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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.
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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.
PM&R consult?
So band together with some other similar minded folks and create St Rob’s. You need a system, a group practice–this isn’t 1840s Indiana.
Many of us have been lobbying for Patient Navigators for years. There are some provinces that do this well, not all.
I was just thinking of this a few days ago. We’ve found that having a doula helps with outcomes in OB – and need to do it way more routinely. And a friend’s Dad just went through a similar thing – with none of us knowing what was really going on, even after he flew there for a visit and spoke to his father’s doctors. I found myself wondering what it would be like if we had an incentive that followed the patient through life, rather than the cost to a single hospital for a single admission / readmission. An incentive that put the caring in the right place – where the focus became on maximizing a patient’s health through prevention, noting early signs, addressing the childhood traumas that we now know increase risk for diseases of all kinds in adults (the adverse childhood experiences or ACE studies) and more. What a fascinating place that would be. Happy New Year Rob and wishing your Dad some solutions and relief.
And we need it for co-ordination between providers.I have several related chronic health problems, and see several excellent specialists, as well as my talented PCP. But generally speaking, I’m the one who has to co-ordinate their occasionally competing treatment plans, or differing views on the underlying cause of a symptom. As well as carrying copies of my medical records around, as they are not all in the same medical record system.
I do my best, but despite being a well-educated patient, I don’t always know enough to weigh between the varying opinions. Some of this stuff is out in the "newest research models" space, and I just don’t have the expertise to assess some of the research. What I really want is for them to talk with one another, and summarize likely models/treatement plans. Or, have them talk to someone knowledgeable enough to provide the summary.
Oh, man. I know how this feels, after hands-on managing my own ‘rents much more complex issues for a few years through end of life. There is no care coordination, and given that it seems the healthcare system is only just now waking up to the potential of pop-health (which is rooted in whole-person/whole-community care, not the episodic can-kicking your dad is experiencing), we ain’t even close to it yet.
Since "medicine" is a "science," the system requires an exhaustive, multi-decade, longitudinal study to confirm that water is wet, that gravity makes things fall, and that up is louder. So it’ll be another 15 years before care coordination is deployed at the front line of care by any but family members.
I’ve had this happen many times, and I think that your father’s assessment of the situation is brilliant. The only time I don’t leave a hospital feeling like only symptom care has been given is when my care is handled by my oncologist. Otherwise, the symptom that lands me in the hospital is treated, but no one asks why the symptom is there. My insurance company has assigned me a nurse coordinator who is supposed to act as an interceder and an adviser. I haven’t had the opportunity to observe how that works. I really would like to keep it that way.
Many speak to the idea of "care coordination" but what you raise is more a personal advocate and guide role. I see "care coordination" being implemented in much of what’s called "population health" as a mere function rather than a genuine effort at coordinating a particular patient’s care. See "Lisa’s" comment below.
My brother (a pulmonary-critical care) and I (40+ years an emergency physician) just specialed our 95-year-old previously ambulatory Mom through her hip fracture and on to recovery. No one at the hospital was "bad," but as you note, no one was really interested in integrating her essential tremor issues, anticoagulation issues for a tiny woman, dietary issues for her 6-meals/day management of her UGI symptoms while getting her the protein she needed to recover . . . you get my point.
I’m thinking of retiring in a few years . . . maybe "medical sherpa" is a useful continuing role.
The problem is real, and the solution is attractive. I have to ask though, is it really a good idea to add another layer of helpers to help us manage the problem of too many layers of helpers? Kick the can, pass the buck, move ’em out…. It’s a shame that we’ve come to this.