scholarly journals ‘It’s a hard conversation to have’. Healthcare professionals’ views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

2017 ◽  
Vol 9 (1) ◽  
pp. e9-e9
Author(s):  
Andy Hiscock ◽  
Stephen Barclay
Keyword(s):  
Young People ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Neuromuscular Diseases ◽  
Individual Case ◽  
Life Care ◽  
Care Plans ◽  
Advance Care ◽  
The Uk

ObjectiveLife-limiting neuromuscular disease, such as some of the muscular dystrophies, are often diagnosed in early childhood: when death comes, commonly in the second or third decade of life, patients rarely have advance care plans in place or documented end-of-life care preferences. There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. The aim of this study was to investigate the views and experiences of healthcare professionals concerning having discussions about advance care plans and end-of-life care with teenagers and young adult patients affected by life-limiting neuromuscular diseases.MethodsSemistructured interviews with a maximum variety sample of nine professionals involved in the care of young people with life-limiting neuromuscular diseases in one region of the UK.ResultsWhile recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.ConclusionsCommunity-based professionals with well-established relationships with patients and families may be best placed to take the lead and coordinate discussions, but individual case-by-case preferences need to be carefully considered.

Faith-sensitive end of life care for children, young people and their families

2021 ◽  
Vol 30 (5) ◽  
pp. 276-279
Author(s):  
Claire Camara ◽  
Leah Rosengarten
Keyword(s):  
Young People ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Life Care ◽  
Personal Beliefs ◽  
Individual Level ◽  
Key Points ◽  
The Uk

This article is part of an at a glance series on palliation and end of life care in paediatrics and focuses on the provision of faith-sensitive end of life care. Particular religions are discussed, with some key points for care of patients from some of the most prevalent religions within the UK. This article is intended to give points for discussion and consideration, but health professionals are encouraged to speak to every patient and family on an individual level to ensure an understanding of their personal beliefs. Although there is a range of literature discussing faith during end-of-life care, there is litte that outlines the practical specifics and for this reason some of the supporting literature in this article is dated and, where possible, this has been supported with contemporary sources.

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

scholarly journals Healthcare professionals' online use of violence metaphors for care at the end of life in the US: a corpus-based comparison with the UK

Corpora ◽  
2017 ◽  
Vol 12 (1) ◽  
pp. 55-84 ◽  
Author(s):  
Amanda Potts ◽  
Elena Semino
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Quantitative Methods ◽  
Healthcare Professionals ◽  
Life Care ◽  
Professional Discourse ◽  
The Us ◽  
Query Tool ◽  
Institutional Contexts ◽  
The Uk

The use of violence metaphors in healthcare has long been criticised as detrimental to patients. Recent work ( Demmen et al., 2015 ; and Semino et al., 2015 ) has combined qualitative analysis with corpus-based quantitative methods to analyse the frequency and variety of violence metaphors in the language of UK-based patients, family carers and healthcare professionals talking about cancer and/or end-of-life care. A new 250,324-word corpus of US health professionals' online discourse has been collected to add a contrastive, cross-cultural element to the study of metaphors in end-of-life care. In this work, we move towards a replicable method for comparing frequency and type of violence metaphors in UK and US contexts by making use of both search-and-recall and key semantic tag analysis using the corpus query tool Wmatrix. First, we discuss the most over-used and under-used semantic domains in the US corpus as compared with the pre-existing UK corpus of online healthcare professional discourse. Second, we show that there are no notable frequency differences in the occurrence of violence metaphors in the two corpora, but we point out some differences in the topics that these metaphors are used to discuss. Third, we introduce a novel framework for analysing agency in violence metaphors and apply it to the US corpus. This reveals the variety of relationships, concerns and challenges that these metaphors can express. Throughout, we relate our findings to the different US and UK cultural and institutional contexts, and we reflect on the methodological implications of our approach for corpus-based metaphor analysis.

scholarly journals No place like home: A case study of a patient discharged from an Intensive Care Unit for end of life care at home

2018 ◽  
Vol 19 (3) ◽  
pp. 259-263 ◽  
Author(s):  
David Smith ◽  
Donna Hall ◽  
Geraldine Parke ◽  
Rebecca Lane ◽  
Alison Gray
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Community Services ◽  
Life Care ◽  
Good Communication ◽  
Advance Care ◽  
The Uk

Introduction Both in the UK and internationally, discharge from an intensive care unit to home for end of life care is a rare and challenging occurrence. These challenges include clinicians’ ability to identify appropriate patients in whom it is possible to communicate with about their wishes and preferences, the critical nature of their condition and the interface between hospital and community services. Method We present a case report of a patient who had been admitted to hospital with a myocardial infarction and subsequently suffered a cardiac arrest, from which he was successfully resuscitated. Subsequently, he suffered multi-organ failure, but despite treatments, the ceiling of care was reached. With a poor prognosis, medical and nursing staff engaged in advance care planning to determine his wishes and preferences at the end of life and to facilitate his discharge from the intensive care unit to his home. Conclusion This case study has highlighted that through good communication amongst patients, families and professionals and collaborative working across boundaries and organisations, appropriate patients in the critical care setting can have a real choice regarding where they wish to be cared for and die at the end of their life.

scholarly journals End of Life Care and Advance Care Planning for People with Dementia: A Pilot Simulation Course for Healthcare Professionals

2022 ◽  
Vol 62 ◽  
pp. 20-24
Author(s):  
Chun-Kit Chu ◽  
Aleks Saunders ◽  
Sandra Parish ◽  
Nykki Hetherton ◽  
Sean Cross ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care

Advance care planning: the who, what, when, where and why

2020 ◽  
Vol 81 (2) ◽  
pp. 1-6
Author(s):  
Anna J Steel ◽  
Lucy H Owen
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Medical Workforce ◽  
Care Plans ◽  
Future Care ◽  
Advance Care ◽  
Preferences For Care

Advance care planning is an opportunity for patients to express their priorities for future care. NHS England has outlined a commitment to end-of-life care, advocating a shift towards more patient-centred care. The NHS is encouraging the workforce to engage patients in conversations about what is important to them, shifting the focus from ‘what is wrong with you’ to ‘what matters to you’. Traditionally, this was seen as the doctor's role but this conversation can and should happen with the wider skilled medical workforce. The key to advance care planning is to have these conversations early on when patients have the capacity to discuss their preferences for care. Advance care planning can occur in any setting where the patient is comfortable to have the conversation, be that at home, in the GP surgery, in hospital or another setting. Patients with advance care plans are more likely to have their wishes respected, have fewer unwanted interventions, experience reduced transitions between care settings and are more likely to die in their preferred place of death. Healthcare professionals have a duty to offer advance care planning to patients nearing the last phase of life so that care can be delivered to honour individual needs at the end of life.

Uptake and implementation of Advance Care Planning in Australia: findings of key informant interviews

2012 ◽  
Vol 36 (1) ◽  
pp. 98 ◽  
Author(s):  
Joel J. Rhee ◽  
Nicholas A. Zwar ◽  
Lynn A. Kemp
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Care Plans ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues

Objective. Advance Care Planning (ACP) has an important role in enhancing patient autonomy and guiding end-of-life care. However, there is low uptake of ACP and evidence that advance care plans are often not implemented. We explored these issues in interviews with expert clinicians and representatives of key stakeholder organisations with interest in end-of-life care. Method. Qualitative descriptive study of semi-structured telephone interviews with 23 participants. Results. Participants thought that the low uptake of ACP in Australia is a result of inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP. Problems in implementation of advance care plans were thought to be a result of problems in accessing ACP documents; interpreting written documents; making binding decisions for future unpredictable situations; and paternalistic attitudes of health professionals and families. Participants had different perspectives on how advance care plans should be implemented, with some believing in strict implementation, whereas others believed in a more flexible approach. Implications. Low uptake and poor implementation of advance care plans may be addressed by (1) increasing community awareness; (2) encouraging health professional involvement; and (3) system-wide implementation of multi-faceted interventions. A patient-centred approach to ACP is required to resolve the differences in views on how advance care plans should be implemented. What is known about the topic? Advance Care Planning (ACP) has been gaining prominence in Australia for its role in enhancing a patient’s autonomy and as an important component of good end-of-life care. Evidence from overseas and a limited number of Australian studies have identified several problems with ACP. First, the uptake of ACP seems to be low. Second, even when ACP process takes place, the resultant plans are often not implemented and make little effect on delivery of end-of-life care. What does this paper add? This paper confirms that the uptake of ACP is limited in Australia and is a result of inadequate awareness, societal reluctance to discuss end-of-life issues, and lack of health professionals’ involvement in ACP. Problems in implementation of advance care plans may be because of problems in: accessing ACP documents, interpreting written documents, making binding decisions for future unpredictable situations, and paternalistic attitudes of health professionals and families. This paper also shows that there are different perspectives in how advance care plans should be implemented, with some believing in strict implementation, whereas others believed in a more flexible approach. What are the implications for practitioners? This paper outlines several ways in which problems in the uptake and implementation of advance care plans may be addressed. This involves (1) increasing community awareness; (2) encouraging health professional involvement in ACP; and (3) system-wide implementation of multi-faceted interventions in ACP. Our findings also suggest that there needs to be a shift from a one-size-fits-all approach to implementing advance care plans to a more flexible patient-centred approach. This approach could ensure that a patient’s autonomy and right to self-determination are adequately protected, while also catering to the needs of those requiring more flexible approaches to end-of-life decision-making.

What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation

2021 ◽  
pp. 104990912098828
Author(s):  
Katherine B. Grill ◽  
Jichuan Wang ◽  
Rachel K. Scott ◽  
Debra Benator ◽  
Lawrence J. D’Angelo ◽  
...  
Keyword(s):  
African American ◽  
African Americans ◽  
End Of Life ◽  
End Of Life Care ◽  
Odds Ratio ◽  
Self Determination ◽  
Hiv Care ◽  
Life Care ◽  
Care Plans ◽  
Advance Care

Objective: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). Methods: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial. Findings: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. Conclusion: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.

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