Can we make it easier to talk about death and dying?
A blog post written by Dr Sara Pinto, Consultant in Internal Medicine at Porto, Pedro Hispano Hospital, Portugal (Short-term placement with Southern Adelaide Palliative Services in February - March 2020)
We know that many people don’t feel comfortable talking about death and dying. But we also know that most people in Australia now have direct or indirect access (through family and friends) to the online world. This online world has also made available new ways of communicating and ways of sharing information. As well as face-to-face encounters at death cafes and discussions with friends and family, we see websites, apps, videos, Facebook pages, infographics, and even MOOCs all engaging with death and dying. The CareSearch team was keen to understand what online “things” are useful to the community dying. In 2018, as part of the Dying2Learn MOOC, we asked participants in one of the activities: ‘What “online thing” could make it easier to learn about or talk about death and dying?’ 463 participants provided a response. We extracted their answers and undertook a basic content analysis to understand common and valuable suggestions and proposals.
One of the most frequent suggestions was the creation of an online chat room/forum/blog, that could allow people from all backgrounds to post their thoughts, doubts, and experiences relating to death, dying and palliative care, like an “online death cafe”. Almost all of the participants that suggested this approach referred to an idea of a safe shared space where anyone, publicly or anonymously, could expose their own thoughts and anyone, with or without a medical background, could answer their questions and address their issues. Building a phone application (app) was also a common response.
The participants also felt the digital platform provided an opportunity to allow people to hear real individual stories around death and dying. Participants wanted to be able to listen to documentaries and interviews of people in the process of dying. Short films with personal experiences; interviews with different people and their perspectives and experiences on death were some of the suggestions. Some participants even suggested a model similar to the show “You can’t ask that” by ABC TV.
The third most frequent proposal was the development of a “virtual hospice” website or “deathapedia”, as two of the participants described it. The participants suggesting this felt this approach meant that all the information regarding death, dying and palliative care could be in one place, without the need to search multiple websites to find things. They suggested the website could have everything from reading material (including audible books and online versions of books, articles, other websites), to information on where to find key resources such as local providers, legal issues, and counselling to examples and customs on death and dying from around the world. More online courses like the Dying2Learn MOOC were frequently suggested.
The digital footprint received many comments. People were not only concerned about how to delete their digital footprint when they die but mostly if they should and if there is a way to use it to help with the grieving process of their loved ones so they can consider the risks and benefits of the decision (delete versus keep). Supporting decision-makers to understand and access the person’s wishes, preferences, online passwords, digital bucket list, health, and funeral plans, etc. was seen as another digital opportunity.
There were also suggestions about a “digital cemetery” and a self-journal webpage, where the dying person could write an autobiography of their life for future generations to access in an alternative to traditional burials. Digital platforms could enable words, photos, videos, and other applications for thoughts and ideas to be shared with loved ones after their death. One participant described it as “the footage of our life’s journey”. Others considered the possibility of using social networks to inform others of their loved one’s death and also using social networks as a form of memorialisation and keeping their loved one’s memory alive. A couple of the participants also suggested that digital footprint could be used as a way of exposing their own wishes, preferences, online passwords, digital bucket list, health and funeral plans, etc that could only be accessed by a limited number of people.
Everyone felt there was a need for more digital publicity and marketing. Many participants suggested using these platforms and pop-up ads to promote death encounters, meditation groups, support groups, online courses, articles about death and dying, etc. Some went further and suggested using short clips (similar to regular commercials) to promote education on death. TED talks and Spotify podcasts were specifically identified as an opportunity. The possibility of a symbol to speak to death and dying and palliative care was also raised. There were also many suggestions about children and teaching children about death. Participants proposed a range of different options from specific courses for children or teachers of small infants to online games that speak about death and dying, starting discussions with the death of a pet; and an online children’s picture storybook.
The responses of the 2018 Dying2Learn participants show us that the digital world has many pathways and mechanisms that can support conversations and awareness of death and dying. Our community has a developing relationship with the internet, and our messages and activities need not only to reflect this but to incorporate and leverage these capabilities.
Dr Sara Pinto, Consultant in Internal Medicine at Porto, Pedro Hispano Hospital, Portugal