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:
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.
Hospice and Caregiving Blog: Accepting Death
http://www.youtube.com/watch?v=FJomp47BliE
My grandfather had the best sense of humor when he was on his deathbed..and as hard as it was to see him like that, it was satisfying to know that he had such peace and tranquility within him that nothing could break his spirit or his knowledge that he had lived a fulfilling life that was chock full of love and happiness..
I hope that when my time comes that I can face my end with as much courage and comfort as he did..
I hold on to that, for this week I am going to see my brother who has just about to start chemo and radiation. He has had cascading health problems for a decade and this doesn't look good. My true test of love will be to allow him to go as he wishes and not how I want him to go.
I can understand accepting death from the standpoint of a terminal patient; barring a literal miracle, the knowledge that could potentially stop death will come too late for them, but I personally don't feel that the rest of us should just roll over and accept our fate.
In my experience, letting go of something, or someone you love is the ultimate lesson in powerlessness and humbleness. It was I who told my mother exactly the above mentioned: “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." Unflinchingly, I was fighting her fight. But it was in her last days when I realised and accepted her frailness and her wish to be without pain and in peace, that I finally found the strength to tell her that it is “okay to go”, it is “okay to stop fighting”, and that “I will be fine". She passed 1 day later.
In those moments it is not important what we want, or what we wish, but what this person needs and wishes and how we can help them to make that transition. We all need to learn to appreciate what was and be grateful and happy about that, instead of mourning what was or what could have been.
Don’t get me wrong it is not easy, and I still have days where I would give my right hand to have her here. But I’m learning, and I also have her legacy: Smile, Lala smile.
In their mind...giving into death, that is, choosing to die instead of live, is tantamount to suicide. Which en masse, they wholly reject as being both mentally and physically weak.
If most of us fully comprehended the meaning of this, perhaps we would enjoy each day more and learn to be kinder to one another. :-)
I dont understand some people and their need to keep a terminally ill human being from having a natural comfortable death
I've found that reading the newsletter from Compassionate Choices is helpful to me. I'm less than 2 years out of very aggressive (nasty stuff) treatment for trip-negative breast cancer. I'm glad I did it, but will NOT do it again. I've got my medical directive all ready as a result of having cancer. We do all die and I am for quality not quantity. The only true way to know what's on the other side of that door of death is to walk through it. I fear pain and lack of control over my choices far more than death. I believe NY now MUST talk to terminal patients about palliative care choices, etc. (due in large part to the work of Compassionate Choices).
For me, I'd want the kool-aid; but don't live in a state that allows it; so must rely on my DNR and Med. Directive.
Also, this piece is very appropriate for the midterm elections.