That time when remote care services would have really helped my family

A week of misdiagnosis, no communication and no help

In my job, I write about the benefits of remote care management programs, and during a recent family medical emergency, I experienced all the issues these programs would have eliminated if they’d been in place. . 

My mom had a bad stroke this summer, although we didn’t know if it was a stroke for 10 days after my father took her to the ER. We suspected, but couldn't get it confirmed. There were big mistakes made in this ER, but it wasn’t just that her care was bad- it’s that her care management - the ability to reach or communicate with ANYONE in her doctor’s office and then get any further care or information - was horrendous. And it led to not only a terrible experience for patients and caregivers alike - but it led to misdiagnosis, unclear information and some pretty bad outcomes. At the onset of symptoms, she couldn’t get an appointment with her long-time doctor, but she eventually got in to see the NP in her primary care doctor’s office. The NP said she  “wasn’t worried” and if it gets worse, go to urgent care or the ER. The next day, my dad took her to the ER in their city (Santa Rosa Memorial in Santa Rosa, CA) because it was getting worse and worse - and without completing a full neuro work-up on a 75 year old - meaning, no CT with contrast and no MRI - presenting with horrific headaches and a sudden onset of confusion and dementia like symptoms - the ER discharged her with a diagnosis of  “headaches” and a referral to see the neurologist ASAP. At this point, I was notified and this is where the care management piece became glaringly absent. 

We could not reach her primary care team for days, and could not get anyone to make referrals, advocate or communicate with her doctor. There was no point of contact, no care manager, no case manager, no nurse triage line  - absolutely nothing in place to help in the remote patient management of a health crisis. And there were no appointments available to see a provider in the near term. In this scenario, the only person who knows the patient well is the primary care physician, but there’s no way to see him or talk to him or have him even know what’s happening anymore. There’s no other point of contact who would also know her story and health status and be able to help reach out to the care team. With constant ownership changes for practices, and an emphasis put only on cost cutting, instead of improving efficiencies and effectiveness of patient care - for example, doing things like removing nurse triage lines to answer questions and take care of things for the patient on the provider's behalf (this practice did that) - there are fewer and fewer ways for patients to receive comprehensive, effective care in this medical practice.   

I recently wrote a piece about the underlying issues remote care management programs should eliminate for patients and practices.  It highlights all the reasons why remote programs enhance care and enhance practice management- all at no additional cost. And it illustrates all the poor care and stress that could have been eliminated in this case with robust remote care programs. There are many things to consider if you are adding remote care management programs to your organization. But a major consideration for many healthcare organizations making this decision is to find a program that will truly improve the effectiveness and efficiency of their practice, while maintaining excellent, holistic, high quality, connected care both in and out of the office setting.

One of the greatest benefits of remote care programs is that they eliminate many barriers healthcare organizations face every day in trying to run a practice and provide excellent, effective, comprehensive care. Well designed remote programs: 

• help keep your patients healthier; 
• provide more support to patients and the practice by expanding the group of providers on their care team, in turn making patients and providers feel more satisfied with the cycle of care and connections each feels to the other; and 
• bring trustworthy systems that streamline the day to day operations of your practice helping to make the care and communication about patient care much better and much more efficient and effective for patients and providers.

Remote care programs help eliminate poor outcomes, frustrated patients, frustrated providers, overburdened staff and practices, errors related to data, care and eligibility, inaccurate or problematic billing, HIPAA risks and exposures, data safety and compliance issues. High quality, scalable remote care management programs help improve the patient, provider and practice experience with easier, faster, more accurate care. 

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Timeline of a broken system - A case for the underlying issues your remote care programs should eliminate

So after this misdiagnosis and referral, no neurologist would see her despite hospital discharge instructions without a referral from the PCP.  We couldn’t make contact with her PCP and could not get through to anyone, could not get a call back, and could not get an appointment for a couple of weeks. There were no automated referral systems that a medical assistant or anyone in the office could facilitate. And really there was no one to triage any calls or patient issues. We could only get through to someone who sometimes takes messages. Meanwhile, I spent the rest of the week and weekend calling every other doctor she has (from where I live in Seattle), and talking to all the after hours services trying to stress the urgency of her symptoms, how many days we’ve been waiting and to connect with her doctor and to make the referral. I did connect and received advice from some of her other very busy non-neuro specialty providers (oncologist, and cardiologist who have better triage and on-call programs) as well as other family and friend physicians. Everyone said  - which confirmed my own feelings and suspicions - she needed to be back in the ER immediately for a neuro work up because it really sounded like a stroke. In her pain, discomfort and disorientation, she did not want to get out of bed or go to the ER. I flew down to Santa Rosa to take her. We had my dad book the appointment the front desk could offer with her own doctor for 2 weeks out (which turned out to be good timing for her hospital discharge follow up appointment because we couldn’t schedule anything else in a reasonable time after that). By now we’re 5 plus days into worsening, obvious stroke symptoms.

• if we could have communicated with an assigned remote care partner, they would have known her and her case better, and  could have facilitated better knowledge of patient and contact with the practice

• if we could have communicated with the assigned remote care partner, they could have facilitated contact with the practice and gotten referrals or insights from the provider about her state. The ER errors and problems could have been caught by her care team if we’d been able to engage with anyone.

• If we could have communicated with the assigned remote care partner, they could have facilitated contact with the practice and through a remote care system’s scalable interconnectivity gotten the referral or more importantly in this case, insights from the provider about her state. Instead, the practice had no idea what was going on because no channels could reach them. 

•  if we could have communicated with the assigned remote care partner, they could have facilitated contact with the practice and had a clinical team advocating for proper care

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Throughout the entire experience, I kept thinking if the practice had had robust remote patient programs in any way, this would not have been such an awful, dangerous experience - and I would not have felt complete disillusionment with the healthcare system - and the care she was unable to receive.

Almost one week after the start of symptoms, I took her back to the ER. I explained her previous visit - no full neuro workup was done and that symptoms were serious and worsening, that we could not get through to a single doctor for a visit or referral and that she needed a full neuro workup ASAP because something was gravely wrong. The ER seemed to quickly grasp the terrible mistakes made at her previous visit almost a week before and quickly agreed with me that something was very wrong and concerning and that she needed a full neuro workup and other diagnostic/rule-out testing done immediately.  As soon as they did the CT with contrast  (which they’d refused to do the week prior) - even before completing the MRI - they saw she’d had a major stroke, likely 7-10 days prior. I knew it, yet was speechless. And all I felt was not only could she not get the referral from anyone - she couldn’t talk to or get seen by anyone who would have helped her and shifted the care plan much sooner to help get proper care.  At further look with the MRI - they saw more and deeper assessment of the issues and she was admitted. The ER made a serious mistake - and they knew it - and their error may have caused worse symptoms- but it also demonstrated that if a proper remote care team and program was in place with her medical practice, she would not have had her care delayed and damage worsen for so long. 

Each error along the way highlighted for me all the issues that a remote care management program and chronic care management program in her practice would have eliminated, and how great the need is for a comprehensive care team and a remote clinical point person to be in place. Remote care management programs ensure a dedicated care manager for each patient who know the patient and with whom they have contact information and open lines of communication. Integrated systems and dedicated caring staff ensure a core part of remote care management - communication. Better communication would have solved many of the issues more quickly and more effectively - even if errors were made outside the construct of a remote care management program - the way it’s designed - staff would have responded and seen the errors much more quickly.  This could have improved her health and health outcomes, mitigated damage and certainly improved the patient experience. It also would have benefitted providers - because they wouldn’t have missed out on a key week to 10 days of a long time patients care and needed to patch things up and try to improve their own disconnect on the back end.  

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Week 2 - eventual hospitalization (for stroke) and upon discharge, and still no word from the PCPs office

My mom was admitted to the ER and hospitalized and managed by an inpatient care team. Throughout the week, there was still no communication from her PCP or the PCP office. I guess there were no communication channels alerting the practice to this further development. And no one called back from the previous messages left all week. Even once admitted - every provider and anyone that came through said - when we asked who does she see after discharge? And can you make sure we have what we need to continue with the neurologist, they said “ oh no, we don’t manage this after; the neurologist doesn’t manage this after - her PCP will manage it”. The in-patient neurologist and hospitalists were excellent, but all said her care upon discharge would be “best managed” by her PCPs office. I asked, “how will they manage it/her if we still haven’t reached or heard from them and it’s been over a week and she’s now been hospitalized”. How do you get care or care management with a practice operating this way? They shrugged and said, he’s one of the best doctors in town - and keep the appointment you made last week so at least you can get in to see him.  No advocacy anywhere.

During the hospital stay there also were issues with her Medtronic heart monitor. They couldn’t read it. Transmission went offline. It was difficult to get re-established once home. A remote patient monitoring (RPM) program, within the suite of remote care services, would have seamless connection, tracking and reporting for any remote patient monitoring devices. 

10 days later, we used the previously scheduled (pre diagnosis and hospitalization) appointment for her stroke hospitalization follow up. This was the first contact with a doctor or provider in the practice since before the initial ER visit over a week and a half prior. He commented on what a mess the office is since the most recent practice purchase by a large health system. And yes, since their takeover, there’s now no way to contact the nurses or any other clinical staff anymore. “Best way to reach me is to message me on mychart.  I will get back to you right away if you contact me this way”. They did not give her a phone number, they did not offer a back alley solution, they said send me - the overburdened doc a mychart message. When the system was tested again weeks and now even months later - with issues that have occurred since - we’ve used mychart and received slow or no responses. Providers are already overburdened and experiencing high burnout - how are they to do all this  - no nurse/triage message line, no certified care partner to make contact on behalf of the patient, no one to message the doc and facilitate any referrals or needs, and of course docs manning their own mychart - are taking days to get through the messages.  They need a better option. 

Overall, she was incredibly lucky.  It was a severe stroke, but occurred in the cognitive part of the brain (parietal), rather than the part of the brain that controls movement, swallowing, etc.  Physically, she did not look like she’d had a stroke - she could eat, walk, smile - had no physical disability or disfigurement. But she had horrible headaches, couldn’t hear and had a sudden onset of dementia-like symptoms that lasted for some time. She’s also experienced terrible vertigo recently and has lost some of her vision. She had a few home health visits that ended quickly with little to no explanation, except that “my supervisor says this is the last one allowed.”  She had physical therapy at a neuro center, which was excellent, but also ended after 6 weeks. We asked if she could continue - even out-of-pocket - and I think she could not. We were told the brain would heal and her symptoms would heal and improve over time - and they did. Relatively quickly. She was incredibly lucky. 

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Ways remote care management programs could have eliminated the problems in my family members’ care 

Remote care management programs:

Eliminate sicker patients falling through the cracks and poor health outcomes, and

Improve patient care and the patient experience

Instead, this happened: When your systems are removed - or in some cases designed to eliminate communication with the doctors and care team, the urgent care is going to be very bad.

Eliminate burnout, staff shortages, lack of connection and communication, and  

Expand your team of empathetic experts

Instead, this happened: Clearly, this practice cut front office staff and provider staff is not sufficient for demand in the practice - leading to no contact, no empathy, no point person and no connection.

Eliminate provider/physician disconnect and lack of information, and

Help physicians have a more holistic understanding of their patients

Instead, this happened: Teams and services have been cut, plus staff shortages mean the physicians have no time to manage outreach or see patients frequently.  Providers can’t provide the care they want to, and aren’t. And no one else is available to provider care either, or then provide feedback into the system/EHR for the provider to see and be in the loop. With this, providers become more disconnected from what’s happening with their patients. 

Eliminate missed care opportunities, errors, inaccurate or delayed data, non-compliance and data safety issues, and

Add seamless EHR integration to streamline and automate your operations 

Instead, this happened: No one caught the errors from the ER, nor could they generate referrals or call backs because you could not talk to anyone who could see you clinically or help operationally. 

Now, more than ever, most medical practices need seamless, high quality remote care management solutions and patients need an advocate from the inside to make all the care and care points they receive work efficiently, effectively and in an accurate and timely way. This would have changed our experience significantly.

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