How Direct Should a Doctor be about a Diagnosis?
We were never told Brad was dying. He was diagnosed with a rare form of terminal kidney cancer, but his doctors never directly told us he was dying.
And according to an unofficial Instagram poll, we are not alone.
We knew he would die someday in the way we knew we would all die someday. We also knew that there was a good chance that his someday would be sooner than we wanted. But when Brad was actively dying (which was shortly after his diagnosis), we were never told.
Instead we were told to have surgery to reduce the tumor burden
And then radiation to slow the cancer
And then immunotherapy to keep it from spreading
And then more radiation
And then and then and then
And then when it all stopped working, his oncologist called and said they were ordering a new drug.
At this point, Brad was barely lucid, sleeping most of the day, and couldn’t go to the bathroom without my help. At this point, he was days away from dying.
Looking back now, of course he was dying. And if it weren’t for a friend of ours, who made the brave decision to tell me Brad was dying, I would have ordered the other drug and kept hanging on to hope.
But the time for hope was over. In fact, if we had a clearer picture of reality, we would have had the choice to do things differently.
Maybe we would have refused the surgery that ended up causing his cancer to spread.
Maybe we would have opted for a treatment with fewer side effects.
Maybe we would have called palliative care sooner to better focus on pain management.
Maybe we would have asked for in-home care, giving me the chance to be Brad’s wife and not his caretaker.
Maybe Brad would have written letters or recorded videos or told us what to do when he was gone.
Maybe I would have given friends a chance to say goodbye and still had time in the end for just the two of us.
Maybe I would have spent less time researching and more time being present.
Maybe we would have written a valid will.
Maybe we would have had the conversations we were too afraid to have.
Maybe we would have done none of it. But we should have had the choice.
So Why aren’t doctors direct with us when it comes to a terminal diagnosis?
Because it’s uncomfortable?
Because they aren’t trained to?
Because every timeline is different?
Because their focus is on saving lives?
Because they want to hold on to hope?
There are so many reasons, I’m sure (some even valid). But here are the consequences of not directly telling patients about the reality of their diagnosis:
They think there is time. Time for conversations, time to get affairs in order, time for everything.
They pursue treatments that don’t actually prolong their life - and often with horrific side effects
They are left with regrets because they were unable to prepare for their final days
They don’t have the space to make necessary decisions for themselves or their loved ones
They aren’t given a choice to decide what’s more important: quantity of days or quality of days
Brad had 100 days to live from diagnosis to death. If we had known that, we all might have done things differently. Brad might have forgone treatment and spent his days with friends and family and his nights writing his book. I might have soaked up every moment of our time instead of constantly trying to find the next life-saving treatment. His family might have fought for more time together.
But without a realistic view of the situation, we never had a fair shot at prioritizing what mattered in the end.
I understand the need to hold on to hope above all else. That’s what our brains are naturally wired to do. Brad and I truly thought we would be the 1% that made it out alive. Even if the doctors had been upfront and told us “he will most likely die in 100 days” (which of course they can’t know for sure), we still would have held on to the idea that we would defy the odds.
But that would have been our choice with the information we were given.
As a friend once said, “It’s the physician’s job to tell me the truth. It’s my job to decide how to feel about it.”
It ‘s the doctor’s job to give us the facts. we choose what to do with those facts.
Maybe we choose the most aggressive treatment
Maybe we choose palliative care or hospice
Maybe we choose to live in denial
The important thing is that we be allowed to choose. And without doctors initiating that conversation, we are often stripped of that choice.
The truth is, many (most?) doctors don’t even open the door to the conversation. So the job lands on us: the patients, the caregivers, the family members, the grievers.
It is on us to advocate for the choice.
So what can you do if faced with a terminal diagnosis?
Be a “difficult” patient. Take up time. Ask questions. Demand the conversation.
Ask for palliative care immediately. Their job is to provide comfort, whether you’re in treatment or not. Don’t wait until the end to add them to your team. In my opinion, they - along with hospice - are more equipped to talk about what to expect.
Normalize hard conversations. The more we as a society talk about death, the more equipped we are to initiate and receive the conversation. And maybe this will trickle into the medical system as well.
Be direct with what you want. It’s okay if you don’t want the statistics or if you want to blindly trust your doctor. Be direct in what you want after making the choice that’s best for you and your family.
Have the freedom to change your mind. New information presents new options. Remember, you don’t have to stick to the same path.
Hold on to hope. Because it does matter and it does help get us through. And you may just be the one to defy the odds.
Want to hear more? Join the Forced Joy Club, where one member talks about her experience with doctors withholding information and the many complexities surrounding this topic.