Juan Irigoyen ha escrito un excelente testimonio que subraya la importancia de reorientar la medicina para pacientes crónicos hacia formas mínimamente impertinentes. Aquí su excelente ensayo: Derivas Diabéticas
We have discussed how caregivers share in providing capacity to patients with multiple chronic conditions. We have also discussed how blind usual care is to the role (and health) of caregivers. In this excellent interview in the Prepared Patient forum blog, Gail Hunt, president of the National Alliance for Caregiving, speaks of the demands placed on caregivers by the healthcare system, of some efforts to pay attention to this and improve outcomes. In minimally disruptive medicine, we need to match demands to capacity and in considering the capacity, we need to focus our attention on both patient and caregiver. This view from the caregiving community adds face validity to these efforts. Well worth the read.
To deliver minimally disruptive medicine, it is key to reduce the workload and enhance the capacity of the patient while pursuing patient goals.
Often, the workload is not faced by the patient alone – a caregiver shares the load. Sometimes, the caregiver carries all of it. Caregivers are seldom compensated for their work, they give up a lot, and their health and other needs are poorly addressed.
Some patients with multiple chronic conditions cannot recruit caregivers because they do not look disabled or terribly sick. Without caregivers, these patients cannot face the workload the healthcare system imposes on them.
Thus, caregivers (or their institutional substitutes) are a key component of a system of healthcare delivery for the 5% of patients with multiple conditions that accounts for the majority of healthcare costs.
These series of collated thoughts (a propos of the national caregiver month) regarding caregivers and their role and about some important efforts to support them are important for those who are working to design a healthcare that fits the lives of these patients. Think of the caregivers, honor their role and support them to ensure that their workload does not exceed their capacity.
In our quest toward ‘goldilocks medicine’ we traveled in mid November 2011 to St. Louis Park near Minneapolis, Minnesota. We were invited by city officials and organizations — including Park Nicollet Medical Home Program and Park Nicollet Foundation — convened by Marjorie Herdes and William Stockton from Mobius to discuss new city initiatives.
I shared some new thoughts along with some standard stuff about minimally disruptive medicine. The new thoughts refer to the role communities can play in reducing the burden of treatment for patients with multiple chronic conditions.
They were particularly impressed by data from Mayo Clinic showing that patients with 3 or more chronic conditions account for 5% of Medicare patients and incur 50% of all healthcare expenditures. These data is similar to that reported several years ago from the MEPS; as opposed to what I would have predicted this 5:50 rule appears to have remained the same for the last 15 years (see this from 1996 and this from 2008). Also, the latest report from the MEPS (2008) identifies 10% of the population now accounting for 60% of all healthcare expenditure. This group is most likely female, poor, of an ethnic or racial minority and with poor self-rated health. Of note, 1% of the population accounts for 25% of healthcare costs!.
Returning to the 5:50 rule – the fact that counting comorbid conditions can identify this group offers an opportunity for targeting folks on the basis of their complexity. The challenges of this 5% include a very large burden of treatment which often exceeds the capacity of patients and of their caregivers and leads to reduced healthcare access and use, and poor self-care, i.e., to bad outcomes.
While the Chronic Care Model and other forms of intensive primary care can enhance the quality of care for patients with chronic conditions, these models have failed to account for the workload-capacity imbalance that often characterizes these patients and leads to waste and poor outcomes through poor treatment fidelity.
What could organized communities do about this? How could they improve patients’ capacity to face the workload of comorbid chronic disease, improve their health, and bend the cost curve?
Many ideas were considered and discussed, greatly facilitated by the work our colleague Nathan Shippee, a brilliant sociologist, has been advancing to understand the balance of capacity and workload in these ‘five-percenters’.
Capacity seems to result from marshaling resources in the following domains:
- Personal: resilience, physical and mental function, quality of life, self-efficacy, literacy, education, values
- Medical: design of healthcare services, accessibility and outreach, care coordination
- Financial: transportation, communication, housing, coverage, access
- Social: emotional, social, and instrumental (practical) support
- Contextual: neighborhood design, healthy environment and resources, location, safety
Community programs that could provide resources in one or more of these domains could partner with primary care medical homes focused on this population and help enhance their capacity to face the existing (and hopefully shrinking) workload of being a chronic patient.
Turns out that at St. Louis Park there are already many organizations and programs that offer services that could enhance capacity for patients and caregivers. Everyone in the room agreed that the challenge is to make eligible folks aware that these services exist, often at no cost to the beneficiaries.
Of course poor access to help is a hallmark of an overwhelmed patient, one whose workload exceeds their capacity. Thus a key priority is to work with existing programs to explore how much work does it take to access and use their services and to redesign their offerings to reach out to these folks in a minimally disruptive way.
This innovation – of communities that reach out to patients and caregivers to optimize their treatment burden – may hold an important key in improving population health, enhance the experience of care, and bend the cost curve, probably in that order. Given that many of the patients are relatively young, the community will benefit not only from lower per capita healthcare costs but also a closer-knit community with its members contributing to its development and well being. And they would help healthcare systems produce better outcomes as they pursue minimally disruptive medicine. Seems like it will take a village.
We have been concerned about the role that guidelines could play in overwhelming patients. This leads to practitioners considering guidelines as mandates for quality, often overriding patient context and patient values and preferences. In the case of diabetes, there is a big concern that many guidelines reflect the interests of for profit interests on professional organizations that formulate these guidelines.
Last year, the VA, led by Pogach, Aron, McConnell and others, produced guidelines that take a different approach – a patient-centered one! To learn more about these guidelines, there is a very interesting discussion in this podcast.
In this podcast, Mark McConnell from the VA in LaCrosse, WI discusses with the Therapeutics Education Collaboration hosts about the evidence in support of diabetes control and how this should be translated in care that fits the life of patients with diabetes. A valiant effort indeed to reduce the way this care can disrupt people’s lives!
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!!
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!
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.
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.
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).
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!