GeriTech

In Search of Technology that Improves Geriatric Care

Resolve to Become Fit for Frailty & Do Great Things in 2015

This week I came across a fantastic resource that I want to recommend to any and all who are serious about solutions to support aging adults. (Or healthcare, for that matter, since older adults are the power users of healthcare.)

It is the Fit for Frailty report, the second part of which was recently released by British Geriatrics Society.

Part 2, “Managing Frailty” is particularly important, as implementing good care is generally much harder than identifying those in need of better care. (Focus on the constraint, people. Implementation is almost always the constraint.)

For geriatricians, this is a nice resource summarizing the best of what we do. If you’re in geriatrics, read it and enjoy.

But I think this is especially valuable for the entrepreneurs, innovators, and health problem-solvers who are interested in aging.

Your job, as I see it, is to take the best of what we know and do in geriatrics, and make it more easily doable by everyone: older adults, families, communities, clinicians with no particular training in geriatrics, and even geriatricians. (I am eternally in need of tools that will make doing what I’m trying to do easier.)

Now here is a wonderful document that outlines how we go about modifying healthcare so that it’s a better fit for frail older adults.

Thinking you’re interested in older adults but not frail older adults? Think again.

Although frailty does have its own characteristics and isn’t the same as being old, or having multiple chronic conditions, products and services that meet the needs of the frail are the healthcare equivalent of universal design.

That is to say, the approaches we’ve developed for frail older adults — like carefully weighing the benefits and burdens of medications, and tending to the needs of the family — are generally good for all patients.

Plus, frailty is strongly correlated with healthcare utilization, so if you develop tools to better help frail older people, someone might be willing to pay for them.

Must-reads from the Fit for Frailty report

The whole report is worth reading, but below are the some highlights from the sections I think are especially important:
  • “Managing frailty” This page summarizes the core components involved in optimizing the health of a frail older person. I actually think most of these are good for all patients. Shouldn’t we “ensure that reversible medical conditions are considered and addressed” for everyone? Same goes for establishing systems to share health information. Of course, great comprehensive healthcare is expensive and studies usually find it’s not economically worth it unless you target “high-risk” patients. But some of these strategies are things that “low-risk” people could do for themselves, or perhaps use health savings account funds for.
  • Comprehensive Geriatric Assessment: This page details what’s involved in a geriatric assessment. Again, much of it sounds like things that are sensible to consider for all patients. The domains to check include:
    • Physical symptoms
    • Mental health (which includes cognitive function)
    • Level of function in daily activities (oh wait, that sounds like the macrofunction in my recent “What is health” model).
    • Social support networks currently available, both “informal” (family & friends) and “formal” (social services). This report doesn’t include online patient communities but that’s becoming an increasingly more common form of social support, although your online peers generally won’t check your symptoms or pick up your medications for you. 
    • Living environment, which includes mention of “ability and tendency to use technology.” (yeah!)
    • Level of participation and individual concerns. “i.e. degree to which the person has active roles and things they have determined are of significance to them (possessions, people, activities, functions, memories). Will also include particular anxieties, for example fear of ‘cancer’ or ‘dementia’. Knowledge of these will help frame the developing care and support plan.” In other words, understanding what’s important to a person!
    • Compensatory mechanisms and resources that the person uses to respond to having frailty. For non-frail adults, it is generally relevant to figure out how they are compensating for whatever health problems they have, although we routinely neglect to ask about this in a rushed primary care environment.
  • Holistic Medical Review: This is basically a comprehensive review of one’s health problems, and the current management plan. This means a careful check on the chronic medical problems, and thoughtful assessment to identify new health problems. This also includes a medication review. In other words, this is basically what one’s annual physical exam should involve, but often doesn’t.
  • Individualized Care & Support Plans: This page describes the key characteristics of a good care and support plan (CSP). I love love love that it’s described in part as an “optimisation and/or maintenance plan,” because that is exactly what is involved when it comes to older adults: optimizing rather than curing. Particular highlights include:
    • Determining what the person’s goals are
    • What actions are going to be taken
    • Who is responsible for doing what
    • The timescale and plan for follow-up and review
    • An escalation plan which describes what patient and caregivers need to look out for, and what to do. 
For more commentary on the Fit for Frailty highlights, also see Dr. Muriel Gillick’s excellent blog post on the topic, Learning from the Limeys.

Help and Innovations Needed

Needless to say, it’s currently hard to do the things above consistently. Even geriatricians struggle, because it’s there’s a lot to cover and keep track of.  (I’ve often thought that what we need is to build on project management software for care and support plans.)

Understandably, it’s hard to come up with tools that are a good fit for the complexity at hand, esp since healthcare as usual is already spectacularly ill-suited to properly managing complexity and allowing patients to participate.

But at least we now have a good resource to summarize what we can work towards. Fit for Frailty offers a blueprint for the kind of comprehensive person-centered care that everyone can benefit from.

Is your work fit for frailty? Shouldn’t it be?

The Trouble with Home Health Care & Care Coordination

Home health care is in many ways a fantastic service, especially for those Medicare beneficiaries who are essentially home bound due to frailty or illness.

But it’s often feels surprisingly hard to synergize with home health care.

The main problem, as I see it, is that home health care agencies have set themselves up to provide only administratively required communication with the ordering doc. (There are rules governing home health care, you know!)

Now, what I need is clinically relevant communication. As in, how is the patient clinically doing, so that you and I can coordinate our efforts together. This has apparently not been built into the home health care workflow.

And things get even more complicated when it’s a patient in assisted living, because then you have the facility nurse who should be kept in the loop as well.

Right now, I am trying to follow up on an elderly woman who lives in assisted living and has paid in-home aides (which are provided by a separate company).

I referred her to home health care a few weeks ago for help managing her skin. On one hand, she was starting to develop a pressure sore from sitting too much in the same position. And on the other hand, she had a fungal rash in her groin, under her incontinence brief.

I prescribed an antifungal cream to be used twice a day for two weeks.

Now it’s been three weeks, and the pharmacy is requesting a refill.

Well…what’s going on with that rash?

What I want to do is send an email to everyone who is involved and might know something. That means an email that would include:

  • The patient’s son, who visits weekly. He’s not a medical expert but he has the most at stake in ensuring that things are checked up on, plus I had him take a look at the rash when I visited.
  • The home health agency RN
  • The paid home aides; I strongly urged them to start keeping a log of the patient’s skin condition at my last visit. (Is that part of their job? Should it be? Who knows.)
  • The facility RN, who is supposed to keep tabs on things when residents have active health issues, and who helped recruit home health care to the situation
  • The pharmacy, to tell them why I’m not renewing the medication right at this moment.
I would also like to loop in the primary care doc, but her patient hasn’t been able to come in to see her for a while, so she is the least actively involved member of the care team at this particular moment.
The great thing about email is that you can address it to several people, and when someone replies everyone else can see the response.
The bad thing about email is that it’s not secure. It is really not an option.
So what am I left with? The doctor’s old standbys: the phone and the fax.
Oh sure, someone out there has developed care coordination software that includes secure messaging. 
But if we are not already all subscribed to it (which seems unlikely, unless you consider people working in an integrated care system), it’s really not usable unless someone wants to go through the hassle of getting each individual player subscribed.

So fax it is. Fortunately my EMR allows me to associate a given patient with a variety of other providers (and their fax numbers). It’s still a minor pain to fax a message to several different people, but it’s faster than calling them all.

BTW, I do occasionally call home health care agencies and ask to talk to the nurse. They are usually so surprised to hear from me…because most doctors never try to coordinate much.

What came first: the chicken or the egg?

What will come first: the communication framework or the desire to truly coordinate care?

Health Care for Dummies (and Innovators): In search of a practical definition of health

[This post was first published on The Health Care Blog on 11/26/14.] 

For a while now, I’ve been working on an ebook about making digital health more useful and usable for older adults.

(Don’t hold your breath, I really have no idea when it will be done. I can only work on it for about an hour every weekday.)

In reflecting on the health innovation conferences and conversations in which I’ve participated these past few years, I found myself musing over the following two questions:

  1. What is health? 
  2. What does it mean to help someone with their health?

After all, whether you are a clinician, a health care expert, or a digital health entrepreneur, helping people with their health is the core mission. So one would think we’d be clear on what we’re talking about, when we use terms like health and health care.

But in fact, it’s not at all obvious. In practical parlance, we bandy around the terms health and health care as we refer to a wide array of things.

Actually defining health has, of course, been addressed by experts and committees. The World Health Organization’s definition is succinct, but hasn’t been updated since 1948:

“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

A more recent attempt to define health, described in this 2011 BMJ editorial, proposed health as “’the ability to adapt and self manage’ in the face of social, physical, and emotional challenges.”

This left me scratching my head a bit, since it sounded more like a definition of one’s resilience, or self-efficacy. Which intuitively seem much related to health (however we define it), but not quite the same thing.

I found myself itching for a definition of health that would help me frame what I perceive as the health – and life – challenges of my older patients.

Also, it seemed impossible to articulate how digital health tools might help us care for an aging population, if one didn’t start with a practical definition of health.

So after doing an hour of research in the literature (and finding endless scholarly rabbit holes), I ended up trying to sketch a model of health that felt true to my experiences.

In this post, I’d like to share what I came up with, and get your feedback. Then in a follow-up post, I’ll write about what this might mean for defining health care, and our efforts to improve or facilitate health care.

What is health?

Health is a dynamic state. For an individual, it involves three core components:

  • How are you feeling? How do your body and mind feel? Are you experiencing any pain? Bothersome sensations? Mental distress? This component of health addresses the individual’s experience of suffering. 
  • How well are your body and mind outwardly working? Are your body and mind working as you expect them to, or need them to, or want them to? Can you get around physically as you usually do? Can you manage your thinking tasks? Can you see, hear, speak, and otherwise communicate effectively with others? This component addresses the individual’s ability to leverage body and mind in order to manage one’s usual activities and life tasks. 
  • How well are your body and mind internally working? This component relates to one’s inner physiology and function. When we peer inside, whether with modern technology, via the careful pulse auscultation used in some cultures, or any other method, is anything awry? Do we find signs of disease, disorder, or disruption? In Western medicine, we consider the workings of organs and cells, but other cultures have their own “inner workings” that they assess when evaluating health.

These three components are in constant interplay with each other. Right now I’ll refer to them your wellbeing, your macrofunction, and your microfunction. (But I’m not sure those are best terms.)

These three components of health are also in constant interplay with our social and physical environments, as well as with our nutrition and our “lifestyle choices.” For instance, rich social encounters and purposeful work improve wellbeing, as well as immune function and other aspects of our microfunction. Air pollution might make us cough, and can negatively impact our lung function, along with other less visible parts of our health.

Are these many external factors, and our behavior choices, synonymous with “your health”? I would call them influences on your health, or in certain cases “health care”, rather than your health itself. (And they aren’t diagrammed above, although I’d like to add them eventually.) These factors are incredibly important, but we confuse matters when we conflate things that influence health — such as access to clinicians, clean water, walkable cities — with the actual health of an individual.

Why does a person’s health matter?

Better health is an important end in of itself.

But to a large extent, health is a means to a more important end: that of living life.

In other words, being able to do the things we care about, need to do, and want to do. Being able to do things that give purpose, meaning, and pleasure to our lives. Being able to do the things that make us feel like our selves.

This is kind of obvious, but it’s actually fairly easy to lose sight of this when we get immersed in the weeds of health and health care. (Which is why the Unmentionables at Health 2.0 is so fantastic: it’s a much-needed reminder that health serves life.)

[Caveat: There is a lot of overlap between the life activities, but I haven’t yet figured out how to diagram this. Graphic design is not my forte.]

What is a health problem?

As a doctor, my job is to help people address their health problems. And I’d like for the digital health entrepreneurs to create tools that work better for this purpose.

So what is a health problem? How to define what people seem to need help with? How to define what digital health tools should help us – whether we are a patient, a clinician, or a family caregiver – address?

Here is a practical definition: a health problem is anything that is “wrong” with one or more of the three components of health above.

For instance:

  • Wellbeing Problems: Examples include being in pain, being fatigued, having insomnia, feeling depressed, feeling anxious, feeling short of breath, and so forth. Many symptoms, pains, discomforts, and any other forms of suffering fall into this category.
  • Macrofunction Problems: These might include having difficulty walking due to arthritis, problems exercising due to shortness of breath, or problems thinking due to dementia. You could also include vision problems, hearing problems, and speech difficulties due to stroke. These issues often cause noticeable functional impairments.
  • Microfunction Problems: These would include problems such as having impaired glucose metabolism, high blood pressure, osteoporosis, kidney disease, as well as early stage cancer.

You’ll notice that problems with wellbeing and macrofunction are primarily person-defined. It’s the affected person – sometimes known as “the patient” – who experiences suffering, or difficulties in how the body and mind are working. Whereas microfunction problems are generally “expert-defined”: nobody knows they have osteoporosis until clinicians tell them.

Many diagnoses, diseases, or health stressors will cause problems in all three parts of health. For example, cancer symptoms and the related functional impairments (e.g. problems doing anything you can usually do) are the consequence of the cancer cells running amok within.

Congestive heart failure might cause uncomfortable dyspnea, as well decreased exercise tolerance, such that a person has difficulty managing usual ambulation and activities.

Of course, there is a lot of room to argue about what constitutes “wrong” with a given health component. Cultural and social factors influence how people perceive their own suffering, or overt impairments. And we could quibble endlessly about what is ideal blood pressure, and how we might otherwise assess how right or wrong a person’s body and mind are internally working.

Still, in many cases, if most of agree that something seems “wrong” with a given component of health, this should provide us with a decent practical starting point for identifying health problems.

Do we need to distinguish between microfunction and macrofunction?

I believe we do. Problems with macrofunction are the things that people notice in themselves (or in others, when it comes to cognitive macrodysfunction). These are what patients are often most concerned about.

Macrofunction problems, along with forms of suffering, are also what directly impacts people’s ability to participate in life tasks, and their short-term quality of life.

So helping people correct, mitigate, or adapt to these types of functional impairments is incredibly powerful, if you want to address health problems in a way that makes people’s lives materially better. This is an approach that is common in geriatrics, palliative care, physical and occupational therapy, and behavioral therapy.

Microfunction, on the other hand, is what people need technical assistance to assess. (Historically that assistance have been clinicians, but we’re on the cusp of seeing advanced diagnostic tools in the hands of the public.)

Much of the work that we doctors do in modern medicine, especially in primary care, is address physiologic problems that are scarcely perceptible to the affected person: high blood pressure, high cholesterol, type 2 diabetes, kidney disease, asymptomatic atrial fibrillation.

We do this work because we are trying to prevent or delay more overt health problems, such as those associated with suffering and macrodysfunction. So it’s certainly worthwhile work. But it doesn’t always feel satisfying or worthwhile to patients, especially if they are pre-occupied by other problems which are causing suffering or overt functional impairments.

In fact, it seems to be fairly common that patients and clinicians are focused on different aspects of health. A typical example: a doctor might decide to unilaterally prioritize tinkering with the microfunction, such as by prescribing more statins, even though a patient’s most pressing concern is falls or pain.

Feedback? Suggestions?

All models are wrong and incomplete, but some are useful, as the saying goes.

Is this model of health and health problems useful?

What do you like, and what do you think I absolutely should change?

[Many thanks to Leslie Salmon-Zhu of GraphicRecorders.com, for drawing a preliminary version of Three Components of Your Health graphic.]

What A Caregiver Said Was Hard About Hospice

[November is National Family Caregivers Month. In this post, I share the eye-opening letter I received from a Geriatrics for Caregivers reader who has cared for his mother — now 100 years old — in his own home for 3 years. She is now on hospice. 


The writer has given me permission to share this letter, noting that his mother, a former teacher, would have been glad to know people were learning from her story. Please note: all emphasis below was added by me.]

Howdy Dr. Leslie –
Mom has progressed quite a ways down the road and actually I am quite amazed that she is still with us. I think that, somewhere in the back of her head, she had the 100th birthday in her mind as a goal. She has deteriorated quite a bit in the last 10 days since her birthday.

Two months ago we placed mom on the local hospice program (we have one, run by the hospital) and we were just recertified for another 60 days. You may remember the difficulties our hospital was having and the possibility that it might actually close due to some incredibly bad CEO’s and bad management. Fortunately, they have located a fellow who used to be the CEO here about 15 years ago and he has gone on to form his own hospital management company and they have several hospitals located around the country. Things appear to be on a new track.

Now to your question – the thing that has probably frustrated me the most in caring for my mother are two:

  1. the lack of resources and available training to function as a caregiver and
  2. the continuing lack of resources that I have received from our hospice program. 

As mom progressed, I had located several dementia units that I felt would be a good match and found that unfortunately 3 of them have discontinued their dementia care units due to rising liability issues. The remaining ones didn’t make me feel comfortable.

Since mom has been unable to walk back in February, I have had one night off and I know it is beginning to affect me. I have found caregivers (including my sister when she is able to come up) but none will stay overnight and none will do any lifting. Even the hospice program offers volunteer caregivers but only for about a two hour time period and they do not do lifting. We tell caregivers to watch out for their health, but then don’t provide the resources to accomplish that.

A local nursing home now offers respite care and our hospital has once again started accepting Medicare and Medicaid patients for respite care up to 5 days. (Prior to this, the other CEO refused to accept anyone except self pay for respite care).

Much of what hospice offered I didn’t need: harp player, chaplain, social worker, respite volunteer (although I have utilized her 3 times when I haven’t had a choice). What I have taken advantage of is a personal care individual who washes mom’s hair and trims/cleans her fingernails as my eyesight made this difficult), a physical therapist to see if mom could improve her ability to stand on her own as an assistance to me when I was changing her and of course, the nurse. All of them, with the exception of the physical therapist seemed to come with their own agenda of what they wanted for mom’s care – despite my stating and restating what I wanted done.

The PT was cut after the first 60 days. Hospice offered things such as pull-ups, latex gloves and a pharmacy program from somewhere in Pennsylvania – all of which I have taken care of already. I try to maintain a routine for mom’s sake and they seemed to want to constantly change the routine both with their actions and constantly changing scheduling of visits. I had also thought that the hospice would provide more help in securing respite care and possible assisted living assistance such as help with requirements and paperwork, but found I knew more than they did. 
They just recently received a renewal of their gold star accreditation. The hospice nurse tried to change some of mom’s medication and ordered new ones despite the fact that her primary care doctor had just recently reviewed mom’s medication and was satisfied with what she was taking. The nurse even tried to convince him to prescribe morphine (just to have on hand in case . . . ) which he refused to do. Her hospice doctor even tried to override the primary care doctor on the morphine but eventually backed off. Both the hospice, hospital and clinic are under the same company.

The head nurse and I have had multiple discussions about their program, but I’m still not comfortable with it.

I have so far decided to keep the hospice for one main reason – I think it will make it easier to get mom into the hospital’s respite care if I should get sick or need help due to an accident in a hurry.

It was my feeling that the health care system should be of assistance to me and yet I have found them to unable to do so and in a few cases, an actual obstacle. I understand that some of this may be due to being in a low income rural area, but I have spoken with others who have experienced similar problems with the health care system and hospice programs even in larger cities.

Hope that helps a little. The good thing is that it has pushed me towards trying to make things better for other families once my commitment with mom is completed. 

[A RAND study recently valued the care provided by family caregivers to the elderly at $522 billion per year. This letter shows us what some of that care actually entails. This Thanksgiving, don’t forget to thank the family caregivers you encounter. They are doing amazing work and we don’t thank them — and support them — nearly enough.]

What Caregivers Say is Hardest About Helping Aging Parents, and Atul Gawande’s Insights in Being Mortal

Several weeks ago, I asked my caregiving audience at Geriatrics for Caregivers a question:

“What’s your biggest frustration with helping aging parents, or aging loved ones?”

The answers were enlightening. Nobody, unsurprisingly, said avoiding delirium, or minimizing medication side-effects, or any of the other very important things we talk about in geriatrics.

Instead, the biggest frustrations overwhelming had to do with managing relationships, and finding ways to provide help and support, while respecting the older person’s desire for autonomy and independence.

(Want to see just what people said is hard? I highly recommend you read their quotes here.)

So, I had a real “Aha!” moment when I read Atul Gawande’s new book, “Being Mortal,” shortly after hearing from the Geriatrics for Caregivers readers.
It turns out that “Being Mortal” is mostly about getting old, and about caring for those who are getting old. 
In other words, he has brought his signature style to the topics of aging, and caregiving.
But you could easily not know this if you’ve mainly read the press about the book. The media has mainly focused on this book being about “end of life,” and Gawande himself chose to highlight a cancer-and-the-magic-of-hospice story in his widely read New York Times op-ed. 
He also, when I saw him speak in San Francisco last month, chose to deliver his prepared remarks on the same topic: the better cancer death of his daughter’s piano teacher.
This struck me as a shame. Although as a society we certainly need to have more conversations about how we die, and how to make it better, we really need to have more conversations about aging, declines in independence, and caregiving.
(Full disclosure: My father died of cancer at age 61, while I was in medical school, and we certainly could have used more palliative care involvement. Rest assured that I consider terminal cancer a devastating experience well worth any and all improvement efforts. But I still think cancer and death are hogging the limelight.)

As far as I can tell, people would rather plan to die than plan to be old and slowly declining.

And I am pretty sure that right now people would rather train in palliative care than in geriatrics.

So. We need people to champion and spearhead a thoughtful discussion about what’s hard about helping older people, especially when they become frail and start to need more assistance. 
And we need good, compelling, readable books that can help people reframe how they might offer help to an aging parent, and what kinds of goals to strive for during those last years. 
I personally think Being Mortal is one of those books: a compelling read that could give families throughout the country some really valuable insights on how to help aging relatives during the last few years.

But in the end it will come down to what the family caregivers think, not me.

(I’ve already had one person tell me she thinks it’s “good for doctors.” Which it surely is, but I’m especially eager to find books that are good for families.)
At some point, I’d like to write a more in-depth summary of the many insights Being Mortal offers, when it comes to helping people manage aging and declines in independence. But as I’m not sure when I’ll have time to write it, I offer you instead a substitute: my tweets from Atul Gawande’s talk at the Commonwealth Club last month.
If you’ve read Being Mortal: what did you think of its insights on aging and caregiving?
[View the story “Atul Gawande Talks About Being Mortal” on Storify]