Where We Find Our Worth

It's in my nature to want to understand why some people take so long to die. Jenny was a middle aged woman who's primary cancer had spread to her brain. This is always a big deal, but more so for Jenny who prided herself in being the caretaker of the family.  A wife, mother, and career woman, she had balanced it all, keeping things organized for everyone in the family.

With the spread of the disease came trouble remembering details, or doing tasks, like operating her cell phone. Most people in desperation of loosing these key abilities would just give up. Not Jenny; though voicing her comfort and readiness to die, it was clear she was doing everything in her might to stay living.

As days turned into weeks this suspicion of actual un-readiness became clear. There were days she looked as if her transition had begun, only to rouse herself and force herself to eat a bite or two.

My last real conversation occurred a few days before she died. She complained to me of unrest, and I suspected terminal restlessness was setting in. In trying to clarify her feeling of unease, she suddenly said, "It's because I can't do anything anymore". I asked if she believed her worth as a human was based on the tasks she preformed.  "Absolutely" she said, putting as much emphasis into her response as her body would allow.

I could see now the reason for her struggle. She had defined herself by what she did, and no longer able to do things, she lost value. There was something deeper there too, as I explored with her, not only did she feel lost without being able to "do" things, she was questioning if she'd ever done enough to justify her existence.  I asked gently, "Are you able to believe that you have worth, simply by being you? Based not on doing, but on being?"  With utter despair, she shook her head no.

Like so many I meet, these big issues were left to be dealt with too late. In the next days she struggled against her bodies attempts to shut down. The nurses attempted getting family in to "give permission" for her to go, and her minister came to speak calming words. Ultimately, though, she didn't want to die.

I've seen the last minutes of dying, and she by far did it the slowest I've seen. Even when air stopped being exchanged, it was as if she willed herself to keep breathing - minutes of going through the motion without actual breath. Then when we felt surely she was gone, a muscle in her throat strained with spasm in an effort to mimic breathing for several more minutes.

The unrest we all felt in that room, the nurses, family, etc, was troubling. I wish Jenny had believed in her inherent worth, it would have made dying more peaceful.

A Good Death

What is a good death anyway? The word in Greek for good is "eu" and the word for death is "thanatos", so in Greek this becomes "euthanasia".  But "eu" also means easy - thus, often people think of a good death being synonymous with an easy death.  Of course, in our current culture, that word euthanasia is steeped with controversy and moral pull, leaving very little that is easy about the word.

I think for many, the idea of a good death does encompass something about easy; no pain, no suffering, no struggle.

This was not the case for Frank. Although this elderly gentleman had professed a readiness to die when he entered our hospice house, newly diagnosed with cancer, certain clues pointed elsewhere.  After about a week of avoiding sleep at all cost, I knew something was amiss. His avoidance of slumber was classic, he refused to get into his bed and spent 24 hrs a day in a recliner. He also, like my own 3 year old at home trying to avoid sleep, would continue to talk even when no one was in the room. The incessant speech was certainly meant to keep his brain from nodding off.

I headed into the room, with a mystery to solve. He had professed no fear in dying, so why did his behavior scream avoidance?  I played the normalcy card, speaking of patients in the past who had been afraid to sleep because they assumed they would then die. This struck a nerve, and in my waiting silence he confessed.

"I admit it. I am afraid...." then a long pause, and finished with "afraid of it being too easy." What came next were tears, for the fear wasn't in death, but in a death without struggle.  He felt that dying in his sleep would be a disaster, that dying with pain medicine easing his struggle to breath would be cowardly.  Then he told a story.

He was a veteran in WWII and had rescued a man who had been burnt, ending up injuring himself in the process. He found himself in a military hospital next to this man he rescued. Charred, with flesh falling off, this man looked Frank in the eye and told him, "You SOB, you better survive and be here in the morning".  Frank made the same valiant demand back. The entire night, he heard the moans and groans and cries of the burnt man. As morning dawned the agony filled cries ceased and nurses came, pulling a sheet over the mans face as he took his last breath.

Frank looked at me, and no further words needed to be said. That was a good death to Frank.  That was the noble death Frank was looking for.

The story and Frank's personal ideal of what "eu  thanatos" was for him, explained a lot of the decisions he'd been making while in our hospice house. He felt very guilty in the revelation. I reminded him that our job isn't necessarily to change who people are, but simply listen so we can understand who they are.

What's your definition of a good death? Is it easy? Is it noble? Is it going out with a fight? Something to ponder.

Art work:  The Soldier (1538) from "The Dance of Death" by Hans Holbein

War Baggage

There have been books and lectures written on veterans and the dying process.  I have witnessed a variety of cases.  The issue has to do with baggage left unprocessed. These are men and women who pushed down their experiences and suddenly on their death bed, the strength to suppress is gone and the issues come catapulting to the surface.  Practically this takes on two forms - either hallucinations and delirium that is out of control, or tears and weeping that won't stop.  The former is an attempt to still suppress, the later is the cleansing experience of finally dealing with the memories.

I've been meeting daily with a patient going through this catharsis.  He served in WWII, never spoke of his past and prided himself for being a "man's man" and showing no emotion. Suddenly he has found himself crying constantly. Everything out of his mouth comes back to war. He admitted to direct responsibility of the death of men, which has haunted him throughout his life. Today he said something that put in all in context.

My patient was injured in the war and therefor exited active duty by way of a hospital. The General in command of the hospital met with he and 4 others who were also injured to honor them with medals, as well as encourage them.  The final words he received from this high ranking official were, "Remember, the first time you ask for help...you've lost"

Through tears at this retelling, my patient said "and I never did ask for help"

Startling to me, this message of strength equated with self reliance. It explains a lot of the man he became and the man who sits now unable to stop the tears.

The message I share with him today is the opposite; that I see strength and courage in his ability to work through his past. That what he is doing now takes more of a "man" than hiding it away. That the tears are the evidence of healing and wholeness.  I think the first time you ask for help...you've won!

image from PBS.  Copyright © 2007 WETA, Washington, DC and American Lives II Film Project, LLC. All rights reserved