Two people hold hands over a hospital bed

Being rock – volunteers’ role in end of life care

Published: 14/06/21 | Categories: Author: Fiona Liddell

Fiona Liddell, Helpforce Cymru Manager, highlights the increasing need for volunteers to support end of life care.

GROWING, UNMET NEED

The care we need at end of life is far more than clinical treatment. Rather, a holistic approach to care is needed, with regard to the psychological, emotional, social, spiritual and existential wellbeing of patients and their families. Palliative care, which aims to optimise quality of life whilst minimising suffering, is based on this holistic approach.

More of us will need support and care of this kind at the end of our lives, whether in hospital, hospice, at home or elsewhere in the community; mortality trends show an increase in age-related deaths from chronic illness.

A report by Hospice UK  in 2020 highlights two challenges reported by the sector: the level of unmet need and attracting and recruiting sufficient staff numbers to meet future demand.

This is an area in which volunteers can make a real difference. Here are some examples, which we would do well to build on, in anticipation of the growing need.

VOLUNTEERS AND HOSPICE CARE

Volunteers have played a prominent part in the hospice movement since it first began. As well as taking on management and fundraising roles, volunteers have direct involvement with clients: spending time listening and discussing anxieties and concerns, engaging clients in creative activities and complementary therapies, or holding someone’s hand during their last hours of life, providing counselling, pastoral care and bereavement support.

They give information and gather feedback from patients and can be their advocates, expressing patients’ wishes to professional workers. They may support clinical interventions, such as physiotherapy.

Skanda Vale hospice, for example, depends upon about 50 volunteers to be such a ‘special place of hospitality and total care’.

As representatives of the local community, volunteers also provide an important two-way channel of communication, bringing awareness of local community life and views into the hospice and raising awareness of the organisation’s work within the wider community. In this way they contribute to public education agenda of Compassionate Cymru and help to break down taboos around death and dying.

A report published in 2012 into how hospice services will cope with a sharply rising ageing population in the next 10-15 years called for volunteers to become fully integrated into clinical teams and to provide more direct support to patients and families, not only in hospice services but also in the community.

VOLUNTEERS IN THE COMMUNITY

There are some successful examples of volunteering to support palliative patients within the community. Given that most people’s preference is to die at home, schemes such as these should be more widely available across Wales.

At Hahav in Ceredigion, more than 40 volunteers are trained to provide practical help to end of life patients in their homes. Others support fundraising through the Hahav charity shop, or help to run wellbeing activities at the organisation’s new (non residential) premises in Aberystwyth.

The NOSDA project grew out of a community development initiative in Pembrokeshire. Trained volunteers are able to encourage and support conversations around death, including within participating care homes.

VOLUNTEERS AND HOSPITAL CARE

Three Health Boards in Wales (Powys THB, Hywel Dda UHB and Aneurin Bevan UHB) are developing new volunteering companion services to support end of life inpatients. Due to Covid 19 restrictions, two of these have begun as a virtual service, with volunteers based in their own homes. They hope to enable face to face contact on the wards as soon as circumstances allow.

These projects are part of a collaborative programme by Marie Curie and Helpforce, with funding from Welsh Government and National Lottery Community Fund and support from Helpforce Cymru.

Learning from the evaluation of these projects will be published later this year, a volunteering service guide for a previous project in Liverpool is already available.

EVERYONE’S BUSINESS

The message that was reinforced through events during Dying Matters Week is that everyone should become more informed and confident in talking about death and dying.

Participants in our own (Helpforce Cymru/ Compassionate Cymru) event suggested we should ‘grab any opportunity’ to address important but sometimes difficult issues, perhaps triggered by a film, news report or by life changes such as moving house.

The point was made that it can be easier to open up to a volunteer than to family and friends. Volunteers, however, need to be well trained and supported so that they can be the best possible support to others and to safeguard their own mental wellbeing, no matter what is said, heard or experienced.

BEING ROCK

The priceless gift that volunteers can give, in really listening to those at end of life, is most beautifully expressed by Mandy Preece as ‘being rock’ as she describes here in a short training video.

ABOUT HELPFORCE CYMRU

Helpforce Cymru is working with Third Sector Support Wales (WCVA and 19 CVCs), Welsh Government and other partners to develop the potential of volunteering to support health and social care services in Wales.

Visit the Helpforce Cymru webpage, or to receive email updates, sign up here and choose the option ‘health and care volunteering’.