was in the process of dying. Her longtime diagnosis of bipolar disorder complicated our seeing through this haze. By her symptoms we assumed that she needed psychiatric treatment and sent her to a psychiatric hospital for treatment. This was an excruciating process for all involved, most of all, my mother.
The last thing she needed was to feel institutionalized at this point in her life in the name of our trying to get her the best care possible. We went through psychotropic medication after medication along with their ups and downs. Nothing made any difference. This continued for what seemed like an eternity until one day a nurse took me aside. Gently, she said, “Ms. Martel, there really isn’t anything we can do here for your mother. Your mother is in the process of dying.”
Other than this single nurse, none of the doctors or nurses who saw her on a regular basis, including those in the psychiatric facility suggested this to be a possibility. One might say, well after all, she was 95. How much longer was she going to live? But my mother was quite vital up until shortly before this point, never looked her age, always well dressed, wearing bright lipstick and make-up until the very end. Having lived with her mental illness my whole life, it was easy for me to believe that she was having yet another bipolar episode.
During one of my daily visits prior to her psychiatric hospitalization, she told me, “Daddy just went down the hall. He’s looking for you.” I told her that “Daddy” had died many years ago and that she was mistaken. Had I known what I know now, I may have just nodded and smiled or said simply “OK,”understanding that, under other circumstances, this would have been an indication that she was in between worlds.
How horrible it felt that I had put her through an institutionalization during this final chapter in her life after she had spent a good part of her life fighting to stay away from one. In a matter of days after the nurse spoke to me candidly, we brought her back to her life care community, called in hospice for an evaluation and, sure enough, hospice agreed that what my mother needed now was palliative care.
She died shortly thereafter. She had stopped applying lipstick prior to entering the psychiatric hospital. I should have known. One day, hours before her death, I helped her into her bed. After lying down, she suddenly raised herself upright, her arms straight out in front of her as if preparing to sleep walk. She looked at me and in an unusually strong voice said: “This is not good.” These were her last words. She lay back down, lowering her arms at her sides and died hours afterwards.
How was it that her doctors didn’t recognize her state? Maybe they too were confused by her mental condition, though she had been stable for several years prior. Did they normally recognize these end stages with their other patients? Did they have difficulty with discussions surrounding death even though they were in the section of a life care community where death was a regular occurrence?
One of the most affecting experiences I’ve had in dealing with end- of-life patients in my private practice was with a man I’ll call Sam. Sam was as tall, robust and masculine as any boomer baby could possibly be, but Sam had an incurable cancer and knew that any treatments he would continue to undergo would be on the chance that they might prolong his life.
His cancer had affected his brain, balance and speech. Nevertheless, after a referral from one of his doctors, Sam made an appointment to interview me to determine if we would make a good therapeutic partnership.
He brought with him a small box containing strips of paper, each containing a few scribbled words. The words were either names of prominent persons in history, psychology, spirituality or philosophy, some book titles, music, place names and such. He gave me the box and made it clear he wanted me to read out loud what was written on each scrap of paper. It was clear that he was looking for my reaction to determine if we were emotionally and philosophically connected.
In that way, we both determined that we were a good match. And what ensued in therapy to the extent that Sam could use language given his aphasia, to the extent to which he could sequence his thoughts due to memory lapses, and to the extent to which I could interpret his words and body language – was dealing with balancing out the hopes of new treatments with the potential to prolong a quality of life.
In order to do this as well as humanly possible, we found our way to dealing with what was important to him and how continued treatments might affect that.
Luckily his doctors understood his wishes and were forthright in their communications with him and his family regarding his prognosis and treatment options. Sam kept coming to my office, and, when he was no longer able, I went to his home. What he was gaining from our visits was not always obvious to me. It was not apparent that for one session to the next he remembered or integrated what we had spoken about.
So I asked him. In one unusually cogent moment, he told me that our meetings provided him an opportunity to make his thoughts and feelings more concrete; they gave him a space and a place to be seen without his worrying about taking care of those worrying over his well being, or those well meaning friends and family members who lovingly catered to him at every moment trying to find more ways to make him comfortable.
Sam died peacefully; what was ultimately expected came unexpectedly, but only after he creatively prepared for the inevitable in his own way, in much the same way as he had lived.
It is always humbling and the highest privilege when someone comes for help and entrusts me with their deepest yearnings and vulnerabilities. As much as Sam believed that I was helping him, in my heart of hearts, I know that it was me who had gained from this highest of privileges – shepherding someone actively navigating their living moments until death. And do I accomplish this perfectly? Of course not. I’m constantly examining emotions that come up for me during treatment. This is a necessary part of any therapeutic practice. This can be especially thorny when working with clients whose lives are held in delicate balance.
But we all want this, don’t we? We want those with whom we instill our care to see us as more than a disease, an illness, a problem. We want them to see us within the context of our lives, how we have lived and how we can best achieve a quality of life in the beginning, middle and toward the inevitable end.