“I want to die today.” Written on the white paper with a fat marker. Written because his voice was gone and his diaphragm was too weak to keep pulling in air. Completely aware, but unable to do much more than lift his hands to write and smile.
Compassion. Although we wanted more days together, he was done. Tired of the marathon he’d been running just trying to breathe. The feeding tube was removed. Antibiotics and steroids stopped. Face-mask ventilator changed to bring oxygen through a small tube to his nose. What a lovely face to finally be able to see again.
Smile. He is a bright light to anyone he meets. He can still find joy in our conversations and share his heartwarming smile. An RN for forty years, he’s seen his share of death from the other side of the bed. Now, it’s his bed. The amyotrophic lateral sclerosis (ALS), is taking him too fast. It’s only been a year.
Love. Three hospital visitors for end of life. He loves people. His wife sat with him every day. But today, she held his phone for video calls with family in Australia. She read emails streaming in from loved ones across the world. We smiled, laughed and cried.
Ice chips. Freedom. That’s what he calls them. Nothing by mouth for days due to aspiration risk. But now as many ice chips as he wants.
Fear. What is the biggest decision you’ve ever made? “Do I die today”? Terrifying. The last decision, ever. You don’t want to get it wrong. He wasn’t sure. “BiPAP” he mouthed, making a mask-like shape with his hand for his non-invasive ventilator. One more day with loved ones.
Time. There will never be enough. We were happy to have another two days together. Don’t rush the last moments. And now he’s truly ready. But are we?
Post script: Three night shift staff came in and said his wife couldn’t stay that first night he decided comfort care only, indicating since “he was using a BiPAP ventilator to sleep, he wasn’t really just comfort care”. We wanted to hear compassion- “I’m sorry, this must be so hard.” “Since he has decided to use the respirator for tonight, would you feel comfortable sleeping at home and we’ll call you if anything changes?”. We were confused since hospice allows non-invasive ventilators if the patient already has one, but respected their decision. Fortunately, 36 hours later, when he took his last breath, his wife and close family were by his side.
I share this to remind us to remember to always try to see the family’s perspective… every time you open their exam room, or hospital door. What would you want if this were your brother, father or loved one? Thank you to the BUMCP ICU staff, especially Dr. Beth Batchelor, for allowing Patrick to be in charge of his life… and death.
Susan Kaib McCartan, MD, FAAFP
GHHS Advisor, University of Arizona, College of Medicine-Phoenix
Dr. Kaib completed her residency at Phoenix Baptist Hospital and earned her medical degree from The University of Arizona College of Medicine – Tucson. She graduated cum laude from Arizona State University, Tempe, with a Bachelor of Science in chemistry. Dr. Kaib is a member of the American Academy of Family Physicians and the advisor for the UA COM-P branch of the American Medical Women’s Association. She previously had a private practice in Phoenix.