Dianne M. Cutillo: How making a plan eased one family’s grief
NORTHAMPTON — As she lay dying, my mother surprised us by opening her brilliant blue eyes, weakly waving her hand at us, and mouthing the words, “bye-bye.” After the days she had been unresponsive, it was a deathbed gift we’ll always treasure. But the best gift is the one Mom made at least 10 years before her death: her healthcare proxy.
Because Mom completed the Massachusetts Healthcare Proxy form and chose someone to decide for her if she could not, she averted a sibling war among her six children. Because Mom went a step further and thoroughly discussed what she wanted, using Aging with Dignity’s Five Wishes document as a guide, we knew how to make her last days comfortable.
We were at peace from the moment we made the decision to take Mom off life support.
It could have turned out very differently. Mom initially resisted every attempt I made to get her to name a proxy. During one of our more difficult discussions, I grew impatient and spoke harshly.
“Why do you keep pushing this on me?” Mom asked.
“Because you have a death wish,” I blurted. “You are seriously ill and not taking care of yourself. If you end up on life support and a doctor asks what you would have wanted, most of us would say ‘remove the machines.’ But at least one of us would say, ‘She’s my mother, you have to save her.’ And they’d keep you on life support because they would not want to get sued.”
Most of us knew that Mom would not have wanted prolonged life support, because we’d discussed it as far back as when cases like Karen Ann Quinlan’s made headlines. But one sibling had made clear he did not believe in ever, in his words, “pulling the plug.”
I calmed enough to remind my Mom that she could prevent a scene. And she did. A few weeks after my outburst, Mom told me she had chosen my sister Pam and brother Michael as proxy and alternate. And she did one better. She mailed a copy of her proxy to all six of us. It included a note.
“If Pamela or Michael ever have to make a decision,” she wrote, “Don’t question it, because they know what I want.”
Mom was not unlike many of us; she did not find it easy to talk about death and the difficult situations her illness could cause. A couple of weeks before she died, she said from her hospital bed, “Pamela and Michael might have to talk.”
She did not say she was weary of dialysis and of battling her many illnesses, or that she was ready to die. But her simple statement was an affirmation of the decision she somehow knew was coming.
So many people can’t bring themselves to do what my courageous mother did and have the conversations. Part of the reason I pushed her so hard was because I’d heard from so many nurses in hospitals I worked in about family members fiercely arguing about what their Mom or Dad would have wanted.
I’d also heard from many hospital caregivers that physicians are not always good at dealing with decisions to discontinue life support. They were right. The surgeon who was my mother’s attending physician for her last hospitalization kept telling us he could bring her back to the operating room to try again to clear her massive infection. It would have been a high-risk procedure. If she survived it, she would have faced months of rehabilitation in a nursing home. She’d made it clear she would not have wanted that.
And so, though Pam had the legal authority to make the decision, we siblings together convinced the surgeon that the right thing was to remove Mom’s ventilator. There was time for us, as well as Mom’s grandsons, brothers and sisters, nieces and nephews, and friends, to say goodbye.
There was time, as well, to brush her hair. As children, we loved to brush our mother’s long hair and she welcomed it. By her own description, Mom was “not a touchy-feely.” Because she expressed her wishes in advance, we knew that Mom would rather have her hair brushed than her hand held in her last days. And that was a gift for which we will always be grateful.
Dianne M. Cutillo is senior director of public affairs at Cooley Dickinson Hospital and a former journalist. Her mother, Margaret Donahue Cutillo, died peacefully in 2004. This essay first appeared in the Berkshire Eagle and North Adams Transcript.
The VNA & Hospice of Cooley Dickinson and Cooley Dickinson Hospital present a free program from 2 to 4 p.m. Sunday on the issue of health care proxies, including showing of a documentary, at the hospital’s Dakin Conference Room. Registration is required at cooley-dickinson.org/classes or 888-554-4234.