There are times when I am still astonished to think about my generation as the primary change agents of our culture. Over the last half century, we led the civil rights movement, the women’s rights movement, the gay rights movement. We are the pro-change generation.
Now, willy nilly, ready or not, we are embarked on the other huge social change: The Longevity Revolution. This is at the optimistic heart of the cry to Thrive. In just a century, Americans have added 30 years to their lifespan. Every day another 10,000 baby boomers turns 65.
We have years, decades added on to our collective lives, rich in possibilities. Just this year, with stunningly little fanfare we had two candidates for the presidency who were 69 and 70 years old. So we talk casually about 60 as the new 50 or 40, we are encouraged to sleep well, eat well, live well as a warranty on our long vital life.
What we are not told is that 60 may be the new caregiver of the 85 year old. We are rarely reminded that longevity does not preempt that famous headline in the Onion magazine: Death Rate Holds Steady at 100 Per Cent.
So forgive me l if I temper the longevity celebration with a minor chord. To thrive, to help ourselves and our loved ones live well to the very end, we have to break an old taboo. We need to share intimate and honest conversations about what matters to us when we approach the end. We need to have our wishes for end of life care expressed and respected. All through the lifespan.
The truth is that the progress and technology that has led to modern medical miracles and the ability to prolong life has also made it more likely that death will not be what we used to think of as “natural.”
Too many of us are facing a cascading and confusing number of medical decisions as we or the people we care face serious illness. Too many people we love are not dying in the way they would choose.
If the people in this community of Thrivers does everything to improve their health and nothing to improve the way the people we love are dying, we’ll have left a huge emotional hole. Indeed, if we are to tackle a problem that will literally effect everyone we need to change the way the people we love are dying.
So the longevity revolution has led us to this moment when we need to face the one difficult and crucial conversation which we have avoided for far too long, the conversations about how we want to live at the end of our lives.
This is at the heart of the work I’ve been doing since I helped found The Conversation Project five years ago. We are working to change the cultural norm from NOT talking about wishes to talking about them — -making this a normal part of the adult checklist of responsibilities.
I came to this work, this social change the way my generation has come to all the other major social changes of the past half century: telling stories. Often a story that has been kept under wraps. And yet so close to the surface and so powerful that when given permission, a tip, it comes pouring out.
I remember this from the women’s movement. When it began in the 70s everyone had a story about discrimination or harassment and yet everyone felt alone. It was only when those stories were shared, that we began to change society.
I too have story about end of life care. Around the time I turned 60, I went from being a working mother to a working daughter. My mom began a long slow decline. As my mother went into her 90s she was no longer able to decide what she would have for dinner let alone what she would have for medical care, I was faced with a number of medical decisions for which I felt wholly unqualified and unprepared. blind sided.
My mother and I could talk about everything. I once described her as a woman who would talk about my problems until I was bored with them. But the longest conversation we had ever had about end of life — -what she wanted, what she feared, was when she would say to me, “if I’m like that pull the plug.” Of course at the end of her own life, there was no plug. There rarely is. How often then this time I wished that I could hear her voice in my ear, telling me what she wanted me to do.
When my mother died, I found out that I was not alone. It turns out that everyone has a story of a good death or a hard death.
A group of us, caregivers, clergy, media, and people began to meet. We told stories of mothers who had futile chemotherapy in the last week of life, fathers who spent their final days in ICUs, families torn apart over what to do.
In surveys 70 percent of people have said they want to die at home surrounded by loved ones, but as many as 70 percent die in hospitals and nursing homes. "Home" is not just a place but a way that we want to end our lives…in comfort, with people who care about us, not in an ICU.
We asked each other, how could we make this easier? How could their survivors and in time our own survivors be left with less guilt or uncertainty about whether we had done the right thing.
The difference between the good and hard deaths often pivots on whether people had expressed their wishes, and whether those wishes had been in turn respected. First by family or friends and then by the health care system.
These conversations are not easy. The truth is that many people still engage in a sort of conspiracy of silence and denial. Parents are reluctant to “worry” their adult children; children are reluctant to bring up dying with their elderly parents. We like to say “it’s too soon,” when we know it’s always too soon until its too late.
So to all of you who haven’t had this “talk”: begin at the kitchen table, before there is a crisis, with the people we love and who may be making decisions with us or for you as the time comes.
As a helping hand, may I suggest the Conversation Starter Kit that we offer free on our website www.theconversationproject.org. It’s the user-friendly, non-medical guide that asks what matters to you, not what’s the matter with you. It’s about values, not procedures.
We offer questions like:
When you think about the last phase of your life, what’s most important to you?
Who do you want (or not want) to be involved in your care?
Do you worry that you won’t get enough care? Or do you worry that you’ll get overly aggressive care?
Do you worry that you won’t get enough care? Or overly aggressive care?
And perhaps most importantly: who do you want to make decisions for you if you can’t make them for yourself?
Over a million people have already used our guide but that is just beginning to empower the people we love, to take dying out of the shadows. We can’t prevent loss or mourning as part of the emotional rhythm of every life. We can’t control every eventuality with one conversation. But we can help our parents, our spouses, in time ourselves, to truly live to the end and to leave survivors whole.
Breaking this taboo is a huge cultural change but we have made such changes before. In my lifetime, we transformed the way we give birth in America. It wasn’t the medical establishment that it this; it was families and women who said, birth isn’t just a medical experience, it’s a human experience.
Now, in the midst of a longevity revolution with a passion to create new rituals and connections that help a community to, yes, thrive, we are recognizing that dying is also a profound and shared human experience. Its time to talk about it.
Ellen Goodman is a Pulitzer Prize winning columnist for The Boston Globe and a founder of The Conversation Project www.theconversationproject.org
Originally published at medium.com