*** Time for this post? Reading…2 minutes. Viewing…19 minutes. Taking it in…as you wish.
BJ Miller, a hospice doctor, says, “At the end of our lives, what do we most wish for? For many, it’s simply comfort, respect, and love.”
Yet the statistics show that most of us in our over-medicalized Western culture do not die that way. And it’s easy to see why.
Doctors are trained to keep us alive, There are a lot of treatments they can offer before giving in and saying the dreaded sentence, “There’s nothing more we can do.”
Now, let’s be clear. The blame doesn’t lie solely on the shoulders of doctors. We, the people who are offered these treatments, may not yet have come to terms with the fact that we will surely die sooner or later. In this mindset, we aim for quantity of life and lose sight of the quality of life we may really be aching for.
When we are uneasy about our inevitable death, we grasp at any possibility that’s offered to us. Yet, as Stephen Jenkinson says, the “more-time” bargain we make to avoid the end of life has consequences we never imagined.
Quality of life as we near the end…
To some degree, quality of life is subjective. But there are certain common threads. And that takes me back to BJ Miller’s thought that at the end of our lives what we most wish for is comfort, respect, and love.
If you’ve ever experienced hospitalization, you’ll know that comfort, respect, and love are not their focus. Hospitals are geared toward making us better, whatever it takes—chest compression, powerful drugs, surgery, chemotherapy, and everything in between. But life-saving care is not what’s needed by a person at the end of life.
We need other places and other philosophies to guide end-of-life care.
BJ Miller is a palliative care physician who has dedicated his career to understanding how to provide a dignified, graceful end of life for his patients. This moving TED Talk asks us to consider—and perhaps reconsider—how we think about death, and how we honour life.
*** Time for this post? Reading…7 minutes. Thinking about why you keep what you do…optional.
I know people who feel they must purge their living and storage spaces before they die. Their intention is to make it easier for their family to wrap up their affairs. What a shame!
True, it might help the family dispatch the estate efficiently. But what will they miss out on?
My take on that…
I think there’s something to be gained when others go through what we leave behind. They may learn things about us that they didn’t know, remember long-forgotten events, and gain perspective on who we were.
The way I see it, this is part of our legacy—and we are shortchanging our survivors if we leave a stripped-down version of our life.
To be clear, I’m not advocating for leaving an unholy mess. Like Margareta Magnusson, I think I should take responsibility for what I keep. And part of what I want to keep is those things that illustrate my history. For example…
Footwear too cool to dispose of…
When my kids clean out my place, they’ll find a couple boxes of shoes that have never been on my feet. They’re from my days as a wardrobe designer for community theatre productions.
Shoes were a challenge on a low budget, especially for period shows. I did a lot fo sourcing in thrift stores. When I saw something unique, that I’d be unlikely to find again when it was needed, I made the purchase on speculation. Most of them cost $1, or half that on a sale day.
What my family will find in the boxes…
For those who love shoes like I do, here’s a closeup look…
These women’s shoes remind me of what grownups wore when I was a child.The black rain boots and oxfords were used in two shows. Probably no one noticed but me, because they were subtle additions to the costumes. But to me, they were like icing on a cake—the finishing touch that makes it special.
The two shoes in the next photo make my heart sing, and I was very happy to find they were useful more than once.
The red sling-backs are my absolute favourite. I think it’s because the six-year-old that still lives in me thought they were soooooo elegant when she saw them in magazine pictures. Of course, no one she knew ever wore anything that stylish!
Anyway, I keep these out of the box, on display so she can enjoy them daily. (If I had room, I’d keep all the shoes on display. But I don’t, so that’s why my kids will find the boxes. Now that I think of it, I’m going to put a copy of this post in the box, so they’ll know why I kept such things.)
The men’s shoes also have stories. Like the red shoes, brown leather slippers were never worn by people I knew, automatically making them intriguingly exotic in my mind.
The felt boots behind them, just like those my Grandpa wore, were perfect in “Of Mice and Men.”
I created the spectator shoes for “Guys and Dolls” by painting light shoe dye on the main part of basic black brogues. A small touch, but soul-satisfying!
These two pairs of oxfords are custom-made shoes that would never fit anyone but the intended wearer. The pair on the left is the narrowest pair of men’s shoes I have ever seen! It’s hard to convey in a photo. The shoe is size 11, and only 3 inches (7.6 cm) wide. That’s 25% narrower than the average width for a size 11 shoe.
The pair on the right is HUGE, which is why I set them on a ruler. To the toe cap, minus the protruding sole, it is 13 1/2 inches (34.3 cm) long. North American shoe size charts go up to size 17, which is 13″ (33 cm) long. At 1/2 inch (1.3 cm) longer than that, this pair of shoes is size 18.
Other things they’ll find in my storage room…
Archive of my work ~ Printed materials I produced over the years, including books, pamphlets, food photos, and project proposals. They saw bits and pieces of these things as they were growing up, but this gives them a big picture of the body of my work.
Memorabilia of my kids ~ Artwork, cards they gave me, notes sent when they were away, and miscellaneous bits. I think that discovering these will connect them with their younger selves and reinforce how special they are to me.
Empty boxes, because you never know when you’ll need them. And besides, they’ll be useful when they pack up my things to move them on.
Milk jugs filled with water, which could be essential in an emergency. A bit of a nuisance for them to dispose of, but water can easily be poured out and the empty jugs can go into my recycling.
Some junk, but not too much.
What are you storing?
Things with stories? Things you think your family might want? Stuff-and-junk? What will your family learn about you as they go through it? What will they learn about themselves? Please share…
***Time for this post? Reading… 8 minutes. Viewing…12 minutes. Exploring what is deeply satisfying to you…as long as it takes.
It’s not easy to know when to call it quits, to speak up and change course when we’ve had enough. This bold action requires us to think deeply about what’s important, and to take a stand for it…even when those around us have a different opinion about what we should do.
We are not enculturated to live—or die—on our own terms.
How much is enough?
… “enough” is not a number—it’s what is deeply satisfying.
The above quote is from Conscious Spending, Conscious Life, my book about using our resources intentionally. It helps us all navigate the consumer culture without being consumed by it.
As I learn more about the way we die in the West, I keep seeing parallels between consumption of consumer goods and our engagement with healthcare services. In both cases, we can end up being used by the system rather than served by it.
One of the primary skills for making our way through the consumer culture is the ability to discern when enough is enough. Conscious awareness is what saves us from being used by the system.
We must become clear about what we consider fundamentally important for a good life. In most cases, this is found in our values—not in things or pills.
Healthcare is highly driven by consumerist values.These days, many treatments are possible and we can be swept along a long road of suffering just because there’s something more to try.
Medical professionals are trained to save lives, which is exactly what’s needed for dealing with emergencies. But different thinking is required when the medical issue is a chronic condition, terminal illness, or the frailty of old age. Our doctors may encourage us to try everything they have access to in hopes that something “will work” even when rescue from our conditions is not possible.
Pharmaceutical and equipment manufacturers have a vested interest in keeping us looking for the next new thing. We, as consumers of healthcare, can get caught in the thrall of doing anything and everything to buy more time—without thinking about the price we might pay in unintended consequences.
Rarely are dying people invited to think about what’s important to them and helped to determine which available options will let them live out their lives in alignment with what they really value.
Here’s an exception…
Dr. Atul Gawande is a surgeon, public health researcher, and author of the #1 NY Times bestseller, Being Mortal: Medicine and What Matters in the End. Here’s a description from notes about his book:
Modern medicine has transformed the dangers of birth, injury, and infectious disease from harrowing to manageable. But when it comes to the inescapable realities of aging and death, what medicine can do often runs counter to what it should do.
Through eye-opening research and gripping stories of his own patients and family, Gawande reveals the suffering produced by medicine’s neglect of the wishes people might have beyond mere survival.
To find out what those wishes are, we need to ask. We haven’t been asking, but we can learn. Riveting, honest, and humane, this remarkable book, which has already changed the national conversation on aging and death, shows how the ultimate goal is not a good death but a good life—all the way to the very end.
This is not a helpful question…
What do you want at the end of your life?
The following are better options because they get at a person’s priorities. Medical professionals should be asking them, but we can ask them of ourselves , and adult children can pose these qustions to their parents.
Ask these questions repeatedly over time, because priorities change as a person’s condition changes.
Well…what’s your understanding of your condition?
So….what are your fears and worries for the future?
What are the goals you have if your health should worsen?
What trade-offs are you willing to make—and not willing to make?
Let them have the damn cookies…
Suffering = No one asking you what matters to you, but telling you how they’re going to treat you.
When doctors don’t ask what matters to people, what they are doing to them is out of alignment with their priorities.
Medicalized nursing homes do not serve us well. Instead, they should create the freedom for people to make bad choices, talking to them about those choices when necessary.
Isn’t this what we all want? The tricky part is nurturing the mindset—individually and collectively—that will create a climate for our end of life to be humane instead of medicalized.
This brings up issues of quality of life that we should all be thinking about. Knowing what a good quality of life looks like to you will help you decide when you want to get off the treatment train.
It’s not a question of either fighting or giving up. The way through is for you to decide what is worth fighting for…and it may not be a longer life. It may be a life that best suits you in the time you have left. And only you can know what that will be.
Reset as things change…
Your condition will change and so will treatment options. As new treatments are presented, take a moment—or a day—to reset. Remember what you value most and consider how each option will align with it…or won’t align.
Give yourself permission…
I hope this perspective has given you things to think about, and permission to take a stand for what is right for you. We all deserve that.
*** Time for this post? Reading …1 minute. Viewing …19 minutes.
Enculturation is the process by which individuals learn their group’s culture—through experience, observation, and instruction. It is how traditions evolve.
We all become enculturated, that is, steeped in the way things are done in the society in which we live. It’s what we know, what we get used to, what we think is normal.
How WE do death isn’t the only way…
Caitlin Doughty is a licensed mortician and death acceptance advocate. She is founder of the nonprofit The Order of the Good Death, author of three books, and operates Undertaking LA, an alternative funeral home.
And here’s what they do in South Carolina when someone “has passed”…
A master of this subject [thinking about dying] —a self-described dealer in the “death trade” for over 20 years is Canada’s own Stephen Jenkinson. He has written a number of books – the last one called Come of Age and an earlier one entitled Die Wise.
He has a website called orphanwisdom.com and he is currently on tour through North America doing a presentation called “Nights of Grief and Mystery” with a musician named Greg Hoskins.
We recently attended this in Calgary—me and 5 family and friends who were not really looking forward to an uninterrupted 2.5 hours where entry was not allowed after the doors closed, with no intermission . About all I can say is that no one moved for the fastest 2.5 hours in my life and none was “unmoved’” by the content. My husband, who has a reputation for being able to sleep through ANYTHING shortly after it begins and wakes up as the clapping starts, was awake for the entire thing! He even said, “that was really good”!
I’d certainly encourage you to look at him as a resource. He has an NFB film about him and his work called Griefwalker which you can find on YouTube. He also teaches on occasion at Hollyhock Retreat Center on Cortes Island and teaches at his farm in Ontario.
As it happened, Stephen Jenkinson had not yet crossed my path—and I could hardly ignore such a compelling recommendation. Having listened to him on video, today I’m sharing an excellent interview that gives you a sense of what he’s about.
This is such a rich conversation, it’s impossible to summarize. Here are some things that leapt out at me…
The palliative care system is technologically driven and it shapes our credo of end-of-life care, which is—If you can, you should. It’s a philosophy that has no upside.
The “more-time” bargain we make to avoid the end of life has consequences we never imagined.
We have messed with the idea of “your time to die.” And so, we don’t die when we are dying…
Pneumonia used to be called “the old man’s friend.” Now it is treatable—and treated in the elderly—so we can’t even die from pneumonia anymore.
Our description of a “good death” is dictated by the attributes of the death phobia of the culture…
We should be asking, not what can we do about dying but what does dying ask of us?
Your obligation as your body’s trustee is to learn its ways, including its limits and, later, its dying too…
The Balinese tend to their dead in a morning ritual. The evidence of it is everywhere. I encountered this young woman on an early morning walk in Bali, holding a tray of beautifully prepared food that she was about to put out.
What caught your attention?
Stephen Jenkinson does not give us the same-old same-old. What caught your attention? Did you find things to think about?
*** Time for this post? Reading…3 minutes. Listening…10 minutes. Considering…at your leisure.
The death phobia that pervades our consumer culture does not serve us well…
We get to indulge in death phobia because commercial interests are right there, ready to step in and do the difficult things for us. In this way, we avoid a lot of discomfort.
But we pay a price for our comfort…and it’s not just in money. We become death illiterate, with no language for what death asks of us and no emotional capacity to recognize that death is asking something of us.
The cultural story…
Research has shown how important our attitude is, both individually and collectively. When enough of us hold a similar point of view, it becomes the cultural story. I like the term meta-narrative—the big over-arching story—because it conveys how pervasive the cultural story about anything can be.
When it comes to death, here are some of the attitudes Westerners are steeped in.
Dying is something that happens to us; it isn’t something we do.
When you’re dying, you’re not behaving right—You’re supposed to live.
We are victims of death.
We should battle against death as long as possible.
Good things should never end.
Dying is akin to failing.
[tweetshare tweet=””[tweetshare tweet=”Attitude is the most important decision you’ll make today. ~Paul Dughi #death #dying” username=”LauranaRayne”]
Not all cultures tell the same story about death…
Eastern philosophy, for example, has different perspectives that have gradually come into our field of view. The most notable catalyst for this awareness was when The Beatles went to India in 1968 for a training course at the ashram of Maharishi Mahesh Yogi.
Although the most famous, The Beatles were not the first Westerners to become intrigued with the Eastern view. Alan Watts, who died in 1973, was a British-born philosopher, writer, and speaker. He’s best known as an early interpreter and popularizer of Eastern philosophy for a Western audience.
Watts moved to the United States in 1938 and began Zen training in New York, then earned a master’s degree in theology, and was an Episcopal priest before joining the faculty of the American Academy of Asian Studies.
I find it interesting to listen to him, with his unique blend of East/West understanding. It always intrigues me to see how things that seem opposite—like East and West— can be wrapped up together to make a bigger, more coherent and dynamic whole.
Here are some of Alan Watts’ thoughts about death and dying…
“…just the end of you as a system of memory.”
Now isn’t that an intriguing thought! For more of his philosophy that helps us think in another way, here’s a compelling video about accepting death.
*** Time for this post? Reading… 9 minutes. Viewing… 4 minutes. Doing something to unhook yourself…up to you.
We live in a time when dying has been sanitized and commercialized—like most of our life experiences. In our consumer culture, commercial interests have taken over all the difficult things we used to do ourselves when someone died. In return, we get to detach from the experience and feel less discomfort.
That wasn’t always the case. Here’s a recollection shared by Nora, a reader who is now 90 years old.
My first direct experience [with death] was probably around the age of 5 or 6. In those days people still often dealt with the death of a family member at home, and my mother was often called on to help with washing of the body. In this particular instance a baby had died and I accompanied her to the farm where the family lived. They were friends. I watched as the baby was washed and placed in a small wooden box, then taken out and buried on the property. I didn’t see the burial, but can’t recall why. I only remember that I wasn’t scared and thought it was completely natural.
That had changed by the time the Baby Boomers were growing up in the 1950s and 60s. By then, the funeral industry was in full swing. Death was outsourced and we didn’t learn, as Nora did, that it is completely natural and not scary. In the absence of such experience, we’ve become fearful of the unknown and susceptible to the death phobia that pervades the culture around us.
Death phobia serves commercial interests…
Here are just a couple of ways that come to mind:
Death phobia causes us to take measures beyond all reason to stay alive or keep a dying family member alive. This keeps hospitals, cancer clinics, nursing homes, pharmaceutical companies, and high-tech medical manufacturers in business. I find it interesting that more and more of the people working in these places are speaking out—saying that we’ve got it all wrong, that we need to view death differently, to see it as a natural process rather than a medical condition. Professor Ken Hillman is one of the front-line people who is speaking out. He’s an Australian intensive care physician who has seen a lot of people near the end of life. In his view, dying in the elderly is being hijacked. People end up in and out of hospital to treat failing organs or a broken bone caused by a fall. What the system does not recognize is that frailty is a natural condition that precedes death, and the elderly should be assessed in terms of frailty, not malfunctioning body systems. You won’t want to miss the TED Talk of this sensible and compassionate man. His recent book is A Good Life to the End.
Death phobia creates the climate where funeral homes are able to profit substantially from the susceptibility of grieving people. They know to manipulate us into spending far beyond our original intention—such as paying $10,000 for a casket that goes directly into a crematory furnace, or paying for unnecessary embalming of a body that will be cremated. If you think my attitude is too cynical, watch this undercover investigation by Canada’s CBC Marketplace.
The good news is…
There is movement back to sanity and we, the people, are no longer allowing the consumer culture and economic system to completely co-opt our experience of death.
Low-cost funerals are available if you do some basic consumer research. It’s easy with the internet to do some initial screening—starting with a search for “low-cost funerals” followed by your city name. When you find funeral providers that offer the level of service you want at a reasonable price, check their reliability. Read the testimonials on their website (and wonder why they don’t have any if they don’t). Check out the company at the Better Business Bureau. There you’ll discover how long they’ve been in business, their BBB rating from F to A+, and what customers have said about their experience with that company. After this pre-screening, call companies that still interest you and do a telephone interview. By then you’ll have enough information to make your selection. In my case, I selected a low-cost provider and got what I wanted for $1600. A full-service funeral home, with a chapel and reception area I wouldn’t be using, gave me a quote of $4100 for exactly the same services (simple cremation). It takes some time up front, but the reward is that you save thousands of dollars by not leaving it to your family to make a last-minute decision after you’ve died.
Memorial societies and cooperatives are not-fo-profit organizations made up of members who have joined together to obtain dignity, simplicity and economy in funeral arrangements. Instead of directly offering funeral services, they negotiate with existing funeral homes to obtain reduced rates for their members. You pay a modest fee to join, and then make your arrangements with one of the specified funeral homes. The selected providers have funeral homes that offer a full range of services including large chapels, reception rooms, and on-site parking. For some people, this is an advantage over low-cost funeral providers, which usually do not have these facilities and cater to people who have their own locations (home or religious building) for the service and reception.
People are befriending death so they are more comfortable with planning for its arrival instead of avoiding thinking about it.
People are talking about death over dinner across the world. Between 2013 and 2016, more than 100,000 death-over-dinners were held in 30 countries. Imagine that!
I love how they are taking charge! And other people must too, because there are now coffin clubs throughout New Zealand, in the UK, and in Tasmania.
The Coffin Club was started in 2010 by Katie Williams, a former palliative care nurse, to personalize funerals and drastically reduce cost. But, she says, the biggest attraction of the Coffin Club movement is companionship. Watch this short video and don’t miss the “chook-in-the-box” around the 4-minute mark.
So…has this inspired you in any way—even a small one—to see how you can unhook your death from the dictates of the consumer culture? I’d love to hear…
’I’ am just a collection of particles that is arranged into this pattern, then will decompose and be available, all of its constituent parts, to nature, to reorganize into another pattern. To me, that is so exciting, and it makes me even more grateful to be part of that process.
This talk was posted in April 2018. Emily Levine died on February 3, 2019. Emily’s Universe carries on.
I know I’m getting old when I find myself saying, “What on earth is this world coming to?!!” It’s a fair bet that I’m not alone in this.
It’s easy to get lost in the heaviness of that perspective. In those moments, I find a breath of fresh air in Jeanne Robertson. Today I’d like to share her with you…
Jeanne Robertson is an American humorist, motivational speaker, and a former Miss North Carolina and physical education teacher. You can hear many more of these short clips on her YouTube Channel. Here are a few more samples of what you’ll find there.