Imagine yourself at a graduation party, backyard barbeque, or other social event at which you are first introduced to someone. An introductory conversation often contains the question, “What do you do for a living?” How would you respond if the individual answered that they worked for a funeral home? Perhaps awkward laughter or a quick change of subject would follow. In America, one topic of conversation that is taboo in social circles as well as within most families is the end of life. Although violent deaths are an acceptable norm in today’s movies and video games, we become uncomfortable and tend to shy away from thinking about or discussing death (no matter what the cause) when it pertains to ourselves or people we know. We shield our children from it, use indirect language such as “pass away,” and sometimes spend hundreds of thousands of dollars on medical care trying to avoid it.
Some may be thinking that this article is leading to a discussion about rationing health care. Certainly medical care is essential to the conversation. Advances in medicine have created end-of-life situations that didn’t exist 20 or 30 years ago. Historically, the dying process was much quicker, and choices for treatment when one was facing a critical or chronic illness were more limited. The growth in knowledge about disease processes and the development of technology to treat previously untreatable conditions has made the dying process more complicated, which is precisely why conversations about end-of-life are important. I believe we would all agree that maintaining personal dignity and respecting autonomy are commonly held values in our culture. At the end of life, these values are difficult for loved ones and health care professionals to uphold if discussions about personal goals and health care preferences have never taken place.
I recently watched a film about end-of-life discussions called Consider the Conversation: A Documentary on a Taboo Subject. The individuals and professionals in the film made some thoughtful observations about why we are reluctant to discuss the subject of death and dying.
- If we talk about death, we may jinx ourselves and it will happen sooner. Although this statement sounds like pure superstition, this belief may be more common than we realize.
- Discussions about death make people feel vulnerable. Death is surrounded by many unknowns. When and how will it happen? How will I feel? Will I know that it is coming? How will my loved ones react? We are uncomfortable considering the possibilities of suffering, being a burden to others, and having an undignified end.
- Conversation about death is intimate. People must consider their personal identity, including values, relationships, and goals; determine what is meaningful to them; and communicate these beliefs to others.
- There is a presumption that more care is better. If the final outcome is likely to be the same, would you rather spend your final months and days in a physician’s office or hospital receiving tests and procedures, or with family and friends doing activities that you enjoy?
- To discuss death means to give up hope. To look death in the eye, accept that it is going to happen, and plan for it is not giving up but rather changing the focus of hope from prolonging life to maximizing the quality of life.
This documentary was filmed by two men from Wisconsin, one a teacher and the other a hospice worker, who witnessed a need for discussion about end-of-life issues after both lost immediate family members. One of their goals is “to change the current American attitude from one that predominantly views end-of-life as a failed medical event to one that sees it as a normal process rich in opportunity for human development.” Visit www.considertheconversation.org for additional information. Another website which offers tools, guidance, and resources to encourage discussion about end-of-life issues is www.theconversationproject.org.
So how does one begin a conversation about planning for the dying process? Perhaps the easiest way is to watch, listen to, or read the news. Take a current event involving death and imagine yourself or your family in that situation. Share your thoughts with your loved ones, and ask them for their opinions. Your thoughts and feelings about some situations may be crystal clear, while others may be uncertain. When uncertainty exists, discussion with others can help you define, or understand how others define “quality of life.” In the film, Martin Welch, a physician who developed Lou Gehrig’s disease, encourages viewers to think about 100 things that they do every day. If these things were to be gradually or suddenly taken away, which ones would have to remain for you to feel that some quality of life exists? What is the physical and emotional cost of maintaining these things? Both of these questions involve very personal decisions. Another option for beginning end-of-life conversations in a non-threatening manner is a card game called My Gift of Grace (www.mygiftofgrace.com).
When we remove the taboo that is associated with death, we can promote self-direction and dignity to our very last breath.
Karen Kaslow, RN