Tuesday, September 4, 2007

Do You Want to Know Your Medical Prognosis?

When doctors don’t tell you the bad news, it can make life even harder. The author of this New York Times article (Nicholas A. Christakis, a physician and a professor of sociology at Harvard) makes the case that giving a terminally ill patient a realistic assessment of how long he/she has to live can be vitally important. It can give the patient time to take care of the practicalities, speak what needs to be said, and be in charge of end-of-life medical decisions. Doctors often fear that telling a patient he/she has two months to live will strip away the patient’s investment in life. Dr. Christaki writes, “It should only refocus attention on the quality of the patient’s life. Sometimes living life to its fullest requires knowledge of its finitude.”

I take a pretty hard line about this issue of don’t tell. I don’t think any medical person (or family member) has the right to censor my health reality, even in the name of kindness. Whether the news is about how much time I have or how much functionality I’ll have – I want to know. Even if I don’t want to know, I need to know. The labyrinth of life is tangled enough without false exits being offered. I want to walk it carrying whatever my load is.

Richard was aware of my need for complete and accurate information; and he had the same need. We discussed whether he would accompany me to appointments with specialists and decided that four ears were better than two. We asked questions from different perspectives and remembered responses the other sometimes forgot. We both found this to be a very useful form of partnering.

Prognoses of death or limitation are not the end. While the final certainty of loss is unavoidable as we age, with the truth as catalyst, who knows what new paths any one of us may create, even in the last moments of life. My pain brought me my dog, yoga, a few glowing embers of spirituality, and strangers who, surprisingly, became beloved allies.

What is your stance on the issue of to be told or not to be told?

Have you faced the situation of having to decide whether or not your partner should be told the medical truth? How did you handle it?


Anonymous said...

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Anonymous said...

I agree with you. However, there is another side to this issue. When my husband asked his specialist what his prognosis is (he has incurable respiratory disease and was deemed not a good candidate for surgery) she told him he probably has 3-4 years left. He is as active as he can be and makes a point of enjoying his life and making the most of it. However, this prognosis hangs over his head and, despite his best efforts, affects his outlook. His primary care physician, with whom he has a wonderful relationship, said he didn't agree with the other doctor's decision to quantify my husband's remaining time; it's an imprecise prognosis at best, and could be incorrect by many years. True, we mobilized and got our affairs in order, which was a good thing. But there are times when the decision to tell a patient his remaining time might warrant some thought.

Barbara Kivowitz said...

You make a very important point about the need for careful consideration before informing a patient about remaining time.

I think the doctor should have an initial conversation in which the patient has an opportunity to express his/her wishes about knowing; and a chance to explore how he/she would handle the information.

I also think the doctor needs to balance accuracy of prognosis with humility about not being able know the future for each individual.

I hope you and your husband have many active years together.

Anonymous said...

In all fairness, my husband insisted to the specialist that he wanted an unvarnished prognosis. His primary care physician, however, still disagrees (as do I) with her willingness to give him such a specific, seemingly definite, number of years left. A better answer, I think, would have been to tell him that it's very difficult to tell, that his disease could progress very quickly but also could remain stable for a relatively long time.

ohiluvnut said...

because of some pre-diagnosis troubles in our marriage, my wife has elected to place her metastatic brain cancer prognosis within a "confidentialiy zone" where I can no longer ask her doctors about her condition without her permission. Her right, I suppose to be so stoic and such a martyr and to choose not to share information with me or her family, but doesn't do much for creating an intimate or harmonious home life!!

Barbara Kivowitz said...

Ohiluvnut - your comment raises a very important issue. When illness enters into the relationship, it affects both people, deeply. Yet, it is the patient who controls choices about treatment and access to medical information. When that access is denied, both people are left alone with their fears and resentment. Is there room for some negotiation, I wonder, -- a few threads of data that can be shared, or a third party who could serve as a bridge? Your situation is indeed difficult. I hope you find ways to create some peaceful space for yourself.

elena said...

my husband has been diagnosed with liver cirrhosis compensated from hep b. it has been months time since he has been on medication and i still keep on praying for miracle to come and for him to be well. however liver cirrhosis is really a big thing hanging on our heads on a daily basis. at times it makes me want to shout just thinking of the worst that could befell us and i don't think i can handle having to hear a doctor say an approximation of his stay in my and our son's life..