I couldn’t have predicted that learning what matters most to patients at the end of life would become so personally important to me this year. But I’m the kind of person who believes that everything happens for a reason.
I work as a manager at the Home Health VNA in Lawrence, Massachusetts. Like the other participants in the Massachusetts Conversation Ready Collaborative, we’re learning how to record, access, and follow our patients’ end-of-life instructions. When I attended the first Conversation Ready learning session, my mother was in the hospital. She was in kidney failure, congestive heart failure, and liver failure. She had bounced back and forth between the hospital and rehab a few times.
Being a nurse, I knew we would eventually have to make some serious decisions about my mom’s care, but she didn’t want to “go there.” Before her health had started to decline, my mom hadn’t seen a doctor in 20 years, and was terrified of most health care providers.
One of the Conversation Ready activities was to personally use The Conversation Project’s Conversation Starter Kit. The kit helps users think about their values, concerns, and preferences regarding end-of-life care. I couldn’t help but think of my mom as I read through it.
I ended up taking the Starter Kit to the hospital. My mom was in the ICU, but she was feeling a little better, and my dad and brother were visiting. I figured it was a good time to open a discussion.
I described my participation in Conversation Ready to her. She was always excited to learn what her kids were doing, so she listened attentively. I told her about my experience going through the Starter Kit.
Given her reluctance to discuss things like this in the past, I wasn’t sure how she was going to react, but the Starter Kit language helped me talk in a way that wasn’t scary. I explained that, as her family who loved her, we wanted to make sure she got the care she wanted. I said, “Mom, I think we should go through [these questions] so we understand what matters to you.” She agreed that it was a good idea, so we went through the Starter Kit together. She told us she didn’t want to be kept alive artificially. “If a doctor says, ‘There’s nothing we can do,’” she said, “please don’t keep me going.”
Before using the Starter Kit, my mom had shared her fear of anesthesia. She said she never wanted to be “put under,” but I decided to get clarification. “What if the doctor says you need surgery and you’re not alert enough to make the decision?” I asked. “What would you want us to do?” She surprised me and said, “If the doctor’s pretty sure something will fix the problem or make it better, then go ahead.”
Less than a week later, my mom started to bleed internally and needed multiple transfusions. My mom wasn’t conscious, but because we’d had the conversation, I knew what to ask when the doctor recommended surgery: “Will this surgery save her? Will this surgery help?” We agreed to go ahead when he said it was the only chance to keep her alive.
Mom had multiple procedures and treatments after that. With every decision we had to make, I kept my mom’s voice in my head: “If it’s going to help me or make a difference, then do it. If it’s not going to help, then don’t.”
Understanding What Matters
One night, at around 11 o’clock, the surgeon called and said, “We need you to come in. She’s quickly declining. Her pressure is dropping.” He explained that they found a small perforation in her bowel. Surgery was an option, but the doctor had no confidence that my mom would survive it.
When we met face-to-face, the surgeon floored me when he said, “Do you have any idea what matters most to your mother?” I said, “Yes, we do,” and explained Conversation Ready to him. I told him about the discussion we’d had with my mom.
The doctor was waiting for test results. “If your mom remains stable, we’ll continue the current treatment,” he said. “If she’s continuing to decline, there’s not much else we can do.”
When the lab results showed that my mom’s condition was continuing to worsen, we told the surgeon to stop treatment. He had tears in his eyes. My dad and I both cried, but we knew we were making the right choice.
As a nurse, I’ve seen many people pass away. My mom’s passing was quite beautiful. They discontinued one medication and, within five minutes, she took her last breath. It was peaceful, calm, and serene.
About two or three weeks later, my dad came by the house and with a packet of papers. Among them were my mom’s health care proxy and advance care directive. My dad had looked for these documents while my mom was in the hospital, but he hadn’t been able to find them before.
My mom always said my dad was her health care proxy, so I was stunned to see that she had appointed me as her proxy when I was about 21, at the start of my nursing career. It was definitely my signature on the document, but I have no memory of signing it!
My dad and I read through the paperwork and saw that we had followed all of her instructions. It was so strange that this document turned up. Even after her passing, it was as if my mom wanted us to know that we’d done what she wanted.
Conversation Ready and the Conversation Starter Kit have truly been gifts to my family. Yes, we’re grieving. Yes, we’re struggling sometimes, but we don’t wonder “What if?” We respected my mom’s wishes right up to her last breath and that gives us peace.
— Tania Philbrook