Last summer I wrote a column about the importance of accurate communication when a family member or loved one is ill. It was centered about how things can get distorted and misinterpreted if care is not taken. I did not emphasize the physician’s role in that conversation, so a headline last week caught my eye.
Good communication when illness strikes must start with the physicians. Are they telling us what we need to know? A recent study published in Health Affairs suggests there is room for improvement. The lead researcher, Dr. Lisa Iezzoni, who is the director of the Morgan Institute for Health Policy at the Massachusetts General Hospital, found in the group of physicians surveyed, less than the truth had been offered in more than half of the cases. A picture that was too rosy was presented. Twenty percent of the doctors had not fully disclosed a mistake they had made because of fear of a lawsuit. For that latter statistic, it is worthy of note that 80% may have been forthcoming when an error had been made, although that conclusion may be suspect and was not a part of the paper.
There are several issues here and the shades of honesty can vary. One thing is certain: the patient and the family have every right to know the truth about their condition. Beyond that, it gets a little murky and, according to the study, data are often presented in a better light that medical science would warrant.
Sometimes the physician feels protective of the patient. If the news is really bad, it can be devastating. To make it sound less so . . . is that dishonest? Not necessarily but it can put the doctor on the thin ice of truth. Even disastrous results can be delivered in a compassionate way without pulling the rug of hope out from under everyone.
In my decades of critical care practice the task of delivering serious news was always present. Occasionally, a family would say, “If it’s cancer, don’t tell him! He will go to pieces.” I would never comply with that request, but rather explain to the family that I would present the information in a truthful but gentle way. For example, “This is a significant problem, this mass in your chest. We are going to talk about your treatment choices.” Often the patient, to the dismay of the family, would say, “It’s cancer, isn’t it?” If that is not answered honestly the patient will learn soon enough that either I lied or I don’t know what I am doing and no one wants a doctor like that.
Patients ask what they want to know and that information should be given compassionately. Sometimes the simple truth will be enough; other questions will come later. In giving the honest answer, it is vital to keep hope alive and it’s never right to make up a rosy picture that is very likely untrue. False hope is never justified. The right approach is to emphasize that every patient is different. I might say, “If you take a hundred patients just like you, probably half of them would have a major problem in the first year or so, but even after five years some of them might still be doing well. Every patient is different.” The patient may (or may not) realize that “problem” might mean death and “doing well” means still alive. They will ask that if they want to know. Then I might say, “We’re going to take the long view of this for you but one thing is absolutely certain: You will not be going through this alone; we will all be here for whatever you need.”
No physician with any compassion and understanding would ever say to a patient, “You have two months to live. Get your affairs in order.” No doctor can be that certain and it is a hurtful thing to say. When faced with a definite date hope goes right out the window. If things change for the worse, rather than ignoring the seriousness of the illness, other options are offered. “The results weren’t as favorable as we had hoped, but there are other things we can do. How do you feel about that?” Hope should always be nurtured but never exaggerated.
In the business of dying, the physician and allied personnel have a key role. In the last decades hospice care has been immeasurably helpful. They are most effective when honesty has been the only policy in discussing these issues with the patient and the family.
This day will come for us all. Everyone is entitled to the truth.
I had Chris Berry after a hemorragic brainstroke. in 2007. which left me half paralyzed. He and the staff at Lewis Gale were more than great! my problem now is trying to get my medical records from Walter Reed before it closes. I believe there was Military Medical Malpractice done to me as an embryo. I suspect my mother was prescribed antidepressants. My Dad who fought in Europe,and the Phillippines. Was then stationed to Japan, as part of the Army of Occupation,and rehabilitation. Our Whole family went there. Although, Medical Practice for Combatants is probably good. I don;t know except for cinema and news journal portrayal. Care for dependents;that is offered gratis as a perk to elicit enrollment. was probably very poor. I suspect the US Government, would try to minimiz the cost of this service. Specially if thhe consequences of the treaments were not yet known or understood or would not show until many years after. When our family returned stateside. my parents took me to theWalter Reed Military Hospital. Where Doctors seemed overtly interested in my heart. Where my primary Doctor had a parade of doctors come in to listen to it. My parents were told, That I needed a Heart Valve replacement. When my parents told me. I asked what were my odds of surviving the operation. They told me it was 50%;being young……I did not hesitate to say,”No!” Immediately the Doctor’s tune changed. H e started to tell me that a heart murmur was no big deal,and that a lot of people had them. He said,” to just not grow up to be a mountain climber,,,,,,,,,,,and live a regular life. I followed his advice…………and happily lived about as well as the next person………..except for asthma and a chronic case of lack of self-confidence. In my late jorties, I begin to feel a sense of urgency about my life. Although, bitten by the music bug in elementery School. and achieving some acclaim in Middle School. I thought this was going to be my path through life. I never gave up my “dayjob”. or my belief in education. or my “Dream”. I proceeded on my life full-speed ahead. until my left hip gave out, and started trying to slow me down. I did not! then at 57 my heart failed me quivering instead of beating steady. A Clot formed it went to the right hemisphere of my brain. Got caught on the curse of modern diet: Chloresterol plaque. The blood backed up and burst out of a spot in my viens. Flooding my right hemisphere of my electric neron brain tissue in salty fluid. Zap! went my brain and a lifetime of training my leftside muscles were gone. Now, I sit in a wheelchair. Try to stay on the internet. and listen to the radio. I see numerous adds on TV about antidepressants, mothers,and Damaged Children. I get rebuked by Lawyer after Lawyer ad. infinitum. About Statutes of Limitation. Then I hear on NPR that Walter Reed is closing. I suspect partially to erase any data that might hold one or more of the dozen antidepressant makers………….who might have collaborated with the US Government to trial test their wares on a dependent group i.e. my family. So, Do I trust the individual doctor? Can not say for sure. Do i trust Big Drug Companies and the US Government to protect their own interests, I decidedly Do! Yet…………what can I do? Send answers to: [email protected]
ps. 3 members of my family have had 9 cases of cancer……….no one knew what radiation could do. hell. Back then they drove DDT spraying trucks through the dependents residential area