Ordinarily we limit guest posts to current members of SPM, but this is an extraordinary case. Duncan Cross’s post illustrates so many aspects of how empowered, engaged, activated patients view their lives, and how important it is to have an effective partnerships with their medical professionals. This is exemplary – except for the physician’s rejection of the patient’s perspectives.
Duncan Cross writes “the best-written patient blog on the web”, focusing on the common experience of illness, shared by all sick people no matter how different their diagnoses. He created ‘Patients for A Moment‘, the first blog roundup for patients by patients, and contributed to two books on chronic illness. His novel, League of Mortals, is now available. This blog post first appeared on Duncan’s blog and was reproduced here with permission.
This is the type of letter that e-patients should be writing their doctors for both good and bad performance. Thanks for sharing, Duncan!
My gastro retired, and the practice suggested a new one. She was mean. I wrote her this letter, put a stamp on it, and mailed it:
I want to apologize for my demeanor at our appointment last Thursday. I have some anxiety issues with respect to physicians, and they were in full force that day. I probably seemed defensive and upset, and I know that is not conducive to a good patient-physician relationship.
That said, I think it best that I find another provider. Part of my reaction was to how one-sided our conversation felt. I have had Crohnʼs disease for 20 years, and my case has been unusual and difficult in many respects. This has forced me to learn about my illness, stay up on trends in research, and pay close attention to my body and its signals. You would have to search hard to find a patient more knowledgeable, more capable, and more invested in their care. None of that seemed to matter to you at all. You were treating a disease, not a person.
I have been sick long enough to remember when physicians could do that freely – but those days are over. The prejudice that allowed physicians to lord over their patients is no longer excusable. So your attitude was a shock – like finding segregated lunch counters – and I did not know how to respond. I am sure you feel proud of the hard work that got you into that room, but keep in mind that what you endured is not a fraction of what I had to go through to get there. That you had trouble recognizing that fact was baffling and infuriating.
From my deep experience with this illness, let me say that when a patient complains of ʻpainʼ, you must take it seriously. The idea that pain is only real when the patient has obvious bowel inflammation is bad medicine. Physicians cause tremendous harm to patients by not taking pain seriously: nothing is more depressing or discouraging, or more alienating. One source of my anxiety is that a gastroenterologist told me my pain was irrelevant, during the worst flare of my life; my despair drove me into suicidal depression. You reminded me how much I wanted to kill myself back then.
My disease has taken a great deal from me: my career, my vitality, my sanity, my self-esteem, my hope. But by far the worst aspect of this disease is that it leaves me beholden to physicians who donʼt actually give a shit about me. It took a lot of work and a lot of pain, but I finally got to a point where I donʼt need that brand of help. So while Iʼm disappointed that you wonʼt help me get better, I am very much relieved that I donʼt have to let you make my life any worse. I worry your other patients are not as lucky as I am.
If you wish to be helpful in your practice, you must learn to regard those patients as partners and equals in their care. Until you do, you will never be able to really help them – and you may well hurt them.
I never heard back.
You have certainly created an accurate profile of many doctors whose egos are so inflated with their command of their diagnosis and treatment recommendations that they fail to listen to their patients and fail to provide a collaborative environment. Kudos to you for putting yourself out there and writing and sharing this letter. The more healthcare professionals recognize there is a problem, the more we can help them foster participatory medicine.
I appreciated coming across this today as I did something I’ve never had to do before today. I fired a doctor for being the most insensitive, hurtful, and trauma UNINFORMED professional. It stings experiencing unpleasant providers, but even more when someone is struggling with a traumatic event and they apply the “kick em when you’re down approach.” I was baffled. Still am and throughout a recent medical crisis, I have been so disappointed in the system. I work in healthcare, which makes it even harder. I simply do not understand people. Thank you for your letter as it is helping me prepare a letter and formal complaint against this PCP. I will never share anything about the trauma I have experienced with a healthcare provider ever again. It’s sad to me the arrogance of medicine. They make tons of money, live entitled lives, and treat their patients as less than. I don’t understand, and I’m so terribly sorry for everyone’s experience on here. It’s disheartening.
You have no idea how much reading you cogent letter helped me this evening.
Well, maybe you do.
Possibly one of, if not the best letter of this type I’ve seen — ever. No exaggeration. Love the clarity, directness and pitch perfect amount of zing without being mean. Would love to swap out the disease and possibly a few other details and use it.
On another note, I recently met with a new (and young) rheum whose demeanor, compassion, and listening skills were so extraordinary that I thanked her profusely in real time.
I applaud your letter. As a nurse, I put myself in the ‘awkward’ position as being the patient mouthpiece. Over my many years in nursing, my voice seems to have gotten weaker. My voice has given numerous patients better and empathetic care. In the 21st century, I still have that same voice, but the insurance industry, government , and overall indifferent attitudes have decreased my decibels.
I’m still here, gray hair and all- sharing my empathy with those who still need it.
Thank you for stepping up!
Thanks, everyone. I’m surprised at the response to this letter, but so glad people find it helpful. Anyone in similar circumstances is free to adapt it to their own physician. And for the record, I am also generous with praise when I think a provider is taking good care of me and being responsive to my interests as an e-patient.
This letter is spot on and so well done. Unfortunately, too many of us have had experiences like this and it is both saddening and infuriating. My son had a doctor who acknowledged that my son had been to the best doctors in the country and then proceeded to tell him that his illness did not exist! We go to doctors with such hope that they will help us get to a better place. If they are not able to do that, the bare minimum should be compassion and humanity. Impossible to believe that too many of them don’t understand that. Having said that, it makes the good ones shine even more and we are forever appreciative of them!
I read Duncan’s email/blog post and it was exactly what I wanted for us – I think patients should be taught to write feedback letters.
At SPM we have speaker patients and patients that talk to the Federal Government and patient advocates, but not many resources and information on what can a patient do locally with his/her own doctors.
When sick we are walked through the “system” without having much to say or when we say it it’s directed at people that have nothing to do with how the system is set up and are not empowered to do anything about it.
We should create templates for letters to doctors when we appreciate their care, when we don’t when appointments are difficult to make, when they are easy, when things aren’t good for us and when they are good. We should teach patients how to use them.
I can’t be grateful enough to Duncan for nudging me into starting this. And guys, read more of his blog and his book – it’s dirt cheap and an amazing read – especially those of you that know sick teenagers, get it for them so they will know they are not alone.
On my list of things to do/write: something about the personal protocol I’ve developed over the years for meeting with new-to-me-and-my-case providers. I’ve found that teaching them about my learning style, my typical response to pain, and non-negotiables re: treatment options smooths and soothes the way for a better relationship.
Meredith, please share once you write about your personal protocol, I would be happy to repost it.
Thanks, Ileana! I need to find an outlet because I recently decided to let my blog “go dark” and here’s why: http://bit.ly/1GPlWA1.
As Editorial Director for the Social Media Health Network of MCCSM (Mayo Clinic Center for Social Media), I could possibly post there but it’s not really the right audience. Although I did publish a post from Matthew Katz, MD re: how practitioners ought to learn how to interact more effectively (and compassionately) with patients, so maybe as a companion post?
i agree with you on how drs treat patients i was going to dr one week n the next week to er for four months till one day at er dr tells me there was nothin she could do and was sendin me home i told her fine sent me home but if anything happens to me her check and the hospital would be mine due to the fact that she never bother to exam me nor did she speak to the dr who spoke to me and also because she asked me how many pain pills did i want told her she was the dr but yet she asked me a patient how many pills i wanted i made her cry she emailed my dr i got sent to differ dr turns out i had cancer of the colon and they caught it right bfore it was goin to spread so yes drs need to listen to patients as we knw our body better than they do
Very well said!
I have been going to the V.A. for my Type 2 Diabetic care for years, and a recent move to Florida has put me in a new facility with a new doctor. I am going thru the same inconsiderate, uncaring treatment from my doctor as you wrote about. I’m not listened to, she makes me feel like I am “bothering her” by showing up for my appointments and the worst was when I called about sciatic pain that kept me from walking, she didn’t call me back for seven days. When I could, I went to the clinic and filled out a Change of Provider form. My next notice from the V.A. that it was time to make another appointment still had the same doctors name on the card. It’s the only healthcare I have. I would say I can’t believe it, but with everything the V.A. has been accused of in the last couple years, I’m not surprised, just sad.
I read your letter and I want to give you a standing ovation
Reading it made my day better, thanks :)