There is no prescribed timing for when to share difficult medical news. This can be as true for doctors with their patients as it is for patients with loved ones. There can be many reasons for withholding medical information, including doctors avoiding uncomfortable emotionally laden conversations or patients feeling a need to protect loved ones. Sometimes, it can be even more complicated than that.
In “Lying to My Mom,” an essay in the Journal of the American Medical Association (Sept. 20, 2023), Dr. Chris Feudtner talks about his rationale and ensuing anguish surrounding withholding medical information from his dying mother. In reflecting about his decision to lie, he explains, “The right time to tell my mom about the mass and the likely cancer had been never. I write this feeling like I’m confessing. Yet if what I did was a sin, one that admittedly still nettles my conscience, I am nonetheless at peace with the choice that I made. One of the things that life has taught me is that love and respect and beneficence often require trade-offs that defy straightforward rules, relying instead on judgment calls made by a conscience that can live with the consequences.”
Reading this article reminded me of a patient who decided not tell her adult children about a cancer diagnosis. At the time I was working as a medical humanist at a cancer center and would meet with patients after their doctor’s visit. I asked each patient a series of questions that included how they and their family were coping with the diagnosis. This patient candidly told me that she was anxious about her prospects of being cured but confessed that she didn’t want her children to worry so she had decided to not tell them until after completing treatment. Besides, she felt justified because they lived a long distance away and didn’t want them to feel pressured to travel.
I recall meeting with her at the time of a 6 month follow up visit. She was pleased with the success of the cancer treatments, had returned to work full-time and was engaged in normal social activities. She had told her children about what she had been through and that all was well. Their reaction was one of anger. They were adults and would have preferred to have been informed and given the opportunity to be supportive to both their mother and father. Traveling to see them should have been their choice.
At this visit the patient went on to say that her children told her they would now have difficulty trusting anything she would report about her health status. Even though her withholding was motivated by a desire to protect loved ones, it caused a rupture in their relationship.
For patients withholding medical information to protect loved ones, it’s important to consider unintended consequences. In this case and others, patients told me about instances of shielding loved ones from hearing bad news and resentments that followed for not being allowed to provide support. Through these experiences I’ve learned that open communication could minimize regrets for all concerned. The topic of protection is explored in SpeakSooner: A Patient’s Guide to Difficult Conversations.
Although I believe that every patient has the right to be informed and fully understand their health status, treatment options and prognosis, there may be exceptions. I realize that cultural factors can play a role in why families ask doctors not to disclose bad news to the patient. Of course, that would place a healthcare professional in an ethical dilemma. In Dr. Feudtner’s case he states, “Mom, I did my best to take good care of you. I trust you understand.”
Please share your thoughts about withholding medical information.