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Breaking the taboo about advance care planning

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FILE – Janet Kelly, 70, talks with her husband of 43 years, Thomas Kelly, 78, as she pets their dog, Socks, while sitting on a couch in the living room of their North Kingstown, R.I., home. The Kellys signed a power of attorney document giving each other control over their end of life care and the right to decide when enough treatment is enough. (AP Photo/Stephan Savoia)

“And in stories, endings matter.”

This quote by Atul Gawande, M.D., comes from his best-selling book, “Being Mortal,” and one of his central themes focuses on how, as a society, we have made death a “taboo” subject – something we just don’t talk about.

As we observe National Healthcare Decisions Week (April 15-19), let’s all commit to breaking this taboo. Let’s commit to having the conversation about advance care planning.

We have allowed generations to avoid sharing or discussing their end-of-life wishes, even with those closest to them. As a result, many of us experience fear and angst at the prospect of end-of-life conversations that could be reduced by simply taking time to talk about it while we’re healthy.

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Lisa Leas is a health coach with WellSpan Internal Medicine. (Submitted)

At WellSpan Health, we call it “Horizon Planning” because everyone has a health horizon, an end of their life, and we should plan for it. That’s why we recommend patients have the conversation about end-of-life care with their loved ones.

We even offer an easy-to-use planning document, which allows them to tailor individual wishes, at no cost and in as little or as much time as needed. In my role as a WellSpan health coach, I tell patients that their advance care plan is like an accordion – they can make it as big or as little as they want – it’s all up to them.

But it’s more than just a paper document. The beauty of an advance care plan is that it becomes part of your electronic health record and can be accessible by your health care providers anywhere, at any time. We also have it available on our MyWellSpan online patient portal, so patients can download their plan into the app and have it in the palm of their hand.

When someone becomes chronically or terminally ill, they can feel a total loss of control. With a completed living will, some of that control is given back to them. What better tribute can we give someone then honoring their wishes?

A living will is meant to grow and change, just as an individual’s values and preferences can change. The medical field evolves constantly, and it makes sense that this can affect end-of-life wishes, too.

That’s why it’s so important to have the conversation with your loved ones. They need to know your end-of-life wishes.

Recently, a patient completing her planning documents said to me, “My family keeps buying me roses, but I like daisies!”  She put her preference for daisies in her plan. I hope she will get daisies on her next birthday after she has shared a copy of her living will with her children.

An advance care plan is the best gift we can give our loved ones. They may not know the value of this gift until the author of the document is gone.

This gift will provide comfort, ease anxiety and reduce uncertainty when nothing else can during a difficult time. When a loved one is unsure of the patient’s wishes, important decisions are often delayed – and it can be heart-wrenching. An advance care plan – including a living will – provides our loved ones with peace of mind that they did the right thing, at the right time.

Free resources are available at WellSpan.org/HorizonPlanning.

So let’s break the taboo together. Have the conversation with your loved ones today.

It is truly a priceless gift for which they will be eternally grateful.