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Empowering people to talk about end of life planning

Author: Gentle Dusk
12 December 2017

In this blog, Gentle Dusk explain the work they are doing to help people take control of their end of life plans.

How do we make it ok to talk about death, dying and bereavement? How do we ensure both staff and the public are aware of the importance of both talking about and planning for the end of life? And perhaps most importantly, how do we get them to be “conversation-ready”?

Good commissioning in end of life care covers improving contracts, introducing quality standards and evidenced-based frameworks. This is not enough though; it simply does not address the need for staff and the public to be ready for “the conversation”. Nor is it helping people plan end of life before it is too late.  Our experiences around death, dying and bereavement will not improve without lifting the taboo. If, as a society, we remain stuck with death being the unmentionable then staff will always find it difficult to overcome the barriers to starting conversations and the public will be reluctant to talk about dying.

Mireille Hayden, senior partner at Gentle Dusk has first-hand experience of the devastating effect that this lack of openness and lack of planning can have. In 2010, her mother had an unexpected severe stroke at the age of 67 and without any plans or any prior conversations about her wishes the family were at a loss as to what to do amidst the devastation of grief.

Major family conflict ensued with lasting negative impact on the family. “I just want to make things better for others” says Mireille “because I know that with open conversations and an advance care plan it could have been a completely different experience. The loss is still there but not the trauma that can go alongside it.”

In 2011, Gentle Dusk, a socially minded partnership, was established to address exactly this kind of situation. The partnership focusses on enabling conversations about death, dying and planning for the end of life and turning the big taboo into normal, everyday dialogue. How? By delivering volunteer-led public awareness raising activities in the community alongside experiential training programmes for the workforce.

How they are creating change

Future Matters - a volunteer-led programme: empowering communities to talk about and plan for the end of life

The Future Matters programme is training volunteers to become peer educators in end of life planning. The volunteers are role models; champions for the cause within their local communities. The training equips them to talk to the public about why it is so important to plan for the end of life and how to do this. They are delivering workshops, talks, Death Cafes and a range of events during Dying Matters week. They are also supporting members of the public, through individual support, to put their plans in place. This includes helping them to write advance care plans and encouraging them to share these with their GP and those close to them.

Workforce training programmes

Gentle Dusk are delivering a range of training programmes that are supporting staff in health and social care and the voluntary and private sectors to initiate conversations about death and dying. The courses are engaging and participatory and are providing participants with a range of fun and engaging materials and tools to initiate and support conversations. Participants are being enabled to engage with and empower their service users around planning for end of life care. One of the successes of these programmes is due to the fact that it is working on two levels: on a personal level the courses are enabling participants to feel comfortable talking about and planning for their own death and starting conversations with their friends and families. On a professional level, participants are gaining the knowledge, skills and tools to engage with and empower their service users to talk about and plan for their end of life.

Workshops for carers

Gentle Dusk workshops are supporting carers to explore the challenges and benefits of talking about death and dying with those they are caring for, their families and the health and social care professionals that are supporting them. They are helping them to plan for their own future including completing an advance care plan and encouraging them to think about writing a will and appointing Powers of Attorney.

What the programmes have achieved

The Future Matters volunteer-led programme has been commissioned in Islington by the Clinical Commissioning Group for the last five years. Each year the volunteers deliver around 20 events reaching over 450 local people. These events lead to requests from participants for an appointment with a volunteer to put end of life care plans in place. Future Matters Islington delivers over 100 appointments in year that result in 60 end of life plans.

Gentle Dusk has also been partnering with St Christopher’s Hospice in Croydon to deliver the Future Matters training programme for their volunteers - 57 events have been run in the first year reaching 800 members of the public.

The workforce training programmes are equally as successful with 100 per cent of participants stating they would recommend the training to others. In the last three and half years, 325 staff from 25 Islington based organisations have attended the training. One such organisation is Centre 404; an organisation that supports people with learning disabilities. As a result the organisation has produced an end of life care policy, developed their own easy read Advanced Care Planning which staff are now completing with their service users and they regularly deliver awareness raising events for carers, as well as activities during Dying Matters Week.

Talking about death can become more comfortable. It can even become infectious. “I hope we can spread these programmes as widely as possible” adds Mireille. “The advantages are enormous. Less worry and anxiety about the future, people feeling more empowered, people’s needs and choices get met, less crises, less conflict between family members. And how about if we can create the change that would ensure that for future generations the death taboo is a thing of the past? That would be amazing!”

For more information visit Gentle Dusk

See more articles in People and places

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