Death & Dying | Hank Dunn

Compassionate, informed advice about healthcare decision making

Archive for the ‘Death & Dying’ Category

Blind Spots

Posted September 10, 2014 by kbrachle

Missed diagnoses. Denial. Blind spots.

What do they have in common?

It started a year ago. I was fishing behind my house on Goose Creek. I threw out a top-water lure—a “popper” in fly-fishing speak—and I saw two poppers instead of the one I had tied on my line. “That’s not right,” I thought.

“Mr. Dunn, I think you have had a stroke.”

So I went to an ophthalmologist and after many tests she said, “Mr. Dunn, I think you have had a stroke.” Then it was off to the neurologist and retina specialist, both of who ruled out stroke. The retina guy did say the retina in my right eye was tearing. There was nothing they could do about it at the time but we’ll, “keep an eye on it.”

In June the eye went black. I had two emergency surgeries to reattach a detached retina. Seems to be holding . . . which is the good news. The bad news is I am basically blind in the right eye. Light is coming in but the vision is very blurry and it probably cannot be corrected with a lens.

The double vision thing is still going on . . . most noticeable while driving. Often I put on a pirate patch on the eye to block out the distorted vision altogether.

I have learned a wonderful lesson about the human brain through all this. Most of the time I barely notice the blindness in my right eye. My brain basically ignores the bad eye and seems to dwell on the good information coming from the left eye. I function very well on one eye.

Doctors also have gaps in their knowledge

We know physicians sometimes fail to make a proper diagnosis and treat a patient for a condition that is really not the problem. Doctors also have gaps in their knowledge. Thaddeus Pope recently blogged about “Critical Gaps” in the legal knowledge of doctors practicing end-of-life medicine.

Like a good eye, they go with what they know. If there is an area of medicine for which they are unfamiliar they turn a blind eye toward it. The good eye is working so well.

In hospice and palliative care we see the oncologist who continues to recommend chemotherapy for a dying patient even though it offers no benefit, perhaps even makes life worse for the patient. They are blind to the benefits of stopping the chemo and shifting to improving quality of life in palliative care or hospice.

Patients and their families sometimes use denial as a blind spot. A patient is dying but no one considers death as a possible outcome of the current the disease. Believing that continued life is the only option they are “blind sided” when the patient dies.

Don’t get me wrong. Denial can serve a very good purpose for a time in helping people cope with a fatal prognosis. But it does bring in a huge blind spot in how one might spend their last days.

Can I “Like” a Death Announcement on Facebook?

Posted April 2, 2014 by kbrachle

Great article recently in the New York Times about “Millennials” (those in their teens and twenties) and grief. Grief in the age of Facebook, texting, Instagram, and selfies. “An Online Generation Redefines Mourning,” by Hannah Seligson appeared in the March 20^th edition of the Times.

Is there anything creepier

“My God, is there anything creepier than a post announcing someone lost a loved one and seeing ‘136 people like this’ underneath?” Ms. [Rebecca] Soffer said [in the article].

“The social norms for loss and the Internet are clearly still evolving. But Gen Y-ers and millennials have begun projecting their own sensibilities onto rituals and discussions surrounding death. As befits the first generation of digital natives, they are starting blogs, YouTube series and Instagram feeds about grief, loss and even the macabre, bringing the conversation about bereavement and the deceased into a very public forum, sometimes with jarring results.”

Here are some links I found through the article.

Modern Loss is a repository of essays, resources and advice that the founders try to edit so that it doesn’t sound glib, overly religious or trite. For instance, you’ll never hear, “At least they are in a better place.” (“Our least favorite line ever,” Ms. Soffer said.)

The Order of the Good Death is a group of funeral industry professionals, academics, and artists exploring ways to prepare a death phobic culture for their inevitable mortality. It was founded in January 2011 by Caitlin Doughty, a mortician and writer in Los Angeles, CA.

OMG . . . “Selfies at Funerals”

Hank

Straight to the Heart of Danger

Posted March 13, 2014 by kbrachle

[NOTE: I wrote this in 1999]

“Go straight to the heart of danger, for there you will find safety.” Chinese Proverb

It was meant to be a nice three-day hike in the Green Mountains of Vermont the first week of October.

When I was asked to come and speak at a conference on the eastern shore of Lake Champlain on the first Saturday in October I jumped at the chance. And I automatically thought of a way to squeeze in a couple days backpacking at the same time.

Everything seemed to be going fine. I got the speaking completed and then stayed with friends in Burlington on Saturday night. We dropped off my rental car at the north end of my hike and they dropped me off nineteen trail miles to the south at Appalachian Gap. Though it was eleven o’clock in the morning, it was still cold and the wind roaring through the gap added to the chill. Pleasantly, once I got into the woods and away from the gap, it was quite warm . . . T-shirt weather.

This is the most rugged trail I have ever hiked. Yep. More rugged than any 14er in Colorado. The high altitude in the Rockies makes the hiking harder but the trail itself in Vermont was just more difficult. Like straight up the side of a mountain, no switchbacks and over rocks and boulders and back down again. At one spot an aluminum ladder was chained in place to help the hiker past an impossible rock face.

Little did I know I would be depending…

Sunday afternoon was quite enjoyable. Occasionally I got a glimpse of the ridge stretched out in front of me all the way to my final challenge, The Camel’s Hump, ten miles away. I finally arrived at a lean-to shelter 5.5 miles from the highway. It featured an “open-air privy” which literally was a toilet seat in the woods on a wooden box over a shallow hole . . . no outhouse, no privacy. Two cousins from Maine, men perhaps in their late fifties or early sixties, had already occupied the small shelter. I found them quite enjoyable. They were out for two weeks and were planning on finishing in Canada four or five days later. Each night they played the totally incomprehensible game of cribbage. Ken, his wife and dog hiked the entire Appalachian Trail (over 2,000 miles) a couple of years ago. Little did I know I would be depending on these two men as my margin of safety.

I heard Ken and Bob rustling around about 3, 4 or 5 in the morning saying something about snow. At first light I found out what the commotion was all about. There was an inch of snow on the ground and it was still coming down. I made my coffee and ate my pop tarts. I stayed warm in my sleeping bag as long as possible and turned over in my mind my options.

I could turn back over the mountains I hiked the day before and try to hitch a ride to my car. I could stay put for a few hours and hope for a break in the weather. But if it didn’t break then I would have a late start on the day and I for sure wanted to have Ken and Bob hiking behind me. Or I could push on and hope to make it over the Camel’s Hump and on to the cabin on the other side. It was going to be an ambitious day in the best of circumstances. I packed up and pushed out ahead of my bedfellows.

At the end of hardest backpack day EVER

The trail continued to be as equally difficult as the day before . . . only more so with a layer of snow and ice. The sky did not let up and snow turned to sleet. As I crossed Burnt Rock Mountain, even finding the trail became difficult. It was marked with a painted blaze of white paint. On the treeless summit the trail marks were on the rocks beneath my feet. Rocks, snow, white trail marks, sleet, rocks . . . where the hell am I going? Later when Ken and Bob caught up with me they thanked me for finding the trail over the mountaintop.

To prepare for the event of losing my footing, I developed a technique of going down the rocky trail. In what appeared to be the slipperiest places I tried to position myself above a tree or bush that could provide a handhold. I once was holding on to such a tree and my footing gave way. I found myself leaning above perhaps a fifteen-foot drop over rocks to the snow below. I figured I had two choices. Let go of the tree and tumble down with my pack. Or I could unhook my pack and let it take the tumble without me. Duh????

As I put my pack back on while standing on terra firma, I actually felt quite satisfied that I can do this safely even if my pack takes a beating. Eventually Ken and Bob caught up with me. They had decided to stay in the cabin short of the Camel’s Hump. They suggested I do the same. The problem with that was it would leave me with an 8-mile hike the next day, through the snow, over the mountain and I had a 2:00 PM plane to catch. They correctly guessed that there was probably a short cut down to the road where I could hitch a ride.

My mother gave me a hard time

After my last letter describing my climbing the 14ers in Colorado, my mother gave me a hard time and lectured me on how I need to be more careful. I explained to her the precautions I felt I had made for my safety. So, Mother, again I made sure people knew where to find me and I always kept hikers behind me to offer aid if I were injured alone. I was prepared for the cold weather, after all it was October and Vermont. Even so, after three weeks, the big toe on my right foot has not fully recovered from a touch of frostbite . . . but it’s getting better Mom.

But you know, in the midst of the cold, snow, sleet, sweat and some anxiety, the walk was stunningly beautiful. The Fall leaves and the snow made quite a contrast. When the walking was easy I could hear the crunch of the winter ground beneath my feet. As I did walk out the last day, besides the leaves dotting the snow, there were animal tracks everywhere. Much of the walking was alone. The last day was especially serene as I walked toward the road. The trail was a gentle slope downward and I could drink in the wonder of the world.

We were discussing death anxiety among our patients

I am sure some of the enjoyment of such adventures is in overcoming discomforts and hazards. The gentle walk out was such a contrast to eight to ten hours of hard work the previous day. The warmth of dry clothes were such a luxury. My new hiking “partners” added more than just safety to my trip. Had I hurried back home after speaking I would have missed all that.

Fall leaves in Vermont snow

I flew home on Tuesday afternoon and had a hospice counseling staff meeting at 9:00 AM on Wednesday. We were discussing death anxiety among our patients, their families and in ourselves as we accompanied them on their journey. We knew we were among the privileged few who had the opportunity be close to this final journey yet are spared it leading to our own death or the death of one we love . . . at least at this time. One of my colleagues shared with us a quote she had learned in school and has never forgotten, “Go straight to the heart of danger, for there you will find safety.” We observe our patients going straight into the heart of danger and often they have a sense of safety. Being around this danger I feel safer. Not unlike the safety I felt walking in a New England wood blanketed with snow.

Hank

Choosing Death Over a Paralyzed Life

Posted November 13, 2013 by kbrachle

It is so easy to theorize about what you would do. What if you were on life support with the prospect of spending the rest of a long life as a quadriplegic on a ventilator. Would you say “good bye” to your wife who is carrying your unborn child and ask them to turn off the vent?

That is exactly what Tim Bowers did. Click here for the telling of the story.

Just over a week ago Bowers was hunting and fell sixteen feet to the ground from a deer stand. He fractured three vertebrae and damaged his spinal cord. The medical team advised his family that he would be paralyzed from the shoulders down and probably dependent on machines to breathe for him for the rest of his life. The family wanted to see if the patient could participate in the decision-making process.

“Do you want this?”

When he woke up from the sedatives that had kept him unconscious he could not speak but could answer yes-and-no questions. “Do you want this?” they asked, meaning “Do you want to be kept alive on this machine?” He shook his head “No.” They removed him from the ventilator and he died a day after the accident.

Well. Well?

This is what we in the medical community have been advocating. NOT that people be allowed to die. What we want is for patients to be involved in the decision-making that might end his or her life. They woke Bowers up and asked and he essentially said, “Let me die.”

As soon as I read this story I thought, “I know many paralyzed people on vents who might say he made the wrong decision.” Think Stephen Hawking. Sure enough I found one blogger who is paralyzed who took issue with how this case was handled.

Perhaps the decision came too soon after the injury. Law professor Thaddeus Pope wonders whether Bowers had “sufficient decision making capacity at the time he made the decision?” In states where physician assisted suicide is legal there is a waiting period from the first request for life-ending medication to a second and final request. Pope asks whether or not Bowers was fully informed about the “options and possibilities of life as a paralyzed individual.”

Give a little time

I tend to agree. Give a little time. If the patient persists in his request to be taken off the machine, by all means, comply.

Years ago I was called to the beside of a heavily sedated man on a ventilator after a heart attack. His wife explained that he had been on a vent before with his heart condition and wrote a living will so he would never be on a breathing machine again. I told the ICU nurse about my conversation and she said, “It is too soon to think about that.”

Well, he was able to get off the vent and out of ICU. I visited him a few days later. He was walking around his hospital room gathering things as he prepared for a transfer to another hospital to have a defibrillator implanted in his chest. I asked him, “How do you feel about being on a ventilator again?”

He said, “I am so glad they did?”

There you go.

The Death Cafe

Posted June 19, 2013 by kbrachle

Okay. You say, “Only a hospice worker would find the idea of a ‘death cafe’ exciting.”

These events are happening around the world. Yes, people sit down, have a cup of tea, coffee or adult beverage and talk about death and dying. If you are interested check out the website “Death Cafe.” Of course they are on Facebook and Twitter @deathcafe.

Let us deprive death of its strangeness

This all reminds me of Montaigne’s words from over four centuries ago.

“To begin depriving death of its greatest advantage over us, let us adopt a way clean contrary to that common one; let us deprive death of its strangeness; let us frequent it, let us get used to it; let us have nothing more often in mind than death. At every instant let us evoke it in our imagination under all its aspects….To practice death is to practice freedom. A man who has learned how to die has unlearned how to be a slave. Knowing how to die gives us freedom from subjection and constraint. Life has no evil for him who has thoroughly understood that loss of life is not an evil.”

Michel de Montaigne, c. 1580-1595

A reluctance to talk about death and dying

What I find curious is that Montaigne even had to make this statement. His contemporaries had to be surrounded by death all the time with the lethality of infectious diseases and high rates of infant mortality and high rates of mothers dying in childbirth. Yet, he must have observed a reluctance to talk about death and dying.

Now we hide death in hospitals and nursing homes and fortunately infant and childbirth deaths are rare. I can see why it is so easy to avoid death today. But even in the 16^th century talk about death could be avoided.

Lift a cup to death and dying.