Creating a continuum of care for a stroke survivor
August 11, 2017 7:51 AM   Subscribe

My dad had a major stroke 2 1/2 years ago. He continues to have ongoing health problems. None of his doctors talk to each other or me/my family. How can we fix this?

My dad had a major stroke during bypass surgery in January 2015. He is able to walk and talk, though his right side is unusable. Mentally, he does well enough to still work in a consulting capacity as a lawyer, but my family has noticed that his short-term memory became bad after the stroke and continues to get worse.

He's been to the ER at least a half-dozen times since the stroke, often for dizziness, lightheadedness, and/or tingling on his right (affected) side. He's also had other complications, including c. diff. He had the stroke at hospital A, which is where he always goes to the ER. This week, he spent 2 days at hospital B (which is in the same network as hospital A). All of his doctors (neurologist, cardiologist, etc.) are in the same network at these two hospitals except his PCP, who is in a competing network and located an hour away.

As you may have guessed, he has absolutely no continuum of care. From what we can tell, there's very little communication or record review occurring between the doctors that are even in his network. Yesterday when he was discharged, the nurse noted a symptom on his papers that requires an ASAP follow-up that the doctor who treated him hadn't even told her about. We're all frustrated because he's had the same ongoing symptoms for months now, and he just keeps going to the ER, everyone tells him to follow-up with his doctors, and then they discharge him. We feel like everyone is treating him in isolation.

To add to the difficultly level here, the doctors all speak with him directly when he's in the hospital, because often times we're not with him when he gets test results and he seems very "with it" for someone who's had a stroke. But because his short-term memory is so bad and his comprehension can be iffy, he can never tell us exactly what they said. Case in point: he had a CT scan this week that he told us was "clean," but the nurse told me at discharge that it showed some blood in his brain, which is why they ended up doing a follow-up MRI before he left. When I first got to the hospital yesterday, I asked to speak with a doctor to get the full rundown on his test results. The nurse's aide told me he would at least be able to get the nurse to speak with me, but they discharged us without letting me talk to someone.

And finally, none of his doctors know that his anxiety has gone through the roof over the last few months, and it's likely not helping his symptoms.

I work full-time and am out of PTO from going to as many hospital visits/appointments with him as I can. My stepmom doesn't drive and is completely useless as far as coordinating his care.

How can I step in to make sure that everyone is on the same page, get him the help that he needs, and get my concerns addressed? Is there a person in the hospital system that helps with this kind of thing?
posted by anotheraccount to Health & Fitness (8 answers total) 1 user marked this as a favorite
you are looking for a "caseworker". a lot of hospitals/networks have them, some don't (mine doesn't, which sucks).

alternately, if all these people have patient portals, can you log in to those and send messages, telling them to contact X dr. about Y issue? i do that a lot to try to at least give the illusion of continued care among my doctors.

finally, make sure you have healthcare power of attorney so that you are authorized to get test results etc. on your dad's behalf.
posted by misanthropicsarah at 8:09 AM on August 11, 2017 [6 favorites]

My insurance company just offered me the services of a nurse-practitioner who would coordinate all of my various medical needs, doctors, etc. Check to see if your father's insurance offers a service like that. I, luckily, don't need it, but it sounds like something that might be a good fit for your father.
posted by mareli at 10:21 AM on August 11, 2017

Some ideas that don't answer your question might make the situation a little better:

First, do you have the health care power attorney for your father? You can't override his own decisions but allows you step in when he can't and also helps get access to information. If he doesn't want to that, you might want to get a notarized letter allowing access to his health information. Lots of doctors aren't that picky about HIPAA regarding family members of the elderly but they really shouldn't be talking to you without his consent. So, that just lays the groundwork.

everyone tells him to follow-up with his doctors, and then they discharge him.
So, is he following up with his doctors? Or are those appointments not being made by your father and/or stepmother?
Usually the ER doctor and the hospitalist are hospital only doctors but the cardiologist and neurologist would do the follow up appointments in their own office. Those are scheduled times when you know the doctor will be in the room to answer your questions.

Also, is he staying in frequent contact with his primary care? There should be a system for the primary care doctor to access to the notes from the other doctors - he/she can then pick up anything that this being dropped and let you know what to do next. You should also let the PC know about his anxiety - that is exactly the kind of thing that they can help with and then if they prescribe something, it will be on this med list.

Does he have a list of current medications and medical conditions that he keeps with him at all times? We did this for my MIL and it was great that she didn't have to be quizzed about this stuff while she was under stress - she just pulled out the piece of a paper and let them copy it. Assuming your father was Ok with this, you could use it to flag his short term memory problems.

I don't know if this would work, but I would call the ombudsman office at the hospital and ask if it is possible to flag his record for short-term memories problems - that all information needs to be in writing or shared with a family member. They can let you know what is possible.
posted by metahawk at 11:39 AM on August 11, 2017 [5 favorites]

Caseworker or "care coordinator" -- I had to hire one of the latter to mediate between hospitals, insurance companies, the VA, and so forth, for my father, to be sure the various providers all knew what was going on, that care was adequate, and that I was up to date. You can usually hire them for a short time or an ongoing basis. This is what you want -- they make all the phone calls for the info, and then, depending on their job parameters and follow-through, either they also make sure that the follow-ups are followed up, or at least they are sure that you know what was said, so that you are able to make sure care is kept up with. This is likely to be an ongoing issue, so best to professionalize it to the extent possible so that your energies are spared and can be used when leverage is needed.
posted by acm at 2:08 PM on August 11, 2017 [1 favorite]

I'm sorry you and your family have to deal with this. It can be frustrating for sure. The combination of stroke, with maybe some aphasia, plus delirium from getting shuttled back and forth to the ED/hospital, can really make things challenging.

A hospital case manager can be helpful in coordinating the transition from hospital to discharge, helping you set up home services like medical equipment or a visiting nurse, but I'm not familiar with them being hired by families to deal with things like follow-ups and appointments. If that's possible, it sounds like a great service, though.

You should definitely look into getting a healthcare power of attorney, which is different from a financial POA. As metahawk says, it doesn't override his own wishes, but designates you as his back-up and allows you to access medical information much more easily. Right now, your step-mother is his default medical decision-maker, and it sounds like that might not be the best thing. FMLA might also apply in your situation which would at least get you (unpaid) leave to go to your dad's appointments.

To address the specific question of how to manage to talk to the doctors while he's hospitalized -- ask the nurse, or even the unit secretary, what time the doctors round. In my old hospital, we usually did table rounds 8-9, then bedside rounds until 11 or so. If you are able to be there in person, rounds are the best time to catch the doctors and talk to them; that way you are also present when they talk with him and examine him and update the plan of care for the day. You can also try to set up a time to talk with your doctors by phone -- afternoons are often best for this. I used to do this for families who lived far away and couldn't travel to be with their loved ones; every day at 2pm, or whatever, was a standing phone call with Mr. So-and-so's granddaughter. See if you can identify the best time to talk with your dad's hospital doctors, and making it a regular appointment will help them not forget.

Note that even if hospitals/doctors are "in-network," they likely have no way of accessing each other's notes. In network is an insurance thing; the medical record is a HIPAA thing. Assuming this is an electronic medical record, everyone at hospital A will be able to see what everyone else at hospital A has done, but they will not have any access to hospital B, and vice versa. (This is very slowly changing through the Care Everywhere functionality in certain EHR software, but it's a bit cumbersome and doesn't always work). If this is a place that has paper charts, nothing will be readily available except his current encounter; all prior notes get bundled into the medical records dungeon and can be pulled on request, but it takes a while, like getting a library book out of storage. The suggestion to keep a list of medications and diagnoses, and a list of his outpatient doctors' names and addresses, in a wallet card is a really good one.
posted by basalganglia at 2:57 PM on August 11, 2017

What you and your father have experienced is completely unacceptable. What's supposed to happen is this:
- Your father's physicians should be communicating with you with your requests when you are present at the bedside.
- They should be speaking with you at your request as long as your name and number are listed in the chart and your identity is confirmed, whether or not you're his designated power of attorney. You should have been given a code when he was admitted for your calls in to the hospital.
- The attending MD, who is likely a hospitalist, should be speaking with you and making an effort to get in touch with you if they know you're looking to speak with them and the MD has your contact information.
- The attending MD, at the time of your father's discharge, should have prepared a discharge summary outlining a) reason for admission, b) clinical course, c) relevant studies and findings, d) a list of medications including any changes, and e) a plan of care for follow up. This summary should have been sent and made available to all consultants, as well as your father's primary care physician.
- Your father's PCP should have received, at the very least, this summary, and should be able to share it with you.

One of the roles of PCPs and hospitalists is to consolidate information and form a foundation of care for the future. This continuity of care is the cornerstone of hospitalist medicine; the mitigation and avoidance of "voltage drop" is in the very first chapter of the textbook for hospitalist medicine, for crying out loud!

I can offer a thousand excuses as to why I might be "too busy" to talk with anyone about anything: I'm very busy seeing other patients. My time is limited. I have more emergent patient care issues to deal with. Family members are not there when I round or follow up on patients. I don't have so-and-so's contact information. I have to eat. I have to shit. Et cetera.

All of these reasons are bullshit, and I'm not trying to tout myself as a superior physician in saying so: everyone knows it's bullshit, including physicians and administrators. We know it because there's something called the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) that's driving everyone nuts and has one again become the new Hot n' Tasty thing hospital systems have been going bananas over.

Patients and their families are their strongest advocates. I'm not one to typically complain about poor or unsatisfactory service in any situation, but this is your father, his health, and his life, and it impacts you, his family. You're not dealing with overcooked chicken nuggets.

What I would do were I in your shoes, and had experienced what you've gone through:
- Obtain medical power of attorney and make copies of it, scan it/take photos of it, and keep it readily available.
- Contact the hospitals' medical records departments and ask for copies of your father's medical records and request that they forward them to your father's PCP.
- Type up and keep handy your own version of your father's medical issues, which I will outline at the bottom of this post.
- Contact hospital B's patient advocate, clinical coordinator, case manager, and administration and relate your experience and concerns, in writing.
- If you're ever in a situation where your father's in the hospital again, request to speak with his attending MD and consultants in person. If they are not immediately available, set up a time to meet. Leave your personal contact information with the unit secretary, nursing staff, and on the whiteboard in your father's room. Ask the staff to ensure that your name and contact information are current in his chart.
- If he's ever in the hospital again and you are not getting an adequate response or answers that you can understand, request to speak with the hospital's patient advocate, case manager, or administration.

Understand that nursing staff often cannot give out information for a number of legitimate reasons, apart from the circumstance of being unable to verify the identity of a caller or visitor for privacy/HIPAA reasons, including the inability, inexperience, and/or policy precluding the interpretation and communication of test results.

I'm a hospitalist and run my group. I often get calls from patients and families who are upset for various reasons. I often get calls from administration, risk management, patient advocates, case managers, and nursing staff relaying patient/family dissatisfaction. Sure, sometimes some people have (and I really, really dislike saying this) unrealistic expectations, are extremely difficult to communicate with, or are otherwise unreasonable.

But that's my job. We're supposed to explain things in a way that patients and their families can understand. While, we practice only in hospitals as hospitalists, we're supposed to arrange for a safe disposition and follow-up, and not just say "hey, your acute issues are dealt with, you're being discharged and good luck!" We're supposed to tie things together as a primary care physician would in the acute, hospitalized setting and summarize things so that the outpatient primary care MD is able to take over with continuity. I'm not the smartest MD out there, nor am I specialized in any particular field, but I know enough to call for help, consolidate the recommendations and findings of specialists, organize all the issues and plan of care, and to sit down and try to communicate things not just to the best of my ability, but to the understanding of my patients and their families.

How else do we try to promote recovery and prevent readmissions? How else are people supposed to make decisions on what path of care they would like to pursue?

Anyway, apologies if this seems like a rant. It just drives me totally nuts to hear about situations like this, because it's unfair, immoral, lazy, and plainly, it's bad medicine. I hope you and your father are able to get better care.

And now, in regards to trying to develop your own records, which may make it easier for any future visits to the hospital or physicians: I'd type up your own version of his medical history and keep it readily available. It should include:
- Contact information for you and anyone else.
- If relevant: a copy of any advanced directives and POA paperwork.
- Your father's PCP's name and number, as well as his outpatient specialists, eg: neurologist.
- An up to date list of medications, allergies.
- A list of dates of any hospitalizations, including hospital name.
- A very simple/bare bones list of medical diagnoses as you understand them.
- A list of any surgeries with exact or approximate dates.
- A list of any specific concerns that you'd like addressed.

You might consider writing out a brief narrative of any studies related to any medical diagnosis, as best as you're able to understand and communicate.

You're not trying to replicate his medical records or chart. You're trying to have a summary that people can read, and that you can refer to for a time when your mind might otherwise be dealing with stressors.

Here's an example (all fictional, typical for a common, older patient who's had a stroke):

DOB: 2/3/1945
555 Main Street. Anytown, NY.


Primary contact & Son: MR. ALLEN B. PUBLIC. Cell phone: (555)555-5555.
Wife: MRS. JANE Q. PUBLIC-SMITH. Cell phone: (777)777-7777.

NEUROLOGIST: Dr. Umberto V. Williams
CARDIOLOGIST: Dr. Quintin R. Smith
CARDIAC SURGEON: Dr. Normal O. Pascal

ALLERGIES: PENICILLIN (hives), ATIVAN (hallucinations, confusion).

1. Aspirin 81mg DAILY
2. Lisinopril 20mg DAILY
3. Simvastatin 40mg EVERY NIGHT
4. Furosemide 40mg EVERY MORNING
5. Carvedilol 12.5mg TWICE DAILY
6. Memantine 10mg TWICE DAILY
7. Vitamin D 1000units DAILY
8. Multivitamin DAILY.
9. Sublingual nitroglycerin 0.4mg as needed.

7/1/2017-7/5/2017 General Hospital, Anytown NY for C. Diff
3/3/2015-3/9/2015 Memorial Hospital, Sometown CA for cardiac bypass surgery and stroke.
Rehab Center, Sometown CA after bypass surgery and stroke, 3/10-3/20/2015.

1. C. Diff colitis in 7/2017
2. Stroke after cardiac bypass surgery in 3/2015.
3. Right-sided weakness since the stroke.
4. Memory issues, possible dementia per his PCP.
5. High blood pressure.
6. High cholesterol.

1. Left knee replacement, 2015
2. Cataract surgery, left eye, around 2010.
3. Appendix removal around age 30.

- He has memory issues. Please call me with any findings.
- I am concerned about his anxiety, this is new and has worsened over past several months.
- At home, his blood pressure always seems to be low: when we've checked, the top number is always around 80 or 90.
- He has lost about 20 pounds over the past three months and has poor appetite.
- I am worried that he's on too many medications/I'm worried he's not taking his medications regularly.
- He seems to be stumbling around when he walks. I think he fell last month.
- I am not sure why or how often he's supposed to take his nitroglycerin.
- I am worried about his family and his primary doctor not having a clear and coherent understanding of what's going on or his plan of care after he's discharged.


Being relatively brief is key, but in addition to being easy to read, keeping it in language YOU understand will make it easier for everyone else to understand.

Finally, let me repeat that you should at no point feel like you're inconveniencing anyone with your requests for records, explanations, or time. When I see family members and friends who come to visit their loved ones, I'm relieved. When people come in with their medications or a list of medications, or a summary as I'd listed above, I'm relieved. It tells me that patients have people who care for them, when not everyone does. I often get information that is not readily available that may help me formulating a treatment plan. And finally, it lets me know what I should try to address and answer so that people can make informed decisions for their care.

I wish the best of luck for you both.
posted by herrdoktor at 11:01 PM on August 11, 2017 [8 favorites]

Whoops, forgot to include cardiac bypass surgery, 2015 in the example's section for surgeries. Also would including city/state/phone numbers of the listed MDs.
posted by herrdoktor at 11:11 PM on August 11, 2017 [1 favorite]

Hello, I absolutely agree with the excellent and detailed recommendations of the illustrious physicians of AskMe above. As an ER doctor I have another minor perspective to add:

Our usual state of affairs, of course, is that we never start off by knowing our patient's backstory. Sometimes when things aren't so busy we do have a chance to do a 'chart biopsy' and review helpful documents like the last discharge summary from the hospital, or if the primary care doctor is on the electronic medical record (EMR) then it's great that we can also peek at their most recent notes. We can see a fairly up to date "problem list" and medication list, especially if the primary care is in the system, that most of the time would even negate the need for a written list of conditions and details (although definitely make one, because hospitals on different EMR systems won't be able to access this information!). However, a lot of times we are very busy and we have to walk into a patient's room "cold". Unfortunately this means we're often working with limited or inaccurate information provided by the patient - this approach makes "shotgunning" a workup much more likely than if detailed medical records and a family member are available.

Our goal is not to diagnose problems or to act as a primary care physician and coordinate care, for the most part, which is different from how hospitalists on the inpatient side will approach things. Our guiding principle is "what are the worst things that could be causing the symptoms this patient is experiencing right now, and how can we rule them out?" We evaluate for life and limb threatening conditions, i.e. emergencies. If we do not find them, we may or may not make another diagnosis, but if we cannot reasonably make the diagnosis in the emergency department settings, we often refer to primary care doctors or specialists for follow up to get further testing/re-evaluation done.

That's just a little insight into the emergency department staff mindset. But I will also point out that many EMR systems (including one of the most ubiquitous, Epic), have a 'flag' system for emergency department patients, designed for busy physicians who are only going to have the chance to notice an alert associated with the patient's record and not enough time to actually review notes and find crucial information. This may be called something like the patient's 'bulletin board' or 'flag, but it's something that shows up on the tracking board as soon as the patient is registered, or causes a popup as soon as the chart is entered, and it will note something critical to caring for the patient (for example, flag for drug seeking behavior, flag for fraudulent identity, flag for a transgender patient and what their preferred name and pronoun are since these cannot be changed in the chart until patient changes them legally) - the information that the patient has poor short term memory and is unable to understand consent or discharge instructions and such, and that all such information needs to be given to family member X (with phone number provided) is information that would be useful if placed in that part of the chart. Just something to ask about.
posted by treehorn+bunny at 12:55 PM on August 12, 2017 [1 favorite]

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