BIDDEFORD — What would you want?

Imagine someone having to make life-and-death decisions for you when you can’t.

Imagine having to make these same difficult decisions for a loved one when you do not know his or her wishes.

These situations happen daily. There is an answer to help ease and guide these scenarios and give patients the right to direct their life choices. It is a tool called an advance directive or “living will.”

An advance directive is a way to ensure you get the care you want – no more, no less; tell others your wishes if you’ve lost the ability to communicate; and allow others to act on your behalf.

There are hard questions to be addressed with no right answers. Some people want every treatment. Others don’t – they just want to remain comfortable while nature takes its course.

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Without those documents, such decisions are often left to family members who have to make painful guesses about “what Mom would want.” These choices are often gut-wrenching and contentious.

As a nurse and a patient advocate, I’ve seen difficult conversations taking place at an unconscious patient’s bedside. It is emotional for everyone, including the caregivers.

One of my most memorable cases was an elderly, spry woman who got sick very quickly. After a long period of “doing everything” we could, the daughters were still at odds, arguing about what to do next. Their mother did not have an advance directive, so they couldn’t know for sure what her wishes were.

We finally arranged a meeting between the family and a hospital team including all specialists, caregivers, an ethicist and the patient advocate (me). The family spoke emotionally about their dilemma with the choices for their mom. The health care team answered questions and explained their mom’s physical and physiological state.

In the end, the daughters made an educated and supportive decision to place their mother on end-of-life palliative care measures. The daughters were able to have a supported end-of-life experience with their mother, and the mother had a respectful and peaceful passing.

I got a letter from the family a month later thanking all of us for making such efforts to treat everyone with respect and help them make difficult choices for their mother. They felt they finally made the right decisions.

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But much of this turmoil would have been avoided if the patient had an advance directive with her wishes clearly spelled out.

Thursday is National Healthcare Decisions Day, which is devoted to educating the public about the purpose of advance directives and the availability of resources to execute them. Nationally, among Americans over 60, only 72 percent have such documents, according to one study. Others put the number of adults of all ages with end-of-life documents at only around 30 percent.

There are five steps in creating a health care directive:

Talk with your doctor.

Name a health care agent.

Decide your health care choices.

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Write down your choices.

Share your choices.

The conversations with your family and caregivers about your wishes are at least as important as the documents themselves. If no one knows you have an advance directive, no one knows to look at it.

Maine’s advance directive form is available on the Maine Hospital Association website at tinyurl.com/moqrxjc. The group also has a fact sheet available, at tinyurl.com/mhentw5.

Please visit www.nationalhealthcaredecisionsday.org for a variety of free information and tools to assist with thoughtful reflection on health care choices and ideas on how to get involved. Gundersen Health System in LaCrosse, Wisconsin, also has a lot of resources to help with these discussions and decisions at www.gundersen health.org/advance-care.

I can’t emphasize enough how important it is that in addition to filling out the forms, you also talk to your health care provider and your family about your choices. These are hard conversations, but – I promise – not as hard as the conversations that happen when families don’t know the patient’s wishes.


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