Hospice, Death, and the Good Life

In the last few months, we've gotten to know the hospice folks pretty well.  Good people.  Dedicated, intelligent, sensitive people. 

They may represent, in some ways, the best hope for America. 

Consider: 

One of the most divisive debates in recent North American memory was probably the debate about universal health care.  What was conspicuous to me was that the public debate took place without any particular reference to what a good death means.  When in fifty years you can tack thirty years on to human life expectancy, you have to make up your mind who should live for how long, and whether life itself is an absolute value.  

Stands to reason: calculating the food-needs alone should give us pause for thought. 

On the other hand, it's clear that nobody wants to take on the burden of deciding who should die.  When my siblings and I talked to mom's oncologist about what we could expect at the end of her life, my sister naturally enough wept at the thought of withholding hydration and feeding I.V.'s.  But the oncologist said calmly, "I just know what it will feel like to her, and I would ask you to consider it carefully.  I am only telling you what I would want for myself."  And that meant deciding, in effect, that somebody we love will die, or at least that we will not do all we can to prevent it.

Some things are more important than life itself. 

If you follow at all the jeremiads of professional medical ethicists, they truly do get the importance of a vigorous national conversation about good death.   But then, they're professionals, and sometimes see "good death" as a medical issue rather than a social one.   They certainly are not entertaining enough to jolt us out of Dancing With the Stars long enough to discuss death seriously.

"Nice hat. Did you get that at Rolf's?" Medieval imagination of death coming for the King. Death in the Middle Ages was a part of life. Life expectancy at birth was about 30 years (28 years for Jesus, around 70 for most readers of this blog). They planned for it because they witnessed it. For most of us, that's not on today's to-do list.The truth is, a good life and a good death are inextricably intertwined.  The medieval Catholic Church, partly misunderstanding this point and partly humanely offering amnesty to those who had not lived a good life, offered elaborate and persistent ways of making a good death.  But even for the Roman Catholic Church in the brutal Middle Ages, asking people to live "a good life" was a pretty herculean task.  (For best first-looks at death in the Middle Ages, see Caroline Bynum's collection of essays on death and eschatology and especially Eamon Duffy's outstanding look at popular piety in the late English Middle Ages.) 

Socrates and Jesus, understanding this from the point of view of death, refused to deliver themselves from death if it meant tainting a good life.   In a world where death is a visible part of life, the urgent demands of a good life are meaningful: when death does come, it's not enough to personalize grief.  One senses one's own death, assesses the worth of a life to the community, and does not have to imagine one's own importance. 

In America, by contrast, 56% of us will die in hospitals, another 19% in those necessary graveyards of the family, nursing homes.  While we debate endlessly about the economy and jobs, the real sinkhole of our lives approaches quickly, relentlessly, and largely ignored.  This is a problem government can't solve: the solution would be worse than the problem.  The only thing that cures lovelessness and displacement is love and a place.

A place to grow old, to be ill, to die, wanted and not rejected, mourned but not forced to live on and on without purpose or dignity. 

And that's a thing we have to create.

I've been sketching my mother's obituary and eulogy lately: it's best to have these things done in advance, I think.  It's a good bet the funeral will be well-attended, because when you make yourself affectionate in this world of stupid bullshit, you really are going to find yourself missed. 

But both dad and I find ourselves growing up in some ways, two adult men used to the pattern of love and affection that mom set, having to step up and do the things that love does, not just as a duty, but out of affection. 

There's no other way to keep mom alive, really.  Her body will die.  Her spirit, well, who knows.  If there's a heaven it will go there.  If there's a god, mom will fly to him.  But for us left here, we have to become better, absorbing the meaning of her death and folding it into life. 

It's difficult not to think of my blithe, bored, dull students at this point, and how they treat their own lives as passing moments.  They haven't had much affection to tell them they matter, and so they don't much to themselves.  Affection has that magic: it says, "You matter."  That's a good life, to say that to children and others.

But then there's death: it has the power to ask you to stop feeding on the affections of others and to start living for those who require your love.  The disciples of Socrates and Jesus, the partisans of Civil Rights, even the fans of John Lennon should know this by now. 

Unless a grain of wheat falls to the ground and dies, it remains but a single grain.  

Here in America, when it falls to the ground and dies, it does it in sterile tiled rooms, and passes thence unwitnessed to the earth. 

Our hospice volunteers seem to think that it need not be that way, that a grain of wheat that falls to the earth might find a home in the hearts of those who witness death and feel it part of their own lives, not the interruption in their own stories, but one large and rich and full and always growing.

Death humanizes us.  With a one hundred percent mortality rate, nothing is more human than death.  Noticing it makes us better humans.

In that thought lies hope for a better life.

Comments

[Susan]

Memento mori.

Hope you get to be with your mom right at the very end, friend. Wish I had been able to be there with mine, instead of 90 miles away. But my dad and two of my siblings were at her bedside, and the medical people kicked them out of her room just before she died--you know, so she could spend her last moments on earth surrounded by strangers and their frantic (futile) activity. So happy you have a more human thing going on. Blessings.

[CityCricket]

Well said.

When it was clear that my MIL was going to die my FIL sought to bring her home to do so that she could live her remaining days in her home, not a sterile hospital. He (a civil rights lawyer/ professor of law) had to threaten the hospital with a suit of "wrongful imprisonment" before they would allow her to leave. Two weeks later we were winging our way home in a race against time. We arrived at MIL's side less than an hour before she died. The clearest word she said amongst much less-clear things was my dh's name- and it was clear as a bell. I'm so glad we were all able to be by her side. There is no way the hospital would have allowed her husband, four children and their spouses, 15 grand children and about 4 close family friends to all surround her at the same time - softly singing the songs she loved as she died.

I would like such a good death.

[Leonana]

Beautiful post. Even though it's about the sadness of loss, you celebrate the beauty and the hope. My mother died in her sleep, after an evening of playing bingo with her friends. I was able to see her the week before, and visit her in her suite at the retirement center. Although she died alone, I was glad that it was in her own place, and after doing something she enjoyed. I think of her often, and the memories make me happy.