Older people want & need to talk about death, dying & bereavement. We’re making that happen at Irish

Description

In Ireland, as in all Western countries, most people die in older age. Yet there is little explicit engagement, discussion, planning and support around dying, death and grief in our health and support settings.

In 2023, 4,570 bereaved family members and friends participated in the first National End of Life Survey. 94% of those who had died were over 60 and communication was cited as a key problem in the care that loved ones received in the last months and days of their life.

Irish Hospice Foundation (IHF) is getting people talking and engaged with end of life planning and care by providing a suite of programmes that provide support to older people to enhance communication.

We achieve this through a number of aligned national initiatives aimed at improving the experiences of all people and their families facing death and bereavement across all settings.
For our older population specifically, these include; 1) Think Ahead, 2) Caru: a continuous learning programme in Nursing Homes, 3) Bereavement Support Line.

‘Think Ahead’ is a practical and customisable tool for advance care planning, providing clear guidance to allow people to consider their end of life wishes and preferences (for example, the type of funeral they would like). It encourages conversations between family members, healthcare staff and others, and provides a space for decisions to be clearly documented, ensuring that a person’s wishes are heard and respected. Through public engagement with older people’s groups, men’s sheds, healthcare and nursing home settings, talking about and planning for the inevitable is becoming more normalised and is acceptable to older people and their families. As one older person put it: “This information got me seriously thinking about what I want for my Final Journey. It is, after all, my Final Journey, and mine alone – and I want, as I best can, to be the Mistress of this Journey”.

Caru is a national learning programme that supports all staff in Nursing Homes. Caru was developed in response to the findings from the Covid-19 Nursing Home Expert Panel 2021. In partnership with the HSE the mission of Caru is to improve the quality of end of life care across the Nursing Home sector. The programme provides a comprehensive package of free training, supporting staff to learn through reflective practice and inspiring them to implement quality improvement initiatives in their areas of practice, for the benefit of residents and older people they support.

The work is shaped by a spirit of compassion for people in their care, it is underpinned by expertise, experience, and research. Over 200 nursing homes have participated in the Caru programme to date.

The objectives of the Caru programme align closely with the findings of the National End of Life Survey, Caru brings confidence to Nursing Home staff to support residents in using the Think Ahead planning pack, to document and discuss their wishes for end of life.
An integral component of Caru is to enable Nursing Home to signpost residents and families to the Bereavement Support Line.

The Bereavement Support Line (BSL) was set up in June 2020 by IHF (supported by the HSE) to support those bereaved during COVID-19. Extended beyond the pandemic, this valuable service is open to all, with the largest cohort of callers being older people whose life-partner has died. Many are alone for the first time in their adult life. The support line offers compassionate and grief-informed support, providing accurate information and linkage to community resources. The majority of calls focus on providing care and comfort, providing simple psychoeducation and guidance on the impact of grief and providing up-to-date signposting, especially for older callers who feel lonely and isolated.

The Bereavement Support Line is staffed by grief-trained volunteers around the country who work from home and dedicate one morning a week to the service. They are trained to be able to offer a safe space to grieving callers but also to help them to understand the grieving process, using clear and accessible psychoeducation principles, and to signpost them to practical and counselling supports, where needed.

The initiatives highlighted here are national efforts to improve the experience of dying and bereavement for the older people in Ireland. The three programmes can be viewed as a continuum of a family journey – planning and talking about death can help to avoid regrets, provide comfort and reassurance and a space to air concerns; excellent care and palliative care at the end of life can be viewed as a human right; these in turn provide a foundation for healthy grieving and opportunities, providing a familiar and safe space to combat the loneliness that can accompany grief in later life.

Aim of Initiative

The overarching aim of these initiatives is to empower conversations with older people, across all settings, to ensure they have the best end-of-life care possible and that their loved ones are supported in their grief.

‘Think Ahead’ provides clear and concise guidance to help people to consider their end of life wishes, and any other preferences they have including for example the type of funeral they would like.

The Caru Nursing Home national learning programme gives nursing home staff the knowledge and skills to best support and initiate challenging conversations around dying, bereavement care, loss and future care planning. Through this knowledge comes empowerment and confidence to help those they care for.

The Bereavement Support Line ensures no older person has to grieve alone. The aim of the Bereavement Support Line is to provide a grief-trained, free, national service which provides a compassionate but skilled listening ear to bereaved callers (and those supporting them). Experienced call handlers provide psychoeducation on the grieving process and accurate information on local supports, including counselling services, community groups, bereavement support groups).

Who is it aimed at

These linked IHF programmes aim to empower older people to reflect on a life lived and feel secure in planning for, or facing into, end of life, for themselves and for loved ones.

Think Ahead is a universal initiative, applicable for all of us across Ireland. Every one of us will die. Think Ahead provides the tools to ensure our choices, values, and preferences for the end of our lives are respected and discussed openly.

The largest cohort of callers to the Bereavement Support Line are older persons who have lost their life-partner.

The Caru initiative extends this expert support structure specifically to nursing homes, through engaging and educating staff with diverse roles and responsibilities. It encourages the thought process within the organisation that communication around grief and loss is everyone’s responsibility. Caru assists in identifying each staff members role in this process and how and when to signpost to the Bereavement Support Line.

The value of the learning offered by the Caru programme is evidenced by the feedback given by Nursing Home management – “I have never seen staff so motivated and energized coming back from study days before. They are loving it and buzzing to make changes for the benefit of residents, family, and staff.” – Director of Nursing at a Nursing Home.

The positive impact of the Bereavement Support Line is best demonstrated by the sentiments of our callers: It was lovely being able to talk about her, and not worry about your feelings. You have given me tools to help me grieve her.

3 Steps critical to success

1. Supporting culture change – bringing conversations around death, dying and bereavement to the fore for older people across Ireland.
   Developing practical, understandable, support tools, accessible to all.
2. Understanding and responding to the expressed desire of older people for a need to have these conversations (as evidenced in the first National End of Life Survey)
3. Providing high quality training to staff across healthcare and support services to build confidence in facilitating and initiating important conversations.

3 Challenges in Planning / Delivery

1. Ensuring lesser heard voices are represented and supported.
2. Sustaining culture change.
3. Adapting to staff turnover in the sector.

3 Outcomes / Benefits

1. Older people are confident to engage in advance care planning.
2. Staff feel empowered to provide enhanced end of life and bereavement support.
3. No older person is left to grieve alone.