Approaching illness through literature

By Sarah B. Johnson, PhD

The experience of illness is a very personal and specific one. No one can understand what the body is feeling like its owner can, who knows it better than anyone. Resident in my body, I notice the smallest sensations, like the itchy tag on the back of my shirt. But it’s hard to explain this feeling to other people, because it can’t be fully described just by talking about its triggering event. The same shirt probably feels different to someone else. My emotional response to sensation also influences how I experience it. If I’m at the tail end of a bad day, I’ll have a much lower tolerance for scratchy clothes. And when I’m ill, I am the only person who fully understands what my own combination of physical and emotional symptoms feels like. However, expressing all this to my doctor can be complicated. My answer to the question, “How are you feeling?” depends on the day. To help me find the words, I often take inspiration from authors, both old and new, who have taken their turn at the problem. 

Even for a symptom common as fever, the words used to describe it depend on each person’s background and experience. Sylvia Plath’s poem “Fever 103°” depicts illness in terms drawn from sources as diverse as Classical myth, botany, and modern dance. An image of a wheezing Cerberus, the three-headed dog of the underworld, appears alongside a giant red flower, evoking the heat and discomfort of fever. “All by myself I am a huge camellia, glowing and coming and going, flush on flush.” A reference to the sudden death of dancer Isadora Duncan rounds out the speaker’s list of symptoms. Even the mundane details of the patient’s life receive attention. Plath describes chicken soup in the most disgusting way possible, calling it “chicken water,” a term that reflects a sick person’s loss of appetite. 

The effort to derive some benefit from the suffering caused by illness, however, can encourage a person to dwell on their imagined flaws in a damaging way. In this frame of mind, Plath’s speaker discusses their personal faults, and imagines that by enduring the discomfort of fever, they can become “too pure for you or anyone.” In making this claim, the speaker both separates themselves from their loved ones, and implies there was something wrong with them in the first place. This gives pain a positive effect, and gives meaning to a person’s suffering. It can be tempting to imagine suffering as a sort of character-building exercise in this way. It becomes a strategy to cope with things we can’t change, like the weather. Here in Minnesota, it’s often said that wintertime is good for us. 

But scraping the snow off my windshield each morning is easier when I know that spring is coming. What if a future without illness will never arrive? Some diseases are incurable, and become a permanent part of someone’s life. In these cases it’s especially harmful to imagine suffering as a way to fix our shortcomings. Daniel Drubach’s contemporary essay on his experience living with an incurable condition shows a kinder way to live with a permanent state of impaired health. Unlike Plath’s pitiless examination of faults, Drubach’s treatment of himself is gentler. “While I do not hold pity for myself,” he writes, “I do acknowledge a certain degree of compassion.”    

If we choose not to see suffering itself as a means of self-improvement, what other benefit can we gain from it? Drubach suggests that one’s personal experience of disease offers a special version of perception that is not accessible to the healthy self. Opening himself to the full experience of his symptoms, Drubach’s condition enables “the discovery of unique visions and sensations, strange emotions, unusual forms of dreaming, and even a bit of magic.” The visual and auditory sensations produced by Drubach’s illness become familiar parts of his life that provide vivid, if not always pleasant, experiences. Drubach accepts the fact that these sensations will occur, though their content cannot be fully predicted or managed. This mindset positions the body’s demands and their influence on one’s life not as limitations, but as a valuable aspect of being human.

It can be frustrating, however, to have to rearrange our lives around our bodies’ imperatives. When I’m sick, I’m sleepy and can’t concentrate. I find myself re-reading the same page over and over through a fog of body aches. As Virginia Woolf writes, “All day, all night the body intervenes.” Like Drubach, Woolf sees the conditions enforced by illness as a chance to experience the world in a different way. This context transforms the sick person’s enforced absence from their daily routine into a chance to see their life from a new perspective. The familiar proportions of one’s priorities and concerns seem to recede. “The whole landscape of life lies remote and fair, like the shore seen from a ship far out at sea.” Viewing my life from this distance, it can be easier to notice what really matters to me. It can even be beneficial to work with the short attention span of illness, when one’s available moments of concentration are “sudden, fitful, intense.” In this state of mind, I notice those moments of pleasure that often escape my attention when I have the energy to multitask. Even a snowplow methodically clearing the street under my window has its own fascination.

I try to be gentle with myself in illness and accept the difficulties I experience, whether it’s the reduced capacity for activity, or the struggle to communicate my experience to others. Illness is not the time to inventory my faults. It’s okay to step back, to do less. Sometimes, just being is enough.

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.


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


  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.

Unnecessary tests contribute to healthcare burden

By Zackary Berger

There are times when a doctor knows he’s doing the wrong thing and does it anyway. I’ve done it quite often. This happens when I order laboratory tests for no good medical reason. I am ordering them just to help my patient get their operation or procedure.

A 68 year old man comes to see me for cataract surgery. He has some diabetes which is well controlled with oral medications, and some mild hypertension.

The ophthalmologist’s office sends a piece of paper with him. He needs an EKG, a metabolic panel, and anticoagulation studies. None of this, of course, has anything to do with his cataract surgery. Indeed, if you look up the recommendations of the ophthalmologists regarding cataract removal, they say no labs are needed in a comparatively healthy man.

I grumble, grind my teeth, and then…I order the labs. If I am feeling particularly frustrated, I explain to the patient that I am ordering these labs just to make sure the procedure happens as scheduled, but I don’t think they are medically indicated. I am not sure the patient ever understands what I am talking about when I give this little speech.

What is wrong with these labs, anyway? First, of course, it’s the principle of sticking a needle in someone’s arm and taking blood for a test which is not of any use. Second is that labs can lead to harm. A false positive can lead to more testing, labeling, anxiety, and significant morbidity from the vicious cycle of diagnosis-treatment-side effect which we are so often mired in.

If that’s the case, how do we change matters? That’s something I don’t think anyone’s figured out yet. I played a small part, through the National Physician Alliance’s Top 5 lists of most commonly done useless and potentially harmful procedures, in the birth of the Choosing Wisely movement, which has since been publicized by the American College of Physicians and the American Board of Internal Medicine Foundation. But limiting preoperative labs is actually not part of this campaign.

This is such a difficult problem to fix because it involves everyone at once. The specialist requests these tests because that’s the way it’s always been done, perhaps just because they still have 750 copies of the pre-op handout. The receptionist in their office wouldn’t understand if an internist raised a fuss; she might likely think that the doctor was just being a jerk, and then the patient (caught in the middle, as usual) would not get their cataract removed as scheduled. Then everyone would be annoyed at the doctor who got in the way.

As usual, it’s easier to go along and get along, even at the price of unnecessarily disruptive and unneeded procedures. Can we all sit down together and try to wean ourselves of the needless INRs?

How patient-clinician communication can promote minimally disruptive medicine via shared decision-making

by Zackary Berger, MD, PhD

How can we get more clinicians to help the patient receive minimally disruptive medicine? The answer might lie in the improvement of patient-clinician communication. For many conditions, the doctor is encouraged to look into the book – or, more likely, UpToDate – and read out the recommendations of the latest guideline.

But there are two limitations to guidelines. The first, of course, is that all guidelines, whether from the United States Preventive Services Task Force or the International Association of Quackery, are only as good as the methodology and evidence that go into them. The second is that even the best guideline is not a magic recipe for appropriate care for the individual person in question.

If you are discussing screening for prostate cancer via the PSA test, whether you are a patient or provider, you will surely realize that the guidelines of the urologists and internists are now in rare agreement: universal screening is not recommended. What is now recommended is shared decision making, a series of tasks that patients and clinicians do together to communicate about the options and to deliberate to identify the one that fits best with the patient preference and context.

Whether it’s prostate cancer, diabetes, or depression, how can we bridge the gap from guidelines to individually sensitive care? I think there are two steps. The first, as I outline in my book, is to build a relationship between PCP and patient that can handle the intellectual and emotional stresses of decision making with unclear information. This requires mindfulness; emotional readiness; and specificity and clarity of options.

The second step is to contextualize clinical recommendations in a way that only good communication makes possible. Such contextualization is now being addressed by some fascinating new research. We have already known, through the work of communication researchers (chief among them Debra Roter), how to characterize a true dialogue between patient and clinician.

Unfortunately, the evidence is mixed as to the extent to which such dialogue leads to improved outcomes. In their recent work, Saul Weiner and colleagues at the University of Illinois at Chicago, and at Duke University, try to determine how often physicians take the next step after good communication: using an appreciation for the patient’s individual concerns and customizing their recommendation on that basis. It’s not enough to empathize, in other words, about someone’s job loss, poverty, broken family, or inability to navigate our health system: the doctor’s care must respond to those individualities. They find that physicians who manage that customization offer care which is more appropriate to an individual’s given situation (here is a video that demonstrates “red flags” about contextual issues designed to prompt clinician response, which rarely took place).

We know that maximally invasive care is often a shortcut taken by physicians (and patients) overwhelmed by the complexities of possible options, and daunted by the challenge of modifying medicine to a person’s unique needs. Contextualizing care through good communication can give us permission to be minimally invasive when appropriate, hopefully for the benefit of person and system alike.

Zackary Berger, MD, PhD, is an internist and researcher in doctor-patient communication at Johns Hopkins General Internal Medicine in Baltimore. He is particularly interested in the role of the primary care provider in cancer control. His book, Talking To Your Doctor, is out on July 16th, 2013.

The Caregiver Corps – let’s do it!

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 ( 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).

Need for a Minimally Disruptive Medicine toolkit

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?

What is healthcare asking of caregivers? Too much!

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.

Caregivers – overwhelming the silent

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.

Communities and their role in improving care for the five-percenters

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’.

Nathan Shippee, PhD

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.