Wednesday, November 5, 2014

Living With Dignity

This past weekend, two women faced death. Both women had been diagnosed with incurable brain cancer. Both were young, beautiful, vibrant, with loving families and the world at their feet. Both chose to spend the remaining months of their life fighting for something bigger than themselves. For many, these women stand out as courageous examples of heroism.

On New Year's Day 2014, Brittany Maynard received a staggering diagnosis. 29 and recently married, she now contemplated brain cancer. Surgery proved ineffective, and by April doctors told her the tumor had grown into a grade 4 glioblastoma, an aggressive cancer that would likely claim her life within six months. Brittany and her family researched the options, none of them pretty. Treatment could prolong her life but not save it, and the side effects of the treatments themselves would drastically reduce the quality of what little time she had left. The tumor already promised a terrifying decline. Adding side effects of radiation and chemotherapy seemed unpalatable.

Have watched a loved one die from a grade 4 glioblastoma, I claim some experience with the indignity of the death the disease inflicts. I have watched a once handsome and athletic body grow puffy and weak with steroids. I have wept with frustration as the honor student struggled to pass classes that once came easily to him and finally struggled even to remember how to tie his tie. I held his hand as he recovered from yet another seizure, and I injected morphine to control the awful pain. I fought with insurance companies, propped a bowl under his chin while he threw up blood, and talked long into the night with him about what it might feel like to leave this life. In the end, I changed the diaper of a man who no longer recognized me. No one deserves to die that way.

While Brittany struggled with her own illness, another young woman also contemplated a diagnosis of terminal brain cancer. Lauren Hill, a high school senior and standout basketball player, had just signed on to play basketball for Mount Saint Joseph University in Cincinnati when she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare form of brain cancer. 90% of children with DIPG die within 18 months of diagnosis. Like a glioblastoma, this cancer offers no pity to its victims.

Brittany and Lauren both took their fight to the next level, although they chose very different paths. Brittany began to research "death with dignity," or physician-assisted suicide, hoping to die on her own terms and spare her family the pain of watching her decline. She lived her last months deliberately, cherishing time with loved ones and building memories. At the same time, she joined forces with Compassion & Choices, an end-of-life nonprofit advocacy organization, to share her story, one that has sparked a national debate. She allowed herself to be vilified by those who disagreed with her choice, feeling that her cause was worth the cost. She ended her life on November 1, surrounded by love and still in control.

The day after Brittany's death, Lauren Hill played her first college basketball game. Mount Saint Joseph games usually draw a crowd of 50 people. For this game, 10,000 tickets sold out in 30 minutes. Lauren had chosen to spend her final months raising awareness of DIPG, in the hopes that increased research could help those who come after her, children and families who need a voice. For the past several months, she practiced with her teammates and worked tirelessly for the cause that hit so close to home, all while undergoing painful treatments and suffering the debilitating effects of her disease. In the opening seconds of the game, she scored the first basket of the NCAA season, and the crowd erupted into cheers. Doctors say Lauren has weeks left to live.

I have thought a great deal this week about these two women. I find Lauren's story incredibly inspiring, much moreso than Brittany's, if I have to be honest about it. Fighting to the end always makes for a better story, especially when that fight includes two basketball teams and 10,000 fans coming together to make a dream come true for a girl who has decided to use her last weeks to help make possible the dreams of other children. One would have to be heartless, indeed, to find fault with Lauren and her end-of-life choices.

At the same time, I cannot quite bring myself to condemn Brittany. While I have watched a loved one suffer the agony of death, I have not personally felt the pain, the nausea, the terror, the disorientation, the loss of mental and emotional competence that comes with an illness such as hers. After 9/11 I told myself I probably would have jumped from the tower rather than allow myself to suffer death by fire. And I tell my husband that if I ever face severe dementia, I want to die alone in a nursing home rather than have my family see me in such a decline (although I have a feeling I would change my mind if that scenario ever became my reality). Is that really any different than Brittany taking a lethal dose of barbiturates only weeks or even days before the cancer would have claimed her life anyway?

I know so little about death. But one truth I have learned is that regardless of how many loved ones or journalists surround us, we each face the end privately, in the quiet moments of faith or fear, in the contemplation of our lives behind us and the possibilities ahead, or simply in the day to day struggle with illness and pain. Most of us get no rehearsal for our meeting with death, so it's game on when he turns his attention to us. We cannot with any certainty know how we will react or what path we will take, so perhaps we should spend a little less time condemning the end-of-life choices of others and a little more time following Lauren's example by living with dignity.

When asked what her daughter's epitaph might say, Lisa Hill responded with, "She never gave up, not even for a moment. She never strayed from her goals. She lived and loved with passion and desire." That is how one lives with dignity. Death will take care of itself.


  1. I really appreciate your take on this. You have a unique perspective, and I'm grateful to be able to see some small part of it through your eyes.

  2. Very thought provoking and carefully thought out essay. Again. Thank you.