Reflections in a Head Mirror

This Thanksgiving, medical bloggers around the world will all be posting the information below. It is well-written and powerful. I hope it is helpful to you and your family. I plan to share it with mine.

 -BHC

We make choices throughout our lives — where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73 percent of Americans would prefer to die at home, but up to 50 percent die in a hospital. More than 80 percent of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50 percent say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide — wherever and whenever they can … at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity — with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect ... and the incredibly positive impact we could have collectively. Help ensure that all of us — and the people we care for — can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to http://www.facebook.com/l.php?u=http://www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

Two new blogs are up and running on the Froedtert & The Medical College of Wisconsin Healh Blog Web site. 
 

First, Dr. Bob Gleeson has initiated the blog What Healthy People Do. Dr. Bob is an expert in motivating people to pursue healthy lifestyles and has spent years researching and lecturing about the topic. He is a new faculty member in the Department of Medicine and Director of the Executive Physical Program. I swear that I am only just a little jealous that Dr. Bob has already published a book.  

The other blog, INERTIA, A Therapist's Thoughts, is written by Physical Therapist Jeff Wilkens, MPT. Jeff and I spent a lot of time together over the past couple of months when I needed some physical therapy. (To learn exactly WHY I needed therapy, click here.) I am almost back to what I call “normal,” and am certain that Jeff will be as great a writer as he has been a therapist.  

Welcome to the blogosphere, Dr. Bob and Jeff!  


One last note: please check back here on Wednesday for a special post that will appear on many medical blogs around the world focusing on the need to talk to your family about end-of-life decisions. For a preview of the topic, click here.

Many attempts to communicate are nullified by saying too much.
-Robert Greenleaf  


As a cancer surgeon, these are some of my favorite things I have the opportunity to tell cancer survivors during an office visit:  

• “Things look absolutely perfect!”  
• “Unless I knew where to look, I wouldn’t even be able to tell where your cancer used to be.”  
• “The cancer has completely disappeared … the entire area has healed.”  
• “I do not see or feel anything that worries me at all.”    
• “We don’t need to have you return for another cancer check-up for at least six more months.”  
• “I can tell that you are taking great care of yourself.”  
• “It is terrific that you have quit smoking!”  

Physicians are not always the best communicators with either good news or bad news. When someone has cancer, I have learned to use the word “cancer,” and not words like “tumor,” “growth,” or “problem.”  

Similarly, when things are going well, I have learned to tell people good news in the strongest possible, positive terms.  Using the phrases listed above makes patients happy and lets them know that things are going well.  

And, I have to tell you, it makes me happy, as well. I LOVE giving people good news.

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The following is feedback received for this blog: I love to be the bearer of good news and to receive good news as well. Also, to be an encourager. - jan yen http://www.simpleawareness.blogspot.com

  

Every day we are engaged in a miracle which we don't even recognize: a blue sky, white clouds, green leaves, the black, curious eyes of a child -- our own two eyes. All is a miracle.
-Thich Nhat Hanh


One of my early childhood memories takes place on a Sunday afternoon. I am sitting on the floor playing with some toys that we have brought along from my house. My parents are visiting a distant cousin in her home. In my mind, I can hear the adults talking.

Despite the passage of nearly fifty years, I still remember how their conversation sounded. My parents, sitting on the edges of their chairs, are speaking in happy, positive tones, talking about friends and relatives.

In my memory, I recall whenever the cousin spoke, it would take her a long time to say anything. After every few words, she would have to pause and wait until a noise like the wind had stopped before she could speak again. I can clearly recall the rhythmic sound of the wind.

When she spoke, she would get through a few words (a sound like the wind) then speak a few more words (a sound like the wind) and each time she spoke (a sound like the wind) her voice would trail off (a sound like the wind) then it would return (a sound like the wind) strong again but trailing off (a sound like the wind) and as she spoke (a sound like the wind) I could see her looking at me (a sound like the wind) smiling (a sound like the wind) and gazing into the mirror (a sound like the wind) above her head.

In my memory, I look up and watch the adults. My parents are smiling and talking. The woman, however, lies in a long metal and glass tube connected to a machine with gauges, hoses, and dials. In order to see us, she must look up into the mirror fixed above her face. She is the only person I ever encountered in my life who depended on an Iron Lung.

The woman had lost her husband suddenly while they were both young. When she had contracted polio, her family had eventually been able to take her home to care for her. Now, a few years later, she survived, still dependent on the total care of her family and caregivers, locked in her Iron Lung for most of the day.

Our family visited her regularly, and my memory of those encounters eventually melded into a single image. I will forever recall sitting on the living room floor, holding my toys, looking into the woman's upside-down face in the mirror, and listening to the sound of the wind interspersed between her short phrases.

Thinking back over the years, I cannot begin to imagine what would have been going through her mind as she lay in that machine gazing back at me.

You've got to jump off cliffs all the time and build your wings on the way down.
-Annie Dillard    


She stepped back to admire her handiwork. It was remarkable. Months before, during the first office visits, he had been resistant to her sympathy and she had clearly been uncomfortable with her new role as caregiver. There was no way she was going to take care of him and no way he was going to let her.    

“Can’t someone come into the home and hook up the feeding tube three times each day?”  

“It is something you can both learn very quickly,” I reassured them.  

She was completely unconvinced. “Absolutely not! No way! What if some of the juices get on me? I can’t stand secretions! Just the thought of having to deal with mucus makes me sick!” He had made no attempt to change her mind.  

They were adamant. Arrangements were made and schedules prepared. The jobs were accomplished.  


As the cancer progressed, his resolve and his strength both weakened. She gradually began providing some of the care he needed. She learned to handle the tubing. She became more comfortable cleaning up after his accidents. She peeked under the dressings to assess how quickly his recurrent cancer was growing. She absorbed more and more of the daily duties — tasks she would have never dreamed of performing a few months before.  

On this day, I carefully removed the dressing to examine the growing ulcer. The opening between the mouth and the cheek skin which had started as a pinhole was now large and weeping. Covering the defect had become a frequent necessity. The gauze needed changing after he tried to eat anything and whenever the dressings became soiled.  

After I had finished examining and measuring the ulcer, I opened the drawer holding the supplies. I pulled out some gauze and a roll of tape and began by aligning the dressing with the edge of the wound. The first piece of tape gave way as soon as I placed the second piece.    

“Here,” she offered. “Let me take care of that.”  

And so this woman, who just a few months before could barely bring herself to look at his wound, carefully arranged the necessary supplies from the drawer on the countertop. Her husband relaxed and raised his chin, presenting to her the gaping defect in his cheek. As I watched, they performed a ritual of preparation, cleansing, and concealment. The outcome was perfect. Not a piece of gauze had been wasted. Not a strip of tape was out of place.  

She stepped back and wiped her hands. “There!” she said.  

He reached up and felt the edges of the dressing. “She’s become quite a nurse, don’t you think?”  

Indeed, I thought. I admired the dressing. By comparison, my attempt to tape gauze to his face had been clumsy. I realized that I had been dressing a wound. She, on the other hand, had been dressing a person. The ceremony of his wound care reflected their transformation.  

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The following is feedback received for this blog: I found this by way of GR's... A beautiful story and it reminds me of some folks I love very much. Thank you for sharing it. It's nice to know you see the beauty in all the other "stuff" you see daily. - Robin http://survivethejourney.blogspot.com