Death: Denying to Discussing
The Medicalization of Dying
In 2013, the Vanier Institute of the Family published a report titled “Death, Dying and Canadian Families,” which highlighted Canadians’ uncomfortable relationship death. This was underpinned by a number of historical contexts that led to the “medicalization of death and dying,” during the period between the 1950s and 2000, which moved death into hospitals and away from the home (Arnup, 2013). As advances in science and medicine progressed with the perception that anything could be cured “physicians… focused increasingly on curate measures, [and] death came to be seen as a medical failure” (Arnup, 2013).
This increased preference for medical interventions removed death from the community and created a society of Canadians that did not see death until later in life. “People were no longer present at the time of death and, as such, death itself became shrouded in mystery and fear” (Arnup, 2013).
What we are witnessing today is a general avoidance of death and a portrayal of healthy, active living well past retirement (Arnup, 2013). SunLife Financial ran a campaign in 2011 to promote their “Money for Life” retirement program; it included a TV spot showing a retired couple, in motorcycle jackets, riding into the sunset on their yellow scooter (SunLife Financial, 2012). And there is certainly no shortage of propaganda in media and advertising selling society on longevity. When Martha Stewart released her book Living the Good Long Life: A Practical Guide to Caring for Yourself and Others just after turning 70 in 2013, she shared her belief that there is “a new generation of aging in the modern world” and that “70 is the new 50” (Peppers, 2013)!
While this might be attainable for some, the reality can be quite different. Even though life expectancy in Canada has increased to 81 years, (statcan.gc.ca, 2012), we are not without healthcare challenges. Recent research indicates that many Canadians experience death after a long period of illness and decline (Arnup, 2013).
The proliferation of stories describing how life will be long and vibrant, plus the aspirations of a few, highly visible people—such as Google Ventures head Bill Maris, who is dedicating more than $400 million to “slow aging, reverse disease and extend life” (Brooker, 2015)—is it any wonder that people are not open to accepting death. Adding to the fear and stigma that has been built up over the last few decades, it is perhaps not surprising that only 25% of Canadians over the age of 30 have completed plans for end-of-life (Environics Research Group, 2013). How can we plan for something we do not want to talk about? How do we accept something we are actively trying to delay, or stop from happening?
New Conversations in New Ways
There are some indicators that people are beginning to find ways to start the conversation about death and dying. And perhaps it is not surprising that a number of examples are arising from individuals and organizations within communities.
Gatherings, such as The Death Cafe and Death over Dinner, prioritize a less formal, and more comfortable, environment to foster open dialogue, free from stigma and fear of asking questions. The Death Cafe—a volunteer organization that began in 2011—invites people to local cafes, where attendees can have a coffee and discuss their thoughts with others. Although the organizer is generally someone with end-of-life care experience, their role is to guide and encourage people to openly share their thoughts with those at their table and freely follow where the conversation takes them. The Death Cafe has seen events take place in more than 26 countries in less than five years (Deathcafe.com, 2015). Toronto joined the movement in December 2014.
Let’s Have Dinner and Talk about Death (Death over Dinner) is similar in that it encourages people to invite their friends over for dinner and talk about “views on death to life through food and drink” (Let’s Have Dinner and Talk About Death, 2015). Founder Michael Hebb was asked to present the Death over Dinner concept at the 2013 TEDMED conference in Washington, D.C. (TEDMED, 2015).
Both The Death Cafe and Death over Dinner promote open conversations, in non-medical environments, with the ultimate goal of reducing the stigma and fear that surrounds our relationship with end-of-life.
There are also examples, such as My Gift of Grace and The Conversation Project, designed to encourage people to make Advance Care Plans (outlining wishes for end-of-life). Both projects use a friendly, approachable format to help people make the leap to thinking about what their preferences might be for end-of-life. My Gift of Grace is designed as a card game for families when everyone is home for Thanksgiving, and aims to “explore the use of design to create space for meaningful conversation about death, dying and life” (My Gift of Grace: A conversation game for living and dying well, 2015).
The Conversation Project provides a conversational toolkit that can be downloaded from a website, and that encourages people to have discussions around the kitchen table, rather than in the Intensive Care Unit when there is a crisis (theconversationproject.org, 2015).
Some municipalities are also taking initiatives to ensure, that citizens are making Advance Directives. In La Crosse, Wisconsin, almost 96% of people who die have made Advance Care Plans which is 60% more than the average across the U.S. (NPR, 2015). Driven by a local resident, and a medical ethicist in the hospital who witnessed many families suffer with decision-making for a loved one who had not expressed their wishes, initiative has nurses trained to talk to patients about planning long before a crisis occurs. Now described as “the town where everybody talks about death,” La Crosse has the lowest healthcare costs associated with end-of-life in the United States (NPR, 2015). Closer to home, a recent study suggests that Canadians may be making a shift as well. Even though only a quarter of people over 30 have made plans, the study revealed that “eight in ten Canadians are at least somewhat comfortable in discussing end-of-life care issues” (Environics Research Group, 2013), which is encouraging.
A Doctor Shares
From the perspective of the medical community, Dr. Atul Gawande’s 2014 book, Being Mortal, suggests that doctors are also beginning to acknowledge the need to have conversations about end-of-life preferences, but, it is also the responsibility of healthcare practitioners to provide a realistic picture of outcomes associated with curative treatments offered (Gawande, 2014). The success of the book extended to television with a documentary series on PBS’s Frontline, which shared patient and practitioner stories at end-of-life (PBS, 2015). The series encouraged viewers to think about #whatmattersmost (Twitter.com, 2015) by igniting an ongoing Twitter conversation about aging, death and making informed choices about our final days.
Fear and denial are very real aspects of how Canadians relate to death and dying. Yet opportunities are emerging within the community to offer innovative, and non-medical, platforms to encourage discussion.
It is the uprising of events, such as these that prompted The Atlantic to declare that “Death
is Having a Moment” (Hayasaki, 2013), reflecting an emerging shift in how society is coming to terms with death and dying. By no means do these signals suggest we have moved passed the fear and denial of the last 50 or 60 decades. It does, however, indicate that there is a window opening on which to build upon. As aging demographics collide with an already-overburdened healthcare system, all Canadians will be encouraged to make decisions about end-of-life preferences and accept that, despite advances in curative treatments, life does not go on forever. If we are to make decisions thoughtfully, we need to re-humanize death and minimize fear to allow for open dialogue. Design interventions need to acknowledge both the stigma attached to talking about death as well as the potential for creating space for conversations when supported by frameworks that are comfortable, human and conversational and that are designed to take place far in advance of a healthcare crisis.