Priorities Beyond Merely Being Safe and Living Longer

November 18, 2014

“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.

 

 

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6 Responses to “Priorities Beyond Merely Being Safe and Living Longer”

  1. Janet McIntosh Says:

    Thank you for addressing this in your blog of the often daily and ordinary, but sometimes not! This book will be my gift to family adults this Christmas, and the conversation must follow!

  2. shoreacres Says:

    Like you, I’ve often regretted that I didn’t do better in Mom’s last year of life. On the other hand, she had her own ways: passive, recalcitrant, far more fearful than circumstances warranted (at least from an outsider’s perspective).

    So often, it seems there are no good options at the end. Mom’s personal hygiene began to go downhill, but she wouldn’t allow me to help, and wouldn’t allow anyone else in the house. Finally, we came to an understanding that some sort of assisted living was the only answer, but life intervened, and that move never was made.

    We were lucky. From the beginning of her final illness until her death was only five weeks, and she was more than ready to go. Still, I learned so much, and could cope much better today. Unfortunately, I don’t have any more relatives to practice on! I guess I’ll have to tend to myself.

    I’m really glad to know about this book. I wish I’d had it then.

    • Rosemary Says:

      I do hope that our experiences with our elders will change us in ways that help our old age. I hope we remember to accept help, adjust to physical and mental losses, and be willing to let go enough to change a bit.


  3. I can appreciate the difficulties of these decisions. This past year I had several discussions with my parents in their late 80s. They luckily agreed to move to an assisted living apartment, and sell their farm. It is a great relief to the family, to know that they have the help they need now, and they do not have to struggle with the day-to-day chores that were getting difficult. I think your advice is very good.

  4. Diana Studer Says:

    my mother was cared for by my middle sister, and spent just a few sad days in frail care.
    I regret that years back, my father went thru an operation which didn’t help, put him thru pain and discomfort with no benefit. But – that was his particular decision, hoping it would help.

    Now it is the turn of MY generation to make hard informed decisions about our future.


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