Initiating end of life discussions
By Terre Mirsch
I hear the story almost every week.
Discussions about end of life values and preferences were delayed. The family attempts to make healthcare decisions in accordance with their loved one’s wishes but they never had a conversation about what those wishes might be, and their loved one is too ill to participate in decision making. Too often, this leaves families in turmoil and conflict, as they struggle to make decisions in the midst of a healthcare crisis- a time that is already filled with heightened emotions.
Ninety percent of Americans state that they prefer to die at home. They share values that include a desire to be free from pain and other symptoms, while receiving supportive care that addresses emotional and spiritual needs. However, only approximately one third of Americans have a living will and fewer have discussed their preferences with family and their health care team. Conversations are often avoided in an effort to spare our loved ones from having these difficult discussions or from acknowledging how fragile and vulnerable we, as human beings, are.
It’s never too early to start to think about these issues and to begin to have regular discussions about you and your loved one’s views. Be sure to not only talk about medical decision-making, but other values and priorities that are important and define quality of life.
The following tips may help you to initiate these important discussions:
- Select an appropriate setting- a quiet, comfortable, private place.
- Ask permission: “I’d like to talk about how you would like to be cared for if you got really sick. Is that okay?” or “If you ever got sick, I would be afraid of not knowing what kind of care you would like. Could we talk about it now? I would feel better if we did.”
- Initiate the conversation by sharing recent events, or an article, magazine, television show, or movie about the topic. Hardly a week goes by without an important news event or newspaper article related to end of life care. Episodes of weekly TV series’ such as Grey’s Anatomy often tackle difficult end of life issues while bestselling books including The Last Lecture (2008) and Tuesdays with Morrie (1997) express values and priorities important to those facing serious illness. Even the Academy Award-winning film The Descendants provides opportunity to discuss the value of a living will when making difficult decisions about removing life support following serious injury.
- Other tools may also help to facilitate discussions about important values and priorities. Go Wish cards, a set of 36 cards with short statements of things people often cite as being important to them, promote discussions regarding values and wishes and enable the user to rank and prioritize what is important to them while stimulating conversation.
There is no better time than the present to begin these discussions. Doing so alleviates stress, anxiety, and uncertainty while providing opportunity to focus on the values and priorities that define quality of life for the significant people in our lives.