More to dying than meets the eye—two researchers talk about what they learned.

***  Time for this post? Reading… 3 minutes. Viewing… 12 + 59 minutes. 

I loved the gentle way that Dr. Kathryn Mannix, in a previous post, described how the body shuts down as we approach our end of life.

I’m also interested in what happens as my soul meets death. In a way, I feel as if I actually know, but just haven’t quite remembered yet. So I’ve been looking into it in hopes of jogging my memory. Today I’m sharing what a couple researchers have found out about deathbed phenomena.

Martha Atkins is a death researcher and educator. In this TED talk, she describes deathbed phenomena based on what she learned from both the dying and bedside witnesses. It’s her view that this knowledge can bring comfort to patients and caregivers by helping them understand what they are experiencing. Her book is Signposts of Dying: What you need to know.

Dr Peter Fenwick is also a researcher in end-of-life experiences. He’s a British neuropsychiatrist who worked in hospice care and documented many fascinating phenomena including premonitions, clocks stopping at the time of death, relatives seeing light in the room of the dying and shapes leaving the body, visions of the dying and terminal lucidity. He is co-author of The Art of Dying.

This next video is a long one, but interesting for those wanting to know more. He starts out describing neuroscience and a theory of consciousness based on his research into near-death experiences. End-of-life discussion starts at 15:25 if you want to skip ahead. At 19 minutes he begins talking about what you might expect.

Dr Fenwick concludes by saying that the way we medicalize death, sweep it away, don’t talk about it, is producing a culture  in which we deny our responsibility. Yet, what we really should be doing is starting with the children. Bring death into the open, discuss it, teach them that it’s a normal part of living.

When children know about death…

Be prepared. When they know, they might say surprising things. This is one of my favourite grandchild stories.

When my older granddaughter was about seven, we were looking through a photo album. As she oohed and aahed over her mother’s wedding dress, I said, “I made that dress, you know.”

“Ohhhh,” she said with wide eyes. “Will you make mine?”

Before I could reply, she paused and I could almost see the wheels turning in her head. Then she quickly added, “If you’re still alive then.”

Matter-of-factly. No drama. The way it should be.

Your thoughts about end-of-life phenomena or about teaching children about death?

When is enough enough?

***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.

Medicalization…

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?

Helpful questions…

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.

For a fuller version of Atul Gawande’s approach, watch this lunch-hour presentation at Google. I found it well worth the time.

A good life…all the way to the very end.

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.

Your thoughts?