GeriTech

In Search of Technology that Improves Geriatric Care

chronic diseases

Capturing Data to Improve Medicare Primary Care: The Oak Street Health Story

[Today’s guest post is by Dr. Griffin Myers, whose innovative primary care clinic for Medicare patients, Oak Street Health, opened its doors in September 2013.]
Forgive the brief hiatus: we’ve been busy with a growing
patient community and plans for taking our model to new neighborhoods.
We left
off last time with a discussion of infrastructure, and today we’ll transition
to what that infrastructure can do. Again from the Institute of Medicine report
“Best Care at Lower Cost: The Path to Continuously Learning Health Care inAmerica,” here is the next of the 10 recommendations.
Recommendation 2: The data utility. Streamline and revise
research regulations to improve care, promote the capture of clinical data, and
generate knowledge.
The most common source of data used in healthcare today is
claims data. This generally includes (1) patient indentifiers, (2) CPT codes
(i.e., billing codes), and (3) corresponding ICD codes (i.e., diagnoses to
justify the services billed). Together those create a matrix of who has what
medical conditions and the list of interactions with the healthcare system they
have to manage those conditions. 
These data are provided by payers and are
useful in understanding if a particular patient received a particular
intervention. For example, payers can tell which women aged 42 to 69 had a
mammogram during the previous 2 years. For us, that’s an important Medicare
metric that we can use to make sure patients get the right preventive services.
It’s a great start, but we want to go further.
At Oak Street, we have a hypothesis that structured,
clinically relevant, validated data has more predictive power than claims data
alone.(Think Lawton and Katz functional scores, PHQ-9 depression scores, etc.) So we work hard to create that data in each of
our interactions. We structure our charts so the data that goes in is usable.
(Think fewer text boxes, more numbers and drop-downs, etc.)
Deciding what to structure is nontrivial. Do you want
structured data for labs and vitals? Yes. How about medications and allergies?
We do. Timed-get-up-and-go scores? Probably. And bowel sounds? Probably not.The
ultimate goal of all of this is to make care much more systematic. We want to “triage”
patients so we know who needs the most attention now. We
want to flag errors and gaps: the system should tell us which patient needs a
colonoscopy…I don’t want to leave that to an individual.
Of course, this description feels like a technology project,
but it’s really more than that. It’s about training and creating a culture
where the whole team is proud of the data we create. That’s hard, and we work
on that every day.
As you can see, this “foundation” is no small task. Are we
perfect? Not close. But we did start with a focus on the digital infrastructure
to run a practice and utilizing data to do some creative things to take really
good care of older adults. The tools to do this will only get better with time,
and we hope our structured processes can fill in the gaps in the meantime.
Griffin Myers, M.D., M.B.A. is a founder and the Chief
Medical Officer at Oak Street Health in Chicago. He is currently in his final
year of an emergency medicine residency in Boston. You can contact him at
griffin (at) oakstreethealth (dot) com.
Disclosures

The author wishes to disclose a financial interest in the
primary care model discussed above. Furthermore, he is a trainee in a
postgraduate clinical training program, and neither the program nor the
affiliating university endorses, owns, or has any formal or informal
relationship with the primary care model.

Two Must-reads from JAMA’s Critical Issues in US Healthcare

This week’s JAMA issue is titled “Critical Issues in US Healthcare” and wow, it is a goldmine of good reading for those interested in the state of healthcare today.

So far I’ve read two particularly outstanding articles that I want to recommend. (If you don’t have personal or institutional access to JAMA, apparently you can access JAMA “free for a limited time” by signing up for their JAMA Network Reader.) They are “Reliable and Sustainable Comprehensive Care for Frail Elderly People,” by geriatrician Joanne Lynn, and “The Anatomy of Healthcare in the United States,” by Dr. Hamilton Moses et al.

“Reliable and Sustainable Comprehensive Care for Frail Elderly People.” 

In this article, Dr. Lynn begins by describing some sobering realities:

“As the incidence of sudden and premature deaths has declined in the United States, the last part of most individuals’ lives has come to be marked by progressive chronic illnesses and diminishing physical reserves that engender self-care disabilities and frailty. Those who live past age 65 years now average 3 years of self-care disability at the end of life, needing long-term services and supports (LTSS). For those living past 85 years old, nearly half will have serious cognitive decline.”

The problem, as Dr. Lynn points out, is that our fragmented, specialty-driven, acute-care-focused healthcare system is poorly set up to help people during this phase of life, during which frail elders need comprehensive coordinated care that helps them maintain function and quality of life. Furthermore, much of what people need in the last phase of life is not covered by Medicare, e.g. supportive services that help older adults with their living needs.

Instead, Dr. Lynn notes that these needs have been treated as something that individuals should save for, and that families should step up to address. But this is a huge burden for people and families to shoulder, and will be even harder to maintain as the population skews older over the next few decades. (The ratio of working people to dependent and disabled older adults, which was 5:1 in 2011, is expected to  decline to 3:1 by 2029.)

Fortunately, Dr. Lynn has some solutions for us to collectively consider. She begins by urging society to recognize that “frail elderly people have different priorities and needs than they had earlier in life, and their care system must reflect those priorities.” She notes that discussions about living with frailty are largely absent from popular media and public conversation, and calls for “vigorous discussion about how people live well with frailty and how best to die.”

She then goes on to advocate for a number of sensible changes, including individualized medical planning, multidisciplinary assessment and management, new metrics of healthcare quality for this population, and redesign of healthcare delivery models.

Most importantly, she advocates for healthcare services and long-term services and supports to be considered equally important, and ideally integrated:

“A balanced system would give integrated multidisciplinary teams the tools and authority to match services with each frail person’s priority needs. Food, housing, transportation, and direct personal services are often more important than diabetes management or chemotherapy. Elderly people and their families often choose comfort, function, and familiar environments and relationships over small chances for cure or longer survival. Medicare’s open-ended entitlement to medical interventions contrasts with the limited and often inadequate safety-net programs to support personal needs, and this mismatch complicates development of a coherent and efficient service delivery system.”

The issue, of course, would be how to fund and finance such a program. Dr. Lynn doesn’t go into great detail in this article (her prior work has addressed this in the past), although she mentions the possibility of a “MediCaring” ACO taking this on. She also notes that we currently have some models, such as PACE (Program of All-Inclusive Care for the Elderly) and the VA’s Home-Based Primary Care, that we might learn from.

Obviously, this article doesn’t have all the answers for those of us who want better care for an aging America. Still, I like the way Dr. Lynn frames the needs that people have during this last fragile stage of life, and her description of how our current system is really a terrible match. I also agree that we need to have more conversations about those last frail years that many people will undergo.

Will we soon be moving towards a system of integrated healthcare and long-term care for frailer elders? Only if the public demands it, I think…which hopefully they will.

“The Anatomy of Healthcare in the United States“

This is a much longer article, combining very interesting summaries of healthcare data with thoughtful reporting on core trends in healthcare, and insightful commentary on some of the thorny tensions that really might rip the healthcare system apart if we don’t find ways to resolve them.

The juiciest data items are summarized in the abstract:

“The findings from this analysis contradict several common assumptions. Since 2000, (1) price (especially of hospital charges [+4.2%/y], professional services [3.6%/y], drugs and devices [+4.0%/y], and administrative costs [+5.6%/y]), not demand for services or aging of the population, produced 91% of cost increases; (2) personal out-of-pocket spending on insurance premiums and co-payments have declined from 23% to 11%; and (3) chronic illnesses account for 84% of costs overall among the entire population, not only of the elderly.”

In short, we healthcare providers have been charging more and more, and administrative costs have been going up. Out-of-pocket spending stinks for patients but so far apparently hasn’t been rocketing up in the same way.

And surprise surprise, chronic illnesses are driving most of the cost. (Cue the crowd that loves to promote prevention as the main way we should manage the chronic disease.) To my surprise, this analysis found that 67% of the costs of chronic illness are in people younger than 65, but still, I expect that management of chronic disease will be very important to Medicare over the next 10-20 years.

My next favorite part is also nicely summarized in the abstract:

“Three factors have produced the most change: (1) consolidation, with fewer general hospitals and more single-specialty hospitals and physician groups, producing financial concentration in health systems, insurers, pharmacies, and benefit managers; (2) information technology, in which investment has occurred but value is elusive; and (3) the patient as consumer, whereby influence is sought outside traditional channels, using social media, informal networks, new public sources of information, and self-management software.” [Emphasis mine.]

And then there’s the highlighting of problematic tensions currently affecting healthcare. I will again quote the abstract:

“These forces create tension among patient aims for choice, personal care, and attention; physician aims for professionalism and autonomy; and public and private payer aims for aggregate economic value across large populations. Measurements of cost and outcome (applied to groups) are supplanting individuals’ preferences. Clinicians increasingly are expected to substitute social and economic goals for the needs of a single patient. These contradictory forces are difficult to reconcile, creating risk of growing instability and political tensions. A national conversation, guided by the best data and information, aimed at explicit understanding of choices, tradeoffs, and expectations, using broader definitions of health and value, is needed.”

Wow. It really is not often that I come across an article that clearly calls out several big problems and how they are intertwined. (Most articles just hack at one specific part of the problem…kind of the way specialists hack at one specific organ while no one summarizes the key overall problems for the patient.)

The article itself is long and a bit wonky, but overall much more readable than many health policy articles. There’s a very good section summarizing the changing role of patients and consumers in healthcare, and also an interesting section referring to direct-pay and “concierge” medicine.

Regarding team-based care and reallocating healthcare work among professionals, the authors make the following observation:

“…given the shift in orientation to measurement of success with populations rather than individuals, there is a struggle between efforts to manage professionals systematically and efficiently and traditional structures that reflect preference for autonomy, hierarchy, and historically based professional values. These factors, along with increasing patient assertiveness, create the primary management challenge of this era.” [Emphasis mine.]

So true, and what we are going to do about it I really don’t know. In general the strength of this article is in describing the situation and some very important conflicting forces that are keeping healthcare mired in dysfunction; solutions are obviously another (much more difficult) story.

I especially enjoyed the description of an “iron triangle” of conflicting forces:

  • Patient expectations for individual care and personal attention; 
  • Physician autonomy; 
  • Value as defined by policy makers using health status of large groups and aggregate measures of cost.
This is really one of those articles that I will have to reread and highlight more extensively. 
Whew. We have our work cut out for us during these next 10-20 years in an evolving healthcare system. 

Getting to Better End-of-Life Care for Older Adults

[This post was first published on my Geriatrics for Caregivers Blog on 10/24/13. Am reposting here as I think the topic is relevant to the GeriTech audience.]

What is good care at the end-of-life, and how can we do better as a society?

This is the question that the Institute of Medicine (IOM) is now studying, and they have created a “Committee on Approaching Death: Addressing Key End-of-Life Issues.”

As part of their research into the current state of end-of-life care, the IOM is inviting the public to send them comments via this online comments page. (Comments must be submitted by November 1st, 2013.)

In particular, the IOM wants to hear about the following topics:

  • Barriers to and opportunities for improving care for individuals and their families,
  • Patient and family experiences with care, and
  • Health care provider experiences.

Now, as you can imagine, addressing end-of-life issues is a big part of what we do in geriatrics. Furthermore, I’m thrilled to see the IOM addressing this issue, since their reports are highly respected and often end up influencing policy and funding.

So I was very glad to provide some comments to the IOM, and encourage others — family caregivers, geriatric care managers, clinicians, or really anyone who has had personal experiences with end-of-life situations in the US — to submit comments as well.

The best reports, after all, result from the academics’ expert opinions being informed by the experiences of those of us in the trenches, trying to navigate real end-of-life situations.

My comments on Better End-of-Life Care for Older Adults

Below, I share the comments that I’m submitting in response to the IOM’s questions.

Question 3: If you are a health care professional, please tell us about your experiences in providing care to individuals with serious progressive illness or condition and their families. What are the problems, opportunities, challenges, and successes you encounter? Does the term “end of life” impact the willingness of the individuals you work with to engage in the provision of care or the willingness to receive it? Please indicate what type of professional you are (discipline/specialty).

I’m a geriatrician and general internist; I used to work in a federally qualified health center but now I have a small consultative practice, which complements existing primary care. I have special interests in educating family caregivers, and in leveraging technology and online resources to improve geriatric care.

Problems with end-of-life care:

  • People often haven’t reflected on, and then planned for, how they’d prefer to die.
  • Just importantly, they haven’t planned for the type of medical care they want in their last years of life.
    • Specifically, people don’t think of how they’d prefer to orient medical care during those last years when they may be steadily declining due to dementia or other chronic illnesses and frailty.
  • Patients and families often don’t realize it when a chronically ill person is likely in the last few years of life.
    • This is partly because clinicians often don’t discuss prognosis and when death might happen. And patients tend to not ask, unless they’ve been diagnosed with cancer.
  • Helping patients and families understand that they are probably in the last years of life is often quite hard.
    • For clinicians, it takes time, it takes good communication skills, and it takes a willingness to engage in an emotionally charged conversation.
    • Most primary care clinicians are lacking the time and training to have these conversations.
  • My personal experience is that as a doctor it’s been easier to discuss prognosis and end-of-life planning when working on a hospital-based palliative care consult service than in a primary care setting.
    • Because palliative care consults tend to happen in the context of an acute health crisis, I think this helps everyone focus on a difficult topic.
    • In the outpatient setting, there is a lot of pressure to postpone awkward topics. Plus it’s very hard to find the time to open the can of worms and deal with it compassionately.
  • Elderly patients often have their care divided between many specialists, each very focused on his or her diseases of interest, and they tend to want to do everything possible for those disease.
    • Primary care doctors struggle to integrate the care.
    • We have no good methods for helping patients and doctors figure out when to start shifting the goals of medical care, other than signing patients up for hospice, which tends to happen very late in the game, if at all.
  • We under-use palliative care, both for symptom management and for thoughtful discussion of goals for medical care.
    • Many people – patients, caregiver, clinicians – think that it’s just for the very end-of-life, and don’t realize that it’s an approach that can be pursued without “giving up” or signing up for hospice.
    • I’ve often witnessed families turn down palliative care, even though they would’ve likely found it beneficial. Suspect this is boils down to communication issues.
    • Other families who would like palliative care services find themselves unable to access them, especially in the outpatient setting.

Opportunities:

  • I like the POLST paradigm and find using POLST helpful, esp as a framework to guide a conversation about what kind of care a patient wants when future health crises occur. It shouldn’t be the beginning and end of advance care planning, but it’s a helpful tool.
  • We now have easy-to-use online tools to help individuals and families reflect on preferences for care in the last stages of life. I like PrepareForYourCare.org, and also TheConversationProject.org.

Question 4: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?

The biggest barrier to better end-of-life care for older adults — or those suffering from serious progressive illnesses — is that our current paradigm for end-of-life care is best suited to supporting people as they die of something relatively predictable, like advanced cancer.

We don’t have a wide-spread approach to help older people – and their families — through their last few years of decline. (This stage — in which living, declining, and dying overlap — is very compellingly described in Katy Butler’s recently published book, Knocking on Heaven’s Door. )

Incidentally, this is the geriatric approach, but right now it’s treated as an art practiced by only a small number of clinicians, rather than a broader approach around which to organize care services for millions of aging adults.

Other barriers to better end-of-life care:

  • Primary care clinicians don’t have the time and training to discuss planning for last stages of life with patients and families.
  • Older adults find their care split between multiple specialists.Primary care clinicians often are not able to help patients and families coordinate care and navigate through the last stages of life.
  • Palliative care services remain largely based in hospitals, and are hard to access in outpatient setting.
  • The conversations needed to help patients and caregivers plan for the last stages of life are poorly reimbursed.
  • Society generally favors medicine having a role in saving lives and extending lives, rather than medicine helping people prepare for and cope with physical decline, and eventually death.
  • Intensive medical services (hospitalizations, diagnostic tests, specialty consults) are easy to get. Services to support elders and caregivers at home, or to help them manage chronic illnesses at home, much harder to get, even though these services are especially important during the last stages of life.

Question 5: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?


Three key changes to improve end-of-life care for older adults:
  • We should broaden end-of-life to mean the last years of life, and we should develop a healthcare pathway for chronically ill and declining people who are likely in their last years of life, as is described in this “MediCaring” white paper by Dr. Joanne Lynn.
    • Of note, the UK has developed a Gold Standards Framework along similar lines; we should study their approach and try to learn from their work.
  • We should provide primary care clinics with the time, training, and tools to help patients and families engage in meaningful planning for the last stages of life.
    • This is especially important for those primary care clinics that serve older adults, as navigating the last stages of life becomes relevant for just about every older person.
  • We should plan end-of-life services differently for children and younger adults than we do for the larger population of (mainly older) people who are likely to experience decline and dependence before dying.
    • Although these populations have some overlaps in their end-of-life needs, we’ll do a better job figuring out how to meet their needs if we consider them separately.

——


Decline, death, and dying will always be challenging for people and their families, as well as for the clinicians who serve them. Still, today in the US it often ends up being much more difficult and distressing than it has to be.

If you’ve had personal experiences with end-of-life situations, I hope you’ll share your stories and ideas with the Institute of Medicine. Remember, comments must be submitted by November 1st.

Medicine in Denial: What Larry Weed Can Teach Us About Patient Empowerment

[This post, which was first published on The Health Care Blog on 5/22/13, is the third and final part of a commentary on “Medicine in Denial,”(2011) by Dr. Lawrence Weed and Lincoln Weed. You can read Part 1 here and Part 2 here.]

It seems that Dr. Larry Weed is commonly referred to as the father of the SOAP note and of the problem list.

Having read his book, I’d say he should also be known as the father of orderly patient-centered care, and I’d encourage all those interested in patient empowerment and personalized care to learn more about his ideas. (Digital health enthusiasts, this means you too.)

Skeptical of this paternity claim? Consider this:

“The patient must have a copy of his own record. He must be involved with organizing and recording the variables so that the course of his own data on disease and treatment will slowly reveal to him what the best care for him should be.”

“Our job is to give the patient the tools and responsibility to organize the knowledge and slowly learn to integrate it. This can be done with modern guidance tools.”

These quotes of Dr. Weed’s were published in 1975, in a book titled “Your Health Care and How to Manage It.” The introduction to this older book is conveniently included as an appendix within “Medicine in Denial.” I highlighted it this section intensely, astounded at how forward-thinking and pragmatically patient-centered Dr. Weed’s ideas were back in 1975.

Thirty-eight years ago, Dr. Weed was encouraging patients to self-track and to participate in identifying the best course of medical management for themselves. Plus he thought they should have access to their records.

Fast forward to today. The Weeds’ book, appendix aside, contains many of the best ideas I’ve encountered regarding empowering patients and engaging patients.

This is because in the Weeds’ ideal world, healthcare would provide an orderly, consistent, dependable, and transparent infrastructure through which patients would move through as required by their medical needs, their preferences, and their goals.

The Weeds compare this vision of healthcare system to our existing transportation system. It’s an interesting analogy. They point out that travelers rely on expert service providers (i.e. pilots, travel agents, mechanics) as needed, but that the primary decision makers are travelers themselves, who are able to choose the destination, the route, and the mode of travel for a journey.

The Weeds use their transportation analogy to make a strong case for individualizing medical care according to patient preferences. They point out that two people driving across the country might choose completely different routes, depending on their preferences and needs, and that no one would expect travelers to conform to an “evidence-based” best route determined by experts.

They observe that similarly, no one should expect that two different people labeled with the “same” disease have comparable medical needs. They correctly note that “effectiveness is context-specific,” and that the patient really should be the one best positioned to determine effectiveness.

Hence the Weeds describe high quality, efficient care as emerging “case-by-case, each person finding a different pathway in a progression of many small steps, with each step carefully chosen, reliably executed, and accurately documented.” They also critique evidence-based medicine, which they feel interferes with the process of thoughtfully tailoring care to fit a patient’s uniqueness.

They propose that health care not be an “esoteric domain for specialized experts” but rather be seen as a “universal human pursuit.” They state that the health care system should be usable by ordinary consumers when feasible.

This is a very robust and well-articulated vision of healthcare that serves the needs and well-being of patients, rather than of providers. I especially liked the emphasis on patients learning to take an active part in individualizing the medical care so that it can best meet their needs, and would say this approach is essential if primary care doctors are to serve the role of expert consultants helping patients meet their health goals.

In fact, an entire chapter of “Medicine in Denial” is devoted to the need to develop a system of educating patients and helping them gain the skills to be more autonomous in healthcare. Particular good in this chapter is the Weeds’ explanation of why patient involvement is essential in two common medical situations: cases of medical uncertainty, and cases of chronic disease.

“In situations of uncertainty, the patient faces a set of choices, with substantial evidence for and against each choice based on the details specific to his or her own case. The physician cannot be relied upon to identify the individually relevant options and evidence without the right informational infrastructure. Once that infrastructure is available, reliance on the physician radically diminishes. The patient’s private judgment should control, as trade-offs are recognized, ambiguities assessed, and choices made. The choices are inherently personal.”

“[Chronic disease] cases start with great uncertainty, but often what needs to be done becomes reasonably clear from careful investigation and planning. Then the issue is execution, feedback and adjustment…It is the patient, not the physician, who must live with the risks, the pain, the trade-offs, the effort and time that decisions may entail…The patient is the one who must summon the resolve to make the behavior changes that so often are involved in coping with chronic disease. If the patient does not feel responsible for deciding what has to be done and is not heavily involved in developing the informational basis of that decision, then very often the result is “noncompliance” with doctors’ decisions.”

Given that in geriatrics, we are constantly trying to help patients navigate medical uncertainty as well as chronic disease, the above paragraphs really resonated with me.

Psst! Pass it on: patient empowerment is the underlying driver of “Medicine in Denial”

It’s this extremely patient-centered and person-centered vision of what healthcare should be that underpins the Weeds’ multiple detailed critiques of healthcare as we practice it now, and their proposals for how healthcare should be changed.

But it seems that “Medicine in Denial” has generally not been perceived as a book about transforming healthcare to support participatory medicine. For instance, Dr. Weed is not mentioned by name in e-Patient Dave’s recently published book “Let Patients Help,” nor is he mentioned in Eric Topol’s “Creative Destruction of Medicine,” two recently published books that emphasize the need for healthcare to provide more information and autonomy to patients.

This is too bad. Many people are currently in support of changing healthcare to better meet patients’ needs. But few have been as thorough, articulate, and perceptive about the obstacles to such changes. I’d also say that only a minority of writers seem to understand, as the Weeds do, the real challenges of managing multiple chronic illnesses over years.

Today we have a growing e-patient movement pushing for substantial changes in the patient-provider power dynamic. We also have the Internet making information widely available, as well as digital health technologies that can finally offer patients unprecedented assistance in accessing and organizing their own health data. Larry Weed was surely ahead of his time in 1975, but what about now?

Well, now it seems that Larry Weed is mainly thought of as someone who criticizes the way physicians approach diagnosis, or wants to reform the way they maintain medical information, or proclaims that all of medicine is in denial. This, I think, is in large part due to “Medicine in Denial” itself (starting with its title).

It’s a good book, but it is long, and feels somewhat sprawling. Who exactly is the intended audience? I found it a bit unclear. And what are the authors asking of the reader, other than to understand their analysis and agree that the profession of medicine is, in fact, in denial? The Weeds do describe how they believe medicine should be practiced, but the book lacks specific suggestions on how we might get there from here.

I found myself wishing the Weeds had worked more closely with an editor and – don’t laugh – some kind of a marketing or strategy consultant.

Because I think there is a market for their ideas, and that market is essentially the patients themselves, along with the patient engagement movement. It would be patients, after all, who have the most to gain from medicine adopting a more orderly and transparent approach to diagnosis and documentation. Likewise, it is the patients who have the greatest interest in chronic medical care being tailored to their individual needs, rather than proceeding according to evidence-based guidelines which may or may not be well-suited to their medical uniqueness.

So I found myself wishing that the Weeds would’ve addressed their book more directly to patients, and to those who are rooting for “disruptive innovation” in healthcare and hoping it will usher in a shiny new future of patient empowerment.

Summarizing my impressions of Medicine in Denial

My takeaway in assessing the contents of Medicine in Denial was this:

  • The Weeds’ vision of what healthcare should be is very sound, compelling, and in line with what many people – patients and healthcare experts – say healthcare should become. This book can and should be considered a manifesto for participatory medicine, especially since the Weeds do a particularly good job of emphasizing how we can individualize care according to the goals and preferences of patients.
  • The Weeds’ analysis of how the common practices of physicians – both in terms of cognitive work and of documentation — interfere with ideal healthcare is robust, detailed, and compelling. The flaws they identify in current practice are undeniably present and adversely affecting care. This should not really be a subject for debate (although it probably will be). The debate should be about what we can and should do to address these problems.
  • The Weeds’ proposals for alternative methods of delivering healthcare are intriguing, and deserve serious consideration. In this commentary I’ve touched on their proposals for how patients should be initially assessed (via standardized inputs and knowledge couplers, followed by clinical judgment and patient-provider collaboration), and how medical charting should be reformed to support comprehensive individualized care over time. Can these proposals really be implemented and operationalized at scale? I’m not sure, we would have to pilot the approaches, or better understand what happened in those smaller practices that Dr. Weed says adopted his methods several years ago.

In short, I believe Larry Weed and his son Lincoln are completely right about what healthcare should offer to patients, and what’s wrong with the way doctors practice now. Their analysis of what’s wrong touches on issues related to quality, outcomes, patient-centeredness, patient empowerment, medical education, the training of the healthcare workforce, and the personalization of medicine.

What to do about all that’s wrong about healthcare? These are the difficult questions that we are all wrestling with. I don’t know that implementing all of the Weeds’ ideas is the way to go, but I’d like to see their ideas being given more serious consideration.

“The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.”

Words to change medicine by.

TEDMED’s Chronic Diseases Videochat: Lots of Lifestyle, Minimum on Multimorbidity

Yesterday was the TEDMED Great Challenges virtual panel discussion on “Managing Chronic Diseases Better“. I listened and participated by Twitter. (See it here.)

I came out of the talk thinking they should rename their Great Challenge:

How Coaching and Lifestyle Modification Can Prevent Diabetes, Obesity, and Cancer, and Can Also Help Manage Diabetes. 

Because those were the main topics discussed, and also seemed to be the primary domain expertise of the Challenge Team.

Now, these are indeed worthy topics of great population health importance.

However, such a focus marginalizes the millions of Americans who need much more than coaching and lifestyle modification to manage their chronic diseases. It also offers little help to those of us — clinicians and caregivers — in the trenches who are struggling to help these patients with their complex health needs.

Another disappointment is that the discussion didn’t really address the challenges of managing multiple chronic diseases, also known as”multimorbidity”. This is unfortunate, since managing chronic diseases becomes a different — and harder — ball game when people have several of them. (Here’s one review of the evidence.)

This is especially true when people are older and frailer, or if they have cognitive impairment (which seriously impairs their ability to self-manage their chronic conditions).

And as any primary care provider can tell you, there are *lots* of people out there with multiple chronic diseases. The UpToDate chapter on multimorbidity (which relies in part on this report) lists the following fun facts:

  • Estimated 1 in 4 Americans have at least two chronic conditions
  • Estimated 2 in 3 Medicare beneficiaries aged 65+ have two or more chronic conditions, 
  • Estimated 1 in 3 Medicare patients has 4+ chronic conditions 

The UpToDate authors go on to say that:

“Multimorbidity is associated with staggering healthcare utilization and costs. The two-thirds of Medicare beneficiaries with multimorbidity account for 96 percent of Medicare expenditures.”

Doesn’t this sound like a Great Challenge to you?

Well, it seems this is not the Great Challenge TEDMED has in mind. This Great Challenges team was very strong on prevention and lifestyle modification, had a strong patient advocate (a younger woman with Type I DM), but had precious little advice on managing scenarios like the one I describe in this post.

What to do when a person with diabetes, high blood pressure, arthritis, glaucoma, and eleven
medications comes to the visit, where we discover uncontrolled blood sugar, too
high blood pressure, falls, urinary frequency, anxiety, trouble managing
medications, and social isolation?

This is managing chronic diseases as many of us experience it. We could use more innovative brainstorming sessions to work on solutions.

The TEDMED panel on the question I didn’t ask

Here is a question that was mistakenly attributed to me — in a twist of cosmic irony, TEDMED identified me as the author of a question that I would literally *never* ask —  followed by the initial answer provided by Dr. Micheal Roizen, Cleveland Clinic’s Chief Wellness Officer:

Q: “What do I do with patients who are resistant to any kind of help with their chronic illnesses, and with behavior change related to that? How do we convince patients who are resistant to treating his or her chronic disease?”

A: “The only ways are either educating them about what is important, or incentivizing them strongly.” (See the rest of the answer here; the details include coaching, environment modification — get the Chips Ahoy out of the room — and a nice $2000 bonus for those patients who succeed).

Dr. Roizen goes on to say that 63% of their patients with chronic disease have transformed. This is a nice result. But I doubt you’d make much headway using that approach with older patients suffering from multimorbidity.

Why? Let me start by answering the question that I didn’t ask.

What, in fact, do clinicians like me do when we come across older patients who are “resistant to help with their chronic illnesses”? Here’s what I do:

  1. Assess for cognitive impairment. Before I start “educating”, I look into underlying reasons for why the person can’t manage their health care, or otherwise isn’t following through on the care plan. In older adults, cognitive impairment is often discovered, once one looks. (Early dementia and medication side-effects are the most common underlying problems that I find in the outpatient setting.)
  1. Try to figure out how the patient and family see the illnesses, in order to understand what’s interfering with their ability to address the illnesses. Common things that turn up include:
    1. Financial problems getting the medications
    2. Overwhelmed by too many medications, by too much complex medical care in general, or by caregiving demands
    3. Skepticism about allopathic medicine or other doubts about our conventional proposed approach
    4. Misunderstanding how serious the illness is, or how treatable it might be
    5. Substance (ab)use
    6. Low health literacy

You’ll notice that many of the problems above are far more common in people with multiple chronic illnesses.

Now, I’m not against lifestyle changes and behavior modification. My goal, and I know this is the goal of many PCPs and geriatricians, is to figure out a mutually agreeable, and feasible, plan to help the patient with his or her health. Often this includes coaching on lifestyle (if I can help them get it) or environmental modification (if feasible). 

But a lot of it is figuring how to help patients follow-through on conventional medical management. Like picking one or two generic medications to focus on (a good opportunity to talk about what’s likely to bring the patient the most bang for their buck). Or picking a symptom to focus on managing. Or sitting together to review what the specialist said, and putting it in light of the patient’s overall health condition (and other chronic diseases).

The TEDMED panel on geriatrics and chronic disease

Another illuminating question and answer: here is the geriatrics-related question I had submitted via Twitter:

My Q: “So much chronic disease occurs in geriatric patients. Why aren’t there more resources targeted especially towards the elderly, or those with dementia?”

The question was directed to Dr. Dileep Bal, a public health officer from Hawaii, and you can view Dr. Bal’s answering the question here.

He gives a long detailed answer focusing on — surprise surprise — prevention and wellness. He says the “focus needs to be in keeping them well, especially for elderly
population. Fifty percent of our health costs are related to people in
their last year of life. So I think both from a financial, and from a
lifestyle point of view, specially for the elderly, you need to focus on
how do you keep them healthy.”

He also says “Keep the well elderly well at home, before they show up in my clinic.” He goes on to describe a program of preventive care including senior centers, exercise programs, and systemic dietary interventions (like limiting soda and fast food availability). He mentions people in their 90s participating in exercise programs, and the need to modify societal cues (McDonalds is mentioned).

Another physician on the panel, Dr. Deneen Vojta (whose bio highlights extensive experience in diabetes prevention and management) offered a different perspective. She noted that older women commonly do not list exercise and healthy eating as priorities, but rather care about their finances, friends and family, and staying in their home.

True that! Then Dr. Vojta goes on to describe how lifestyle changes should be framed as ways to achieve those above priorities. She doesn’t address how patients suffering from very symptomatic chronic conditions, such as heart failure and COPD, can be supported in making these lifestyle changes (hint: for many, it requires medication optimization so they can be more active).

Sickcare versus health education and coaching

One part of the talk that did resonate with me was when Amy Tenderich pointed out that as our healthcare system is really a “sickcare” system, it’s problematic to ask it to be responsible for prevention. She suggested that we might consider adding another arm to the system, which would focus on health education and coaching.

I like this idea. However, for those patients who are older and sicker, education and coaching needs to really integrate into their “sickcare,” both by helping patients navigate the sickcare system, and by taking their various diseases into account when providing health education and coaching.

For instance, I’ve seen many older diabetic patients develop mild dementia, and struggle with their diabetes care. They need help figuring out simpler and safer strategies for their diabetes. However, many diabetes educators don’t seem prepared to problem-solve around mild dementia. (Or perhaps they just don’t notice my writing “suspect mild dementia” in the referral? Would earlier definite diagnosis via brain scan help?)

Is TEDMED’s panel missing a key point of view?

I found myself wishing TEDMED had included an expert able to really discuss managing multiple chronic diseases in primary care, such as Ed Wagner, who pioneered the Chronic Care Model. (This commentary by Wagner on chronic care management addresses multimorbidity and person-centered care, and is a really fantastic read for those who have journal access.)

They could’ve also considered someone particularly focused on the unique needs of older adults. I might nominate someone like Cynthia Boyd, a geriatrician who has published fantastic articles on multimorbidity and on Guided Care, a program
that help older adults manage and coordinate the care of their many chronic conditions. (Her 2005 JAMA article on what happens when you try to apply clinical practice guidelines to a typical patient with multiple conditions is a classic. She also co-authored this very good 2012 JAMA commentary on designing healthcare for multimorbidity.)

Last but not least, although I’m disappointed in the way that the TEDMED talk skewed towards prevention and lifestyle, I can’t say that I’m surprised. Much of what I’ve come across these past few months, as I’ve been learning about healthcare innovation, is skewed towards younger, educated people who either want to prevent disease, or are heavily invested in the management of one particular disease.

This despite the fact that the experiences of older adults drive most healthcare spending, not to mention the impacts on these patients and their families.

In a nutshell

Older adults and those with multiple chronic illnesses are two very large, important, and challenging populations to care for. Improving chronic disease management for these groups is essential, both for the sake of the millions of patients and families affected, and because this group drives the bulk of national healthcare spending.

TEDMED’s team for “Managing Chronic Diseases Better” seems to have special depth and expertise in the prevention of chronic disease. Their recent videochat largely focused on healthier lifestyles, coaching, and prevention, and had very little on the crucial challenges associated with managing — not just preventing — multiple chronic illnesses. They also had little to say about the ways that chronic disease management often should change to meet the unique needs of older adults and their caregivers (such as adaptations when patients develop cognitive impairment). Conditions such as heart failure and COPD weren’t discussed.

I’ll end by quoting the intro to the 2012 JAMA commentary cited above:

“The most common chronic condition experienced by adults is multimorbidity, the coexistence of multiple chronic diseases or conditions.”

If TEDMED wants its Great Challenge to be relevant to really making management of chronic diseases better, I hope they will find a way to address older adults and multimorbidity in future events.

For more of my take on TEDMED’s Great Challenges so far, see this post about the Great Challenges overall, and this post about last month’s videochat on caregiving.