In 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.
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.
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.
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.
At what point, as we age, do we become accepting of aches and pains –aging that is — and stop thinking about rushing to a physician all of the time? How do we decide whether or not to fix a problem if it has more to do with the later years of our life than with a traditional medical ailment? Can we depend on our physicians to clearly tell us when a medical problem is as easily addressed by physical therapy as by a surgical procedure of some type — especially when there are low-tech ways to improve the situation.
These are questions for our elder parents to consider; however, those of us who are older adult children also need to think about them. The medicalization of our aging — the tendency of the medical community to always to have a procedure or surgery that purports to solve a problem — potentially exposes seniors to more and more risks without really solving the problems.
To think about future medical problems in the abstract is easy but so much more difficult when they actually occur and become more personal. Aren’t we really turning our later years into big medical procedure-filled adventures rather than accepting that predictable problems will develop as we age — problems that reflect more about the way about our bodies slowing down and less about true medical issues?
In case you missed this news on December 7, 2011, you may want to learn more about the new Virginia health care directive registry. It’s a free service. This article, Virginia Announces Free Online Health Care Registry, appeared on Richmond’s NBC News 12 site and explains more.
The Virginia Department of Health, working in a public-private partnership with Microsoft and UNIVAL (a health information technology company), now provide the registry as a communication tool to help people save and archive their end-of-life wishes and ensure that these wishes are honored by family members and/or caregivers. Personal preferences are saved in an easy-to-access web location so that loved ones can honor a person’s last wishes when necessary. Registered users will receive an identification care and pin number which can be given to family members.
Individuals can put the following information into the registry.