2015 was a hard year for my father. He’s a remarkably healthy 89 year-old, with no diabetes, no hypertension, and (most importantly) he’s got a sharper mind than I do on most days. Perhaps that’s a low bar to cross, but it’s pretty good for him. I think this is from all the crossword puzzles he’s done over the years.
Dad’s troubles started around the middle of the year when he started having low back pain. This pain progressed from mild pain to being so severe that he required a wheelchair to get around the house. This is the man who, a year after breaking a hip, was impossible to keep off of a stepladder to fix something on his roof. It was a big change. After trials of conservative treatment, he was eventually diagnosed with a compression fracture of his lumbar spine (presumably from steroids he took for an inflammatory problem).
Given the severity of his pain, he ended up going to a back specialist to get a procedure to fix the compression fractures and, presumably, reduce his pain. Unfortunately, his pain increased and changed after the procedure. It got so bad, in fact, that he ended up being hospitalized in November for pain control.
The hospitalization was confusing for both him and me. It wasn’t clear if his pain was from a problem in his back, as it had moved to his leg. Yet while in the hospital he didn’t get any radiological study to determine the source. Plus, he’s quite resistant to the effects of narcotic pain medications. I really don’t like to intervene on behalf of family members unless it’s absolutely necessary, but I finally ended up talking to the hospitalist who was quite nice, but not much help. Dad was being discharged to rehab the next day and I still wasn’t clear on what was wrong after a week in the hospital.
He spent the next few weeks in bed most of the time, continuing in significant pain despite increasing dose of narcotic medications. His PCP (who I like) has had enough and feels Dad’s pain is from spinal stenosis, an arthritic condition that causes compression of the nerves in the back. There is a surgical cure for this, which, despite Dad’s age, he’s a reasonable candidate for. Any surgical risk is outweighed by the near 100% chance of things being terrible if we do nothing.
The reason I’m writing about this is not that I think his care was unusually bad; the problem is that his experience, especially in the hospital, is a frequent experience many of my patients have with their care. My dad has the great advantage of having a doctor he can talk to any time, which is a lot more than most people get. He colorfully described his hospital stay as “kicking the can down the road,” explaining that it seemed like nobody was trying to fix the actual problem but rather just do enough on him so they could pass him on to someone else and move on to the next thing.
I see this with painful frequency in my practice, which is especially frustrating since I am willing and able to talk to other doctors participating in the care of my patients. As much as I want to coordinate their care, I can’t help them if the other folks caring for them aren’t interested in working along with me. Calling the hospitalist and PCP for my dad was not a simple process, and I couldn’t help (despite their absolute cordiality) feeling like I was adding extra to their already busy days. They aren’t bad, they’re just normal in this. It’s obvious that our system is anything but patient-centered.
This all got me thinking about how to use my unique situation to improve this problem. It seems to me that what people need is some sort of medical Sherpa that can trek with them through the unfriendly and unfamiliar world of healthcare that exists outside of my office. People are quick to accept non-answers from specialists, to be misconstrued by ER doctors, and to spend a week in the hospital without knowing what is going on. Other doctors are far too willing to accept fragmented care, not knowing the context of the current hospitalization or outpatient consultation.
I’m not sure how this could work, but I’m pretty sure that care will continue to be fragmented until we do something to defragment it. This costs money, causes errors, and, as is the case of my father, puts people through far too much unnecessary pain. He’s getting help now, but I’m pretty sure he’s gotten far better care because of my advice to him and my intervention. How much more would he have had to suffer to get attention? How many folks are there out there who are in pain (or worse) because of this problem?
I’ll let you know what I come up with. And keep my dad in your thoughts/prayers. It sucks to have someone you love suffer and to feel powerless to help.
Rob Lamberts is a primary care physician based in Georgia
Categories: Uncategorized
Ahh, the classic health care fragmentation experience of the unsuspecting geriatric patient. Your Dad is so very lucky to have you as an advocate. Assuming resources are in place, how about a geriatric care manager? They are expensive and non-reimbursable, but for those with financial resources may be a good option.
Re: Sherpas, they are notoriously underpaid and under-appreciated for the incredible back-breaking and life-risking work that they do, in what has been acknowledged as decades of racial and socioeconomic exploitation. Is this really the model we want to invoke in re-designing our health care system?
My second thought is that I like your idea of a patient care coordinator/navigator (this is what they are called at my institution). I find them somewhat useful in my role as an outpatient specialist, in terms of helping patients re-connect with their PCPs for the primary care issues they ask me about. I find them less useful when any type of clinical knowledge is needed to better assist the patient with their specific medical issues. In general they are a cheap, young, enthusiastic workforce, but without a clinical background, not much more useful than administrative assistants. For example, they would not be able to triage the ED versus office visit question (that clearly requires assessment skills), nor would they really be able to back-translate medical jargon into lay person language that makes sense to patients and their families. Traditionally this role has been filled by nurses, and in my opinion, should continue in this way–nurses have the right training and background to fill this role indispensably. But at the end of the day, someone needs to pay for it. And since nurses now make decent money, this can be cost-prohibitive for anything but private health systems with deep pockets. I don’t have a clear answer, but thought I would put this out there.
Good stuff, Peter. My hope is that the folks in my practice can get this without going to Canada.
Agree, but there is something to a personal approach to this as well. I just got this from a patient: “Thanks again for being the absolute best health care experience ever.” We do connect with our patients electronically, which is part of the way I’ve differentiated myself from other DPC doctors. We are heavily using electronic communication and even moving toward connecting electronically to their sensors and devices (using Twine Health (http://twinehealth.com). I don’t shun technology in the least, I think it enables. Unfortunately, in the current system technology is used to bury us more in data by which we are measured by non-clinical people. My advantage is simply that I am only worried about improving the life of my customer/patient and continuing to give them the best health care experience ever.
Maybe we can learn from those socialist hordes in Canada.
http://www.hqontario.ca/Portals/0/documents/pr/news-release-experiencing-integrated-care-1504-en.pdf
You’ll need to type in the link to the full report as the link has a period at the end. There is a section on “For Caregivers” and “For Patients” as well.
Rob, why don’t you read this.
Since the Canadian system is more centralized they’re able to implement across the board changes easier instead of fighting with docs and hospitals on turf issues.
Agree.
But,
“Follow with open systems where sensors and monitors stay with the patient regardless of care setting. Provide live video and audio to all authorized care-team members in hospital settings, at home, and in-transit. Provide access to diagnostics and treatment just-in-time with low cost transport systems across facilities on-demand.”
How does that get paid for?
Sherpas are well-adapted to the ultimate in isolated situations where both transport and communication are scarce. We live in increasingly connected and accessible places. We have sensors, implants, smartphones, drones, digital records, and Uber. The hospital and its attendant human and EHR systems are clearly not keeping pace. The hospital systems are closed and the hospital’s information systems are siloed – by design. Almost everything in healthcare is designed around the institution the way Sherpas are designed around the mountain.
Instead of Sherpas, we need patient-centered design. Start with real time access to all health records including notes via APIs. Follow with open systems where sensors and monitors stay with the patient regardless of care setting. Provide live video and audio to all authorized care-team members in hospital settings, at home, and in-transit. Provide access to diagnostics and treatment just-in-time with low cost transport systems across facilities on-demand. The institutional focus of our healthcare is an expensive anachronism and Sherpas would be treating the symptoms instead of the cause.
Both docs and nurses are too busy clicking boxes.
The editor put the part about “Uber.” Good click bait. It’s their skill, you know.
Fragmentation is getting steadily worse. The fact is that docs have less and less time to deal with “extraneous” things like care coordination. Sad.
Clearly it would need to involve the PCP. My practice is already shaped this way (in fact my patients in response to this thanked me for already being their “sherpa”), but finding a way to put someone truly at the point to help people as they navigate the system outside of my office is still pretty complex. This person, for example, would help the patient decide if they should go to the ER or prompt care vs. Coming to my office. This person would also make sure specialists know why the patient is being seen and communicating to me the take-home from the specialist. I don’t like to do things without doing them right. We already do some of these things, but I think it needs to be on a different level.
“Uber for Health Care”?
Ahhh… a clickbait headline (it worked). But glad there was no analogy inferring that health care needs “an Uber.” That’s the LAST thing it needs.
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Sorry about your Dad.
“not that I think his care was unusually bad; the problem is that his experience, especially in the hospital, is a frequent experience many of my patients have with their care.”
Yeah, that was my 2015. I call it “health care shards” on my blog. And, the fragmentation problem doesn’t seem to be materially abating.
Here are my question(s)
Isn’t it the obligation of the people building the system to build a usable product?
We talk a great deal here about building better EHRs and better widgetry – the design thinking needs to be applied to the real world.
What kind of qualifications are needed for the role you’re describing?
I think we asked this question before and ended up with hospitalists.
My guess is that the “sherpa” needs to be a team of people headed by a doctor or team of doctors, staffed by nurses, administrators, and patients using technology and data.
/ j
The Sherpa used to be the Pcp.. Welcome to a world of shift workers not invested in patients. Is it possible to structure a practice in that fashion today?