“We never talked about it” is one of the most painful and challenging phrases anyone may ever have to say.

As a physician who cares for those approaching the end-of-life, this commonly uttered regret saddens me.

Recently, Marie, a 94-year-old woman with advanced dementia, moved to a long-term care facility in Central Maine and became very ill shortly after her arrival.

She did not have a written advance directive, and we had not yet met with her family to discuss their understanding of her preferences concerning life-prolonging interventions.

Her family’s hearts were heavy with grief at her decline and their minds were blurry from the exhaustion of journeying with her through yet another health-care crisis. When we asked about her wishes, they shook their heads and said, “We never talked about it.”

They didn’t know what she would want. They struggled to remember anything Marie had said, before she lost her ability to communicate, that would shed light on her wishes, so they could tell us if she would want to be transferred to the hospital, or, if indicated, to the intensive care unit where she might be put on a ventilator.

They pondered whether, given her values, she would instead prefer “comfort-focused care” that would relieve her symptoms and allow her to remain in her new home, but might not prolong her life. They regretted that they had never discussed what now seemed so important.

Today is National Healthcare Decisions Day, and it offers us a reminder to have essential conversations with our loved ones and our health-care providers so they will know our wishes and be able to honor them when the day comes when each of us inevitably faces life’s final chapter.

Most of us carry with us the story of the death of someone we loved and the memory of the difficult decisions that arose in the midst of a crisis when grief and loss made calm reflection about goals of care even more challenging than those same decisions would already be in a less-urgent moment.

Unfortunately, as we approach the end-of-life, we often lose our ability to communicate our wishes to those caring for us. It is essential that if we want to guide these deeply personal decisions and ensure that the care we receive is based on our own individual values, we must have meaningful conversations in advance, while we are able, and document our decisions so our wishes can be respected.

“How people die remains in the memories of those who live on,” said Dame Cicely Saunders, the founder of the modern hospice movement.

We owe it to ourselves and to our families to make sure that those who will be involved in our care at the end of our lives know what medical interventions we would want.

Advance-care planning gives all adults the potential to reflect upon, communicate and document our future health-care wishes. Advance directives are the documents that allow each of us to specify the types of medical interventions that we do and do not want and to name an “agent” who understands our goals and values and speaks on our behalf if we lose that ability.

Having a reflective conversation your agent about your goals of care and then documenting your wishes in a written advance directive allows you to choose from options that range from full aggressive medical interventions that attempt to prolong life to focusing on comfort and relief of suffering.

Some questions to consider include:

* What would help bring joy and meaning into your life if you faced a terminal illness?

* What quality of life would you find acceptable or unacceptable?

* Under what circumstances would you want the goals of your care to shift from prolonging life to focusing on comfort?

* If you faced a terminal illness and treatment does not go as we hope, what is most important to you?

* In what setting (where) would you like to die?

This year on National HealthCare Decisions Day, or whatever day you choose, take the time to learn about advance directives, reflect upon your goals of care, talk with those who need to understand what you would want and document your wishes in a written advance directive. To learn more, visit www.nationalhealthcaredecisionsday.org

 

Elizabeth Balsam Hart, M.D., is medical director of the “Cultivating Meaningful Conversations to Guide Care” project of the Maine Hospice Council and Center for End-of-Life Care.

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