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
Caregiver Corps: Tapping A Nation of Caring People
By Janice Lynch Schuster
I recently participated in a Twitterchat (#eldercarechat), where someone raised the question of what we want government to do to improve the lives of the nation’s 60 million family caregivers. Someone suggested creating a Peace Corps-like program to recruit new graduates to serve family caregivers. I immediately volunteered to launch a petition to do just this, and wrote one on the White House website, which encourages civic engagement.
My petition is very short. It seemed to me that in the context of trying to raise interest and garner signatures, I needed to be to the point (http://wh.gov/GURc). It reads:
We petition the Obama Administration to: Create a Caregiver Corps that would include debt forgiveness for college graduates to care for our elders.
More than 60 million Americans are family caregivers. They face challenges: Health suffers. Finances suffer. Families suffer. Aging Boomers will overwhelm our caregiving resources. Let’s create a Caregiver Corps, that would marry college debt forgiveness with programs that place recent graduates with families and aging services providers. Let’s bridge the generational divide that promotes ageism. Let’s do it!
One of my Twitter followers admonished me for my lack of detail. Without it, she said, no one would would take me seriously. The idea is in its early stages, and would require thoughtful analysis and number-crunching by experts. But in the meantime, here’s the general idea for it.
Why We Need a Caregiver Corps
Several demographic trends are creating a future that will leave families and our beloved elders overwhelmed, exhausted, and bankrupted by the challenges of living with old old age–that is, living past 80–with multiple chronic conditions that will, no matter what they do, kill them. In any given year, some 60 million Americans serve as family caregivers to another adult, someone who is either old, disabled, or both. (And millions more care for children and young adults who live with serious disabilities, and face even more challenges in terms of education, employment, and so on.)
These families will run square into a medical system that is not prepared to care for them in the ways the need most. These individuals might sometimes need rescue and cure—but they will more often need long-term supports and services, and help with things like transportation, hygiene, and food. And while they’ll have plenty of access to ICUs and new hips and knees—they will be shocked and disheartened by the costs of all the things they will need to pay for on their own: private-duty nurses, for instance, and home care; transportation and food and skilled nursing care. Unless these families spend-down to become Medicaid beneficiaries or have adequate long-term care policies, their costs will be out of pocket. And those costs will be beyond reach for most middle-class Americans.
In the meantime, the social services agencies meant to serve aging Americans continue to be devastated by short-sighted budget cuts. Sequestration alone, one estimate suggests, will eliminate 800,000 Meals on Wheels in the State of Maryland.
And there will be few people to provide the hands-on care that these adults will need. The nation faces a profound shortage of people trained in geriatric care, from geriatricians to nurses to direct care workers. These shortages stem, in part, from the relatively low pay geriatricians earn, and the outright unlivable wage direct care workers receive. By one estimate, by 2030, when all of those Boomers are in their dotage, there will be one geriatrician for every 20,000 older adults.
A Caregiver Corps: Hope—and Help–for Us All
What’s a country to do? Launch a Caregiver Corps, a program modeled on similar valuable, successful, and long-lived efforts, such as the Peace Corps, AmeriCorps, VISTA, and Teach for America. The program could recruit volunteers: high school graduates not trained for the workforce; college graduates facing a tough economy and huge undergraduate debt; and older adults, those healthy enough to want to remain in the workforce and contribute to others’ well-being.
Volunteers could sign up for a year or two. In exchange for their service, they could earn tuition credits to cover the cost of college; they could receive some degree of loan forgiveness, to lessen their burden of debt; they could be paid a stipend that acknowledges the value of their work. They could be assigned to community-based organizations that serve older adults, such as Area Agencies on Aging, non-profit health care institutions, social services agencies, and others.
While volunteers could offer enthusiasm, compassion, and insight, they could also learn the kinds of skills required to care for an older adult and his or her family. They could learn about the public policies that affect that care. They could acquire medical and nursing skills—the kind of skills family caregivers use routinely in their daily routine. They could be exposed to older people, and bridge the generational gap that splits our country on this demographic. In the end, they might even be inspired to pursue a career that features caring for one another.
That, it seems to me, is something Americans have always done best—and will have to do more, as we all reach our own old age. Developing people who have the skills, resources, and motivation to help us in our self-interest. And it is in theirs, too. Millenials face the highest unemployment of any group in the country, and finding ways to become marketable, employable adults is critical to their own security and future.
So, let’s try it. Let’s create a Caregiver Corps. Let’s get the Administration to think about it, and weigh in. It’s time, really, to move forward. We need 150 signatures to push the petition to the public pages of We the People. Please take a moment to add yours:
Janice Lynch Schuster specializes in writing about aging, caregiving, and end of life issues, and is a co-author of an award-winning book on the topic, Handbook for Mortals: Guidance for People Facing Serious Illness (Oxford University Press, 2012).
Short films to discuss polypharmacy? Why not. The entries to the First Short Film Festival about Polypharmacy and Health are here. These are great, instructive, fun, reflective, and artistic. Which one is your favorite? Why? Simplifying treatments, drugectomies, physician-assisted noncompliance, medication therapeutic management – all of these reflect the need to reduce the burden of treatment imposed by complex, often unnecessary, and frequently unsafe medication programs.
GuiaSalud en España desarollo una jornada sobre guias practicas clinicas y pluripatologia en la que se pudo discutir sobre medicina minimamente impertinente. Aqui las ponencias: http://www.guiasalud.es/jornadas_cientificas/13_jornadas/index.html#presentacion3
By Nathan Shippee
MDM needs a toolkit for people who are interested. This is not my idea originally—I’m just a messenger. As a junior researcher fortunate enough to be involved in minimally disruptive medicine (MDM), I’ve been able to collaborate with and learn from great people like Victor Montori, Frances Mair, Carl May… the list goes on.
Yet, for all our efforts, MDM remains a good concept, but one with arguable impact. Our research has shown that treatment burden is a real and measureable thing; that managing chronic conditions is complicated and work-intensive; and that medicine needs to recognize the balance between the demands placed on a patient and his or her capacity to handle those demands (see the MDM blog’s Jan 9th post for a bibliography). However, what have these realizations done for patients?
At Mayo (at least while I was there), there was mixed success (Victor mentioned this here). In trying to merge MDM into primary care, for instance, MDM-interested people were able to help some patients in simplifying medications, lab tests and diet, but also encountered barriers, such as problems in changing all the forms patients are asked to complete (especially when they visit multiple specialties at the clinic) or the way visits are scheduled to consolidate them and improve convenience.
We’ve been contacted by providers at other clinics who have read some of this work. Some have had interest in tools to measure the complications in patients’ lives; others have been interested in provoking culture change by educating their colleagues about the difficulties and challenges that patients face.
People at the core of MDM have discovered that it may be impossible to change how medicine is delivered at a given clinic or practice due to institutional inertia, difficulty in getting professionals to buy in, and so on.
Instead, there is a different idea: to provide a toolkit for people interested in MDM and its implementation, built upon existing evidence and collected findings, suggested scales and new measures, and more, in order to promote a broader impact for MDM on common practice and pm patients’ lives.
Therefore, here is a teaser for what might become a dominant theme in MDM: it is time to create an MDM toolkit—a clearinghouse, go-to place, or whatever one might call this single source for tools that help make MDM to be useable and to have an impact.
Initially, such tools might include:
- background and literature developments supporting MDM, including bibliographies of recent papers (like the one on the MDM blog);
- ways to build knowledge and motivate and culture change, such as presentation slides, conceptual model outlines, graphs, and other material to promote MDM concisely and directly;
- shared decision making tools to improve the involvement of patients’ informed preferences in medical decisions; and
- survey items or measurement approaches people can use to assess and track healthcare-related overburden and workload-capacity imbalances among patients. Later, based on widespread testing of these tools and focused intervention studies, we might add validated screening tools, field-tested and evidence-based components for building MDM interventions, and updates to our conceptual models and statistics about the solutions to patient overburden, healthcare-related disruption, and lack of support for patients.
This toolkit may sound ambitious, but it is reachable. Developing individual tools that can be picked up for free, piecemeal, and used in practices may be the most far-reaching, and yet also most feasible, approach to ensuring that the promise of MDM reaches its intended beneficiaries—patients.
We welcome your thoughts. What would you add or take out of the toolkit?
One of the key aspects of minimally disruptive medicine is the need to become aware of the burden that our treatments cause on people’s lives. This concept, of burden of treatment, relates to the distress (including suffering, interruption, inconvenience) caused by treatment-associated demands for time, attention, and work. We know very little about it, but our international team is working toward clarity in this area.
Some important studies have been recently published and I bring them here for your attention:
1: Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, Montori VM. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas. 2012;3:39-49. doi: 10.2147/PROM.S34681. Epub 2012 Aug 24. PubMed PMID: 23185121; PubMed Central PMCID: PMC3506008.
2: Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med. 2012 Jul 4;10:68. doi: 10.1186/1741-7015-10-68. PubMed PMID: 22762722; PubMed Central PMCID: PMC3402984.
3: Jani B, Blane D, Browne S, Montori V, May C, Shippee N, Mair FS. Identifying treatment burden as an important concept for end of life care in those with advanced heart failure. Curr Opin Support Palliat Care. 2012 Nov 28. [Epub ahead of print] PubMed PMID: 23196381.
4: Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012 Oct;65(10):1041-51. doi: 10.1016/j.jclinepi.2012.05.005. Review. PubMed PMID: 22910536.
5: Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011 May-Jun;9(3):235-43. doi: 10.1370/afm.1249. PubMed PMID: 21555751; PubMed Central PMCID: PMC3090432.
6: Bohlen K, Scoville E, Shippee ND, May CR, Montori VM. Overwhelmed patients: a videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diabetes Care. 2012 Jan;35(1):47-9. doi: 10.2337/dc11-1082. Epub 2011 Nov 18. PubMed PMID: 22100962; PubMed Central PMCID: PMC3241328.