What Happened to Doctors?
This is a bit of a rant, so I apologize in advance. But I believe that Long COVID has shone a light on the failings of the medical community generally.
Doctors are, at the most basic level, troubleshooters. Their job is to identify a problem and then determine an appropriate course of action. They share this basic concept with lawyers, IT professionals, and even car mechanics; they all use the same basic framework to find answers.
A lawyer who accepts a case is bound to do their best to find the correct path forward. They cannot simply send you to court with a 'best guess' on the law; they have to spend time researching your issue. If they miss law or fail to prepare, that can be their career done.
IT professionals are the same. If you bring your computer in for repair, they don't spend 15 minutes with you, hand yo ua disk, and tell you to schedule a follow-up if the issue persist... they have to dive into the issue, figure out what is causing it, and provide a fix. Sometimes they're wrong, but they're bound to do their best to solve things.
Then... there are doctors. A typical Long COVID pattern:
You pop in for 15-30 minutes. If you have a good doctor, they've done the reading; they know what your issue is and have reviewed the notes you've provided. If they're mediocre, you spend 10 minutes explaining your issue (never mind the notes you provided) and another 3 waiting for them to take notes. Then, they either give you a guess and send you off, refer you, or tell you to lose weight because something something health.
Your symptoms continue. You go back. Repeat the process, the doctor has to catch up. It becomes clear that between appointments, they've not thought about your issue at all. It takes your inquiries to make progress, you spend weeks waiting... and you end up doing your own research, using your doctor as a way to get the referrals because "something something professional." The referrals shrug, say "not my area" and leave you hanging. As soon as you failed to trigger their specialty, they write you off.
Eventually your doctor either runs out of ideas or refuses to consider re-tests. You're still suffering, but they figure you are walking and talking so... not priority. So, you're left with starting anew with a new doc, running your own experiments, or giving in and hoping your body eventually recovers on its own.
To be clear, this is a failing of the entire medical profession. Doctors should be held to the same standards as lawyers: When you take on a client, you take them as they are. You do not get to stop until you have answers. And they should not be the ones having to spearhead the effort.
Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
What a great post.
I'm sorry for what you are going through. There seems to be a slight disconnect in one of your comments near the end. On the one hand, you say that Drs should not stop until they find an answer to your problem. Then it sounds like you're saying the Dr should not be the one who spearheads the effort to find a solution.
I'm probably not reading this correctly, but can you clarify?
And there are some conditions where Drs simply don't have an answer for an ailment. I have chronic idiopathic constipation, and the word "idiopathic" means the cause is unknown, and therefore there is no definitive solution. Now that doesn't mean the medical community stops looking foranwers, but the Dr can do no more for the time being.
I do hope you get better and I wish you all the best.
That was right on and I love your post. Send it to some of my doctors! Never mind, they won't see it or care!
I either have Long Covid or Fibromyalgia, worst symptoms being insomnia, fatigue, and severe muscle pain. My symptoms started 5 days after my first bout with Covid (I've had it twice). My PC Dr at the time wrote everything off as "anxiety" and prescribed an antidepressant. I took it for several months and then weaned myself off. I took my husband to one appt and he and the Dr talked about how they both thought my problems stemmed from depression. Since them a rheumatologist diagnosed me with Fibro. She wouldn't treat me, instead referred me to my PC Dr for prescriptions for meds, which I've read don't help much and have side effect and severe withdrawal issues. Now I'm seeing a functional medicine NP who has me on all kinds of supplements which don't seem to be helping much either, and are expensive. But I'm giving them a try.
This is a great topic and I know I can relate as well.
My previous primary retired and his replacement frustrates me so much. I find her to be dismissive and she just doesn’t seem to want to listen, as she often shows no sign of understanding what I am saying. Over a year ago I reported extreme fatigue and exertion related malaise after a 4th covid infection, which currently remains unresolved. Every single visit I receive a summary and the first item listed is instructions to exercise. It is insulting.
Like many here I am seeing multiple specialists. I am fortunate in that I do not refer referrals under my plan. I never see the specialist that my PCP suggests. I learned the hard way to do my research and pick my own providers. This is time consuming as I use opinions from other providers, internet research, personal referrals when applicable, then cross reference against my in-network listings. I am finding this is improving my success at finding quality care within the specialties but my long Covid presentation keeps causing me to have to add new ones in the mix!
My biggest complaint has been with the hospitals. I went to various ERs five times in the last years and was admitted on two of those occasions. Discharge information provided was sparse and incomplete. For tests performed a doctor’s interpretation of same was all that was given.
Because I am proactive and basically untrusting of hospitals by nature, I always access my records online and download everything when possible. I have found repeatedly that a hospital doctor will interpret something noted on a scan or test as “nothing” so they don’t mention it. When I have taken that same result to a treating specialist they have a completely different perspective. I also found a hospital had neglected to do a test ordered by the attending physician, missing care notes and vitals.
If I had not accessed my own records and followed up with my doctors I would have missed heart damage that is now being monitored by a cardiologist and liver damage that my gastroenterologist decided to investigate, which led to positive tests for auto immune disease. Leading me to research additional specialists now!
I have the technical skills and other knowledge necessary to try to defend my own care but most people do not and should not have to do this. There is definitely a big gap here. While doctors should be doing better I think we could do much better with technology as well.
Just a quick comment about the “managed care”/for profit system vs alternatives.
Not sure what you would propose as a replacement but I do want to mention that having previously lived in Canada where healthcare is publicly funded, I would choose the current US system without hesitation.
As frustrating as it may be here, I have choices and access to services. Prior to moving to the US the wait list for a PCP in my area was apx 2 years. I don’t recall ever seeing a specialist without waiting at least 3-4 months, and you saw the provider they gave you. Preventative care is limited there and screening for common conditions is restricted.
An example of this is mammograms for breast cancer screening. Typically screening here starts at age 40 and occurs annually. In some circumstances initial screening will be recommended sooner, based on hormone usage history, genetic factors, etc.
When I left Canada an initial mammogram was not permitted until age 50 and then repeats were every 2 years.
I recall a coworker’s wife was diagnosed with breast cancer at the age of 47. She was dead within the year. I cannot say that screening would have prevented her death, but it may have allowed her a fighting chance, who knows? If she had been receiving annual exams from age 40 that is 7 years of opportunity to detect the illness that she was denied.
There was this general sense of health care being something that was given or gifted and not a service that the patient is paying to receive. It’s true that the user is not paying for that specific visit, but ultimately the taxes taken for the system have pre-paid for said service and there should be some accountability.
I’ve gone way off-topic here but did want to point out that the public funded systems have many problems that actually make them worse in my experience, and this reality is rarely reflected in the media by those who promote these systems as an alternative to what we currently have in place in the US today. Profit is not always a bad thing within reason, there needs to be a certain amount of financial motivation to continue developing new talent and solutions. Within reason and without corruption and political influence.
Yes what we have here is certainly flawed but we must be careful not to believe false utopian promises of better solutions that would make things worse. Any future solution will need to be carefully crafted with consideration for all stakeholders and objectives and hopefully without political interference/influence but instead with a common purpose of providing world class healthcare solutions.
Obviously we have different basis for comparison. I was not commenting on any universal health care. (Through I do believe all Americans should have access to some healthcare)
I was actually comparing to a time when we had a family doctor who actually knew us, and our families. Who coordinated our care and sent us to specialists when necessary.
Now a management company dictates to doctors the tests that can be done, and the care that can be given. All with an eye to keeping profits high. It is a plan that does not benefit patients.
I was unaware how bad the system had become because as a healthy person, I rarely went to doctors at all.
I do not pretend to have the answers to healthcare problems.
I was merely expressing my frustration after being quite ill for two years, and finding very little help from the medical system we have.
I completely understand your frustration and I do agree. I did not mean to imply that you were suggesting universal healthcare as a solution and I apologize if my post came across that way. I do not disagree with your assessment of the deficiencies of the current system when patients are struggling to get what they need.
The purpose of my post was more of an effort to educate against misinformation that I see spreading rapidly suggesting that profit must always be bad and public funding is always good.
Well-patient and preventative care is a good example of an initiative that actually reduces the expenses incurred over the long term for care and also benefits the patient.
There does have to be some level of control to ensure that abuse doesn’t occur. If doctors are given free rein with blank checks how can we ensure there will be enough funds to cover care for all?
However today when one has a legitimate need for a procedure, treatment or medication that is outside of the pre-defined approved formula of what they consider standard care, it is far too difficult to fight for coverage. I have no argument there whatsoever and have lived that myself.
But there’s also part of me that is grateful that I have the opportunity to fight for a treatment or medication that would not even exist at all if not for a “for-profit” system that created it in the first place.
No problem with profit. I’m happy to pay for care, if I deem it is care, and not just a protocol that every patient is put through.
I’m so tired of being forced to talk about cholesterol, and mammograms etc, before even addressing why I’m at the doctor.
I think the pharmaceutical companies are OUT of control and their profits are not reasonable. Yes, I know research is expensive.
I am now with an Integrative medical group that is not part of a larger conglomerate of doctors. My care is much better. Sometimes a treatment is not covered by insurance and I have to decide if it’s worth out of pocket. I have been much happier with this group than Kaiser. (Kaiser for me was fine UNLESS I was sick! lol)
The doctors in this group spend about an hour listening and suggesting treatment. It is more of a collaborative relationship which is essential for complicated health issues.
I wish I could say my health issues have been solved, or improved. Not really, but at least I have people who believe me, and who are trying to help.
Fortunately I've had a much more helpful response. Within about the first two minutes, my new doctor informed me that she was a COVID specialist. She is a neurologist - that is why I was seeing her, but in the introduction I gave her I said I also had long-COVID. We immediately switched to treating long-COVID rather than any peripheral neurological issues.