1) Please run for ruler of the world. I want to live in THAT world!
2) I would add to this fantastic description and analysis that marginalized populations are MUCH more likely to be identified as “non-compliant” based on their identities.
3) I have a Master in Public Health and am very good at advocating for myself in healthcare settings. And EVERYTHING you describe here applies to me too.
4) As a person with ME/CFS, with a 19 yo daughter who is early in a similar illness, with a cousin who has an intellectual disability for whom I manage her healthcare, and a 92 yo father, I’m doing this navigational dance for FOUR people.
5) Your statement that the system might actually work to become less of a navigational burden made me tear up. Thank you.
You are TOO KIND!! I also think they should listen to me more (😅) but that’s because I’m literally just reflecting back what patients (like you!) and my own lived experiences as a patient and caregiver have taught me.
It’s shocking and sad that any of this needs to be said in the first place…none the less that we have to FIGHT to be believed that it is a real phenomenon that needs to be urgently addressed.
I'll add a 6) which is that I record every appointment I have, mostly so I can make sure I caught it all (not usually) and sometimes just to be like, no, I'm not exaggerating, it really WAS that bad.
I am 79 yrs old and was a practicing veterinarian for 50 yrs. When I retired I realized how confusing and difficult the field of human medicine was. So I read all I could about human medicine and now lecture to seniors at my senior center about navigating the broken medical system/ I discuss making appointments, primary care, referrals, concierge doctors, patient advocates, ombudsman etc etc. Seniors often have complex problems and co-morbidities and I give them my card and tell to call me free of charge for advice about their medical problems. I love helping people and would like to see others do it also.
Thank you for sharing and thank you for everything you do. This is such a beautiful example of how we can build community-based ways to help each other stay healthy. I love this so much
What you are doing is so necessary. I work in the elder care industry and spend a lot of time with seniors in bad situations simply because they didn't know what their options were. I wish I had more time and energy outside work to advocate like this. Thank you!
I LOVE that this piece was written by a doctor. Thank you.
The fact that I can get a hand-scan at the hospital that gives them my entire medical chart...but I ALWAAAAYYYYYS have to fill out a zillion forms, for anything, ever, chaps the entirety of my exhausted ass. We have the technology. We just refuse to use it.
Watching my sick as balls patient friends try to board planes and travel to doctors, when it would be so much cheaper and easier to 1) loosen rules around telehealth or 2) hear me out, send doctors to patients, chaps what's left of it.
The work of healthcare that is shifted onto patients is staggering. STAGGERING. The only Dr. House figure is ever a motivated and more importantly, RESOURCED patient who works tirelessly to manage their own medical care. And we just do not have the spoons. We're paying for access to tests and drugs, not labor, in far, faaaar too many situations.
Thank you so much for bringing up the fact that the technology to lift the burdens off of patients EXISTS…but patients are denied the benefits of that technology. Instead, the benefit goes to administrators / the private sector.
I often wonder about the flip side of this. What about the struggle of doctors to access care for their patients? In my illness (ME/CFS/chronic pain) so many bail on the normal health system to run renegade clinics. Almost all my favorite clinicians have bailed on insurance because, as one said, "my mental health can no longer take it."
I’m going through a time…(big sigh)…I need levocarnitine (Carnitor) for a carnitine deficiency…the insurance company has denied it 3 times. They claim it’s an OTC drug. I went into acute metabolic encephalopathy 5 days ago, 2 days later, they denied the prior authorization again, claiming I could “get the ingredients over the counter”. I appealed secondarily through CMS, filed a grievance with Medicare, and barring the denial of the secondary appeal, I think they want me to meet with an administrative law judge. I’m not sure what options I have left at this point. I need the medication. I just need a formulary exception for good cause, you know? Fortunately, I have about 28 days left. Why does it have to be this hard? I have medical documentation.
Oh no!!! I am so so sorry you are going through that. The (very rational) things that insurance companies deny boggle my mind.
The fact that the want to fight you about paying for this “OTC” medication but will foot the bill for your ICU stay…and they don’t see how completely illogical that is…it honestly makes me so angry.
I am praying for your continued strength , even though you should never have to have it. Take care of yourself my friend!
This was an excellent essay! I've been an inpatient pharmacist for all of my career so I often take for granted all patients go through as an outpatient which which lands them in the hospital as an inpatient.
I’m outpatient now but in residency, I LOVED that while patients were inpatient, I had (much higher) ability to get their basic needs met.
I personally feel about 1/3 of the admissions could be prevented if we had enough outpatient axillary support for patients—it’s sad. The hospital is usually thought of as the one place “I’ll get care on matter what”.
Outpatient is dominated by what insurance companies want.
I know this outpatient to inpatient phenomenon all too well. I'm a pediatric pharmacist and the number of complex care children we have to admit simply because their families lack the resources and support to maintain their care is alarming. It is common that we'll discharge a kid only to have to re-admit them 3-4 days later because a parent/guardian was confused about how to give medication and accidentally gave the wrong dose or got home and struggled with line care for a TPN-dependent child. The outpatient obstacle to recover for patients are endless.
This made me burst into tears. Decades of trying to get reasonable, sustainable help for multiple chronic illnesses while being a single mother has often felt like running one gauntlet after another. Just to know that there’s AT LEAST ONE PERSON IN the medical community that understands what the patient goes through is a comfort.
We should not have to take care of so much of the admin for you. Life’s already pretty hard for us.
Now I’m crying with you Rose! Thank you so much for sharing that. Please know that I see you and…you're not imagining the gauntlet. Know that it was never a reflection of your worth as a patient or a mother.
I pray that you stay strong, and know that you are NOT fighting alone
This also had me bursting into tears. No-one has ever got this before. The validation is decades overdue. Thank you for writing this!
One thing I'd like to add: whilst doing the endless admin between broken and fragmented systems, you're forced to repeat your medical history and story. And in doing so, you'll be repeating things other doctors have told you or covered already. But the catch-22 is that if you say it too confidently, or use medical terminology to save time explaining from scratch, or use the medication names correctly, then you're accused of consulting "Doctor Google" and not believed. The system concurrently forces patients to advocate and to do its own admin, whilst also pathologising you and labelling you as having health or other "anxiety" for doing it! Either you're not informed enough, or you're too informed. There's no in between, and there's no way of knowing where each professional's expectations are before you walk in. Either way, you're coming out pathologised and labelled as non-compliant / hypochondriac... or both!! I'm tired...
It took me the past several years of navigating this cruel system before getting appropriate treatment and the correct diagnoses. I am stuck in a full-time job of medical appointments and suffering through this system. But, it nearly broke me in the process, and I worked in healthcare before I became disabled, so I had knowledge and skills a lot of people don’t.
I couldn’t agree more with the points you bring up and how the medical field has really placed too much of a burden onto the patient. We need to provide care again.
Oh man, try being on the spectrum and constantly being labeled noncompliant. The amount of energy that I have to do to advocate for the incremental care that works for my nervous system is a nightmare.
What I’ve also come to learn is that these systems are intentionally designed to strip you of your dignity.
I went to the Gastro yesterday and they scheduled a scope. I need small steps, so I asked well let’s make it diagnostic then discuss the results. And they were like no if we see anything we fix it along the way and I was like that doesn’t work. So I went into a complete meltdown for about two days freaked out about protecting myself. And then I just sent them a note and said I need to find a new doctor. Yet I’m gonna look noncompliant on the disability because I’masking for switching things around
More often than not I literally have to figure out the diagnosis myself, do the research, because the practitioners are unable to do so. And I have to be on the constant lookout for errors in prescriptions (got overdose on one med 10x for 2 years, and more recently started at 2x the customary start dose) and errors in imaging reports. It’s beyond ridiculous , I’m not even a doctor.
This is SPOT ON! Even when the patient does all the work, it’s a no win situation for patients. This has been my experience in my many years of dealing with Allopathic Healthcare Systems.
Being labeled “non-compliant” or as I have experienced having it labeled “refused to take…”
without taking into account the reason the patient is not taking it and radical concept, respecting it.
There’s a couple more stressful things especially patients with chronic illness/disease experience which is; we are not believed, especially women (who are 75% of chronic illness patients). This only makes us sicker as we do not receive the services we need and we may stop going to medical appointments altogether as we are invalidated and traumatized when we do. And they put all kinds of negative & faulty things in our records.
If one is a Domestic Violence, Sexual Assault or any kind of abuse Survivor, one has to deal with lack of trauma training and more trauma. Providers often wrongly pathologize trauma Survivors and impede their care, re-traumatize. The best healthcare I have received is OUT of POCKET and outside the mainstream system. Holistic MDs, Naturopaths, Chiropractors, etc. Of course, that’s impractical as it costs $$$$$$$. I do not expect the Allopathic Healthcare system in the U.S. to heal me. My strategy is just try to obtain the most essential things from it and have low expectations. Thank you for writing this!!!!!!!!!!!
In reference to the comment about doctors expecting the patient to show up pre-diagnosed, and pre-educated, In my experience therapists are starting to behave the same way. The last two therapists I have worked with (post covid) seemed completely comfortable charging for an hour of me doing therapy on myself. "How was your week", I explain any issues I have had, then sit in the most uncomfortable silence while they wait for me to chime in with my own possible solutions just to end the awkwardness. They don't even bother to go through any exercises in the appointment anymore, they just email a worksheet. They don't take notes or remember anything about you from week to week, so I decided to start making notes to get us up to speed at the top of each appointment. I had one therapist who told me to quit my job, then when I couldn't do that "well you musn't want to get better"...what? Told me to go non-contact with my parents and then when I pushed back (because they are elderly and need me) said "I don't know what you want me to say". My current therapist actually asked me what she should list as my diagnosis on the intake. This was after doing pages of paperwork just to get the appointment scheduled. It feels like if you have any mental health issue that can't be treated on your own time with mindfulness worksheets, then you are out of luck.
To the medical side, I have psoriatic arthritis and I am sure anyone in the US who has been prescribed a biologic understands that it is a part-time job just to get this approved, filled, and (partially) paid for EVERY SINGLE MONTH. They cost $6k - $7k out of pocket without special "coupon programs" which usually only last for 5 -6 months, so just when the meds start working SURPRISE! Now you have to find alternate funding, if that even exists. I got so tired of it, I stopped taking the medicine and my rheumatologist dropped me for being 'non-compliant'. I did not find out until 5 years (and several obliterated joint spaces) later that there were many other options for medication. I suppose that is something I should have educated myself on instead of expecting a rheumatologist to educate me.
It is so amazing to read this from an actual doctor.
I am continually bewildered by the number of people in the medical profession that I encounter who don’t understand that it’s difficult to fit all these medical appointments into my workday! I would think that would be a well-known and obvious problem for lots of people. I often get a particular doctor’s office calling to ask if I can come in early and my answer is always no. Because I had to arrange a ride to pick me up at a specific time, and make this work with my work schedule. And as you note, this is only one of many logistical issues!
I've done my homework. I've done hours and hours of research. I come prepared. I present my findings humbly to my physician (including references of journal articles) and am told not to "let Doctor Google" convince me I am sick. There is no winning in this system.
Dr. B, this is just wonderful! I would like to add: @#%$! medical practice portals. Why can't all docs agree to all use the same portal, like MyChart? One password!!
1) Please run for ruler of the world. I want to live in THAT world!
2) I would add to this fantastic description and analysis that marginalized populations are MUCH more likely to be identified as “non-compliant” based on their identities.
3) I have a Master in Public Health and am very good at advocating for myself in healthcare settings. And EVERYTHING you describe here applies to me too.
4) As a person with ME/CFS, with a 19 yo daughter who is early in a similar illness, with a cousin who has an intellectual disability for whom I manage her healthcare, and a 92 yo father, I’m doing this navigational dance for FOUR people.
5) Your statement that the system might actually work to become less of a navigational burden made me tear up. Thank you.
You are TOO KIND!! I also think they should listen to me more (😅) but that’s because I’m literally just reflecting back what patients (like you!) and my own lived experiences as a patient and caregiver have taught me.
It’s shocking and sad that any of this needs to be said in the first place…none the less that we have to FIGHT to be believed that it is a real phenomenon that needs to be urgently addressed.
Seconding the motion raised in point 1.
I'll add a 6) which is that I record every appointment I have, mostly so I can make sure I caught it all (not usually) and sometimes just to be like, no, I'm not exaggerating, it really WAS that bad.
I am 79 yrs old and was a practicing veterinarian for 50 yrs. When I retired I realized how confusing and difficult the field of human medicine was. So I read all I could about human medicine and now lecture to seniors at my senior center about navigating the broken medical system/ I discuss making appointments, primary care, referrals, concierge doctors, patient advocates, ombudsman etc etc. Seniors often have complex problems and co-morbidities and I give them my card and tell to call me free of charge for advice about their medical problems. I love helping people and would like to see others do it also.
Thank you for sharing and thank you for everything you do. This is such a beautiful example of how we can build community-based ways to help each other stay healthy. I love this so much
What you are doing is so necessary. I work in the elder care industry and spend a lot of time with seniors in bad situations simply because they didn't know what their options were. I wish I had more time and energy outside work to advocate like this. Thank you!
I LOVE that this piece was written by a doctor. Thank you.
The fact that I can get a hand-scan at the hospital that gives them my entire medical chart...but I ALWAAAAYYYYYS have to fill out a zillion forms, for anything, ever, chaps the entirety of my exhausted ass. We have the technology. We just refuse to use it.
Watching my sick as balls patient friends try to board planes and travel to doctors, when it would be so much cheaper and easier to 1) loosen rules around telehealth or 2) hear me out, send doctors to patients, chaps what's left of it.
The work of healthcare that is shifted onto patients is staggering. STAGGERING. The only Dr. House figure is ever a motivated and more importantly, RESOURCED patient who works tirelessly to manage their own medical care. And we just do not have the spoons. We're paying for access to tests and drugs, not labor, in far, faaaar too many situations.
Thank you so much for bringing up the fact that the technology to lift the burdens off of patients EXISTS…but patients are denied the benefits of that technology. Instead, the benefit goes to administrators / the private sector.
I often wonder about the flip side of this. What about the struggle of doctors to access care for their patients? In my illness (ME/CFS/chronic pain) so many bail on the normal health system to run renegade clinics. Almost all my favorite clinicians have bailed on insurance because, as one said, "my mental health can no longer take it."
I’m going through a time…(big sigh)…I need levocarnitine (Carnitor) for a carnitine deficiency…the insurance company has denied it 3 times. They claim it’s an OTC drug. I went into acute metabolic encephalopathy 5 days ago, 2 days later, they denied the prior authorization again, claiming I could “get the ingredients over the counter”. I appealed secondarily through CMS, filed a grievance with Medicare, and barring the denial of the secondary appeal, I think they want me to meet with an administrative law judge. I’m not sure what options I have left at this point. I need the medication. I just need a formulary exception for good cause, you know? Fortunately, I have about 28 days left. Why does it have to be this hard? I have medical documentation.
Oh no!!! I am so so sorry you are going through that. The (very rational) things that insurance companies deny boggle my mind.
The fact that the want to fight you about paying for this “OTC” medication but will foot the bill for your ICU stay…and they don’t see how completely illogical that is…it honestly makes me so angry.
I am praying for your continued strength , even though you should never have to have it. Take care of yourself my friend!
This was an excellent essay! I've been an inpatient pharmacist for all of my career so I often take for granted all patients go through as an outpatient which which lands them in the hospital as an inpatient.
Thank you so much for reading Caroline!
I’m outpatient now but in residency, I LOVED that while patients were inpatient, I had (much higher) ability to get their basic needs met.
I personally feel about 1/3 of the admissions could be prevented if we had enough outpatient axillary support for patients—it’s sad. The hospital is usually thought of as the one place “I’ll get care on matter what”.
Outpatient is dominated by what insurance companies want.
You're very welcome Brittani!
I know this outpatient to inpatient phenomenon all too well. I'm a pediatric pharmacist and the number of complex care children we have to admit simply because their families lack the resources and support to maintain their care is alarming. It is common that we'll discharge a kid only to have to re-admit them 3-4 days later because a parent/guardian was confused about how to give medication and accidentally gave the wrong dose or got home and struggled with line care for a TPN-dependent child. The outpatient obstacle to recover for patients are endless.
Because it is work, it is often hard effing work, and it is often unrewarding.
This made me burst into tears. Decades of trying to get reasonable, sustainable help for multiple chronic illnesses while being a single mother has often felt like running one gauntlet after another. Just to know that there’s AT LEAST ONE PERSON IN the medical community that understands what the patient goes through is a comfort.
We should not have to take care of so much of the admin for you. Life’s already pretty hard for us.
Now I’m crying with you Rose! Thank you so much for sharing that. Please know that I see you and…you're not imagining the gauntlet. Know that it was never a reflection of your worth as a patient or a mother.
I pray that you stay strong, and know that you are NOT fighting alone
Thank you 💚
This also had me bursting into tears. No-one has ever got this before. The validation is decades overdue. Thank you for writing this!
One thing I'd like to add: whilst doing the endless admin between broken and fragmented systems, you're forced to repeat your medical history and story. And in doing so, you'll be repeating things other doctors have told you or covered already. But the catch-22 is that if you say it too confidently, or use medical terminology to save time explaining from scratch, or use the medication names correctly, then you're accused of consulting "Doctor Google" and not believed. The system concurrently forces patients to advocate and to do its own admin, whilst also pathologising you and labelling you as having health or other "anxiety" for doing it! Either you're not informed enough, or you're too informed. There's no in between, and there's no way of knowing where each professional's expectations are before you walk in. Either way, you're coming out pathologised and labelled as non-compliant / hypochondriac... or both!! I'm tired...
It took me the past several years of navigating this cruel system before getting appropriate treatment and the correct diagnoses. I am stuck in a full-time job of medical appointments and suffering through this system. But, it nearly broke me in the process, and I worked in healthcare before I became disabled, so I had knowledge and skills a lot of people don’t.
I couldn’t agree more with the points you bring up and how the medical field has really placed too much of a burden onto the patient. We need to provide care again.
Oh man, try being on the spectrum and constantly being labeled noncompliant. The amount of energy that I have to do to advocate for the incremental care that works for my nervous system is a nightmare.
What I’ve also come to learn is that these systems are intentionally designed to strip you of your dignity.
I went to the Gastro yesterday and they scheduled a scope. I need small steps, so I asked well let’s make it diagnostic then discuss the results. And they were like no if we see anything we fix it along the way and I was like that doesn’t work. So I went into a complete meltdown for about two days freaked out about protecting myself. And then I just sent them a note and said I need to find a new doctor. Yet I’m gonna look noncompliant on the disability because I’masking for switching things around
That works for my neurodiversity
More often than not I literally have to figure out the diagnosis myself, do the research, because the practitioners are unable to do so. And I have to be on the constant lookout for errors in prescriptions (got overdose on one med 10x for 2 years, and more recently started at 2x the customary start dose) and errors in imaging reports. It’s beyond ridiculous , I’m not even a doctor.
This is SPOT ON! Even when the patient does all the work, it’s a no win situation for patients. This has been my experience in my many years of dealing with Allopathic Healthcare Systems.
Being labeled “non-compliant” or as I have experienced having it labeled “refused to take…”
without taking into account the reason the patient is not taking it and radical concept, respecting it.
There’s a couple more stressful things especially patients with chronic illness/disease experience which is; we are not believed, especially women (who are 75% of chronic illness patients). This only makes us sicker as we do not receive the services we need and we may stop going to medical appointments altogether as we are invalidated and traumatized when we do. And they put all kinds of negative & faulty things in our records.
If one is a Domestic Violence, Sexual Assault or any kind of abuse Survivor, one has to deal with lack of trauma training and more trauma. Providers often wrongly pathologize trauma Survivors and impede their care, re-traumatize. The best healthcare I have received is OUT of POCKET and outside the mainstream system. Holistic MDs, Naturopaths, Chiropractors, etc. Of course, that’s impractical as it costs $$$$$$$. I do not expect the Allopathic Healthcare system in the U.S. to heal me. My strategy is just try to obtain the most essential things from it and have low expectations. Thank you for writing this!!!!!!!!!!!
In reference to the comment about doctors expecting the patient to show up pre-diagnosed, and pre-educated, In my experience therapists are starting to behave the same way. The last two therapists I have worked with (post covid) seemed completely comfortable charging for an hour of me doing therapy on myself. "How was your week", I explain any issues I have had, then sit in the most uncomfortable silence while they wait for me to chime in with my own possible solutions just to end the awkwardness. They don't even bother to go through any exercises in the appointment anymore, they just email a worksheet. They don't take notes or remember anything about you from week to week, so I decided to start making notes to get us up to speed at the top of each appointment. I had one therapist who told me to quit my job, then when I couldn't do that "well you musn't want to get better"...what? Told me to go non-contact with my parents and then when I pushed back (because they are elderly and need me) said "I don't know what you want me to say". My current therapist actually asked me what she should list as my diagnosis on the intake. This was after doing pages of paperwork just to get the appointment scheduled. It feels like if you have any mental health issue that can't be treated on your own time with mindfulness worksheets, then you are out of luck.
To the medical side, I have psoriatic arthritis and I am sure anyone in the US who has been prescribed a biologic understands that it is a part-time job just to get this approved, filled, and (partially) paid for EVERY SINGLE MONTH. They cost $6k - $7k out of pocket without special "coupon programs" which usually only last for 5 -6 months, so just when the meds start working SURPRISE! Now you have to find alternate funding, if that even exists. I got so tired of it, I stopped taking the medicine and my rheumatologist dropped me for being 'non-compliant'. I did not find out until 5 years (and several obliterated joint spaces) later that there were many other options for medication. I suppose that is something I should have educated myself on instead of expecting a rheumatologist to educate me.
It is so amazing to read this from an actual doctor.
I am continually bewildered by the number of people in the medical profession that I encounter who don’t understand that it’s difficult to fit all these medical appointments into my workday! I would think that would be a well-known and obvious problem for lots of people. I often get a particular doctor’s office calling to ask if I can come in early and my answer is always no. Because I had to arrange a ride to pick me up at a specific time, and make this work with my work schedule. And as you note, this is only one of many logistical issues!
I've done my homework. I've done hours and hours of research. I come prepared. I present my findings humbly to my physician (including references of journal articles) and am told not to "let Doctor Google" convince me I am sick. There is no winning in this system.
Dr. B, this is just wonderful! I would like to add: @#%$! medical practice portals. Why can't all docs agree to all use the same portal, like MyChart? One password!!