Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

Abstract Background Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. Methods An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. Results 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. Conclusions People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people’s end of life wishes and preferences.

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Before The 2020 Pandemic: An Observational Study Exploring Public Knowledge, Attitudes, Plans, and Preferences Towards Death and End of Life Care in Wales

10.21203/rs.3.rs-141355/v1 ◽

2021 ◽

Author(s):

Ishrat Islam ◽

Annmarie Nelson ◽

Mirella Longo ◽

Anthony Byrne

Keyword(s):

Social Media ◽

End Of Life ◽

Health Professionals ◽

End Of Life Care ◽

Public Attitudes ◽

Death And Dying ◽

Service Utilisation ◽

Life Care ◽

Manner Of Death ◽

Attitudes Towards Death

Abstract Background: Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales.Methods: An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis.Results: 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking bout death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals can initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. Conclusions: People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation - drivers to support health professionals and people towards shared decisions which align with people’s end of life wishes and preferences.

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Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Health Services and Delivery Research ◽

10.3310/hsdr03310 ◽

2015 ◽

Vol 3 (31) ◽

pp. 1-138 ◽

Cited By ~ 10

Author(s):

Kristian Pollock ◽

Eleanor Wilson

Keyword(s):

Qualitative Study ◽

End Of Life ◽

Advance Care Planning ◽

Health Professionals ◽

End Of Life Care ◽

Community Care ◽

Death And Dying ◽

Care Planning ◽

Life Care ◽

Advance Care

BackgroundAdvance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic.AimTo investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life.Design and data collectionQualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total.SettingGeneral practices and community care settings in the East Midlands of England.FindingsThe study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare.ConclusionsAdvance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity.Future workAttention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

Innovation in Aging ◽

10.1093/geroni/igaa057.1345 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 417-417

Author(s):

Hyo Jung Lee ◽

Jacobbina Jin Wen Ng

Keyword(s):

Decision Making ◽

End Of Life ◽

Adult Children ◽

End Of Life Care ◽

Death And Dying ◽

Family Members ◽

Life Care ◽

Joint Decision ◽

Aging Parents ◽

Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

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“Is there no Balm in Gilead?”: Health, Illness, Death, and Dying in the Hebrew Bible and Today

Interpretation A Journal of Bible and Theology ◽

10.1177/00209643211012116 ◽

2021 ◽

Vol 75 (3) ◽

pp. 196-206

Author(s):

Joel S. Kaminsky

Keyword(s):

End Of Life ◽

Hebrew Bible ◽

End Of Life Care ◽

Death And Dying ◽

Life Care ◽

The U.S ◽

Conceptual Resources

This essay argues that the Hebrew Bible contains conceptual resources that can contribute to and enrich the ongoing discussions surrounding healthcare in the U.S. and in other modern Western societies. These biblical ideas may help us reframe our understandings of sickness and health, something urgently needed if we wish individuals and their families to have less medically invasive and less alienating experiences of illness, most especially during end of life care.

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27 Understanding public attitudes: a crucial component for developing palliative care services

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2018-mariecurie.27 ◽

2018 ◽

Vol 8 (3) ◽

pp. 370.1-370 ◽

Cited By ~ 1

Author(s):

Ishrat Islam ◽

Anthony Byrne ◽

Annmarie Nelson

Keyword(s):

Palliative Care ◽

End Of Life ◽

Social Services ◽

End Of Life Care ◽

Online Survey ◽

Public Attitudes ◽

List Type ◽

Life Care ◽

Services Research ◽

Survey Tool

IntroductionA major challenge in developing new models of palliative care is to identify the current needs of the public patients and carer (Dixon 2015). There is a lack of evidence on people’s attitudes towards end of life care (EoLC) in Wales.AimTo increase understanding of people’s feelings views knowledge and preferences around EoLC.MethodAn online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis.Results2210 people (Age: Mean +SD; 55+14 years) participated in the survey 43% of those were members of the general public 29% were patients/carers and 23% were health professionals. 49% of respondents thought that available palliative care was inadequate and 92% believed that end of life care for dying people should have equal priority for the NHS. 95% of respondents thought that expressing preferences around EoLC in advance was important but only 13% had done this in practice and 60% did not know how to plan their EoLC. However the top three needs in EoLC were identified as having a trained carer (84%) access to other professionals (59%) and emergency care (44%). The top three preferences for EoLC were being surrounded by loved ones (62%) maintaining dignity (55%) and a feeling of peace (40%). Just 24% respondents would chose to be at home while receiving EoLC.ConclusionsUnderstanding public attitudes is essential to understanding changing contexts of care. Developing a need-based palliative care model enhances an effective service delivery.Reference. Dixon J, et al. Equity in the provision of palliative care in the UK: Review of evidence2015;pg. 1–145. London: Personal Social Services Research Unit. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf

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Managing End-of-Life Care

Adult Nursing Practice ◽

10.1093/oso/9780199697410.003.0029 ◽

2012 ◽

Author(s):

John W. Albarran ◽

Marika Hills

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Care Delivery ◽

Symptom Relief ◽

Death And Dying ◽

Past Century ◽

Life Care ◽

Care Needs ◽

Definition Of ◽

The Uk

This chapter addresses the fundamental nursing role of managing end-of-life care. Death is as fundamental a part of life as living, and while caring for a dying patient and their family is demanding, complex, and emotionally exhausting, it can also be a gratifying and privileged experience for nurses. Specifically, nurses have a centre-stage role in leading and informing care delivery at the end of life. Care will typically embrace assessing the needs of the patient and family, providing symptom relief and comfort care, and providing cultural and spiritual support. Additionally, caring functions should also extend following death to caring for the deceased in a dignified manner and supporting the newly bereaved, demonstrating genuine concern, compassion, and effective communication skills (Hills and Albarran, 2010a; Maben et al., 2010). To examine the key themes and challenges of practice, it is important to understand the political, professional and societal influences, and contextual nature of death and dying in the UK. At present, there is neither a clear nor universally accepted definition of end-of-life care, but it is generally understood to be the care of a person who is identified as having failing health and who is in a progressive state of decline (Shipman et al., 2008). Establishing the last phase of a patient’s life can be a difficult and complex process, and this might occur:…● after the diagnosis of a life-limiting condition; ● during the transition or deterioration of a chronic disease illness; ● when there is an increasing frailty combined with greater dependence on care provision, particularly in the older adult; ● following a sudden infective episode, cardiac event, or a life-threatening accident….The last phase of end-of-life care is referred to as the dying phase. Consideration of the end-of-life care needs of people with chronic terminal conditions should begin at diagnosis, and must embrace after-death care and family support. Over the past century, progress and advancement in disease management, together with improvements in living standards, have resulted in changes to the national death profile, with currently two-thirds of the 0.5 million annual deaths in the UK occurring in people over 75 years of age.

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Experiences of a Group of Senior Nursing Students with End of Life Care and Death in Turkey

OMEGA - Journal of Death and Dying ◽

10.1177/0030222820961232 ◽

2020 ◽

pp. 003022282096123

Author(s):

Deniz Sanli ◽

Fatma Iltus

Keyword(s):

Nursing Students ◽

End Of Life ◽

End Of Life Care ◽

Quality Care ◽

Death And Dying ◽

Life Care ◽

Death Attitudes ◽

Positive Attitudes ◽

Dying Patients ◽

And Behaviors

Nursing students may feel unprepared to manage the care of dying individuals and may experience anxiety and fear related to death and dying. Preparing nursing students for this situation can help them provide quality care to dying patients. This study aimed to examine the end-of-life care values and behaviors and death attitudes of senior nursing students. In examining these variables, the Values and Behaviors of Intensive Care Nurses for End-of-Life Instrument and the Death Attitude Profile-Revised Scale were used. It was found that the students developed positive attitudes and behavior towards end-of-life care, and that they believed death to be a natural part of life and there is life after death. Students who felt that the information they received during their education was partially sufficient were more likely to have negative death attitudes. It can be recommended that teaching strategies in the education of the nursing students be developed.

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Palliative care for community patients diagnosed with dementia: a systematic review

British Journal of Community Nursing ◽

10.12968/bjcn.2019.24.12.570 ◽

2019 ◽

Vol 24 (12) ◽

pp. 570-575

Author(s):

Cathryn Smith ◽

Gina Newbury

Keyword(s):

Systematic Review ◽

Palliative Care ◽

End Of Life ◽

Health Professionals ◽

End Of Life Care ◽

Good Practice ◽

Community Setting ◽

Life Care ◽

Staff Support ◽

The Uk

Despite many efforts made by health organisations to deliver effective end-of-life care to patients with dementia, research indicates that palliative care is predominantly aimed at patients with terminal cancer, and that patients with dementia face challenges in accessing end-of-life care. This article explores the views of health professionals on providing palliative care to those patients diagnosed with dementia within the community setting. A systematic review of seven qualitative studies was performed to identify the best available evidence. The findings show that effective palliative care for patients with dementia continues being affected by many barriers and challenges. Good practice seems to be inconsistent and fragmented throughout the UK and European countries, and many health professionals are faced with difficulties associated with services and financial implications, training and education, staff support, communication, family support and dementia care.

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