Planning for death in an ever-increasingly digital world-7th Int African Palliative Care Conference

Categories: Care, Featured, Opinion, and Research.

COVID-19, technology and communication:

Over the last 10 years the internet and connected devices (like mobile phones, laptops etc) have revolutionised the ways in which people access information, behave and communicate. COVID-19 and subsequent ‘lockdowns’ further increased the mass adoption of certain communication technologies across the globe. Zoom for example is a business web conferencing software. It rapidly transitioned from being a ‘business to business’ solution to a consumer solution at the start of the pandemic enabling communication to take place between friendship groups and family members. During Christmas 2021 parts of England were in lockdown. Me and my wider family met virtually on Christmas day and I ate Christmas dinner simultaneously with my parents over a Zoom call. Disclaimer: This was the worst Christmas I have ever experienced, it did however allow for some Christmas traditions to take place and a shared experience with loved ones.

Health and social care professionals used Skype and other video calling apps during the pandemic and helped facilitate ‘goodbye’ calls by those dying from COVID-19 in clinical settings. When patients were unable to speak, professionals would sometimes leave a phone on the pillow next to the patient. This might allow a family member one to hear the sound of the patient’s breath, provide time for reflection and enable a one way conversation.

Attitudes and behaviours around video streaming funerals (sometimes called funeral streaming) changed in many countries during COVID-19 lockdowns. Many funeral ceremonies were unable to take place or the number of those allowed to attend were restricted. After the first COVID-19 wave nearly 70% of those surveyed (Digital Death Survey 2020) stated that they ‘would not mind’ if their funeral was video streamed.

Many people no longer print photos. Instead photos are shared on social networks and solely reside in a digital format. This is one of the factors that had led to the normalisation of ‘grieving online’. People will often visit someone’s Facebook or Instagram account after they have died to view photos, videos and send a condolence message.  The normalisation of grieving online has been further exacerbated by the number of people who have watched a funeral service of a loved one online or heard about the importance of a funeral stream from someone who is recently bereaved.

The changing role of the professional 

It is important that professionals working within the healthcare, social care, bereavement, funeral, religious and the legal sector are attuned to society’s changing attitudes and needs.

Health and social care professionals must understand the increasing importance of people’s digital lives from both a sentimental and monetary perspective. Africa for example accounts for 70% of the world’s $1 trillion mobile money market (GSMA 2021). What happens to a patient’s mobile money account when relevant passwords have not been shared can differ from country to country and platform to platform. Another question to consider is what happens to a patient’s photos saved on a password protected mobile device and how will friends and family members know who to call when inviting friends and family to a funeral or wake?

Conversations that explore technology, planning and death need to take place throughout our lives. They need to be revisited when personal circumstances change and when new online services are used. Such conversations are an emerging area of advance care planning. Professionals need to be upskilled and incorporate aspects of this new technological reality to their practice.

Society needs to become empowered and take ownership of both their physical and their digital lives. We all need to understand that our ‘digital legacy’ will outlive us. A useful task is to imagine what will happen to our own online accounts and the assets they contain after we die. We might then make plans for our digital lives through conversion, external platform processes and by documenting them within a ‘Social Media Will. Pre-planning might significantly reduce the costs associated with death and dying. It can also help reduce the amount of stress and confusion caused when someone dies.

About The 7th International African Palliative Care Conference

The 7th International African Palliative Care Conference co-hosted by the African Palliative Care Association (APCA) and the Worldwide Hospice Palliative Care Alliance (WHPCA) will take place between the 24th-26th August 2022.

The focus of this year’s conference is ‘Palliative Care in a Pandemic’. It will draw upon experiences, new ways of working and lessons learned from the first two waves of the global COVID-19 pandemic. Through discussion, learning and development new and better ways of working will be formed ahead of future COVID-19 waves and future pandemics.

About the author

James Norris is the founder of Digital Legacy Association and MyWishes. He is a digital research fellow at Michael Sobell Hospice and a graduate from the Fellowship in Palliative Care programme run by the Institute of Palliative Medicine, India. James has consulted various governmental and non-governmental organisations across the globe in areas relating to death and the internet.

James will be expanding upon the areas addressed above at the 7th International African Palliative Care Conference. The focus of the sessions will be to upskill and empower professionals in areas relating to planning for death in today’s digital world.

He will be contributing to the pre-conference, Digital Health workshop on the 23rd August. The title for this talk is ‘The importance of planning for death digitally and grieving online‘. On the 25th August, James will explore how compassion can be integrated into communities through the use of digital technologies. It will draw upon work designed and delivered by both MyWishes and other ‘tech for good’ organisations. The conference programme can be found by clicking here.


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