The following column appears today on THCB, in the op-ed pages of the Los Angeles Times and at ProPublica.
Your doctor hands you a prescription for a blood pressure drug. But is it the right one for you?
You’re searching for a new primary care physician or a specialist. Is there a way you can know whether the doctor is more partial to expensive, brand-name drugs than his peers?
Or say you’ve got to find a nursing home for a loved one. Wouldn’t you want to know if the staff doctor regularly prescribes drugs known to be risky for seniors or overuses psychiatric drugs to sedate residents?
For most of us, evaluating a doctor’s prescribing habits is just about impossible. Even doctors themselves have little way of knowing whether their drug choices fall in line with those of their peers.
Once they graduate from medical schools, physicians often have a tough time keeping up with the latest clinical trials and sorting through the hype on new drugs. Seldom are they monitored to see if they are prescribing appropriately — and there isn’t even universal agreement on what good prescribing is.
This dearth of knowledge and insight matters for both patients and doctors. Drugs are complicated. Most come with side effects and risk-benefit calculations. What may work for one person may be absolutely inappropriate, or even harmful, for someone else.
Antipsychotics, for example, are invaluable to treat severe psychiatric conditions. But they are too often used to sedate older patients suffering from dementia — despite a “black-box” warning accompanying the drugs that they increase the risk of death in such patients.
This past week, the NYT New Old Age Blog featured a post about me and my practice. Titled “Walking Away from Medicare,” it describes my decision to opt-out of Medicare and create a different kind of geriatric practice.
It has generated quite a lot of comments: 163 at my latest count. Most of them judge me pretty harshly. It seems that many people feel that I’m doing this for the money. And that I don’t care about society or older people.
Of course, if you know me or if you’ve been reading this blog, then you’ll know that nothing could be further from the truth. My practice is fairly small, in part because my goal in having this practice was to have a way to keep working with patients and families, while having the flexibility to pursue my other professional interests. Since I started the practice, I’ve spent most of my time writing for this blog, learning about the worlds of digital health and healthcare innovation, and thinking about how we can teach geriatrics directly to caregivers.
Even before I launched my geriatric consultation practice, I found myself often pouring over another doctor’s outpatient notes, trying to explain to a patient what the other doctor was doing.
Sometimes these other doctors were specialists to whom I’d referred the patient. But often they were simply clinicians – either previous PCPs or currently involved specialists — whose involvement with the patient predated my own.
Not every patient had questions and concerns about what their other healthcare providers were saying, and doing, but a fair number of them did. And family caregivers, in particular, were often concerned that perhaps their older loved one hadn’t been getting the “right” medical care.
These are, in truth, legitimate concerns patients have. In a busy outpatient setting, doctors often don’t have the time to explain the assessment and plan to a patient and family. And in many cases, the care that clinicians provide may not correspond to best practice guidelines – if applicable to the situation – or to the patient’s preferences and values.
So if you are a concerned patient or family member, and you’re not entirely sure about the medical care you’re getting, what to do?
- Look up the provider’s quality ratings online, through a government, non-profit, or other website?
- Figure that the ACO or payer is on top of it, now that we are moving to pay-for-quality and fee-for-value?
- See what other patients have said about the provider’s care?
- See how many doctors are referring to the provider in question, and assume that if many doctors refer to this clinician, the clinician must be good?
- Look up your medical problems online, and try to determine for yourself whether you’d been getting the right medical care?
- Get a second opinion from another doctor?
My guess is that most patients and families end up trying one – or both – of the last options. In this post, I’ll explain why I’ve come to believe that facilitating second opinions is integral to empowering patients, and to improving the quality of outpatient care.
Why seek a second opinion
I don’t know about you, but when I’ve found myself trying to solve a problem in which I lacked adequate expertise, I’ve turned to a professional for help. (I haven’t had to do this for medical reasons in the past decade, but have done it for issues such as home renovation and website design.)
And in many cases, after meeting with an expert for a while, I’ve then turned to yet another expert to get an additional perspective on the issue at hand.
An 85-year-old woman with moderate Alzheimer’s disease who enjoys walking in her nursing home’s garden with her walker has fallen and broken her hip. An advance directive signed by the patient states a preference for “Comfort Measures Only,” and specifically states that she does not want to be transferred to the hospital. The physician believes that surgery would provide long-term pain relief and the chance to maintain some mobility.
What do you do? How do you reconcile her previously expressed hypothetical wishes in an Advance Directive with what is now a rather unanticipated scenario?
In a paper published recently in JAMA Internal Medicine, Alex Smith, Bernard Lo, and Rebecca Sudore developed a 5-question framework to help physicians and surrogates through the decision making process in time like this. The framework proposes 5 key-questions to untangle these conflicts:
- Is the clinical situation an emergency?
- In view of the patient’s values and goals, how likely will the benefits of the intervention outweigh the burdens?
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.
One of the many challenges I face in my clinical work is keeping track of a patient’s multiple health issues, and staying on top of the plan for each issue.
As you might imagine, if I’m having trouble with this, then the patients and families probably are as well.
After all, I don’t just mean keeping up with the multiple recommendations that we clinicians easily generate during an encounter with an older patient.
I mean ensuring that we all keep up with *everything* on the medical problem list, so that symptoms are adequately managed, chronic diseases get followed up on correctly, appropriate preventive care is provided, and we close the loop on previous concerns raised.
This, I have found, is not so easy to do. In fact, I would say that the current norm is for health issues to frequently fall between the cracks, with only a small minority of PCPs able to consistently keep up with all health issues affecting a medically complex adult.
Do they need a PET scan to confirm the presence or absence of amyloid plaque?
More importantly, would doing such PET scans make meaningful impacts on patients’ health?
Those are the questions that a Medicare expert panel recently considered, and their impression, after carefully reviewing lots of high-quality research, is that we don’t yet have evidence supporting the benefit of using the PET scans. Unsurprisingly, some experts disagree, including a working group convened by the Alzheimer’s Association. This group of experts reviewed the evidence and common clinical scenarios, and concluded that in certain select situations, use of the PET scan would be appropriate. (See their guidelines here.)
As someone who evaluates many memory complaints, I’m certainly interested in Medicare’s inquiry, and in whether they’ll decide to cover the scan. (The NYT’s New Old Age Blog has a nice summary of the debate; a good read if you haven’t seen it yet, esp the comments.)
Also, I blogged last fall about how I thought the new scan could and wouldn’t help clinicians like myself evaluating cognitive complaints, especially in those who likely have early dementia. In particular, I commented on the difficult period of uncertainty that we often go through, as we wait to see if subtle problems progress or not.
Would the PET scan meaningfully help with that period of uncertainty? Hard to say, and it hasn’t yet been tested. I myself think that this period of uncertainty can be pretty hard on families, but measuring this burden is tricky. (Much easier to measure hospitalizations and utilization!)
I also suspect that it’ll be hard to prove benefit from “knowing earlier,” in large part because our healthcare system is currently so poorly equipped to meaningfully help people with a new dementia diagnosis.
Which brings me to the part of this story that has me annoyed.
A little over a year ago, I found myself burning out and realized that my worklife was unsustainable.
I’d been working at an FQHC clinic, and had become the site’s medical director a few months before. I was practicing as a primary care doc, trying to improve our clinical workflows, problem-solving around the new e-prescribing system, helping plan the agency’s transition from paper charts to electronic charts, and working on our housecalls and geriatrics programs.
All of this was supposed to be a 50% position — plus 5% paid time for follow-up — because I had two young children that I wanted to have some time for, and was also working one day/week for a caregiving website (Caring.com).
Needless to say, this job was taking far more than 55% of my time, and seemed to be consuming 110% of my psyche. I very much liked my boss and colleagues, was learning a lot, and felt I was improving care for older adults.
But I was also irritable, stressed out, and had developed chronic insomnia. And clinic sessions were leaving me drained and feeling miserable: try as I might, I couldn’t find a way to provide care to my (and my patients’) satisfaction with the time and resources I had available.
One evening my 3 year old daughter looked at me and asked “Why are you always getting mad and saying no?”
Good question, kiddo.
A few weeks later, I told my boss that I’d be resigning my position in 5 months. And I started trying to reimagine how I might practice geriatrics.
My current clinical practice, which I launched last October, is the result of that reimagining.
“Hey doctor, what do you think about this product/solution/service?”
These days, I look at a lot of websites describing some kind of product or solution related to the healthcare of older adults. Sometimes it’s because I have a clinical problem I’m trying to solve. (Can any of these sleep gadgets provide data — sleep latency, nighttime awakenings, total sleep time — on my elderly patient’s sleep complaints?)
In other cases, it’s because a family caregiver asks me if they should purchase some gizmo or sensor system they heard about. (“Do you think this will help keep my mom safe at home?”)
And increasingly, it’s because an entrepreneur asks me to check out his or her product.
So far, it’s been a bit of a bear to try to check out products. Part of it is that there are often too many choices, and there’s not yet a lot of help sifting through them. (And research has shown that choices create anxiety, decision-fatigue, and dissatisfaction with one’s ultimate pick.)
But even when I’m just considering a single product and trying to decide what to think of it, I find myself a bit stumped by most websites. And let’s face it, if I visit a website and it doesn’t speak to my needs and concerns fairly quickly, I’m going to bail. (Only in exceptional cases will I call or email for more information.)
So I thought it might be interesting to try to articulate what would help me more thoughtfully consider a product or service that is related to the healthcare of older adults.
Not too long ago I had the unique experience of needing the services of the emergency room of a major teaching hospital in New York City. (Don’t worry, I’m fine now.) During my thirty-four hours in the ER, I had the opportunity to observe the other patients crowded around on gurneys, in wheelchairs, or in chairs with canes and walkers resting nearby. The ER was overflowing (I was told later that their capacity is 35 and there were about 100 people waiting), and most of the people were older than 60. The doctors and nurses were incredibly busy and were doing their best to provide attention and comfort to everyone. Yet medical care wasn’t all some patients needed. The older people waiting alone needed an advocate. They needed someone to help them understand what the nurses and doctors were telling them and doing to them, someone to reassure them during the long wait to be seen by a doctor and/or to be admitted onto a hospital floor. More than several people were obviously very confused and agitated. They, like me, were waiting for hours, even days until they received care or were admitted to a room. But unlike me, they did not have family there to support them (my fiancé was with me), and they were not able to, or at least did not, verbalize their discomfort and need for food, water, or the bathroom.
After two nights, I was finally admitted to a cardiac surgery floor. I didn’t need cardiac surgery; it was just the only bed available. Every person who entered my room, from aides to meal servers, physical therapists, nurses, and doctors, was surprised to see someone under 60 on their floor. Each of them asked me, “What are you doing here?” I realized that they are so used to working with older people that someone obviously younger than 60 seemed out of place.
This whole episode got me thinking about the training hospital personnel receive in geriatrics. If everyone on the cardiac care unit expected to see a patient older than 60, and if most people in the ER were over 60, then shouldn’t all personnel receive training in geriatrics and care of the elderly? Yes, but this isn’t likely. Most medical schools do not have a geriatric curriculum or rotation, which is why the John A. Hartford Foundation provides grants to schools of medicine, nursing, and social work to help in developing more leaders and curriculum in geriatric education.