by Gail White, Winter 2018 Newsletter
I’ve always thought there is an uncomfortable gap between making a Living Will and a Do Not Resuscitate order and being sure that they would be followed. Despite general conversations with my mother about her wishes, as her appointed healthcare representative, I worried more about this as she got older. Was it necessary to put it all in writing so that it was clear and enforceable if I should be traveling and initially unavailable? and how to do it?
One day, waiting with her in her doctor’s office for a routine visit, a bright green flyer in his information rack caught my eye. It turned out to be a MOLST form: Medical Orders for Life Sustaining Treatment.
The program was still in its test phase, not yet passed into CT law, with only four healthcare institutions participating in her area. My mother, her doctor and I had an extended conversation about it that day and my mother’s own wishes were clear. As she got older, she had become increasingly against nearly all medical interventions, whether dialysis, operations, or help in eating and breathing. The MOLST form seemed the answer to all my concerns and we executed it then and there. I say executed because it has to be signed by the patient or their legally authorized representative, and an eligible healthcare provider who has completed approved MOLST training. Unlike a living will, other medical professionals will honor the instructions because it is a medical order.
The form covers the patient’s diagnosis and eligibility (either an end-stage illness or advanced progressive frailty) and the broad goals of medical intervention (e.g. anything from unlimited interventions, such as tubal feeding, to only comfort care, such as pain medication). It addresses CPR, transfer to the hospital, and whether ICU care is wanted. (Having previously experienced ICU as a healthcare representative, on my own, I would have said a resounding no for her.) Similar to advanced healthcare directives, the questions of a) intubation and ventilation, b) medically administered hydration and nutrition, and c) dialysis, are covered. There is also room to add other treatment preferences or limitations.
Afterwards, the form was sent to my mother’s assisted living facility and prompted a long conversation between the head of her facility and me. Since it was a new initiative, she wanted to be sure she understood our wishes.
It turns out that only a few months later, my mother developed symptoms of internal bleeding that, under other circumstances, would have sent her to the emergency department for invasive tests, intensive care, and likely surgery. Based on the MOLST, the doctor caring for her at the time recommended that my mother go instead to the acute care unit on campus and be given supportive care, to see what would happen.
Within hours, my mother passed away peacefully at 96. At the end, amid all the emotions, it was so much easier for me to follow her wishes, because of the background conversations, and the thought process and the instructions of the MOLST.
When the time comes, I want one for myself.
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From the FCA of CT Winter 2018 Newsletter