scholarly journals Timely community palliative and end-of-life care: a realist synthesis

2021 ◽  
pp. bmjspcare-2021-003066
Author(s):  
Mila Petrova ◽  
Geoff Wong ◽  
Isla Kuhn ◽  
Ian Wellwood ◽  
Stephen Barclay
Keyword(s):  
Primary Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Death And Dying ◽  
Unintended Consequences ◽  
Realist Synthesis ◽  
Current Evidence ◽  
Life Care ◽  
Text Documents ◽  
Timely Initiation

BackgroundCommunity-based and home-based palliative and end-of-life care (PEoLC) services, often underpinned by primary care provision, are becoming increasingly popular. One of the key challenges associated with them is their timely initiation. The latter requires an accurate enough prediction of how close to death a patient is.MethodsUsing ‘realist synthesis’ tools, this review sought to develop explanations of how primary care and community PEoLC programmes generate their outcomes, with the explanations presented as context–mechanism–outcome configurations. Medline, Embase, CINAHL, PsycINFO, Web of Science, ASSIA, Sociological Abstracts and SCIE Social Care Online were originally searched. A multistage process of focusing the review was employed, with timely identification of the EoL stage and timely initiation of associated services representing the final review focus. Synthesised sources included 21 full-text documents and 324 coded abstracts, with 253 ‘core contents’ abstracts generating >800 codes.ResultsNumerous PEoLC policies and programmes are embedded in a framework of Preparation and Planning for Death and Dying, with identification of the dying stage setting in motion key systems and services. This is challenged by: (1) accumulated evidence demonstrating low accuracy of prognostic judgements; (2) many individuals’ orientation towards Living and Hope; (3) expanding grey zones between palliative and curative care; (4) the complexity of referral decisions; (5) the loss of pertinent information in hierarchical relationships and (6) the ambiguous value of having ‘more time’.ConclusionPrioritising temporal criteria in initiating PEoLC services is not sufficiently supported by current evidence and can have significant unintended consequences.PROSPERO registration numberCRD42018097218.

Important aspects of end-of-life care. Survey of patients visiting the primary care office

2011 ◽  
Vol 152 (27) ◽  
pp. 1082-1092 ◽  
Author(s):  
Ágnes Csikós ◽  
Lajos Nagy ◽  
Csilla Busa ◽  
János Kállai
Keyword(s):  
Primary Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Psychosocial Support ◽  
Death And Dying ◽  
Life Care ◽  
Truth Telling ◽  
Convenience Sample ◽  
To Receive

Introduction: Death and dying are still taboo topics in Hungary. The care of the dying, the adequate relief of their symptoms and the psychosocial support of both patients and their caregivers are not yet well addressed. Aims: Authors obtained information about the feelings and thoughts of patients on death and dying, and about their expectations for end-of-life care. Methods: Mailed questionnaire was send to a convenience sample of 29 adult primary care offices where a total of 845 unselected patients completed the questionnaire. Results: More than two thirds (69%) of respondents would like to receive end of life care in their home. Only 19% of respondents would prefer to die in a hospital. Respondents’ greatest fear was to lose their autonomy (55%). The second most noted concern was fear from pain (38%). According to 93% of the participants, truth telling is very important in the event of terminal illness. Conclusions: Hungarian patients prefer to receive end of life care in their home. Our data support the need for improvement in three primary areas, physician communication skills, pain and symptom management, and expansion of home hospice care. Orv. Hetil., 2011, 152, 1082–1092.

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

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.

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

2021 ◽  
Vol 20 (1) ◽  
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 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.

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

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.

scholarly journals Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Grace Warner ◽  
Lisa Garland Baird ◽  
Brendan McCormack ◽  
Robin Urquhart ◽  
Beverley Lawson ◽  
...  
Keyword(s):  
Primary Care ◽  
Case Management ◽  
End Of Life ◽  
End Of Life Care ◽  
Realist Synthesis ◽  
Multi Level ◽  
Care Practices ◽  
Primary Care Practitioners ◽  
Management Functions ◽  
Primary Care Practices

Abstract Background An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life. A realist synthesis was conducted to understand how multi-level contexts affect case management functions related to initiating end-of-life conversations, assessing patient and caregiver needs, and patient/family centred planning in primary care practices to improve outcomes. The synthesis also explored how these functions aligned with critical community resources identified by patients/families dealing with end-of-life. Methods A realist synthesis is theory driven and iterative, involving the investigation of proposed program theories of how particular contexts catalyze mechanisms (program resources and individual reactions to resources) to generate improved outcomes. To assess whether program theories were supported and plausible, two librarian-assisted and several researcher-initiated purposive searches of the literature were conducted, then extracted data were analyzed and synthesized. To assess relevancy, health system partners and family advisors informed the review process. Results Twenty-eight articles were identified as being relevant and evidence was consolidated into two final program theories: 1) Making end-of-life discussions comfortable, and 2) Creating plans that reflect needs and values. Theories were explored in depth to assess the effect of multi-level contexts on primary care practices implementing tools or frameworks, strategies for improving end-of-life communications, or facilitators that could improve advance care planning by primary care practitioners. Conclusions Primary care practitioners’ use of tools to assess patients/families’ needs facilitated discussions and planning for end-of-life issues without specifically discussing death. Also, receiving training on how to better communicate increased practitioner confidence for initiating end-of-life discussions. Practitioner attitudes toward death and prior education or training in end-of-life care affected their ability to initiate end-of-life conversations and plan with patients/families. Recognizing and seizing opportunities when patients are aware of the need to plan for their end-of-life care, such as in contexts when patients experience transitions can increase readiness for end-of-life discussions and planning. Ultimately conversations and planning can improve patients/families’ outcomes.

scholarly journals Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Lucy Ellen Selman ◽  
Lisa Jane Brighton ◽  
Vicky Robinson ◽  
Rob George ◽  
Shaheen A. Khan ◽  
...  
Keyword(s):  
Primary Care ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
Educational Needs ◽  
Learning Preferences ◽  
Life Care ◽  
Focus Group Study ◽  
The Uk

Managing End-of-Life Care

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.

What are the challenges for nurses when providing end-of-life care in intensive care units?

2019 ◽  
Vol 28 (16) ◽  
pp. 1047-1052 ◽  
Author(s):  
Ian Griffiths
Keyword(s):  
Intensive Care ◽  
End Of Life ◽  
Intensive Care Units ◽  
End Of Life Care ◽  
Evidence Base ◽  
Current Evidence ◽  
Life Care ◽  
Current Evidence Base ◽  
Review Question ◽  
The Subject

Aim: this literature review aimed to explore qualitative studies in which nurses discussed the challenges they face when delivering end-of-life care in intensive care units (ICUs). Analysis and discussion of the studies' findings aimed to contribute to the current evidence base surrounding the subject. Method: a systematic search of academic databases was conducted to source relevant studies. An inductive process using grounded theory was undertaken to elicit suitable themes to address the review question. Findings: six relevant studies were identified with four main themes emerging from analysis. The themes were a lack of nurse involvement in end-of-life care decision-making, a lack of nursing knowledge in providing end-of-life care, the dilemma of prioritising care between the patient and family, and the nature of providing end-of-life care within an ICU environment. Conclusion: the provision of end-of-life care in ICUs requires nurses to be involved in interdisciplinary communication. ICU-specific end-of-life care education, training and guidelines need to be implemented to ensure patients receive high-quality, patient-centred care.

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

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.

scholarly journals The emotional labour of quality improvement work in end of life care: a qualitative study of Patient and Family Centred Care (PFCC) in England

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Richard Boulton ◽  
Annette Boaz
Keyword(s):  
Health Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Patient Experience ◽  
End Of Life Care ◽  
Care Service ◽  
Unintended Consequences ◽  
Life Care ◽  
Emotional Labour ◽  
Service Staff

Abstract Background There is a growing emphasis on understanding patient experience in order to inform efforts to support improvement. This paper reports findings from an implementation study of an evidence-based intervention called Patient and Family Centred Care (PFCC) designed to tap into patient experiences as a basis for improvement. In this study the PFCC intervention was spread to a new service area (end of life care) and delivered at scale in England. The findings presented here focus specifically on one key aspect of the intervention: staff shadowing of patients, and the experiences of staff carrying out shadowing for the purposes of service improvements. Methods The study methods were ethnographic observations of key events, semi-structured interviews with members of participating teams and the programme implementation support team and managers, and a review of the documents used in the set up and running of the programme. Results One of the key strengths of the PFCC approach is to encourage staff through shadowing to engage with patient experience of services. Many staff described the process of shadowing as a transformative experience that alerted them to immediate areas where their services could be improved. However, engaging with patient experience of end of life care services also had unintended consequences for some staff in the form of emotional labour. Furthermore, we observed difficulties encountered by staff that are not accounted for in the existing PFCC literature relating to how care service structures may unevenly distribute the amount of ‘emotional labour’ that staff members need to invest in implementing the programme. Conclusions Connecting with patient experience is a crucial aspect of a number of quality improvement interventions that aim to help staff to engage with the lived experience of their services and reconnect their motivations for working in the health care system. However, there may be unintended consequences for health care service staff, particularly in sensitive areas of service delivery such as end of life care. The ‘emotional labour’ for staff of engaging in quality improvement work informed by patient experience should be considered in planning and supporting patient experience led quality improvement.

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