Next week I am meeting with a group of oncology Fellows at Sloan-Kettering to talk about care of the metastatic breast cancer patient. I have many ideas of how I think patients and doctors can better be “partners in care.” I have thoughts about how patients can be better in their interactions but this particular session focuses on the physician side of it.
I will spend my time there emphasizing the things doctors can do in their future careers that will be most appreciated by their metastatic breast cancer patients. Having a supportive, educational partnership is essential.
I have pages and pages written on what I think makes a good oncologist but am not writing about them here yet. I really want to use today’s post as a forum to let you have input. Patients vary in what they want from their doctors. There isn’t necessarily a formula that will work every time. This is part of the message. It is important to find the right chemistry between a doctor and patient especially when you know this relationship will probably be taking you until the end of your life. Some oncologists start to distance themselves from their patients when they know they can no longer “fix” them. I am fortunate that mine are supportive. The balance between quality of life and quantity of it instantly becomes the metric after a diagnosis of incurable cancer. Everything is filtered through this lens.
I encourage you to comment on the post rather than email me. Even if you comment as Anonymous or with initials or even using your diagnosis as your name… I think reading what others think is important for this one. If you feel comfortable doing so, please indicate whether you have metastatic cancer.
So, without sharing my suggestions I’m asking for your input. Feel free to use these questions as jumping off points. Answer one, answer more that one, suggest something I haven’t even brought up.
I am interested in hearing from you what you think about some of the following topics and please be as specific as possible:
What is your preferred method of delivery of test results (ranging from the initial diagnosis to routine followup bloodwork and scans and biopsies)? Some results are given when only the patient is present. How do you feel about that? If you are called and told to “bring someone with you” you would that make you even more upset? In regards to bloodwork, scans, biopsies: do you always want those results in person even if it means waiting longer for those results? Do you mind if the results are by phone if that gets you answers quicker? Do you want the doctor to “cut to the chase” or do you feel more comfortable with small talk first?
How do you want a doctor to respond if you get emotional when you hear bad news?
Do you mind if your doctor gets emotional when delivering bad news or discussing your treatment? Does that make you more upset/scared or do you think that shows compassion?
A new report showed that patients don’t like when doctors talk about their own situations to try to show compassion (“self-disclosure to show empathy”). How do you feel about doctors sharing their personal stories of their own cancer or medical conditions, that of their family members?
Do you like when a doctor admits that he/she isn’t sure which treatment option is best for you or does that bother you?
Do you like when your oncologist presents the one treatment option he/she thinks is best or do you like your oncologist to present a few choices and then you decide together?
Do you like when your doctor asks you questions about your personal life/family/interests? Does your doctor do this regularly?
Does your oncologist talk about your prognosis and if so, what are ways you prefer those discussions to happen?
Do you want a doctor to give you a life expectancy prognosis even though we know those estimates are right only about 20% of the time? Do you want them to discuss it only if you bring it up? Do you like to hear statistics about treatment success and odds of survival?
How much monitoring do you like? Does your doctor give you a choice in how often to conduct tests? Do you feel that tests get in the way of living the life you have left or do you need the results to know where you stand in your treatment?
What is the best way a doctor has communicated bad news to you? The worst? (having a few examples of what not to do can be instructive here)
In the metastatic community in particular there seems to be so much of a focus on treatment and the nitty gritty of all that’s demanded to just treat the disease week to week, month to month. That is only one part of managing it. Have you been offered counseling for services like mental health? Palliative care? Family services? Physical therapy? End of life counseling? Would you like those to be offered to you?
How important are things like scheduling, having phone calls returned, having ways to contact your physician/office that are reliable, even after-hours?
If your doctor asked you to fill out a questionnaire with some of these questions on it would you find that impersonal or an attempt to learn more about you and how to best help you?
Would you like your doctor to have printed material with general definitions of terms and words important to your care (drugs, procedures, tests)?
Would you like them to discuss support groups? Have you asked? Have you been told there isn’t one for your kind/stage of cancer?
And finally: If you could give young oncologists one piece of advice, what would it be?
Thank you for your input. My advice on these topics could probably fill a book. I have a feeling yours could, too. I will try to address some of these topics in future posts.
By the way, I may not be posting over the next few days because of the Thanksgiving holiday.
As always, thank you for your daily support here, on Facebook and on Twitter.