Improving the End-of-Life Experience of Elderly Patients and Their Families: Policy and Practice Fall Short of Providing Comfort and Support

The majority of Indigenous peoples on Turtle Island (North America) now live in urban settlements, and likely may die in urban spaces. Based upon academic and grey literature searches in 2018 of Indigenous death, dying, grieving, and palliative care in Canada, there is a near absence of information exploring this pivotal life event in the urban context. The diversity of urban Indigenous identities, lived experiences, and degree of connection to Indigenous culture highlights the complexity of the interconnection of death, Indigeneity, and urbanity. Fortunately, signs exist of Indigenous cultural and ceremonial revitalization in urban spaces, and the end of life offers an auspicious opportunity for healing from the intergenerational trauma arising from colonization. Despite the plurality of cultures in urban settlements on Turtle Island, colonization informs and dominates most systems, including the framing of death and dying as a medical event. However, in my experience, death is more about culture and community. Reconciliation for urban Indigenous communities involves negotiating this challenging paradox between colonial and Indigenous worldviews. Rather than developing new strategies, I posit that existing knowledge – the Medicine Wheel and the Two Row Wampum – offer a vision for restoring respect, balance, and spirit to the end-of-life journey. The Medicine Wheel and the Two Row Wampum teachings offer an Indigenous theoretical framework to consider the complex space created by the interconnection of death, Indigeneity, and urbanity and offers a strength-based approach to guide future end-of-life research, policy, and practice to improve the end-of-life experience for urban Indigenous communities.

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Faculty Opinions recommendation of End-of-life preferences of elderly patients with chronic heart failure.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.13436983.14811087 ◽

2012 ◽

Author(s):

Marco Metra ◽

Luca Bettari

Keyword(s):

Heart Failure ◽

Chronic Heart Failure ◽

Elderly Patients ◽

End Of Life

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The implications of the Mental Capacity Act (MCA) 2005 for advance care planning and decision making

10.1093/oso/9780198802136.003.0011 ◽

2018 ◽

Author(s):

Simon Chapman ◽

Ben Lobo

Keyword(s):

Decision Making ◽

End Of Life ◽

Advance Care Planning ◽

Care Planning ◽

Best Interest ◽

Policy And Practice ◽

Advance Care ◽

Current Context ◽

Mental Capacity Act ◽

End Of Life Decision

This chapter provides an overview of the MCA’s impact on end-of-life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to advance care planning (ACP) and end of life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

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‘Living in parallel worlds’ – bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study

Palliative Medicine ◽

10.1177/02692163211001719 ◽

2021 ◽

pp. 026921632110017

Author(s):

Cherith J Semple ◽

Eilís McCaughan ◽

Esther R Beck ◽

Jeffrey R Hanna

Keyword(s):

End Of Life ◽

Psychosocial Adjustment ◽

Family Life ◽

Life Experience ◽

Qualitative Interviews ◽

Later Life ◽

Support Service ◽

Dependent Children ◽

Bereaved Parents ◽

Death Of A Parent

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents’ experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in ‘parallel worlds’ throughout the end of life period. In one world, ‘living in the moment’, cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as ‘intermitted glimpses that death is approaching’, shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly ‘falling off the cliff’; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

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

International Journal of Mental Health and Addiction ◽

10.1007/s11469-020-00445-3 ◽

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.

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Improving the End-of-Life Experience for Family Members of Cancer Patients Who Die on the Oncology Ward: The Three Wishes Project (SCI922)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2021.01.085 ◽

2021 ◽

Vol 61 (3) ◽

pp. 681-682

Author(s):

Gwenyth Day ◽

Marilyn Swinton ◽

Danielle Bear ◽

Peter Phung ◽

Allegra Bell ◽

...

Keyword(s):

End Of Life ◽

Cancer Patients ◽

Life Experience ◽

Family Members ◽

Oncology Ward

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Pediatric End of Life Care: Impact of Islamic Faith

Western Journal of Nursing Research ◽

10.1177/01939459211016503 ◽

2021 ◽

pp. 019394592110165

Author(s):

Shahad A. Hafez ◽

Julia A. Snethen ◽

Emmanuel Ngui ◽

Julie Ellis ◽

Murad Taani

Keyword(s):

Saudi Arabia ◽

End Of Life ◽

End Of Life Care ◽

Life Experience ◽

Primary Caregivers ◽

Positive Influence ◽

Future Research ◽

Life Care ◽

Beliefs And Practices ◽

Education Practice

Studies investigating children and families’ experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers’ experiences. Islamic beliefs and practices helped support participants through their child’s end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.

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Hospitalization burden and end-of-life (EOL) care in elderly patients with glioblastoma (GBM).

Journal of Clinical Oncology ◽

10.1200/jco.2020.39.28_suppl.31 ◽

2021 ◽

Vol 39 (28_suppl) ◽

pp. 31-31

Author(s):

Laura Donovan ◽

Donna Buono ◽

Melissa Kate Accordino ◽

Jason Dennis Wright ◽

Andrew B. Lassman ◽

...

Keyword(s):

Socioeconomic Status ◽

Palliative Care ◽

Elderly Patients ◽

Marital Status ◽

End Of Life ◽

Remaining Life ◽

Care Services ◽

Palliative Care Services ◽

Race Ethnicity ◽

Eol Care

31 Background: GBM is associated with a poor prognosis and early death in elderly patients. Prior studies have demonstrated a high burden of hospitalization in this population. We sought to evaluate and examine trends in hospitalizations and EOL care in GBM survivors. Methods: Using SEER-Medicare linked data, we performed a retrospective observational cohort study of patients aged ≥ 65 years diagnosed with GBM from 2005-2017 who lived at least 6 months from the time of diagnosis. Aggressive EOL care was defined as: chemotherapy or radiotherapy within 14 days of death (DOD), surgery within 30 DOD, > 1 emergency department visit, ≥ 1 hospitalization or intensive care unit admission within 30 DOD; in-hospital death; or hospice enrollment ≤ 3 DOD. We evaluated age, race, ethnicity, marital status, gender, socioeconomic status, comorbidities, prior treatment and percentage of time hospitalized. Multivariable logistic regression was performed to determine factors associated with aggressive end of life care. Results: Of 5827 patients, 2269 (38.9%) survived at least 6 months. Among these, 1106 (48.7%) survived 6-12 months, 558 (24.6%) survived 12-18 months, and 605 (26.7%) survived > 18 months. Patients who survived 6-12 months had the highest burden of hospitalization and spent a median of 10.6% of their remaining life in the hospital compared to those surviving 12-18 months (5.4%) and > 18 months (3%) (P < 0.001). 10.1% of the cohort had claims for palliative care services; 49.8% of initial palliative care consults occurred in the last 30 days of life. Hospice claims existed in 83% with a median length of stay 33 days (IQR 12, 79 days). 30.1% of subjects received aggressive EOL care. Receiving chemo at any time (OR 1.510, 95% CI 1.221-1.867) and spending ≥ 20% of life in the hospital after diagnosis (OR 3.331, 95% CI 2.567-4.324) were associated with aggressive EOL care. Women (OR 0.759, 95% CI 0.624-0.922), patients with higher socioeconomic status (OR 0.533, 95% CI 0.342-0.829), and those diagnosed ≥ age 80 (OR 0.723, 95% CI 0.528-0.991) were less likely to receive aggressive EOL care. Race, ethnicity, marital status, and extent of initial resection were not associated with aggressive EOL care. Conclusions: A minority of elderly patients with GBM in the SEER-Medicare database survived ≥ 6 months; hospitalizations were common and patients spent a significant proportion of their remaining life hospitalized. Although hospice utilization was high in this cohort, 30% of patients received aggressive EOL care. Despite the aggressive nature of GBM, few patients had palliative care consults during their illness. Increased utilization of palliative care services may help reduce hospitalization burden and aggressive EOL care in this population.

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Couples affected by dementia and their experiences of advance care planning: a grounded theory study

Ageing and Society ◽

10.1017/s0144686x1800106x ◽

2018 ◽

Vol 40 (2) ◽

pp. 439-460 ◽

Cited By ~ 2

Author(s):

Tony Ryan ◽

Jane McKeown

Keyword(s):

Grounded Theory ◽

End Of Life ◽

Advance Care Planning ◽

Care Planning ◽

Policy And Practice ◽

Global Policy ◽

Formal Service ◽

People With Dementia ◽

Advance Care ◽

End Of Life Issues

AbstractGlobal policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

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