It’s never easy to have this important conversation with a loved one

A frequent role for a chaplain in an intensive care unit is talking with families struggling with difficult decisions involving the care of their loved ones, especially near the end of life. I remember one large family I was asked to see — a number of siblings who had been told their mother would not recover from her illness, and doctors were recommending the withdrawal of life support.

When I entered the intensive care unit waiting room, I could see that everyone had been crying. Crumbled white Kleenexes littered the floor like freshly fallen snow. I distinctly recall one of the patient’s sons saying: “As a family, unfortunately, we have always avoided difficult conversations. Now we don’t know what our mom would want us to do in this situation.”

“Mom always took such good care of us, now it’s our turn to take good care of her, but I don’t know whether that means taking her off life support or leaving her on,” said one of the other sons.

“How I wish I had asked her what she would want in this situation, but the time never seemed right, and now it’s too late,” continued one of her daughters.

As I sat with the family struggling with their difficult decisions, another daughter came in. “I just got off the phone with auntie, and she says she and Mom talked about this last year. She says Mom said she would never want to be on life support.”

“Then we don’t actually have to make a decision, we just have to tell the doctor what Mom wanted. We don’t have to like it or agree with it. It’s what she wants,” said the other daughter.

“The best way we can take care of her is to do what she wants,” the son said. “Chaplain, can you tell the doctor we need to talk with her again?”

“The truth is, there rarely seems to be a ‘perfect time’ to talk about Advance Care Planning,” says Dr. Julie Goldstein, physician and ethicist at Advocate Illinois Masonic Medical Center and for Advocate Aurora Health, and a nationally recognized thought leader in Advance Care Planning and Clinical Ethics.

“Different topics are appropriate for people at different stages in their health care lives,” Goldstein says. “But we should all consider what we might want to happen if we got into a moment of medical crisis and couldn’t speak for ourselves. Who would I trust to represent my wishes to the medical team if I couldn’t? What would my goals be if I became critically ill with little hope of recovery? Or even with a decent hope of recovery?”

“Everyone’s answers will be different,” she says. “And each of us may change our answers over time and with changes in our health and social situations. It is so important to have careful conversations before a crisis about things like our life values, your health care, the kind of care you would want and the kind of care you wouldn’t want when we are at the end of life.”

“I really believe that everyone over 18 years old should at least have a power of attorney for health care where you can designate someone you trust to make decisions on your behalf, if you ever couldn’t make decisions for yourself,” Dr. Goldstein says.

If you are looking for an excuse or a sign to have one these tough conversations, April 16, is National Healthcare Decisions Day. This day is dedicated to encouraging people to talk with their loved ones about the kind of care they want at the end of their life. National Healthcare Decisions Day is always the day after Tax Day, from the adage, “The only things that are certain are death and taxes.”

Many healthcare organizations, such as Advocate Aurora Health, are using the day to encourage employees and physicians to learn how to have better conversations with their patients about Advance Care Planning by having an Advance Care Planning conversation themselves. Evidence shows that doctors who have had their own Advance Care Planning conversation are more adept and comfortable having the conversations with their patients.

Need to have a difficult conversation?

To learn more about National Healthcare Decisions Day and to find information about completing an Advance Directive, click here.

Reverend Kevin Massey is the System Vice President of Mission and Spiritual Care for Advocate Aurora Health. He has more than 20 years of health care chaplaincy experience. Kevin is a frequent writer and speaker on topics in spiritual care and chaplaincy training.