(potentially triggery for talk of medical stuff + death + grieving)

[afuna]

I originally meant to talk about combined knitting, which I've been playing with over the weekend, but instead you get this.

This has been building up for a long time now. Before you click through, I have to warn you that I'm bitter and angry and cynical, and this isn't happy reading. It isn't even productive ranting, and if you only met me recently, this may not make sense to you. I tried to explain, but the more I tried to explain, the more detached I started to feel, so I deleted that part half-done.

Please don't feel that you have to read this: I just feel like I have to write it.



I'm trying to find out what rights patients have in other countries. (Did you know that the Philippines has a patient's bill of rights stuck in the Senate, from 2007? I didn't know it either! I fully expect it to be defeated by the hospitals because they're the ones who actually, you know, have money, so I don't know whether to be happy that there's even something there at all or angry because I doubt it will ever lead anywhere. Or maybe it's been defeated already but the website just hasn't been updated. Or maybe it passed but nobody knows.

Did you also know that there's no medical malpractice in the Philippines? Apparently it would increase insurance rates for doctors, which would make them jack up their fees so that none of their patients could afford them. Alternatively, it would scare all the nice doctors away, to work in other countries where the risks aren't as great.)


It's years too late to be doing this, way too late for anything to be done, but there's a lot of stuff that's bringing back old things today, and somehow I need to know. Or want, maybe. "Need" implies that I'd be able to take the information and do something with it.

What I'm finding fills me with despair. Or well, the lack of what I'm finding anyway. I can't actually find a country with an actual active law for patients' bill of rights: all I can turn up are search results that talk about how so-and-so doesn't have an actual law, or such-and-such are thinking hard about these things BUT.

Surprise surprise, I know this won't shock many of you.

I'm bitter, I'm sorry. I'm cryptic; I'm sorry for that too. I'm not trying to be, I just need to say something before I explode.



I'm looking for patients' bills of rights. I'm looking for places where, if something went wrong, you'd have:
a.) sure access to medical records
b.) some way to file a grievance


Do you know if where you live has that? And, if you think you know, because I thought I knew (I thought here was somehow safe!), are you sure? If you're not sure now, please try to be. Afterwards is too late. (Afterwards comes too quickly).


We tried to pursue it you know. We tried to get records and documents and proof. You can't file anything without proof, right, but all the proof was in the medical records, and the medical records were with the hospital, and the hospital wouldn't release the records unless the courts compel them, and the courts won't compel anyone unless you file, and you can't file without proof.

My mom pleaded; a year later the hospital released the records to us, but also let us know in not so many words that they only let us have the records because they felt like it. I mean fucking hell, no matter where we turn, we don't have any power.


The records are strange. Row after row of too-neat too-aligned handwriting, made with the same pen, like what happens when a teacher makes a student sit down and write a hundred times, I will not kill my patients.
I will not kill my patients.
I will not kill my patients.
I will not kill...


I've probably just maligned thousands of doctors and nurses who have accidentally lost a patient. To those, I'm sorry. But to the ones who just weren't there, I'm not sorry at all. I don't have any power. My anger is all I have.



We tried. Nothing happened. I feel guilty: maybe we just didn't try hard enough. Maybe we're too stupid and naive. Maybe if we were rich, or had political clout, we'd have had a chance. Maybe we were wrong.

I don't believe that last one, though, except in brief moments when I want to give up. (I've given up hope that anything will ever happen, but I don't really want to give up. The tiny distinction between the two is what makes me angry at myself for ever being an optimist.)


I hate the legal system. I hate the medical system. I want away from here, but I'm afraid that it will be the same no matter where I go, so where else can I go? I'm afraid that it will be better in other places, so why didn't we go in the first place when it was early enough to make a difference? I'm afraid that it will be better and I will go and abandon everyone and everything here because elsewhere is easier...




It would be easier if things just did not go wrong in the first place.


What went wrong for us is that my brother was operated on on a Friday. His surgeon didn't come to check back on him that weekend. He took a bad turn. My mom pleaded; no one came.


Maybe it was our fault? We should have known? He shouldn't have been so unlucky and gotten sick on a weekend? Maybe if we'd scheduled his post-op infection for next Monday, the doctor would have come. Or, well...

(You can tell where I'm not serious I hope. I hope, I hope, because I sure as hell can't tell how much is me being sarcastic, and how much is me being angry at the system, and how much is me being angry at myself.)


I don't know the full story of what happened here but what I do know is this: the doctor was in on Monday and my mom tried to get her to come look in the morning as soon as the doctor arrived. Late afternoon, the doctor finally grudgingly came, and scheduled a test but the tests couldn't be run until Tuesday, and then

Delay delay delay, more delay. People have to wait for delays. Infections do not. And when infections aren't so kind as to wait for delays, then people don't have time either.


So.


Do you know what else sucks? Even though we'd rather not, even though it's been proven to us that when something goes wrong there's nowhere we can turn, we still need to go to this hospital. A lot of doctors only practice in St Luke's. A lot of facilities are only available at St Luke's. I hate that because of its size and money and popularity, my going would only help them earn money, and my not going would only hurt me.

Fucking hell. Stupid defiance. Cut off your nose to spite their face (and they'd reattach your nose and charge you a fee for the hospital room).

Stupid powerlessness. Stupid ever trusting in hope.

Bite me.

Comments

[kateshort]

*hug* I'm very sorry for your continuing grief and pain.

re: the too-neat records; I think that many docs write down scratches or use a mini-recorder during the actual process, and then transcribe or copy over the information onto the "official" records.

[afuna]

*hugs back gratefully*

Thank you, and thank you for that information.It makes me feels less, I dunno, less despairing, I guess.

[vlion]

The USA has medical malpractice as a particular legal recourse. I'm not sure if we have a patients bill of rights.

not that it's much help in the Philippines.

The legal strictures have be very carefully done with medical malpractice or the cost of medicine will go up. That's part of the problem right now in the USA healthcare system. We can sue them for malpractice for a lot; they have insurance; the insurance costs all the doctors a lot; we get the cost of the premium.

HTH

[pauamma]

That's probably a state matter, not federal.

[afuna]

It doesn't help in the Philippines yeah, but it does help inasmuch as... I mean it's not just me thinking that there should be something like this, you know? And in fact there are places where there are actually things like these and it just... helps, somehow.

Though ugh, yeah. Cost does seem to be a problem, especially here where poverty is so rampant, and it's not fair (maybe not even possible?) to ask the patients to shoulder the cost of additional insurance. On the other hand, it's also not fair to have patients basically have no where to turn just because they're born in a poor country.

Guh ANYWAY. Anyway, I just wanted to say thank you for commenting and for the information <3

[jadelennox]

I'm sure if you're actually asking, but in case you are, Massachusetts recently instituted a patients' rights statute. Apparently nobody has actually been using the grievance process, although I would argue they haven't done a good job of publicizing the rights to us. But it's there.

Also, to the extent it would be welcome, *hugs* and shared rage and all. ♥

[afuna]

I was kinda *nods* And thank you <3

[shinsetsu]

Your experience sounds horrendously unprofessional and criminally negligent. In the states, patients have a Patient Bill of Rights. But in a hospital, if you have surgery, and your doctor is not available and something is going wrong with you, the hospital has a doctor on duty to attend to you. It may not be your dr, but at least it's a dr. You also have the rights to your medical records if you request them, although you may have to pay to have them photocopied, which can cost a lot with a lifetime illness or congenital defect. There are bodies to file grievances with, but as you might expect, some of these are not the most objective and tend to side with the medical establishment whilst giving the patient the illusion that they are being fair. Suing for malpractice is always an option, and it happens quite frequently here. I have seen doctors literally get away with murder, however, because as you say, they have the power. Knowledge by the patient is the best weapon, at least here. Doctors are not gods and are very narrowly focused. Many of them are unapproachable and have the attitude that they know all and you know nothing. It's very sad because medicine is not an exact science.

That your brother's nurses did not alert a doctor to his worsening condition and get someone there immediately is unbelievable.

It sounds like to me that the government in your country is cowed by the doctors from taking action to control this kind of situation you describe.

I'm sorry for your loss Afuna. :( {{{{{♥}}}}}

[afuna]

We had doctors in other fields but not one matching the surgeon's :(

There are bodies to file grievances with, but as you might expect, some of these are not the most objective and tend to side with the medical establishment whilst giving the patient the illusion that they are being fair

Yeah, that's pretty much the same bind we're in here.

And thank you ♥ it makes me feel I DUNNO less bleak that I'm not the only one angry.

[shinsetsu]

You might consider gathering a grass-roots group of people who experience similar treatment and getting them together online even to provide support for each other and possible lobbying muscle for change. Maybe?

[vass]

I'm so sorry. Rage on. I'm listening.

a.) sure access to medical records

We have the Freedom of Information Act for public health, and the Health Records Act of 2001 for private.

b.) some way to file a grievance

I could complain to the Ombudsman. I'm not sure what this would achieve, but it would go on the record.

[jeshyr]

For completeness, since I am in the same place as you and looked it up because of this post and now I'm better informed:

Patient's Rights In Victoria and Australia:
http://www.health.vic.gov.au/patientcharter/

Extra ones for mental health in Victoria:
http://www.health.vic.gov.au/mentalhealth/patientrights/downloads.htm

Every hospital I've been in lately has given new patients booklets with this stuff in them on admission although I'm not sure whether that's actually required or just them being sensible and sane. It's definitely reassuring.

There is also 24/7 access to a patient advocate in hospitals (public ones, at least?) so if you are really unhappy you can ask for them and their job is to stand up for you basically. If there is not one available I believe the nurse in charge has to act as patient advocate until one is around. Have never had to use them while in hospital so I can't say for sure how this works, but when I made use of one to help me understand how to get my records they were great.

[afuna]

♥♥♥

*follows links, reads up*

[afuna]

Thank you <3 (And thank you especially for the information)

[shinsetsu]

This is particularly for California:

http://www.calpatientguide.org/
http://www.ehow.com/facts_6802586_patient_s-bill-rights-california.html

As you can see, these explain things that have been in effect for quite some time.

[afuna]

Thank you for the links <3

[shinsetsu]

Afuna, having made those other two comments, though, I would just like to say that you and your family did what you could do under the circumstances given the time and place you were in. If you find a medical wonderland anywhere else now, how could that have helped you then? It's my opinion even with patient rights that unless you have the money and clout, you pretty much get railroaded a lot of the time. And even in the states, if you don't have the money, you don't get the care. People who say otherwise are mistaken.

[afuna]

Nothing I do will ever change what happened back then, but I see one of two choices:

I move to a different country, one where I an my loved ones have a better chance at a better life

or

I find out what is out there and help change what is here

I hate both choices passionately, but I feel like I need to know somehow, because otherwise it's just me dreaming of things that are impossible. The responses so far have me feeling less that I'm asking the impossible and more that maybe change is possible and I just.

I dunno. I'm sorry, I'm rambling.

[aveleh]

*hugs*

[afuna]

♥

[ninetydegrees]

Fu, I'm so sorry for your and your family's loss. I can't imagine how powerless, and furious and sad you must feel. Just *hugs*

In France, most laws concerning healthcare are grouped into a code, fully accessible in public libraries and the Internet. It defines patients' rights, legal and illegal practices, laws concerning medication, research, transplants, and also include ethics codes among many other things.
Patients have the right to access their medical records at any moment. You can sue any professional/institution if you think they've done a mistake or have been negligent. It doesn't mean these things don't happen. They do, especially since staff is now stretched thin in public hospitals. Suing may not be easy, may not lead to anything, but at least the possibility is there.

[starlurker]

I'm sorry that this grief and pain never seems to stop. I hope it eases soon.

[azurelunatic]

*reads this*

[exor674]

*cuddles you and never lets go till you feel better!!!!!*
<3333333333333333333333333333333

I'm not personally sure on the law for medical records for a deceased party here, but as someone else said, yeah -- The relevant law seems to be state-level, but at least in Colorado, the most you have to do here is fill out a request form, and possibly pay a reasonable fee per page for copying time. And except for psychological evaluations, they *have* to give you the records, and they have to send them within some reasonable time frame.

http://patients.about.com/od/yourmedicalrecords/a/getmedrecords.htm ( seems correct on a quick skim )

I'm not sure on a state level patient bill of rights, but certain hospitals seem to have them:

http://www.stanthonycentral.org/body.cfm?id=345
http://www.bouldermedicalcenter.com/legal/patientbillofrights.php

And this seems to be right for what kinda rights you have:

http://ihcrp.georgetown.edu/privacy/stateguides/co/co.pdf

[jeshyr]

I wanted to say I'm sorry you are feeling so awful and that I can't do anything, even offer a proper hug, because you are there and I am here. I hear your anger and grief and pain and I care so very much about you (and your family) and I wish I could help.

And also, nowhere is perfect in terms of medical care but I am insanely lucky and was born here and things are pretty darn good. What vass put is my stuff FWIW.

And I love you. *mega huge virtual hugs with bonus kitty*

[starshadow_rivaulx]

*hugs*

There are no words for it. Finding a good doctor is too much like playing Russian roulette for anyone's peace of mind.

But given the hospital in question - I can't make my mind wrap around the idea that there was no duty doctor who could look at your brother and then consult with the attending, even over the phone to get authorization for treatment. My experience has always been that duty nurses/doctors have always taken note of patient's condition - contacted attending/co-attending for course of treatment if I had any questions, and followed any instructions given.

My heart aches for you and yours. *more hugs*

[synecdochic]

*hugs*

No one should have to go through that, ever. Doctors should fix things. I'm so sorry.

[murklins]

Ugh, I don't know what to say. *hugs*