Do You Understand your Prognosis
Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work
AUGUST 09, 2017
I was so glad to see this piece by Heather Millar from WebMD. It is a difficult and painful and charged topic, one that I struggle with weekly as I talk to many women. Of course miracles sometimes happen (but, remember that they would not be miracles if they were frequent), and of course hope is vital for us all. But I also believe that it is vital that we understand our situation in a realistic (and hopeful) way. To use the old cliche, it often is a time to hope for the best and prepare for the worst.
Let me give you two examples that have happened in the last couple of weeks. One is a woman who is completing adjuvant therapy for breast cancer. She does not have the earliest possible variety, but she most certainly has a cancer that may well be cured by the treatment she is receiving. She is convinced that the cancer will quickly recur and she will die. Nothing reassures her. Of course, in Cancer World. we know that no one gets a promise, and it is unethical and incorrect to make completely reassuring (as in, of course the cancer won't kill you) statements no matter what the situation. In her case, it would serve her much better to be authentically hopeful, to move forward with her life as though she will stay well, and to try to push back her terrors. I hope that time will help her with this strategy.
On the other end of the spectrum, I spoke with a woman who does have metastatic disease. Although her doctor has been painfully honest with her re the likely duration, she is looking for more reassurance that she can live many years. How wonderful it would be to be able to give her what she wants. The reality, unfortunately, is that she may do way better than her doctor has suggested, but it would be living in complete denial to count on that outcome.My belief is that she would be best served by moving forward with hopefulness, but by considering all major decisions through two lenses: the maybe I will live a very long time one, and the maybe my life will be shorter than I hope alternative.
No one every knows how long someone will live. In Cancer World, it comes down to how sensitive the cancer cells are to the drugs being used. We can never predict with certainty how effective any one treatment will be. I have worked with too many families who were taken unaware by the end, who somehow believed that life was going to continue for a long time when the doctors well knew the unlikelihood of that scenario. Their grief and crisis was worse because of the shock. Had they been more honestly informed and had better understood what was happening, it is likely that everyone could have been a bit better prepared. Patients and their families deserve the truth. Of course they also deserve not to know if that is their frankly stated choice--although my caveat here is that it behooves the doctor to be certain that both the patient and the family share this perspective. They may not.
From Ms. Millar:
Do You Really Understand Your Prognosis?
My 35-year-old stepdaughter, a postpartum maternity nurse, says that when patients ask her what the medical outcome of a situation will be, she’s been taught to respond with, “It depends.”
I thought of that answer this week as I was reading this excellent project about patient expectations produced by Kaiser Health News and USA Today.
In an era when there are ever more medical options, and when cancer treatments have become ever more personalized and complicated, it turns out that it’s difficult for large numbers of patients to really understand how serious their cancer is, what exactly their treatment is, and what the odds of success are.
For instance, the project points out, a 2016 study in the Journal of Clinical Oncology found that only 5 percent of cancer patients with less than six months to live had an accurate understanding of how serious their cancer was.