Conference Agenda

Background:

The National End of Life Survey is Ireland’s first national survey to ask bereaved relatives about care provided to a family member or friend in the last months and days of life. The aim of the survey is to learn from people’s experiences of end-of-life care in order to improve services provided both to people who are dying and to their loved ones, as well as to replicate areas of good experience across services and settings.

Methods:

The survey was developed and implemented as part of a public partnership and the findings of the survey will be used to improve care provided at end-of-life. The survey design was based on reviews of comparable national and international surveys and extensive engagement with relevant stakeholders through Delphi Studies, a gap analysis, focus groups and cognitive testing.

The survey questionnaire contained 110 questions, three of which were open-ended and 107 of which were closed-ended. The survey captured experiences of care provided in the last three months of life in hospitals, hospices, nursing homes and the home. Questions regarding the standard of coordination between services and healthcare staff who cared for a person in the last three months of their life were included.

A communications plan was successfully implemented to maximize the survey’s response rate. This included raising awareness of the survey via social media, information webinars and radio advertisements.

Results:

9,446 bereaved relatives were invited to participate in the survey, of whom 4,570 bereaved relatives chose to take part, representing a 48% response rate. Findings indicate that the majority of respondents reported that their family and friends were treated with respect and dignity. However, respondents also reported that the care provided could been coordinated better, both across and within services and settings where they received end-of-life care.

Conclusion:

The survey represents the first standardised national approach to capturing and using the experience of bereaved relatives to improve end-of-life care in Ireland. The findings of the survey will provide healthcare professionals who are planning and delivering end-of-life care with evidenced-based data on what works well and where improvements are needed.

Sue Ryder (SR), the UK's bereavement charity, started its Grief Kind campaign in 2021, after research found that people struggled to support other who had experienced a bereavement. Grief Kind aims to educate the nation to meet grief with warmth, rather than shying away from conversations. SR created a TV ad to ensure grief is something that is normalised and talked about in the UK households. This has been watched by millions of people across the UK and has increased traffic to the website and sign ups to our online bereavement services. In October 2021, we launched our Grief Kind podcast series. In each episode, a SR Ambassador was joined by a celebrity who reflected on their bereavement journey and talked about who helped them through grief. To date, we had over 100,000 downloads. In 2022, SR launched Grief Kind classes, 5 short video tutorials, in which our SR bereavement experts talk viewers through what grief is like and how you can support others who are grieving. Viewed over 37k times, they provide valuable support to organisations and individuals to be Grief Kind. In 2022, SR launched The Empty Chair campaign, an exhibit with a dining table surrounded by 13 empty chairs that encouraged the public to be Grief Kind and offer those who are grieving a chair at their dinner table. The powerful exhibit made a real impact with coverage reach totalling 9.5 million+. It was taken to parliament to engage with MPs to encourage them to sign up to be more Grief Kind. Other public engagement campaigns included installing a red London phone box on Brighton seafront to encourage people to be honest about their feelings of grief and an artistic campaign to show how the senses can impact people’s grief when they least expect it.SR also places regular grief advice and thought leadership pieces in the media. A recent radio day reached over 9 million people. Grief Kind allows for lobbying work with the government, raising the profile of grief and what people need: bereavement leave, service pathways or grief on the school curriculum. Recently, SR has set up Grief Kind spaces across the UK, offering peer-to-peer support groups in cafes, hotels and local community centres. This public health campaign continues to grow and develop and has inspired services worldwide to use the materials and resources. It meets people where they are - shopping, walking by the sea, waiting for a bus, in their home or workplace and tackles issues important to raise and offering guidance.

Background:

Despite the critical role of health literacy in utilizing palliative care, engaging in advance care planning, completing advance directives, limited research exists on the determinants of end-of-life health literacy.

Aim:

This study investigates the association between individuals’ experiences with end-of-life care support to loved ones and end-of-life health literacy among a population-based sample of adults aged 58 and older.

Design: Observational study.

Setting/Participants:

We used data from 1,548 respondents to Wave 8 (2019/2020) of the Survey on Health, Ageing, and Retirement in Europe in Switzerland. The respondents' ability to understand medical jargon, find information, communicate, and make decisions about end-of-life care options was measured with the Subjective End-of-Life Health Literacy Scale. Experiences with end-of-life care support include having made medical decisions as a healthcare proxy, accompanied, or cared for a loved one at the end of life. Associations were estimated using ordinary least squares regressions, controlling for socio-demographic, health, and regional characteristics.

Results:

Respondents who experienced being a healthcare proxy (p<0.001), who accompanied (p<0.001), or who cared for a dying relative or close friend (p<0.001) tended to have higher levels of end-of-life health literacy. These results remained significant when the three variables were simultaneously included in the multivariable model (p<0.001, p<0.001 and p<0.05).

Conclusions:

Our findings suggest that providing end-of-life support to loved ones is associated with higher end-of-life health literacy. Thus, as caregivers gain experience caring for others, targeted interventions could leverage their skills and encourage them to think of engaging in end-of-life planning for themselves.

Background

Culture and spirituality have been identified in previous research studies as important cornerstones of Indigenous palliative care. Māori families want to fulfil their cultural obligations to care for rural Indigenous elders. However, some New Zealand families have lost tribal caregiving knowledge and funeral customs. Can mobile, global, urban Indigenous families bridge the cultural caregiving gap?

Objectives

The aim was to explore our Indigenous urban family’s experience of caring for our rural mother who died in a New Zealand aged residential care hospital after a six week illness. We wanted to explore how whānau (family), and people who return home, fulfil their cultural obligations to care for dying elders. We asked, ‘can urbanised, mobile, Indigenous whānau adapt their customs to care for older people at the end of life and how does this impact bereavement?’

Design

We used auto-ethnographic methods and Kaupapa Māori analysis to explore our urban Māori family’s experience of caring for our older Indigenous mother before and after she died in an urban aged residential care hospital. Following her death, we explored the reclamation of Māori death customs, caregiving roles and bereavement by conducting a reflexive analysis. We drew from pūrākau (stories) shared by family members before, during and after her death, and our written social media communications, to review our collective experiences.

Findings

Our whānau lacked in-depth knowledge of traditional caregiving and funeral customs due to being first generation born mobile, urban Māori. We adapted by drawing from tribal values instilled in us by our mother; we used our collective cultural knowledge to become powerful caregiving allies and communication conduits. Where there were questions, we sought answers from caring health care professionals. Cultural and spiritual support came from experts outside our whānau. Together, we ensured our mother had good palliative care within the health care system. Our unified aroha (love, care, and compassion) supported our mother to die peacefully, with culturally appropriate funeral customs and spiritual care. The experience strengthened our grieving process.

Conclusion

Urbanised Indigenous families can adapt their ancient cultural knowledge to care for dying Indigenous elders who require specific cultural and spiritual support. Cultural customs nurture and protect dying elders, and the reclamation of cultural customs help strengthen families to grieve effectively.

Background: Family carers are a main provider of care at the end of life. It is essential to understand their experiences, the aspects of care that are most important to them, and what makes a difference.

Objective: To understand the care provided to patients near the end of life through the experiences of family carers.

Design: A nationally representative cross-sectional post-bereavement survey.

Methods: The survey was administered via the Office of National Statistics to 3,000 people in England and Wales who had registered the death of a family member 6 to 10 months previously. Respondents were asked to reflect on care their relative received in the last 3 months and last week of life, the circumstances of their relative’s death, their own experiences of care, and bereavement. Free-text responses were analysed using thematic analysis.

Results: 1179 people responded; 1048 (89%) provided free-text comments. Three themes were identified:

1. Novelty of caring and preparedness: Overwhelmingly, a majority of care fell to family and friends. For many, this was their first time caring for someone at the end of life. Few knew what kind of support to expect, and how to find it. They often felt-ill equipped to provide care, in terms of confidence and competence, which led to issues around feeling safe and patient safety.
2. Accessing and navigating healthcare: Obtaining the necessary information and identifying the ‘right’ person to help was hampered by difficulties with navigating different services, poor communication, and long waiting times. Family carers described a mismatch between their expectations and reality. Challenges with accessing support from primary care services was particularly noted. The time consumed by these activities was time they wanted to spend with their dying relative and added to the caring work they were already doing.
3. Being left out of the care loop: Family carers often felt unsupported and unheard by health and care professionals. They wanted to feel involved in decision-making and that their knowledge of the patient was respected by clinicians.

Conclusion: These data highlight aspects of care at the end of life that are important to family carers identified from their own experiences. The unpreparedness of family carers is an important public health issue, as they feel unsupported and let down (especially by community-based services) and unsafe. Clearer information that sets expectations of what is available is imperative.