Famed Clinicians: Prepared but Not Ready for Death

In Memoriam page at the National Institute on Aging

In Memoriam page at the National Institute on Aging – Click to enlarge.

When we think about dying, about the end of our lives, we may look to the experts for guidance — to those people who have long experience with various aspects of aging and the medical issues that complicate the process of dying. We assume that these people have their own end of life details all worked out.

This week a New York Times article by Alexandra Butler, a poet, helped us gaze into the experience of the well-prepared.

Robert N. Butler, M.D., the founding director of the National Institute on Aging, and his wife, Myrna Lewis, a social worker who specialized in support for older women, had all of the details worked out, and they shared all of this information with their daughter. Their preparations, so well conceived and worked out, assumed that Dr. Butler would pass away before his wife, but this did not happen. Just like anyone else, these two experts were confused at the unexpected turn of events. Moreover, when his wife was diagnosed with terminal brain cancer, it became clear that while they prepared and saw to the arrangements for the end-of-life, being prepared for death is a lot different than being ready to die.

In her article, Alexandra Butler writes that despite the uncertainty and challenge of watching her parents die, she was very glad that they had made the preparations for palliative care with no extraordinary interventions.

No one wants to die. Some people handle this by avoiding the topic — and the preparations. Others handle it by speaking incessantly about the expectation of dying. Still others, work hard to ensure that each minute detail is in place, so that family members spend time saying good-bye. Dr. Butler, who is also the individual who coined the term ageism, was prepared, but as his daughter points out, he was not ready.

When Dr. Butler died in 2010, I wrote this post for AsOurParentsAge.

Best Quotes

  • Our deaths are the last message we leave for those we love.
  • In a world where so many of our fellow human  beings live with threats of terror and destruction, if you are lucky enough to imaging you might have any measure of control over how you die, that is a privilege that would not go to waste.

Alexander Butler’s perspective offers support and encouragement to those of us — adult children and aging parents — as we navigate the the final years of aging.

Oliver Sacks’ Perspective on the End of His Life

musicophilia-1-194x300The direction of every life can change in a moment. We learn this as we age and also as we support elder parents.

In his February 19, 2015, New York Times’ opinion piece, My Own Life, Dr. Oliver Sacks illustrates how fast things can change. If you missed his article, it’s a stirring description of what it’s like to feel good and robust at one moment and discover a metastasized cancer tumor at the next. There is nothing unique about this situation — it happens all the time. What is unusual is that a person takes the time to write about it and the ending of life with intimacy and clarity.

Dr. Sacks, a neurologist who has written many books about our brains and how they work — my personal  favorite is Musicicophilia — is in his eighties and a professor at New York University’s School of Medicine. The movie Awakenings, with Robin Williams portraying Dr. Sacks, was based on his book of the same name.  Continue reading

End of Life Choices

butler155-blogSmallInlineIn June 2010 I read a chilling New York Times Magazine article, What Broke My Father’s Heart, by Katy Butler, who described how her father’s heart outlived his brain because a pacemaker kept chugging along. It kept going despite that the rest of his body, due to dementia, was giving up and shutting down. Butler explained how her mother tried to get the pacemaker removed but physicians turned down her request again and again. Also included in the article were descriptions of her mother’s extreme health consequences after years in a caregiving role.

I posted the article under the “must read” section of this blog, where it remains, still timely after several years, and I’ve read it again and again. The reason that I keep re-reading it is that it feels like we all wish for a death without prolonged suffering, ICUs, and electronic shocks to our chests, but most of us do not get what we want.

Continue reading

Why is Hospice Still A Tough Call–Even for People Who Know?

Check out this fact sheet

Check out this hospice fact sheet.

When a person is approaching the end of life, we can find no easy answers, no solution that fits every person’s or family’s situation, even when they know a lot about the options available to them.

To illustrate this you will want to read For Hospice Pioneer, Still a Tough Call, by Paula Span at the New York Times New Old Age Blog. She describes the end-of-life period for Paul Brenner, age 73, who spend years organizing and leading hospice organizations around the country. Despite all of this experience, it was still challenging for Mr. Brenner and for his family to engage with hospice.

Over and over I hear from friends and acquaintances how a loved one uses hospice for the last several days or perhaps a week at the end of life, and I am sometimes puzzled about how difficult it seems to be to decide to use hospice. My observation is juxtaposed with my family’s experience — a bit more than three months when my mother-in-law participated in a hospice program that made us all more comfortable and less stressed during those final months of her life.

Best Quote           Continue reading

Longer Old Age but Lower Quality Near the End?

A few days ago I added a must read link to Michael Wolff’s New York Magazine article, A Life Worth Ending. It’s an eye-opening piece, detailing long drawn-out decline of his mother. Check it out — it really is a must read.

For our parents there are no easy end-of-life answers. Those of us with older moms and dads still living active and full lives are lucky, but one only has to sit in a Starbucks or linger near the water cooler at work to hear frightening and very sad stories. No one wants to die the long drawn-out way as a helpless invalid,

The single conclusion that I reach is less about my parents lives — we can’t turn the clock back — than it is about my own. At some time in my life, if I reach an advanced age, I need to make some clear and thoughtful decisions about how much medical care I will use … or not use.

Two Quotes from Wolff’s Article  to Make You Want to Read More                          Continue reading

Our Chance of Dying in Intensive Care – Peter Saul TED Talk

Australian intensive care physician, Peter Saul, recently presented a TED Talk about the increased chance of dying in intensive care in the 21st Century. He explains that one ten people will die in intensive care, but in the United States it is one in five and in Miami, three out of five.

People who are dying are often attached to intensive care machinery to prolong life, when there is no cure for their medical conditions. According to Dr. Saul, the stress level on the patient and on families when a person dies in intensive care is seven times greater than when a person dies just about anywhere else.

Best Quote: “Increasing longevity means more old age, not more youth.”

A quick, 10 second, way too loud advertisement begins the TED video.