It’s one of the hardest conversations many people never have: talking about dying with family and friends and how to plan a “good” death. Meet three people who have had those tough talks.
On a cool November day, Denise Lenz sat in the backyard at her brother and sister-in-law’s home in northern Illinois. Despite the season, it was warm enough for friends and family to gather outside to watch the pig roast in progress and kids leaping around a bounce castle.
Amid the party’s buzz, visitors made their way to Lenz, the guest of honor.
“People showered her with attention and affection,” recalls Lenz’s daughter, Robin Rush.
It wasn’t Lenz’s birthday or a milestone anniversary. The party was her grand goodbye. At 56, Lenz had been diagnosed with liver cancer, and it had metastasized to her lungs. Doctors told her she had three months to live, and Lenz was determined to make the most of the time she had left.
She told her family she didn’t want people crying over her at a funeral service after she died. She wanted to be present to celebrate her life with everyone she cared about.
Lenz was a character — one of a kind in many ways, Rush says. But in talking about her death so openly, she defied the odds in other ways. Although 92 percent of people say that talking with their loved ones about end-of-life care is important, only 32 percent have actually done so, according to a national survey by The Conversation Project.
At Her Own Wake, A Life Celebrated
When Lenz first brought up the idea of having a life celebration, Rush was skeptical.
“It’s kind of weird,” she recalls thinking. “You know you’re going to pass and you’re throwing a party?”
But Rush, who was 28 at the time, knew that throwing a huge party — filled with the music of Janis Joplin, Bob Dylan and other favorites — was exactly the kind of thing Lenz would want. She was “a rock star,” Rush says — an extrovert who mentored special needs adults, rode Harleys and loved socializing and being the center of attention.
The family also was familiar with how sad and heavy funerals could be. Five years earlier, Lenz’s husband, Bob, had died of congestive heart failure. Although the family knew he was dying, no one talked about it. Talking about his death with his wife and children just seemed too painful, Rush says. Bob’s parents made all the arrangements, and after he died in a hospital, the family held a traditional, closed-casket funeral and laid him to rest in a mausoleum.
The whole affair felt distant and formal, says Rush. When Lenz received a terminal diagnosis, she took the opposite approach, wanting something else for her two grown children when they lost their second parent. She talked about death openly, decided to celebrate her life and made plans to die at home rather than in a hospital.
“She didn’t want everyone to be sad and depressed like we were with my dad,” Rush says.
When Lenz’s friends and family gathered for the party several weeks later, “it was a whole huge mix of everybody she had ever been close to,” Rush recalls. “People she hadn’t seen in years and years and years showed up.”
About 60 people from Lenz’s life streamed in and out of the party: high school friends and biker friends, folks from around town and her vast family. There were no formal speeches, but Lenz was surrounded by people sharing memories and cracking jokes.
“She didn’t want everyone to be sad and depressed…”— Robin Rush
“It was great for the family and her friends to have the opportunity to say goodbye and tell her how much they loved her,” Rush says. It also gave Lenz — who had a strong personality and sometimes offended people — an opportunity to make peace with people she’d had conflict with, Rush says. Even after the party Lenz reached out to people she didn’t communicate with regularly in order to make amends before she died. When she died, 15 months after the celebration of life, nothing was left unsaid.
Rush acknowledges that her mom’s vibrant personality and relatively good health toward the end of her life made the celebration-of-life party a success. But even people like her father, who wouldn’t have been comfortable in the spotlight, could learn from Lenz’s fearless approach to end-of-life discussions, which ultimately made her death easier for her family.
“My mom was more realistic about her death,” Rush says. “Losing my mom and dad were totally different experiences.”
Questions to Guide End-of-Life Conversations
Where to begin? Don’t start with the details, like what to do with a loved one’s remains or whether to allow resuscitation. Broad, open-ended questions can make it easier to kickstart a conversation.
- Who would you like to speak for you if you can’t speak for yourself?
- What is important to you at the end of your life?
- What does a meaningful life mean to you?
- How much information do you want about your condition, prognosis and life expectancy?
Private, personal health websites like CaringBridge and WhatMattersNow allow family and friends to stay informed about a loved one’s care and needs when facing a serious illness or injury.
Her Father’s End-of-Life Plan Didn’t Go According to Plan
Silvia Perez-Protto, medical director for the End of Life Center at the Cleveland Clinic, has witnessed many of the ways a death can unfold: tragically, suddenly, peacefully.
“I see death all the time,” she says.
Perez-Protto’s interest in end-of-life care began when her father, Luis, who was also a doctor, died just three months after being diagnosed with lung cancer at 56.
“Most doctors gave us hope. Only one told the truth … so I chose not to believe him.”— Silvia Perez-Protto
During the short time between his diagnosis and his death, Perez-Protto said no one was honest with her family about the prognosis. Because of that, Luis’s family, including his five children, were unprepared for his death.
“Most doctors gave us hope. Only one told the truth, but without any empathy, so I chose not to believe him.”
Had they known and accepted that her father’s time was limited and that aggressive treatments weren’t likely to extend his life, she thinks her father might have made different decisions. He would have spent more time with his kids, the youngest of whom was just 15 when he died, she says.
Ultimately, Luis died in the intensive care unit from complications of chemotherapy. When Luis went into the hospital the day he died, Perez-Protto thought she was making treatment decisions for her father, not end-of-life choices.
That experience — 17 years ago — shaped how Perez-Protto interacts with her patients and their families today.
She always asks two questions:
- Do they know this is the end of their time together?
- Is the patient doing what he or she would want during the end of life?
Being able to answer these questions requires honest information from doctors, and it isn’t always easy to deliver. No one wants to tell a person they have weeks to live, she says.
“But patients have a right to know what the future is and be given the opportunity to choose what they want,” Perez-Protto says.
She encourages doctors to walk patients and families through all scenarios — after all, no one knows for certain how long even the sickest patients have left to live. With that information, patients and families can make choices that align with their priorities.
Despite working in end-of-life care, Perez-Protto knows these conversations aren’t easy. A few years ago during a trip home to her native Uruguay, Perez-Protto planned to talk to her mother about end-of-life wishes. She took her mother to the beach and intended to have the conversation as they strolled, but she just couldn’t do it.
“I was stuck,” she says. “I didn’t know what to ask or how to ask.”
Two years later Perez-Protto returned with a copy of The Conversation Project, a kit that uses prompts and 1–5 scales of importance to open discussions about end-of-life wishes. With that tool in hand, Perez-Protto found it much easier to broach the topic with her mother — so much so that she completed the kit herself and has sent kits to her siblings and in-laws as well.
“They think that I talk too much about death, but I live it consistently,” she says. “We talk about having a baby; we talk about getting married. Talking about death is one more step that we go through.”
Talking About Death Over Dinner
Death Over Dinner is a national movement aimed at helping people discuss dying, end-of-life preferences and meaningful living in a dinner party setting. Perez-Protto participated in one event with her Cleveland Clinic colleagues and is considering hosting another dinner when her extended family visits.
She Never Recovered. Meticulous Planning Eased Her Daughters’ Pain
When Patty Webster’s mother, Ann, suddenly suffered a stroke she could not recover from at age 73, Webster says the shock of the loss was tempered by one thought: We know exactly what she wants us to do.
Ann, who lived outside Philadelphia, had always insisted on talking about death and her end-of-life wishes with her three daughters; she had worked in hospitals throughout her career and had seen firsthand how difficult end-of-life decisions could tear families apart.
“She would talk with my sister and me all the time about what quality of life looked like to her, what values she had,” Webster says. Ann even kept what she called her “handy-dandy notebook,” which held legal documents like her living will and power of attorney and information about her financial accounts.
“We realized the gift she had given us in having these conversations.”— Patty Webster
Despite Ann’s passion for conversations about end-of-life planning, her daughters didn’t think they would need the information any time soon. Ann’s own mother had lived to be 106; the family expected Ann to live longer, too. She was healthy and had recently traveled to the Galapagos Islands — a lifelong dream — when she suffered a stroke with no warning.
“It was a complete shock,” Webster says.
Initially, the family planned for Ann’s care and recovery during the time she was unable to communicate. But when Ann had a second, more devastating, stroke, her daughters realized they were planning for the end of her life.
“That’s when we realized the gift she had given us in having these conversations,” Webster says.
Her daughters knew that a meaningful life for Ann was one filled with interaction and conversation.
“Her worst nightmare would be to be stuck in front of a television, not being able to engage with those around her,” Webster says.
With that understanding, the sisters declined a permanent feeding tube that might have prolonged Ann’s life but not the life she would have wanted.
“We had to make tough decisions, but it was easy to make those decisions because she was on our shoulder,” Webster says.
Although Ann hadn’t focused on specific medical decisions — like allowing a ventilator or using sedatives — when she talked to her daughters, she made sure her daughters knew what was meaningful and important about her quality of life, Webster says. Knowing her values helped guide their decisions.
“People say, ‘oh, well, pull the plug,’ but there’s no plug,” Webster says.
In reality, end-of-life decisions are complex, nuanced and unpredictable. Addressing the details can be intimidating and keep people from starting discussions about death, says Webster. Ann’s approach allowed her daughters to make specific decisions, with the guidance of medical professionals, that aligned with Ann’s definition of a meaningful life and peaceful death.
Webster says her mother’s meticulous planning helped make the loss survivable. Knowing what Ann wanted and how to take care of her finances allowed Webster and her sisters to focus on grieving and mourning the woman they loved, without needing to divert time and emotional energy to caring for the details of death.
“I don’t know how families would go through it without those wishes,” she says. “We were so relieved. It was a good death.”
Today, more than two years after Ann’s death, Webster is carrying on her mom’s legacy by talking about her end-of-life wishes with her 18-year-old son. When he left for college, she asked him about his medical proxy and end-of-life wishes. She has discussed the same with her in-laws. Conversations about end of life have become so common, Webster’s husband often rolls his eyes when she begins digging into the topic.
“I see that as a success, because it has become a normal, routine conversation,” she says.
Creating Your Own “Handy-dandy Notebook”
When Ann Devine died, her “handy-dandy notebook” a death planning workbook containing her family paperwork and financial information made it easier for her daughters to sort out logistics. Consider compiling the following documents one place and let appropriate family members know where the information is kept.
- A copy of your will and healthcare proxy
- A copy of your end-of-life wishes
- A copy of prepaid funeral plans
- Information on each of your financial accounts, including account numbers and access information
- Contact information for professionals, including lawyers and financial planners
- A death planning checklist that lists the documents included in the workbook