Balancing competing priorities: Managing illness vs. living life

By Catherine Maguire

The high treatment burden in chronic respiratory illness is very real. As a 28 year old living with Cystic Fibrosis (CF), when healthy I am usually on 16+ medications and engage in over 2 hours of treatments daily. I currently take up to 47 tablets daily, depending on my food intake. I usually have 1-2 hospital admissions per year lasting 10-14 days each, for routine intravenous antibiotics and intense chest physiotherapy to clear out my lungs. Of course, these figures skyrocket when I have an exacerbation.

This treatment schedule isn’t always easy to manage when integrated into the context of trying to live a “normal” life; including professional employment, post graduate studies, social affairs, playing mum to two beloved dogs, maintaining a house and being a fabulous wife.  I’d like to provide some further insights into what the treatment burden involves for individuals like myself.

For me, treatment burden from Cystic Fibrosis falls into six main categories:

  1. Participating in physiotherapy for airway clearance every day takes at least an hour. Add in my usual nebuliser regime and that figure doubles. I don’t always have time for dirty dishes, or to put that extra 30 minutes into proof-reading my essay – not because of my CF per se, but because of the treatments to keep my CF at bay.

 

  1. BOTHER: Organizing my own medicines into pill boxes each week; mixing powder antibiotics with saline/water for injection prior to nebulization; sterilizing equipment; setting up and dismantling my physiotherapy table each day. While all of these aspects to treatment may seem “petty” in the grand scheme of things, they not only take further time out of my day, but they are just a nuisance, a bother. And anything which is perceived to be a bother requires additional incentive for compliance.

 

  1. PHYSICAL EXHAUSTION: Participating in daily forced airway clearance (and therefore controlled breathing and coughing for over an hour) is actually very exhausting! I think this treatment is actually more straining and demanding on my energy than the “actual” symptoms of the disease.

 

  1. ACCESS: There are numerous “systems” issues with healthcare in Australia. Now don’t get me wrong, we have some of the best health care in the world and I am forever grateful for the level of care I am provided with under Medicare. This said, there seems to be some mini hurdles which could easily be rectified, such as having to navigate dual pharmacy systems (local community pharmacy and hospital pharmacy for specialised medications). Additionally, access to the CF clinic staff closes by 5pm which can be another obstacle for working professionals. Lastly, I’ve also found it difficult to access regular, affordable, reliable physio-in-the-home to assist with daily airway clearance.

 

  1. COST: Prescription medications, even at discounted rates are expensive. This coupled with the high volume of non-prescription medications such as vitamins and supplements due to pancreatic insufficiency, create a huge cost. Other costs include physio-in-the-home; equipment costs; unpaid leave from work for appointments and hospital admissions; costs of a high calorie diet; hospital parking; paying for hospital cafeteria food and take-away (because food served to actual patients is often inedible and does not always meet CF dietary requirements); ridiculously expensive travel insurance… the list goes on.

 

  1. PSYCHO-SOCIAL: The burden from this intense treatment regime creates some real barriers to social affairs, employment and career advancement, housework, tertiary studies and being a fabulous wife. But psycho-social impacts extend beyond the consumer and onto loved ones and partners. When these people act as carers (such as to help with additional physiotherapy) the relationship dynamics change and it can create a myriad of psychological consequences. In regards to psycho-social support – this is currently minimal. If I visit a psychologist in my community the likelihood is I would spend the first few sessions educating them about the psychology of chronic illness and what CF is / how this impacts my life. I would also only be entitled to limited sessions and need to pay a gap fee depending on their rates. People with complex health issues require specialist psycho-social staff with expertise in chronic illness and treatment burden. How is it I am living with a chronic terminal illness yet the clinic currently has no CF counsellors, psychologists or social workers funded by the hospital?

Having said this, imagine if some of the aforementioned obstacles could be addressed. Now this may be a very ambitious wish list, but here are some solutions which would make the treatment burden from CF much easier:

  • Providing a life-long health care card (regardless of income) to assist with the costs of medications.
  • Streamlined pharmacy systems whereby you collect all medications from one pharmacy or even better – home delivery! This would (a) reduce the extensive pharmacy waiting times at the hospital (b) reduce logistically having to negotiate drugs at separate pharmacies (c) having to remember which scripts to get from which doctors and (d) at which pharmacy.
  • Discounted parking rates at the hospital for frequent-flyers.
  • Affordable (or ideally free) reliable physiotherapy in the home.
  • A push for pharmaceutical companies to revolutionise how our medications are delivered into the lungs by developing more puffers/quick inhaled medications which are just as effective as nebulised medications. Nebulisers take time, puffers don’t. Likewise, for drugs that must be nebulised, have them in ready-to-go nebules so we don’t need to mix them with saline/water for injection prior to use.  Perhaps nebuliser pieces could also be dishwasher safe to eliminate the sterilisation process.
  • Routine access to psycho-social services, i.e. a psychologist/social worker/counsellor who specialises in chronic illness to be available for both outpatients and inpatients.

Many chronic illnesses including CF require a complex daily regime in order to prevent the progression of the illness. On a daily basis I am forced to make a cost-benefit analysis with my treatment schedule: it may be costing me 2-3 hours of treatments today, however it will hopefully be a worthwhile investment; increasingly my quantity and overall quality of live into the years to come. My decision, while logical, is not always easy to make when considering the competing priorities in my life at any given time. Imagine how many consumers engage in this cost-benefit analysis and choose non-compliance? As a medical community I urge us all to look beyond the actual diagnosis and symptoms of the disease, but to also consider the very real impacts the treatment schedule has on the everyday lives of consumers.

My Minimally Disruptive Medicine (MDM) Experience

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.

 

Submitted by Summer Allen, M.D.

Shared decision making and minimally disruptive medicine for COPD patients

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.

Dobler

Submitted by Claudia Dobler, M.D.
South Western Sydney Clinical School, University of New South Wales, Australia

 References

  1. Centers for Disease Control and Prevention. National Center for Health Statistics. National Vital Statistics Report. Deaths: Final Data for 2010. May 2013; 61(04).
  2. Centers for Disease Control and Prevention. Chronic obstructive pulmonary disease among adults—United States, 2011. MMWR. 2012;61(46):938-943.
  3. 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.
  4. 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.
  5. 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.
  6. 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.

A Pragmatically Comprehensive Model for Delivering Care to Patients with Multiple Chronic Conditions

Patients with multiple chronic conditions must deal with complex circumstances and significant burdens of treatment and disease. Stakeholders at all levels are invested in finding innovative ways to effectively care for these patients. Here, Dr. Aaron Leppin and colleagues show how Minimally Disruptive Medicine can be operationalized to optimize care for these complex patients. This paper introduces the first conceptualization of a specific care delivery model built upon the theoretical precepts of MDM. (Leppin MDM Healthcare Paper)

Open access to medical records and reforms — Let’s hear from you!

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?

BMJ article

Maria Luisa’s Catch-22 and Minimally Disruptive Medicine (Photo essay)

In Joseph Heller’s classic novel Catch-22, the protagonist John Yossarian is a Captain in the Air Force during World War II. Yossarian does not want to fly any more missions as flying could be very dangerous. He reasons that any sane person would not want to fly, however, the only people who do not have to fly are those deemed insane and thus unfit to fly, the catch, the Catch-22, is that those who are insane and want to fly and thus can, but don’t have to, and those are sane don’t want to, but have to.1

Anyway, this story isn’t about an Air Force captain, this is the story of Maria Luisa, a woman stuck in the Catch-22 of health and illness; to live the life she wants to live she must manage her health, but managing her health prevents her from living the life she wants to live.

Maria Luisa, 87, a native of Peru, lives in the last frontier, Alaska. She has 3 children, 13 grandchildren and 12 great grandchildren. She has hypertension and, for the last 5 years, she has been on hemodialysis. Maria Luisa lives with her son, who is her caregiver and also a patient with chronic disease. Three times a week, she wakes up at 5:30 am, fixes some breakfast, and bundles up against the cold, which routinely reaches -10°C. Her son then drives her to the dialysis center at 6 a.m.

When she is not hooked up to the dialysis machine, she enjoys shopping (or window shopping), which also gives her a chance to be active. However, because of her health conditions she often gets short of breath which makes walking (and shopping) more difficult. To try and manage her medical conditions Maria Luisa takes 10 to 13 pills daily, to help organize her medications, Maria Luisa and her son, every Sunday, uses color-coded bottles to arrange her medications according to the day of the week and the time of day of each dose. In addition to this Maria Luisa tries to adhere to a diet that is low in salt, potassium, phosphorus, protein, and water. As a result of this she often copes with this limitation with dietary indiscretions that contribute to worsening of her health and to emergency department visits.

Organizing her medications, attending dialysis, scheduling doctors’ appointments, and adhering to her diet, while helpful to manage her chronic health conditions gives her lots of work; work that is disruptive to the life that Maria Luisa is trying to live in spite of her health conditions – a Catch-22.

Despite these difficulties Maria Luisa has resources she can mobilize to help her manage her health and the work and disruption illness causes. These resources include a loving, supportive family, a resilient personality, and financial resources. These resources are often helpful but, Maria Luisa faces a barrier that many patients face, as English is not her first language. This makes it more difficult for her to self-manage, makes her more isolated in a community with few Spanish speakers, and makes her more dependent on her caregiver, her son.  This barrier to communication has contributed to her difficulties managing her health; specifically she has had trouble communicating her difficulty following her diet.

How can we help Maria Luisa live the life she wants to live, maximizing health and happiness, while minimizing the work and disruption caused by illness? One approach that can help Maria Luisa is Minimally Disruptive Medicine.

abuela

Minimally Disruptive Medicine (MDM) is an approach to medicine that seeks to promote patient goals while right-sizing the work of being a patient to each patient context. MDM aims to manage the workload that the pursuit of health imposes upon people by examining that workload in the context of the patient’s life, their goals, and the capacity they have to implement that workload and thus, minimize the disruption medicine causes in a person’s life allowing them to live the life they want to live. 2

Using a MDM approach what can we do for Maria Luisa? How can we create a healthcare plan that fits for her? These are the questions I asked myself after another dietary indiscretion landed her once again hospitalized in the ICU.

Working with her family and healthcare team in Alaska we designed a plan that we thought would better fit Maria Luisa desires and available capacities.

We redesigned the way Maria Luisa organizes her medications, getting rid of the individual pill bottles and replacing them with two large pillboxes; one for her morning medications and one for her evening medications. This change made it easier and safer for Maria Luisa and her caregiver to organize her medications. In addition, Maria Luisa felt that this new system was easier to use and one that she could implement on her own, thus increasing her self-efficacy and leaving her happy and with a renewed feeling of independence.

In addition to reorganizing her medications, we also consulted with a Peruvian dietician to create a diet that not only was good for Maria Luisa, but also allowed her to enjoy eating once more, thus, reducing the chance of a deterioration in her health due to nonadherence to her prescribed diet. To further facilitate this change we mobilized some of Maria Luisa’s financial capacity and hired someone to help her prepare the food on her new diet.

Finally, in order to make her dialysis better fit into her life we arranged to have her dialysis completed at night rather than during the day. This not only allows Maria Luisa to do things she enjoys during the day, but, now she goes to dialysis at 5pm, gets out at 8pm and feels ready to go to bed. With this change Maria Luisa says she feels more rested and finds that her afternoons are more useful (she has started to knit again!) and her great granddaughters are more likely to visit because she is well rested and not exhausted from dialysis. An additional unexpected benefit is that some of the nurses who assist with dialysis in the evening also speak a bit of Spanish, thus giving Maria Luisa someone to talk to in her native language.

We might not have addressed all of Maria Luisa’s workload issues (ej. scheduling/attending appointments, physical activity) but I am sure that these simple changes have and will continue to make a big impact on her life.

I write about my experience with the hope that someday some young medical graduates (like me) will start thinking about “Maria Luisas” and ask themselves the same question I now cannot stop asking. How can we work with patients to co-create goals for care that respect each patients’ context, history, capacity and goals? Clinicians have met patients with similar stories, in similar catch-22s of illness, healthcare, and life. But this is not, for me, like any other story. This is the story of my abuela, who once again, has helped me find, in minimally disruptive medicine, a good answer.

Ana Castaneda-Guarderas MD @amcguarderas
Research Trainee, KER Unit
Unidad de Conocimiento y Evidencia (CONEVID)

Acknowledgments:

Dr. Castaneda would like to thank Michael R. Gionfriddo Pharm.D for his editorial assistance.

References

1. Heller, Joseph. Catch-22.  Simon & Schuster, 1961. Print.
2. Leppin, A. Minimally Disruptive Medicine, at your service. URL: http://minimallydisruptivemedicine.org/2013/08/23/minimally-disruptive-medicine-at-your-service/. August 2013

Can adverse economic circumstances have a negative impact in the glycemic control of patients with diabetes?

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

References

  1. 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.
  2. 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.
  3. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009 Aug 11;339:b2803. doi: 10.1136/bmj.b2803.

REPOST: Is healthcare careful? Is it kind? by Dr. John Mandrola

Is healthcare careful? Is it kind?

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.

NAPCRG Plenary on Minimally Disruptive Medicine – audio is out!

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.

Comment on: Engaging Patients in Safety: Naughty or Nice? by Michael Millenson

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.

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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.

TO READ THE REST OF THE BLOG POST, GO TO: http://www.engagingpatients.org/patient-and-family-engagement-2/engaging-patients-safety-naughty-nice/