Empowering the patient
Something happened yesterday which has prompted today’s blog topic – patient empowerment – a recurring theme on this blog. Now I know there are plenty of good doctors out there, who carefully listen to their patients and are fully engaged with them, and I don’t wish to come across as a medic-basher, but once again, I found myself in a disturbing doctor/patient situation which has raised my hackles.
I have mentioned before my anger and frustration that my oncologist never discussed with me at the outset of treatment, the fertility complications which can be a result of treatment for breast cancer. I felt at the time that my concerns were not listened to and it left me with a lingering distrust of the medical profession – I stress this is my own personal issue, I am happy to know that many of you have a wonderful relationship with your medical carers. I know it is also unfair to tar every doctor with the same brush of mistrust, but yesterday my faith was shaken yet again.
I am currently undergoing fertility treatment – a stressful and anxious time as I am sure you will appreciate (I write about this on another blog – Diary of a Miracle). Yesterday, we had an appointment at the clinic for a scan to check the progress of the treatment following a course of injectable hormones, prior to scheduling an IUI (intrauterine insemination) procedure. The scan went ok and we had a discussion with the doctor about the next hormone injection that I need to take. She wrote the instructions on a piece of paper, handed it to me and then she got ready to send us on our way, without any mention of the IUI.
So I asked the question, what about IUI? She flicked back and forth through my chart and said oh, are you down for IUI? I was really disturbed by that. She tore up the paper she had written my earlier instructions on and said forget about that then and I will be back in a minute, I need to consult with someone. We were left sitting stunned. It seems pretty basic that a doctor would read the chart which clearly states that we are scheduled to undergo this treatment!
This brings me around to today’s topic. Shouldn’t we have the right to expect the same amount of customer service from the doctor’s office or hospital as you’d expect from any other business? We are too inclined, especially in this country, to view our doctors as the ones in charge of our treatment and blithely trust what they tell us to do. Isn’t it time we stopped blindly following what the doctor says, without question? Now I realise that yesterday’s experience is relatively minor with no damaging consequences, but what if it points to a wider issue of care for the patient? Kate Clay, program director of the Center for Shared Decision Making at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, says today’s unprecedented number of new drugs and high-tech procedures means patients need to take control. “Don’t assume the system is going to work for you. Make it work for you.” Wise words and one I am taking to heart again. It also reminds me of the need to keep our own medical records – at least then we know precisely what is in our chart. (For more advice on managing your own medical records, click here for a previous blog post).
Have any of you experienced a similar situation as a patient? Do you have any advice you could share on how to become a more empowered patient? I would love to hear from you.
Related Posts:
Fertility concerns of young women with breast cancer
Oh my Gosh Marie! I am so sorry that happened! You are spot on with we as the consumer and the customer who is paying the bills to expect customer service. I share your same caution when it comes to doctors. I too am not about doctor bashing. My radiation doctor was fantastic. However my oncologist was administering Herceptin with my chemo. I read that I was suppose to have a baseline with my heart (Echo cardiogram) that was never done. When I asked my doctor about this – after 5 doses of this drug he informed me that I already had one. I told him I did not think so and to check my chart. He said “Oh we must have forgotten to do this.” Yes that is right!
It makes it hard to have confidence in a doctor who is so busy that I routinely have to wait 1 hour in the examining room before I see him. That is patient overload if I have ever seen it. We as patients must go into our appointments informed. Doctors are human and they can make mistakes.
Thanks for opening up Marie and telling us your story. I am with you sister in thoughts and prayers!
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Thank you for sharing your story with us – I too am disturbed at the cavalier attitude of your doctor and would have to say that I would probably be one of those who put blind faith in the medical profession. You and Luann have opened my eyes to the danger this can pose.
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I am shocked to hear of your experience yesterday at the fertility clinic. As you say, it is a stressful enough experience without this.
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i think of myself as my own personal quality assurance department. i had a similar situation with a fellow (not my doc) who started telling me all the side effects of a treatment that WEREN’T relevant to my situation. i actually said to him, “no that doesn’t apply to me. did you even read my chart?” he got flustered. i let my doctor know that i did not want that fellow involved in my care anymore. i have become ruthless about these situations. if people aren’t going to take the five minutes to review my situation before they open their mouths and tell me what to do, they will not be treating me, thank you very much.
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i have become ruthless about these situations. if people aren’t going to take the five minutes to review my situation before they open their mouths and tell me what to do, they will not be treating me, thank you very much.
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Common thread>>>doc has not read/reviewed the file before the appt. I know this is a time/# of patients problem and I know they usually try to quickly scan the file as they are entering the room (NOT sufficient) but I’ve started asserting “why I’m here” “what has been done so far” “what I think you should be doing” etc. before the doc barely says hello. My personal doc is terrific, low case load, all the time you need/want, reveiwing the file with me etc. Specialists seem to be another ball of wax.
One idea I’ve found helpful…I often say all of the above to the nurse while my vitals are taken. Sometimes that prompts a reminder from nurse to doc – and sometimes they know your file better than doc and can point out info.
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“Patients and their loved ones swim together with physicians in a sea of feelings. Each needs to keep an eye on a neutral shore where flags are planted to warn of perilous emotional currents.” – Jerome Groopman, M.D.
As someone who has worked in healthcare for many years, as well as personally experiencing doctor/patient encounters during my wife’s and son’s illnesses, I can appreciate your concerns about not being listened to and your distrust of the medical profession.
Unfortunately, too many physicians are reimbursed generously for doing, but not thinking and listening. It is a result of their medical training and the conditions of the practice of medicine today. They are caught between the need for billable procedures and caring for their patients as cheaply as possible. As a result, they are overwhelmed and often withdraw, treating patients without caring for them. Minimizing thinking seems to be an energy conservation strategy. Also, they are increasingly becoming prisoners of algorithms.
Lori Alvord in The Scalpel and the Silver Bear: The First Navajo Woman Surgeon Combines Western Medicine with Traditional Healing writes, “Now more than ever, patients themselves feel removed and forgotten, powerless in the face of the institutions that were created to help them. In many ways modern medicine has become a one-way system – from physician to patient. Physicians do the directing, talking at their patients. The other direction, the listening on the part of the physician, is becoming lost. Patients want to feel like more than a set of organs and bones, nerves and blood, and participate in the process of restoring their bodies to health.”
Dr. Jerome Groopman, author of How Doctors Think, says, “We need, as doctors, to think better in an open way — to listen more deeply…” His advice for patients, if necessary, tell the physician, “I sense that we may not be communicating well.”
“Don’t assume the system is going to work for you. Make it work for you.” Excellent advice! And keep your eye on that neutral shore.
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one year ago, I was diagnosed with breast cancer. I had no reason to be suspicious of it. No family history, no pain, no nothing except lumps which I have had for 22 years. If it hadn’t been for a friend urging me to go beyond what the doctors were suggesting and get an MRI, just to be certain of the “lumps”, I would have been misdiagnosed for possibly up to a year and be fighting a fatal disease right now. If it was not for the grace of God, the advice of my friend and my persistence, my life would literally be over. My doctors were OK in letting me stop at the mammogram. I will never let doctors talk me into anything I am not completely comfortable with again!!
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It’s not just you who is not being listened to. Again, as someone who has worked in healthcare for many years, as well as personally observing doctor/nurse encounters during my wife’s and son’s illnesses, patient care is in its essence all about the exchange of valuable information, which is critical to improving and maintaining the health and function of patients.
Failure to understand what nurses do often results in dysfunctional nurse-physician relationships. The essence of patient care is communication between physicians and nurses. But communication about the status of a patient is one of the most complex aspects of dysfunctional physician-nurse relationships. All too often nurses must bear the burden of attempting to facilitate communication with physicians, when physicians don’t take time to talk to patients and families; don’t take time to talk with other physicians; and don’t time to talk with nurses. For their efforts nurses often confront physicians who not only blow them off but blow up at them. The result is poor, potentially life-threatening levels of communication about important patient care issues. How nurses negotiate their relationships with physicians can have a significant impact when you are ill and vulnerable and require medical and nursing care.
Do you ever see the names of the nurses who work in your physician’s office? The names of all the physicians in the practice are listed I am sure, but most likely the nurses names are absent. Why? Why not?
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I am sure you are not alone in this experience, but your hunches serve you well. Informed patients help doctors do their jobs better. Doctors are human and so are fallible to the same mistakes that we all make in our everyday lives.
At Expert Medical Navigation (www.exmednav.com), we help people take charge of their health treatments and become better informed about their conditions. We do this by offering consultations from real doctors and decision tools developed on concepts from the Dartmouth Institute and Society for Informed Medical Decisions. We ardently believe that patient empowerment is the best way to improve quality of care and reduce costs in our healthcare system.
Thank you for bringing this to light and for sharing your personal experience. We wish you success with your ongoing fertility treatments, and hopefully not a recurrence of this type of situation!
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Thank you for your comment Mike. I must say this looks very interesting and I will certainly check it out.
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I am reminded of a wonderful quote from the sublime Emily Dickinson…
I’m Nobody! Who are you? ~Emily Dickinson
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I am a doctor going through treatment for breast cancer and am saddened but not surprised by your experience.
The doctor you encountered would benefit from feedback, given graciously, to help her improve he interpersonal skills. I learned some hard lessons along the way when my focus was on the task to the exclusion of the person.
The metaphor of business and customer service does not fit with healthcare in my view. I think it is much more about nurturing a mentoring relationship. Physicians are a route to knowledge and perspective that cannot be found on websites by even the most persistent patient without medical knowledge.
Breast cancer care is not my specialty, and so I am on a steep learning curve like all other patients. My physicians are my route to better understanding of my choices. And the choices will always be mine. No-one can do anything to me without my informed consent.
Seek to be as informed as you can, nurture relationships that will support you to make the best choices for yourself, and live the example of treating others as you would like them to treat you.
“Be kinder than necessary, for everyone you meet is fighting some kind of battle”
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My sincere thanks to you for commenting here.
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Great post and fantastic comments!
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You are right when you say that this situation wasn’t life threatening..nevertheless it does point to a wider issue which judging by your commentators is something experienced more than it should
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This post and the comments that came after it has been extremely empowering for me..thank you for posting it!
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Fantastic comments!
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Such a valuable post and the comments as others have said have added hugely to this subject
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This post has been incredibly helpful and even more so the comments after it
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