As participants joined the call, we spoke a little about the ways that death has impacted our lives. Some had recently mourned the loss of relatives, one of which was related to a COVID infection. Some were navigating the care of parents, including discussions of end of life issues.
The role of a "death doula" was discussed, which generated interest among participants who had never heard of them before. One of the participants described how they are the opposite of "birth doulas," mainly offering support and assistance to people who are coming to the end of their life.
We also had members of the Death Cafe
community present. Death Cafe meetings are similar to Kitchen Talks, with each meeting focused on some aspect related to end-of-life. While Kitchen Talks often revolves around polarizing issues in hopes of creating spaces for people to find common ground, Death Cafe is more of a safe space for people to bring their stories and speak to their experiences or concerns connected to death.
Concerns voiced by participants at this meeting revolved around the legal structures connected to death, mainly medical assistance in dying (MAiD). This was a divisive element in the group, as some described opposition to certain MAiD structures and laws, while others welcomed them. Other issues that were brought up involved palliative care (especially in the context of MAiD) and how faith perspectives impact how we approach or encounter death.
We divided up into small groups to discuss what it can be so hard to talk about death. Participants were encouraged to explore why it's so controversial and to identify more concrete issues that divide people.
When we returned, a number of participants from the separate groups talked about how spiritual practices can prove divisive, especially when a person's metaphysical belief structure contrasts with the legal structures in a given country. For faith traditions that believe in emphasizing palliative care over MAiD, for example, it can be difficult to support said structures. And if a religious doctor were legal required to perform MAiD or to give referrals, this could provoke deep conflicts of conscience, and possibly spark resistance to specific laws.
Atheistic perspectives were also discussed, particularly whether it is a concern that so many death-support services are framed in religious terms, especially when it comes to hospital support staff (which can include chaplains). There can also, at times, be a "missionary" element to the way some religious care workers approach atheists near death, which some atheists consider manipulative given the vulnerability of people near death.
Another point brought up was the issue of control and agency. For many, death proves controversial because it is so outside our control. Practices like MAiD can add an element of control, and so some supporters may resent attempts from members of the population that seek to limit access to it. The issue of how much agency someone should have in the face of death was a particularly thorny issue (one that would return later in the meeting), as well as the question of who
should have how much agency. Should MAiD be offered only to terminal patients in pain, or should it be offered to society at large? Should we try to convince people not to undergo MAiD, or would that be an imposition of our values? When are discussions of MAiD actually a cry for help that should be responded to in a way that presents support for other options? And how old should people be when they have access to MAiD: should young people have that access?
The issue of "death phobia" was also discussed. For some, "death phobia" was a negative trait of a society that may not know how to discuss death (and therefore avoids thinking about it, with potentially unhealthy consequences). One approach to this is to speak about death more often (advocated by the Death Cafe community), and possibly provide support to people so that we learn how to accept death and even frame it in a positive light.
For others, "death phobia" was framed positively, with some communities spending a lot of time trying to figure out how to extend life or even end death altogether. This gets into the territory of transhumanism
, which is a movement dedicated to enhancing or augmenting human life with the help of technology. This can involve increasing our physical or mental capacities, even to the point of moving our consciousness into bodies that do not age or die. For transhumanists, "death phobia" is a healthy reaction to a terrible reality that can provide motivation to develop technologies that will extend life, perhaps (eventually) indefinitely.
With the issue of "death phobia," one complicating factor with these conversations is the moral component associated with one's values. For some, acceptance of death is seen as a positive practice, which can frame attempts at transhumanism as negative or "beside the point." From the other side, some proponents of transhumanism may see acceptance of death as foolish or backward.
After this discussion, participants were asked to envision their "other" when it comes to their position on death. They described their "other" in the chat, with some examples including: a) people who don't care about safe death care, b) authority figures declaring certainty in an afterlife, c) people who look down on attempts to extend life, d) people who want to live forever, e) people who think death is the end.
Different participants expanded on their "other" for some time, which occasionally prompted other participants to say "your 'other' sounds like me." We then discussed whether we feel comfortable sharing a space with that "other" and why. Some said that they constantly share space (and a culture" with their "others" and they're used to it. Other participants said that, in moments where they would need to express their values or make end-of-life related choices, it would be hard to share space with their "others."
As the evening started to come to a close, we returned to the issue of choice and agency. Participants were invited to identify, on a scale from 0-100, to what extent they felt people should have a choice in how and when they die. Some marked themselves at 0%, with an emphasis on accepting what comes when it comes. Others advocated a 100% position where all people were able to choose their time to go.
There were positions scattered through the middle, which included a) death being, for the most part, outside of our control but our reaction to it being a matter of human agency, b) respecting DNRs and turning off life support while not going as far as MAiD, c) wanting full control when it comes time to die, but not wanting to be able to hasten death and more.
While many emphasized the benefits of choice, one participant near the end affirmed her belief that sometimes intervening when someone says they want to die can be an act showing that we care, and that sometimes what a person wants to hear is that someone cares. There was also a move against narratives framing "being a burden" as something negative, claiming the possibility that a person might "want to burden their loved ones," that love, in some way, necessitates being a burden to each other in ways that offer opportunities to love and be a community. There was also the point maid about whether there is something beautiful, generally speaking, in embracing the realities that we do not, in the end, choose.