Tough conversations about PAH can become defining moments
Talking about my husband's end-of-life wishes was difficult but necessary
With age and time, some life events have become diminished, while others I can recall with perfect clarity. Many of my memories from the days after my husband, Tim, was diagnosed with pulmonary arterial hypertension (PAH) will always remain vivid in my mind and serve as defining moments for me.
One such moment took place shortly after his diagnosis in late 2001. Tim had been released from our local hospital and scheduled for admittance to Duke University Hospital, where he’d have a Hickman catheter inserted and begin receiving Flolan (epoprostenol GM). Between these hospital stays, he had about 45 days at home in which he’d been instructed to stay seated, only walking to and from the bathroom.
Once we arrived at Duke in February 2002, a cascade of paperwork greeted us, and our schedule for the upcoming week in the hospital was mapped out. The paperwork included questions about a living will, power of attorney, code status, and other advance directives.
The flood of information Tim received that day seemed to distract from his excitement about beginning treatment. The reminder that the therapy wasn’t curative and would focus only on alleviating his PAH symptoms didn’t leave him overly optimistic about the days to come.
Understanding my role as a caregiver
As I lay on a cot beside Tim that night, he rolled toward me from the hospital bed and started talking about dying and his wishes were something to happen to him during surgery or treatment initiation. He told me that if something catastrophic took place, he didn’t want to be on life support. He also shared that he was afraid. The 45 days of sitting had given him time to reflect on the possibility of living that way indefinitely.
I was shocked to hear that he felt that way. Although I realized PAH could take his life, I wasn’t prepared for his decision regarding lifesaving measures.
We talked more throughout the night, and he explained the reasons and feelings behind his approach. I may have disagreed with his choice to reject long-term lifesaving measures, but I understood his perspective, and I knew he was making a well-informed decision.
That night on the cot has since been burned into my brain. It was evident that his decision was based on his sudden incapacitation, as well as the time he’d spent watching helplessly as life passed by. I never would’ve predicted his reaction or decision, but in that moment, I set the tone for how I’d care for Tim. He needed my permission to begin treatment on his own terms. Supporting him — not deciding for him — would be my role from then on.
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