On the “Good Death”: Part One

I remember once talking to a woman whose husband was dying (this tends to happen when you work in hospice). He was not, as we say, “going gently into that good night.” He had some form of dementia, and had become mean and demanding and aggressive and miserable.  As a result, he was making her miserable, too. She was so hurt by all of this. “I don’t understand,” she said. “We are at the stage in our lives where we have had a lot of people close to us die. I have had so many friends describe these beautiful scenes toward the end of life, where everybody comes closer together, and there is love and sorrow and peace. There are heartfelt goodbyes. They made dying sound like it was just wonderful. But my husband…all he does is scream at me. Terrible, awful things. What am I doing wrong?”

*******

My last grandparent, my paternal grandmother, died a few years ago.  She was in hospice on the other side of the country.  She was in her mid-90’s and, as they say, “sharp as a tack.”  She was ready to die, and when her time was drawing to an end, she started to slip away.  I happened to fly in to see her on the day she perked back up, and I got to chat with her a bit, telling her I loved her and saying goodbye as she enjoyed the chocolate ice cream she had requested.  My uncle, aunt and I took turns staying with her.  She occasionally had pain which the able hospice team was able to control.  She slipped back into her coma and died in the middle of the night with her youngest son at her side.  Her passing was peaceful: A quiet, dignified end to a quiet, dignified life.  I remember thinking that I hoped to be as lucky in life and in death as she had been.  In my mind, she had a very “good” death.

My maternal grandmother died about ten years earlier than my paternal one.  She had dementia, most likely caused by a series of small strokes. My parents, who worked full-time,  moved her and my grandfather, who was completely bed-bound and unable to communicate due to a massive stroke, into their home and hired a full-time caregiver.  While it worked, it was very stressful (and expensive) for them (I was out-of-state for all of this).  I had been very close to my grandma, who had been both devoted and independent.  She had regressed to a child-like state, and was often confused and distraught.  She could usually only be consoled with sweets (clearly, I get it from both sides) and a stuffed teddy bear.   I remember sitting on the stairs, tears running down my face, as I watched this once proud woman nervously rock back and forth, muttering to her bear.  She died at home, with hospice.  While that sounds nice, her death wasn’t.  She probably suffered a final stroke, and she hemorrhaged to death.  My parents were there with her, and that last scene of terror will haunt them forever.  For us, there was no dignity in her death.  For us, her death was not “good.”

 ********

Back when I was in graduate school in the late 1990’s, the book Successful Aging was published.  It was written by two famous researchers in gerontology, and it distilled years of studies into some practical advice for the rest of us.  We do not have to be tied to our genes, the book promised.  We have control over how we age.  If we do it right, we can “age successfully.”  It was a well-researched, helpful book, and it provided some very good advice.  I don’t remember most of that advice (I’m guessing “regularly stealing the Reese’s peanut butter cups out of your kid’s Halloween stash” wasn’t in there),  but the book continues to stand out in my mind.  What struck me way back then and continues to strike me now is the basic premise of “success.”  Okay, say you do your allotted amount of aerobic exercise and eat lots of Omega 3’s and build good, solid relationships and follow your passions.  When you sail through your 80’s and maybe even your 90’s without heart disease or cancer or dementia you can pat yourself on the back and give yourself a little credit.  You succeeded based on your hard work.  Nice job.

But wait a minute.  If you succeeded, what does it mean when your sister is diagnosed with cancer, or your best friend gets dementia?  They clearly didn’t succeed.  Did they….fail?  And, if you succeeded because you worked hard, did they fail because…they didn’t?

Was it their own fault?

******

This line of thinking crops up at the end of life, too, on different levels.  The hospice movement has come a long way in furthering our acceptance of death as a natural process.  It has helped to erode the notion (still held in some quarters of the medical community) that death is synonymous with failure.  That’s a truly wonderful thing, especially given that we are all going to die (eventually).  In hospice, you often hear the phrase “death with dignity.”  I think that’s a nice idea, and given the choice, I think most of us would prefer to have a dignified death than an undignified one, whatever those two options look like.  We in hospice strive to help people to feel dignified as they reach the end of their lives, to help them on their journey to acceptance and see their lives as a triumph instead of their death as a defeat. To have a “good death.”

But that “death with dignity” phrase always makes me cringe a little, too.  In my mind, it’s a lot like the term “successful aging.”  Because let’s face it:  A lot of deaths don’t look very dignified.  And if we are working toward the ideal of “the good, dignified death,” what does it mean if we don’t have one?  Did we screw up somewhere along the line?  Did our loved ones?  Did our hospice team?  Is it somebody’s fault?  And if so, whose fault is it?

Over the next couple of weeks, I’m going to explore the concept of a “good death” a little more.  Rest assured I haven’t written those posts yet, so if you have thoughts about the topic or what you’d like me to write about, please feel free to share them.  I’m also trying to make these posts a little shorter, as they seem kind of long and I’m guessing it’s hard to find the time to read them.  I didn’t manage to make this one as short as I had hoped to.  If you have thoughts about post-length, too, feel free to share.  And, as always, thanks for reading.