Most people have a dramatic moment of realization when they learn about a family member’s mesothelioma diagnosis. Mine came years after I lost my father.
My parents sat me down at the dining room table to tell me about Dad’s diagnosis of stage IV mesothelioma. I suppose they were probably waiting for me to break down upon hearing the news. I didn’t break down or show much of a reaction at all. I had no idea what they were talking about and didn’t understand what the diagnosis meant. I was only 14, and mesothelioma was just a word.
I didn’t understand what his diagnosis really meant until I had lost him. I didn’t truly understand what mesothelioma was until I was an adult and doing research in college. Learning more about mesothelioma is important to me now as I reflect on my own experience with my father’s illness.
Growing into an adult without my father has made me step up for all those affected with the illness. My hopes are that someone else might find some benefit or comfort through my experience.
Breaking the News
Doctors struggle with breaking bad news to patients, just as patients struggle to break the news to their loved ones.
I didn’t realize it at the time, but my father displayed tremendous strength and courage in looking me in the eye and telling me what the doctors had told him about his health. I can only imagine the thought processes he underwent to reach that moment.
While every patient and family is different, doctors often rely on the same model as a foundation for the conversations about terminal illnesses with their patients and families.
Modeling the Conversation About Bad Medical News
Los Angeles Medical Center doctors Jeannie Han and Arthur Kagan suggest that honesty and directness should be emphasized when having conversations that introduce any diagnosis, especially when talking about serious illnesses such as mesothelioma.
Drs. Han and Kagan have 66 combined years of experience in radiation oncology, and they have broken terrible news to many families.
They claim experience doesn’t make the conversation any easier, but molding the conversation to suit the individual is important.
Choosing the Right Words
Conversations between family and patients should also use language everyone is familiar with because clear understanding is an essential part of the conversation.
The American Journal of Clinical Oncology in August 2012 published Han and Kagan’s editorial on breaking bad news.
“Asking patients to describe their understanding of the informant consent issues may help to avoid misinterpretation,” the editorial shows. “Confusion stemming from the physician’s use of medical jargon or euphemism is fertile ground for distrust and malpractice suits.”
Initial Goals for Delivering Bad Medical News
Dr. Michael Rabow, Harvard graduate and member of the Academy of Medical Educators at the University of California, San Francisco, has several goals for the initial conversation that introduce a diagnosis.
He directs a leading outpatient palliative care consultation program that allows him to combine patient care with tenderness. Rabow suggests that achieving these goals with your conversation with your family helps to ease the blow of news they might find devastating.
Some tips for conversations:
- Allow for emotional ventilation: It is important to allow your loved ones to freely express their emotions during the conversation. The news may be deeply disturbing for everyone and hiding emotions won’t help anything.
- Achieve common perception of the problem: Some of the medical portions of the conversation can be confusing for your loved ones. It is important to use this conversation to be clear about what the medical issues you are facing.
- Allow for basic information needs: Undoubtedly, your family is going to bombard you with a slew of questions. Addressing them clearly and to the best of your knowledge will help them gain understanding. Seeking answers to questions together can aid in understanding for everyone.
- Discuss future plans: While a care plan doesn’t necessarily need to be solid with the initial conversation, it is important to begin discussing your personal preferences in treatment approach and future goals you may have. Allowing people who love you know what your goals are can aid in the achievement of those goals.
- Minimize isolation: It is imperative to avoid isolation following the initial conversation. Hearing about serious news and spending time alone usually aren’t productive. Spending time together with your loved ones can make everyone feel better.
My father displayed tremendous courage through his trembling voice when he broke the news of his diagnosis to his youngest daughter.
I didn’t understand much of what he was saying; I just knew he was struggling for the right words. I am sure he was shielding much of the understanding from me in an attempt to spare my heart.
Now as an adult, I have a more profound understanding of the depth of that initial conversation, and the many talks we had after that. Having a family that is knowledgeable about your diagnosis and future plans is a valuable tool in an arsenal against mesothelioma and other serious diseases.