The patient voice – the need for a minimally disruptive medicine service

We are working as a multidisciplinary team to develop a service offering for patients with multiple chronic conditions that will reduce the burden of treatment while pursuing patient goals in primary care.  We are trying to learn as much as we can from other models such as PACE and Graded care.  We are also learning as much as we can from our colleagues in multiple disciplines and in public health.  And, of course, from our patients.

During an in-depth interview, one of our patients commented to the notion of a MDM service the following

I wouldn’t mind having like the whole team of doctors that I work with being able to sit down with them and look at the whole picture and decide a plan that would work out for all of my illnesses and how maybe I could avoid certain things or certain costs or just help me live better, period.

…I just think the biggest, most important thing in illness is having all the doctors be on the same page and know what is going on with you individually so that they can help you meet your best expectations and your best health.

Hi expectations we will have to satisfy if we are to make a difference to the workload/capacity balance of these patients.  Onwards!!

Minnesota to be first in nation to embrace ‘goldilocks’ medicine

This week marks the potential start of the implementation, evaluation, and eventual adoption of minimal,y disruptive medicine in Minnesota. Three events marked this week.

The first one involved the formation of a team that will be implementing MDM in a primary care practice. This iterative effort will involve identifying complex patients and figuring out what healthcare and the community can do to reduce treatment burden. This effort will be oriented by the application of the cumulative complexity model based on normalization process theory and the insights we have accumulated from interviewing patients.

The second development involves the publication in Minnesota Physician of an article about minimally disruptive medicine. A similar piece will be published in their publication for patients. The dissemination of the concept I thing creates the space and mind frame for experimenting with care delivery models with an underlying approach to care, not just with an underlying approach to reimbursement. The former being much more exciting and motivating than the latter.

The third development took place April 4th 2011 in Saint Paul, MN. Möbius Inc convened a citizens meeting to discuss healthcare. I was in the first panel along with Dame Jo Williams and Sanne Magnan from ICSI. Sanne and I turned to do a 1-2 on healthcare as we know it, making a big push to redesign the system, reducing it’s footprint, and pursuing more health based on community action. Groups got together later in the day around their areas of passion. Our group started working right away looking for ‘bright spots’ (AA, diabetic bus, habitat for humanity), thinking about pilot projects; and job-creation schemes that will connect the isolated, connect existing resources to people that would benefit from these but does not know of them or of how to access them (e.g. Dial 211). We were able to present our findings to the Commissioner of Health and other officials. Citizens power was never so palpable, and that some of them rallied behind goldilocks care is just awesome. More to come soon!

A patient ¨pushes back against physicians¨? Minimally disruptive medicine brought about by patients

This post in the Wall Street Journal highlights a point of view to which I keep arriving: clinicians may not be able to bring about changes in healthcare consistent with minimally disruptive medicine unless patients demand it.  A real patient revolution will be necessary to help clinicians realize a future that — as I learned from Judt — they cannot make happen because the ideology of the healthcare industry does not allow them to imagine it.  But patients may not yet be help by the same limitations.  This WSJ post is therefore, to me, a manifestation of hope.

How I came naturally to minimally disruptive medicine!

By Kevin Larsen, MD (Chief medical informatics officer, Hennepin County Medical Center)

I really love this concept since I first saw the opinion piece. I think I came to this naturally growing up with a brother who is a type 1 diabetic. In the early days of diabetes management it was maximally disruptive medicine – managing your life around your diabetes. Type 1 self management revolutionized this and when done right puts the patient in control of managing his/her own diabetes around their diet, lifestyle etc. I try to bring this approach to all of my patients conditions whenever I can.

Another aha! moment I had around this was at a site visit to a hospital in Panama. They had developed a program called “hospital at home.” Nearly all non-ICU patients had a one day stay or less in the hospital. The hospital arranged for doctors, nurses and therapists to go to the patients home, often multiple times a day to deliver care. They proved they had better outcomes with less falls, less delirium and it cost much less money. Plus patients loved it.

Minimally disruptive medicine finds a home in Minneapolis…

Over the last few weeks it is exciting to see the concept of minimally disruptive medicine take off.  At the IHI meeting, Maureen Bisognano highlighted it as an example of fresh thinking about patient-centered care.  In Minnesota, Mark Linzer and his team at Hennepin County Medical Center are considering implementing an MDM clinic to help the myriad of patients with multiple chronic conditions, burdensome workloads and reduced capacity (mostly through poverty and its accompanying maladies).

Mark says:

I have been trumpeting the idea of an MDM (minimally disruptive medicine) clinic all day, from a morning meeting with the head of our EMR to a noon meeting with the director of our journal club and a leader in evidence-based medicine, and at an afternoon meeting with our health care reform work group where i spoke about MDM being the basis for the future of health care in our county (through an ACO).  This concept has truly affected us!  I believe i can find some willing partners for a pilot of an MDM clinic at Hennepin County Medical Center!  The idea of doing MDM as a way of using only technology or medication for which there is excellent evidence of benefit and in a way that is minimally disruptive of the patient’s lifestyle, is one that is fascinating all of us right now!

This is really awesome and the MDM team at Mayo is very excited about the potential for this partnership, a fantastic opportunity to test Minimally Disruptive Medicine as a philosophy of care for patients with multiple medical conditions.  Thanks Mark and a big ‘thank you’ to your team!

Challenging my colleagues

By Victor Montori

I am often on the road discussing minimally disruptive medicine with colleagues elsewhere. For some reason I never hear disagreement with the basic statements of concern (we are responsible for some of the non adherence by virtue of our endless and uncoordinated demand for more work on chronically ill patients with multiple comorbidities). When I suggest something needs to be done about this, e.g., reject disease specific quality and performance measures, work for integrated care around patient needs, assess and reduce treatment burden, I get a sense of impotence, of inability to create change, to truly advocate for the patients’ interests. Why do you think this is the case?

When patients opt out of their medical care, we think it is because they may be ignorant about the implications of disease and the effects of treatment.  This intentional noncompliance sounds to me as a target for improved communication and education.  Even shared decision making.  If patients make informed choices about what to do and what not to do, that is not noncompliance.  That is informed patient choice.  An exercise of people’s values and preferences with full understanding of the opportunity costs of taking and not taking action in their specific context. This is sometimes confused, but some folks understand it – e.g. this article in LA Times.  The focus of my attention, however, is poor treatment fidelity – poor follow-through with an agreed upon plan of action.

Poor treatment fidelity can be caused by our transferring to patients the demands for optimal care we feel as part of misguided performance improvement campaigns, by poor care coordination, and by blindness to the burden of treatment and to the (limited or shrinking) capacity that patients and family have available or able to muster to implement treatments.  It is this reality that is within our reach and, as I indicated in the first paragraph, it is something about which I find professionals feeling impotent.  Why?

My colleague Barbara Koenig pointed me to this article by the late historian Tony Judt commenting on the work of Czeslaw Milosz and specifically on The Captive Mind.  The key phrase Judt offered that seems pertinent to this discussion is: “Above all, the thrall in which an ideology holds a people is best measured by their collective inability to imagine alternatives.”  Is the impotence I have observed the result of this inability to imagine alternatives?  Can minimally disruptive medicine offer these?

Simplifying may not always be simple

A patient overwhelmed with the complexities of her program should prompt a simplification of her treatment. But what happens when simplifying, i.e. changing, has a new and steep learning curve and disrupts established routines? How should minimally disruptive medicine (MDM) deal with this problem.

A patient comes to see her diabetes doctor every 3 months at great burden to her (get a ride, company, time). When the MDM clinician seeks simplification of the follow up schedule with less intense schedule the patient feels abandoned. What is the role of e-health in this setting?

At a meeting of entrepreneurs in Minneapolis, MN I challenged them to consider patient disruption as a target for innovation and non disruption as a design criterion for new technologies for patients with chronic disease.

And the challenges of this new approach keep piling up…

Why patients with diabetes skip insulin doses?

While the study design cannot provide an in-depth picture (a qualitative analyses would), this Internet survey sought to identify correlates of why people would skip insulin doses (which a substantial proportion of patients reported doing: 57%; 20% reported skipping doses regularly).   Of note for our discussions in this blog is the prominence patients give to interference with daily activities.  This indicates patients directly indicating that a cause for nonadherence is the disruption to their lives caused by insulin use.

With very thin data to support this recommendation, many diabetologists are promoting the early use of insulin in patients with type 2 diabetes, the most common form of diabetes.  Since insulin use requires closer monitoring of blood sugars to manage the dose of insulin and avoid and manage low blood sugars, insulin-containing programs may be quite disruptive.  This paper adds that injecting the insulin can also be disruptive (in terms of effort and schedule I suspect given the correlation with more frequently prescribed injections) and embarrassing to some.

In my practice, I tried to address this with my patients, particularly those who need insulin to avoid symptoms of high blood sugars.  For these patients, I suggest the use of insulin pens and, when appropriate, insulin pumps.  However, the cost of these technologies has made them less accessible to my patients in these times of economic crises.  Thus, clinicians would have to review with patients their goals of care to determine whether, when, and how should insulin be used to manage their diabetes.  Calls for early use to protect the beta cell seem to ignore or at best place a lower value on avoiding or minimizing these challenges.

Lack of treatment fit also impacts smoking cessation tools

CNN reports on the death of the captain of the ship featured in the TV show “The Deadliest Catch” from complications of a stroke.  His son attributes his death to his bad habits, including smoking.  What caught my attention was the last statement by his son in this CNN quote:

“He did cut back on energy drinks, quite a bit from what he’d usually do,” Josh said, “but [doctors] have determined that smoking was the cause of this, and that was always his biggest habit. He had changed a lot of his habits but just could never kick the smoking. He started working with that electronic cigarette but, not used to it, he didn’t know how to charge it. He just kept smoking.”

The LA Times offers another glimpse of Minimally Disruptive Medicine and Diabetes

Jill Adams has written a very nice piece about the challenge before patients with type 2 diabetes seeking to decide how much they need to do to manage their disease and prevent complications.   The piece goes further and cites our group in seeking “good enough” diabetes control and mentions the work of being a patient.  Ms. Adams writes:

Montori notes that a good-enough blood sugar strategy would also ease the sheer time and energy it takes to manage diabetes. Treatment regimens — with frequent doses of pills or insulin, blood-sugar monitoring and doctor visits — are complicated and burdensome, particularly in patients who may be elderly and have other chronic conditions, such as high blood pressure and high cholesterol. One estimate of the time patients spend taking care of their condition, if they follow all the advice of their doctors, is 143 minutes per day. “That’s as much as a part-time job,” Montori says.

The link to the full article (LA Times, Oct 26 2009) is here