“People with serious illness have priorities besides simply prolonging their lives.”
— Atul Gawande, Being Mortal:  Medicine and What Matters in the End

November morning, Green Lake

November morning, Green Lake

I am adding my voice to the acclaim surrounding Dr. Atul Gawande’s Being Mortal, his newest book about the failures of medical professionals and our culture to treat the terminally sick and aged in their final months and days.  It has been about one year since my father’s involuntary move to a nursing  home following a treatable medical crisis.  And while he recovered from the emergency that brought him to the hospital and then the nursing home for rehabilitation, his other mental and physical frailties — at age 94 — prevented him from returning home to live out his last days  on the farm he loved.

So Gawande’s writing resonated deeply with me.  Our family suffered from the agonizing decisions that were made without the consensus of all nine siblings (an impossible task given the time frames we were working with and how seemingly irreconcilable our differences of opinion were). Some of the rifts are still not healed.   And while the enormous commitments from a couple of siblings kept Dad living alone in his home for many years, in the end, it felt something like a failure that he did not die at home as he wished.

We were not alone in the challenges we faced in Dad’s  last year.  We no doubt could have done better.  None of us were especially good at holding the hard conversations with Dad about the realities of his limitations.  From my perspective, it seemed that he was unwilling to make decisions and face facts.  We struggled with the idea of allowing poor choices if that is what he wanted.

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Gawande says, “At least two kinds of courage are required in aging and sickness.  The first is the courage to confront the reality of mortality — the courage to seek out the truth of what is to be feared and what is to be hoped.  Such courage is difficult enough.  We have many reasons to shrink from it.  But even more daunting is the second kind of courage — the courage to act on the truth we find.  The problem is that the wise course is so frequently unclear.  For a long while, I thought this was simply because of uncertainty.  When it is hard to know what will happen, it is hard to know what to do.  But the challenge, I’ve come to see, it more fundamental than that.  One has to decide whether one’s fears or one’s hopes are what should matter most.”

I think we all can agree that merely providing safety and prolonging life are not the priorities that matter most in life.  Other concerns, such as avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden to others, and having autonomy, are perhaps more important.  And the only way to understand what matters most is to have conversations, to ask.  Gawande provides some helpful ways to frame these conversations.  He says to ask, “If time becomes short, what is most important to you?”  And here are some other questions to raise:

  • What do you understand your prognosis to be?
  • What are your concerns about what lies ahead?
  • What kinds of trade-offs are you willing to make?
  • How do you want to spend your time if your health worsens?
  • Who do you want to make decisions if you can’t?

What matters changes with our knowledge of life’s fragility and finitude.  With shorter horizons, our priorities narrow and our desires change.  How can one honor a desire to live independently and autonomously when limitations and debilities become more pronounced?  Gawandwe says, “This is what it means to have autonomy  — you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.”  We want to continue to shape our lives in ways that are consistent with our characters and values.

I am still not clear about how to respect the wishes of an increasingly frail person if they refuse to change at all.  Dad, for example, may  have wanted to die at home, but he absolutely refused to accept outside help.  He needed 24-hour care, but would not consider visiting nurses or a paid companion.

It seems to me that at some point, one does have to let go and accept the losses that old ages brings.  It would be wonderful  if this could be navigated gracefully.  Alas, we fall short. But the end of life can be transformative and meaningful.  Gawande’s book is an important conversation about these possibilities.