My friend Danny Sands writes a remarkable story about a recent medical problem he faced. It's called "On The Ultimate Loss of Control, Living with Uncertainty, Reflecting on the Future, and Being a Patient." It is beautifully written and worth a look.
I have been struck by a number of similar types of stories recently in which doctors have become patients or have been with close families members in that situation. I think it is a wonderful thing that physicians now feel comfortable relating such experiences. The common theme is one of shock and a new understanding of what it is like to be a "customer" in the health care system, especially when the episode involves an error or near-miss that is made in your treatment. Here is a "minor" example in Danny's case:
Because of the uncertainty of the diagnosis, I was prescribed atorvastatin to lower my LDL cholesterol and risk of future strokes. When I asked if they measured it in the hospital, I was told it was 107 (which is rather low already) so I politely declined. Besides, the imaging showed no evidence of plaque in my carotid arteries, my blood pressure was low, and I had no family history of cerebrovascular disease or coronary artery disease.
But--and I mean this with great affection for my colleagues who have written, in that I view them as among the best of their profession--isn't it a sign of the hubris of our profession that these doctors do feel the shock they write about? After all, they have spent years in training and practice and treated thousands of patients. In other fields of endeavor, the most important part of being and staying in business is to understand the needs of the customers. The most successful firms, indeed, are driven by the needs of their customers.
In contrast, look at what Ashish Jha noted after a recent injury brought him to the emergency room:
The biggest lesson for me was that this was not an extraordinary story at all. When I told my story to colleagues the next day, no one was surprised. We accept that when we walk into a hospital, we give up being people and become patients. We stop receiving care, the way I did on the bike path. Instead, we receive services. And when you are in pain, the difference between care and services is stark.
I have been struck by a number of similar types of stories recently in which doctors have become patients or have been with close families members in that situation. I think it is a wonderful thing that physicians now feel comfortable relating such experiences. The common theme is one of shock and a new understanding of what it is like to be a "customer" in the health care system, especially when the episode involves an error or near-miss that is made in your treatment. Here is a "minor" example in Danny's case:
Because of the uncertainty of the diagnosis, I was prescribed atorvastatin to lower my LDL cholesterol and risk of future strokes. When I asked if they measured it in the hospital, I was told it was 107 (which is rather low already) so I politely declined. Besides, the imaging showed no evidence of plaque in my carotid arteries, my blood pressure was low, and I had no family history of cerebrovascular disease or coronary artery disease.
But--and I mean this with great affection for my colleagues who have written, in that I view them as among the best of their profession--isn't it a sign of the hubris of our profession that these doctors do feel the shock they write about? After all, they have spent years in training and practice and treated thousands of patients. In other fields of endeavor, the most important part of being and staying in business is to understand the needs of the customers. The most successful firms, indeed, are driven by the needs of their customers.
In contrast, look at what Ashish Jha noted after a recent injury brought him to the emergency room:
The biggest lesson for me was that this was not an extraordinary story at all. When I told my story to colleagues the next day, no one was surprised. We accept that when we walk into a hospital, we give up being people and become patients. We stop receiving care, the way I did on the bike path. Instead, we receive services. And when you are in pain, the difference between care and services is stark.
This is why I implore the medical profession to move to the idea of patient-driven care.
As I have said at some recent conferences, patient-driven care does not mean foregoing the expertise, judgement and experience of clinicians. Nor does it suggest the abdication of their clinical responsibilities. But we must go beyond patient-centered care, in which the doctors and nurses decide what
is best for the patient. Patient-driven care, in contrast, is based on a
partnership between the provider and the customer.
And one thing more, returning again to Ashish's story:
Now that we are measuring patient experience and ER wait times as quality measures, I wondered how Falmouth hospital did. Out of curiosity, I looked up its ratings. They are fine. Average. This is not an outlier hospital. My experience was not an outlier experience. And that is the biggest disappointment of all.
I often say, "There is no virtue in benchmarking yourself to a substandard norm." Hospitals have come to accept that a "normal" level of (even just) patient-centered care is acceptable. It is not.
I am pleased to see the hubris of my doctor friends being shaken by their personal experiences.
And one thing more, returning again to Ashish's story:
Now that we are measuring patient experience and ER wait times as quality measures, I wondered how Falmouth hospital did. Out of curiosity, I looked up its ratings. They are fine. Average. This is not an outlier hospital. My experience was not an outlier experience. And that is the biggest disappointment of all.
I often say, "There is no virtue in benchmarking yourself to a substandard norm." Hospitals have come to accept that a "normal" level of (even just) patient-centered care is acceptable. It is not.
I am pleased to see the hubris of my doctor friends being shaken by their personal experiences.
Paul
ReplyDeleteFirstly, I know Danny and have worked with him (great guy). What a story.
I want to add to your to your comment. Danny's story long and complicated, and the paragraph you cite requires context. Yes, the drugs and testing require more explanation, but sometimes only in hindsight do you put together the pieces of what happened. The events leading up to his ICU stay not clear and the etiology of his seizure and fall vague.
The bigger message, like his reference to Bill Hurt's character in The Doctor, seems to be linked to his aggregate experience. You cannot understand his perspective unless you undergo it yourself (or like losing a parent, family member, etc). That was a hell of an episode. No text book reads or the number of years practicing will give you his vantage point.
Some of us empathize better than others. Thats where caregivers need to improve.
Brad
Paul, I think I take your point, but isn't it just as true that we patients feel the same shock?
ReplyDeleteI didn't read Danny's post as being specific to an MD. I read it as what ALL of us go through ... when I was active in ACOR it was pretty much universal when a new person showed up. The "What????" "How could this happen??"
In my experience smokers and others who know they're abusing themselves aren't shocked - unhappy, but not shocked. But even though I'd smoked years earlier, when I was diagnosed it was out of the blue - there was no indication I was unwell in any way.
Of course I'd expect an extra layer of shock from a clinician who knows how the body works and is self-aware and knows (like Danny) how to stay on a safe healthy path in life, as he does. But then there's that damned randomness factor.
(Having said that, I completely agree that a substandard "these things happen" norm is intolerable. If THAT aspect of being on the patient side shakes people awake, that's EXCELLENT.)
ReplyDeleteTo be perfectly honest, the change won't really come, because doctor's don't want to give up the power of potentially ruining a family's life simply because they can't admit to being wrong.
ReplyDeleteEspecially in Massachusetts, where arrogance is the norm and spinlessness abounds both in the judicial and legislative branches of the government.
You're absolutely right that we as healthcare providers must understand the patients' experience and perspective and we must eliminate hubris and allow patients and families to participate in all decision. But this is more complex than a provider understanding their customers. Healthcare is a collaboration around the health of the patients. Consequently, I think this appreciation and understanding needs to go both ways. As I wrote in the teaser to my post for the Society for Participatory Medicine's blog:
ReplyDeleteAs we know participatory medicine is based upon mutual respect: the clinician respecting the self-knowledge, experience, and wisdom that the patient brings to the collaboration and the patient respecting the knowledge, clinical experience, wisdom, and technical skills that the clinician brings.
While most patients won’t be able to experience what it’s like to be a clinician, most (perhaps all) clinicians, at some point, will experience being a patient.
More MD's and RN's should be patients in a place where no one knows their profession!
ReplyDeleteI think Brad gets to the point and helps me make it better. This post is not about arrogance or lack of sympathy. It is about empathy.
ReplyDeleteIt is very hard to move from sympathy to empathy. Sympathy is what we feel the other person needs. It is inherently self-focused. When I talk about hubris, I refer to our tendency to believe that we know someone else's needs based on our view of the world and then acting on that belief. Empathy is about understanding what the other person needs, wants, and feels, i.e., truly putting ourselves in their shoes.
We've got dueling definitions of "hubris," I think.
ReplyDeleteWell, okay; that's not the hubris definition I've heard about, so I looked fwiw
From googling "define:hubris" -
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excessive pride or self-confidence.
synonyms: arrogance, conceit, haughtiness, hauteur, pride, self-importance,egotism, pomposity, superciliousness, superiority; More
antonyms: humility
(in Greek tragedy) excessive pride toward or defiance of the gods, leading to nemesis.
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In that definition, I don't see a trace of the empathy issue Paul cites. Discussing this off-site, I said in an email to him:
"That doesn't resonate for me at all, among the good docs I've known who I think should change. But then this, on the Wikipedia page:
Hubris /ˈhjuːbrɪs/, also hybris, from ancient Greek ὕβρις, means extreme pride or arrogance. Hubris often indicates a loss of contact with reality and an overestimation of one's own competence, accomplishments or capabilities, especially when the person exhibiting it is in a position of power.
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I think the "often indicates" senses here are what (in my experience) have led too many docs to be complacent about "things are going pretty well in my craft," which supports hand in hand the view Paul has said about resistance to change: "Well, these things happen."
I'm guessing a good person with a "Things are pretty good" view gets shocked when they shift in an instant to being on the receiving end. My previous comment here said the same shock happens to anyone who gets a life-changing dx - but I'm guessing it's more than that when a complacent/hubristic doc is on the receiving end.
(And, I should note, I've never experienced a TRACE of the top definition of hubris from Danny. (For newcomers, Dr. Sands is my primary.) I do, though, frequently disagree with him re how fast we should push for change in our Society for Participatory Medicine! :-) And of course I agree with the teaser he posted, and quoted here.)
Danny,
ReplyDelete> While most patients won’t be able
> to experience what it’s like to be a clinician,
Agreed, but this is why I find it so useful to explain to patients (who can get pretty arrogant a times!) how complex a physician's life can be. For me a terrific pathway to empathy in THIS direction is the books we've discussed about the difficulties of diagnosis: How Doctors Think and The Night Shift. I'm sure there are more.
Perhaps there's great leverage for us in the movement in another post about the difficulties of diagnosis in YOUR case.
I think perhaps Dr. Sands' experience may not be the best example of what Paul (I think) is trying to express; the quotes from Dr. Jha are more pertinent to me. I think doctors who have worked in our U.S. 'system' for many years, and think they know its little quirks well, do experience a different 'shock' from lay patients when put in their position. Yes, the system operates for its own benefit and on its own schedule and, as Dr. Jha so eloquently puts it, you give up being a person and become a patient - you give up receiving care and receive services instead. Whether you gave empathy or not as a doctor, you get none or only lip service to it as a patient.
ReplyDeleteThat is the shocking part, aside from the perhaps-more-intense feeling of loss of control that a doctor-patient also experiences. Dr Sands may not have experienced that lack of empathy since he was a patient in his own hospital - his colleagues already saw him as a person. Should that make a dinfference?
nonlocal MD
ReplyDeleteWhat a great story! A great lesson to be learned. Are medical schools meeting these needs? I think not.