Living and dying – on his own terms

By Kate Jamentz-Tago, Community Ambassador

My husband, Ace, and I learned and loved together for 35 years. He was known for his generosity, quiet strength, and love of family. Throughout his life Ace found joy in moving: soccer, basketball, tennis, and golf… and he loved to dance. So when he was diagnosed with ALS, it seemed especially cruel. 

But in our last several years together, we learned profound lessons about what makes life worth living. For Ace, it wasn’t about a bucket list of travel and grand adventures. It was about preserving the dignity, grace, and humor he so valued in life.

Like so many couples, Ace and I first completed an Advance Health Care Directive as part of our living trust – and as with many couples, that document sat untouched in a file for over 20 years.

But with Ace’s diagnosis, “advance care planning” took on new meaning and depth. We learned that it was so much more than filling out a form designating one’s wishes at the end of life. It was about learning to communicate with each other, with family, and with his medical team about who he was, what he cared about, and how he wanted to live! 

Ace’s Advance Directive became a living document, a catalyst for conversation throughout his illness, and my North Star when I was left alone to make decisions about his care.

The first time we completed an Advance Directive, we had both rejected what are often called “extreme measures.” As young, healthy, seemingly invincible adults, being “hooked up to machines” brought to mind pictures of the frenetic, impersonal ICU we had so often seen on television.

But when Ace began to have trouble swallowing and we were asked to consider a feeding tube, those initial ideas were challenged. The tube would allow Ace to get the nutrition he needed while continuing to eat foods that gave him pleasure. Artificial nutrition would prevent him from losing the strength he needed to stand and transfer to bed and his favorite TV chair. “Feeding time” was often spent sharing a fantasy about steak or crab dinners by candlelight… or just talking like we used to over morning coffee. What Ace had once rejected as “too extreme” became an intimate routine in our day. And he never gave up his evening cake and glass of wine!

The occasion of filling out the POLST (Physician’s Orders for Life-Sustaining Treatment) was another opportunity to reassess what mattered to Ace in his care. Knowing that ALS patients are prone to bouts of pneumonia, his doctor discussed with him the potential use of IV antibiotics. I remember being somewhat surprised when Ace told the doctor he would not want these. 

When I asked him about it, he said, “Now that I have this disease, when I decline like that, I want to go quickly.”

In truth, the most critical decisions we made about Ace’s care had their origins in Atul Gawande’s Being Mortal, a book we read together soon after Ace was diagnosed. Gawande reminds us that medical decisionmaking often prioritizes safety over quality of life.

This was not for Ace, a man whose self-image included his need to move under his own power. Even when his legs failed him, we declined the offer of a mechanical lift and made a pact to find ways that he could stand… even if only for a few minutes each day. Keeping our pact was not easy for me. Away from Ace, I told close friends that I feared he would eventually fall. But I knew that loving him meant helping him do what he needed to do.

And he fell… more than once. And it may have been one of these falls that induced the subdural hematoma and the coma from which he never recovered. 

Somewhere in the blur of our last emergency room visit and after at least one doctor had explained that Ace was dying, another doctor raised the possibility of traumatic, risky surgery that had “a small chance of bringing him back to the level he was in when he arrived.” Doomed, at best, to live out his days in a body that continued to betray him.

Without the many conversations about what was most important to Ace, I may have made the choice to try and keep him alive so that I could be with him. But I needed to love Ace the way he needed to be loved. I knew Ace would not have wanted risky surgery that had no chance of restoring the quality of life he craved. 

And when I had to make those four horrible phone calls from the hospital to our adult children in Utah, the theme of those calls was “How fast can you get here?” – with no time spent in debates about his care. Our kids understood the choices he had made, and I felt blessed to be trusted by them to carry out his wishes.

Ace gave me many gifts in our 35 years together, none more valuable than the conversations that guided me to support him through living… and dying… on his own terms.  

 

Since Ace’s death in 2017, I became trained as a Mission Hospice Community Ambassador to help educate people about the importance of Advance Care Planning. 

I’ve met with other families who made very different choices, and who welcomed every treatment and intervention offered. Each person and circumstance is unique, and there are no “right” answers. My role as a volunteer, and our goal at Mission Hospice, is to support what matters most to each individual and family.