by Laura E. Bender
A specific moment in my life taught me just how easy it can be sometimes to have a conversation about dying and death. Conversations about the end of your life can be scary, sad, or awkward, but these conversations also can be comfortable. A few years ago, on a flight from Denver to Philadelphia, the woman seated to my left side voluntarily told me all about the healthcare treatments and services she wanted at the end of her life. For example, she openly shared when she did and did not want a “do not resuscitate” order and a feeding tube.
This conversation began after the ever-so-common question people often ask of strangers next to each other on a plane: what do you do for work? I assumed my response would kill the sociable dynamic of our conversation if I didn’t choose my words carefully. At the time, I would read detailed patient death notes in medical records written by hospital staff, and I would talk with family members of recently deceased Veterans about the care they received in their last month of life. “I study the experiences of people dying and the choices people face at the end of their life.” Most people quickly respond with a degree of uneasiness, saying how sad my work must be, and then they find a rather awkward way to change the conversation. This woman was refreshingly and notably different. She dove into how important she knows my work is and how she is confident in the choices she has made for herself. I learned she was perfectly healthy and vibrant, and she didn’t work in a health care related field, so I was very curious about this woman’s perspective.
I have yet to have a more relaxed conversation about end-of-life health care decisions than that long chit-chat on the plane. Many people, however, rarely have such a casual conversation, let alone any conversation at all about advance care planning and end-of-life choices. As a palliative care researcher, I confidently can say that people often don’t know that they even have choices. Many of the people I have spoken with assume they will get the care they want, when and where they want it. If a person has a condition so severe that he or she is unable to communicate, doctors, family members, friends, and even sometimes the government are forced to make decisions for you about your health care treatments and services that may or may not be the care you want. Any disagreement may prolong decision-making and possibly increase the chances of you suffering. This confusion and conflict that can arise during difficult times can be eased with preparation.
Educational barriers often result in inadequate end-of-life care conversations. One fantastic way to remove that barrier is by using the many free resources available to you that you may be surprised exist. For example, did you know that April 16 is “National Healthcare Decisions Day”? The resources on their website, “nhdd.org,” are an excellent starting place to educate yourself on how to have conversations about end-of-life decisions that range from very formal and serious to casual and fun. For example, “The Conversation Project” (theconversationproject.org) has a “Starter Kit” that walks you through how to start conversations with your family or doctor. The NHDD website provides links to official legal documents for your state, as well as games, such as “Hello” (commonpractice.com/hello), a conversation game about “living and dying well” that can be played by anyone of all ages. In other words, NHDD reminds us that it is never too early to talk about your health care preferences and you do not have to figure it out on your own.
I long to live in a world where people feel less awkward when talking about end-of-life health care decisions with their loved ones. The women on the plane was a fantastic model for me of one way (of many ways!) to talk about health care decisions. Consider recognizing April 16th as an opportunity to lessen discomfort you may feel about discussing these decisions. Show love for yourself and those you love to live the best life all the way through to the last moments.
Laura E. Bender is a 2nd year PhD student in Health Services Research at the University of Washington.