OP-ED

Why #CultureofHealth Doesn’t Work For Me

Leslie Kernisan new headshotEarlier this month, I attended the Fall Annual Health 2.0 conference. There was, as usual, much talk of health, total health, and of extending healthy years.

And this year, there was a special emphasis on promoting a “Culture of Health,” a meme that has become a centerpiece of the Robert Wood Johnson Foundation’s work.

So much so, that when I approached a conference speaker, to briefly comment on my interest in helping beleaguered family caregivers with their carees’ health and healthcare issues, I was advised to work on promoting a culture of health.

Hm. Funny, but as a generalist and geriatrician who focuses on the primary care of older adults with multiple medical problems, I’d been thinking more along the lines of:

  1.  Promoting the wellbeing of older adults and their caregivers.
  2. Optimizing the health – and healthcare — of my aging patients.

In other words, I’d been thinking of a “Culture of Care.”

As in: “I care about how you are doing, and I will provide care to help you with your health.”

Since all my patients have multiple medical conditions, that care means finding ways to help them with their many health concerns. These include diseases, such as diabetes, COPD, heart failure, and Alzheimer’s, as well as “problems,” such as pain, falls, depressed mood, and worrying about whether some recent snafus are a sign of dementia.

It even includes issues like tense relations with anxious children who think Mom should move to assisted living; a common “relationship issue” that inevitably tracks back to the present and future state of Mom’s underlying health problems.

My work, as a doctor, is to collaborate with my patients in order to minimize symptoms, maximize function, improve wellbeing, and prevent health complications. All of which, if I do it well, generally ends up helping their family caregivers.

Is promoting a #CultureofHealth the same as promoting a #CultureofCare? As a front-line clinician, they feel very different to me.

Namely, one strikes me as about working way upstream to prevent health problems before they happen. (“We shouldn’t need a sick care system!”)

And the other is about responding to people who are suffering, and need our help to feel better. No, this is not the hallowed work of preventing chronic diseases from emerging. But it is preventing – or at least delaying — further deteriorations in health and function. It is helping people make the best out of the situation they are now in.

If you are working with people who are already downstream, and are coping with the burdens of chronic illness, should your priority be #CultureofHealth? Or #CultureofCare?

Consider, for instance, the family described in Knocking on Heaven’s Door.  If Katy Butler’s parents, struggling with cognitive impairment and progressive decline in the aftermath of a stroke – and this after a lifetime of “healthy living” – ask their primary care doctor for help, is he more likely to offer the right assistance by thinking “Promote Culture of Health”? Or “Promote Culture of Care”?

After all, one way leaders can test a guiding principle is to ask themselves: as people in my organization face their work challenges, will this help them know how to do it right, or better?

I don’t think #CultureofHealth helps me do my work better. Instead, it leaves me wondering how on earth I’m going to get help doing my work.

This is not to say, mind you, that I don’t have great respect and appreciation for the work and ideas of the Robert Wood Johnson Foundation. If you’re someone like me, who went to medical school planning to work on improving primary care, you can’t not love RWJF. (Nor can you avoid hoping that they’ll someday find you worthy of funding.)

Furthermore, as someone with a MPH degree, an interest in systems, a background in quality improvement, a focus on person-centered care, and unqualified admiration for Alex Drane’s work highlighting the Unmentionables that affect people’s lives, I absolutely believe in what RWJF is championing.

That is to say: I believe that we as a society must address the social determinants of health, help people feel well, and work within but especially outside of doctors’ offices, to prevent chronic health problems before they develop.

But I worry that #CultureofHealth isn’t quite right, as the guiding principle for certain aspects of health care.

So I’d like to respectfully propose we look for some complements to #CultureofHealth. It’s a great concept, but we likely need more if we are going to find a way to offer all our citizens – including the aged and the chronically ill – the care they need and deserve.

(Are you a data junkie? For data on the scope of multimorbidity and associated utilization in the healthcare system, see the figures in the Medicare Chronic Conditions Chartbook. For data on how many older adults have difficulty walking, doing errands, etc, see Figure 2-14 of the Census Bureau report on seniors.)

ISO a meme for the primary care of the medically complex

We need a meme that speaks to better primary care for people with chronic health problems, and that helps us – as healthcare providers – do our job better. Specifically, we need a phrase that reminds us to be better at:

  • Seeing our patients for who they are, and not focusing excessively on their diseases;
  • Recognizing the many unmentionables –  financial problems, caregiving burdens, relationship stressors, depression, substance use – that often underlie people’s difficulty in addressing other health issues;
  • Respecting – and facilitating — the involvement of our patients’ families, peer communities, and other sources of support and influence;
  • Helping our patients try behavioral interventions (such as exercise, stress reduction, social activities, diet changes, therapy, and even “activities that create a sense of purpose”) for the many complaints for which these help, instead of quickly defaulting to pills and procedures;
  • Discussing advance care planning, and addressing people’s fear and anxieties about death and declines in health;
  • Delivering the right care, at the right time, in order to help relieve suffering and optimize management of chronic diseases, so as to help our patients move towards whatever goal is a good fit for their preferences, values, and health situation.

For those of caring for Medicare patients, we need a meme like this because aging adults – and their families — are coming to us for help, but in most practice situations, we’re having a lot of trouble providing the right help. It’s even, I’m sorry to say, common for us to inadvertently make things worse.

#Cultureofhealth is great for the population at large, and will likely have a profound impact on the health and wellbeing of older Americans in the future.

But let’s also promote some complementary memes, to help inspire the work we’ll be doing helping those with aging, and with multiple chronic health problems. Let’s not just bash the “sick care” system; let’s inspire ourselves to take better care of those who are sick and suffering.

So. I want to end this post by asking for your ideas. What meme resonates with you, when it comes to the clinician’s – or even the innovator’s — work of helping medically complex patients, and their caregivers? What phrases might serve as a touchstone?

By the way, #Cultureofcare was recently used to rally support for family caregivers. I do like it as a guiding principle for our work as doctors, but would love to know what others – clinicians, patients, family caregivers – think.

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32 replies »

  1. Relevant to this topic, I’m reading Atul Gawande’s book, Being Mortal, and better understanding the need for Culture of Care. It’s an illuminating read.

  2. You go, Granpappy!

    Those people brought to the US for treatment of their Ebola do not need “management of their well-being.” They needed DOCTORS.

    The 9 y/o kid who catches a bullet in the chest during a drug gang shootout doesn’t need a surgeon who worships at the altar of “cultureofcare.” She needs a thoracostomy.

    I am all in agreement that there are times when doctors should do LESS, and not more. This is part of being a doctor, and what seems to be taught less and less in both medical (and apparently NP school).

    I also applaud Dr. Kernisan for her efforts to engage families and “healthcare” workers in a new approach to address chronic conditions, and promoting wellness. But she and I do pretty different jobs. Yeah, I tell my elderly patients to have good lighting, avoid throw rugs, extension cords, etc., but usually that’s AFTER I am seeing them in the ER with that broken hip or wrist.

    What we need is not a new “meme,” in my view. What we need is more good primary care physicians (like Dr. Kernisan), and simultaneously patients who will actually take their ADVICE (as opposed to internet bolognatherapy, new-age crystals, or whatever . . .)

    After all, it wouldn’t have mattered how good Marcus Welby, MD, was- if all his patients simply said, “yeah, thanks, doc, but I’m going to just keep drinking and smoking and taking my dilaudid for my chronic back pain, and going to the ER every time I need a refill on my narcotics and xanax.”

  3. Leslie, I salute you for promoting a Culture of Care. As previous posts have noted, even after we are immersed in a Culture of Health, we will all face the end of our life, at which point we will be thankful if advocates like you have succeeded in establishing a Culture of Care.

    We need to reconnect the concept of good end of life care part to our understanding of a healthy life. A culture of health helps us all live better lives, and a culture of care would help us all have a better end of life.

    One of the reasons that there is less traction for Care than for Health has to be that there is less profit in Care. it was disappointing to read that professional caregivers’ right to minimum wage or overtime will continue to at least a year. In my experience, the key to a good end of life is good caregiving at home. Sadly, there is no coverage for this service in Medicare. The fact that nursing homes and hospice visits are covered is linked to the large for-profit companies who are in this space. Perhaps the tsunami of baby boomers approaching end of life will provide the impetus to build a system that lets people stay at home at the end of their lives. Maybe we should be considering a WPA-type of program that puts our unemployed fellow citizens to work to make this happen. In addition to care givers, Care Crews would include light-construction teams (ramps & railings), transport teams, administrative support, etc.

    Just dreaming, but you have to start somewhere!

  4. Texas Health Resources (parent of Presby) COO one month ago on their efforts to:

    “shift our focus from sick care to actually managing well-being”

    Sorry, when I’m a patient, I prefer a hospital that specializes in the sick and suffering.

  5. Another thought which occurred to me is that while health is a good goal, the fact is that we will all lose it. It is inevitable. Its lose is one of the three universal visitors: aging, sickness and death.

    In the face of this inevitability, care is the one thing we can do for ourselves and each other, even and especially, when we can no longer sustain health.

    This thought makes “culture of care” even more compelling, I believe.

  6. Your insight Bart speaks to the nature of many of Leslie’s points. The meme I think might provide the basis for encouraging health care professionals to understand what patients need is to consider: “Collaborative Team” because the words suggest working actively together with the patient centred to problem-solve complex issues.

    The concept of team work is bandied about as if “it’s in place, BUT “inactions speak louder than words.”

  7. Dr. Painter, thanks for this comment.

    What do you think of “Culture of Caring & Better Health?”

    I do think our overall goals are aligned, although I’m likely much more concerned for the Medicare population than many are. But this is to a large extent a marketing and communication question.

    What you and I think, as people who write/think about healthcare, matters less than what the audience of the message thinks when they hear “We’re promoting a Culture of Health”.

    I believe it’s a wonderful message for many, but I wonder what people think if
    – they have a chronic illness
    – they are declining and in their last years of life
    – they are front-line clinicians for the two groups above.

    After all, it’s not what we say that matters, it’s what people hear. At Health 2.0 I didn’t feel like I heard a lot of encouragement for the work of optimizing health and wellbeing for people with ongoing chronic illness.

    But that is just me and as an individual, I don’t matter much, unless my feelings are representative of many.

    I’d certainly love to know what a broad swath of the public and providers reflexively think/feel when they hear “Culture of Health,” but I think one would need a good survey to know…(polling THCB readers doesn’t count!)

    In the meantime, I kind of like “Culture of Caring & Better Health” as a complement…but I’m not a copywriter and it’s a bit of a mouthful.

    Thanks again for your comment and the work you do.

  8. Leslie,

    I’m glad you were able to attend the RWJF session focused on technology and family caregivers at the recent Health 2.0 conference. I enjoyed meeting you and talking with you about our work to build a Culture of Health. I know our conversation was super brief, so I’m glad we’re able to continue the conversation here.

    You’re right that a culture of care is incredibly important. It’s also a critical part of a national Culture of Health. I’m a family physician; I spent years working with patients and their families at a community health center, many of whom were elderly with complicated medical issues like the patients you treat. I’m personally passionate, like you, about pushing for a widespread culture of care. I’ve spent most of my career advocating for that, whether in my clinic, as a RWJF health policy fellow and for years here at RWJF.

    I’m also, however, passionate about other parts of a Culture of Health—like a culture of safety, a culture of equity, a culture of health value, a culture of no childhood obesity, a culture of wellness, a culture of easy access to important health information. All of those, for me, roll into the larger Culture of Health. As passionate as I am about those other cultures, if we only focus on one of them we simply will not achieve the best health for the most – and that would be a mistake.

    We understand that none of us alone can build this vast Culture of Health; we each have a role to play. There’s plenty of work to do – as you and I both know – to build cultures of care and safety and value and equity and wellness and health information.

    So, please do continue to do your part – building that culture of care – we all need you and millions more like you.

  9. Hm…very thought-provoking. I know I’m an idealist but I believe that the human connection and collaboration is an essential part of how healthcare providers should help patients. We have gotten into all kinds of problems because we deliver therapies and repair services without this collaboration and connection foundation.

    We might also consider hospital services differently (they are more acute and episodic) than an ongoing relationship in which clinicians help a person with chronic health problems.

    I certainly agree that healthcare providers have often resisted input and feedback from patients…a huge problem which hopefully is getting better.

    Let us know if you think of a good phrase to capture the service and relationship we clinicians should be having with our patients.

  10. Leslie, as a lay person turned end of life reform advocate after experiencing the troubled (understatement) terminal hospitalizations of each of my parents only 15 months apart, back in 2004/05, I vowed to get to the bottom of everyone’s failures — my own, my family’s, and medicine’s. The first mental moves I made were to ask why we believed care would be forthcoming; why we waited for it; why we lost the best remaining third of our parents’ lives in that limbo.

    I call what we expected “Mom and Apple Pie Care” and reflected on aspects emanating from medicine that led us to expect it. Ultimately, I redefined what hospitals actually provide: “bodily repair services under the direction of independent physician-scientists and nurse monitoring on some schedule.”

    This redefinition is the basis of effective patient and proxy advocacy. It’s a simple, neutral baseline from which we can all do what medicine advises us to do (but doesn’t describe why—because it’s too scary, nor how—because it’s too complicated).

    I perceive an unspoken subtext around “care” relating to a sense of ownership by medicine of the term and the potential for feeling offended when non-providers suggest that care is not forthcoming…as if the very act of questioning care-less-ness is offensive; as if care is the unique possession of only those involved in providing medical services instead of a human trait brought to any human endeavor.

    So I am of the opinion that a sea change would benefit providers and persients (my redefintion of “patients” that emphasizes personhood). By acknowledging what medicine actually provides on a daily basis and unwrapping providers from forced allegiance to caregiving, space may open for those who either intrinsically or by design go the extra distance to provide care in addition to treatment.

  11. Thxs all for these comments. Re Dr. Greene’s comment, I like it but again I think it skews prevention/population health.

    I myself think of all doctors (and clinicians in gen) as being OPTIMIZERS of health. I’m not sure I can “design health” for an older person suffering from a lot of problems, but I can always, always help a person design ways to optimize her health and wellbeing. As William Palmer says, holding someone’s hand and caring is powerful.

    I will prob write another post about health vs health care vs healthcare. Briefly, I think of health as a combo of how you’re feeling and how well your body/mind is working. Optimizing health means working to improve those, preferably in a way that’s collaborative.

    How to optimize health? It’s different when you consider a population versus an indiv patient, and certainly you should prioritize different approaches if you’re optimizing the health of a younger set versus a nursing-home population.

    I like wellbeing more than wellness.

    But again, mostly what I want is for people with chronic health problems to suffer less than they do now…

  12. :We have warned often on Science-Based Medicine to beware the “one cure for all disease.” The greater the claims for any treatment, the more improbable those claims become, and the greater should be the level of skepticism.

    Biology is complex, and diseases have many causes. It is highly improbable that any one treatment will address a significant portion of human illness. Skepticism should also be high for any intervention that is claimed to address diseases or disorders that seem to have very different causes.

    The “self healing” gambit, while appealing, is also not realistic. Our bodies do have some ability to heal themselves. This ability to fight off infection, heal wounds, and compensate for illness can keep us going for many decades. The various systems of the body, however, break down in many ways, may be overwhelmed by an infection, can suffer trauma, or may have been suboptimal in the first place (such as with a genetic mutation). Entropy always wins out in the end.

    We do not have an infinite ability to keep ourselves forever in perfect health. This is a religious belief that runs contrary to overwhelming scientific evidence. It’s a seductive belief, however.

    The reality check of science may be disappointing to our emotional desires, but at the same time it has given us the actual ability to prolong life and improve quality of life significantly. I personally would never trade the hard-won knowledge of science for the comforting fictions of the cure-all.”

    http://www.sciencebasedmedicine.org/the-miracle-cure-for-everything/

  13. I vote for #cultureofcare – we certainly don’t have one now. Nor do we have a #cultureofhealth, either.

    If we did, no one would live in housing built on toxic sludge, or live in poverty, or a host of other unhealthy “stuff” that people do every day, either by chance or by choice.

    #cultureofcare also communicates more partnership opportunity, IMO.

  14. Thanks for this thoughtful post and to Gilles Frydman for pointing it out to me. It was great meeting you at health2con. I also resonate with your points as a caregiver.

    I have a lexicon variance though. Your use of “culture of health”, I was thinking of as “culture of wellness. I was just last evening working to clarify with another health colleague, what the difference between wellness and health were. But I digress.

    The fact is I agree with your distinction of health (or wellness) as being more about prevention while care is about mitigation. Across the continuum of life, we certainly need both health/wellness and care, as lack of either/both results in a general decline in health. There is a role for all players, providers, payers, patients, caregivers, etc. in both contexts and of course we know we need more cooperation and integrated action among all these parties.

    I suppose one could see care as inclusive in culture of health, and that the person who made that statement to you was just being overly narrow, and/or one could make the care distinction to put a fine point on the need to mitigate versus only preventing.

    I like the cultureofcare meme. It works for me.

    On further thought, from a “how it feels” stand point, care has a more compassionate, even spiritual, and, well, caring tone to it denoting something distinct from healthcare which has stinger associations to science, material values and objectivity which can be damaging at extremes when people do need more care than (medical) treatment. I recognize that this point of view belies a material spiritual dichotomy in my thinking is a challenge as a society where more integrated health & care would benefit us all.

    Thanks for triggering these thoughts.

    Be well (cared for). 🙂

  15. This remark recalled to me a favorite quote from #health2con:

    @cadelarge: Doctors as designers of health versus treaters of sickness? – What a lovely idea. #health2con

    This is attributable to Dr. Greene. The context was about a potential future evolution of the role of doctors in society. Controversial but considerable.

  16. When we are drained of useful medical interventions and we believe there is nothing left to suggest, no hope left–the patient is finished–our care and concern and respect for the patient is still a loving gift to his health and well being and maybe to his final passage. Our “well” is never really dry.

  17. Agree with the “blame the victim” thoughts. Prevention is being way oversold and is frequently masquerading as some form of reducing utilization. The opposite is true. People are being charged high copays for chemo while your colonoscopy is free. There is something crooked about making access to care more difficult for the sick than for the well. Perhaps it’s time to get back to our “sick care” system so it doesn’t wellness itself to death.
    The meme thing is hard. How about: “Wellness didn’t work out…now what?” or “Prevention: the things you do before you get sick.”.

  18. I have to agree that the emphasis in that “Culture of Health” does not clarify the issue that a patient has to deal with, and in a perverse way, blames the patient for his ailments, without regard to why or how those ailments occurred. Just think of person hit by a car or by a genetic condition to be reminded of the need to put “care” back into the equation. And it isn’t really health care, but care of individuals that needs the emphasis.

  19. Thank you for this comment; helps keep me blogging!

    I am sure we can find a way to promote the upstream health activities while still supporting better healthcare for older and sicker people.

    Don’t suppose you can suggest a meme? Any thoughts on “Culture of Care”?

  20. Thanks for the insightful post Leslie. Great points that take us to the, “boots on the ground” of health care for the aging.

    Wish you could be my doctor when I get old(er).

  21. Agree w you. Of course, physicians should be familiar with wellness and we should encourage our patients to access these upstream resources. But yes, someone’s gotta do a better job caring for the sick, and preferably before they are in the hospital. (Although that’s worthy work too.)

    pcb, can you suggest a meme?

  22. I used “healthcare” 5 times; I use it to refer to care that comes from our conventional organized system (e.g. things that are usually/often covered by health insurance). Things that people to do influence their health, I call “health care”.

    As physicians we can’t create health, but we certainly can do a lot to help people improve their health, and their “health care.” If health is how people feel and/or how their bodies are working, we often have the expertise to directly offer assistance and advise as to what they can do to improve their health.

  23. The culture of health is mostly beyond our role and learned in kindergarten. things like eat your veggies, sweets/junk food in moderation, think about where your food comes from, exercise regularly, get good sleep, avoid smoking, moderate alcohol use (if at all), wear your seatbelt, etc.

    You don’t need to pay doctor level salaries to promote these ideas to people.

    Wha physicians and other clinicians should be doing is trying to create a robust and rational “sick care system.” That’s what we’re here for, something isn’t working right, we’ll try to figure it out and help manage it as best we can.

  24. As physicians, we have no ability to create health or bestow it upon our patients.

    I’d begin by substituting “medical care” for “healthcare” every time it occurs in your post.

  25. “We shouldn’t need a sick care system!”
    __

    Right. That sentiment runs dangerously close to a “blame the victim” mentality.

    “Let’s not just bash the “sick care” system; let’s inspire ourselves to take better care of those who are sick and suffering.”

    Exactly.

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