• Sarah Schafer, MD

The "What ifs"

Updated: May 12

Many of us live in denial of this basic truth: life can turn on a dime. Have you truly considered what would happen to you in a major health crisis? What if you become are unable to care for yourself or communicate your needs? Without clear instructions, the medical system goes into “default” mode, which could be very different from what you would choose. That is why every adult should have a legal document called an Advanced Health Care Directive (AHCD). The AHCD spares your loved ones from having to play a life and death guessing game on your behalf.


Personally, I am less concerned about communicating the important “when to pull the plug” question than I am about getting proper care if I become incapacitated. One of my biggest fears is that I will be in a semi-aware state and suffering from severe eye pain because my caregivers don’t know the specific, detailed eye care that I need. An AHCD can be used to address unique health needs such as this. Details such as which product brands to use-or avoid-may seem trivial to providers, but are hugely important to Sjogren’s patients. If we don’t provide clear and specific guidance, good care won’t happen.


I am just now putting the finishing touches on my new AHCD. It took quite some time to write a 12-page Addendum to go with the standard form used by my institution.


Why so many pages? The eye care section alone takes up two full pages. I also use the addendum to explain my customized medication regimen, including some quirky things that I do with timing my doses, taking with food, etc. I request that certain medications be avoided unless absolutely necessary because they either make me too dry (antihistamines) or cause nausea (opioids, certain antibiotics). These are just a few examples from my AHCD addendum. Obviously, I cannot anticipate every need that will come along. However, I can cover the baseline care that will keep me as comfortable as possible.


Do you have an AHCD that has been updated in the past 10 years?

If not, it is time to put one together. Many health care systems provide forms and instructions. Alternatively, you can find them online.


This is the ultimate self- care project—and worth the effort!





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