You may be wondering what happened with Ken, whom I wrote about in my last post.
Well, he stayed in the hospital for 4 days. At the end of his first day, a palliative care consultant called me and left me a voicemail with recommendations related to pain and constipation. He left me a cell phone number. He didn’t answer when I called him back, so I left a brief message and thanked him for the update.
But no hospitalist ever called me and no updates were faxed to me. On the fourth day (a Monday), I called the floor and again asked to speak to his doctor. His nurse came to the phone, explained to me the discharge plans, and then asked if there was anything else I needed.
Well, yes. I need to know what happened to him medically, not just what facility they were planning to discharge him to. Why did they keep him for so many days? Ken himself had left me messages saying the doctors were doing a lot of tests but not telling him the results. (Patient-centered hospital care, where art thou?)
The nurse was unable to answer these questions. I said that I wanted results of the tests faxed to me, and that I’d also like to talk to his doctor.
Several hours later, a doctor finally called me. He sounded young and harried. “So, what do you need to know?” he asked me.
This is annoying. I’m the doctor who has followed the patient in the outpatient setting. I sent him in with a letter explaining my involvement and with all my contact info, to boot. I need to know what you in the hospital are doing to him, what you have diagnosed him with, what you are working up.
Naturally, the hospitalist was not the hospitalist who had admitted Ken a few days prior. This one had only known him for two days. He explained some of what they’d done and why. I had concerns about the why, because Ken’s goals for medical care are a bit atypical and it wasn’t clear to me that the hospital team had entirely understood the approach we’d been taking.
But the hospitalist did not seem very interested in coordinating with me. This was not really a surprise; I’ve long noticed that many clinicians practice in their own bubble of context/interest/specialty/organ, and seem to have little interest in synergizing with other clinicians, much less considering their work as meant to support that of the PCP.
People often say this is because of problems with health information exchange, and I’m sure that’s a big part of it. But I noticed this phenomenon years ago at the VA, where everyone could access the notes of other doctors and I saw how many doctors did not do so. So I suspect there is a big cultural/habit component. Clinicians are in the habit of taking a narrow focus. To broaden their focus would take them more time and effort; coordinating with others and integrating their work into yours is the harder road, not the easier road.
Wouldn’t it be so much better if hospitalists saw their role as supporting the ongoing patient-PCP partnership (especially in this case, when they spent time working Ken up for the pre-existing problem I’d been working on before, and that I was presumably going to have to follow-up on after). Not sure that is how most of them see it, but hopefully we will keep moving towards that.
Back to my conversation with the hospitalist. Again I asked for them to fax me the results of all the studies they had done, along with the discharge summary.
The hospitalist replied that he’d have the nurse send me a CD of results.
A CD?? Like, by snail mail? Oh please. I replied that I’d like all of this faxed, at their earliest convenience.
“Oh, you have a fax?” he replied.
“Every doctor has a fax!” was my startled reply. But after I hung up, I realized that what seems glaringly obvious to me is not obvious to him at all. If you work exclusively in hospitals, do you have a fax? And do you have any sense of what your colleagues in long-term relationships with patients are trying to do?
(Frankly I wish I did not have to depend on my fax line so much, but despite everyone’s efforts to modernize and/or disrupt healthcare, the fax remains a dominant mode of communication for outpatient physician practices. Go ahead and try to refer to home health without faxing.)
Of course, after that conversation, I never received a single bit of communication from the hospital. No discharge summary. No test results.
Ken was discharged to a SNF and it was his care manager who managed to get a hold of the hospital discharge summary and who sent me a copy.
Trying to coordinate with the SNF
When I finally got a copy of the discharge summary, I found that the hospitalists had made significant changes to Ken’s chronic medications. They had quadrupled one of his psych meds, and had also increased medications likely to worsen his constipation.
(And of course, the discharge summary listed Ken’s system assigned PCP, who hasn’t seen him in years, and made no mention of my involvement in his care.)
Most of the medication changes seemed at best unnecessary and in some cases risky for Ken’s health, so I got on the phone and called the SNF, to try to improve the medications.
The SNF staff were polite but they informed me that I would have to send them a signed release of information before they could send me a copy of Ken’s medication list.
Er…he is at the facility. How can I get him to sign a release? Can’t they just go talk to him and confirm it’s ok to send me his information?
When I asked to talk to the SNF doctor, they said she comes to the SNF three days/wk, that they are not allowed to give out her contact info but they will pass on a message and she will call me back. However, they noted, she probably wouldn’t divulge information to me unless there was a signed release on file.
Again I found myself marveling at how many hoops one has to jump through, just to do the right thing for a patient.
I marshalled my trusty fax service (mine’s digital and integrated into my EMR) and sent a letter explaining that I’d been following Ken for years, had prescribed his medications at his previous facility, was the clinician who helped initiate his recent ED visit, and was now concerned about the medications listed on his hospital discharge summary. I ended by asking them to fax me his SNF med list asap and also requested that they put me in touch with the SNF doc.
Within a few hours, I received a copy of the SNF orders by fax. (And no, I didn’t fax them any signed release.)
It was the same sub-optimal set listed on the discharge summary. I faxed the SNF a letter for their SNF doctor, suggesting changes and explaining why I thought they were indicated. I also called the SNF and told them I thought these changes should not wait another two days. They said they would call the SNF doctor and have her call me back.
She called 48 hours later. In her message, she said she’d found the message in her box and that they had never called her. However she was in agreement with the suggestions and would implement them right away.
There is more but I will stop the story here.
Suffice it to say that we have a long way to go, when it comes to care coordination. Who will connect all the dots and help patients and families ensure they are getting the right medical care? As best I can tell, it remains really hard for PCPs to do this.
Seems doubtful that MACRA, MIPS, and alternative payment models will help. But I’d love to be surprised on that front.
genie deutsch says
As an 84 year old, with a husband on stage 5 CKD, how I do prevent foul ups such as you describe if one of us is hospitalized?
Leslie Kernisan, MD MPH says
If one of you is hospitalized, then the other has to be prepared to advocate and double-check on things, as described by Carla Berg in the other comment. Make sure your usual doctor is being kept in the loop. Bring in the home medications, and make sure any medication changes made during hospitalization are made clear to you.
It can be helpful to delegate this advocacy to someone else in the family. There are also professional patient advocates who can do this work, especially if the non-hospitalized spouse is feeling overwhelmed.
Carla Berg says
It is so discouraging that the silos seem worse, not better, after all these years! The only antidote I have seen work for others is to have a very savvy family member or friend present almost the entire time a loved one is hospitalized , asking questions, keeping notes, pushing back, keeping the patient and family informed, coming from a deep understanding of past history and current goals, and keeping all parties informed. But few patients have family or friends equipped to play this role, and as your post points out, the system does not support the PCP who tries to take this role.
Leslie Kernisan, MD MPH says
I think things are a little better in many ways, but the EHR has made it harder to bridge certain silos. Clinicians are also busier and distracted, in part due to the extra workload that tends to come with an EHR (more information to process, information to enter for adminstrative purposes, etc.).
You are right that there is still no good substitute for someone asking a lot of questions and double-checking things.
Gabriela Nieves says
As a medical social worker who worked in a PACE center(All -inclusive care for the elderly) in NJ, I witnessed first hand how care coordination suffered. The silos included also all of the various disciplines (SW,PT, Nursing, Doctors,Dietary, Pharmacy etc) and yet, even in a tightly controlled environment with daily 2 hour interdiciplinary meetings on each and every patient there were multiple miscommunications. Perhaps not as many as for a patient navigating and coordinating this information on their own but case management is of the essence. All disciplnes had access to the medical charts on Truchart (system we used) Problem is: the local hospital that our PACE program was allied to did not interphase with our Truchart and so I found myself relaying information to hospitl personnel . I do not know what the ultimaate solution is… I’m still trying to find a way to keep my patients suffering with dementia from getting their dentures thrown out on the trays!
Leslie Kernisan, MD MPH says
Thanks for sharing this comment. I completely agree with the insight that you are sharing: even teams that are trained and work together a lot experience information falling through the cracks. And of course things are much worse in the absence of such teams!
I do love the PACE model and hope we will see it expand more in coming years.
Susan Thomas says
When my mother (with Alzheimer’s & vascular dementia) was admitted to and discharged from hospital or ER (about 10 in her last four months), I was astonished to find the absurdities of trying to get her meds straight as she came in; and corrected as she was released. The ER docs and hospitalist(s) seemed to have no idea of the rules that assisted living facilities had to follow. If I had not constantly watched that stuff, it would have been a lot worse. (For example, no pain meds in hospital discharge list, because OTC was sufficient, meant ALF couldn’t provide them after discharge without another prescription from their support doctor.) This was also long before I understood about constipation, the adverse effects of antipsychotics on top of anticholinergics, and the confounding effects of non-resident nurse and doctor “oversight” in the absence of mom’s PCP, who was in another state. Then there were the difficulties with coordinating hospice with the ALF support doc, the hospice nurse, and me, who had Mom’s medical power of attorney, but with whom they did NOT automatically consult about changes in medications. What I knew about appropriate palliative care for my mom wasn’t automatically part of their protocol, so there were some absurd consequences that could have been so easily avoided if only they had called me. Anyway, I really appreciate your perspective in this article; thank you! All will need to be explained to my cousin’s kids, who will undoubtedly have to deal with this for me in 20 years or so. Hopefully by then we will have compiled the medications binder for one of them to carry around for reference.
Leslie Kernisan, MD MPH says
Thanks for sharing these insights. Yes, given that so many older adults in facilities get hospitalized or go the ED, one would think there would be better processes for correctly managing their healthcare. But, often it’s messy and error-prone, as you noted.
I don’t think family caregivers should have to do all this work coordinating and checking on things. But until the situation gets better, it’s one way to make sure an older relative gets the care they need, and avoids harm from errors.
Hopefully things will be better by the time your younger relatives are looking out for you.