End of life, minus the strife

• Written by: Amanda Ward — Friends at the End SCIO — Chief Executive
• Published: 27th October 2020

Amanda shares how the Wellbeing Fund Grant enabled FATE to raise awareness of end of life planning and provide direct help to those in need.

Most people do not like to face their own mortality but the past few months has left very few places to hide from this. Talking about the end of life can be upsetting, frustrating and distressing, but it needn’t be. Friends at the End (SCIO) works to advance human rights (especially of those in need by reason of age, ill health, and other disadvantage) by increasing public knowledge concerning end of life choices and dignified death. Our approach is based on personalisation, compassion, kindness, autonomy and understanding.

We provide support to those suffering distress at and towards the end of their lives. This includes the advancement of education relevant to the processes of death and terminal illness and research into the causes, cures and prevention of distress in the dying and those caring for them. Our long-term aim is to see the passing of assisted dying legislation, until this happens, we work to ensure that every citizen has a Good Death within the current legal framework.

Friends at the End formed as a voluntary society in 2000 and received charitable status in 2018. We have supported hundreds of people through the end of their lives and been involved with the preparation of two parliamentary Bills in Scotland. We sponsor the Cross-Party Group on End of Life Choices in the Scottish Parliament.

On a practical level, we assist people to put their end of life documents in place. As well as wills, this includes Powers of Attorney (this link will take you away from our website), a legal document that names someone else to help make decisions with you or on your behalf; Advance Directives which record any medical treatments you don’t want to be given, and Advance Statements (this link will take you away from our website (this link will take you away from our website), which set down your preferences, wishes, beliefs and values regarding future health or social care.

Calls and enquiries to Friends at the End (this link will take you away from our website) have tripled since this time last year and we quickly realised that our service users faced other issues: loneliness, isolation, feeling a lack of control. The Wellbeing funding enabled us to allocate considerable staff time initially towards publishing articles and information in a range of media to create awareness of the importance of end of life planning – and then to providing direct help to individuals.

Of necessity this is specialised work, involving considerable time to support people. We supported tens of people through the full stages involved and referred them to lawyers to draft the relevant documents (Powers of Attorney etc), and paid their legal fees. However, we also provide more general help to people with queries or concerns on such issues, and reached several hundred through our newsletters, articles in the media and website information.

We realised during the course of the project that some people find such issues very distressing and were seeking help of a counselling nature, rather than support on the legal processes, and so with effect from 1 Sept we have set up arrangements with a counsellor where individuals can be referred to the counsellor and FATE will pay the fees.

Over the past few months, our community has faced unprecedented pressures due to COVID-19. FATE’s support services have experienced a surge in demand and our staff have supported hundreds of people – proactively checking in with some of those who had previously accessed our services, as well as supporting people who were new to us.

We have worked hard to adapt our services to meet people’s needs during lockdown and have provided lots of new support online. But many people, are not computer literate. This means that the telephone support offered by our staff has been crucial.

This service is invaluable, but impossible without sufficient funding. The Wellbeing Fund has enabled FATE to meet the increased need for support at this time. In Scotland, our local area knowledge and connections to health and care experts was essential to deliver a truly bespoke service. We have local groups spread from Dundee to Glasgow and communities in between. Our active network of members helps us connect with people and their family members across Scotland. Local group meetings have moved online and are a place for friendship and debate.

We are most proud of the times when families get in touch. Tracey – who needed acute care at the end of her life was so unwell that she couldn’t talk, couldn’t express her own wishes and values – but she had her end of life pack with her, and it spoke for her. One of the family members said that it was like a shield against aggressive treatment or overtreatment.

For the family, this was a ‘good death’, one where Tracey’s wishes were respected and cared for. If you put everything in place to safeguard yourself, you’ll know that you have your end of life plan to speak for you, should you become ill or not be able to communicate your wishes. It allows people to get on with actually living life, knowing that you don’t have to be scared or afraid, because you’ve done everything in your power to make the end of life a good one.

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