Whenever Ellen Goodman’s mother learned a friend or relative was in the hospital comatose or on a feeding tube, she joked, “If I ever get like that, pull the plug.” But she never said what she actually meant by that—and Goodman didn’t ask.
Toward the end of her life, Goodman’s mom became unable to speak due to advanced dementia, and Goodman had to be her voice. She wished she knew her mom’s preferences for end-of-life medical care, but she didn’t because they never talked about it.
Forced to make decisions she was uncertain her mother would choose for herself, she felt unprepared to answer the most basic questions doctors had, such as, “Should we start your mom on antibiotics?”
After sharing her frustrations with colleagues and friends, Goodman, a Pulitzer Prize-winning columnist with the Boston Globe, discovered there were a lot of people in the same position—especially survivors like her who lost a parent. They all agreed the experience would’ve been easier if they had had conversations in advance about their preferences for care, who they want to make health care decisions for them (a health care proxy) and at what point they would choose to transition from life-saving measures to comfort care.
The experience was much less complicated for families who had those conversations, she learned. From grieving and sibling relationships to regret and guilt about decisions, it was all easier to handle when everyone knew the care recipient’s wishes and stuck to their plan as closely as possible. Without those talks, families risk getting torn apart by disagreements.
Conversation starters for end-of-life conversations
Of course, not everyone is comfortable talking about their mortality, so in 2012, Goodman came up with a solution. She launched The Conversation Project, an initiative of the Institute for Healthcare Improvement, to provide families with the resources they need to start the conversation with their loved ones about how they want to live at the end of their lives and the type of medical care they wish to receive.
It always seems too soon to have these conversations until it’s too late.
“It always seems too soon to have these conversations until it’s too late,” said Kate DeBartolo, senior director of the project. “Encourage people to have them early and often at the kitchen table and not in the ICU. It could be on a walk, on a car trip, sometime when you have a chance to talk about it beforehand. A crisis is a hard time to learn. That’s what we’re trying to avoid.”
The group offers free conversation guides online in English, Spanish and Chinese – there’s also an English audio-video guide you can download – as well as blogs containing real-life examples of families having these conversations.
“Our conversations are about medical care, not about finances, inheritance or funeral planning,” DeBartolo said. “It’s about the, ‘How do you want to live?’ part and it’s important to separate that out. We cannot control everything that’s happening to our bodies, but conversations can help clarify that our wishes will be known and respected.”
Pamphlets are available that cover everything from choosing a health care proxy to being a health care proxy, talking to a health care team, caring for loved ones with Alzheimer’s and dementia and being prepared in the time of COVID-19.
“These guides are about medical care now and through the end of life,” DeBartolo said.
To get started, she recommends clicking on the Conversation Starter Guide tab to view sample questions, such as, “If there’s a time where you cannot speak for yourself, what do you want other people to know when it comes to your medical care?”
“It’s about your values, what matters most to you and who you want involved,” she explained. “We don’t go into a lot of hypotheticals.”
The conversations benefit both the person whose wishes are known and heard, DeBartolo explained, and the survivors of that loss whose grief is made less complicated by knowing they didn’t have to make that decision at all—their loved ones made it for them. It’s crucial for more than one person to know their loved one’s wishes to avoid an out-of-towner swooping in and thwarting all their plans.
“Clinicians are so grateful when families have these conversations and everyone is on the same page,” she said. “Our tools are not legally binding, yet many clinicians prefer a family who is all in agreement. The conversations really carry a lot of weight for folks.”
The guides frame the conversations positively by asking someone to explain their idea of a good day and the type of care they would want if they could no longer experience one.
“Some people say if I can watch college football and eat chocolate ice cream, do everything you can [to keep me alive],” DeBartolo explained.
If someone refuses to have the conversation, DeBartolo said it’s not helpful to badger them. She advises telling them, “I understand you don’t want to talk about this; are you comfortable with me making decisions for you if you cannot speak? Or is there someone else you’d prefer?”
You can also make assumptions about the care you think they want and ask them if they agree. For example: “Here’s what I think you want, is that alright with you?” They might say yes and elaborate on any additional care they desire or say no and explain why you got it wrong—offering clues to what they do want. Some people prefer writing down their wishes or recording them in a video over having the conversation—and that works just as well.
It’s a loving opportunity to show you care for somebody and respect and honor them.
“Sometimes people expect these conversations to be harder than they are,” DeBartolo said. “There could be tears, but many times there’s laughter. It’s a loving opportunity to show you care for somebody and respect and honor them.”
Once a care recipient’s wishes for end-of-life health care are known, it’s important to revisit the conversation every so often because situations change. But their wishes always matter.
