Tweeter asks: ARE E-PATIENTS CROSSING THE LINE?
What line? Where is the line? In former times the line was malpractice. Honestly, that was the only solution to an inadequate or inept doctor. If a patient had a doctor that did not listen and the patient got even sicker or died as a result, he or his family could sue. It was simple. Everyone knew his role.
Patients asked doctors for answers. Patients paid the doctor for answers. Patients had questions and doctors had answers. If patients were harmed in the process, a lawsuit could be filed.
Today, it’s complicated. Patients who don’t get answers from their doctors can persevere in other ways. They don’t have to accept a suspect or inadequate answer. They can research information online. They can network with other patients. They can conduct online polls on their blogs. And they can search for doctors who are better equipped to manage their cases.
So, where are the lines today? Are patients who read medical journals out of line? Are patients who share their own experiences with others out of line? When do e-patients cross some kind of line of what is acceptable? How do they know when they violate the unwritten law, transgressing into a sacred realm of medical knowledge?
Two ways to look at e-patients
There are two ways to look at the modern scenario. There is the “Us versus Them” mentality where doctors and e-patients square off against one another. They draw lines between “our side” and “their side.” Alternately, there is the partnership model where healthcare becomes a collaboration between patients and doctors. Both have knowledge, one as an expert in his field (the doctor) and one as an expert in himself (the e-patient).
Most patients have their own examples of struggles to get answers from when doctors do not adequately address the concerns of patients. I will use two that affected me personally. I choose them because they demonstrate the dead end of drawing “lines” that sound too much to me like “Don’t drink from this fountain” or “Sit in the back of this bus.”
Two examples of un-empowered patients
My first example came when my husband was entering seminary. Money was tight and healthcare was pay as you go. On a retreat weekend, I experienced a sudden onset of excruciating joint pain I had not experienced before. At first, the pain was in my neck accompanied by redness. I suspected a spider bite since we were in the woods. Large doses of ibuprophen only helped a little. When the pain spread to other joints, the VIP’s at the event became concerned and insisted I seek medical attention.
My visit with the urgent care doctor was short. I described my symptoms and showed him the lacy red rash that covered my legs. He told my husband there was nothing wrong with me. My husband paid him one hundred dollars. I felt powerless to argue.
There was a happy ending: I arrived home to see that my little girl had a red face that looked like sunburn. If you hadn’t guessed it by now, I’m sure that gave it away. I had Fifth disease caused by Parvo virus. Our pediatrician recognized it immediately. The virus resolved without treatment. But I would have been more comfortable with prednisone.
Maybe it didn’t matter that I was embarrassed or spent money I didn’t have to be insulted by an incompetent doctor who did nothing to make me more comfortable. However, a similar scenario ended tragically. My grandmother was in a car accident when I was young. When the emergency room doctors released her as healthy, she continued to experience pain. When she returned repeatedly, she was assured that she was only upset. My grandmother was bleeding internally. She didn’t recover. My family sued.
I believe that her story could have ended differently today. I believe that the bright woman could have been an e-patient if she had the opportunity. It was not a door she could have opened herself, but she could have walked through it the same as hundreds of women I see on my blog or Facebook every day. None of the doctors viewed my grandmother as a partner in her treatment. Her assertions went unheeded. Doctors and patients who are leading the way today toward patient empowerment are working to change sad endings like that.
So, are e-patients crossing the line?
I don’t believe e-patients want to usurp the role of doctors. They just want to get well – or see their loved one live on. Certainly patients should trust doctors’ judgment, but some doctors got C’s in medical school or are too busy to read the latest study or just have poor listening skills. Collaborating with patients could make them better doctors.
Are e-patients crossing the line? If so there will there be new lines. I think the roles are changing. I wear the e-Patient label proudly – for the time being at least. I don’t care what we are called – as long as we can be partners.
Kelly Young is the author of the Rheumatoid Arthritis Warrior website. Kelly’s e-patient story is on e-patients.net. Her Twitter is @rawarrior.
Note: The link it the Tweet referred to a blog written by Martin Young, MD. I do not believe that Dr. Young meant to imply that patients are crossing lines inappropriately by being e-patients. I take him at his word when he states that he supports e-patients as a concept and as individuals. He has personally been supportive of me and my work as a patient advocate. I have had discussion with him and I do believe that he is honestly concerned for our welfare as patients.
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“Collaborating with patients could make them better doctors” that is such an important and pivotal statement in regards to health care. Collaboration in the true sense of the word makes health care safer at every level. No one has the needs of the patient at heart more than the patient themselves. Blind faith in anyone is dangerous. However, when the doctor listens, respects and values the patient, trust develops and trust itself, when well placed, is therapeutic.
In my field of maternity care, when care is collaborative and women lead the care; when women are informed and have choices in what happens to them, the outcomes for women and babies are optimised. When professionals are in silos and hierarchical decision making is valued, communication between professionals and women is compromised, women feel ‘done to’ and no one feels good about themselves. My research http://hdl.handle.net/1959.13/29305 showed that care becomes robotic under those circumstances and emotional and social intelligence goes down the drain. Collaborative care ensures everyone is able to contribute, make appropriate decisions, act intelligently and feel good, especially crucial for the woman and her baby. In terms of women using social media to find out their rights and the best care, that’s fantastic – we need more of it.
Thank you for your thoughtful comments. It sounds like you are doing important work.
This is a great and very timely article.
I am a hip replacement patient that runs a patient focused website and it sometimes scares me the sort of questions I get asked. Why are patients ready to trust a complete stranger with no medical qualifications rather than go back to their doctor?
One issue for most patients (me included) is that we don’t know the questions we need to ask at the time we’re talking to our doctor or we feel too embarrassed to ask too many questions (me definitely not included!)
Patients need to be heard and need to know they have been heard.
all the best
Pamela
The ‘line’ is negotiated between the provider and the patient. It’s defined by the relationship shared between the two.
Ha! Perhaps it *should* be negotiated, but sorry doc, when was the last time you had a patient seriously try to negotiate anything with you?
From a patient perspective, it can be a scary thing to try and “negotiate”. What if the doctor then refuses to treat you, because they’re affronted by your attempt and (as they may see it) insult to their professional abilities? What if your family also goes to this doctor? Are you affecting the care of your loved ones by trying to become involved in your own?
Those without power have a hard time negotiating anything, especially when they’re not willing/able to “negotiate” with their feet.
Jon… I negotiate with patients on a weekly basis. I also call MRI centers, hospitals and amb surgery centers on their behalf too. Never be afraid to negotiate.
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.
This story never gets old. Also, like the comment by @Doctor_V above!!!!!!!!!
Thank you for such a thought provoking post. It did provoke many responses from me.
Part of me wants to answer this as a patient. Part of me wants to answer this as a professional. Part of me wants to answer this as a caretaker of patients. And part of me wishes to change the culture of medicine to one less adversarial for all with a less litigious and fearful defensive atmosphere.
Cheers,
Melissa
Thanks for stopping by Melissa… enjoyed your comment, and agree with your conclusion.
Howard
I found this post to be very germane to the whole health care industry today including nurses and other hospital workers, not just doctors. Unfortunately, hospitals tend to become very “institutionalized” and set in the ways that have more or less “worked” for years and years. I believe that this is due in part to the increased age of many of the senior staff members – I can say this without undue bias being an older health care professional myself. My advantage is that I am married to a younger woman who, as owner of a maketing agency, is actively engaged in all media aspects including social media. She is bringing me kicking and screaming into the social media age and gaining an understanding of the extent of information available on line.
Thank you for addressing this timely issue.
Rich
I think the problem goes beyond doctors. Obscure forces (just using a rhetorical figure) have settle down on health care industry, just like pharmaceuthicals and insureance corporations. I think the problem is not only malpractice but corporate interests that are usually different from healt care requirements and needs.