Atul Gawande's Aug. 2 article in The New Yorker, "Letting Go," addressed the difficulties that patients, families and physicians encounter around the transition from medical treatment against disease to palliative care focused solely on comfort and quality of life in the time remaining. Too often, this transition occurs too late. He touched on many of the psychological reasons for this and noted that our medical culture is weighted too much on the side of not giving up and too little on the side of wisely letting go when the time is right.
Although I trust that Dr. Gawande is aware of what I am about to say, his article did not discuss a key remedy to the obstacles of letting to -- namely, for patients to be supported in discussing the process of coming to terms with death long before their illness progresses to a terminal stage. When patients receive this support, I have found, they have a much easier time letting go instead of clinging to hope and pursuing medical treatments that prolong their suffering.
For many years I was the only clinical psychologist at the UCSF Comprehensive Cancer Center. Much of my work there involved patients with a poor prognosis. As part of a study, I interviewed 25 of these patients on the kind of thoughts, attitudes and experiences that were helping them come to terms with their prognosis. I must say, I was a bit blown away by the results, especially the fact that people appreciated the opportunity to talk about these issues because they were so often encouraged, by family members and friends, to be positive and hopeful instead of being encouraged and supported in being realistic and prepared. It seems that our culture's preoccupation with healing, a fighting spirit and control over physiological realities makes it all the more difficult for people to let go because they receive so little support for doing so. Each culture has its own repertoire of acceptable ways of facing death, and in our culture, it seems more acceptable to "rage against the dying of the light" and fight to the bitter end than to take stock of what your life has been about and to be at peace with your coming death.
The patients I interviewed had a poor prognosis but were not in a terminal stage; most of them could reasonably expect to live another year or two. Even so, they had begun to think about the meaning of their lives, their religious or spiritual beliefs, and what might comfort them as death approached. As I mentioned, they welcomed the opportunity to talk about these things. They were not in denial about their prognosis. Often, what seems to be denial on the outside is actually compliance with social norms and expectations; on the inside people are often very realistic. Countless times patients have told me about their tentative steps to broach the topic of their death with family and friends, only to be told, "Oh, don't think that way. You're much too obstinate for cancer to get you. Besides, there are lots of treatments to try. There's always hope that something better will come along."
In the study I mentioned, we wanted to learn what these patients had been thinking about that helped them feel less bad about their prognosis. We found six factors -- that is, thoughts, attitudes or experiences -- that were mentioned by at least 50 percent of the patients. These are discussed in my recent book, "Finding Your Way Through Cancer" (Celestial Arts, 2010). To mention them briefly here:
- Gratitude for the number of years the person had lived and for the positive life experiences they had enjoyed (mentioned by 84 percent);
- A sense of pride in one's accomplishments or in the inner qualities the person had developed over the years (80 percent);
- Religious faith or spirituality (72 percent);
- Making changes (in response to their cancer) in themselves or relationships to feel more fulfilled or at peace when death came (68 percent);
- Taking stock of one's legacy, especially the positive contribution they had made in the lives of others (60 percent); and
- Loving and being loved (52 percent).
I am not saying to anyone reading this that you should be as philosophical as these patients were or that you should advocate these factors to people you know or work with who are facing a life-threatening illness. I am only saying that this small sample of patients had been thinking about these things privately because they did not feel permitted or supported in saying these things out loud. It's a sad commentary on our culture, I believe. And it's something that can be changed, especially as we support people in facing up to things the way they are, which takes real courage, and in acknowledging that we are all meaning-creating creatures, even unto death.