Have you ever needed to have a difficult conversation with someone about something very important but avoided it because of the delicate nature of the subject? An example is talking to our loved ones about our feelings and wishes for end-of-life choices. Many people believe the topic of end-of-life planning is just for the elderly, but during a serious pandemic it’s more important than ever for everyone to be prepared for end-of-life decision making.
A valuable resource
As nurses we can provide the tools and advocacy for our patients to make the best end-of-life decisions for themselves as they wish. It’s extremely challenging for patients and families to have to make these types of anguishing decisions while in the ICU. People need to take time before they reach the point of near death for their end-of-life choices to be known to others.
But it can be uncomfortable and even scary to talk about end of life, especially when we are young and healthy. An initiative to help people do just that was started by the Institute for Healthcare Improvement in 2012. The Conversation Project is an excellent program that nurses can share with their patients and their families and use themselves.
Unfortunately, not many people have spoken with their loved ones about the care they want through the end of life. According to a 2018 survey by The Conversation Project, “92% of Americans say it’s important to discuss their wishes for end-of-life care, but only 32% have had such a conversation. 95% of Americans say they would be willing to talk about their wishes, and 53% even say they’d be relieved to discuss it.”
As a nurse, I have seen situations where dying patients are brought into the hospital and have not had those important conversations with their families. This often results in family arguments about what to do and creates stress for healthcare providers, who may feel forced to provide more treatment than appropriate.
The Conversation Project website can help avoid these situations. Its free resources include “Your Conversation Starter Guide,” which outlines a step-by-step process for speaking with a loved one about end-of-life care needs. The guide recommends starting the talk at the dinner table with the people you love. You can share The Conversation Project resources in any healthcare setting.
Starting the conversation
How can people start the conversation? At The Conversation Project website, I was pleased to see a variety of videos that showcase real-life examples of families having the conversation with each other. For instance, in one video, after first reviewing “Your Conversation Starter Guide,” a daughter named Maureen, her father and husband, and her father’s grandchildren of all ages sit at a kitchen table. Maureen lets her dad know that they will be talking about the consideration of a good end to a good life. Maureen asks her dad, “If you were in a condition where you couldn’t make decisions for yourself how extreme would you want us to take measures to save your life versus letting you go?” He answers, “Well I wouldn’t probably want anything. I have led a great life. I’m pretty lucky and it’s because of you guys.” He is visibly emotional and choking up. Amazingly, everyone in the room starts to open up and weigh in on what they would want at end of life.
Another video demonstrates a humorous take on the importance of choosing a proxy who would act with the person’s wishes in mind. A healthcare proxy is sometimes called a healthcare agent, power of attorney for healthcare, or surrogate decision maker. The legal document that allows a proxy to speak for some else may be called a healthcare proxy form or an advance directive. The advance directive documents include both a healthcare proxy form and a living will where specific medical treatments a person would or would not want can be listed. The Conversation Project website offers free downloadable guides for choosing a proxy.
Having a conversation with a loved one about choices for end of life, especially with a parent, spouse, or child, is not easy. The Conversation Project helps to make the process less painful and more comforting for everyone involved. Nurses can advocate for their patients by providing this great tool for self-empowerment and supply resources for informed end-of-life decision making.
Mary Gemma O’Donnell is an assistant clinical professor at the Northern Arizona University School of Nursing in Flagstaff, Arizona.
Augusta Health. What are advance directives and why are they important? November 29, 2017. augustahealth.com/health-focused/what-are-advance-directives-and-why-are-they-important