My cancer diagnosis was not a surprise to me, I have watched almost every female in my maternal family die of it. I knew what I wanted and found an oncologist who listened to my story, my wishes, my fears and concerns. Together we developed Plan A that I felt comfortable trying and Plan B in place in case Plan A didn’t work.
However my GYN was livid because Plan A was not the medically accepted treatment, the Gold Standard of Care. She actually screamed at me over the phone telling me that I was being foolish and implying I was not capable of understanding what I was choosing. Before I told her she was no longer my GYN, I offered to take her to visit my mother, grandmother, aunt, and two cousins who had done it her way. They are all in the cemetery.
Unlike many of your colleagues, you know that patients are more than just a diseased body part sitting in the chair across from you. Thank you for that acknowledgment.
Thank you for sharing this. I’m so sorry for all the loss your family has been through, and I hate that you were spoken to that way.
Patients deserve honesty about the evidence, but they also deserve to be heard as whole people with their own history, fears, and goals. It sounds like you found the kind of oncologist we all should try to be.
"Doc, you're the doctor" can sound, from the outside, like a retreat from autonomy. I think it may be something more precise: a patient asking to borrow the physician's practiced imagination of consequences until his own can catch up.
Shared decision-making often assumes the patient already has preferences waiting to be uncovered. But in oncology, especially at the beginning, the future may not yet be imaginable enough for preference to exist. A PET scan, lymph node biopsy, surgery or radiation, and behind all of it cure, decline, time with the people he loves: these are not neutral options on a table. They are fragments of a life he has not yet learned how to picture.
So the task is not simply to ask, "What do you want?" It is to help the patient reach the point where wanting becomes possible. A recommendation, offered carefully, is not the opposite of autonomy. It can be a temporary scaffold for it: here is the path I would choose from what I know medically and what I am beginning to understand about you, and we can keep revising it as your own sense of the future becomes clearer.
That may be why your patient's sentence matters so much. He was not asking to disappear from the decision. He was asking not to be left alone inside a future medicine had just made frighteningly large.
This is all so true and you state perfectly how hard it is to balance.
I felt my oncologist was arrogant when he said he could perform any type of surgery I wanted and he was pushing me to take part in a clinical study where the choice was randomized. I didn’t particularly like that and opted out because there was no monetary compensation and I planned to move out of the area which made study follow-ups difficult.
My urologist made me feel like it was entirely on me to make decisions about procedures to save my blocked kidney. The delay in deciding meant I had fewer options and led to the decision to do nothing. I’m pretty sure my oncologist would have pushed for more invasive procedures if I hadn’t moved away.
Sounds like those conversations could have been better informed and more focused on your goals. These are life-altering decisions that shouldn’t have to be made on the spot either.
I really loved this. The line about watching a patient’s face as carefully as reading their scan was brilliant. Such an important reminder that good medicine is about understanding the person, not just the disease.
This is such a critically-important topic so first of all thank you for the nuanced perspective you bring with your analysis and questions.
For a real partnership to exist between doctor and patient I believe the patient needs to sense empathy from their doctor so they feel it’s “safe” to open up, maybe even to themselves for the first time.
It takes a certain personality, a willingness by the doctor, to see beyond the numbers and read the patient – not just what they say but how they say it. Then the shared decision model can work. Too often it's a one-sided presentation by the doctor with not much collaborative vibe.
So just by you telling your patient I hear you sends a signal that you actually do want to collaborate with them.
Cancer is as complex as the people it impacts. I imagine it’s hard to get to know someone so quickly under those circumstances and come up with a plan. I was in a grey zone for chemotherapy. Sometimes having options is both a blessing and a difficult place to be.
It’s good you’re looking at all the angles and from all sides. Yes indeed, people and patients are different and if you have this psychological insight into what they want (or don’t), you’re ahead of many peers. There is a place for options and there is a place for decisions when people ask for it. I think some decisions could be made at a later time by the patient vs the first meeting after diagnosis. That may give them some time to actually weigh the options, or even determine if they want to carry the responsibility of a decision or prefer to leave it to the doctor. I have met both types of patients.
Yes — very important point. If I get the sense that a patient or family needs more time to think things through, I always give them that option. We can set up a phone call, visit or additional consultation time if needed. Also, a good time to set up 2nd opinions (which we assist with as well).
My cancer diagnosis was not a surprise to me, I have watched almost every female in my maternal family die of it. I knew what I wanted and found an oncologist who listened to my story, my wishes, my fears and concerns. Together we developed Plan A that I felt comfortable trying and Plan B in place in case Plan A didn’t work.
However my GYN was livid because Plan A was not the medically accepted treatment, the Gold Standard of Care. She actually screamed at me over the phone telling me that I was being foolish and implying I was not capable of understanding what I was choosing. Before I told her she was no longer my GYN, I offered to take her to visit my mother, grandmother, aunt, and two cousins who had done it her way. They are all in the cemetery.
Unlike many of your colleagues, you know that patients are more than just a diseased body part sitting in the chair across from you. Thank you for that acknowledgment.
Thank you for sharing this. I’m so sorry for all the loss your family has been through, and I hate that you were spoken to that way.
Patients deserve honesty about the evidence, but they also deserve to be heard as whole people with their own history, fears, and goals. It sounds like you found the kind of oncologist we all should try to be.
"Doc, you're the doctor" can sound, from the outside, like a retreat from autonomy. I think it may be something more precise: a patient asking to borrow the physician's practiced imagination of consequences until his own can catch up.
Shared decision-making often assumes the patient already has preferences waiting to be uncovered. But in oncology, especially at the beginning, the future may not yet be imaginable enough for preference to exist. A PET scan, lymph node biopsy, surgery or radiation, and behind all of it cure, decline, time with the people he loves: these are not neutral options on a table. They are fragments of a life he has not yet learned how to picture.
So the task is not simply to ask, "What do you want?" It is to help the patient reach the point where wanting becomes possible. A recommendation, offered carefully, is not the opposite of autonomy. It can be a temporary scaffold for it: here is the path I would choose from what I know medically and what I am beginning to understand about you, and we can keep revising it as your own sense of the future becomes clearer.
That may be why your patient's sentence matters so much. He was not asking to disappear from the decision. He was asking not to be left alone inside a future medicine had just made frighteningly large.
Thank goodness you understand how important listening to the patient and concerns are. Many times, just as important as any treatment suggestions
Absolutely
This is all so true and you state perfectly how hard it is to balance.
I felt my oncologist was arrogant when he said he could perform any type of surgery I wanted and he was pushing me to take part in a clinical study where the choice was randomized. I didn’t particularly like that and opted out because there was no monetary compensation and I planned to move out of the area which made study follow-ups difficult.
My urologist made me feel like it was entirely on me to make decisions about procedures to save my blocked kidney. The delay in deciding meant I had fewer options and led to the decision to do nothing. I’m pretty sure my oncologist would have pushed for more invasive procedures if I hadn’t moved away.
Sounds like those conversations could have been better informed and more focused on your goals. These are life-altering decisions that shouldn’t have to be made on the spot either.
I really loved this. The line about watching a patient’s face as carefully as reading their scan was brilliant. Such an important reminder that good medicine is about understanding the person, not just the disease.
This is such a critically-important topic so first of all thank you for the nuanced perspective you bring with your analysis and questions.
For a real partnership to exist between doctor and patient I believe the patient needs to sense empathy from their doctor so they feel it’s “safe” to open up, maybe even to themselves for the first time.
It takes a certain personality, a willingness by the doctor, to see beyond the numbers and read the patient – not just what they say but how they say it. Then the shared decision model can work. Too often it's a one-sided presentation by the doctor with not much collaborative vibe.
So just by you telling your patient I hear you sends a signal that you actually do want to collaborate with them.
Cancer is as complex as the people it impacts. I imagine it’s hard to get to know someone so quickly under those circumstances and come up with a plan. I was in a grey zone for chemotherapy. Sometimes having options is both a blessing and a difficult place to be.
It’s good you’re looking at all the angles and from all sides. Yes indeed, people and patients are different and if you have this psychological insight into what they want (or don’t), you’re ahead of many peers. There is a place for options and there is a place for decisions when people ask for it. I think some decisions could be made at a later time by the patient vs the first meeting after diagnosis. That may give them some time to actually weigh the options, or even determine if they want to carry the responsibility of a decision or prefer to leave it to the doctor. I have met both types of patients.
Yes — very important point. If I get the sense that a patient or family needs more time to think things through, I always give them that option. We can set up a phone call, visit or additional consultation time if needed. Also, a good time to set up 2nd opinions (which we assist with as well).