Listen to Alex’s career trajectory as an entrepreneur; how she discovered and publicized the “Unmentionaables“; the good and the bad of her leaving Eliza, and the incredibly important work she is doing with Archangels. All packed into 45 mins!

This is be available as a video below and a podcast on Apple and Spotify from Friday.

By GRACE CORDOVANO PhD, BCPA

Being a patient or a carepartner can be a lonely, powerless place.

There’s no high powered legal or lobbying team to help support you in your or your loved one’s health care journey. There’s no PR team at your beck and call. There’s no advisory board, no executive committee, no assistants, no chatbots or AI-powered technology coming to the rescue. There’s no funding or a company sponsoring your efforts.

There’s no course in how to be a professional patient or carepartner.

There’s no one there in the stillness and dark of the night, when you are in the quiet of your thoughts, the privacy of your personal space, where there are fleeting moments that you don’t have to be strong and courageous. There is no one there to console you, support you as you lay there willing to make a deal with the devil for the slightest glimmer of hope, the slightest bit of clarity, or slightest bit of peace.

As a the carepartner to a loved one who is sick or disabled, many wouldn’t second guess charging head first through a thousand wielded swords if it meant a hope or a cure.

As an advocate, the majority of the work you do is self-created, self-supported, and unpaid. A calling. An undeniable, magnetic force that pulls you in because you cannot turn a blind eye no matter how hard you try. Because you cannot bear witness to human suffering and not do anything. Because you’ve been there and you can relate to another’s pain, grief, and sense of hopelessness and it is unacceptable to not help ease the heaviness of another’s burden.

As an advocate, I know I am not alone when I wonder if my advocacy work is worth it. Does it all make a difference? What did over 20 years of advocacy work improve? Are all these hours of work into the depths of the night worth it? Is the constant mental, emotional, and physical effort of being perpetually on high alert going to bring change? Do the words spoken from the podium, the panels, keynotes, workshops, fireside chats, and the discussions that ensue after handing in my lavaliere or hand held microphone cause actionable change? Does anyone listen to the podcasts and interviews and change their business strategies? Do the business cards and LinkedIn connections exchanged matter? Do the thousands of hours I’ve spent carefully and thoughtfully placing words on paper in articles and blog posts to capture the patient and carepartner voice and perspective make a difference? Does the time spent dedicated to continuing conversations across 3 social media platforms matter? Was all the time I’ve spent away from my family, my children, on the road, traveling to conferences (often at my own expense) to amplify the patient and carepartner voice worth it? Are missing family occasions, children’s games, school events, outings with friends, as well as putting one’s marriage, self-care, one’s physical, mental, emotional, and spiritual being at risk worth it?

After over 20 years of advocacy work, when I close my eyes and reflect, I cannot unsee and unhear what I have seen:

• The people who have died horrible deaths because of cancer, with not a spot of dignity left.
• The parents who fought tirelessly to find hope of a cure or the gift of more time with their dying child.
• The people who have watched as their parents or grandparents died, sometimes slowly, unfathomable deaths, from their heart failure, dementia, cancer, diabetes, and other comorbidities.
• The people who struggle with their own cancer diagnosis while caring for their aging, sick parents, and their also disabled and medically complex children.
• The people who are disabled, who have been denied the critical care they need, the medical equipment and devices, and the standard of care treatments prescribed by their doctors, because insurance companies deemed them not medically necessary. Or worse, being denied their actual Medicaid.
• The people living with chronic illnesses who are denied their life-saving treatments by insurance companies daily, forced to see regressions, relapses, painful, sometimes irreversible progressions of their diseases.

The tears stream down my face as I recall the hundreds, thousands, of pleas I have been faced with over the last 20 years. Pleas, stories, cries for help that break one’s soul and leave you gutted.

There is a common denominator here. These people could not get access to the information they needed for the next step in their, or their loved one’s, care. Information they needed to:

· schedule a second or third opinion appointment

· to organize a tumor board

· to consider clinical trials

· to ask the right questions

· to pick the right doctor or hospital

· to fight an insurance denial

· to do a peer to peer and expedite care needed themselves

· to make an informed decision about an upcoming surgery or procedure

· to prevent a medical error from happening

· to fight an exorbitant medical bill

· to understand their diagnosis and treatment enough to know it wasn’t too early for palliative care

· to know that it was time for hospice

This is what information blocking looks like boots on the ground.

These are the realities people face when they are living with life-altering, life-limiting, absolutely earth-shattering diagnoses.

While patients and their loved ones can’t get the information they need to make educated, empowered decisions about their care, even while actively dying, hospitals, EHR vendors like Epic, as well as MANY other entities, have ludicrously shared and sold the same patient information for commercial purposes, to “improve hospital operations”, for “re$earch”, leveraging the legal loopholes of HIPAA, stating all is legal, this is business as usual. Without needing informed, explicit patient consent. Without any effort dedicated to patient education, public awareness, and transparency under the guise of “Nothing to see here”.

As patients and carepartners, WE WILL NOT STAND FOR THIS A MOMENT LONGER.

Thank you Ms. Judy Faulkner, CEO of EPIC, for your recent letter urging some of the biggest hospital CEO’s and presidents to oppose the proposed rules to improve interoperability and grant patients access to their information. You have made it crystal clear that you are not aligned with the real-world unmet needs and the barriers patient and carepartners face daily. Thank you for illustrating what paternalism looks like in 2020.

Thank you, Mr. Tommy Thompson, former governor of Wisconsin, for your guest column on why the proposed health IT rules would be a detriment to EPIC and Wisconsin’s economy. You have made it crystal clear that the business priorities of Wisconsin are of a greater importance than legal rights and the sanctity and dignity of the lives of all the patients of this great country of the United States of America.

Thank you for helping me refocus. Thank you for helping me answer the questions and address the self-imposed imposter syndrome that can momentarily cloud one’s perception. The answer is: IT IS ALL WORTH IT.

I am more laser-focused than ever before, more confident than ever that patients, carepartners, advocates, those in authentic support of first doing NO HARM, and those in support of partnering with patients and carepartners MUST to come together.

I want all patients and carepartners to know these truths: No one is coming to save us. Together, we can save ourselves and OUR healthcare as we know it.

The time is now to #UnblockHealth. I’m ready to blow the doors off this or at least die trying.

Respectfully Yours in Unblocking Health,

Grace Cordovano, PhD, BCPA

Grace Cordovano, PhD, BCPA is a board-certified patient advocate specializing in the oncology space, a patient experience enhancer, and information unblocker.

Several years ago both Microsoft and Google invested millions of dollars on a flawed assumption: If they built a useful and free healthcare application, people would flock to it. In both cases, the effort failed. At its peak Microsoft HealthVault was only able to enroll a few thousand—largely inactive—users. Google Health was discontinued after a few years.

The problem was (and is) that unlike almost any other business, healthcare is a negative good.

Even if it’s “free,” as was the case with both the Microsoft and Google offerings, most people find tracking their health to be, in some sense, an admission of frailty, imperfection and mortality. Except for occasional blips related more to vanity (weight loss is the prime example), when it comes to our health most of us are in denial. So when people talk about technology for patient engagement, I tend to pause and wonder: Should we be building apps and services just for patients, or for the people who care about them too?

To some degree, our health defines us. It not only shapes the way we see the world, it also influences how others see us. And that can be problematic. Many of us do not want our frailties exposed to others, even to those who care the most about us. I remember talking to a father who worried about his adult daughter, a brittle diabetic. He had cause to worry; his daughter had almost died several times from diabetic ketoacidosis, a serious complication of the disease. Nonetheless, she eventually refused to allow her father to discuss the disease with her.

“I’m an adult,” she told him. “This is my problem to manage.” I’ve seen the same situation with early-stage Alzheimer’s patients. They may realize they need help from their families, but they fear the loss of independence that comes with admitting it.

Balancing Data and Patients’ Rights

So, how do we balance the useful application of data and the autonomy, dignity, and privacy of the individual? How do we encourage patients to use the tools available to involve their families in their care? How do we turn disincentives (patient denial, fear of the loss of their families’ respect) to healthy incentives (clarity, connectedness, engagement)? For starters, healthcare professionals and consumers alike must carefully consider which aspects of our health (via data) to share. At the same time, whatever our relationship to the patient, we need to be sensitive to preserving independence and maintaining some sense of privacy. These issues are not insurmountable obstacles. Indeed, in enabling the patient’s ecosystem, the people who care about the patient (the spouse, the adult child or the parent), may be one of the largest untapped resources available.

Altering the approach to apps and healthcare services from patient engagement to family empowerment is a subtle but important switch. Such a development will need to be a combination of technology, process, and choice—where one patient sees an opportunity to stay well, another person may view it as a violation of privacy. It will fall to the medical community (providers, vendors, and payers) to understand and explain the risks and benefits of the various options to patients and their families.

If “it takes a village” to be well, so be it.

When it comes to the health care of a frail older person, families really need a good personal health record (PHR) system. So I am once again preparing to take a look at what’s available, in hopes of finding something that I can more confidently recommend to the families I work with. (To see what medical info I urge families to track, see this Geriatrics for Caregivers post.)

I have — yet again — met a family with reams of paper health records. On one hand, they’ve done very well: at our first visit they were able to show me labs, MRI results, and even some specialty consultations from last summer. They even had a hospital discharge summary, although unfortunately not the one from the most recent hospitalization.

And they’d taken steps to digitally organize, having scanned several key items, as well as created an online space providing shared access to their parent’s information.

So this is better than the situation I often encounter, which is that an elderly person has seen multiple outpatient doctors, has been hospitalized in a few different facilities, and no one has a copy of anything handy. (See why new elderly patients are a killer in primary care? If there is no data you fly blind, if there IS data it can take hours to review it.)

Still, there are clearly many ways a little well-designed technology could improve things for this family – and for the doctors trying to help them.

Here are the problems we have right now:

• Hard to search the whole pile, whether on paper or via the family’s online repository of  PDFs. These were not OCRed and searchable until I manually converted them with my own PDF editor,  after which I had to upload them to the patient’s chart in my EMR. Now each file is text searchable (for me), but the pile still is not.

• Cannot trend the labs. Figuring out what has happened to this patient’s key lab values over the past year has been very labor-intensive. This remains a problem once the lab data is uploaded to my EMR, because it’s still in PDFs which have to be looked at one at a time. Being the nerdy doc that I am, I’ve spent a fair bit of time creating a note that summarizes the key lab data over time. Ugh. Better than nothing but a far cry from being able to graph and trend the patient’s labs as needed.

• Takes ongoing time and effort to get records from the hospitals and other involved doctors. Kudos to this family for being diligent and persistent in asking for copies of everything they can. But wow, it’s a lot of effort for them, and I can tell you that in my practice so far, I’ve generally had to expend a fair amount of energy repeatedly asking for information from other providers. (And then I’ve had to try to organize all this info which comes in as scanned images via fax. Oy!)

We have other challenges too, like how to coordinate care with the assisted living facility and home health agency (don’t get me started), or how to keep track of the elderly person’s pulse and blood pressure (not so easy unless the elderly person is living with highly motivated family members, or has a paid home aide who is good at communicating and at taking directions).

But for this post, let’s stick with the issue of a good personal health record, robust enough for the volume and complexity of records associated with a declining elderly parent.

Personal Health Record features I’m looking for

Here are some of the features I’m looking for in a secure online personal health record (PHR) to recommend to families of elders.

Note: Right now I’m prioritizing a tool that enables families to keep and organize medical information, so as to help clinicians effectively help their elderly loved ones. (Wasn’t this the original purpose of the VA’s Blue Button?) I’m not looking for something that will keep track of a person’s steps walked for the past 5 years.

Key features wanted:

• Easy to import information. The easier, the more likely families will do it. Which means, the more likely they will have useful information handy when the elderly person needs to see a new doctor.
  • Can you email/fax into the PHR? This might make it easy for medical offices to send the info, as fax remains a very common communication mode in health offices.
  • Can it accept info via BlueButton, or BlueButton+? I have yet to meet a family that has retrieved information via Blue Button but can see this becoming more common. Although, having just looked at a Continuity of Care Document created by a PCP’s EMR, I can tell you that it felt nearly useless to me. No lab results. No listing of recent hospitalizations, or even recent clinic visits. No date on the meds or even the EKG listed. Sheesh.
  • Does it allow the patient/family to send a request to providers, and does it log those requests? Does it have any kind of features that facilitate the requesting? Requesting info from providers is a pain. Features that make this easier (by generating the HIPAA release, for instance, and making it easy to send) are sorely needed.
    • My own EMR, MD-HQ, has a nice feature that allows me to signal when I’ve received the results for a certain lab I’ve ordered. This is a way of closing the loop, and I’ve often wished for similar loop-closing support when I request records from other providers.
  • Example of bad usability: Just looked at Healthvault, and to enter lab results, you have to enter each result by hand. Argh. Shouldn’t there be software that will look at a PDF lab report, recognize the important fields, and convert it into the PHR’s structured lab data fields??

• Easy to find information within the PHR. Once you’ve gotten the info into a PHR, you need to be able to find what you are looking for (or what a doctor is asking for) fairly easily.
  • Does it have good search functions? Note that many EMRs — in my own experience — have horrible search functions, so I am really hoping that PHRs will not be modeled on EMRs.
  • Does it have a sensible approach to organizing medical information? I’ll admit that what is “sensible” is open to interpretation. It may be reasonable to adopt an approach similar to a well-designed EMR, so that at least the clinicians can easily navigate, but there may be other good approaches to adopt. I liked many ideas that Graham Walker had in his Blue Button redesign submission.

• Easy to import data from a BP machine or glucometer. Obviously there is a lot of other health data that I occasionally want to follow (e.g. sleep, continence, falls, pain; even steps walked could come in handy). But to begin with, I’d look for something that can capture the internal medicine basics: BP, pulse, weight, and for people with diabetes, blood glucose readings.
  • Can it import BP data from a Bluetooth enabled cuff, or otherwise easily inhale BP data?
  • Can it easily import blood sugar readings?

• Easy to import pharmacy data. Medication management and medication reconciliation is hugely important in geriatrics. Although it’s not a substitute for reconciling a med list with the bottles an older person has (and what actually comes out of the bottles), importing prescriptions from a pharmacy website is much better than asking family caregivers to manually enter them all.
  • Can it import prescriptions from pharmacies?
  • How about importing a discharge medication list from the hospital?

• Easy to export and share health information. Once an older person has a repository of health information, she’ll need the ability to easily send/share data with health providers.
  • Can it fax information to a doctor? It should be easy to send multiple items at once, if needed, and it should log which info was sent to whom, and when. It should be possible to fax or send data
  • Can one give a health provider access to download/copy items? Although I think many doctors would prefer that info be pushed to them (less work than having to browse a patient’s online personal health record), I still think PHRs should allow patients and families to invite a clinician to access the info, especially if the lab data within the PHR can be trended.
  • Can one create and share useful summaries of vitals data? It is hard to review a long string of BP values. A well-designed summary, perhaps graphical, would be better.
  • Is it easy to create a printed summary of selected info? For in-the-moment clinical use of information, it’s hard to beat a good printed summary, and that’s what I’d suggest a family take to the ED. Of course, it’s also nice if in the ED a family is able to help the doctor access the PHR, in order to query for other needed info.

• Easy to maintain a list of all healthcare encounters. I am always trying to figure which clinicians and facilities have seen a patient, in order to know what’s been going on, and who I might need to get information from.
  • Can it easily create a list/timeline of healthcare encounters? Bonus if the timeline connects you to medical data created by each encounter, but then again, a good search function could render this unnecessary. (For more on timelines in PHRs, see this post on how Facebook’s features could be incorporated into a health record.)

There are of course other features that one might want in a PHR product. In a perfect world, the PHR would integrate with some kind of communication and care coordination system, so that all the different providers could stay in touch with the patient/family and with each other. It would also be terrific to have some kind of task/project management support built into such a system, to help everyone keep track of what needs doing next, and prevent problems from falling off the radar.

But in my own experience, it’s very hard for a product to do multiple things well. Heck, it’s hard to find a product that does just one moderately complicated thing well. So for now, I am prioritizing the functions of obtaining, organizing, maintaining, and sharing of personal health information.

In Search of Real Feedback on Existing PHRs

Now that I’ve told you what I’m hoping to find, who can give me some useful information and feedback regarding the now available personal health records.

I would really like to have something that I can recommend to families. To date, I’ve not worked with any families using a digital personal health record. Even the geriatric care managers I work with seem to not be using a modern PHR. (Surprising in a way, but when you consider the overall tech-conservatism of healthcare, not so surprising.)

So far, the main candidates I’m aware of are Healthvault and CareSync. I also know of MyKinergy, which combines a health data repository with a care coordination platform.

I have briefly tinkered with Healthvault, and it seems labor-intensive to enter data, unless you are using one of the many apps/devices that it’s compatible with.

Does anyone have personal experience to share on using a personal health record for an older adult? Has anyone put any of the products above through its paces?

Any suggestions on what I can recommend to the families I work with?

Leslie Kernisan, MD MPH, is a practicing geriatrician, cautious techno-optimist, and enthusiastic caregiver educator. She hopes to someday be surrounded by cool tools and innovations that will make great geriatric care totally doable for all, especially primary care providers and family caregivers. She is a regular THCB contributor, and blogs at Geritech.org and at drkernisan.net.

I recently attended the flagship Health 2.0 conference for the first time.

To avoid driving in traffic, I commuted via Caltrain, and while commuting, I read Katy Butler’s book “Knocking on Heaven’s Door.”

Brief synopsis: healthy active well-educated older parents, father suddenly suffers serious stroke, goes on to live another six years of progressive decline and dementia, life likely extended by cardiologist putting in pacemaker, spouse and daughter struggle with caregiving and perversities of healthcare system, how can we do better? See original NYT magazine article here.

(Although the book is subtitled “The Path to a Better Way of Death,” it’s definitely not just about dying. It’s about the fuzzy years leading up to dying, which generally don’t feel like a definite end-of-life situation to the families and clinicians involved.)

The contrast between the world in the book — an eloquent description of the health, life, and healthcare struggles that most older adults eventually endure — and the world of Health 2.0’s innovations and solutions was a bit striking.

I found myself walking around the conference, thinking “How would this help a family like the Butlers? How would this help their clinicians better meet their needs?”

The answer, generally, was unclear. At Health 2.0, as at many digital health events, there is a strong bias toward things like wellness, healthy lifestyles, prevention, big data analytics, and making patients the CEOs of their own health.

Oh and, there was also the Nokia XPrize Sensing Challenge, because making biochemical diagnostics cheap, mobile, and available to consumers is not only going to change the world, but according to the XPrize rep I spoke to, it will solve many of the problems I currently have in caring for frail elders and their families.

(In truth it would be nice if I could check certain labs easily during a housecall, and the global health implications are huge. But enabling more biochemical measurements on my aging patients is not super high on my priority list.)

Don’t get me wrong. There was a lot of cool stuff to see at Health 2.0; a lot of very smart people are creating remarkable technologies and tools related to healthcare. The energy, creativity, and sense of exciting possibility at a gathering like this is truly impressive.

And yet, most of the time I couldn’t shake the feeling that all this innovation seemed unlikely to result in what our country desperately needs, which is more compassionate and effective healthcare for Medicare patients and their caregivers.

The need to improve healthcare is particularly urgent for those seniors who have 3+ chronic diseases, or have developed cognitive and/or physical disabilities, since health issues seriously impact the daily lives of these patients and their caregivers. And of course, these patients are where most of the healthcare spending goes.

So here we have a group that uses healthcare a lot, and their problems are the ones who challenge front-line clinicians, healthcare administrators, and payors the most. And we love these people: they are our parents, grandparents, and older loved ones. Many of us are even taking care of them, sometimes to the detriment of our own health.

Knock knock. Who is listening? Where is the disruptive innovation we need to help elders, caregivers, and their clinicians?

Real impediments to the Health 2.0 Revolution

“Ready to Revolutionize Healthcare?” asks the Health 2.0 homepage.

Yes, I’m ready. But we’ve got a ways to go before these revolutionary tools can actually revolutionize the average older person’s experience with healthcare.

Why? Two key reasons come to mind.

1. Most solutions not designed with the Butlers in mind. As best I can tell, most innovators don’t have the situation of the Butlers in mind when they design their healthcare solutions. They neither understand the situation from the point of view of the Butlers themselves, nor do they understand the situation from the perspective of the front-line clinicians who could and should do better.

For instance, did the Butlers need games to maintain healthy behaviors and keep Mr. Butler walking and exercising after his stroke? Did they need for all interventions to be considered in light of “Healthspan” rather than “lifespan”?

(What is Healthspan for a slowly declining person with dementia and incontinence anyway? We geriatricians think of improving function, wellbeing, quality of life. And most importantly, of prioritizing the issues because you can’t possibly address them all so go with a combination of what matters most to the patient and what seems most feasible.)

And did the clinicians involved need predictive analytics to help them identify when Mr. Butler was at risk getting worse on some axis that the population health management gurus are worried about?

Which of these innovations will help patients, caregivers, and front-line clinicians establish an effective collaboration on mutually agreed-upon goals, and tailor healthcare to the patient’s situation and needs? How to convert population level processes regarding outcomes and cost-containment into real improvements in the healthcare experience of most elderly patients?

Finally, Medicare is the 600 pound gorilla in healthcare, both as a payer and as what most healthcare providers spend most of their time serving. You want to change healthcare? Change how we care for seniors. (And I don’t mean the healthy ones over-represented at AARP.)

2. Too many solutions to choose from. If you are a patient or caregiver, and decide to consider a new approach to weight loss, or timed toileting, or tracking a symptom: the number of approaches you could try – whether tech enhanced or no — is overwhelming. Especially if you research online.

If you are an individual clinician — or a smaller practice — and would like to consider a new and improved way of doing things: the choices are overwhelming. (A lot of primary care is provided by small practices; there’s obviously a trend towards consolidating but also some backlash.)

Now of course, big organizations have more resources with which to choose solutions for their providers, and big payers can choose solutions for individual patients and families. But unfortunately, when tools aren’t chosen by those who use them, users tend to end up with crummy user experiences.

There is probably an innovative way to work around this and make it possible for end-users to more easily find tools that are a good fit for them. But until those innovations become widely available, I think many in the trenches — patients, caregivers, and clinicians — may find that supposedly helpful innovations are actually not so helpful…a frustrating state of affairs when one is overwhelmed with the challenges of helping an aging adult in declining health.

Islands of relevance at Health 2.0

At an event as big as Health 2.0, there are of course pockets of activity relevant to the care of geriatric patients. There was a session on tools to help family caregivers (which covered two care coordination tools and two sensor/alert type tools) and another on nifty tech to help patients take their meds.

And of course, there was the justifiably popular Unmentionables panel, led by Eliza Corporation’s Alex Drane, which highlighted pervasive issues that affect health but that we tend to not talk about much. These include financial stress, relationship stress, and caregiving. (Good recap of the panel at Healthpopuli.com, and I LOVE that caregiving is high up on this list.)

Words to keep in mind

Alex reminded the Health 2.0 crowd that when it comes to helping with health, we must meet people where they are at. “Health is life; care, completely; empathy absolutely.”

As for me, I found myself thinking of a quote from Larry Weed and “Medicine in Denial.”

“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.”

Similarly, for those who evangelize digital health, and believe that new technologies will revolutionize healthcare, I would say:

The religion of healthcare should not be feats of technology. The religion of healthcare should be to help solve the problems of patients and caregivers, and the compassion involved in the very act of care.

And I’d also recommend they read “Knocking on Heaven’s Door,” or something similar, while attending exciting conferences and planning to revolutionize healthcare.

Leslie Kernisan, MD MPH, is a practicing geriatrician, cautious techno-optimist, and enthusiastic caregiver educator. She hopes to someday be surrounded by cool tools and innovations that will make great geriatric care totally doable for all, especially primary care providers and family caregivers. She is a regular THCB contributor, and blogs at Geritech.org and at drkernisan.net.

What does it mean when an app wins a major foundation’s developer challenge, and then isn’t updated for two and a half years?

Today, as I was doing a little background research on task management apps for caregivers, I came across a 2012 post listing Pain Care as a handy app for caregivers.

Pain is certainly something that comes up a lot when it comes to geriatrics and supporting caregivers, so I decided to learn a little more about this app.

“The Pain Care app won the “Project HealthDesign” challenge by the Robert Wood Johnson Foundation and California HealthCare Foundation,” reads the descriptive text in the Google Play Store.

Well, well, well! RWJF and CHCF are big respectable players in my world, so I was impressed.

But then as I looked at the user reviews, I noticed something odd. Namely, that the most recent one seems to be from April 2012, which is like 2-3 generations ago when it comes to apps.

And furthermore, the app itself was last updated in February 2011. This is like a lifetime ago when it comes to apps.

I decided to download the app and give it a whirl. It’s ok. Seems to be an app for journaling and documenting pain episodes, along with associated triggers. Really looks like something developed by doctors: one of the options for describing the type of pain is “lancinating,” and in a list of “side-effects” (side effects of what? the pain medication one may have just taken?) there is the option to check “sexual dysfunction.” Or you could check “Difficulty with breathing.” (In case you just overdosed on your opiates, perhaps.)

The app does connect to a browser-based account where I was able to view a summary of the pain episode I’d documented. It looked like something that one should print and give to a doctor, and in truth, it would probably be helpful.

Setting snarky comments about the vocabulary aside: this app actually looks like a good start for a pain journal. But it needs improvement and refining, in order to improve usability and quality. Also, although I don’t know much about app development and maintenance, I assume that apps should be periodically upgraded to maintain good performance as the operating systems of iPhones and Android phones evolve.

What does it mean, that this app was blessed by RWJF but then has been left to founder? A quick look at the developer’s news feed reveals that the app maker, Ringful Health, has racked up an impressive array of research contracts and prestigious partnerships: NIH, CMS, Consumer Reports.

Will these alliances lead to more lasting (read: supported and improved in an ongoing fashion) products and apps that can benefit patients and caregivers? What is the measure of a successful app, from the perspective of public health authorities, and of foundations?

Clearly, this is partly about issues related to business case and funding. To maintain an app, you need money. (If you get money from active users, then you definitely need to work on keeping them happy.)

Who will pay to maintain the apps that foundations, government agencies, and public-interest agencies help start?

And what does happen to most of these apps and tech projects that win foundation awards? Would be interesting to learn more about the natural history of such apps…

Leslie Kernisan, MD, MPH, has been practicing geriatrics since 2006, and is board-certified in Internal Medicine and in Geriatric Medicine. She is a regular THCB contributor, and blogs at GeriTech.

Why aren’t people in hospitals more attentive to the needs of patients?

In a recent post, Dr. Ashish Jha raises this issue as he relates his own story of coming to an ED with a very painful dislocated shoulder. Unsurprisingly, prompt treatment of his pain was deferred while staff diligently completed registration, sent him for an xray, and waited for a physician to see him.

On the bike path where Jha took his initial tumble, people went out of their way to respond to his injury with attention and concern. But as he lay moaning on a gurney in the hospital corridors, waiting for an xray and not yet treated for pain, people avoided his eyes and even walked by a little faster.

What gives? Why aren’t people in the hospital more empathetic and attentive? Is this a “wonderful people, bad system” issue?

In reflecting on his experience, Jha remarks that people seem to leave their humanity at the door when they arrive at the hospital for work, and posits that we get desensitized to suffering. He notes that some workers were able to “break out of that trap,” and responded to him more empathetically when he directly solicited their help and attention.

“It is the job of healthcare leaders to create a culture where we retain our humanity despite the constant exposure to patients who are suffering,” writes Jha.

Culture change is necessary but not sufficient

Culture is important. Yes I’ll admit that I’m usually a bit skeptical when I hear of a plan to tackle a problem through culture change. In my own experience, this has consisted of leaders trying to “create culture” by describing to front-line staff  what they should be doing, and repeatedly exhorting them to do it. (And maybe giving out gold stars to those who do it.)

This, of course, is never enough. Talking the talk does not mean people start to walk the walk, especially if the walk involves a slog uphill rather than an easier stroll down a path of lesser resistance.

If we – whether healthcare leaders or  just concerned citizens who want to see healthcare improve – really want healthcare workers to demonstrate more compassion and empathy while on the job, then here is what we need to do:

1. We should take seriously the task of understanding what might be interfering with this compassion and engagement. This means not only studying workflow, but also the behavioral psychology of individuals as well as groups.
2. We should then be serious about creating the conditions that would allow regular human beings to reliably produce the desired behaviors.

Why it can be hard to help people in the hospital

What interferes with showing compassion and engagement? In reading Jha’s piece, I reflected on my own hospital days. Here are the obstacles that I remember, and the impact on me.

Difficulty meeting the needs of patients and families. I remember constantly feeling that people needed more from me than I could provide. Sometimes they needed to talk for more time than I felt I had available. Or they needed a service or other form of assistance that I wasn’t sure how to get for them.

Especially frustrating was when patients needed something like pain medication on short notice. I have been that doctor very concerned about a patient’s terrible pain. Unfortunately, I discovered that my power to help was quite limited by hospital logistics and workflow: although I could order pain meds right away, the patient could almost never get it quickly. After all, the pharmacy still had to dispense the medication, and the nurse had to administer it.

If you are a conscientious person who wants to help (which I think most healthcare workers are), it’s very stressful to recognize a person’s need and not be able to address it.

Hence, as a coping mechanism, my guess is that many people working in hospitals adapt by learning to “not see” those needs that they feel they can’t address promptly and properly. (Perhaps we might consider this a form of learned helplessness?)

That ED doc that Jha praises for addressing his shoulder quickly? He sounds like a good guy, but it also helps that he had the skills and ability to do something right then and there.

Frustration with workflows and workplace tools. It’s no secret that hospitals and clinics often present a “high-friction” environment for front-line staff. Back when I worked in the hospital, every day involved coping with inefficient workflows that generated various levels of annoyance. There was redundant paperwork. There were computers requiring multiple sign-ins, or repeated sign-ins. There were tasks that took three steps when they really could’ve been redesigned to take one or two.

Along with the expected hassles, one also had to contend with frequent malfunctions in whatever system you were trying to use. A printer out of paper. A computer that mysteriously can’t be logged into. A shortage of staff in a certain department, such that a routine inquiry ends up taking twice as long as usual.

To be fair to hospitals, designing friction-free workflows for clinical staff poses a huge challenge, given the complexity of the work involved and the diverse needs that hospital administrators need to consider. And the nature of life is such that often things do not work as expected.

Still, it all added up to a fair drain on one’s energy and attention, and made it harder to provide patients and families with attention when they needed help.

Inadequate levels and reserves of energy. Compassionately interfacing with patients takes energy, especially if pain or emotionally intense issues are at hand. If one is worn out by earlier encounters, or by a long workday, it becomes much harder to muster the energy to engage with those who need us.

And of course the energy one can bring on any given day is powerfully influenced by the overall balance of exertion and regeneration that one experiences over weeks and months. Long workdays stacked back-to-back (as experienced by many hospitalists) take their toll. Young children at home, or other significant obligations outside the hospital, can also reduce one’s energy at work.

On the flip side, certain activities help people regenerate and restore their energy. Adequate sleep, exercise, and close relationships with friends and family are sustaining staples that are needed by all. Plus everyone tends to have some favorite soul-nurturing activities that help recharge the batteries.

For physicians in particular, the problem is that residency tends to leave people with little time to recharge. We form our habits as doctors during a time of chronic stress and fatigue.

And even after residency, many physicians end up with chronically intense work-schedules. What effect does this have on their ability to be compassionate and responsive to patients and families?

My own experience has been that when I work long hours, it feels much harder to give people the support they want. I still try to do it but I suspect I do it less well. I also know that when I’m tired I make an extra effort with patients but then have much less patience with other members of the healthcare team. (And then when I come home I’m short-tempered and crabby with husband and kids; not necessarily a problem for hospital and patients but concerning to me.)

Enabling humans to show humanity

Cultural expectations within institutions and groups are powerful. We do take our cues from peers and leaders. But it’s hard to follow the cues when surrounded by pervasive stressors and obstacles. In fact, it can be demoralizing to be told to do something when your leaders don’t seem to be making enough of effort to enable this doing.

As healthcare leaders take on the important task of making hospitals more responsive to the needs of patients and families, I hope they’ll consider the following:

• People don’t like being faced with situations that they can’t fix, or that they feel will be a huge time/energy suck to fix.
  • Make it easier for them to do the right thing.
  • Recognize when you are asking them to do something that is a big time/energy suck.  Try to give them more time. Realize that they’ll have less energy afterward for efforts that are cognitively or emotionally demanding.
  • Provide communication and empathy training. Without explicit training, people often don’t realize that patients and families appreciate sympathy and attention, even when you can’t solve the exact problem at hand.
  • Frictions in the workplace add up to material stress and depletion of energy.
    • Reducing these frictions can enable workers to be more responsive to the needs of patients (and colleagues).
    • Adapting to changes in the workplace — such a new computer system or workflow — does create a drain on staff’s energy and attention. Ideally, this is temporary but poorly designed changes often create permanent energy drains.

Be mindful of the overall energy and stress levels of your workers.

• Workers who are already experiencing chronic stress and fatigue will have difficulty becoming more attentive to patients’ needs.

Now, if you told me that healthcare leaders already know all this, I wouldn’t be surprised. If you’re in a leadership position, it’s really part of your job to learn about managing human capital.

The trouble is that for the leaders of a hospital, addressing the obstacles that I experienced in the hospital feels costly to them. It takes time, energy, and money to reduce workplace frictions. And managers are generally very reluctant to reduce a person’s workload in order to free up cognitive and emotional energy so that the worker can then be more responsive to suffering patients, or even adapt to new technology for that matter.

In principle, these investments in nurturing one’s human capital should pay off down the line: more satisfied patients, less worker absenteeism, better teamwork among colleagues, and possibly even fewer hospital errors and better health outcomes among patients and staff.Will healthcare leaders find a way to walk their own uphill path, and really make it possible for their front-line staff to do better work? I hope so.

Leslie Kernisan, MD, MPH, has been practicing geriatrics since 2006, and is board-certified in Internal Medicine and in Geriatric Medicine. She is a regular THCB contributor, and blogs at GeriTech.

Have I gotten to the end of the beginning in developing tools that help people take care of themselves?

With the recent release of Unfrazzle, an app for caregivers, I believe I have. Unfrazzle builds upon the learnings of Zume Life and Tonic, earlier apps I developed. There were key lessons from hundreds of users and family caregivers that influenced Unfrazzle’s product design, driving it in directions very different from and hopefully much more useful than what you might expect.

These key lessons, explored in more detail below, I group into three themes:

For those unfamiliar with Unfrazzle, here’s a brief description:It is an iPhone app (Android coming soon) that helps users remember and keep track of anything they do to take care of themselves and their family (parents, friends, children, pets), and to stay in-sync with other caregivers in their family. Unfrazzle is a Design-It-Yourself app — it essentially provides a platform, a framework that the user then shapes to meet his own ever-changing needs.

If that sounds clear as mud, try this: take your favorite pill reminder app, and imagine that you can change all the screens and forms to accommodate any health & wellness activity (not just pills but also other things such as exercises, moods, symptoms, observations, and chores). Then imagine that you can share any of your data with others also using the app, so that you can see each other’s entries. Imagine you can even allow others to make entries for you, then you’ve got the gist of Unfrazzle.

Care Regimens Constantly Vary

From the start,  beginning with Zume Life, our focus has been on making it easier for people to remember and track their health regimens. We began by targeting a simple, logistical problem — in our busy lives it is easy to forget little details.

Our idea was that adherence would be improved if we had a memory aid.

Our tool had to be somewhat flexible, because we took the approach that we could not possibly know everything a person might be doing for his health. For example, allowing a person to include their supplements in their list of medications, and not just their prescriptions.

We appreciated what Sir William Osler once said, “you can have lice and fleas at the same time.” We decided to focus on health activities in general rather than the specifics of a condition such as asthma or diabetes.  We had categories: medications, biometrics, observations, exercise and diet. And we designed appropriate user interfaces for each.

Alas, we immediately learned from our users that things did not always fit nicely into categories. Where exactly does one put “breathing exercise”? Is it a medication? An exercise?

Is the ability to comfortably hold your breath for thirty seconds a biometric? Or  is it an observation? Eventually we started to wonder why things needed to be assigned to a category anyway.

Also, we very surprised to see what people included in their health activities.  The most shocking was  “Shoveling manure”  included in one early user’s regimen. We told the user that if this was an editorial comment on the value of our product, she didn’t need to continue with the pilot. But, it turned out, she lives on a farm where cleaning out the horse stables is very hard work. Very reasonably, she was keeping track of manure shoveling as part of her exercise regimen!

We’ve come to learn that the range of care activities varies widely from the mundane, drinking herbal tea, to the fantastic, scheduled calls with faith-healers. We learned that accommodating such variety is a must, as hardly anyone had a simple “standard” regimen. Our experience matches what an anthropologist from San Jose State, J.A. English-Lueck documents in her book “Being and Well-Being: Health and the Working Bodies of Silicon Valley”. She terms it “deep medical diversity”.

For the very first Zume Life pilot we were inputting user’s regimens ourselves, which of course proved untenable.

All of our early users had chronic health issues, but we quickly came to learn that “chronic” does not mean “stable”. Things come and go, medications and regimens change. The chronically ill are also not excused from common problems — they can still twist their ankles and have to take care of that as well.

The constant user changes were a hassle for us to keep up with, and users quite reasonably asked why they couldn’t just do it themselves.

Over the years, as I broadened my focus from self-care to family caregiving, the range of care tasks that came into view greatly expanded. Users need help remembering and keeping track of all sorts of life management issues — such as cooking, cleaning, companionship, appointments, and transportation — not just medical activities.

The above lessons learned about real-world regimes led to:

• Unfrazzle must be flexible enough to accommodate people’s actual regimens, rather than be limited to some pre-defined set of academically defined regimens.
• Users must be able to input and change their own regimes. Doing it for them can be disempowering and often impractical.

We Live in a Network of Mutual Caregiving

An estimated 65 million adults in the U.S. are family caregivers, providing unpaid care to sick, disabled or aging family members. A big number to be sure, but in some ways an undercount. Many more people are involved in the wellbeing of others — spouses, children, friends, and pets — and their responsibilities include remembering and keeping track of care activities for these family members.

People often used our “self-care” tools (Zume Life and Tonic) for the care of others. Sometimes this was minor, such as adding a pet cat’s monthly flea medicine to the user’s own regimen. Other times the other person was core to the tool’s usage, such as a father using Tonic to manage his daughter’s cystic fibrosis treatment.

We came to learn that a caregiver never has just one care “recipient” — at the very least the caregiver is taking care of himself as well as the other person. From research conducted to map family care networks, we came to see that many people are often involved, and that caregiving is often mutual (people care for each other). Each person may be involved in the care of several people (and pets), and in turn each person may be taken care of by several people.

It’s a complex and shifting web, not a simple caregiver–care recipient dyad.

Caregivers are often involved only on an “as needed” basis. They step in to help when asked, when there’s a crisis. There’s a hidden problem here, though. During the down times, when they’re not providing care, they worry a great deal about whether they should be doing something. And it is the “not knowing” — not knowing if an aging mother has taken her medications, not knowing if the mood of a friend going through chemo is high or low, not knowing whether a husband has gone for his walk or not — that causes perhaps the most angst.

Caregivers want to know what is going on.  From a product developer perspective, though, it is even more important for users to know they have easy and rapid access to information whenever they choose to look. They want reassurance or confidence that when they next worry about what’s going on, they can quickly find out.

For most of our users, health professionals were not involved in the use of these tools. The first version of Zume Life included extensive provider functionality (dashboard, escalating alerts, charts, etc.). But providers were uncomfortable with the flexibility the tool allowed users, and were also just slow in roll-out. To get quicker user feedback, we opened the solution to the general public, and were overwhelmed by demand. We discovered that people want relief now, and are quite willing to get it without doctor involvement. So, we pivoted, and never looked back.

There were some who involved their doctors directly. One early Zume Life user shared her medication and pain tracking data with her doctor (using paper), and together they experimented with medication timing and dosage to lower her pain episodes significantly. A couple using Tonic to track the condition of their newborn son shared the results with his care team (by passing around their iPhone), and were reassured that he was progressing well. Such rudimentary data sharing — no integration with EMRs, no fancy charts — still proved to be very valuable, and much better than no data or vague recollections.

Understanding these care networks has led to these conclusions:

Living is Much More Important Than Adherence

As soon as we started interviewing Zume Life users and analyzing their product usage patterns, a contradiction became apparent.  People were highly attached to the tool, so much so they didn’t want to give it back, however they were also non-adherent, they weren’t making entries on a regular basis.

This conundrum has held true through the various versions of Zume Life, Tonic and Unfrazzle. Trying to understand this has led to three key lessons:

First, people care more about doing than tracking. While they often find value in getting the reminders, they don’t always see a need to confirm their actions by checking a box or by making an entry of a “normal” measurement. People are more likely to make entries when their health is less-than-normal, with the expectation that tighter adherence and more conscious observations will speed recovery. So, while analysis of users’ entered data implied non-adherence to the tool and the regimen, the users were actually using the tools and being adherent to the extent they felt appropriate.

Second, using the tool helps improve the user’s ability to do without the tool. Zume Life and Tonic users reported a significant lowering of anxiety as one of the results of using those tools. They were much more relaxed knowing the tool would take care of remembering tasks and keeping track of whether they were completed of not. It’s much like writing down your grocery list so you don’t stress about whether you’ve remembered to buy everything.

This relief was expected. Mental relief is the key benefit felt by users. What was unexpected was that users found themselves better able to remember that it was time to do something even before the reminder went off. They could even turn off the reminders, and be quite adherent without the stress they’d previously felt. When the regimen changed, and the user had to get used to a new schedule,  they would turn the reminders back on. Basically, it became a tool to always have around, and to use whenever necessary.

Third, and most important, adherence is a much lower priority than living life. Users would often choose to be non-adherent or to have less-than-perfect adherence. We could understand occasional non-adherence, that people had other responsibilities (jobs, family, social obligations, etc.) and they prioritized as best as they could in the moment.

More difficult to understand were users who had very serious conditions and who were clearly dedicated to taking good care of themselves, but who would also turn off their reminders, sometimes for weeks, and muddle through. One user, for whom even good days involve a few hours of self-care, explained that when her health was reasonably steady, she devoted all her energies to her children, family and profession. When her health took one of its frequent downturns, she again devoted herself to recovery, and relied on the tool to be very adherent.

Quite simply, she prioritizes living over health management as much as possible.

These three lessons have in turn led us to design Unfrazzle in the following ways:

• A key goal is to make it easier for users to do what they want to do, to allow them to have more time and energy for whatever else is important in their lives.
• The user knows better than us when to be adherent, and so Unfrazzle does nothing to “motivate” or “nag” them to be adherent. We even removed the subtle color feedback about an entry being “late” that was in earlier versions.
• We don’t judge the value of Unfrazzle by how often people use it. Instead, we judge the value by noting to what extent Unfrazzle becomes part of the user’s basic toolkit, something they just always have with them.

The Beginning of an Essential Tool

Heeding all the lessons explored above has led us to design Unfrazzle with points-of-view often quite different than traditional “adherence” apps:

• It is about the family, not health professionals, though they could also benefit.
• It is about the caregiver, not the care recipient.
• It is about everyday, mundane caregiving, not crises, though those will also be more manageable.
• It is about all health and wellness activities, not just medications or specific disease issues.
• It is all about making it easier to do what you want to do, not about adherence.

Moleskine, the famous maker of notebooks (the old-fashioned paper kind), recently introduced a line of specialized notebooks: a tea journal, a dog journal, a film journal, etc. Each has pages designed for that particular topic. These are very nice additions, but they don’t replace the basic, blank notebook which can be used to write about anything, including tea, dogs, and films. The blank notebook is the essential tool. The specialized ones are for occasional use.

After many years of iterating and improving through many earlier versions, I think Unfrazzle finally has the basic functionality required to be an essential tool, helping caregivers with anything they have to deal with. Like Henry Ford’s Model-T, this should have widespread usefulness while also opening the door to enormous improvements to come.

It is the end of the beginning.

Rajiv Mehta is the CEO of Unfrazzle, on the board of the Family Caregiver Alliance, and co-organizer of the Quantified Self.

What user personas do healthcare technology designers and entrepreneurs have in mind as they create their products? And how often is it the family caregiver of an elderly person?

This is the question I found myself mulling over as I wandered around the Health Refactored conference recently, surrounded by developers, designers, and entrepreneurs.

The issue particularly popped into my head when I decided to try Microsoft Healthvault after listening to Microsoft’s Sean Nolan give a very good keynote on the perils of pilots and the praises of platforms (such as HealthVault).

As some know, I’ve been in search of apps and services that can help older adults and their families keep track of lengthy and frequently-changing medication lists. For years now I’ve been urging family caregivers to maintain some kind of online list of medications, but so far I haven’t found a specific app or service to recommend.

Why? Because they all require way too much effort to enter long medication lists. Which means they are hardly usable for my patients’ families.

Could HealthVault do better? Having heard generally promising things about the service these past several months, I signed up and decided to pretend I was the daughter of one of my elderly patients, who had finally decided to take Dr. Kernisan’s advice and find some online way to keep track of Mom’s 15 medications.

Sigh. It’s nice and easy to sign up for HealthVault. However, it’s not so easy to add 15 medications into the system. When I click the “+” sign next to current medications, I am offered a pop-up box with several fields to complete.

I can’t help but think that when HealthVault’s UX team worked on this, they must not have considered the case of the 58 year old woman trying to enter the lengthy med list for her 85 year old mother.

This is too bad, because if they had considered the caregiver of an older adult, they surely could’ve come up with some better options. For example, consider what happens when one signs up for a new social media platform these days. Usually, the service offers to connect to one’s email account or contact list to conveniently import useful information.

Similarly, if HealthVault had designed with lengthy medication lists in mind, they might have immediately offered the option to import medications from one of their major pharmacy partners, like CVS or Walgreens. (Oh wait. Looks like Walgreens and HealthVault broke up recently. Bummer.)

Unfortunately, as far as I can tell, most companies don’t seem to have considered usability with the needs of an older medically complex patient in mind, unless they are specifically focused on the aging/caregiving market. (And even then, I’m not always sure the design can stand up to the medical complexity of these patients.)

How to help healthcare tech companies design for the older medically complex patient

The number one health services problem facing the nation is how to provide compassionate effective healthcare to the growing Medicare population, at a cost we can sustain.

Healthcare technologies companies often gravitate towards wellness, prevention, and serving a relatively young, tech-savvy population. But if they really want to serve the needs of society, they need to help those patients who are the chronic high utilizers: the elderly.

How to design for these older patients, and the family caregivers who are often their proxies in healthcare?

Developers and designers would need to start by better understanding how usable their product feels when used on behalf of someone with multiple conditions and multiple medications.

(Of course, in an ideal world the product would be designed to be usable by the elderly themselves, but let’s start with the simpler scenario – and currently relatively common scenario – in which young and middle-aged adults use healthcare technology on behalf of an older loved one.)

Here are three things that designers of healthcare tech tools should do:

• Create a “family caregiver for a medically complex older adult” user persona. In my experience, family caregivers are pretty stressed and overwhelmed by the substantial job of managing an older person’s healthcare. They need help, and that help needs to be easy to use. Hence, I’d be surprised to see them adopt any product that requires labor-intensive data entry.

• Create or obtain a sample medical data file for a medically complex older person. I described a medically complex patient last fall when I blogged about the Blue Button redesign challenge. Obviously, design and usability will be tested in very different ways if a patient has fifteen chronic conditions instead of just two, or eighteen medications instead of just three.

• Involve caregivers of medically complex elders in the user testing of your product. See what happens when caregivers try to use the product on behalf of an elderly person.

Of the three ideas above, the second will probably be the most difficult for companies to implement. That’s because a realistic sample data set for a medically complex patient is hard to generate from scratch.

One possible way to tackle this would be for some larger entity governmental or non-profit entity to create this, and then distribute to designers and developers so as to help them serve this critical user demographic.

Can anyone think of a way to encourage medically complex patients to volunteer their de-identified data?

Other ideas on how to encourage developers and designers to create products that work for the caregivers of the elderly?

Leslie Kernisan, MD, MPH, has been practicing geriatrics since 2006, and is board-certified in Internal Medicine and in Geriatric Medicine. She blogs at GeriTech.

Terry is a particularly difficult patient.  She is not hard because of her cancer, which is in remission, nor is there a problem with pain, of which she has little, and Terry is not particularly demanding for the nursing staff.  No the real problem, the challenge, the thing that makes her so difficult is that Terry is married. Terry is married to Dr. P and he is a particularly difficult man.

Terry’s husband loves Terry very much.  He wants her to have the very best care.  Dr. P makes certain that all the doctors know everything that is going on, all the time; he makes sure the nurses are on top of every detail; he demands the best from the all the hospital staff.  In fact, Dr. P works so hard to control Terry’s care, to stay on top of her case, to monitor every moment, it is nearly impossible to take care of Terry.

There are many challenges for doctors taking care of other doctors or their families, or, in reverse, there are many challenges for doctors when they seek care for themselves and their families.  The result of this conflict is often inferior medical care.  Therefore, wanting to honor and help doctors get good quality treatment let us take a moment to review the doctor verses doctor verses medical system dilemma.

First, it is hard for doctors to decide where to go for medical care.  If you stay in the same community where you practice you lose some privacy and perhaps even respect in the physician community.  Who do you chose and how do you avoid offending the other physicians you do not use?  If you leave your own area, you lose the convenience and familiarity of getting care close to home.

Next, there is the tendency of physicians treating other physicians to give “special” care.  The problem is that when we give special care, we deviate from training and protocol.  When we deviate, we make mistakes. “Sure Dr Bob, your wife’s chest pain doesn’t sound like much so instead of dealing with the emergency room come by the office after-hours.”  Years of training and experience, which produce professional judgment and wisdom, are thrown out the window to be polite and go that “extra mile.”  The problem is that a mile may be too far.

Physicians and the medical system tend to treat doctors as, well, as doctors.  We expect them to understand issues faster and have a sophisticated interpretation of events.  We talk with them in medical-ease and assume they will cope the same way as when taking care of their own patients.  I have seen physician spouses invited to join MICU rounds involving their loved one.

If a physician’s significant other is ill, there are always issues of guilt.  “I discovered it too late”;  “the medicine was not enough”;  “I was not persistent or was too persistent”;  “I should never have written that script”. This layer of guilt adds to the emotional burden of illness, and can lead to anger, confusion, and complicated grief.  Attempting to assuage their own guilt physicians seize control of their loved one’s care, whether or not they have medical knowledge, with the result that the patient suffers.

The solution to all of these problems is essentially the same, but can be hard for naturally controlling physicians to handle.  The answer is that a physician-patient is a patient, not a physician. A doctor of a loved one is not a doctor at all; they are family.  Just as other patients must adjust to medical care and systems, assuming the “sick role” in order to get the best care, physicians must assume the proper role of patient and family.

Physicians should pick their doctors purely on the grounds of getting the best care; no other measure is proper.  Other doctors and the medical system must treat physicians as patients.  That means we use the same systems, the same protocols and the same approach as we would in any similar case.  It means explaining medical events like you are talking to any layman, as if the doctor has no medical training.  It is reasonable to use basic medical terms and concepts to communicate but to assume that a physician under personal or family medical attack can understand complex health concepts is to risk confusion and a bad outcome.

A doctor’s emotional circuits fry as fast as anyone else and they can rapidly become saturated.  Doctors have seen every bad outcome and will often fear the worst, thus they may over react to minor setbacks. They may even give up when continued care is warranted.  This extra layer of complexity is born out of the doctor’s years of emotional adjustment to disease, which in this situation may be counter productive; it must be anticipated and discussed.  Paradoxically, physicians may be less able to cope with health care and need more support than a patient who has never before set foot in a hospital.

Doctors should not be allowed to take control of the care of loved ones and in reverse should not demand real control, beyond that guaranteed to each patient and family.  Treating physicians must be aware of potential guilt that can lead to controlling behavior and remember that improper control can amplify future guilt.

When a doctor or his family is ill they are patient or loved one.  This is a special role that no one else can fill and is vital.  By helping physician-patients focus on healing and not being responsible for care, we make the chance that they will return to healthy lives that much greater.  For our friends and colleagues there can be no finer honor.

James C. Salwitz, MD is a Medical Oncologist in private practice for 25 years, and a Clinical Professor at Robert Wood Johnson Medical School. He frequently lectures at the Medical School and in the community on topics related to cancer care, Hospice and Palliative Medicine. Dr. Salwitz blogs at Sunrise Rounds in order to help provide an understanding of cancer.