the continuing care saga…

If you have been reading this blog, you are by now familiar with my ongoing saga of the search for a new POTS doctor. After my POTS cardiologist retired and Scripps (the hospital system where he worked) failed to notify patients, provide referrals to any POTS doctors, or even allow us to see any medical professional of any type at Scripps for the treatment of POTS, one of my fellow bloggers wrote a really great letter to Scripps at the beginning of this year. She signed the letter with her name, and with our consent, the names of many former patients of my cardiologist. She was contacted by Scripps, but with just a basic acknowledgement of her concerns. It never went anywhere, or even garnered a true response.

I was disappointed in Scripps’ response, so I decided to write an official letter. A legal letter. A not-quite-threatening-but-fairly-accusatory letter. I have probably mentioned before in this blog that I’m an attorney. I don’t practice medical practice law – nor do I know all that much about it – but I spent a good 10+ hours researching and writing the letter. I won’t bore you with all the legal shit, but basically when a physician retires or leaves the practice, he or she (or his or her employer) should provide continuity of care. This means the practice doesn’t abruptly stop treating the patient, but instead provides advanced notice and an opportunity for the patient to find a new provider.

In California, the Medical Board provides ethical guidelines for the retirement or departure of a physician from a practice. Physicians or their employers should, preferably in advance of the retirement or departure:

1. notify patients of changes to the practice, preferably by certified mail, return receipt requested,
2. advise patients on how to access and/or transfer their medical records, and
3. assist the patient in obtaining care from another physician.

Where the physician or provider does not follow the proper procedures, it results in patient abandonment. If the abandonment injures the patient, the physician (or its employer) could be liable for medical malpractice.

In my letter, I politely (I lied – it wasn’t polite) reminded Scripps of its legal and ethical obligation to provide continuity of care, cited California ethical guidelines and legal cases that essentially said as much, and reminded them that by failing to provide continuity of care, it had abandoned hundreds of former patients. Although my symptoms have increased in the 8 months since my cardiologist retired, I haven’t really been harmed by the lack of referral to a new doctor, at least to the level of malpractice. It’s a pretty high standard which would require emergency medical intervention. My letter didn’t threaten any claims for malpractice, nor would I have a case if I tried to pursue it. The letter did request that they provide a response with:

1. referral to a doctor (within or outside of Scripps) from whom I could receive POTS treatment,
2. information on how to have my medical records transferred, if the referral was for a doctor outside of Scripps, and
3. an explanation as to why they treat POTS patients through a COVID clinic (more on that below), but have refused to see any of us OGs.

My letter did, however, express my profound disappointment at how they abandoned hundreds of patients (my former cardiologist saw 200+ POTS patients) and so easily violated well-established ethical duties. I was naïve in hoping that disappointment would mean something…that, at the very least, it would inspire some sort of existential reflection about what kind of provider Scripps wanted to be, and what direction its ethical compass pointed. Needless to say…it didn’t.

I received an email about 5 days after I sent my letter, saying they had received it and everyone is short staffed and here’s an article proving it, in case I didn’t believe them, but someone would be in touch. I received a call from a lady a few days later. She was pleasant. I got the sense that her job mainly involves trying to placate unreasonable patients like me who demand answers, without actually giving any answers. I asked if she could provide a referral to a POTS doctor – she said they’re only referring to the cardiologist I recently saw (which they would know I saw, even though she’s outside Scripps, because I was able to have blood taken for tests she ordered at a Scripps lab and the results appear in my patient portal). That was news to me – I hadn’t heard that they were referring people to my new cardiologist. I don’t know if they said they were referring to her because they saw in my chart I had already seen her – that absolves them of any responsibility.

I asked if I could see my former cardiologist’s physicians assistants, since they were very knowledgeable about POTS (almost more so than the cardiologist). She didn’t know. I asked if they were looking for a new POTS doctor. She didn’t know. I asked if they were training any current Scripps cardiologists or neurologists to treat POTS. She didn’t know. Then I asked if she was saying that I couldn’t be treated for POTS at any Scripps location. I know that’s exactly what she was saying, but I wanted her to acknowledge it. I wanted Scripps to come out and admit that they are refusing to treat us. She danced around the question for a little bit, giving vague responses, but I kept asking. Finally, she said no, they don’t treat don’t POTS.

And I asked, “can I see anyone at Scripps at all – a neurologist, cardiologist, nurse practitioner, I don’t care – for POTS?”

“No.”

So there you have it. If you’re not from southern California, you may not understand the magnitude of that dismissal. Scripps has 5 hospitals, 28 clinics and outpatient centers. and 3,000 physicians. They’re not the largest in the area, but they’re a major player here. As a lawyer, I understand the reasoning – you want to avoid future malpractice lawsuits by not assigning doctors who are unqualified to treat POTS patients.

Except that they have an entire brand-new clinic devoted to long-COVID.

In my letter to Scripps, I requested that they explain why they can’t treat POTS patients if they’re treating long-COVID, since (and I cited several journal articles as evidence) in many, many cases, long-COVID is POTS. For the long-COVID clinic, you have to have evidence of COVID through a positive PCR test, so you can’t go in for POTS treatment unrelated to COVID.

This is my problem with the medical profession: long-COVID is the sexy new disease. It’s what’s getting new state-of-the-art centers built, it’s where the money is, so health care is focused on long-COVID and overlooking illnesses like POTS, ME/CFS, MCAS, fibromyalgia, etc., even though in many cases IT’S THE SAME FUCKING THING. Then after a few months, they kick the poor longhaulers out of the COVID center to establish ongoing treatment somewhere else, when there’s nowhere else to go because no one treats POTS, ME/CFS, MCAS, etc. anymore, they only treat long-COVID.

During my phone call, the Scripps representative told me she would send me a letter to respond to some of my concerns. I received that letter a couple weeks later. It said:

I would like to extend our sincere regrets for your dissatisfaction with your care and treatment. I assure you we take issues and concerns such as yours very seriously and take appropriate action to improve the quality of care and service where indicated. Although the findings of this formal investigation are confidential and protected by California Evidence Code 1157, we do acknowledge your concerns and apologize for any undue stress during addressing your healthcare needs.

If you’re curious, CA Evidence Code 1157 just basically says that records of committees of medical, pharmacy, hospital, etc. staff are protected and not subject to discovery.

That’s it. No referral to another doctor, no information on how to have my medical records transferred to a new doctor, no information on why they’ll treat COVID POTS patients but not any other POTS patients. A part of me wants to send them another letter and tell them that they didn’t answer a single question I asked. A part of me also wants to send them a photograph of my ass so they know what they can kiss. But let’s be honest – I’m wasting my time – and everyone at Scripps has already seen my bare ass anyway.

This situation is exceptionally disappointing. It seems like something weird is going on at Scripps. Since August, my cardiologist retired (not willingly). My primary left, and the primary Scripps gave me as a replacement left a few months later. And from the remaining doctors I have left there, all of them have commented on how poorly Scripps handled my cardiologist’s departure. It’s a well-known rumor.

So, I guess this is the end of my Scripps saga. Rather anticlimactic. I will still continue to see my Scripps gynecologist because she handles my uterus with the gentle care it deserves, but beyond that, I don’t know.

It wasn’t until late in life that I discovered how easy it is to say, “I don’t know.” – W. Somerset Maugham

Smell ya later.
– Linds