Absolute right to tell doctor NO

DOES NOT APPLY TO PUBLIC HEALTH EMERGENCIES

YOUR BODY, YOUR LIFE

Even if you’re wrong.

I had a surgeon, the other day, refuse to do a minor procedure – WITHOUT EVEN MEETING ME – after talking to the nurse practitioner who examined me, because their ‘guidelines’ stated another procedure HAD TO BE DONE FIRST to rule something out.

Now before anyone gets all worried, it is a minor procedure which would improve my life significantly.

I didn’t say no – I asked for statistics.

Was told they had guidelines.

It is my very real experience in previous cases that ‘guidelines’ are often years out of date, because, as one doctor told me, “It takes time for the research to be incorporated into the guidelines.” Lots of time. A decade and a half in the previous case.

But even that is a red herring

I don’t know what the statistics are in this case, but I’m guessing MOST of the ruling-out procedures are unnecessary. As in, don’t discover anything that needs being attended to in the majority of cases.

In the case of normal reasonably-healthy people, going through a ruling-out procedure is a minor inconvenience, the loss of a day or two of their time, and an allowable use of their medical leave (if they’re working).

FOR DISABLED PEOPLE WITH NO ENERGY, EVERY procedure

carries risks and an amazingly high load of days lost and physical inconvenience, minor and major misery, time, calling in of favors, arranging…

You name it.

And it is very reasonable to 1) ask if something is STRICTLY necessary, and 2) supported by research and statistics which show the procedure is worth the enormous effort it costs that disabled person.

If a restaurant meal is $50 for one person, and $50,000 for another, it is reasonable to ask first whether the second person wishes to pay that much (this is what prices on menus are for, among other things).

Not taking that into account in medical procedures is the equivalent of saying, “If you have to ask, you can’t afford it.”

So you can’t eat it, even if you’re hungry.

The ADA Factsheet states:

The ADA requires that health care entities provide full and equal access for people with disabilities.


This can be done through:

  • Reasonable Modifications of Policies, Practices, and Procedures. Adjusting policies, practices, and procedures, if needed, to provide goods, services, facilities, privileges, advantages, or accommodations.

At the end of the fact sheet there is a feedback form. Where it asks Is the information useful to you? I checked NO.

Where asked How could the usefulness be improved? I answered:

“Reasonable modifications (or changes) to policies, practices, and procedures” does not address RECOMMENDED procedures used to RULE OUT a possibility, when it isn’t a strict requirement, would be much more difficult for the disabled person to satisfy than for a normal healthy person, and is not wanted by the disabled patient – who understands but does not consent to the recommended procedure, and is thus prevented from having a service they DO need and want.

Where asked What are the most important changes we could make? I answered:

Directly address the fact that, for disabled people, things can be MUCH more difficult to do because of the disability itself (which in my case includes very little energy in a day), and it is not fair to insist they meet the same RECOMMENDED but not STRICTLY NECESSARY requirements an able person is presented with.

And where asked What other factsheets do you think we should write? I answered:

How to lower the barriers which prevent a disabled person from getting a necessary service/procedure when these barriers are ONEROUS to a disabled person compared with an able person.

Do I expect any help from the ADA people?

Not really.

The wheels of government move slowly in the best of cases, and there will be pushback and talk about ‘lowering standards’ and interfering with ‘recommendations by doctors and medical societies.’

And, more ominously, ‘disabled people not knowing what is good for them.’

Change would likely take longer than it does to update those guidelines they are so fond of, produced by a medical society, 15 years after the research changes, to CYA those who might be sued if they don’t follow ‘standard procedures.’

I’m pretty sure they were not thinking about the EFFECT of the above on a disabled person with limited capacity – just imagining what it would be like for a person like themselves (rarely disabled) to go through the procedure, say, with an emotional support miniature horse (yes, they are specifically included, but might be excluded if not housebroken).

I’m furious because there is no recourse

This is the only version of the medical procedure I need within my medical services system.

It takes me a lot of energy to even write about it here; the actual recommended but not in my estimation strictly necessary pre-requisite to the procedure I need is one that would take over a week of ALL my time and energy to do – and I’m not sure I could manage its requirements anyway.

Finding an alternate to their clinic is beyond my capabilities.

The minor procedure would improve my life immediately but isn’t going to happen.

And I don’t think I’m going to get anywhere with the ‘feedback request’ from my medical providers – thought I may just send them this post.

As the disabled person

I should not have to fight over things like this, but should be asked my preference without having to go through the stress of fighting the surgeon who hasn’t even met me.

I have wasted enough time and energy on this already.

I hope I can continue to manage the problem.

And I wonder exactly what they think ‘informed consent‘ means when I do NOT consent.

**********

And, if you’re worried, I’m not taking stupid chances – I’m not planning on dying of something preventable.

Why do disabled people have to fight so hard for stupidities like this?

Why isn’t the able world asking how to help?

**********

7 thoughts on “Absolute right to tell doctor NO

  1. Widdershins

    It’s because we’re disposable, in a society that has been conditioned to revere the young and the healthy, and yet paradoxically prefers us to be non-healthy, and easier to ‘control’ … more money to be made that way.

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    1. Alicia Butcher Ehrhardt Post author

      A continuation of millions of tiny interchanges between doctors and their clients over centuries.

      Just because we have to go to them for help, and get it sometimes, they think they know everything.

      And people who are well fear disability more than death – until they become disabled themselves and realize it’s a false dichotomy: we go on, in pain and distress, but very much ourselves – with the same aspirations, goals, and dreams of the rest of humanity. One of the strongest themes of Pride’s Children.

      Liked by 1 person

      Reply
  2. Lloyd Lofthouse

    Why do disabled people have to fight so hard for stupidities like this?
    Why isn’t the able world asking how to help?

    Simple answer. This is medical care in the United States. To get the healthcare you need and want you almost always have to be a billionaire. The rest of us, we are numbers, too, but with no dollar signs in front of them telling the system that we do not count.

    In short, we live in a country where the wealthy demand to be worshiped and treated differently and enough people worship them that they get what they want.

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    1. Alicia Butcher Ehrhardt Post author

      The UK – fully socialized medicine – has similar problems. It’s not the system (though the system bears a huge part of the blame), it’s the doctors who wish to play gods, because otherwise medicine is an art, and not all are artists.

      ADA helps – but you have to push it, and pushing is something that is so exhausting for me, especially when contaminated by stress, that I almost never manage it. I am so grateful to all who have gone before and fought for everything I need – accessible parking… – but it is a system in flux, with many slowdowns while disabled people are suffering NOW.

      The ATTITUDE of the rest of humanity is ‘MAKE ME.’ Not, ‘HOW CAN WE HELP?’

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  3. acflory

    -wince- so all these ‘recommendations’ and ‘guidelines’…are they even related to health or are they ticking boxes in case someone sues somewhere down the line and the insurance company won’t pay out????

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    1. Alicia Butcher Ehrhardt Post author

      They are SUPPOSED to be ‘best practices.’ They are the recommendations of august bodies such as the American Heart or similar, as a whole. Yes, they are the safe place to practice – and probably good for many people.

      But they leave out, for example, the people who can’t take statins (which I will never take, on principle, but that’s me) BECAUSE of the side effects THEY experience.

      It is not my business to change the guidelines – entire industries depend on them and their adherents.

      But it IS my business not to let them hurt ME.

      Liked by 1 person

      Reply
      1. acflory

        Mmm…yes, ‘best practice’ is for that mythical average human. We’ve had some experience with those kinds of meds as well. Let’s just say that the ‘only a tiny percent’ type side-effects happened. 😦
        I wonder if you could contact your lawyer and get /them/ to contact the doctor about signing a disclaimer? I mean, a guideline is just that. There must be circumstances in which it’s ignored?

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