Rediscovering health care's original goal: Reducing suffering

it took a tough 77 year-old ex-marine to show me how health care can create chaos for patients who are already suffering even when we think that we're doing our best this ex-marine was my patient and he was just the way you might picture him he never complained about his problems and he had a lot of them metastatic prostate cancer coronary disease asthma arthritis but these problems were all under pretty good control until one morning when he woke up with a bright red rash over both of its legs his joints were so stiff that he could barely move and he was in such pain that we admitted him to the hospital where I work and over the next 10 days he was seen by teams of experts in rheumatology infectious disease oncology dermatology and eventually we figured out that he had a rare condition called suite syndrome and he improved slowly with steroids but during those 10 days every single doctor involved in his hospital care rotated off and was replaced by someone new now nothing fell through the cracks in fact you could say that the opposite occurred because when he was discharged he was sent home with appointments for both of the Rheumatology attendings who had seen him it was at this point that my patients wife emailed me to ask whether it was really necessary to keep both appointments after all they lived an hour away and he was still having trouble getting in and out of bed let alone into a car if it was important they would be happy to do it but was it I was embarrassed by the confusion I apologized I kind of sugar-coated things a little bit I said we had been overzealous in our efforts to make sure he got good follow-up I told them which appointment to keep and I thought that would be the end of it but a little bit later she sent me another email and she said that she and her husband were frightened that was the word she used frightened by the number of clinicians involved in his care and she continued we are counting on you to tie all this together now in my career I have not had that many messages that boil down to do your job buddy but but I recognize this one when it arrived and I understood what it meant for all of us patients like my ex-marine they're like a stress test they show us how our systems break down and patients lose their confidence in the care that they're getting and ironically the more sophisticated the care the greater the risk for chaos and the more that patients fear that they might somehow get lost in the shuffle now here's the good news as tumultuous as our times may seem I think the arc of history is clear we are heading toward a better healthcare system a healthcare system that is in the process of getting organized and even competing around meeting the needs of patients these changes are occurring because of the economic pressures on healthcare not despite them those pressures are real and they are so intense that healthcare organizations are just starting to figure out that they can't deal with these pressures by trimming a little here or trimming a little there and that's the equivalent of you know turning down your thermostat a degree or two in the wintertime to try to save a few dollars on your heating bill it's not going to be enough what they have to do is step back and look at the big strategic question what are we trying to do and as organizations ask that question many of them are rediscovering the original goal of health care which is to reduce the suffering of pay now I know some of you are thinking hasn't reducing suffering been the goal all along and has a practicing physician I would say absolutely you know kind of you know now that you mention it there have been other things on our mind frankly lately there are new challenges that didn't exist before it's like a disease that didn't exist before you know a symptom of the new disease the doctor who says he'll call you and then doesn't and you wait and you wait and then you wonder what you're supposed to do now I don't think that these broken promises are a reflection of moral weakness and in the people going into health care today I think they're like my patients rash there is superficial manifestation of a much deeper issue and that deeper issue is the chaos that is a side effect of the medical progress that we've had in the last few decades now that progress is fantastic there is so much more that we can do today than when I came out of medical school but often times it feels like there is too much to do and that there are too many people involved and that they have narrower and narrower focuses and that no one is taking full responsibility it has full accountability for the big picture of what is happening to patients now here is how I know we have a real problem but is also how I know we are ready to take it on today when doctors get sick even they are finding that the system doesn't work well for them I'm thinking of one of my friends a physician who when she was 43 found out that she had two reasons why she was so tired one was that she had leukemia the other was that she was pregnant now my friend she told me how she walked out of her doctor's office after getting her diagnosis and she stood in the hallway of the hospital where we had both spent most of our waking hours for the last 15 years it should have been completely familiar but it didn't she saw these people with white coats and scrubs rushing this way and that and she said it felt like chaos I bring this up to emphasize that when we talk about suffering we're not just talking about physical pain we're talking about anxiety we're talking about the worrying about has the oncologist actually talked to the obstetrician we're talking about the uncertainty about what's going to happen next and when someone is going to call you to tell you what's happening next now my friend with leukemia she did just fine she waited until her child was born and then she started a chemotherapy and despite the delay she was cured in another era both of those lives would have been lost in our era her daughter's applying for college this fall two great saves in one case I mean I have to tell you in medicine we eat that stuff up we love it patients love it too we all love saves but this is why we have a tendency to forget that medicine cannot be just about the saves medicine has to be more than following guidelines and going for the occasional miracle patients want more as one of my colleagues put it patients want peace of mind that things are as good as they can be given the cards that they've been dealt if providers haven't delivered that peace of mind the work isn't done a century ago peace of mind was all that they could provide in health care today despite all of the advances that we've had patients still want and need that peace of mind but because of medical progress we sometimes forget about that part of the work but I think that's changing because it has to because of all the chaos of modern medicine and two years ago I wrote a piece in new in Journal of Medicine called the word that shall not be spoke and the word was suffering and what I wrote about in that article was how in health care organizations that I knew of we tended not to use the word suffering even though suffering was all around us because the word made us feel uncomfortable the word made us feel guilty but just 16 months later the New York Times wrote a front-page article about how providers were starting to use that word and were starting to organize themselves around the reduction of suffering they they need the example of providers who had decided that when patients suffer a loss of dignity or disrespect that's a deviation from the way they see themselves doing their work and they were treating that in the same way that they were treating safety events like when a patient gets the wrong dose of a medication now these disrespect events no one lost their life in them no one's health with compromise but a variety of types of suffering where it was inflicted you might say suffering is part of life you know suffering is inherent to healthcare and you're probably right I mean after all the word patient comes from the Latin words for one who suffers so it's always been there and it probably always will be but as Durkheim wrote regardless of the patient's type of suffering suffering is like a gas that fills the room is all the people can think about my colleague Deirdre my lod has created I think a useful framework for thinking about suffering in healthcare there's avoidable suffering and there's unavoidable suffering unavoidable suffering is driven by the patient's disease and treatment includes a pain the side-effects the fear of where the disease is going to go and then there's there is the avoidable suffering that has nothing to do with the patient's disease and treatment and everything to do about how we work together the anxiety about delays the concern is created by confusion and lack of coordination our job in healthcare is not just to order tests and to perform procedures and to give treatments our job is nothing more or less than anticipating the suffering detecting the suffering preventing the suffering when we can and reducing it when we cannot it is a really hard job but it is a great job and patients are telling us how to do it my colleagues and I have analyzed data on millions of patients from inpatient outpatient emergency department settings and we find the same four factors drive patients peace of mind and therefore their likelihood of recommending the providers they want good clinicians they want them to be working well together they want teamwork they want good communication and they won empathy after you take those four factors into account waiting time pain control nothing else emerges as a driver of peace of mind and likelihood of recommending this is work that we understand how to do now we have to put patients in the middle and we have to organize ourselves around meeting their needs and reducing their suffering that is the right path forward for the complicated times in which we live to do that we need technical excellence and we need empathy health care providers you know we know we're good people we tend to take the empathy part for granted and we focus on the technical stuff patients on the other hand they take the technical stuff for granted and they worry about whether their clinicians really care about them it can't be a choice we have to be great at both the bottom line is that you can't have truly excellent care without empathy at its core the reduction of suffering this is where health care comes together thanks very much you


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