P R O G N O S I S - DOCTOR, HOW LONG DO I HAVE LEFT TO LIVE?

“Patients and their families will forgive you for making a wrong , but will rarely forgive you for wrong prognosis.”   -Albert R . Lam

During my many years of gastroenterology practice, I have faced this question repeatedly, whenever I made a diagnosis of cancer. But before this question, I was almost always requested by their families not to tell the patient the diagnosis.

Even though I was aware of a survey results, which was done in 1961 among doctors, revealing that 90% of them preferred not to tell a patient of a cancer diagnosis, I strongly disagree with this idea. I believe this will be lying and dishonest  behavior. It will destroy the doctor – patient relationship and trust. After all, the patient is my patient, not the family members. If I lie to the patient, then how can I order further testing, intervention and treatments and ask him/ her to consent, without the patient knowing what is wrong with them?

At the beginning it was very difficult and uncomfortable for me, not knowing how to tell the patient a deadly diagnosis. I always wandered why, during my training  in Turkey and in the USA, nobody ever taught us anything about this kind of difficult and stressful conversations in medicine?

I learned from my mistakes and experiences that no patient should ever be told straight out that he or she has cancer without first psychologically preparing them. Their hope and fighting spirit should never be taken away from them. I usually say, “we have taken some biopsies and done some tests from a growth in your colon. The results will come back in few days. You need to prepare yourself for the good news and for the bad news. If the news comes back good, you don’t have to worry but if the news is bad, we will handle it together.”

This works best as I know that as humans, we tend to dwell on the negative and prepare ourselves for the worst. So that when the patient hears the bad news, they are ready for it and are no longer shocked.

At the beginning I also struggled as to how to answer patients’ questions about their prognosis. My experience taught me that prognostication of a disease is more of an art  than science and statistics. We are all different, we have different genetic makeups and immune reactions. As a doctor, I have always tried to give my patients hope as well as kindle their fighting spirit. I finally knew what to tell my patients, when they asked me a question about their prognosis. I would say, “only God knows, we are all different, we respond differently to diseases and treatments. There is always hope and miracles. There is a lot of research going on. You never know what tomorrow will bring.”

Patients always express their concern about prognosis in different ways. I could summarize them as follows:

-          Doctor, don’t tell me when I am going to die.

-          I don’t know anything about my illness, how can I decide what to do?

-          I am in a vulnerable state of mind, I can’t make an objective decision.

-          I don’t want to know the details about my disease. You are my doctor, I trust you. You make the decisions for me.

-          Death is inevitable, I accept my faith but I don’t want to suffer.

-          Information on the internet is abundant but it is very confusing, please guide me through.

I believe and as I see it, sometimes in life, knowing more serves us less. I understand when patients say, ”I don’t want to know all the details about my illness.”