What decisions would you want if incapacitated?

October 21, 2020 12:50 PM

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.

posted by arimathea to Health & Fitness (4 answers total)

Hello, fellow North Carolinian! I am a nurse, a certified case manager, and an advance care planning facilitator, though obviously not YOUR RN/CCM/ACPF. The best advice I can give you is to make sure that the person you choose to be your health care proxy/HCPOA knows about your specific treatment desires. The focus of an advance directive is really only on life prolonging treatments like CPR, ventilator support, dialysis, and artificial nutrition/hydration in the context of a critical illness or injury that has rendered you unable to communicate. If you want all treatments employed no matter how small the chance you might recover, make sure your advance directive says that. It’s a document that imagines a scenario where you are unconscious and requiring a standard menu of intensive care interventions to remain alive, and its scope doesn’t really extend beyond that to requesting experimental treatments. Context matters as well-often experimental treatments aren’t available in all medical settings. Very elderly people who have other chronic conditions or people who have had severe injuries might not meet criteria to be offered certain types of experimental treatments, so your age and overall health might be factors. Your desire to receive cutting edge treatment, in other words, is not an eventuality that you can ensure through the creation of an advance directive. Nor are you able to dictate the specific clinical modalities that you want a provider to employ (your example of using a specific assessment scale preferentially). It’s absolutely still important to create an advance directive, though.

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]

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]

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

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]