What Can You Do for Your Loved Ones When You’re Dying of Cancer?
“Just remember data always has a face.”
That was the advice that Michael Becker, a former biotechnology company chief executive who now has head and neck cancer, told the assembled executives at the Forbes Healthcare Summit in New York last month. Behind every data point in every spreadsheet, there is a human being, he said. “There is a person like me, there’s a person with a family, there’s a person with children, there’s a person who has been touched by that disease.” Both he and the audience were choking back tears.
Becker, who I profiled earlier this year, developed a cancer caused by the human papilloma virus, or HPV. Usually such cancers are highly treatable. But his returned after six months. It is likely that it will eventually kill him. “One thing I decided,” he said, “is I wanted to do something that mattered.” For him, it was blogging about his experience, both to raise awareness that HPV vaccination can prevent cancer, and to talk about what it means to die.
“I really think we need to start talking about dying,” Becker said. “Even though a patient might be in pain or bedridden or terminal, they still have goals that matter, they still want to make their mark on the world, maybe even more so because they don’t have much time to do it.”
And it was that topic that went on to resonate. The session after Becker’s talk featured big names in health care who had all taken care of loved ones as they died of cancer. Becker had a question for Lucy Kalanithi, whose late husband, Paul Kalanithi had chronicled his own lung cancer in the bestseller When Breath Becomes Air. Pulling himself together, Becker asked a question about his wife. “Is there anything I can do to make her life easier?”
“Paul said, ‘You were more than enough. Just so you know.’ And I hold on to that,” Kalanithi said. She also talked about knowing the limits of what a caregiver can do. As a physician herself, she felt a huge responsibility to help Paul avoid overly aggressive care that might be traumatic, but not helpful. And they discussed what he wanted a lot. But one day, he said to her: “I just want you to know, in case it ends up being really traumatic, for me, or you, or I’m getting CPR and you don’t think that’s supposed to happen: The last day of your life is not the sum of your life.
“The last day of your life is the last day of your life,” Paul Kalanithi told his wife. “And the sum of your life is the sum of your life.”
Paul’s words, Lucy said, absolved her from future guilt. It was simply saying those words that mattered. Other panelists agreed. Peter Bach, a researcher at Memorial Sloan-Kettering known for his work on drug pricing, spoke about losing his wife to breast cancer. A few days before she died, she told him: “I feel incredibly lucky.”
“I have carried that with me since that moment,” Bach said. “It’s absolving in some way. Because it’s very easy to sit here and say, for me, my biggest regret is everything she’s missed. But I chose to believe her, and think it was true what she was telling me.”
Christi Shaw, an President, Lilly Bio-Medicines, a division of Eli Lilly, cared for her sister, who had multiple myeloma. To do so, she’d quit a job at the drug giant Novartis. Her sister died suddenly, after she fell in her home and had a subdural hematoma because her blood would not clot. But she had left Shaw a note: “You did so much for me, and we got so much more time together.” Their stories were reminders that medicine is about human beings, and that we all need to be cared for and to care for our loved ones. At an event that often focused on the science of business of healthcare, it was the most powerful moment of the day.
A personal note. After almost 19 years covering health care at Forbes, I’m leaving for a new adventure as a writer. This will be my last post here.