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Do end-of-life decisions change once you've seen a loved one die?

Dr. Martha Twaddle talks to a patient and strokes her hair during a visit at the Midwest Palliative and Hospice CareCenter in Skokie, Ill., in 2012.

Antonia Perez/MCT /Landov

Dr. Martha Twaddle talks to a patient and strokes her hair during a visit at the Midwest Palliative and Hospice CareCenter in Skokie, Ill., in 2012.

The holidays are a wonderful time to come together with family and catch up, but it's also a time you can tackle a difficult question with older family members: What do you want to happen at the end of your life?

If a loved one were terminally ill or injured, do you prioritize doing whatever you can to save their life or let them pass as gracefully and painlessly as possible? Maybe you have ideas of what you would do, but how do those "what if" decisions hold up when pressed against reality?

If you have your own experience to share about your end-of-life decision, tell us on our Public Insight Network.

That's a question Margaret Pabst Battin faced. She's a professor of philosophy at the University of Utah, but also a renowned expert on the ethics of end-of-life decisions. Her own beliefs about those decisions began to evolve when, in 2008, a bike accident left her husband Brooke quadriplegic.

"His physician said, '100 percent of my patients say they want to die,' and that's typically not long after the accident when they discover life won't be the same," Margaret said.

That was the philosophy Brooke had beforehand, as well. His own medical directives stated he did not want procedures that would prolong the dying process if he were in a terminal or vegetative state. But doctors did not know that until well after he'd been treated by emergency staff and after Margaret arrived at the hospital.

It was in the aftermath, however, that Brooke flourished.

"His friendships became more intense, much deeper," said Battin, "His relationship with me deepened in ways that it would be almost impossible to describe the joy of."

Brooke lived on for several more years like this, but with a gradually failing health that would test Margaret's own sense of what was the right decision.

There would be times that Brooke would proclaim that he wanted to be taken off ventilators and life-sustaining equipment, but were those clear, decisive thoughts, or anguished cries from pain that are only temporary?

"If I ever thought he ever were having a moment of bizarre craziness or huge depression, then you would step back," said Battin, "But not when you see a decision developing over time."

In July 2013, Brooke made the final choice to pass away. It was a hard choice for Margaret to accept, as well, because the experience transformed her own views on end-of-life care.

"There was one point in which I said to myself, 'I wonder if I should tear up everything that I've ever written on this topic," Margaret said, "But that's because when you are so much closer to reality, it is so much more full of small detail that makes a different."

How to make the decisions for yourself

While the holidays are a great time to talk about these issues out in the open, the most important thing is to talk about it early, as well as often, says Emily Lauren Burg, end-of-life care manager in Southern California for Compassion and Choices.

"We never know what might happen at any moment," said Burg.

The first step is to initiate a conversation with loved ones to identify who you can trust with enacting your decisions. Then, it's important to document and detail your choices.

"An advanced directive is something that can be easily accessed," said Burg, "And the first place that it should kept is on your refrigerator so it is readily accessible to anybody that might come into your home."

In addition, she suggests updating your directive every decade or after major life events in order to reassess your own values. And remember that every situation may be different, and that your directive is how you start the conversation.

More tips from Compassion and Choices are available here.

If you have your own experience to share about your end-of-life decision, tell us on our Public Insight Network.


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