Some have said that Americans are the only people on the planet who believe that death is optional. We are a youth-loving, death-defying people. But most of us really know better.
In 2014, the Institute of Medicine (IOM) released its report, Dying in America. As the IOM website states, “no care decisions are more profound than those made near the end of life,” and we have a “responsibility to ensure that end-of-life care is compassionate, affordable, sustainable, and of the best quality possible.” As 2,200 people in our region turn 65 each month (10,000 per day nationally), this IOM report is both important and timely. Diverse as we are, all of us will share the experience of dying. In our society, we try to push this fact of life away, and we would rather talk about almost anything else. Guidance and encouragement from the prestigious Institute of Medicine about end of life gives us another good reason to talk about it.
Our mother lived through the experience of our grandmother dying from complications of dementia and cardiovascular disease. When she received her Alzheimer’s diagnosis, she sat down with us and we “had the talk.” She knew the course of this disease and the decisions we would face as it progressed: increasing needs for assistance with daily activities, appropriate precautions to keep her safe, treatment options that she wanted to avoid including feeding tubes and ventilators that she knew from experience would not be helpful. She was very clear about what she did want and what she did not want. BOTH are equally important.
Over the next eight years, we were guided by her clear and early direction. Even as she lost the ability to speak in the last two years of her life, we were informed and reassured by her great wisdom and foresight. It was heartbreaking to lose her, especially in this cruel way, but she had given us a precious gift — complete confidence that we were doing what she would want us to do for her.
From personal experience, both in our respective professional roles at the Center for Practical Bioethics and in Nursing, as well as our role as daughters, we strongly urge everyone to engage in “having the conversation” ahead of any health crisis. It may be the most important conversation you and your family will ever have. Each one of us needs to name someone to speak for us when we cannot speak for ourselves.
Data show that 85 percent of us will be without the ability to make our own decisions for any number of reasons in the period of time just prior to death. The Center for Practical Bioethics has developed several tools available on the website www.PracticalBioethics.org as well as a program called Caring Conversations® in the Workplace to provide a process to help with this often difficult “talk.” Anyone can download the Caring Conversations® workbook at no cost from the website. Employees from the companies and organizations who currently participate have the chance, with the help of a Center staff member, to understand the profound benefit that initiating this “talk” can have on families. The workbook and workshops also provide useful tips about how to get your family to engage around this difficult topic.
What’s at stake?
That candid, honest conversation can literally be the difference between two alternative futures for your family.
Here is a very common outcome: “Our family was torn apart by mom’s death. We disagreed on what she would have wanted, and now we never celebrate holidays or life events together.”
With a little courage, you can be the reason it changes to this:
“Mom’s death brought us even closer together as a family because she made sure we all knew her wishes AND she would be proud of how we came together to honor her.”
At the Center for Practical Bioethics, it’s called “the greatest peace of mind possible.”
Have the conversation! It will be EMPOWERING and LIBERATING for you and your family.
–Linda Doolin Ward and Sandra Doolin Mellinger
Photos provided by by Linda Doolin Ward and Sandra Doolin Mellinger