Advance medical directives deserve careful thought

It’s sobering to see a document with the words “Last Will and Testament” and my full legal name beneath them.

As the mother of two 20-something children, I know I need one, but I can’t help but imagine myself as a murder victim in an Agatha Christie mystery. (Make that “True Detective” episode for anyone not in my age cohort.)

Since I cover health issues, I paid close attention to the advance medical directive I signed as part of the package.

The phrases were provided for me and basically said that if I have a terminal, irreversible condition and I’m not able to stay alive without a bunch of equipment, I give permission to be disconnected.

I had thought I might be more involved in crafting my specific end-of-life wishes. Or at least receive some choices similar to those student photo packages they used to pitch in school.

Package A: Keep me going under any circumstance. Step away from the electrical outlets, people. Cryopreservation? Sign me up!

Package B. Use your best judgment.

Package C: No need for an ambulance. Save the Band-Aids. Let me bleed out in the bathtub so it’ll be easy to clean up. Food, water? Meh.

My lawyer explained to me that because I’m reasonably healthy, the endeavor is more about broad principles and selecting someone to be my health care agent who will fulfill my wishes in the event I’m not able to croak out directions.

That made sense, so I signed my name.

But I was still curious as to situations in which people get more specific, so I called Andrew Hook, who specializes in elder law in South Hampton Roads and is president of Hook Law Center.

He said people get more specific in response to medical conditions they already have.

People with mental illness, for instance, may craft an advance directive appointing someone to make decisions when they are in a mental crisis and a doctor deems them incompetent to make sound decisions. An advance directive in that situation could outline a choice of hospital, types of treatment, who should be notified, and who has permission to make decisions for them, even over their own objections.

When the person reaches a more stable condition, they return to making their own decisions.

People in the end stages of certain diseases, say heart disease or kidney failure, often are more explicit about procedures, such as whether they want CPR or dialysis, or even ambulance transport to a hospital.

Another category that bears more specifics is people in dysfunctional families, or those where disagreement is likely to erupt. (OK, that’s everyone, right?)

You can outline who has power to make health decisions, who should be informed of your illness, who can be allowed to visit. In situations where someone doesn’t know which family member will be nearest at the time, multiple people can be appointed, and even who has final say if there’s disagreement.

Hook said most people don’t want to live indefinitely hooked up to machines, so it’s important to select someone with the spine to follow through with your wishes.

So, of course, I had to ask: Anyone ever swing in the direction of using extreme measures to stay alive?

In Hook’s experience, probably about 5 percent have – usually people familiar with high-profile media stories about fights over whether to sustain life or not. Often such situations arise from defining what, exactly, is an extreme measure. What usually springs to mind is a ventilator or a heart-lung machine. But advance directives often include nutrition and hydration by feeding tube and IVs.

Hook said people can usually decide whether they want a loved one on a ventilator for life, but food and water pose a more subtle measure that is fraught with questions of whether they are extraordinary measures. What might be extreme to one person is simple sustenance to another. Someone might not want to live by an IV or food tube, but would be spoon-fed, for instance.

Not long after our conversation, that very subject came up in a story in The New York Times about a retired lawyer in Massachusetts who wanted his advance directive to specifically address dementias such as Alzheimer’s.

That condition doesn’t fit neatly into an advance directive because it can take years to die from and doesn’t have any high-tech device like a ventilator to unplug.

Jerome Medalie outlined 10 conditions, including things like “I cannot recognize my loved ones” and “I cannot articulate coherent thoughts and sentences” and the time period after which he wants his health proxy to ask that he not be spoon-fed or offered liquids.

Such measures are mired in religious and ethical controversy and not yet fully tested in court. Health care providers and even relatives might not want to comply. What if they sense Medalie is getting some pleasure from something as simple as a spoonful of ice cream when he reaches that state?

It all makes the most inscrutable Agatha Christie murder mystery seem straightforward and obvious, doesn’t it?

Whew. My whole family thinks I’ve gone on about this issue long enough, so I will oblige them and leave you with these simple takeaway messages:

Discuss. Commit to a legal document. Let people know where you tuck that away – whether it’s online, through email, your glove compartment, or on the door of your refrigerator.

And get back to reading a murder mystery – fiction if possible.

Elizabeth Simpson, 757-222-5003, elizabeth.simpson@pilotonline.com