We used an online survey to study people’s knowledge, attitudes, plans, and preferences towards death and EoLC in Wales. A total of 2,210 participants took part in the study. The participants contributed 2,610 pieces of narratives across eight open-ended questions.
Participants especially feared specific aspects linked to the process of dying such as the loss of independence (84%), the manner of death (narratives), and having to leave their beloved behind (54%).
In terms of service provision and personal EoLC preferences, participants favoured aspects of service provisions such as timely access to care (84%) and being surrounded by family and friends (62%). Being at home was less of a priority (24%).
Only 50% of the sample were aware of ACP. ACP was perceived as a means to increase the autonomy of choice around EoLC and to avoid unwanted treatment (narratives). However, this depended on the presence of standard procedures, support for the execution of plans, and the ability to revisit plans (narratives). These factors might explain why a large proportion of respondents intended to arrange EoLC plans but, except for organ donation, only a minority had formalized any EoLC plans.
Communication around death and dying were hindered by the taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort. Respondents advocated normalising talking about death and dying - a cultural shift encouraged by demystifying death with a positive approach. Health professionals can initiate and support this conversation, but communication skills and manageable workload pressure were crucial for facilitating this.
Participants sought a public health approach to breaking the stigma around death and dying and endorsed the use of four channels to achieve this: a) using social media and other public platforms, b) providing formal education, c) developing formal and legal actions, and d) improving signposting and access to information.
The study findings provide robust estimates to corroborate previous research in terms of people’s fears around the process of dying(11–13) and reinforces the evidence(28) that the preferred place of death is associated with specific environmental factors. Again, similarly to the Dying Matter Coalition survey(2), nearly 90% of the respondents felt comfortable discussing issues around death, but the percentage of people who had started any discussions with health care professionals remains small (a change from 2–3%). However, there was an increase from 7.5–16% in the number of people formally expressing future health care wishes. More recently, a mixed-method study(29) explored attitude to discussion death and dying amongst adults with advanced or terminal condition. For this study population, death was far from a taboo; instead, they found talking about death and dying “liberating”. Participants sought honest and open conversations about their choices and, similarly to our study, they expressed a need for more support to achieve what they define as a good death; including the choice of a safeguarded assisted dying law alongside good palliative care. This could in part explain why only 12% of the respondents had completed an Advance Decision to Refuse Treatment. The uptake of ACP remains low outside the UK as well. Yadav and colleagues(30) conducted a systematic review of the prevalence of Advance Directives (AD) among US adults and found that only one in three adults had carried out some form of AD. A similar percentage applied to residents of long-term care facilities across European countries(31).
Barriers to a higher uptake of ACP include scepticism about wishes being respected(32), social grade(33), communication skills and competency(32, 34–36). Abel and colleagues (2020) sustain that a shift of focus from medical treatments to health and wellbeing would facilitate an early engagement and ease this difficult conversation across all care settings(37).
Participants seek a public health approach to normalise talking about death(3–5). An effective public health programme should include an educational component, a community component, and government/service role(38). Initiatives such as Dying Matters in Wales are actively working towards this. In Wales, a Clinical Lead and ACP facilitators at the Health Boards and charities such as MacMillan, Marie Curie, and Byw Nawr work towards raising public awareness of ACP in the community and educating facilitators and health care professionals. In 2015, the UK statistics indicated that a child loses a parent on average every 22 minutes(39). Bereavement can lead to social isolation and further consequences such as alcoholism, depression, and antisocial behaviour. This loss of human capital is, at least in part, due to unacknowledged loss. In some countries, death education is part of the school curricula(40). In the UK, this is currently limited to programs of support for bereaved young people(39).
As it is the case for other online survey-based studies, this study has strengths and limitations. The large sample allowed for robust estimates and rich narratives. An extensive literature review, questionnaire piloting, and PPI support secured the questionnaire content and face validity. The qualitative data provided additional dimensions and validations of the numerical findings. The survey was online and, in 2018, around 10% of the adult population of Wales reported not using the internet. Male, singles, and people with a lower educational background were under-represented, future research should consider oversampling from these groups. However, given the high percentages of participants agreeing to the attitudinal answers, it is unlikely that this seriously biased the estimates.
The impact of COVID-19
COVID-19 has severely altered the health environment and transformed the delivery of care. Health professionals might be unable to rely on customary norms to create rapport and continuity of care: Consultations occur through screens and protective equipment, communication with families and friends is done remotely, and difficult conversations might have to take place in emergency contexts, shortly after meeting the patient, because disease progression is such that the patient needs to be diverted to the EoLC pathway. However, today’s technology can support this consultation mode(41). In Wales, the NHS Wales Video Consulting (VC) Service is a video consultation service(42) rolled out by Welsh Government to offer video consultations where possible, the system has currently covered 90% of GP practices in Wales.
The daily updates on mortality counts and rates are crucial in highlighting the public health message and have instilled a deep awareness around death and dying. However, six months into the COVID-19 pandemic, mass-media headlines continue to focus on these statistics only. There is now a need to re-direct the conversation and pay attention to the process of dying and how we make sense of mortality.
In the UK and across the world, the pandemic has inevitably propelled Palliative Care (PC) centre stage(21) and turned it into a driver of best practice(43) to ensure access to EoLC is in respect of patients’ priorities and preferences. The PC philosophy is becoming the vehicle to safeguarding patients’ autonomy and avoiding decisions being driven by the fear of the pandemic(44). However, this is only possible if PC becomes more visible, starting with national (and international) guidelines and policy documents clearly embedding the contribution of PC when treatments no longer aim to cure and shift to comfort.
COVID-19 has also created an unprecedented number of fast-tracked research, which highlights the need to test and share examples of best practice as soon as they become available. A follow-up survey is underway to remedy some of the sample bias(45, 46) and to gauge real-time data about how COVID-19 has affected people’s attitudes towards and engagement with EoLC planning.