The concept of Minimally Disruptive Medicine in practice attempts to understand the patient’s balance of their workload of life and their care and the capacity they have to take on that workload. Admittedly, this is a concept many of us as clinicians suspected we understood for our patients, but when we begin to scratch the surface, we truly lack an understanding. We also often feel inhibited to seek understanding of these issues and support true shared decision making when constrained by our settings that are more influenced by government and insurance-based quality metrics. And even when we take the time to understand, we are further constrained by insufficient institutional frameworks to support patients as we seek to help them gain capacity when factors feel “out of our control” (i.e., financial difficulties to afford care or healthy food, deep-seeded loneliness for patients isolated by their conditions, and complex home environments).
When we think of engaging patients in healthcare, when excessive burden exists and a lack of capacity – how will we create healthcare that cares for our patients in a kind and careful way, such that they are engaged in the pursuit of their health, while still having capacity to pursue their life’s hopes and dreams? And why will patients choose to engage with us? Being able to identify the factors surrounding workload and capacity has been an eye-opening experience – encouraging because of the ability to recognize the factors when they arise but at the same time frustrating when you recognize as a provider our limited ability to adequately support the changed needed in certain situations of workload-capacity imbalance. Opportunities exist although they will require both partnerships within communities and significant changes in how we have approached quality based healthcare to date. There have been many times in discussions with patients when we discuss the factors in life contributing to their depression and/or anxiety that we recognize, it’s “life”, if we can’t address them, adapt the treatment plan to accommodate them then we must acknowledge and respect the factors. I have told many patients, “I haven’t found the magic pill to fix life yet but when I do, I promise I will let you know” and until then we must work with our patients to support them and utilize our available resources within the clinic and the community.
Truly having the patient as an active member in their care involves incorporating the patient’s perspective so they can make meaningful choices regarding interactions between their illness and clinical interventions. In some cases, that choice is to forgo treatment – in some cases the motivating factor is the potential of adverse outcomes, a lack of adequate benefit identified by the patient to assume the burden, or general forms of scarcity that mean that the resources the patient must tap into in order to adhere are simply out of reach. For example, patients may choose to forgo colon cancer screening via colonoscopy or the use of a statin medication for cardiac disease risk prevention for any of these reasons. Regardless of the health related decision – how will we train healthcare providers and patients to engage together in this level of care? And how can we apply these principles of minimally disruptive medicine such that we can improve not only our quality of care but patient outcomes with the goal of person-centric, engaged healthcare that aims to carefully and kindly support people with chronic conditions and seeks to prevent the development of chronic disease for our population in the future.
COPD is the third most common cause of death in the USA (1). Fifteen million Americans report that they have been diagnosed with COPD (2), but the actual number is likely to be higher, as more than 50% of adults with low pulmonary function are not aware that they have COPD (3).The national medical costs for COPD were $32.1 billion dollars annually in 2010, and are expected to rise to $49 billion dollars annually by 2020 (4).
But there is not only the impact of COPD on health care services and medical cost; there is a significant burden associated with COPD and COPD treatment that patients have to bear. When COPD patients were asked in a study to define their condition in their own words, 29% percent defined their condition with the sensations of burden, limitation, or disability (5).
Consider the case Mrs. S. who is a 70-year-old cachectic woman who has had 3 hospital admissions for acute exacerbations of COPD in the past year and a total of 12 hospital admissions in the last 5 years. Her COPD is severe based on lung function testing with an FEV1 of 25% predicted and she has chronic severe hypoxaemia with a Pa02< 55 mmHg (<7.3kPa). She gets breathless when she walks more than 30 meters (98 feet). She has been a smoker for 45 years and, unfortunately, she continues to smoke, despite successfully giving up smoking for 6 months- supported by nicotine replacement therapy- a couple of years ago. Her medical specialists and her primary care doctor keep nagging her about her smoking. She is on home oxygen therapy (prescribed to her at the time when she stopped smoking), and recently experienced an anxiety attack when her oxygen concentrator would not work during a power outage. She has a history of congestive cardiac failure, arterial hypertension, rheumatoid arthritis, chronic back pain caused by several vertebral fractures of the thoracic and lumbar spine secondary to long term systemic corticosteroid therapy, hypothyroidism, anxiety and depression.
In the past, she has often not shown up for her specialist appointments because she does not have anybody to drive her to the appointments; she is too unwell to come by public transport; and she cannot afford a taxi. Her pulmonary specialist had referred her to the outpatient pulmonary rehabilitation program at the hospital, but she dropped out after the first session because of transportation problems. She is not taking the tablets she has been prescribed other than pain medication and thyroxin tablets, because she does not feel that they do a lot for her. She finds it difficult to handle the metered dose inhalers with her arthritic fingers and thus often skips the inhalation treatment. She lives on her own; her two daughters live a few hours’ drive away, and she only sees them a few times every year. She does not have any close friends. She feels that most people around her are blaming her for her COPD because she smokes.
It is easy to see that COPD reduces Mrs. S. quality of life significantly, and it apparent that she is overwhelmed by managing the treatment of her disease. What could shared decision making (SDM) and minimally disruptive medicine (MDM) offer to somebody like Mrs. S.? The following scenario could unfold when SDM and MDM are integrated in Mrs. S.’ clinical care:
During the next clinical encounter her pulmonologist uses a decision aid that has been designed to facilitate collaborative deliberation of treatment options in COPD (6). Mrs. S. is invited to choose which outcome goal she would like to discuss first given a choice of ‘improving symptoms of COPD (shortness of breath, cough)’, ‘reducing flare-ups of COPD’, ‘increasing life expectancy’, ‘improving function in everyday life’. She chooses ‘improving function in everyday life’ and learns how important pulmonary rehabilitation is to maintain and improve her function in everyday life. Her pulmonologist shows her a graphic display of the functional improvement that can be achieved with pulmonary rehabilitation in comparison with other measures, such as inhalation therapy. Mrs. S. is surprised to see that pulmonary rehabilitation can do more for her functioning in everyday life than inhalers, and she now wants to give this another try. Because problems with transportation to the clinic have been the major barrier to attending the pulmonary rehabilitation program at the clinic before, the pulmonologist helps her to find a pulmonary rehabilitation program closer to her home that also provides complimentary bus pick up (facilitating social interactions with other COPD patients on the bus- an additional benefit!).
The decision aid further points out that anxiety and depression negatively impact on function in everyday life. Together with her pulmonologist, Mrs. S. decides that she wants to address her anxiety and depression; they agree that he should be treated with an antidepressant. As smoking cessation has also been listed as important for functional improvement, the pulmonologist and patient decide that they will discuss smoking cessation aids during the next consultation.
To address the fact that Mrs. S. feels overwhelmed with all her medications for different diseases, her primary-care doctor and her pulmonologist use an electronic decision support tool that addresses multimorbidity in elderly patients integrating principles of MDM. This decision support tool takes into account Mrs. S.’ individual patient profile and tailors treatment recommendations to her circumstances and preferences. The electronic decision support tool provides information about the types of outcomes achieved with different treatments (e.g. ‘improving quality of life’, ‘increasing life expectancy’) and the impact in reduction of risk across specific scenarios. The tool assist the clinician and Mrs. S. in ranking these treatments based on benefit, harms, and, importantly, burden. After she and her primary-care doctor have discussed the information from the electronic decision tool, they can now understand why some medications are more important for her than others. Perhaps as importantly, they both gain understanding as to the reasons the patient has to value certain aspects of her care.
The electronic decision support tool suggests antidepressant therapy with mirtazapine for her because this medication has also been shown to stimulate appetite and promote weight gain, which would be a desired effect for her.
Regarding inhaler therapy, she decides that she does not want to use inhaled corticosteroids because of the increased risk of pneumonia and her history of previous COPD flare-ups triggered by pneumonia, but she is now motivated to use a combination inhaler with a long-acting bronchodilator and a long-acting muscarinic antagonist because the potential improvement in dyspnoea she can achieve with this treatment. She determines with her pulmonologist that she will stop the inhaler treatment if she does not notice any improvement with her breathing within 3 months. They work with a pharmacist to identify the type of inhaler device needed to account for her problem with handling devices due to arthritis.
Because transport to the clinic poses a significant barrier to attending specialist appointments, her pulmonologist offers her to do a teleconsultation next time.
This futuristic tale has illustrated some of the potential benefits of SDM and MDM in COPD patients. I am particularly focused on helping realize this vision of integrating MDM and SDM into the routine care of patients with COPD.
Submitted by Claudia Dobler, M.D.
South Western Sydney Clinical School, University of New South Wales, Australia
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Centers for Disease Control and Prevention. Chronic obstructive pulmonary disease among adults—United States, 2011. MMWR. 2012;61(46):938-943.
Mannino DM, Gagnon RC, Petty TL, Lydick E. Obstructive lung disease and low lung function in adults in the United States: data from the National Health and Nutrition Examination Survey, 1988-1994. Archives of internal medicine 2000; 160: 1683-1689.
Ford ES, Murphy LB, Khavjou O, Giles WH, Holt JB, Croft JB. Total and State-Specific Medical and Absenteeism Costs of COPD Among Adults Aged >/= 18 Years in the United States for 2010 and Projections Through 2020. Chest 2015; 147: 31-45.
Partridge MR, Dal Negro RW, Olivieri D. Understanding patients with asthma and COPD: insights from a European study. Primary care respiratory journal : journal of the General Practice Airways Group 2011; 20: 315-323, 317 p following 323.
Agoritsas T, Heen AF, Brandt L, Alonso-Coello P, Kristiansen A, Akl EA, Neumann I, Tikkinen KA, Weijden T, Elwyn G, Montori VM, Guyatt GH, Vandvik PO. Decision aids that really promote shared decision making: the pace quickens. BMJ (Clinical research ed) 2015: 350: g7624.
This is open for debate. What are the patient workload and capacity implications of having access to the medical records? Is it net benefit (as in more capacity due to better understanding and easier caregiving, lower cost/effort of accessing clarifying and helpful information) or net harm (as in docs using the record to communicate with patients rather than directly; records written in impenetrable jargon; access is through portals and other devices that patients negotiate via difficult and cumbersome protocols?). What is your experience?
Can adverse economic circumstances have a negative impact in the glycemic control of patients with diabetes? Mounting evidence suggests that this may be the case (1, 2). A recently published cross-sectional study identified food insecurity and cost-related medication underuse as unmet basic needs that were independently associated with poor diabetes control (1). Although associations between diabetes-related complications (e.g., lower extremity amputations or acute cardiovascular events) and specific material need insecurities were not investigated in this study, the data presented by Berkowitz and collaborators suggests that patients with diabetes struggling with financial burdens could be particularly vulnerable to this disease and may need a higher use of health care resources (1). Clearly, there are no simple solutions for these social problems that require the implementation of population-based strategies that go well beyond the scope and limits of public health. So, what can we do as clinicians? Certainly activism to end poverty, build prosperity, and advocate for universal health coverage would be welcomed. Also, we can recognize that the principles of minimally disruptive medicine offer opportunities that are particularly valuable in populations with limited financial capacity. Excessively demanding treatment plans in patients with diabetes and other associated chronic comorbidities – that include the use of multiple costly medications and unnecessarily investigations – can lead to the disruption of patients’ wellbeing, poor treatment adherence, and eventually the development of negative outcomes (3). In patients struggling with material need insecurities we should expect some limitations in their capacity, and therefore, it is in this group that health care should be the least disruptive as possible.
Oscar L. Morey-Vargas MD
Endocrinology, Diabetes, and Nutrition Fellow
Mayo Clinic, Rochester
Berkowitz SA, Meigs JB, DeWalt D, Seligman HK, Barnard LS, Bright OM, Schow M, Atlas SJ, Wexler DJ. Material Need Insecurities, Control of Diabetes Mellitus, and Use of Health Care Resources: Results of the Measuring Economic Insecurity in Diabetes JAMA Intern Med. 2014 Dec 29. doi: 10.1001/jamainternmed.2014.6888.
Ngo-Metzger Q, Sorkin DH, Billimek J, Greenfield S, Kaplan SH. The effects of financial pressures on adherence and glucose control among racial/ethnically diverse patients with diabetes. J Gen Intern Med. 2012;27(4):432-437.
May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009 Aug 11;339:b2803. doi: 10.1136/bmj.b2803.
Research now indicates 50% of middle–aged people live with one chronic disease. Translation: half of middle-aged people are not healthy.(You don’t need a reference there. Just walk out into the world and look around.)
This new normal creates a challenge for caregivers. How will we care for the onslaught of chronic disease?
Surely not with the current model of care. What happens now is that doctors treat diseases–and even “pre-diseases.” We once had diabetes and hypertension and heart failure. We now have pre-diabetes, pre-hypertension and Stage A (no symptoms and no findings) heart failure.
Guidelines statements promote disease-specific numeric measures, such as blood pressure, glucose and cholesterol levels. Patients not at goal get more medication. Then guidelines spawn quality measures, which intensifies already burdensome care. Hit doctors with sticks, feed them carrots, the result is the same: more pills and procedures.
Here is the problem: People are not diseases. Guidelines are context blind. As the burden of healthcare overcomes the capacity (physical, mental, emotional and financial) of the patient, she makes choices of what to do. Said another way: life gets in the way of healthcare. No one wants to spend their life being a patient.
Dr. Victor Montori (@vmontori) is an endocrinologist at Mayo Clinic. His idea for making healthcare more effective is to shun disease-specific context-blind surrogates. Montori and his team have asked us to consider a minimally disruptive approach to healthcare. Quality care in their model happens when patients improve their ability to function–or enjoy life.
Their two new words in healthcare are work and capacity. Minimally disruptive care seeks to decrease the work of care while increasing the capacity of the patient to do the work.
This is not health policy gibberish. Think about it. We are losing the fight against chronic disease. When something is not working, you change the strategy.
Montori’s suggestions are simple: 1) Start by using the right language.Assess the burden of care and think about the patient’s capacity to do all that we prescribe. 2) Guideline writers must add context, otherwise guidelines will become irrelevant. 3) Use shared-decision making. If you have to treat 140 patients with a statin medication to prevent one heart attack (meaning 139 patients take the drug without benefit), it makes sense to incorporate the patient’s goals. 4.) Think about deprescribing,not just in the elderly, but in relation to decreasing the work of healthcare.
Here is a 45-minute lecture Montori gave to a group of primary care doctors. About half-way through the video, he describes a patient named John. John is real life. And once you hear John’s story, it is impossible to think we are on the right path.
The North America Primary Care Research Group hosts the foremost international annual conference on primary care research. In 2014, it took place in New York City on November 21-25. It started with a plenary by Victor Montori on Minimally Disruptive Medicine. The audio for that plenary has now been released and can be enjoyed on the Soundcloud website or App. The audience resonated with the message of Minimally Disruptive Medicine. A blog Victor penned discussed the upcoming talk as focused on a careful and kind approach to healthcare. The audience gave these ideas a standing ovation, but not all found the solution complete: Martin Roland for one thinks more primary care research to address the enormous needs of patients with multiple chronic conditions is needed. And that is what we are trying to do.
Minimally disruptive medicine seeks to respect patients above all else, but what that means in practice is complex. Indeed, in its efforts to reduce the healthcare footprint on patients’ lives, MDM tries not to overburden patients with excessive healthcare tasks and responsibilities. At the same time, MDM aims to promote patients’ capacity to make decisions, take ownership of their health, and to do the things that bring meaning to their lives. Health care is serving patients well when it seeks to truly empower, engage, and activate patients to do the things that bring meaning to their lives. This terminology can be hijacked, however, to justify a transfer of work and responsibility to patients that primarily serves only the goals of health care itself. Such a maneuver is a disrespectful imposition on patients.
Michael Millenson is the president of Health Quality Advisors LLC, a leading thinker on patient-centeredness and quality in health care, and a valued member of the Minimally Disruptive Medicine Workgroup. His recent holiday-themed blogpost, Engaging Patients in Safety: Naughty or Nice?, is a thoughtful illustration of the ways in which efforts taken in the name of patient engagement can sometimes miss the mark.
The process of engaging patients in making care safer should be seen through a Santa Claus lens. It can be naughty or nice, depending not on good intentions but on the specifics of the intervention.
True engagement is collaboration; the rest deserves a lump of coal in the stocking.
Seeking True Empowerment
The key question is whether patients are being truly empowered or whether providers are passing the buck, placing on patients’ shoulders responsibilities that rightfully should reside elsewhere. It’s like those old Westerns where the sheriff hands rifles to a bunch of ranchers and tells them to form up a posse and ride with him after the bad guy. While it’s nice to be a valued part of the justice system, there’s a reason the local citizenry finally coughed up enough cash to pay for a real police force.
Frances Mair and I have an Editorial in this week’s British Medical Journal that sets out some of the key problems around Burden of Treatment and multi-morbidity. That the BMJ should commission this editorial from us shows that the idea of Burden of Treatment is getting traction across the healthcare economy. And why shouldn’t it? The bug issue here is patient and carer workload – something that we know much less about than we should. The editorial comes hot on the heels of an important meeting sponsored jointly by the National Institute of Health Research and the Royal College of General Practitioners that sought to develop a strong research agenda on multi-morbidity. The key message that I took away from that meeting was that there was a real risk of turning multi-morbidity into a kind of new disease in itself – in the way that we often now hear chronic illness and long-term conditions spoken about in a quite undifferentiated way. In fact, the big problems here are at a system level, and they’re the problems that Frances and I discuss in our editorial. I was a plenary speaker at the RCGP NIHR Multimorbidity meeting and I’ve embedded my powerpoint presentation below.
From: Anne Rogers, Ivo Vassilev, and Anne Kenney; University of Southhampton
The aspiration of minimally disruptive medicine advocates is to progress the proliferation of care and management that fit with patients’ goals and contexts that people can make a ‘normal’ part of their life. The power and capacity of personal networks in this equation potentially takes this aspiration beyond the confines of traditional medical and health care settings. A trial and a recently published systematic review of likely mechanisms and capacities of networks provides some support for continuing this line of thinking.
The BRIGHT trial just published http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0109135 was predicated on the development of a programme of work incorporating the notion that social networks are implicated in providing support outside formal health services through the mobilization of resources and interaction with aspects of everyday life (for example, home, family, work, leisure and friends). The intervention centred on providing patient information incorporating lay-experiential knowledge alongside clinical information and broadening support addressing social and and personal needs through linking patients’ needs and preferences to local community resources. This trial produced positive effects in so far as the intervention was associated with modest but significant improvements in health related quality of life and better maintenance of blood pressure control for those individuals in the intervention group. However as with many trials, this takes us only so far.
Key questions remain about identifying the mechanisms of networks which are relevant here. We have considered this in a systematic meta-synthesis exploring network mechanisms as located within a broader social context shaping practices, behaviours, and the multiplicity of functions and roles that network members fulfil. http://www.biomedcentral.com/1471-2458/14/719. It seems that 1) sharing knowledge and experiences in a personal community; 2) accessing and mediation of resources; 3) self-management support requires awareness of and ability to deal with network relationships. These elements translate into line of argument synthesis in which three network mechanisms were identified. network navigation (identifying and connecting with relevant existing resources in a network), negotiation within networks (re-shaping relationships, roles, expectations, means of engagement and communication between network members), and collective efficacy (developing a shared perception and capacity to successfully perform behaviour through shared effort, beliefs, influence, perseverance, and objectives). These network mechanisms bring to the fore the close interdependence between social and psychological processes in chronic illness management (CIM), and the intertwining of practical and moral dilemmas in identifying, offering, accepting, and rejecting support. In future then minimally disruptive medicine might turn its attention to focus a bit more on: raising awareness about the structure and organisation of personal communities; building individual and network capacity for navigating and negotiating relationships in CIM environments and maximising the possibilities for social engagement as a way of increasing the effectiveness of individual and network efforts for CIM.
See our continuing work on networks in the NIHR CLAHRC Wessex, EU-GENIE (European Generating Engagement in Networks Involvement), and EU-WISE
Is it time to dump the individualism of self- management support and replaces with a focus on social network involvement which expands with need and saves costs?
By Anne Rogers (University of Southampton)
Minimally Disruptive Medicine is described here in earlier entries to this blog as a service-driven approach to care, co-created with patients (as is the best experience at any service), that makes sense for patients and meets their goals with evidence-based approaches, in a manner consistent with their needs and preferences.
Self-care is often seen as part of that aspiration for co-creation with service providers and has been promoted extensively as part of models encouraging better chronic illness management. The predominant vision for building and enacting self- management capacity has tended to be predicated on the fashioning of peoples’ engagement with this agenda through appeals to normative lifestyles and desirable behaviours.
The literature is replete with references to the focus of self management encouraging the “resourceful patient” as one who should accept responsibility. The whole agenda around self management has been accompanied by a proliferation of terms representing an idealized self-managing individual (“empowered,” “autonomous.” “future,” “expert,” “activated,” “wireless,” “co-producer,” or “flat pack patient”) in the pursuit of confident knowledgable patients practicing self management. In line with this there is an almost exclusive focus on individualistic outcomes such as self-efficacy and patient activation.
This perspective has not only generated a set of interventions which have produced an equivocal evidence base for efficacy, but has masked the power of connections and being linked into networks which provide access to the support that people value and engage with as part of everyday life.
Our recent work in this area at the Universities of Southampton and Manchester indicates that current ways and assumptions of self-management support need to change.
Social network members and dynamics play an important role in the division of labour and the meeting of needs for those living with a long-term condition. We took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management.
Our key findings:
Partners and close family make the highest contributions to supporting self-managment but there is also evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner indicating a degree of substitutability between differently constituted networks and that the level and type of input by different members of a network may change according to circumstances.
Pets in networks have unique qualities and are not simply substitutes for human relationships in long-term condition management. Pets contribute mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). Pets mediate relationships for people living with a long-term condition through very weak ties with others in domestic and community settings.
The amount of work undertaken by ‘weak ties’ is similar to but less than that of stronger ties. Weaker ties appear more durable and less liable to loss over time than stronger ties. ‘Weak ties’ enable the moral positioning of the self-managing ‘self’ and seem to act on the basis of a strong sense of reciprocity. Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered.
Our most recent analysisexplored how people’s social relationships alongside the availability of social capital operate in their local community . Over a one-year period, we found that social involvement with a broad variety of people and groups supports peoples’ own management of their condition and contributes to physical and mental well-being. Evidence of a positive care law was indicated by the fact that Personal networks input was found to expand in accordance with health needs so as to provide assistance in coping. Network support was found to substitute to an extent for formal care and provide substantial savings in traditional service utilisation costs.
We need to recognise the importance of social networks and social involvement and find ways to incorporate such knowledge into future ways of managing long term conditions. Support for self-management which achieves desirable outcomes should be seen less as an individualised set of actions and behaviour and more as a social network phenomenon. Interventions and strategies for chronic illness management require a greater focus on harnessing and sustaining the capacity of networks and the importance of social involvement with community groups and resources for producing a more desirable and cost-effective way of supporting long-term illness management.
Learn more about the work of Dr. Rogers’ and her team here: