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Talking about dying and death - it's a good thing!

Here in the Frimley Health & Care Integrated Care System, the End of Life Care team wanted to address the difficulty people have with talking about dying and death.

Death Café

In late 2019, we ran our first Death Café pilot with one of our local bereavement support providers, The Brigitte Trust. The session followed the guidelines set for running a Death Café, and twelve people attended the session.

Following good feedback from this pilot group, we decided in early 2020, we would look for funding to run a series of death cafes across the Frimley system area. Just as we were planning the COVID-19 programme, the first lockdown hit. As the number of deaths continued to rise it became even more apparent people needed to have the opportunity to discuss death in a safe environment.

Death Fair

Following discussions with a local East Berkshire vicar, Rev David Downing, who had been running a regular Death Café following discussion of different options that would have an impact for more people, we decided on a Plan B; which was to run a whole day Death Fair.

This meant five different sessions via Zoom that people could drop in and out of at will. However, the organisation for a one-day event proved too difficult to manage successfully during the initial COVID-19 NHS response.

So, we arrived at Plan C, which resulted in five one-hour Death Fair sessions, held via Zoom running from 6 pm to 7 pm on a Wednesday evening once a month from November 2020 to March 2021. This was ambitious due to it being within the middle of the second lockdown, but fortune favours the brave!

How the Death Fair grew

The Death Fair team used Eventbrite to offer the five sessions, which could be booked altogether or singly, depending on people’s interest and provided a fairly automated system, which allowed us to remind attendees nearer the dates and offer an ability to send out information after each event.

The sessions were run on Zoom as this offered more flexibility on managing the sessions and allowed us to poll attendees before they finished the session.

The flyer for the events was designed in house, and although hard copy distribution was planned, most of the advertising was via email, word of mouth, Twitter and Facebook. Two of the team also posted on LinkedIn and received over 100 views.

The name for the event, Death Fair, did cause some concern amongst both attendees and clinicians as there is still a stigma and taboo attached to talking about dying and death, however no other name could be found and in the event, the Death Fair name has worked well. 

How the Death Fair sessions have worked

The sessions were run with speakers from many different organisations including GPs, hospital consultants, nurses, hospices, solicitors, funeral directors, different religions, bereavement services and carers services, giving their time for free.

The programme followed a person’s journey from legal and practical, to medical & palliative care, to last few days, to post death arrangements and Death Cafes. These sessions were run with a core team of three, which included:

  • A host to set the scene, share ground rules on keeping comfortable with the process and to keep the sessions running smoothly and on time
  • An organiser to check on bookings, update the agendas, slide sets, FAQs and on the day, check on the chat box and identify any questions (from hands raised)
  • IT support on the day including slide set and poll management

A short pre-meet a couple of days before was set up to ensure speakers knew what to expect and to test the Zoom link for each session.

Death Fair feedback

Of the 242 people who booked on to the five sessions, 131 actually attended and the feedback was excellent.

The polls provided the following data:

  • Session 5 - What is a Death Café?: 100% of attendees reported the session gave them more confidence to speak about dying and death
  • Session 4 - What happens when someone has died?: 93% reported the session was very helpful
  • Session 3 - What might the last few days of life be like?: 96% reported the session gave them more confidence to speak about this aspect of dying and death

The frequently asked questions list was updated after each session and additional information and links were sent out after each session.

So what did we learn?

Safe space

There is a need for a safe space to discuss people’s needs around dying and death. In a time of COVID-19 when a Death Café was less of an option, the Death Fair sessions proved an effective alternative.

They can also be used where face to face meetings are difficult to organise or attend and can be run in conjunction with a Death Café programme, to provide alternatives for people who might not otherwise feel able to attend a Death café.

Sensitive handling

The Death Fair speakers were able to demonstrate extremely sensitive handling of this very difficult subject area. This was reflected in the feedback received, people felt comfortable and reassured by the professionalism of the speakers, with feedback including, 'thank you, a difficult subject sensitively presented', and, 'thank you so much - your passion and commitment to caring for dying people and their loved ones shone through.'

Concise, visual and meaningful

Where possible, slides were kept to a minimum and where appropriate, pictures were used. This made the sessions very easy to follow and provided more engagement opportunities for the attendees. 

Additionally, the Death Fair sessions worked really well and we have proof of concept. The session outline can also be replicated quite easily and the sessions also provide a good alternative for people not able to get out to a different location but who still want to participate. 

The pre-meets set up using Zoom also worked well, including getting the speakers adjusted to using Zoom, being able to refine their slides to fit with other speakers, and, to be able to refer to the previous speaker’s presentation material making the whole event feel more cohesive.

Even with the pre meet, the IT still let one of the speakers down on the day (we could hear her but not see her), but the beauty of Zoom was that she was still able to present with the slides.

Some sessions could not be broken down into smaller sessions in a meaningful way - for example, post death arrangements - as these covered a really large number of different aspects (including pastoral care, death certification, funeral arrangements, bereavement services and carers support), and we did overrun on time for this one. Next time we will make this session slightly longer. 

In summary and forward planning

Overall, the sessions were a success and we intend to offer a Death Fair Toolkit including a template pack, which we will make freely available to any organisation wanting to run local Death Fair sessions. Interest has also been received from neighbouring ICS' and the information has been shared.

We are still exploring to possibility of doing podcasts with some of the speakers to see if that will also help encourage the conversations about dying and death.

This was prompted by an attendee admitting they 'found this session really informative and would see some value in the 2 speakers releasing some sort of podcast'. 

We are also using the feedback via the final Zoom poll to shape the Dying Matters Week engagement theme of 'Planning to Die in Peace' in May this year.

Find out more

For more information, including the Death Fair Toolkit, please contact:

Cyane Sullivan and Nancy Makamba

End of life care leads

NHS Frimley CCG

frimleyccg.eolcare@nhs.net