While we might hope for a quick death at home, a majority of us will die from a chronic condition like heart disease, cancer, or respiratory disease, and nearly 80 percent will die in an institutional setting, following an explicit decision to suspend life-sustaining treatment.
Advance directives or living wills are made to ensure their preferences guide decisions should the person be unable to communicate them.
Studies have shown that discussions between family members can greatly improve end-of-life planning and decision-making. Patients who have discussed end-of-life care with their families generally have shorter stays in intensive care units and more timely “do not resuscitate” orders. These can prevent attempts to perform cardiopulmonary resuscitation and instead allow a natural death to occur. Patients and family members who are prepared experience lower rates of depression and anxiety when a family member nears death.
On the other hand, neglecting to discuss such issues can result in longer hospital stays, a greater likelihood of continuing life-sustaining treatment against a patient’s preferences, and poorer quality of life for patients and family members.
A buzz-kill conversation, but a crucial one
Conversations about death are difficult because they are multifaceted and complex. Simply bringing up the topic of dying can trigger a range of interpretations and concerns.
How might family members pursue such difficult conversations, what dilemmas and barriers exist, and what strategies might allow high-quality conversations to take place?
Dr. David P. Schenck, author of “Communication and Bioethics at the End of Life: Real Cases, Real Dilemmas" and his research assistant, Philip Barrison, recently undertook a study, which they intend to submit to an academic journal called Health Communication, to address these crucial questions. They conducted an online survey asking people to respond to a hypothetical scenario: “A family member has asked you to make medical decisions for them if they are unable to make them for themselves, but has not given you any guidance. You want more information about their end-of-life wishes, so how would you proceed to have this conversation?”
They asked participants to write about their goals, the barriers they think they would encounter, and strategies that might be useful.
Their data revealed four goals associated with these conversations: compassion, comprehension, conflict and commitment. Compassion reflects participants’ desire to make their family member feel wanted and needed, even while discussing a time after which they would no longer be around.
Comprehension relates to the need to be forceful about soliciting specific information while at the same time being gentle and respectful.
Conflict refers to the practical necessity of designating a single decision maker without provoking disagreements among family members. Commitment describes the tension between the honor and burden of being trusted as a decision-maker for a loved one.
Strategies that emerged from their analysis for achieving these goals included using humour when appropriate; discussing end-of-life issues more generally within the family rather than focusing on the person most likely to need assistance; reading a book, watching a relevant television show or movie, or discussing the end-of-life situation of another person; or suggesting some specific ideas and asking for a response.
While every family is different, family members should and often do find creative ways to have these conversations and avoid future problems.
There is no perfect template for an advance directive, or a foolproof guide to family conversations about death and dying. It may be emotional, there might be conflict, and it is unlikely that families can anticipate every end-of-life situation.
However, there is great benefit to starting these conversations at your next family gathering and keeping the conversation going as parents and spouses age.