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COVID makes clear: Advance directive is not enough

Wednesday, July 8, 2020

This article first appeared on Hawaii Tribune Herald

By Nona Wilson

Do you want to die in an ICU? Hooked up to machines and tubes, surrounded by masked strangers, bright lights and noise?

It’s a sobering but very real image — one I’ve seen countless times in my career as an ICU/ER nurse and hospital administrator. Now, when a pandemic makes these questions all too real, it is a reminder for us to consider what our wishes would be when facing the end of our lives.

Most people, myself included, say they would prefer to die at home surrounded by loved ones. The hospital is the last place I want to spend my final days.

I have taken actions to ensure my wishes are followed — and I believe everyone older than the age of 21 should as well.

It’s called an Advance Health Care Directive. In fact, thanks to outreach by organizations such as Kokua Mau and Community First, you might already have completed one. If so, you know how easy it is. (If not, why not take this time to do it now? Go to kokuamau.org and click on “Advance Directive” to download the free form.)

But just completing one is not enough.

How do you ensure your AHCD really reflects your truest wishes — and that it is actually followed when the time comes? What if dementia or COVID-19 enter the picture?

The health care system moves slowly, and official forms have not kept up with the reality many of us will face. The Hawaii AHCD form does not include dementia nor COVID-19 provisions (yet), but you are entirely at liberty to add your own. Free provision forms can be downloaded at compassionandchoices.org/resource/dementia-provision/ and compassionandchoices.org/end-of-life-planning/covid-19-toolkit/.

Part 2, Section E of the Hawaii form, “What Is Important to Me,” is listed as optional, but it should not be ignored. This is where you list your values, what makes life worth living for you and your thoughts about when you would NOT want your life prolonged by medical treatment.

Video-recording a personal message about your wishes can enhance their actual impact on your end-of-life experience. A video lends immediacy and an authentic tone that can be far stronger than any signed and witnessed form. There are some excellent step-by-step instructions in “Finish Strong, Putting Your Priorities First at Life’s End” by Barbara Coombs Lee.

If for any reason you are taken to an ER, be sure to have a copy of your AHCD (and POLST if you have one) with you. Some people even keep one in their car and on their fridge. Even though you might have been seen at that facility in the past and might have provided them with a copy, do not assume they still have access to it. It’s been my experience that although I hand-carried a copy to my doctor and the hospital where I have a chart, somehow it cannot be found.

Having managed an ER for almost 40 years, I can tell you that the ER doctors will honor your wishes if known. Otherwise, they are obligated to take all measures to keep you alive.

For me, being on a ventilator in an ICU is not my idea of living.

Finally, an AHCD can be useless unless you make sure the right people are on board with your wishes. Being clear with your loved ones about what you want relieves them of the burden of having to make difficult choices at an emotional time.

Give them permission to be (even insist that they be) adamant on your behalf.

It’s a gift to them, and to yourself.

Nona Wilson is a retired Intensive Care Unit and Emergency Department registered nurse/hospital administrator. She oversaw Kaiser Permanente Honolulu’s Emergency Department, After Hours Clinic, After Hours Advice Line and Honolulu Clinic ER for more than 20 years, and was assistant hospital administrator for Ka‘u Hospital for 11 years.

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