This cruel dilemma
© Dr. Rajas Deshpande
“You will die soon, you may want to prepare. You have maybe three years left” said my Professor to a patient with CBGD, a grave neurological diagnosis.
The elderly Canadian lady and her daughter broke down, screaming and hugging each other. Weak in such situations, I stood there trembling, trying to control tears. After a coffee and lots of water, the patient reassured her daughter: “It’s OK dear, the doctor has to see other patients too. Thank You, doc, for seeing us”. They left with the prescription. Besides being shattered, the daughter was visibly fuming at my Prof. I felt offended too by what he did..
After the OPD, I angrily asked my Prof: “Couldn’t you have made it softer? I’m sorry, but I thought that was quite blunt and rude”.
“It’s the law. You must tell the truth to the patient. And it is my experience that lesser the words used, better it is. They will suffer now but learn quicker to accept it.”
“I disagree sir. Does law presume that all patients are made up of the same scientific and logical mindset as robots? Some may be very emotional, sensitive, anxious, depressed, and in fact die early with such news. Not everyone wants to know the truth this way. You could have told her about just a suspicion now, and confirmed later when she would be better prepared to hear it”.
“Then she would have died every day till I confirmed it. Now she will not”. Said Prof., “And anyway, there’s always a question of legal aspects of ‘delaying’ the news”.
I didn’t sleep that night. I have always felt that patient’s life is never the same once a bad diagnosis is confirmed, so unless it is essential to specifically state it, (or the patient asks for it) the “death” part must be excluded from the first discussion (unless urgent/emergent measures are mandatory to prevent it). One cannot hide the truth, but then one should not take for granted patient’s sensitivity level/ emotional tolerance level.
Back in India.
Here, requests like “Please don’t tell the patient his / her diagnosis, he / she is very sensitive” are as common as rude children asking the “approximate time to you-know-what” in front of the patient.
This 24 year old lady living alone (fought with family, mom in another city) came with mild weakness in one leg. Examination was suspicious for some brain problem. MRI was advised. She went home after the MRI. I received an email report of her MRI that midnight. Huge tumor, likely cancerous. Restless, I went through a bad night again, angry about why such things happen and worried about how should I tell this to her.
Next day she came to OPD.
“Do you have any relative who can come over to discuss?” I asked.
“I had a break-up last week. So none. You can tell me”. She said, plain and dignified.
Fumbling carefully with language, I told her that she had a tumor in the brain, and may need operation. I carefully mentioned in passing that it may be cancerous in some patients.
Without a change in her expression, she asked “Can we do the surgery tomorrow? ”.
Stunned, I repeated details of her MRI, now more direct.
“Yes, I understand it might be cancer, I need a surgery, and I can die during the surgery. I will call my mom, I am ready for admission now”, she said plainly again.
She was operated a day later, by a Neurosurgeon colleague.
Her mom came over for surgery.
The biopsy was negative for malignancy.
She is now back to life, full swing, and on her last visit, showed me the steps of Zumba that she had recently learnt.
I wish I could dance like her. Life too.
I have not met another patient like her yet!
What is the best way to say bad news?
If the doc says it all, they are going to scare and worry themselves to sleepless nights and a disturbed life for a long time, whether literate or not.. Professional duties demand that one explains the truth in best possible and compassionate language. Knowledge of human nature teaches us that however “downplayed” you may convey the diagnosis, patient will think only of the worst (the very reason why doctors themselves make worst patients). If we don’t tell the real risks involved in the progression of that disease, patients will not take it seriously and continue to risk their lives, not investigate or neglect the suggested treatment. If we do tell, there is a feeling that the doc is “trying to extract” via tests etc. What helps here is the continuous “realtime” assessment of the patient’s nature, and finding the right relative balanced enough to confide in, with patient’s consent. Sometimes in patients who are overtly depressed and are at a suicidal risk, the doctor may have to withhold information (unless immediately lifesaving) for a while until a proper occasion.
In the west there mostly are “Conselling / Meeting rooms”, and a social worker, psychologist / counsellor present while gently breaking such news to the patient. Often in case of large / irate / violently oriented patients, there are security personnel guarding the room too. In India, the concept is evolving, and more needs to be discussed, considering a large number of “excessively emotional, illiterate, and often denial oriented” population which is also more superstitious, and avails of unrecognised alternative therapies even at the cost of their own life. Many doctors are equally sensitive /emotional, and I have seen colleagues who suffer patient’s bad news.
There is no doubt that the patient must be told the truth, but prediction of time to death (unless in emergencies where it is obvious) should be avoided. There are medical miracles. There are even Rabies cases who survived, cancers which didn’t progress as predicted, cured with treatments, there are even cases like Prof. Stephen Hawking, who have (productively) survived far beyond their predicted ALS death.
All said and done, the Doctor is not God.
Patient’s courage matters as much as their morale, in their survival. The doctor should guard both. One can only mention statistics in carefully chosen compassionate words. I also found it useful to tell the patient that “Come what may, I am in this battle on your side”.
May all doctors find their own peace with all the bad news that they must deal with. No one else will usually understand this trauma. There are thousands of doctors who die their patient’s death. Not everyone can express their agonies. This little article is for them.
© Dr. Rajas Deshpande