Don’t put off important end-of-life conversations

Don’t put off important end-of-life conversations


Every day, hospice professionals meet with family members who are struggling to make end-of-life decisions in crisis, when emotions are running high and fear of loss drives the decision-making process.

Hospice should offer peace of mind, transitions and decision making without crisis, along with the ability to make informed decisions. All of this can be possible with one simple action: having a conversation.

The Conversation Project was established in 2010 by Pulitzer Prize-winning writer Ellen Goodman along with clergy, media and medical professionals in an effort to create public engagement, with a goal to have every person’s wishes for end-of-life care expressed and respected.

Decision making is much easier when you know what your loved ones would want when they can no longer express it themselves. It changes “Am I making the right choice here?” to “I am following through on what they would want, even if it isn’t exactly what I would want.”

Studies have shown that about 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute-care hospitals, 20% in nursing homes and only 20% at home. A minority of dying patients use hospice care, and even those patients are often referred to hospice only in the last three to four weeks of life.

Recently, a friend’s 88-year-old mother received some very bad news — a diagnosis of stage 4 pancreatic cancer. Chemotherapy and radiation caused numerous hospitalizations for a multitude of side effects.

After a few difficult weeks, the patient and the family decided to take an extended vacation, stopping all treatments for that time — no office visits, no hospitals, quality of life at its greatest potential.

Upon returning from vacation, more complications arose, and the family was struggling with the choice of aggressive treatment versus comfort care.

When hospice experts met with the patient, the first question was, “Do you understand why you are in the hospital?” This patient clearly understood her predicament.

When asked what her wishes were, she said it as clearly as possible: “I want to go home.”

That is exactly what happened. She returned home to live out the rest of her life, on her terms, with supportive comfort care.

We need to start asking questions and having conversations before end of life:

If you are unable to speak for yourself, who would you want to speak for you?

Who would you choose to be “on your team?” (After working in hospice care for a decade, I’m confident that my team would be my husband and my sister. But not my mother or my children, as they would make emotional decisions for themselves, not necessarily what I would choose.)

Talk about the difficult topics, such as life-sustaining ventilator assistance and whether you would want this.

Talk about more simple things. Do you like music in the background? (Personal note: My father loved classical music. I wish I had thought to play his classical music during his final days.)

Pets are family too. Talk about whether you want your pet present. Talk about aggressive treatment; talk about rehospitalization. Talk about comfort care, when and where. Talk about family burdens. Talk about finances.

Don’t wait, because these decisions are too important. Share your wishes for future health care with the people in your life. Share them with your health care agent, other loved ones, friends, roommates — as many people as possible.

There are many resources to help you begin the conversations, such as the Five Wishes booklet; “Have the talk of a lifetime” card packet; online Free Conversation starter kit at the Conversation Project website; and the Hello Game.

Ultimately, the difficult decisions that are inevitable at the end of life will be much easier with earlier preparation and open conversations right now.

RESOURCES: Hello Game - The Conversation Project 

LAURA MARION, R.N., B.S.N., is director of Allied Services Hospice and Palliative Programs.