Water cremation, eco-friendly burials, and digital legacies - how are our expectations of death changing?
Death comes for us all, so why are we so reluctant to talk about it?
In late 2019, The Departure Lounge was launched – an installation designed by The Academy of Medical Sciences and The Liminal Space to encourage the public to talk about death and dying. While death may be something most of us would prefer not to think about, we know that these conversations are important. Consideration, understanding, and planning give people a better chance of having a good death. Through creating this immersive, taboo-busting installation, The Academy of Medical Sciences wanted to facilitate this conversation – and build their understanding of how a good death might look in 2020. This was supported by a forward-looking trends piece, to explore future signals of change.
Ipsos MORI conducted seven workshops in the space with pre-recruited members of the public to explore how different individuals and communities think and talk about death and dying. In total, 56 participants were involved in the workshops.
In addition to the workshops, Ipsos MORI created mini-discussion forms for 30 trained ‘Guides’ staffing the Departure Lounge during opening hours, to help them facilitate discussions with members of the public in the space. These mini-discussion forms broadly mirrored the workshop discussion topics. 64 forms were completed and thematically analysed alongside the findings from the workshops.
Alongside the qualitative research in the Departure Lounge, Ipsos MORI curated information from a range of sources on social changes which relate to how death might be conceived of and experienced now and in the future. This analysis helps to contextualise the stories from the Departure Lounge and the participants in the research.
Key findings from public workshops:
Death is still not discussed and palliative care not well understood.
- Participants tend not to think about death until someone close to them is dying, or when they reach the point where they have children and consider their own mortality. Thinking and talking about death is hard to do, and easier with strangers than family members.
- The public think about the practical aspects of dying e.g. the planning done before a death and the processes after. However, very few people think about what happens in the last days/minutes of life and do not tend to think about the processes involved.
- There are age related differences; younger people (25-35) found the idea of death harder to engage with than older people (65+). This may be because older people are more likely to have had caring responsibilities for children and/or experienced the death of someone close to them.
- There are significant cultural differences, particularly in the Muslim community, who resist talking about death “too early” as recovery is always seen as an option for a person of faith plus, there are elements of personal and family support which are seen as not the remit of healthcare professionals. Rather, palliative care should facilitate the community to deliver services and care rather than replacing it.
- Not everyone has heard of palliative care and even those who have are unsure who is entitled to it, how to organise it, where it can be delivered and what the benefits of it might be. This research suggests that for the public, medical treatment and personal, ‘soft’ care are each seen as quite different things; hospitals delivering medical ‘cures’ and other bodies, charities or friends and family, providing comfort and easing emotional distress.
- All participants welcomed the opportunity to talk about death in the context of the Departure Lounge space and suggested that more spaces like these would be a good thing for wider discussion and greater understanding.
Good end of life care can provide agency, control, choice and flexibility, right up until the moment of death and afford patients the opportunity to express personal values and beliefs.
- While participants were clear about taking control and making practical plans and choices (financial) for their death, they typically had not considered how they would like care to be managed at the end of life. Further research and communication may be needed to identify the kinds of care which are available, and the types of choices which might come up.
- End of life care should support time spent with friends and family; e.g. hospitals providing flexible visiting times and allowing multiple members of the family to spend time with the person dying.
- It was considered crucial that any care provided be flexible to support the expression of personal values and beliefs. Muslim faith participants felt that this should include a reflection that this type of support actually does not fit within the remit of the NHS. In future, the NHS will need to consider how it allows other agencies or community workers to play a part in the end of life, rather than the hospital or medical community wholly “owning” the space of death.
- There should be choice offered as to where the patient can receive treatment and where they can be at the end of their life; there is scope for different research to identify the different kinds of support necessary in hospital, at home, or in a hospice. There may be a need to support families to make the right choices for them (e.g. around the care they will receive and medical decisions such as Do Not Resuscitate orders) and enable them to have as much choice as possible by offering choice at the right moment.
- Dying at home is of particular importance for some faiths and cultures.
Key findings from wider social trends around death:
- Growing demand for flexibility, choice and autonomy in life as in death; if assisted dying becomes legal in the next ten years, this might also affect people’s expectations around death in general.
- Questions around a person’s digital legacy and ownership will become more prominent - our digital selves could create new needs for patients and their families to start to manage people’s affairs well before death, and to curate and clean their ‘data presence’ as well as thinking about the patient’s wishes, money and possessions. Digital Legacy Associations and services are already beginning to emerge, and there may be a need for end of life care to support this process, through a platform of their own, or by connecting patients better with these types of services. Demand for digital access, in general, to resources around end of life planning will continue to grow.
- Ecological concerns are likely to grow, and more people will want a sustainable death –this might influence the kinds of practices and care they ask for before death. Different generations and ethnic or cultural groups might think about sustainability differently; and end of life care may be the space where these discussions play out.
- Increasing personalisation in society, the decline of religion overall, and a move towards comfort with public and personal expression of thought and feelings; all this could mean that people have an expectation of a very tailored and personal death experience. Spaces like the Departure Lounge might become more common; palliative care providers will be able to integrate more with wider discussion forums and support networks. However, in a world where lots of advice is available and voices are not necessarily those of traditional authorities, state healthcare providers will need to make sure people are getting the right information and are well supported in the choices they make.
Implications for policy, practice and future research:
- There is scope for all end of life care settings to offer more joined up care around the emotional and practical aspects of death. Participants in our research would appreciate assistance for the person dying around setting their affairs in order. Participants prioritised the opportunity to ‘make their wishes known’. Therefore, it may be useful to put in place access to legal advice, financial advice, or other mediation and support, or for end of life care to link better with agencies which provide this. This might help both family and healthcare professionals navigate difficult decision processes, e.g. choosing whether or not to refuse further interventions. While these linkages are not necessarily perceived to be within the scope of traditional healthcare, they reflect the ways death might be changing in line with social trends for sustainability, flexibility, and personalised experiences.
- It may also be important for end of life care settings to help patients and carers navigate the different advice they get from a range of wider sources and sift verified and accurate information from inaccurate or harmful advice.
- There could be scope for research or communications to help identify and communicate how the psychological and emotional aspects of dying relate to the physical aspects. Further research could investigate how healthcare professionals can best balance the needs of the patient for certain types of care, and the needs of the family to be involved in decisions about how this care is delivered.
- There is a need for greater communication with the public, so that people can learn about the realities of death, especially the likelihood of dying from dementia; that dying is a process; that palliative care is a way of helping the whole patient, and where the opportunities are for the medical world to support families and carers. Future research and policy development can build on the important work already done in this area, for example, information provision and public engagement activities from Dying Matters and other organisations.
- It is considered crucial that any provision of pastoral or emotional support be provided in a way that reflects and enables cultural and religious practices and beliefs.
Polling: Ipsos MORI interviewed a representative quota sample of 966 British adults aged 18+ between 5 and 14 April 2019. Interviews were carried out face-to-face using Ipsos' “capibus” omnibus survey. Data is weighted to match the profile of the population. Full data tables are available from the Ipsos MORI website. In line with the principles of informed consent, participants were given the opportunity not to answer questions on this sensitive topic. A screener question was asked ahead of the module giving some background and asking if participants were happy to answer questions on this topic. Those who were not (35% of the whole sample) were not asked any. In total, 612 participants answered the questions in this section. Those who chose not to tended to be older, in social grades C2 and DE, and with fewer formal educational qualifications.
Qualitative research: 7 mixed-gender workshops took place in the Departure Lounge installation; two with Muslims aged 25-70 (one male, one female), one with elderly people with and without health conditions, one with young pre-family, and two with “squeezed generation”, those caring for both children and elders, split out ABC and CDE. Training of guides given to complete 64 self-completion discussion tasks which were analysed along with qualitative data.
Trends research: sources included Google Trends, our social media intelligence suite, Synthesio, brief literature review of various books recently released on this topic, online sources published by newspapers, academics, charities and organisations.
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