by Carolyn Thomas ♥ @HeartSisters
I recently had the honour of being invited to be the guest lecturer at a university class of young students learning about chronic illness. (The word “young”, of course, is relative, since almost everybody on earth is now so much younger than I am). These students were absolutely terrific – enthusiastic, smart, full of questions and ideas about healthcare. But about halfway through our 3-hour class together, I began to observe a pattern in the way some of them approached their small group exercise assignment.
This exercise divided the class into three smaller groups, each given a patient case study and asked to identify potential barriers to good care that their assigned patient might be facing. For example, some barriers included poverty, or not speaking English, or mental illness, or no family support at home, or – more often than you might imagine – the unconscious bias of the healthcare professional against the patient’s particular demographic.
Some students stood out for me. They were the ones immediately jumping ahead to the solutions they’d already come up with to help solve the systemic healthcare obstacles faced by their case study patient.
These interruptions reminded me of something that seems to pervade our healthcare system.
It’s the almost irresistible compulsion to leap ahead to a solution in search of a problem – instead of the other way around.
Here are a few examples. . .
1. Resilience Training for Physicians: The issue of physician burnout is a problem throughout the medical profession. According to the Canadian Medical Association Journal(1), burnout can have a very serious effect on the physical and mental health of physicians. It can also lead to decreases in productivity, cutbacks in work hours, early retirement from the profession – and even higher suicide rates. Patient care can also be affected, as physician burnout has been shown to predict medical error even more strongly than fatigue does.
One recently popular solution to this growing problem has been to start teaching resilience training to physicians and medical students. If docs could only learn how to be more resilient, they wouldn’t feel so burned out – right?
Well, we don’t know if this is true or not. As suggested in the British Medical Journal (BMJ) this month, we’re asking those whose workplace is hurting them to change, rather than changing the hurtful system, as the BMJ authors explain:
“If you were to ask whether resilience training or protected break times with reliable work schedules is more likely to improve their effectiveness and satisfaction at work, support for the latter approach would surely be resounding.”
2. Self-tracking apps: When I spent several days in Silicon Valley attending the Medicine X conference at Stanford University, I met a whack of young Stanford undergrads, mostly in engineering or computer science, each one loudly eager to tell me all about their new start-up company, each start-up guaranteed to “change healthcare as we know it!”
But within a very short period of time, it became apparent that few of these hypemeisters had actually been within 10 feet of a Real Live Patient before rushing out to line up venture capital investors for their new digital health solution. And each had started out with what they wanted to create for the “worried well”, not for patients whose need to track is often viewed as yet another burden of treatment.
Their belief: there’s no problem in life (including a medical diagnosis) that can’t be fixed with technology. If your only hammer is tech, all you can see are problem nails that need your unique technology solution, even if these are marketing-based (not evidence-based) solutions. See also: ‘Healthy Privilege’ – When You Just Can’t Imagine Being Sick
As the late patient activist and author Dr. Jessie Gruman once wrote:
“I’ve been approached by a number of mobile app developers looking to speak with a real patient about their projects. While talking to potential users is generally a good idea, these developers weren’t interested in my needs, but rather were seeking endorsement of the beta version of their new apps.”
3. TeleHealth: This popular subset of tech has proven to be useful in isolated or rural areas where residents have little or no access to medical specialists. At a Vancouver medical conference, for example, I watched a mesmerizing live demo of a physician onstage “examining” a patient in a remote village hundreds of miles away, where the local nurse used a digital ear scope to film inside the patient’s ear. Thus a doctor in one location can speak to, listen to and “see” a patient in a faraway location.
But TeleHealth hit a staggering speed bump when Ernest Quintana, a patient at a Kaiser Permanente hospital in the San Francisco Bay area, was told that he did not have long to live – not by a doctor sitting at his bedside, but via a robot-powered computer screen that rolled itself into his ICU room. The images of the disembodied doctor’s face and his awkwardly delivered bad news were filmed by Mr. Quintana’s granddaughter because her grandmother (the patient’s wife of 60+ years) was not in the room to support her husband during this terrible “conversation”. Mr. Quintana died the next day.
The resulting public outrage was immediate, with most condemning the use of such technology in end-of-life care, describing this incident as “unethical” and “immoral”. The hospital spokesperson responded by saying that officials “regret falling short of the patient’s expectations” – as if the patient’s expectations of common courtesy or basic human kindness had somehow been unrealistic.
What each of these examples illustrates is a solution in need of a problem.
But it’s not that we don’t need resilience training, or self-tracking technology, or a doctor’s face on a screen riding around hospital wards on a little traveling robot.
The issue is that those who provide such solutions have successfully positioned themselves as the ones who can solve problems.
Meanwhile, most patients continue to tell anybody who will listen about real healthcare problems that are in need of practical solutions. The question remains:
Is anybody listening to patients?
When researchers at Ohio State University tried asking patients themselves how to improve a hospital stay, for example, they learned about actual problems that are commonly reported by Real Live Patients:(2)
- patients need a hospital room that provides core components of comfort to support healing (including not being ‘on display’ to people in the hallway by providing a privacy curtain at the room door)
- patients need a sense of security (like knowing who is entering the room and their role in the hospital, plus a safe for valuables in the room
- independent access to their day-to-day belongings within reach (those belongings are often stored in a tray table that gets moved out of reach)
To that list, here’s my own wish list of ongoing healthcare problems that require tailored solutions:
-better hospital food (what more can we say?)
-we need mandatory reporting of diagnostic error (we simply cannot fix what is not being acknowledged, never mind tracked, despite the Institute of Medicine’s bizarre insistence that “now is not the right time” for mandatory reporting, although they do admit that voluntary reporting is not working)
-we need a comprehensive hospital discharge plan for every patient before leaving the building (studies suggest that up to 90% of chronically ill patients are sent home without a written care plan)
-we need expanded home support services once a patient leaves the hospital (which would require hospital staff to be aware of what services the patient actually needs at home, and who in the community can provide those services)
-for eligible heart patients (i.e. virtually ALL heart patients), we need an official default referral to a cardiac rehabilitation program before hospital discharge (current physician referral rates are as low as 20% for a treatment that’s considered to be a Class 1 recommendation worldwide, or – as Oregon cardiologist Dr. James Beckerman likes to say to his non-referring colleagues: “It is bad medicine to withhold lifesaving treatment from your patients!”)
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Back to my young university students: during my closing comments in front of this class, I offered this broad recommendation (i.e. not even making eye contact with those premature solution guys): we must be very careful when listening to patients.
We cannot gallop at full speed to a problem’s solution before we truly understand their problems.
To do so is to feebly accept author Steven Covey’s truism:
“Most people do not listen with the intent to understand. They listen with the intent to respond.”
♥
1. Physician burnout a major concern” –
2. Patterson, E. S. et al. “Meeting Patient Expectations During Hospitalization: A Grounded Theoretical Analysis of Patient-Centered Room Elements.” Health Environments Research & Design Journal, 10(5), 95–110.
Q: Have you experienced a healthcare-related problem that begs for a solution?
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NOTE FROM CAROLYN: I wrote much more about healthcare problems (and solutions) in my book “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).
See also:
16 minutes that will change how you look at the “soul-crushing reality” of healthcare
When you’re about to become a hospital patient
How Minimally Disruptive Medicine is happily disrupting healthcare
Heart Sisters 
Hi Carolyn Thomas
I”m a doctor and I do listen to patients. But thank you for sharing this thought.
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Very glad to hear this!
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I have a question: I had a TRIPLE BYPASS a little over a year ago, how long does extreme fatigue last. I know you’re not a doctor but you have had contact with a lot of heart patients and might have an estimate.
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That’s a very commonly asked question, Kathleen. You’re right, I’m not a doctor – but I can tell you generally that researchers have studied this distressing reality, and found that many heart patients report “onerous fatigue” for months following a serious cardiac event, as one researcher wrote: “Many people experienced the fatigue as new and different, not related to physical effort or a lack of rest; it occurred unpredictably and could not be attributed to any definite cause.”
I wrote more about ongoing fatigue here, here and here.
It’s very common for the first year post-op to be the roughest. Keep that in mind – I hope the worst of it is over and you will soon turn a corner. If it continues, do talk to your doctor just to rule out other non-cardiac causes. Best of luck to you…
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Carolyn,
I can’t thank you enough for becoming the friend I wish I’d had the past five most challenging years of my life. How can we stop the heart meds TV ads from displaying the overweight woman walking with her slender friend implying that only overweight women suffer from this killer disease?
I was a fit, mountain bike riding, mud up my back, 24 BMI 63 year old woman when medical malpractice during my mitral valve repair caused ALL this.
Can you provide us with a format that we can reach these advertisers and inform them to not stereotype? Together, we can save more women from the hardships we live now.
Thanks,
Roz Golden, CO
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Hi Roz and thanks for your nice comment. I can’t comment specifically on your valve replacement scenario (but ironically, at the annual American College of Cardiology conference this weekend, FYI, two major studies were presented yesterday to cardiologists – and the world – that might interest you, comparing surgical valve replacement with the less invasive catheter-based procedure; this may have nothing to do with your specific case, but it just shows that valve procedures are getting lots of attention lately.
In answer to your question about reaching advertisers, I never miss an opportunity to ‘name and shame’ such companies on social media (in my case Twitter, but publicizing your objections – and why! – on any online site will help reach advertisers if you think they’re getting it wrong).
My own pet peeves are similar: (1) those media articles (traditional and online) on women’s heart attacks that use old white guys clutching their chests in agony before falling down unconscious (most likely actually experiencing cardiac arrest, not heart attack).
My other pet peeve: (2) articles about vaccinations that show screaming children getting a painful needle! (Only with vaccines is this stereotype seen – articles about the importance of children getting regular dental care, for example, never have pix of tiny children screaming in agony while sitting in the dental chair!!)
Meanwhile you could also contact watchdog agencies like the Better Business Bureau or the FCC Complaints about Broadcast Advertising department.
Good luck to you!
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I lead a cardiac peer support group (I’m not a healthcare provider, just a fellow heart patient) and I DO listen to patients. And I have heard horror stories and wonderful things too.
The latest was a man who had bypass surgery and was in excruciating pain but was told he couldn’t have more pain medication because the doctor had gone home and no one could authorize it, possibly not until Monday morning (this was a Friday). He ended up being discharged before he should have been because he and his wife gave the staff such a hard time until he got the medication he needed. Unbelievable!
The story about the robot was just over the top! I actually read that awhile ago in the news I get on my iPhone but had not seen the picture until you posted it here. I have to wonder what they were thinking in even acquiring such a thing. How much did the robot cost the hospital (further increasing patient costs, no doubt)? What is the purpose of having a robot? How can it possibly be better than having a live doctor look in on patients? How many human jobs did this robot replace? As for the actual communications, if they need to do that remotely and if the patient has a TV screen in his/her room, why couldn’t they just televise it over some kind of in-hospital channel?
As for cardiac rehab, as a 2-time graduate (2 stents), I do so support this program and ours is excellent. Our hospital built a whole fitness center and the program is housed there, and even offers cardiac rehab graduates an extended 4-week program with a trainer following rehab, for a cost that isn’t covered by insurance. I do wish the rehab appointment times were more convenient, as you mentioned in the article. But mostly I wish my husband’s a-fib diagnosis qualified him for the program; it seems to be the only diagnosis that does not.
Oh, just have to add that I’m so glad you quoted Steven Covey. His 7 Habits of Highly Effective People has so much common sense in it (and I wish all the US leaders would go back and read that book and use the advice in it!!!). I have used a Franklin-Covey planner every day for over 25 years and I have to say that if I did not have this tool I could never EVER manage our healthcare — visits, diagnoses, medications, etc. I write down all of our prescriptions — numbers, refills, costs etc — and have lately started a health journal as well to keep track of all our symptoms and what we do to get better. Highly recommend for any other patients who needs help keeping track of things, especially if you prefer not to use technology for this.
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Hi Meghan – thanks for your thoughtful response. That “robot” story just won’t go away. (I hesitated to call this self-driving tech unit a “robot”, but the Quintana family themselves described it as “R2D2” rolling into the patient’s room on its own).
Yesterday I read a defense of this practice written by another physician; his point was that this was a communication problem, not a tech problem, and went on to describe a similar experience he had with a family and patient hundreds of miles away. (Of course, in his story, everything went beautifully and the family was happy with what he calls a “conference call”). But until modern medicine can guarantee that every physician in every hospital speaking to every patient/family via an R2D2 screen has adequate communication skills, Mr. Quintana’s story is every patient’s worst nightmare about tech’s place in end-of-life care.
I love your description of your local cardiac rehab program – if only every hospital ran identical programs!
I’m sure you have heard many horror stories from your support group members, like the one you mentioned. We do hear good news stories too of course – but those bad ones really take the wind out of my sails…
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You’re right Carolyn, I have heard many good stories from my support group too.
One woman had the valve replacement you mentioned above, done via catheterization, because she cannot have regular anesthesia. She described the experience as wonderful — she felt so safe and she was well taken care of by the team of doctors who worked on her, and her condition improved a great deal following the surgery. (And I just read a story on this surgery by Smithsonian magazine on my news feed yesterday.) It boggles my mind that they can actually do this!
But I have to say, if I were in the hospital and a robot suddenly rolled into my room, I’d probably just freak out!
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I agree, Meghan! There’s technology (minimally invasive valve replacement) and then there’s technology (R2D2 rolling into my hospital room).
If I were in the hospital and a robot suddenly rolled into my room, I’d knock it right over on its shiny little back (…if I could reach it! And I may have to sleep with a long pole in order to do that, just in case…)
And (advance warning to my hospital staff!) because I’m no longer interested in lying there being nice and polite anymore, unless I was completely incapacitated, I’d also be screaming blue murder to get that thing out of my room!!
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I am a retired teacher, and most of the schools in my district, aware of how stressed their staffs are, have established “wellness committees.”
If the administration had actually asked teachers what would help them feel less stressed, teachers would say:
“You keep putting more and more on our plates, without taking anything off. We are working nights and weekends to keep up with everything you want us to do — huge amounts of paperwork, the expectation that we will plan family activities nights several times a month, after-school and before-school meetings several times a week, and Saturday meetings.
“We would feel less stressed if we had more balanced lives — work hard, but also have time for our own families, hobbies, exercise, and rest. Cutting back on excessive meetings and paperwork would help. Supporting us in finding ways to help struggling and traumatized students would help; too many of our students have serious issues, beyond what even the most caring and dedicated of teachers can handle.
“This wellness committee — it’s just another thing that you’re putting on our already overloaded plates! We get that we need more relaxation, more exercise, more balance! So cut the unnecessary meetings and activities and we could take care of ourselves the way we need to.”
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Hear! Hear, Lucy!! So well said!
Yet another example of a well-meaning yet ineffective solution (school districts could see that something was terribly wrong, felt compelled to DO something, somebody pitched this idea of a Wellness Committee to them, administrators jumped on the “solution” with great relief and optimism!
Just for fun, I Googled “What’s Wrong with Wellness Programs” – and got 295,000 search results! That’s a lot of “wrong” in one expensive concept, and a lot of money that could have been spent on truly helpful ways to ease teachers’ burdens and provide some of that balance you talk about.
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You are so correct…the current wave of replacing human encounters with digitized facsimiles…has gone to extremes.
My heart cried when I read your story about the announcement to a patient about end of life by a robot. As a nurse, the Dr. I used to make patient rounds with would ask me to come with him for family meetings and end of life discussions… to make sure the nuances that needed talked about were picked up and the family well cared for….I had so much respect for him as a human being and a doctor.
That being said….at 70 yrs old I have literally had my life saved by technology between my ekg app on my phone and my ability to email my doctor I have avoided at least a dozen or more ER visits. It truly facilitates modfication adjustments.
Patient centered care…. rather than device centered care needs to be the norm.
I feel a lot of misplaced enthusiasm on capital ventures is the result of an education system centered on preparing young people to earn money rather than preparing them for a soul centered, inclusive and caring life…
Building Character not just consumerism.
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Hello Jill – I just loved that story about your physician colleague and patient rounds. That was one smart doc… and true patient-centred care. Thanks for sharing that.
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With regard to an automatic referral to cardio rehab:
1) Insurance NEEDS to pay for it for at least 6 weeks. Mine would not. It would have helped.
2) Dad was 87 when he had a stent last year. No one even MENTIONED cardio rehab. He needed it. He had recently had a knee replacement and was just getting over that.
3) We live 60 miles from the closest program. There needs to be satellite programs.
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Such important points, Susan! I suspect that many organizers consider cardiac rehabilitation as a box to be ticked off a master list – e.g. they know it’s very important to offer a rehab program, but they haven’t quite thought through how this is going to actually work.
Where I live, classes are scheduled to suit the convenience of the paid staff, NOT the heart patients who need it, eg no evening or weekend classes for those who are still working, no child care provision, and the cost (not covered by many insurance plans) is prohibitive. The only good news: we DO have several satellite programs (community centres throughout the region, the Y, etc.)
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