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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lawyerdoctorJudy JohnstonElizabeth RankinMike PainterBart Windrum Recent comment authors
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Craig Delarge
Guest
Craig Delarge

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.

Judy Johnston
Guest

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… Read more »

Granpappy Yokum
Guest
Granpappy Yokum

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.

lawyerdoctor
Guest

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… Read more »

Craig DeLarge
Guest
Craig DeLarge

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.

Mike Painter
Guest
Mike Painter

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… Read more »

Leslie Kernisan, MD MPH
Guest

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… Read more »

Bart Windrum
Guest

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… Read more »

Leslie Kernisan, MD MPH
Guest

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… Read more »

Elizabeth Rankin
Guest
Elizabeth Rankin

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.”

Leslie Kernisan, MD MPH
Guest

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… Read more »

@BobbyGvegas
Guest

: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… Read more »

Mighty Casey
Guest

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.

Craig DeLarge
Guest
Craig DeLarge

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… Read more »

@BobbyGvegas
Guest

“I like the cultureofcare meme. It works for me.”
___

Second that.

Perry
Guest
Perry

“Well” said, William Palmer.

William Palmer MD
Guest
William Palmer MD

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.

LeoHolmMD
Guest
LeoHolmMD

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.”.

Peggy Zuckerman
Guest

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.

Scott Strange
Guest

how about a meme like this

“Care can be complicated, but then so can people”

Scott Strange
Guest

People are complicated, why should we expect health be simple?