What decisions would you want if incapacitated?
October 21, 2020 12:50 PM Subscribe
I am doing the complicated work of writing up a detailed healthcare proxy for myself. I need assistance describing "reasonable measures" for situations involving mental disability as well as general things people often miss on their own forms. I'm curious what advanced medical researchers/cutting edge practitioners would write up for their peers to review.
After a recent health scare, I've become aware that it is really important for me to have a health care proxy who is familiar with my desires not just around resuscitation but post-stroke/traumatic brain injury/etc neurological care should I be unable to do so.
I'm in technology and have a pretty sharp mind. I have a family history of dementia, Alzheimer's, and other conditions. I intend to be screened regularly in terms of cognitive function.
I know the brain is an amazing organ and after stories over the past few years about coma patients being awoken by administration of sleep medications, atypical stroke recoveries, etc, I want to make sure that I receive the best neurological care possible in the event of something going sideways. One of the questions on my healthcare proxy form is: "I direct my health care agent to make health care decisions
in accordance with the following limitations and/or instructions (attach additional pages
as necessary):"
I know, for instance, that I am OK with and want to give consent for experimental or cutting-edge treatments. I want to put into words things like "I want you to use CPC-E and not the modified rankin scale for assessing my neurological state", "I'm comfortable with these resuscitation and life support mechanisms", etc. If you're in the medical field (especially neurology), familiar with the cutting edge, what are things you might put on your proxy that normal people less medically astute would not other than "send me to Johns Hopkins and not a lesser neurological ward"?
I live in North Carolina if this makes any difference.
You are not my doctor and this is not medical advice.
After a recent health scare, I've become aware that it is really important for me to have a health care proxy who is familiar with my desires not just around resuscitation but post-stroke/traumatic brain injury/etc neurological care should I be unable to do so.
I'm in technology and have a pretty sharp mind. I have a family history of dementia, Alzheimer's, and other conditions. I intend to be screened regularly in terms of cognitive function.
I know the brain is an amazing organ and after stories over the past few years about coma patients being awoken by administration of sleep medications, atypical stroke recoveries, etc, I want to make sure that I receive the best neurological care possible in the event of something going sideways. One of the questions on my healthcare proxy form is: "I direct my health care agent to make health care decisions
in accordance with the following limitations and/or instructions (attach additional pages
as necessary):"
I know, for instance, that I am OK with and want to give consent for experimental or cutting-edge treatments. I want to put into words things like "I want you to use CPC-E and not the modified rankin scale for assessing my neurological state", "I'm comfortable with these resuscitation and life support mechanisms", etc. If you're in the medical field (especially neurology), familiar with the cutting edge, what are things you might put on your proxy that normal people less medically astute would not other than "send me to Johns Hopkins and not a lesser neurological ward"?
I live in North Carolina if this makes any difference.
You are not my doctor and this is not medical advice.
I'm a neurologist. Honestly, I would avoid being overly specific on a HCPOA or advanced directive. The science changes. If you are ok with being a clinical trial subject, put that for sure, but details like CPCE vs mRS are irrelevant. Those are for people who have recovered to the point of discharge; if you are recovered, your HCPOA no longer applies as you can state your own preferences. For a chronic illness like dementia, acute care scales aren't valid anyway. If you're in a trial, they will have their own scales.
Being overly specific in an advance directive can also hamstring your decision makers and/or doctors when it comes to your actual care. I can't give you examples because of HIPAA, but trust me on this one.
I definitely would not put something like "send me to XYZ Medical Center" -- those reputations are built on either the "genius faculty" model, and genius faculty die, retire, or move all the time. Hopkins, for instance, is still riding on the coattails of William Osler, who died a century ago. Some smart people there for sure, but the last "cutting edge" thing I can think of that came out of there was the Blalock-Thomas-Taussig shunt in the 1940s.
posted by basalganglia at 1:42 PM on October 21, 2020 [10 favorites]
Being overly specific in an advance directive can also hamstring your decision makers and/or doctors when it comes to your actual care. I can't give you examples because of HIPAA, but trust me on this one.
I definitely would not put something like "send me to XYZ Medical Center" -- those reputations are built on either the "genius faculty" model, and genius faculty die, retire, or move all the time. Hopkins, for instance, is still riding on the coattails of William Osler, who died a century ago. Some smart people there for sure, but the last "cutting edge" thing I can think of that came out of there was the Blalock-Thomas-Taussig shunt in the 1940s.
posted by basalganglia at 1:42 PM on October 21, 2020 [10 favorites]
There’s an organization (non-profit) called “Five Wishes”, which is a guide for how you want to be treated, and includes many, many scenarios.
My husband and I used it, and are happy we did. It is somewhat specific, but not in terms of specific meds.
https://fivewishes.org/
posted by dbmcd at 6:31 PM on October 21, 2020
My husband and I used it, and are happy we did. It is somewhat specific, but not in terms of specific meds.
https://fivewishes.org/
posted by dbmcd at 6:31 PM on October 21, 2020
The best advanced directives I have found are here; VERY detailed, worth paying a few bucks for.
posted by lalochezia at 12:00 PM on October 22, 2020 [1 favorite]
posted by lalochezia at 12:00 PM on October 22, 2020 [1 favorite]
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The idea that you might suffer from a hereditary dementia is scary. At whatever point you begin seeing a neurologist, I encourage you to discuss these types of concerns with them so that they can help you to understand when and whether experimental therapies are available.
posted by little mouth at 1:39 PM on October 21, 2020 [6 favorites]