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When I started practicing oncology, I was frequently asked by my patients, “What’s my prognosis, what can I expect?” At first, I was reluctant to tell the patient very much, especially when I knew the prognosis wasn’t good. I wanted to spare the patient the details of the inevitable outcome of his cancer, so I downplayed the truth. Some may call it sugarcoating the information. I just wanted to do anything I could to protect my patient from learning that not only didn’t we have a cure for his cancer, we didn’t even have a treatment to extend his life. The best we could do was to maybe improve the quality of his life for as long as possible.
Now, years later, not much has changed. Today, most patients with cancer never receive information from their physicians about their prognosis or even imminent death. According to a recent article in The Journal of the American Medical Association, not telling patients their prognosis leads to a worse quality of life for both patients and their caregivers.
Why are physicians so reluctant to give their patients truthful answers regarding their prognosis? When asked, most oncologists say that they don’t want to take away their patients’ hope of recovery. Others say they are afraid that if they tell them the truth, the patients will stop treatment. Some worry that their patients will leave and seek the advice of another physician.
Evidence to the Contrary
Recently, I read a study showing that hope is maintained when patients with advanced cancer are given truthful prognostic and treatment information, even when the news is bad. The study, performed at the VCU Massey Cancer Center, surveyed 27 patients with advanced cancers, including breast, lung, colon, and prostate malignancies, about their feelings regarding their cancer and their future. The researchers used the Herth Hope Index to assess the impact of giving the study participants accurate information about their prognosis.1
After reading the results of this study, I wondered why the practice of not being totally honest with our patients still exists, especially when other studies also support the Massey findings. Rather than fearing that our patients may give up and stop treatment if they knew the truth, I wondered if the real reason we avoid telling our patients the truth was because, as physicians, we can’t admit to ourselves that we can’t cure our patients or even extend their lives.
I know it was difficult for me to face that reality. Patients and their family members seek us out to solve their problem, and yet we are limited in our knowledge of how to do that. After several years in practice, I finally found the balance between telling my patients the truth about their prognosis and maintaining their hope. Finding that balance is what I have come to believe is the “art of medicine.”
Patients want us to be truthful, compassionate, and clear about their prognosis and want to know that we will be there with them every step of the way. Rather than taking away hope, being honest with our patients provides them with the necessary information to help them redefine hope, even if cure is not possible. ■
Dr. Winokur is a retiredoncologist based in Singer Island, Florida. He is the author of Grandfathered In: A Memoir, a book about finding balance between having a career in medicine and having a family.
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I don’t think anyone likes to be the bearer of bad news. But still, hope based on a lie is not hope. Hope is something you hold on to in spite of the odds.
This rings very true to me. At the point that my son was clearly needing to get his affairs in order and for his family’s sake to have conversations of closure….doctors danced around telling the truth in a way that even those with a fierce hope could understand. They were good caring people, but I feel they let us down in this regard largely due to their unwillingness to do the hard thing and find a way to assist him and his wife prepare for what they most certainly knew was imminent.
in my country hospital ask the money first before doing treatment
Dr. Laney Winoker, MD.
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Read this link and then listen to subsequent defenders and apologists of PPACA claim this is not the future of the entire country should the legislation stay as is:
http://www.weeklystandard.com/articles/about-those-death-panels_536874.html
This is scary stuff, and scary because the democrats are so hypocritical in their commentary and rhetoric. I know the Republicans do not care about the lower classes, and they basically admit it, but, the Democrats say they care and then act as they don’t.
I’d rather have someone try to push me down and say “you are useless to me” than have someone help me up and say “here you go” as they hold a knife behind their back with the other hand. That summarizes our “two party system” as it is in 2011.
Screw the administration.
I got reported to the hospital administration has being harsh, cold, and uncaring when I delivered the truth. We cannot win.
…telling them the truth. What a concept.
When I asked my Doc what I could expect I was told “We really don’t know, everyone is different.” I asked my GI Doc for a referal, got one to a top Radiological Oncologist, and although he gave me more info: he said basically the same thing. But added “Don’t skip your check-ups. It’s a rare cancer and we haven’t had enough patients to perform a comprehensive study.”
It’s my body, it’s my life, and I am basically alone in this. I need to know what I can expect. What kind of complications are likely and how to recognise them….. who do I call, and at what point?
Yes I am in remission, and was told that the remission probably won’t hold.
Nerve racking? You betcha.
One thing I did do was to fill out paperwork willing my body to our State University. A gift to Science. Maybe that will help somewhat in advancing care for those that come after me.
Meanwhile: one day at a time. Plan for the future anyway, what harm can that do? Have faith in God: that He will take care of me as He sees fit.
And try to keep up a positive attaitude……
Patients and their families want to hear the truth , the whole truth and nothing but the truth. There really is no other way ,
I don’t think Dr. Winokur has issues which he should quietly resolve in private. There is some innate goodness of people who go into oncology. At the time when most oncologists practicing today made the decision to become oncologists, there was no Chemotherapy Concession. Most of them probably had a personal life experience which created the calling to do battle against the great crab. At the time when people make their most important decisions in life, they are in the most idealistic period of their lives. And it’s not that all medical oncologists are bad people. It’s just that the system is rotten and still an impossible conflict of interest. There are so many ways for humans to rationalize their behavior. But the SYSTEM is rotten. The solution is to change the system.
My mother died of cancer this fall, quite suddenly. If her doctors had been honest with us, her family members, I would have spent more time with her during the months before she died. I believed her doctors, thought she was doing fine. I wanted to believe that, of course; and I had no reason not to. Now I feel sad and cheated.
Patients crave the truth. They may not like it, but they will reapect the doctor for being truthful. This doctor has issues which he should quietly resolve in private.
@ Barry
“Did it occur to the oncologist that if I only have a few weeks left, I might prefer to spend it with my family and friends rather than him and his staff?”
Isn’t that the question that Stanley is asking with this essay?
My sense is this issue – like many that appear to black and white from a hundred yards out – gets a little more complicated when you start treating people who are dying in front of your eyes.
I’m curious to know what oncologists think …
It’s about the money. Tens if not hundreds of thousands can be made in those desparate last months and weeks and days when patients and families give away their house, their pensions, savings plans, college funds, and max out their available credit to keep the treatment going. A gigantic, billion-dollar industry lives off that.
Suppose I have late stage cancer and there is nothing more that modern medicine can do for me. If my wife and I want to make an informed choice regarding further treatment, how can we do so without accurate and honest information? Did it occur to the oncologist that if I only have a few weeks left, I might prefer to spend it with my family and friends rather than him and his staff? We are all going to die of something eventually. It’s not a personal failure on your part if you’re out of options. Personally, I would also prefer to not spend money, either mine or someone else’s, on futile care though I recognize that doing more generates more income for providers. That’s another argument in favor of either bundled payments or at least a payment model that caps providers’ profits and, after a certain point, only reimburses them for their costs.
From a cultural standpoint, I hate the use of the term “give up” because it implies that to stop further treatment is somehow weak and cowardly. I don’t like the word “fight” or “fighter” either as that, in this context, tries to imply that the patient is brave and courageous. While a cancer diagnosis is especially tragic when it strikes at a young age, the vast majority of cancers are among the elderly. Lay it on the line and let us make an informed choice. If the oncologist can’t or won’t do that, bring in a palliative care specialist and let him or her do it for you.
Why, you ask? Fear and time, although I find many oncologists to become undertakers when they can not ring the chemo cash register.
I remember my wife’s adage about fighting her disease, “it’s 90% Faith and the Will to Live and 10% the Art (not science) of Medicine.”