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.

scholarly journals Dying well with dementia: Qualitative examination of end-of-life care

2011 ◽  
Vol 199 (5) ◽  
pp. 417-422 ◽  
Author(s):  
Vanessa Lawrence ◽  
Kritika Samsi ◽  
Joanna Murray ◽  
Danielle Harari ◽  
Sube Banerjee
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Comparison Method ◽  
Life Care ◽  
Care Needs ◽  
People With Dementia ◽  
The Uk ◽  
Bereaved Family ◽  
Cognitively Intact

BackgroundPeople with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.AimsTo define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.MethodIn-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.ResultsThe data highlighted the challenge and imperative of ‘dementia-proofing’ end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.ConclusionsThe quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.

End-of-Life Care for Older Adults in ICUs

2002 ◽  
Vol 20 (1) ◽  
pp. 181-229 ◽  
Author(s):  
JUDITH G. BAGGS
Keyword(s):  
Older Adults ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Support ◽  
Symptom Relief ◽  
Life Support Care ◽  
Life Care ◽  
Care Providers ◽  
Care Needs

This review was undertaken to present and critique the most recent (1990-2000) empirical evidence about end-of-life care for older adult patients in ICUs, their families, and care providers. The studies (including descriptive, correlational, longitudinal, and intervention) were found using a combination of these terms: (a) intensive care (units) or critical care (units), and (b) critical illness, critically ill patients, terminally ill, terminal care, life support care, or palliative care. The computerized databases searched were CINAHL and MEDLINE. Only published studies of persons 44 years of age or older, written in English, and conducted in the U.S. or Canada were included. Research was not limited to studies conducted by or written by nurses. Excluded were articles focused on physiology, for example, studies of treatment for specific conditions, and articles focused on predictors of ICU outcomes.Findings and Implications for ResearchThere is little research specifically focused on end-of-life care of older adults in ICUs. Most research has been retrospective, and most has involved either providers or patients and families but not both.Research is needed in many areas. The mechanism by which age affects choice of care needs further exploration. The experience of patients, families, and providers and how those experiences change with interventions needs investigation. The influence of the ICU culture, variation in decisions made and reasons for that variation, the decision-making process, and variations in care, all require further attention. Four domains were identified for research needed to improve care for older adults at the end of life in intensive care: symptom relief, communication improvement, psychological support, and relationship improvement. No one has assessed whether the ICU is a good place for transition to palliation to occur, or whether it would be better to transfer patients to another type of unit.

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 When “Good Enough” Isn’t Good Enough: Interdisciplinary Perspectives on Caring for Adults Using Substances at the End of Life

2021 ◽  
Author(s):  
Lorna Templeton ◽  
Sarah Galvani ◽  
Marian Peacock
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Structured Interview ◽  
Life Care ◽  
Snowball Sampling ◽  
Policy And Practice ◽  
Template Analysis ◽  
Health And Social Care ◽  
The Uk ◽  
Key Terms

AbstractThis paper draws on data from one strand of a six-strand, exploratory study on end of life care for adults using substances (AUS). It presents data from the key informant (KI) strand of the study that aimed to identify models of practice in the UK. Participant recruitment was purposive and used snowball sampling to recruit KIs from a range of health and social care, policy and practice backgrounds. Data were collected in 2016–2017 from 20 KIs using a semi-structured interview approach. The data were analysed using template analysis as discussed by King (2012). This paper focusses on two of seven resulting themes, namely “Definitions and perceptions of key terms” in end of life care and substance use sectors, and “Service commissioning and delivery.” The KIs demonstrated dedicated individual practice, but were critical of the systemic failure to provide adequate direction and resources to support people using substances at the end of their lives.

scholarly journals We Want More Than Life-Sustaining Treatment during End-of-Life Care: Focus-Group Interviews

2021 ◽  
Vol 18 (9) ◽  
pp. 4415
Author(s):  
Mirinae Kim ◽  
Minju Kim
Keyword(s):  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Treatment Needs ◽  
Focus Group Interviews ◽  
Care Needs ◽  
Basic Care ◽  
Life Sustaining Treatment ◽  
Group Interviews

We qualitatively investigated end-of-life care needs. Data were collected via focus-group interviews with three groups: young adults, middle-aged adults, and older adults. The key question was, “What kind of care would you like to receive at the end of life?” Interview data were transcribed and analyzed using content analysis. End-of-life care needs were classified into six categories: life-sustaining treatment needs, physical care needs, emotional care needs, environmental needs, needs for respect, and needs for preparation for death. Because the Korean culture is family-oriented and talking about death is taboo, Korean patients at the end of their life do not make decisions about life-sustaining treatment or actively prepare for death. Therefore, to provide proper end-of-life care, conversations and shared decision-making among patients and their families are crucial. Further, we must respect patients’ dignity and help them achieve a good death by understanding patients’ basic care preferences. Future research should continue examining end-of-life care needs that reflect the social and cultural context of Korea to inform instrument development.

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 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

scholarly journals Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability

2018 ◽  
Vol 24 (6) ◽  
pp. 366-382 ◽  
Author(s):  
Ruth Northway ◽  
Stuart Todd ◽  
Katherine Hunt ◽  
Paula Hopes ◽  
Rachel Morgan ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
End Of Life ◽  
Nursing Care ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Nursing Support ◽  
Respiratory Problems ◽  
The Uk ◽  
The Impact

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

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