Everyone has a story about someone they know who failed to plan for the end of their lives – and left their loved ones struggling with difficult decisions at one of the most vulnerable moments of their lives.
- The wife who lies incapacitated in a hospital bed and her devastated husband of 40 years who has no idea what her end-of-life wishes are and is paralyzed with indecision
- The uncle who died young without a will, leaving a wife with small children to figure out the family’s finances
- The devoted daughter who must help her grieving father through the recent death of his wife
I founded DeathWise to help people avoid the unintended consequences of failing to plan for death. Our mission is to motivate people to talk about, make decisions, plan for their end of their lives, and then to make it official by documenting their wishes.
You may know that Tuesday, April 16th is National Healthcare Decisions Day. On that day, DeathWise is holding a special 24-hour online event called Get It Done! Our goal is to help as many people as possible complete an Advance Directive, a written statement of your wishes regarding medical treatment, in one 24-hour period.
Our event starts at midnight, when visitors to our special Get It Done! web page will be able to download our Wise Conversations Starter Kit, which includes the American Bar Association’s (ABA) Advance Directive – honored in 45 states – and a step-by step guide for completing it in a free PDF.
Our Wise Conversations program, made possible by a generous grant from the California HealthCare Foundation, trains coaches to meet with and guide small groups of people – families, friends and neighbors in living rooms and community centers –through the conversations about clarifying choices and the process of completing Advance Directives.
But that’s just the start! Trained DeathWise coaches will hold four live webcasts on April 16th to help you Get It Done! And our coaches will be standing by for 24 hours to take your phone calls starting at midnight on April 16th.
To find out more about how you can participate in this important event, please visit our Get It Done! web page.
Then on April 16th, join us and give your loved ones the gift of end-of-life planning!
The relatives have all gone home. The kids are going back to school. The holiday season is officially over. All that’s left is to decide what to do with those scented candles, golf neckties and socks with toes.
But there is one very important gift that may not have been on your list this year – either on the list of things you wanted or the things you wanted to give: the gift of planning… specifically, end-of-life planning.
Recently, the team at DeathWise interviewed a number of people about the benefits and challenges of thinking about, talking about and documenting their end-of-life desires. You can see and hear them here. (Scroll down to our video wall.)
What came through loud and clear was that planning is a gift for those left behind. We all have very personal opinions about what we would wish – or not wish – at the end of our lives. And it’s very important that those who love us understand what we want so our wishes can be followed, especially if we cannot speak for ourselves.
Finding the perfect time to “have the conversation” is challenging. Death planning is not a topic that usually appears at the top of anyone’s to-do list. And it’s not the most popular topic of conversation about the holiday dinner table. But taking the initiative with your loved ones to talk about your own and their desires during this profound life transition is a gift that will be treasured forever.
Family Dinner (Photo credit: terriem)
There are ways to get the conversation started. Every family has a story about a mother, father, aunt, uncle or lady next door whose failure to plan for the end of their lives caused conflict, confusion and heartbreak for their loved ones. And many also probably have a story about someone who made it clear to everyone what she desired medically, financially and even emotionally at the end of her life – and what a big difference that made to the people who cared for her.
There are also numerous articles being written on the topic that can serve as icebreakers. A recent opinion piece in The New York Times provided some good data and perspective on the value of the Physician Orders for Life Sustaining Treatment (POLST) approach to end of life planning. Then there are durable powers of attorney for healthcare and Advance Directive documents. You can learn more about all of these important legal documents here.
So as we begin a new year, consider a bold gift to the people you love. Start the Conversation. Make your Decisions. Communicate your Wishes.
And remember, DeathWise can help.
January 6th, 2013 in
One of the benefits of leading DeathWise is being able to hear people’s stories. This week alone, two friends were wrestling with the deaths of loved ones. Hardly a day goes by without someone asking for advice, recommending a book, movie or article or simply sharing a personal experience. And while each of us feels loss differently, there are some universal themes that connect us in a profound way. That is one of the reasons it is so uplifting to be involved in this mission of changing the conversation about death and dying.
Why we tell stories (Photo credit: bgblogging)
I travel a lot for my day job, and I often find myself on long plane fights. Most times, I do not engage with the people sitting next to me as I cherish the time to focus on my own reading, writing, working or sleeping. But on my last cross-country trip, I was drawn to the woman sitting next to me and I struck up a conversation.
Helen Quinn is an Australian-born world-renowned particle physicist who leads a fascinating life. As we talked, inevitably our conversation turned to DeathWise and she was moved to share her own experiences with the deaths of loved ones. Hearing her stories was an honor, an intimate connection that broke up the monotony of a long flight. The next day, I was touched again when Helen sent me a poem she had written on the passing of her stepmother, Elsie. Here is the first verse:
I never knew before, she said,
that it takes energy just to listen.
So we turned off the music that she loved,
so she could rest.
The entire poem is on the DeathWise website. I urge you to go there and read it, and I hope you enjoy this heartfelt piece.
Of course, we all know that poetry, art and even humor can be powerful ways of unlocking this very challenging topic of death. David Rakoff, a humorist and essayist, died a couple of months ago after bravely sharing his battle with cancer, which enabled many of his readers and listeners to engage on this tricky topic. A favorite quote of mine from one of his appearances on the radio show, This American Life, was his answer to the inevitable question, “Why me?”
Rakoff said: “You can’t win all the contests and then lose at one contest and say, ‘Why am I not winning this contest as well?’ It’s random.”
Another humorist, Zach Weiner, of Saturday Morning Breakfast Cereal Comics, offered a wonderful perspective on the importance of seizing life in a brilliantly conceived set of cartoon panels that begin: “Here is something true: one day you will be dead.”
One of our DeathWise team members found an emotional and thought provoking video tribute by a German couple, Walter Schels and Beate Lakotta, which documented life and death in photographs. The interview captures the impact the project had on Walter and Beate as artists. At one point, Beate said, “I have lost my fear of the dead. And lost my fear of being dead. If you look at last faces, you don’t get the impression that it is awful or shocking to be dead. It is quite peaceful and silent.”
Walter shared, “The most important thing is to be aware: that life has an end, to live your daily life and don’t speculate for anything else but today.”
All wise words… many creative approaches.
October 22nd, 2012 in
Is it just me or are you also noticing a lot more articles in the media about death and dying lately? Of course that’s thrilling to all of us at DeathWise. Our mission is to get more people talking about death so they can avoid the unintended consequences of failing to plan and make decisions about their end-of-life wishes.
Among my favorites is a powerful op-ed piece by Bill Keller, a writer and ex-executive editor of the New York Times, which the Times published on October 8th. His father-in-law, who lived in England, had been suffering and a recent surgery had not reversed his decline. Bill wrote eloquently about the Liverpool Care Pathway for the Dying Patient, which helped his father-in-law and his family through this trying time.
Bill quoted Sir Thomas Hughes-Hallett, who until recently was the chief executive of the center where the protocol that the Liverpool Care Pathway uses was designed. “It’s not about hastening death,” said Sir Thomas. “It’s about recognizing that someone is dying and giving them choices. Do you want an oxygen mask over your face? Or would you like to kiss your wife?”
Having been through this experience, Bill now understands the challenges of importing this kind of approach to our American healthcare system. But his admiration for it as an option for his beloved family member was clear. I encourage you to read the full article.
Day Hospice (Photo credit: Wikipedia)
Also this week NPR aired a segment by Terry Gross on Fresh Air called, “When Prolonging Life Seems Worse Than Death.” Judith Schwarz of Compassion & Choices discussed how her organization aids terminally ill people through their dying process. Palliative care has developed increasingly effective pain management and other capabilities that help eliminate the fear of dying a painful death.
Another piece I found especially moving was a video tribute of Philip Gould‘s last two weeks of life, which provides an extraordinarily intimate view of one man’s passing. A former political consultant, Philip’s own words are especially profound:
“Life screams at you with intensity.” “This is the most exciting and most extraordinary journey of my life.” “Only when you accept death can you free yourself from it… can you deal with it… can you move forward from it. Acceptance is the absolute key. At that moment, you gain freedom, power and courage. I knew that the purpose here now was to give as much love as I could to people who mattered to me.” “My life regained a kind of quality and power that it never had before. It entered a new zone… the death zone.”
What an interesting and provocative term: the death zone. It’s obviously a powerful state of being.
Perhaps we can all learn from people like Philip, Judith and Bill how to recognize the power of life and death… and find the courage to confront both, head on.
October 12th, 2012 in
A very good friend of mine died in June. He just went to sleep one night and did not wake up. Fred was 99 years old.
You may remember Fred. He wrote a story for DeathWise last year about his wife, Maygene. You can find it on our home page, along with a photo of Fred in a baseball cap.
Maygene preceded Fred in death by nine years. He was devastated by her passing, and he missed her dearly. But he was grateful for her last gift. Before she died, Maygene made Fred sit down and talk with her about her final wishes, which she documented in an Advance Directive.
At the time Fred told me, “I fought to be as brave as Maygene. I told her that I respected her wishes. I was sitting next to her, holding hands silently, when she died peacefully. She was a role model for me to be brave in life. And brave in death.”
(Photo credit: Fairywren)
In case you missed it, the cover story in the June 11, 2012 issue of Time magazine carried this blazing headline: “How to Die.” Writer Joe Klein beautifully shared the heart-wrenching story of how he supported his parents as they approached the end of their lives, and the burden of decision-making that was thrust upon him.
In the end, Joe was able to get the support he needed from the Geisinger Health System, which he said helped him “through some of the toughest decisions I’ve ever had to make.” The support brought him a measure of peace: “there was a gorgeous serenity in this moment – and there was a certain satisfaction for me too, surrounded by the caregivers who had helped me through this passage toward my own maturity, caregivers who really knew how to give care.”
We all can learn from stories… stories of bravery like that of Maygene and Fred… and stories about caring sons like Joe finding support from healthy medical systems like Geisinger.
Opening up the dialog about death and dying can only help us in these life transitions and keep us focused on what’s important as we live.
I encourage you to watch Joe’s powerful story on video.
And to think about the Fred in your life.
August 29th, 2012 in
Dan Munro, a healthcare IT innovator and Forbes magazine contributor, has joined the national conversation about death and dying with his recent blog post in Forbes.
At DeathWise, we’re grateful to Dan for reminding all of us that honest and open communication is at the heart of understanding and progress. We’re also thrilled to be mentioned in his post as one of several resources that exist to help people with end-of-life planning. And we’re pleased to be in the company of a new project from Pulitzer Prize winning journalist, Ellen Goodman. She has learned, as we have, that lack of communication around end-of-life issues often leads to unintended consequences that can be devastating — health-wise, emotionally and even financially.
Conversations!! (Photo credit: aforgrave)
The good news is that these consequences can be avoided — and it all starts by having “the conversation.” The mechanism we use to encourage these conversations at DeathWise is our new program, Wise Conversations, which I announced here in my blog last week. Wise Conversations brings families and friends together in their neighborhoods to formalize their end-of-life wishes in Advance Directives.
I invite you to take a few minutes and check out all of these new resources.
Together, we will change the conversation about death and dying in America.
August 18th, 2012 in
I am always struck by the power of dialog.
D-E-A-T-H is one of those words that stops most of us in our tracks, and dialog is often our last choice to engage. Somehow, this completely natural, inevitable life stage has become taboo. I am committed to changing that; committed to helping each one of us have conversations with our loved ones about our end of life wishes so that these can be known, documented and followed.
To that end, I am pleased to report that DeathWise has received a substantial grant from the California Healthcare Foundation for our Wise Conversations project.
Wise Conservations is a program aimed at helping individuals and their loved ones talk about their end of life desires before the end is near. Finding comfortable environments and forums to talk about this life transition and what it means to us is critical. Through Wise Conversations, DeathWise will bring this message to people throughout California in their own homes and neighborhoods, among family and friends. Our vision is that Wise Conversations will spring up all over California, and ultimately beyond – to any group of people, anywhere who would like to tackle this important conversation.
Wise conversation (Photo credit: makyron)
In my own home, the gathering spot for important conversations is the kitchen table. We have a beautiful living room, a comfortable den and a cozy porch. But the nexus always seems to be the kitchen. The ever-present teapot and bountiful baked treats made by my youngest daughter may be the draw. Or it may be the memories of many nurturing meals and dinner conversations that draw my family here.
My cousin visited recently and, as often happens in our household, our conversation turned to DeathWise. My cousin is living in another state far away from her family and wanted to share her wishes, concerns and need for help in understanding options available to her. She is healthy and hearty, but recognizes that anything can happen at any time. She wants to be prepared.
Working together we were able to use DeathWise resources and document her wishes using the DeathWise Map Tool and the new universal American Bar Association Advance Directive.
Despite the serious topic, far from being a morbid, our own “wise conversation” was uplifting. We shared intimate desires, preferences and fears, and through this process, my cousin was able to document her wishes in glorious detail.
Afterwards we celebrated with a beautiful bottle of champagne, toasting ourselves that we got through the conversation. Along the way, we enjoyed many laughs, a few tears, reignited some wonderful family memories, and clarified our goals and desires. It was powerful. And it brought us even closer than we had been before.
As we finalize details on our Wise Conversations program, I would love to hear from you about how you’d envision your own wise conversation happening.
Do you think that being able to meet in small groups with friends and other families might help you? What tools and resources could help your family turn what might be a difficult and anxious experience into a quiet celebration?
August 13th, 2012 in
Those who know me well know that one of the tenets I live by is “carpe diem” – seize the day. My nickname is “Annergy” and I face each day as a new opportunity to live life to the fullest.
As a result some people wonder how I could found and lead a venture like DeathWise. “Isn’t it morbid?” “Why would you spend so much time on the topic of death?”
Actually, for me facing death squarely opens up life. Over the past 18 months, since DeathWise was founded, people have shared inspirational stories about their own personal experiences with death, and what results is often a new resolve to live. The death of a loved one can sometimes reawaken awareness that life is magical, powerful and fleeting, and cannot be taken for granted. This is moving, motivating and reinforcing for me.
Recently, Maria Shriver shared in her blog the powerful story of Marie Tillman, the widow of Pat Tillman, the famous American football player who enlisted and was killed by friendly fire in Afghanistan. As all military professionals do, Pat wrote “the letter” to be opened in the sad circumstance of his death while in the line of duty. Marie shared Pat’s final wish for her – “I ask that you Live.” These five words are so powerful – especially as the final wish of someone who wrote it knowing that it would be read only after they had died.
English: This memorial was set up by fans of Pat Tillman outside Sun Devil Stadium where he played football for the Arizona State Sun Devils and the Arizona Cardinals. (Photo credit: Wikipedia)
We each have the opportunity to Live. And with that opportunity comes responsibility. For Marie, it was an awakening. “Since Pat died, I’ve thought a lot about what people leave behind, the mark we all make just by being here; big or small, it’s up to us.”
The key to Living is to remember our good fortune. The Living have the opportunity to make a mark. It is our responsibility to embrace it, not squander it. In the wonderful Pixar movie, Up, the elderly widower is inspired to Live again by his deceased wife’s note to him in her scrapbook: “Thanks for the adventure. Now go have a new one.”
As the founder of DeathWise, I don’t think we have to wait for our loved ones to die to inspire us. Let’s recommit to Living and to figuring out what unique impact we can have on this precious world.
I encourage you to read Marie Tillman’s story in its entirety.
I’m sure you’ll be just as inspired as I was.
DeathWise was founded to help reduce the unintended consequences of our society’s reluctance to talk openly about death. I’d had too many friends and relatives dying without communicating their end-of-life desires to loved ones – and the conviction that I was not alone in this experience.
It turns out I was right. The California HealthCare Foundation just released data from a poll of 1,669 Californians that highlights the gap that exists between what people wish for at the end of life and what actually occurs. Not surprisingly, 70% of Californians surveyed said “home” is their preferred place to die. But according to the California Department of Public Health’s death records, just 32% of Californians die in their homes.
Why the gap between desire and action? The answer may lie in the fact that just 25% of the California Healthcare Foundation’s survey respondents said they have written down their end-of-life wishes. This is despite more than three times that many acknowledging it is important.
Image via Wikipedia
And here is something even more interesting: Just 10% of respondents said they have shared their end-of-life wishes with their medical professionals. Among respondents 65 years and older, it was a little higher – 13% – but still shockingly low.
Not only is the gap between desire and action huge, it’s costly – from both a financial and emotional perspective. The cost of dying in a hospital is much more expensive than the cost of dying at home – and that’s where most of us would like to be. And how sad is it that more than two-thirds of Californians do not get what is likely to be their last wish before dying – to die at home in a familiar place surrounded by the people and the things they so treasured in life?
Each of us has many opportunities state our end-of-life wishes while we are still alive. Why is it so hard to do?
Death is frightening to many people and for obvious good reasons. Yet at the same time, death is inevitable. We somehow have to break through our fears to explore the topic and make our preferences known and documented, so that we do not burden ourselves and our families with the unintended consequences of silence.
“With end-of-life treatment, there is a clear gap between wishes and actions,” said Mark D. Smith, MD, MBA, president and CEO of the California HealthCare Foundation, which commissioned the survey. “People consistently stress they want to die comfortably and without pain. If so, the single most important thing they can do is to talk to their loved ones and physicians, and put their wishes in writing, something most Californians aren’t doing.”
DeathWise can help. DeathWise.org provides web-based content, tools, services and communities for people to help change the conversation about death and dying and document end-of-life wishes – their own or those of loved ones. All the critical decisions that need addressing at the end of life are organized in a straightforward, pragmatic way to guide individuals and their families through these challenging conversations and choices. And it’s free.
I invite you to visit DeathWise.org today and begin to make your end-of-life wishes known. It’s the only way to close the gap.
Image via Wikipedia
I’ve had the opportunity to attend several family gatherings recently – weddings, reunions, and of course, memorial services. Despite the varying reasons for each gathering, the highlights were shared time together and renewed relationships with loved ones across the miles. More and more, Americans are separated from their families. Getting together is a rare treat, requiring investment, both financially and emotionally. But it’s worth it.
At every event, we witness rites of passage as babies are born, children transform into young adults and elders pass on. These gatherings run the gamut of emotions – from shared joy over remembered childhood adventures to deep sadness for loved ones who are no longer with us.
At memorial services especially, the conversation naturally turns to what we each might want at our own memorial service if we were able to write the script. What’s great about that is we CAN write the script! We’re still alive! We can think about and make important decisions about care of the body and the location and types of services we want. These are not topics that come up easily in day-to-day life. But get a few people together at a memorial service, add some laughter, a few tears – and maybe even a glass of wine – and the conversation starts to flow.
At one of the gatherings I attended recently, a friend shared his own wishes and it was so endearing, I wanted to share it in this blog. He said, “I want a funeral just like our family’s 5-year old rat, Rat-a-Tat-Tat.
He went on to describe that Rat-a-Tat, as he was known affectionately, was the beloved pet of his two daughters – so loved that he was considered a member of the family – a fixture, so to speak, and sometimes literally on the children, who carried him around on their shoulders and cradled him in their hands. When Rat-a-Tat died, it was the first time the girls had experienced the death of a living being they loved. And it was traumatic.
To help his daughters cope, my friend decided to construct a small wooden box to serve as a coffin and had the girls decorate it with their memories of Rat-a-Tat and their hopes for him in the afterlife. This shared activity of drawing and painting on Rat-a-Tat’s coffin sparked an animated conversation about how he had affected each of the girls’ lives. Sharing favorite stories, depictions of scared visitors, individually remembered highlights and fond memories brought Rat’s life into focus. The joy Rat-a-Tat had brought to the entire family was honored, as was the sadness that each member of the family felt at his passing.
My friend then said that Rat-a-Tat was laid to rest in the back garden of the family home, safe and sound in the beautifully adorned coffin. A candlelit procession, complete with rose petals (and much sobbing), accompanied him to his final resting place. First one of my friend’s daughters and then the other offered a last round of memories and well wishes before the final shovel of dirt was placed over Rat-a-Tat’s coffin. This ritual allowed each girl to say good-bye in her own way, both creatively and verbally. It was very life affirming, as these kinds of experiences can be.
Hearing the story of Rat-a-Tat ‘s funeral, I had to agree that it sounded pretty great. I could certainly understand why my friend would wish such a glorious sendoff for himself.
We need to seize moments like these to think through the decisions we need to make for ourselves and discuss them with people who care about us in a safe environment. Even more important, we need to follow through and make it official by writing it all down. And we need to share our desires with people who are most likely to be there at the end of our lives – our loved ones and the medical professionals in our lives.