“Am I wrong to want treatment that I believe can keep me alive?” This question was posed in a recent men’s support group at Inspire Health. The inquirer is a feisty, energetic eighty-three year old man who had been told by his oncologist that he should take it easy and enjoy the rest of his life because it won’t last more than a year and a half. “ I am concerned about your quality of life for your remaining time” he was told. This had no appeal to my friend, “You let me worry about the quality of my life, I want to know what treatment is possible.” The result was that he was scheduled for radiation last Monday and is already feeling more comfortable and in less pain.
This led to an impassioned discussion amongst the group about ageism, oncologist pronouncements of life and death and the inevitable impact on the psychology of a patient to be told they are going to die. The first speaker had been told a year earlier of his predicted demise and so far seemed to be taking no notice at all. At Inspire Health two of the foundations of the healing journey are will to live and hope. Far too often patient’s hope is sapped by being given a terminal prognosis; will to live can easily be compromised by someone in a position of authority; in fact one of the key goals at Inspire Health is to help patients feel empowered to make their own decisions on their healing journey. Oncologists telling them they are going to die undermines that autonomy.
“It is like Voodoo medicine,” observed the psychologist in our group. He related the oncologist’s power to that of a witch doctor in Haiti who points the bone at an unfortunate target, who is then convinced he will die and does. Four of this group have been given death sentences of this kind yet beaten the odds. Each could recall the impact of the pronouncement and how important it had been for them to find support of a different kind. One shared a story from ten years ago when his oncologist had jabbed him with his finger and stated, “You do what I tell you or you will be dead in two years.” He tried not to smile at the memory of attending his oncologist’s funeral. (He had died a couple of years earlier after taking his own advice.)
One can understand the desire of the medical profession not to give false hope but using the appropriate language is so critical and one wonders how much consideration is given to this in training. For example one patient of Inspire Health had brain cancer and was told his cancer was terminal and he had little time to live. He was devastated but in his own research realized that there was a 5% chance of cure, not great odds but something to hold on to during his darkest hours. He believed there was a way for oncologists to be realistic while not removing hope. Every man who has passed through my support group has managed to overcome the odds given to him by his oncologist but each one suffered from the prediction.
One of the best examples of an oncologist taking a less aggressive attitude occurred when my mother was dying of cancer in Hammersmith Hospital. He had just told her that in his opinion future treatment would be palliative rather than curative. This was a shock as up until this time we had all assumed she would recover. I pulled him aside and asked him how long my mother would live. He replied, “ I am not God, I do not determine life and death.” When I told him that I had a brother in Canada who had a trip planned for August and wanted to see his mother before she died, he responded, “Tell him to come sooner rather and later, and definitely before the end of May.” I have always appreciated the gentle way he communicated his knowledge and insight, which proved so prescient – my mother died just before the end of May. If only all oncologists could be as gentle and caring, and perhaps letting go of the need to be the authority over life and death. It’s not what you say as much as how you say it.
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