By Joel P. Engardio
Sex in America was so taboo that even though it was on everyone’s mind, no one dared talk about it. Centuries of bad sex followed.
Then the baby boomer generation became teenagers.
Everything changed because they weren’t content with the old rules of sex -- or career, or parenting or retirement. Boomers have used their revolutionary spirit and sheer size to redefine every life stage they reached.
Now senior citizens, boomers are beginning to face a final taboo harder to break than sex ever was. Death has a lot of room for improvement.
“My dad died of cancer and my parents never had a conversation about what he wanted, so he just suffered through it,” said Evy Schiffman, 65. “Before my mother died, her only direction was ‘just shoot me’ if she needed life support. ‘Just shoot me’ is not a plan.”
Schiffman decided to do things differently when her husband Neil -- an Ironman triathlete who never smoked -- was diagnosed with terminal lung cancer at 63.
Neil fought the disease and lived four additional years, but Schiffman said they also talked candidly about how Neil defined quality of life and what he wanted his death to look like. It was important that Neil’s actual experience matched his wishes.
Most Americans surveyed don’t want to spend the end of their life hooked up to machines in an intensive care unit, yet 20 percent do. Despite preferring to die at home, an estimated 70 percent of Americans ultimately die in a hospital or long-term care facility.
All that unwanted treatment is expensive. The last months of life consume nearly 30 percent of the Medicare budget. And our spending appears to have diminishing returns. Terminal cancer patients lived longer when they chose to focus more on quality of life care than costly and aggressive treatments, according to a study in the New England Journal of Medicine.
Better outcomes for patients while saving money sounds like a public health policy home run. But culture and politics can make it difficult for doctors and patients to have honest conversations about dying. Simply getting Medicare to reimburse doctors for the time they spent talking to patients was politicized as “death panels.”
A start-up called Copilots in Care aims to make those conversations easier. An app connects patients to in-person social workers who help patients reflect on their medical wishes and facilitate open discussions with family. Then a summary is created to share with their doctor.
“Copilots asked questions we hadn’t thought about but needed to consider,” said Schiffman, who used the service with her terminally ill husband. “It wasn’t a sad meeting. We came away feeling empowered. The tough decisions were already made. I could just focus my energy on taking care of Neil.”
Copilots was founded by two millennials who intimately witnessed how things go bad when people try to deny or defy the reality of death. David Atashroo, 31, and Eric Reuland, 28, met at Stanford when Atashroo was a postdoctoral medical student and Reuland was in business school.
“What haunted me as a surgical resident was how often we put patients through painful procedures without having a meaningful conversation about their health goals and all the potential outcomes,” Atashroo said. “I was complicit in a system that caused unnecessary suffering and I wanted to change it. When there isn’t a cure, we need to put value on quality of life care.”
Co-founder Reuland remembers his aunt as a “fun” second mom who taught him how to dance.
“She was an open book, often telling me more than I wanted to know. But she never accepted her mortality. We never had a conversation about her desires for the time she had left,” Reuland said about his aunt’s terminal breast cancer. “The last weeks were so difficult. My mom wishes we could have helped manage my aunt’s pain earlier on and helped her achieve an end of life that she deserved.”
Reuland is convinced that a facilitated conversation would have helped his family, which is why he believes Copilots will make a difference even in the most difficult cases.
While preparing for death at the age of 60, 70 or 80 will always seem too soon, imagine the stress when the patient is in their 20s or 30s.
Hormozd Gahvari, a 34-year-old researcher at Lawrence Livermore National Laboratory, was married 18 months ago and has a baby due in June. He also faces a relapse of bone cancer that already caused the amputation of his left leg.
Gahvari nearly died last year when tumors aggressively took over his lungs. His wife Ashley Medina, 27, spent their first wedding anniversary next to his ICU bed in the hospital.
Gahvari had been in remission and they didn’t have an end-of-life plan when his health suddenly crashed. His wife feared having to make decisions for Gahvari if she didn’t know – or agree with -- what he wanted.
“I never want to be in the position of debating with Hormozd when he doesn’t have the energy to breathe,” Medina said.
After surviving the crisis and responding to a new round of chemotherapy, Gahvari used Copilots to put all his wishes in writing.
“Pop culture says fight, fight, fight. I still have a lot I want to accomplish in life. I want to see my child born,” Gahvari said. “But you can’t bury your head in the sand. You need to be prepared for what can happen.”
Copilots is free for patients. But it is a for-profit company that bills health systems and insurers for the consultations. The founders want to make enough revenue to scale the concept.
“I would love it if there was no need for this app,” Reuland said. “But that would require every doctor having the training and time to talk comfortably about death and a change in culture so death is not something swept under the rug.”
Schiffman, who went to marches and drove across country to San Francisco in a Volkswagen with her husband in the 1970s, said her generation is poised to incite one last cultural shift.
“Boomers have always been willing to speak about the unspeakable,” Schiffman said. “We will transform the way society looks at, talks about and faces death. Because death is not optional.”