What a stupid question, right? How could someone like Bob accept treatment without knowing his diagnosis?
Well, there are multiple situations: the patient doesn’t want to know it, the patient doesn’t have the mental ability to understand it or the family interferes and agrees with the doctor what it is best for the patient. In the last case, you would think about a pediatric patient, but the situation I want to talk about refers to an adult patient- let’s call him Bob, totally capable of understanding his diagnosis.
So many times we forget that treating a patient also involves their loved ones and their core believes, their vision about life and death. The therapeutic act is complex and should be personalized for a better compliance. We should educate our patients to understand the concepts of healthcare, of life and death depending on healthcare. They should be informed that we use our skills to do our best for them, to know what our limits are and how we can assist them. If we sense a patient could develop a depression/ a nervous breakdown after receiving different treatments and finding himself in front of a terminal disease- a metastatic stage for example, we should offer him psychological support from other healthcare providers and never restrain the information he is entitled to.
Bob- his loved ones- the Doctor
Many times during our treatment- especially if it is something chronic or something that needs palliative care, the loved ones of our patient get involved and sometimes when we talk about cancer, the family finds out first about the diagnosis, even before the patient does. I know it seems unbelievable and it is against the medical ethics, but it is possible for this to happen, especially if it is about someone like Bob- an elderly patient with history of depression, with loved ones back home always showing up next to him when visiting his oncologist. As his doctor, you are obliged to be honest and ask Bob if he wants an open talk or if he wants you to talk only with his family about the disease because he may just refuse to know details about his cancer (he somehow suspects it as he often visits the oncologist), he may want to take the treatment and live the rest of his life without thinking about his health problem. It should be very clear that Bob has the right to trust you as his doctor, to be the first one to get the information about his diagnosis, the prognosis of his disease and to decide what he wants to do with the rest of his life.
Let’s not forget Bob’s family is also in shock and hurt, as the disease of a patient affects also the life of his loved ones. Bob’s family, because they love him, they want to protect Bob from suffering- this is a coping reaction, a negation of the reality by psychologically “postponing” the death of their loved one. Bob’s family think they diminish the suffering, the shock, the depression and all that comes with Bob finding out his days are counted because he has a terminal disease. But at some point, Bob will realize it because even if everybody tells him it will all be alright, he is feeling weaker day by day, his family visits him more often and their eyes get a little wet when he tells his grandson that next summer they will go fishing together. Bob gets it in the end, he feels the rage of being betrayed by his doctor and his family, but he may not call you out for stepping over the trust and respect you have promised him. Because it’s too late for another doctor appointment and he fells remorse for hurting his loved ones.
In the case the patient wants to know the status of their health, it’s not moral for us, as doctors, to avoid telling them the outcome or the harsh reality they have months to live. Sugarcoating Bob’s situation, saying there is no need to add the survival details in our healthcare if he doesn’t ask, it could be our own coping mechanism when we get attached to our patient, we are outsourced by our medical capabilities or… because death it may also be a burden for us.
As doctors, we all want to tell our patients it will be alright, we want to heal and comfort them, emotionally and physically, we want to diminish their state of despair in front of an imminent death or a threatening disease. We can’t do it all the time and sometimes we see Bob cases as a failure, as our failure as doctors. We have to understand it is never a failure if we inform Bob and we are totally transparent with the situation and what can be done, if we offer Bob a clear sense of reality to live the rest of his life with dignity and no pain, exactly in the terms he wishes to. Trust and respect can be performed also in these tragic therapeutic stories of a doctor-patient team and can offer Bob time to process his situation and say good-bye to his loved ones in peace.
Kidnapping Bob’s rights as a patient it is not acceptable and it makes us fail as doctors without even making a medical error!