Victor Montori: Welcome. This is Victor Montori on behalf of NEJM Catalyst, and I’m speaking today with Carl May of the University of Southampton in England. Carl is a Professor of Health Care Innovation and leads the Complexity Patient Experience and Organizational Behavior Research Program there. Carl is also a collaborator with a number of universities around the country including the Mayo Clinic in the United States.
[I’m also speaking] with Frances Mair. Frances is an academic GP and Professor of Primary Care Research at the Institute of Health and Wellbeing at University of Glasgow, where she is the Head of General Practice and Primary Care. Carl and Frances and a group at Mayo Clinic have been working for a number of years on a topic that I think is of great importance to the audience of NEJM Catalyst and is an aspect of patient-centered care that relates to minimally disruptive medicine. Welcome, Carl. Welcome, Frances.
So to get us started, Frances, can you get us going with what you think are the aspects of health care that cause patients and their caregivers to work harder to get the care that they need?
Frances Mair: For me, one of the biggest problems is this focus that we have on diseases rather than the people or the individuals we’re caring for. That’s articulated in our clinical guidelines that again focus on diseases and don’t really take account of comorbidity when we know that multimorbidity — when a person has two or more long-term health conditions — is increasingly the norm even in younger age groups, particularly in those who are more vulnerable and socioeconomically disadvantaged. In the U.K. we’ve just produced a multimorbidity guideline, but that’s very unusual and innovative, and certainly our focus on diseases rather than on people prevents us from providing really person-centered care and holistic health care.
Montori: Carl, medical sociology has dealt with this issue of confusing the patient and the person’s experience of illness and health with the labels, with diseases and other things. So is this problem of adding too much work because of the focus on disease a new problem, or is it just coming to a head because of the greater availability of ways of managing those diseases?
Carl May: I think the answer to your question is both. I think that patients and caregivers experience increased workload for important reasons, which is that there is so much more work to be done. That comes from two directions. First of all, it comes from what we just talked about, which is the growing problem of multimorbidity. The growing problem of multimorbidity in steadily older populations, so you have populations that are progressively, over time, less able to do the work.
It also comes from the fragmentation of care that we get in big, super-specialized health care systems where in fact there’s often no organizational bridge between different disease types. So it’s entirely possible across the developed world to be someone who has diabetes and someone who also have Crohn’s disease, as a good example. Where the workload is doubled because there is no bridge between the two clinical specialisms of endocrinology and GI medicine.
So you have this thing where people are doing not just a lot of work, but a lot of additional work, because they’re having to do what Phil Strong used to call medical errands. They’re having to carry bits of stuff from one specialism to another and constantly repeat their story and often constantly repeat their tests to satisfy the insatiable demand of health care systems for highly siloed health care.
Montori: Is this an argument for better design, more convenient health care? Or is this an argument for a bigger role for generalism as a key glue or coordinating component of it, or is this an argument for better coordinated systems focused around patient needs? Are we simply talking about issues of convenience and usability here, or is it something more profound?
May: I think it is very fundamental, Victor. I think much of it is to do with the way that we train doctors and nurses, and we direct them into highly specialized roles. General internists have almost vanished from British hospitals. I’m sure that there’s some truth to that in the really big specialist hospitals in the U.S., too. We super-specialize our health professionals. That makes it hard for them to build the bridges that I’m talking about. The whole organization of medical specialties will be changing radically in the next 30 years as we see the effects of stratified medicine and genomics really coming into play. But at the moment, we’re still stuck with something that a doctor from Victorian England would recognize in terms of the distribution of specialties and organization.
Mair: I might interject here and say that being a family practice doctor means that I am going to say that I think there is an issue about the move away from generalism to that super-specialized care for these populations and these health care challenges that are the main ones for this century, which is that complex patient with frailty and multiple complex care needs.
You talked about usability and convenience and those are really important. Yes, we want [it to be] feasible for people to attend appointments, to be scheduled at convenient times and make medication regimes easier, but it’s also about the work that people have to do because of the poor level of care, coordination, and lack of continuity and the problems of fragmented health care systems that, as Carl said, means you have to explain things over and over again, which is frustrating but also increases the chance of error.
Also, we get disagreements between health care providers regarding the correct course of action, what’s going to be best. You therefore have a patient trying to negotiate and navigate and work out whose advice do I take, and just trying to work out the implications of their treatment can be challenging and is another form of work that we need to consider, and how we can rationalize that and make that easier for people to deal with.
Montori: Why is the solution not what some health care systems in the United States have been trying in the last few years, which is to train and hire lower-skilled professionals or paraprofessionals, navigators, community health workers who supplement the ability of patients and caregivers to navigate these complex systems? Why is that not the solution to this problem?
Mair: It could be part of the solution. I think even as a generalist, as a primary care physician having somebody who can help do some of the administrative work and do some of the organizational work on behalf of a patient, I personally don’t need to do all of that. I need to be overseeing it and a bit like the conductor of the orchestra. I need to be able to have various people who have their roles and play the different instruments, but the patients may well benefit from having a care navigator who can help them manage things.
You also need somebody who can deal with complexity. The problem with having people who are less well-trained and able is that they can follow guidelines of a set kind but have more difficulty in dealing with complexity and complex care needs, and when things fall outside of a guideline what to do next. That’s why I think you do need that coordinating role of someone who is quite skilled and able.
I do think having ancillary help and assistance of other roles is useful too, so long as they don’t add to the fragmentation and they don’t become part of the problem, and they become part of the solution instead.
Montori: Yeah. It sounds like there is a fundamental, systemic intervention that these professionals are palliating to some extent, and perhaps even delaying the change or the fundamental change that is necessary because they’re helping the system and the patients cope with the mess. Let’s go back to the patients and the caregivers. When the work that is these medical errands that you mentioned, when the work that’s assigned to them overwhelms their ability to cope, what do we know about the ways that patients and caregivers use to cope with that burden? What happens when they can’t cope?
May: There are two things that happen when they can’t cope. The first is something that you and I and Frances in our 2009 paper on structurally induced non-compliance, by which I mean people just stop doing the work. That’s consistently revealed in primary studies and in systematic reviews over the past few years. People become extremely selective about the tasks that they perform, the appointments that they go to and the tests that they do at home. Sometimes they become very selective about the medications that they take.
What that gives the impression of is nonadherence to rational treatment regimens, but what it often reveals is that people are being asked to do too many things, and often things that they don’t fully understand in relation to complex symptoms. [In] a systematic review that I’ve just brought out in BMJ Open, we point to the way that multimorbid patients toward the end of life often have real difficulty in linking symptoms to their causes. They experience their multimorbidity often as a really undifferentiated big bundle of symptoms that they find hard to trace back, and indeed their clinicians find hard to trace back to specific pathological causes.
So people will stop doing the work when it gets too much for them or they will try to distribute the work across a bigger network. They’ll try to exploit their family and sometimes their friends to take on some of those tasks, to delegate some of those administrative and organizational tasks for them to do. Anybody who’s ever had a parent or an older loved one with dementia will know exactly what I’m talking about, how gradually the burden of work there is shifted from the person to their social network and to their family. There’s a powerful example of how that works.
Mair: I think there’s a real issue about how fragile that situation can be because if that caregiver themselves has a myocardial infarction or develops cancer or suddenly dies, then the whole support network falls apart and suddenly you can have a patient who was just about managing who certainly is no longer doing so.