The last few weeks have seen a surge in discussions in the press about minimally disruptive medicine. The Wall Street Journal had a piece as did the Star Tribune in Minnesota here. This press in turn has led to a number of people to reflect about healthcare and to contact our research team to test the model out.
Meanwhile two teams are working on measuring treatment burden, and two reviews are considering how the Cumulative Complexity Model can help understand the (in)efficacy of lifestyle modification interventions and readmission prevention interventions. Much to do everywhere to lift the burden off patients with multiple chronic conditions.
Importantly, I think, our group has been producing some synonyms that begin to draw in the mind’s canvas different paths toward Minimally Disruptive Medicine:
- Palliative care for those far from the end of life – focus on quality of life, function, symptoms, in achieving patient goals
- Geriatrics for the young – be parsimonious, mindful of comorbidity and limited capacity (the younger parallels with frailty and life expectancy)
- Goldilocks (not too much, not too little, just right) – it is not only about reducing healthcare, it is about optimizing the healthcare footprint making sure that under use of desirable interventions is addressed as well.
- Wellness for the sick – emphasize function to increase capacity as part of the strategy to reduce treatment burden.
What other parallels can we draw? What else could we learn about these disciplines?
The quest to reduce the healthcare footprint on the lives of individuals and communities presses on. The response from the audience at the 2013 ICSI Colloquium in St Paul, MN was quite telling: clinicians wondering how to overcome the impotence they feel as they comply with guidelines, care processes, and public reporting that they feel makes them deviate from patient goals; patients echoing my call for patients to lead a revolution in healthcare. Indeed, a patient from Texas, who pertinently had the last word at that ICSI presentation, made an impassionate plea for change, for patient-centered care, for minimally disruptive medicine. She then proposed: Let Patients Lead. This moved me and reminded me of a friend’s friend who in reviewing the concept said that he felt this should be renamed Maximally Generous Medicine. Another synonym to inspire our journey.
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
In a fascinating account, and writing for the Altarum Institute blog, Janice Lynch Schuster reveals her discovery of the work of being a patient and relates this to our conversation about minimally disruptive medicine. This is among the best written accounts of MDM available and I highly recommend it.
On a personal note and in response to Nathan Shippee’s comment to the article, she adds:
The approach makes so much sense to me–both personally, in my own experience, and more generally, when I think of what it means for people to live with multiple, long-term chronic conditions. I appreciate the point you make, about workload-capacity imbalances increasing over time and presenting even more hurdles for patients. I wonder how people can address these imbalances — or how their clinicians can help them to do so.
The call for action is there. So much to do.
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.
by Stephen Evans, MD (geriatrician, New York)*
A dilemma exists in implementing the role of Care Navigator, when that care management role includes translation of medical treatment choices for patients and their families; how is the Navigator to assist patients/families to understand when an intervention is more or less likely to cause overall benefit or harm, especially in the usual situation of multiple simultaneous co-morbidities?
Physicians know (or should know) that, as people age and accumulate disabilities, more aggressive interventions may be as likely to cause harm as benefit. We call this transitional time in patients one of increasing frailty, in which frailty is defined as vulnerability to adverse clinical outcomes; I wonder if taking frailty into account might make the Care Navigator’s job clearer in the Minimally Disruptive Medicine care model.
Several studies have shown that frailty in either of two constructs (the Hopkins/Fried Phenotype or the Rockwood/FI-CGA) predicts quite powerfully patients’ likely benefit or harm from interventions. It’s easiest to think of “vitality” or normal adult functioning as one end of a spectrum, with “frailty”, with decreasing functioning at the other end, and the challenge is to assist a patient/family to understand where the individual patient sits on that continuum of vitality-frailty; placing a patient on that spectrum makes it easier to consider the likely benefits/risks of treatment.
Our group uses the FI-CGA, which has a wider mathematical “spread”, allowing more nuanced measurement of a patient’s frailty in this way. We use the patient’s score to contextualize shared decision-making among patients/families and caregivers.
So, a patient who is “vital” (not frail, such as, for example, the 95-year-old still playing tennis regularly) has a much better chance of a successful outcome with a hip fracture repair than a frail 75-year-old with a history of stroke with dementia, depression, and physical disability. At the same time, no tool, including the FI-CGA, predicts which patients will do well or poorly at different levels of frailty or vitality, so we try never to say “you should” do one thing or the other. Rather, we outline the choices, the patient’s frailty, a ballpark sense of what the patient’s status could be with or without the intervention, and then try to help the patient/family determine which treatment choices they prefer given the attendant risks and benefits of treatment or non-treatment of acute or chronic illness.
Studies published recently suggest that frailty measurement may be the best way to assist geriatric patients/families and caregivers to understand their risks and benefits before embarking on treatment; frailty may assist Care Navigators in their management/translational roles as they apply the Minimally Disruptive Medicine care model to these patients in the future.
*Disclosure: Dr. Evans is founder of Videx-US, a company that offers clinical decision support software for elderly patients based on the Rockwood/FI-CGA to place patients in the vitality-frailty continuum.
by Allison Verdoorn
Designer researcher, Mayo Clinic Center for Innovation
Meet Susan and John. They are an active retired couple who enjoys traveling and visiting their grandchildren. John has multiple chronic health conditions including diabetes, high blood pressure and arthritis. Susan serves as John’s primary care giver and manages his medications and health conditions. The amount of work they must do to deal with John’s medical conditions is in balance with their capacity to do that work and achieve their larger goals.
In the Minimally Disruptive Medicine care model, John is assigned a Care Navigator, Frank, because of his multiple chronic conditions. Frank works with Susan and John on a frequent basis both by phone and in person to address any issues John might have either socially or medically. Frank is especially interested in any goals the couple has like traveling and losing weight and takes care to make sure any care plan is in line with the goals. Frank has access to a database of social service connections and is a member of John’s health care team so he is able to relay relevant information back and forth from John and Susan to John’s care team.
John suffers a stroke that hospitalizes him.
In the traditional medical model, John is seen by multiple specialists, each with different plans of care, diets and medications. Often these visits take place when Susan is not able to be present and the couple is left to reconcile all of the information they were given when John is released from the hospital. While his capacity has been reduce by illness his workload has increased with new diets, medications and plans.
In the Minimally Disruptive Medicine model John is cared for by a care team that includes physicians, dietitians, pharmacists, social workers, nurses, a care manager and care navigator. This care team consults carefully with specialists to ensure that a cohesive plan of care that aligns with John’s goals and work capacity balance is developed.
A care manager, Lucy, works with Frank, the care navigator, to ensure that the clinical goals of the care team work with and not against John and Susan’s goals and desires. The care manager serves as a counterpart to the care navigator as a liaison to the clinical team.
John is released from the hospital.
In the traditional medical model, John is sent home with a confusing dismissal summary, multiple new medications, conflicting diet plans, and two different rehab programs. John and Susan are unsure who to contact for follow up questions and instead try to make due as best they can with the information they have. Both John and Susan’s work to care for John has been increased while John’s capacity has been greatly reduced due to his illness.
In the Minimally Disruptive Medicine model John and Susan leave the hospital with a care plan that was discussed with them before leaving. The care plan is sensitive to the goals John and Susan are striving towards and includes contact information for their care team. John and Susan can call Frank with questions and concerns and Frank provides them not only with clarification but also community resource connections. Frank reports information directly to Lucy who is able to relay updates to the care team on a regular basis. Frank pays special attention to the couple’s work capacity balance.
In the traditional medical model, John’s health continues to decline and the stress of the situation and caring for her spouse begins to affect Susan’s health. The work she must do for John is a huge burden for her.
Susan feels she is becoming depressed and is no longer able to function at the level she had before the hospitalization. Because of this Susan’s capacity to do the increased work is reduced.
As Susan falls into a depression her ability to care for John is reduced and John’s health declines further.
With few resources, John and Susan continue to manage their declining health on their own.
In the Minimally Disruptive Medicine care model the care team continues to meet regularly even after John’s release from the hospital.
Physicians, nurses, care managers, care navigators, pharmacists, social workers and dietitians work together to make sure the plan of care that is developed reduces the amount of work the couple must do and increases their capacity to do it.
When specialty consults are necessary, the team reaches out to the relevant specialist and then brings the recommendations back to the larger group to ensure they are inline with the larger plan.
The team utilizes a dashboard to allow for an accurate understanding of the John and Susan’s work and capacity levels.
In the traditional medical model, John’s capacity continues to decline as his conditions are not well managed. Additionally his work has not been reduce and has in fact increase now that Susan is struggling with problems of her own.
The traditional medical model has placed John and Susan in a seemingly never ending loop that continues to add work to their lives while providing no additional capacity. John will struggle to improve over time and will likely continue to have expensive hospitalizations.
In the Minimally Disruptive care model John and Susan’s work and capacity balance is carefully monitored by their care team.
The care team develops care plans that help the couple
The New York Times offers an OpEd written by Jack Resnick, a NYC solo internist. In this article, Dr, Resnick discusses delivering care at home and highlights the health and economic opportunities afforded by this practice, particularly among the elderly and highly disabled. Of course, these patient groups are often complex and have multiple comorbidities.
The opportunity afforded clinicians who assess patients at home is that of a highly detailed understanding of the context in which caregiving (including self-care) is taking place and on the ways care is being implemented.
A colleague working a few years back in the Peruvian jungle noted that pill blisters were accumulating around a religious icon sitting on a shelf. The patient felt that this was the way in which these medicines would be most conducive to improved her health.
Clinicians accessing patients at home also reduce access barriers to care and can make care delivery fit the context of these patients and their caregivers. By clinicians I mean not only physicians but also nurses, pharmacists, social workers, dietitians, coaches, and other healthcare workers.
As consultants and sales people know, travelling to make sure you have enough face-to-face contact is important to develop relationships and make fruitful connection. Chronic care delivery clinicians know the same thing. As both are finding out, tools to achieve that connection cannot replace the power of the personal visit, but certainly supplement it. To make models of home care affordable will require a combination of in-person and technology enabled contacts, with the former always administered in sufficient dose before shifting to the latter.
Healthcare reform in the US has provisions to support Independence at Home Organizations. Very little research into technologies to support home care delivery and in ways to support and enable the informal care network that is home-based exists. It would be critical when developing rules for these organizations that the burden they may impose on patients and caregivers be kept to a minimum by design, that they connect with communities to improve patient and caregiver capacity, and that they proceed efficiently in a patient-centered fashion.
That this connects with Minimally Disruptive Medicine is hinted by Dr. Resnick himself, the author of the OpEd. He states:
For too long the institutions that make up our health care system — hospitals, insurers and drug companies — have told us that “more is better”: more medicines, more specialists, more tests. To rein in spending and deliver better care, we must recognize that the primary mission of many an institution is its own survival and growth. We can’t rely on institutions to shrink themselves. We need to give that job to patients and their doctors, and move health care into the home, where it is safer and more effective.
Perhaps too much to ask of a single solution set, but perhaps not. For those who are home bound and for those for whom the current system fails them by overwhelming them, home delivered care may represent one more tool to deliver care that fits.
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.