Barbara Bush and End-of-Life Care

How her decision for comfort care is sparking dialogue around choice at the end of life.

David Hume Kennerly/Getty Images
David Hume Kennerly/Getty Images

The majority of Americans say that they want to die at home, yet about 75% of older adults are dying in nursing homes and hospitals. The majority of money spent on healthcare is spent during the last year, often in the last few months, of life. Why? Because we haven’t figured out a way to discuss death as being as normal and spiritual a process as birth.

Roughly 2 of 3 Americans do not have advance directives in place. An advance directive, also known as a living will, is a document that allows people to express their wishes for end-of-life healthcare should they ever become too sick or injured to speak on their own behalf.

Barbara Bush’s family made public her decision to pursue “comfort care” just as National Healthcare Decisions Week began last week. The decision to make this a public announcement rather than keep it a private family decision has sparked the national dialogue around end-of-life care and decision-making.

Many people are uncomfortable talking about death, fearing that somehow they might hasten their own death if they discuss or plan for it. But the truth is that all of us are going to die. That is a 100% certainty. It’s just that we don’t have an expiration date stamped on the bottoms of our feet when we are born to tell us when that time will be.

Whether we are a young and healthy 28, or an ill and aging 78, life can turn on a dime. Completing an advance directive serves as an opportunity to explore one’s values, beliefs and wishes for end-of-life care, and to have discussions with care providers and loved ones about it. Advance directives can also remove the burden of having to make difficult decisions on a loved one’s behalf, as was my experience with losing my mother.

As an otherwise-healthy 68-year old, my mother took a traumatic fall down her basement stairs onto the concrete floor. She sustained massive head and brain trauma and was left in a coma with little chance for any meaningful recovery. My siblings and I, as the next of kin, were faced with very difficult decisions. However, because my mother had completed her advance directive and made her wishes very clear, it removed the burden from us of having to make those difficult decisions on her behalf.

As traumatic and painful an experience as it was, releasing my mother was a beautiful, peaceful and deeply healing experience, because she had made her wishes known in writing. There was no disagreement among our family, there was no burden of guilt or second-guessing; we were simply honoring her wishes. My mother’s final gift to her children was the gift of having made her wishes known in the form of her advance directive.

Beyond preparing for the inevitable, there is a certain gift in talking about our own mortality. It creates a sense of purpose and urgency in how we are living our lives now. It can give us the opportunity to really consider whether we are living our lives fully TODAY – being present, making memories, sharing our gifts and passions, creating our own legacy – knowing that tomorrow isn’t promised.

Our job is to live a fulfilled and joyful life, so that we can have a peaceful death, whenever that time comes. Completing our advance directives prepares us and our loved ones for the inevitable, gives us the opportunity to take charge of our future, and allows us to be fully present in our lives today and choose to live each day boldly, as though it were our last.

Barbara Bush has been a loyal patriot in service to this country for many, many decades. Perhaps her greatest legacy will be opening the conversation around the value of choice at the end of life and truly creating the life that we desire and deserve.

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