Health and death literacy and cultural diversity: insights from hospital-employed interpreters

2017 ◽  
Vol 10 (1) ◽  
pp. e8-e8 ◽  
Author(s):  
Barbara Hayes ◽  
Anne Marie Fabri ◽  
Maria Coperchini ◽  
Rafatullah Parkar ◽  
Zoe Austin-Crowe
Keyword(s):  
End Of Life ◽  
Qualitative Description ◽  
Cultural Issues ◽  
Structured Interviews ◽  
Individual Values ◽  
Language Groups ◽  
A Value ◽  
Values And Beliefs ◽  
Advance Care ◽  
End Of Life Decision

Objectives001225The aim of this qualitative study is to better understand, through the experiences and insights of hospital interpreters, how people from culturally and linguistic diverse (CALD) communities might respond to advance care planning (ACP) and end-of-life discussions.MethodsHospital interpreters from five Melbourne metropolitan health services were recruited for in-depth semi-structured interviews that explored the question, ‘What can be learnt from hospital interpreters about cultural issues related to ACP and end-of-life decision-making?’ Thirty-nine interpreters, representing 22 language groups, were interviewed. Analysis of the transcribed interviews used qualitative description.ResultsThematic analysis identified three major themes: (1) moral difference; (2) health and death literacy; and (3) diversity within culture.ConclusionA value-based approach to ACP is recommended as a way to capture the person’s individual values and beliefs. Health and death literacy have been identified as areas that may be over-estimated; areas that can be addressed and improved, if recognised. Health and death literacy is a particular area that needs to be assessed and addressed as a pre-requisite to ACP discussions.

Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers

2017 ◽  
Vol 13 (3) ◽  
pp. 171-187 ◽  
Author(s):  
Lauren A Hutchison ◽  
Donna S Raffin-Bouchal ◽  
Charlotte A Syme ◽  
Patricia D Biondo ◽  
Jessica E Simon
Keyword(s):  
Renal Failure ◽  
End Of Life ◽  
Advance Care Planning ◽  
Healthcare Providers ◽  
Care Planning ◽  
Structured Interviews ◽  
Individual Values ◽  
Advance Care ◽  
The Moment ◽  
End Of Life Decision

Objectives Advance care planning is the process by which people reflect upon their wishes and values for healthcare, discuss their choices with family and friends and document their wishes. Readiness represents a key predictor of advance care planning participation; however, the evidence for addressing readiness is scarce within the renal failure context. Our objectives were to assess readiness for advance care planning and barriers and facilitators to advance care planning uptake in a renal context. Methods Twenty-five participants (nine patients, nine clinicians and seven family members) were recruited from the Southern Alberta Renal Program. Semi-structured interviews were recorded, transcribed and then analyzed using interpretive description. Results Readiness for advance care planning was driven by individual values perceived by a collaborative encounter between clinicians and patients/families. If advance care planning is not valued, then patients/families and clinicians are not ready to initiate the process. Patients and clinicians are delaying conversations until “illness burden necessitates,” so there is little “advance” care planning, only care planning in-the-moment closer to the end of life. Discussion The value of advance care planning in collaboration with clinicians, patients and their surrogates needs reframing as an ongoing process early in the patient’s illness trajectory, distinguished from end-of-life decision making.

‘It all depends!’: A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers

2019 ◽  
Vol 33 (7) ◽  
pp. 802-811 ◽  
Author(s):  
Katrin Gerber ◽  
Barbara Hayes ◽  
Christina Bryant
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Caregivers ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision

Background: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life. Aim: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death. Design: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description. Setting/participants: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia. Results: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences. Conclusions: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

scholarly journals ‘It all depends!’ – Preferences for place of care and place of death in terminally ill patients and their carers

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision ◽  
Life Decision

<div><b>Background</b>: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and carers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end of life.</div><div><b>Aim</b>: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.</div><div>Design: Semi-structured interviews with patients and carers, which were analysed thematically using qualitative description.</div><div><b>Setting/ participants</b>: A total of 17 participants (eight patients and nine carers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative</div><div>homecare organisation in Melbourne, Australia.</div><div><b>Results</b>: The process of forming preferences for place of care and place of death was shaped by uncertainty relating to the illness, the carer and the services. Participants dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, participants expressed their choices as conditional, personal, relational, contextual and flexible preferences.</div><div><b>Conclusions</b>: End-of-life decision-making rarely ends with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are</div><div>formed has implications for both clinicians and researchers.</div>

scholarly journals ‘It all depends!’ – Preferences for place of care and place of death in terminally ill patients and their carers

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminally Ill ◽  
Qualitative Description ◽  
Place Of Death ◽  
Care Hospital ◽  
Structured Interviews ◽  
Terminally Ill Patients ◽  
End Of Life Decision ◽  
Life Decision

<div><b>Background</b>: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and carers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end of life.</div><div><b>Aim</b>: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.</div><div>Design: Semi-structured interviews with patients and carers, which were analysed thematically using qualitative description.</div><div><b>Setting/ participants</b>: A total of 17 participants (eight patients and nine carers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative</div><div>homecare organisation in Melbourne, Australia.</div><div><b>Results</b>: The process of forming preferences for place of care and place of death was shaped by uncertainty relating to the illness, the carer and the services. Participants dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, participants expressed their choices as conditional, personal, relational, contextual and flexible preferences.</div><div><b>Conclusions</b>: End-of-life decision-making rarely ends with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are</div><div>formed has implications for both clinicians and researchers.</div>

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

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.

Effect of female-dominant support networks on end-of-life decision making among women with advanced or recurrent cancer.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6590-6590
Author(s):  
Katina Robison ◽  
Ashley Stuckey ◽  
Don S. Dizon ◽  
Michelle Rogers ◽  
Miles Ott ◽  
...  
Keyword(s):  
Breast Cancer ◽  
End Of Life ◽  
Support Networks ◽  
Health Care Proxy ◽  
End Of Life Decisions ◽  
Recurrent Cancer ◽  
Support Person ◽  
Advance Care ◽  
End Of Life Decision ◽  
Life Decision

6590 Background: Improved understanding of the factors that influence a woman’s end of life (EOL) decisions while confronting cancer is needed. The objective of this study was to determine if the composition of one’s social network was associated with advance care planning (ACP) among women with metastatic or recurrent gynecologic or breast cancer. Methods: Women were recruited from a program in women’s oncology in the northeast. Women with an established diagnosis of recurrent or metastatic cancer for ≥3 months duration were eligible. We asked women with advanced or recurrent cancer about their support networks and end-of-life decisions. Interviews were conducted by research staff. Clinical characteristics and documentation of EOL decisions of enrolled women were obtained through chart reviews. Multivariable logistic models were computed. The study protocol was approved by the hospital and university Institutional Review Boards. Results: 200 women were enrolled in the study. The majority had gynecologic malignancies (65.5%). Older age was associated with having an advanced directive (AD) (p<.0001) and a health care proxy (HCP) (p=0.002). Additionally, having more females than males in one’s support network was associated with an AD (p=0.005) and a HCP (p=0.012). Women with gynecologic cancer were more likely to self-report a HCP compared to those with breast cancer (p=0.040).A female support person was 1.57 times more likely to be trusted to make a medical decision (p=0.002) and a female support person was 1.33 times more likely to be someone a woman spoke with about her end of life decision than a male support person (p=0.037). Neither naming a HCP or having an AD were associated with number of support persons named, total number of female support persons, number of friends, number of children, or presence of an intimate partner. Conclusions: Women with more females than males in their social network were more likely to have an advance care directive or health care proxy. In addition, women were more likely to trust and talk with a female support person about end of life decisions than a male support person. However, the composition of the network was not associated with the likelihood of having completed ACP.

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