In the Society for Participatory Medicine we talk about professionals and patients being full partners in care. And sometimes, as in any partnership, the two part.
Have you ever “fired” anyone? Before it got to that point, did you express your concern (“I want to talk about something”)?
In the In Practice column in today’s Boston Globe, Dr. Suzanne Koven of Mass. General writes When patients split from doctors the latter feels the pain. It’s a sensitive, nuanced piece, delicately touching on vignettes with no easy answers:
I had been in practice about a month when I called a new patient to tell her that the lab had lost one of her blood tests. Not to worry, I said. We would repeat it at her next visit.
“There won’t be another visit,” the young woman replied coldly. “I told you my grandfather died of gastric cancer,” she explained, “and you did nothing to screen me for it.”
I mumbled an apology, hung up, and walked down the hall to a more seasoned colleague’s office. How could I have been so ignorant, so incompetent? How could I have failed this woman so utterly?
“What’s the screening test for people who have a family history of gastric cancer?” I asked my colleague. “There isn’t one,” he said.
See what I mean? A patient (apparently) tries to be vigilant about her health, and has a standard, and expresses it, feeling wronged. The doctor, far from shirking responsibility, feels bad and asks a colleague. And then it turns out, perhaps the reason she didn’t think of screening is that nobody taught her about screening because there isn’t any screening.
(That’s speculative interpretation on my part, from reading the few words in the column. But it serves the purpose of illustrating the complexity of a relationship when there’s so much uncertainty in medical science.)
Dr. Koven cites three ways to lose a patient, all painful: death, firing the patient (quite dicey, she says, with legal risks among other things), and being fired – sometimes amicable, sometimes not:
Sometimes the doctor-patient relationship, like any relationship, just doesn’t click.
Ain’t that the truth! Sometimes two people simply don’t mesh:
I recall a new patient who spent the better part of his first visit telling me how insensitive his previous M.D. had been. When I glanced at his records I saw that my predecessor was a physician who’d won awards for his extraordinarily compassionate care.
For heaven’s sake, what’s the tragedy if you’re just not a good fit? No doctor is starving for more patients to see. Heck, I know some patients don’t want to be participatory (they want to be told what to do) and some docs are that way. I hope they find each other and have a great life together.
Personally, I’ve come not to expect perfection from anyone, not even the famed Dr. Danny Sands. When he doesn’t bring something up that I want to know, I ask. (Duh?) That’s what an empowered person does: knows what s/he wants, and expresses it.
Note that Dr. Sands is not shy about saying “I don’t know,” and I don’t interpret that as a failure: a million new papers are published every year, and as I said a year ago on KevinMD, Expecting doctors to be perfect is a setup for dysfunction.
Clinicians, patients, family members – what’s your experience been? Have you experienced dialogs like the ones Dr. Koven cites? The whole piece is here. Perhaps most useful, what have you found to be effective in building a good working relationship?
__________
btw, it drives me nuts that Globe pieces commonly have a different title in the print edition. I know headline writing is challenging – I used to do it, on the school paper – but in this case there’s plenty of room in both the print & online editions so the difference is puzzling:
- The online edition says “the latter feels the pain,” saying nothing about the former
- The print edition’s title is “it’s usually the latter who feels the pain,” suggesting doctors get left holding the (emotional) bag, and patients don’t.
Which does Dr. Koven mean??
Oh wait – instead of being disempowered, I’ll use the first E (empowered) and write to her. Her address is in the column, so what am I doing sitting here acting like there’s nothing I can do?? Funny how easy it is to fall into that trap.
I have a rare condition (between 1 in 300k and 1 in 1m) and it is unknown by most non-specialists and is little known by many specialists. I have “fired” 3 specialists and 2 PCPs. Some people, in any field, when they are expected to be experts try to hide what they don’t know. Fields like medicine and law are places where experts routinely interact with the general public (many experts, like me, work primarily with people who have some knowledge of their field) and often have a low opinion of their clients. With the autism-immunization movement and the generally low scientific literacy among the public, perhaps this is unavoidable for some, but it doesn’t mean it is excusable. When I meet someone who is not expert in my condition, pretends he is, and is dismissive of my knowledge, I just walk away!
> When I meet someone who is not expert in my condition,
> pretends he is, and is dismissive of my knowledge,
> I just walk away!
Well said – if I read you correctly, the “sin” isn’t not knowing, it’s pretending they do, right?
Have you ever approached them to discuss this issue?
Pete said “When I meet someone who is not expert in my condition, pretends he is, and is dismissive of my knowledge, I just walk away!”
I agree Pete. I used to be blindly trusting of the medical community until I ended up having a rare medical condition that required that I remain hyper-vigilant to treatments, medication, etc… It was only then that I experienced distrust, abandonment, and outright hostility from the medical community when I attempted to direct my medical care. The only experts were thousands of miles away and I had to constantly relay information. It was as if every new doctor that I met would require me to go through a literal gauntlet to have to prove what I said was true. I have found only a few local medical professionals that were not dismissive and actually wanted to help me. Trying to find an optimal practitioner now is an absolute hell.
Sometimes there just is not a good “fit” between doctor and patient. If a patient wants to see a different MD at our cancer center they are not discouraged in seeking out a better/different clinician without feeling guilty.
Of course, the nurses and MD that are left do feel some distress and wonder if there was something we could have done differently.
Some patients are looking for hand-holding; others want straight forward information and relationships with their MD.
What I like about Peggy’s comment is that it shows LISTENING. Listening to what the patient cares about. And sensitivity to different people’s needs for what care is, at that moment.
(Disclosure – I knew Peggy in high school – but that’s immaterial, because trust me, I don’t agree with the views of everyone I knew then.:-))
As my mother would often say, “Better the devil you know,” and, unfortunately, I have sometimes found that experience to be true. We have had differences with my dad’s primary care physician, but were afraid that if we “fired” him, we would either get — a) someone worse; or, b) no one at all (at least not for some time). Moving on just isn’t that simple, especially if the patient has a complicated medical history.
Winnie, I know what you mean – it’s hard to switch mid-case. I think this is one of the essential differences between healthcare and other industries.
If we could be sure a new care team would reliably have a comprehensive picture of the situation, we’d have a lot more consumer mobility.
I was abruptly fired once by a doctor – a very prominent female gynecologist in San Francisco. I was in the middle of the madness of papers and contingencies flying back and forth when I was buying my house, presented with a very tight deadline for something, and I ended up unable to get out of the office in time for my routine appointment. I kept them informed of my progress and my ultimate inability to get there, so it wasn’t like I just didn’t show up. This was in the days before email use in most businesses or even widespread use of cell phones, and I was tied to the fax machine and office phone, or I would have lost my house.
My doctor then called me up and *left a message on my work phone* angrily firing me, telling me, incredibly enough, that she had delayed an emergency c-section in order to wait to see me.
To say I was shocked out of my mind would be an understatement.
I thought about calling her to try to sort the situation out, then decided that if she really did delay an emergency procedure like that for anything, let alone a routine annual screening of a former paramedic who well understands triage and medical priorities, she wasn’t the kind of doctor I wanted to continue to see anyways, especially because I was still of childbearing age and hopeful that I’d have children.
THAT’s a fascinating twist, Wendy. I sure agree that if the doc had that judgment, she’s a bit crazy! I bet she exaggerated that quite a bit. But still.
Yes, she probably did exaggerate, but it left me with no desire to try to work things out just in case.
Thanks Dave, for bringing this forward. Learning lots, as always, from comments.
I have two scenarios to share.
1. The rads doc who said, of my decision not to proceed with her recommended course of treatment: ‘I hope you’re not the victim of survivor’s euphoria.’ She had an otherwise lovely manner, and I wonder what would’ve transpired if I’d had the wherewithal to tell her how her tossed-off comment affected my opinion and level of trust (not to mention discombobulating my psyche).
2. The extremely short tempered MRI tech coming on shift. Her attitude affected me more than MRI apprehension. This time I decided to say something. What came out of my mouth was: ‘I bet you could use some kindness.’ (not what she expected either, I can assure you. But sure changed the dynamic.)
In our evolving role, can we patients also be teachers? Should we patients also show empathy to our care providers? Are these questions (opportunities?) that arise as participatory takes on its own meaning for each of us?
Kathy Kastner, participatory ponderer
Hi Kathy – you bring up a key point (can we patients also be teachers? Answer: YES!) While empathy (as you demonstrated) is an important way to get a point across, I had some (surprising!) success with a much more direct approach three years ago when I phoned the Director of Cardiology at our heart hospital directly after a nightmare experience during an echocardiography appointment. Turns out my concern happened to be the second patient complaint in less than a week about the same two particular echo techs – so the Director asked me to put my concerns in writing so she could share them verbatim.
What evolved was something I called “Carolyn’s Top 10 Tips On How to Treat Your Patients”. I later learned that not only was this list read aloud to each of the techs involved, but it was later copied and distributed to all staff working in Cardiology, and from there it was posted on staff room bulletin boards throughout the entire hospital. Other health care providers have told me since then that my little Top 10 list has been distributed to many, many other hospitals near and far.
Trouble is, most of us patients can feel pretty vulnerable and reluctant to “make a fuss” about the conduct of the docs, nurses and other health care professionals we entrust our care to, no matter how inappropriate, dismissive or “discombobulating” that conduct might be.
But the more “experienced” I get at being a heart patient, the less willing I am to tolerate the intolerable.
> What evolved was something I called
> “Carolyn’s Top 10 Tips On How to Treat Your Patients”.
Well?? You gonna share them?? Sounds like good fodder for our Journal of Participatory Medicine, or at least a blog post!
Thanks Dave..Carolyn, I want to see and share your top 10 list too.
[wonder how they line up with Stephen Wilkins (mind the Gap) top 10 – I saw you commented.. but didn’t share your list there, either ;)]
http://healthecommunications.wordpress.com/2012/12/24/the-10-commandments-of-patient-engagement/
Thanks, too esteemed heart sister for story about echo tech. Hadn’t even thought that by calling her out (as you did) I might be doing the ‘next patient’ a service.
and if you want to see yet another list.. mine – from JOPM
http://www.jopm.org/opinion/commentary/2011/09/06/my-8-point-participatory-philosophy-what-makes-me-a-participatory-patient/
And now, a toast to the last Saturday nite of 2012.
Here’s the link, Dave (also embedded in my comment name): http://myheartsisters.org/2009/07/10/open-letter/