"A FEN-informed Death," by Beverly Thorn

Walt Thorn and his wife, Beverly. With the help of his wife and a compassionate physician, Walt was able to relax into a peaceful death.

For years, my husband insisted he wanted a death with dignity, and for years, he researched options. He even had an underlined copy of Peaceful Pill Handbook when I became involved with him over 20 years ago.

When he started noticing mild but concerning cognitive issues in 2003, he became heavily invested in learning his options for dying on his own terms. It was 10 years before any abnormalities were detectable on an MRI or with neuropsych testing, and even thereafter, he functioned pretty well until 2016.

He was adamant abut wanting to avoid being placed in nursing home care – and he certainly didn’t want to end up being kept alive through useless medical interventions and spoon feeding, the way his own mother had been.

To gain my cooperation and support, Walt agreed he would not take his life violently. He researched whether any state allows doctor-assisted dying for someone with dementia, if the person has clearly specified their wishes ahead of time.

He became a member of Dignitas in Switzerland, exploring options for qualifying for an assisted death prior to severe dementia. We joined Final Exit Network (FEN) and even applied for Exit Guide services.

I was astounded that two caring strangers would come to us and give us detailed information about non-violently ending one’s life with nitrogen, without any expectation or need for him to ever actually do so.

Ultimately, my husband decided that he wouldn’t go off to Switzerland because he didn’t want to leave his daughters that way, and he didn’t want to use the FEN nitrogen method because it might cause legal (“assisting a suicide”) problems for me or the girls if they knew about it, so that left Voluntarily Stopping Eating and Drinking (VSED).

He talked to his physicians, who were theoretically “supportive,” and we talked to the kids, who understood, and he/we tightened up his Advance Care Directive to indicate that by the time he entered a moderate stage of dementia, he would likely institute VSED.

The booklet published by FEN on VSED was a valuable tool as I took on more of the responsibilities for facilitating his relatively peaceful death.

He ultimately did not act before losing the necessary cognitive skills to stop eating and drinking – I think that he just didn’t want to leave any shred of quality time on the table! But our Advance Directive left very specific prohibitions regarding eating and drinking after the onset of moderate dementia.

Well into moderately severe dementia last fall, as long as Walt showed interest in food and drink, we focused on pleasure eating only – forget about adequate nutrition and none of those blasted protein shakes!

We were to wait on his cue for interest in food. (Later in the process, he would poke around in the pantry or fridge, and we would then offer, but not until then.) We were not to spoon feed him.

During the last year, he lost the ability to identify and use utensils properly, and in the last couple of months, he sometimes forgot the mechanics of food-to-mouth, chewing, swallowing (although he never choked). Toward the very end, he would sit with a small plate of prepared, cut-up finger food, and perhaps get a bite or two, while also trying to chew the napkin, placemat, or cup.

I dreaded the admonition that he not be spoon fed if he indicated a desire for food, but could not feed himself. To my relief, his interest in food and drink seemed to naturally wane, but with it came serious confusion, hallucinations, and agitation.

Had it not been for a close, long-term relationship with his primary care physician – who spotted the need for hospice ahead of time, and who directed all medical decisions based on the specifics in his living will – he would have spent his last days strapped to a gurney in the emergency department and transferred to a nursing home bed somewhere, alone and raving.

Instead, we were able to keep him at home, with a physician who was comfortable and willing to follow his directive to “keep me comfortable even if doing so hastens my death.”

He did not overdose, but he was able to let go of his fight and relaxed into death a few days after being sedated.

It could have been so different, so much more horrible.

As his wife, I was one of the lucky (and informed) ones. I marvel at how easily he could have been sucked onto the medical treadmill of useless and painful interventions, at how he could have died alone in agony.

But a thousand unseen angels were at work along the way, one of them being Final Exit Network.

FEN does so much more than offer information about how to quickly terminate one’s life. They offer knowledge, empowerment, support, and follow-up. For these and so many other things, I am grateful.

By Beverly Thorn