RA Warrior Kelly Young inquires in a post on Dr. Howard J. Luks’ blog. Dr. Bryan Vartebedian of 33 Charts adds his answer in a post on Better Health.
What do you think: Are there lines that patients shouldn’t cross?
Jessie Gruman
Jessie Gruman heads the Center for Advancing Health, a Washington-based policy nonprofit funded by foundations to work on engagement: people will not benefit from the health care available to them unless they can participate fully and competently in it. Jessie draws on her own experience of treatment for four cancer diagnoses, surveys, research and interviews to advocate for policies and practices to
overcome the challenges we all face in finding good care and getting the most from it.
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Why is there a need to draw a “line”? What are medical practitioners afraid of? We hire physicians because they are better at what they do than we are. If they’re not, then why go to them? If they’re not willing to allow us the opportunity to take care of ourselves to the best of our ability, then it makes me suspicious of their true knowledge, and that they may be trying to put one over on me.
Medicine is not “us” vs. “them”, it’s a continuum, and physicians are just more focused on the care then the average layperson. If they can’t stay ahead of someone who doesn’t have the advantage of the education and peerage that they have, then get out of the way.
Yes its about all of us. NOT us and them. It is a learning process!
Melissa Cullen
Hi Jessie,
My intention with my post was to get others thinking about what the lines are and whether they serve us well. More than once I’ve plead that we should all be on the same “side.” For some reason, some are defensive when patients raise such questions or assume that patients must be rude or pushy in order for doctors to draw such lines. That is not my experience – either in my own life or with the patients I deal with every day. I have never told my doctor that I write a blog about my condition or that I want to be an epatient. Yet, those lines – more like walls – are there. I have not met doctors like Howard or Bryan or Ted Eytan in a clinical setting.
I hope it will be okay if I paste here the reply I made on Howard’s blog to Dr. V. and jonmcrawford:
Thank you for your comment Dr. V. Your description does sound like the ideal.
Unfortunately, with years of managing chronic illness & being the mother of 5 children from age 6 to 21 (2 with disabilities), I’ve only known one practitioner like you describe. She is my current pediatrician NP and I am thankful for her every day. There is a great deal of peace of mind to know that I can tell her or ask anything and she is never defensive, but only wants what is best for my kids. She always wants me to make the final decision.
I don’t ever argue with a doctor, but the one time I did attempt any “participation” in my RA care, my doctor instantly “fired me.” As Jon says, this is the risk we take. And in some cases, the consequences are grave. I had looked for years to find a good rheumatologist.
Although I was correct factually (with regard to the bone scan http://rawarrior.com/my-doctor-fired-me/ ), I might rather have continued to have medical care in my serious condition. The cost I paid for 1 polite letter requesting a 2nd opinion may not have been worth it.