Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals

AbstractObjectivesAsia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients’ autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled.MethodsGuided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals’ attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis.ResultsThe extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices.Significance of resultsHealthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

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Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study

BMJ Open ◽

10.1136/bmjopen-2018-028548 ◽

2019 ◽

Vol 9 (5) ◽

pp. e028548 ◽

Cited By ~ 5

Author(s):

Sarah Mitchell ◽

Jenna L Spry ◽

Emma Hill ◽

Jane Coad ◽

Jeremy Dale ◽

...

Keyword(s):

Decision Making ◽

End Of Life ◽

End Of Life Care ◽

Healthcare Professionals ◽

Qualitative Interview ◽

Life Care ◽

Parental Experiences ◽

Qualitative Interview Study ◽

Life Threatening ◽

Care Decision

ObjectivesTo provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).DesignAn in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.SettingA PICU in a large National Health Service (NHS) tertiary children’s hospital in the West Midlands, UK.Participants17 parents of 11 children who had died in the PICU.ResultsFive interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a ‘place of acceptance’.(5) Families perceive benefits to receiving end of life care for their child in a PICU.Conclusions and implicationsThe death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.

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124 Perceived Quality of End-Of-Life Communication Provided by Healthcare Professionals Among Frail Older Chinese Patients

Age and Ageing ◽

10.1093/ageing/afab030.85 ◽

2021 ◽

Vol 50 (Supplement_1) ◽

pp. i12-i42

Author(s):

D Y P Leung ◽

Z Wan ◽

H Y L Chan ◽

P K C Chiu ◽

R S K Lo ◽

...

Keyword(s):

Decision Making ◽

End Of Life ◽

Formal Education ◽

Healthcare Professionals ◽

Controlled Trial ◽

Perceived Quality ◽

Chinese Patients ◽

Older Chinese ◽

Eol Care

Abstract Introduction Better communications among the patient, their family, and healthcare providers can enable a shared understanding on patient’s end-of-life (EOL) care preferences. Discussion about death-related issue however has been thought to be taboo among Chinese people. This study aims to explore perceived quality of EOL communication provided by healthcare professionals (HCPs) among frail older Chinese patients. Method Frail older patients were recruited from a medical ward of a public hospital for a randomized controlled trial of the effectiveness of a nurse-led advance care planning. Participants completed a baseline questionnaire including the 7-item Quality of Communication (QOC) Questionnaire which measures perceived quality of EOL communication provided by HCPs (0 “The worst or none happened” to 10 “The best”). Bivariate analyses examined associated factors of QOC. Results Between December 2018 and January 2020, 105 participants were recruited and have completed the QOC. Their mean age was 80 years old (SD = 7.1), and 74% (n = 78) reported had received some formal education. A total of 95 participants (91%) responded “0” to all the 7 items in QOC (poor QOC group). For individual QOC item, all participants scored “0” in 4 items, 99 scored “0” in Item 1 “Talking about details if you got sicker”, 104 scored “0” in Item 2 “Talking about how long you might have to live”, and 101 scored “0” in Item 7 “Respecting your spiritual or religious beliefs”. Participants with “0” score in QOC reported a significant lower mean level in certainty regarding decision-making in EOL preferences (1.2 ± 1.6 vs. 2.3 ± 1.8, p = 0.039). Conclusion Occurrence of talking about EOL care with frail older Chinese patients by HCPs was rare, and the quality of EOL communication associated with decision-making certainty regarding EOL preferences. Training of initiation of EOL discussions and improve communication skills for HCPs is essential. Funding: RGC, HKSAR, China (PolyU14162617H).

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Continuums of Change in a Competence-Building Initiative Addressing End-of-Life Communication in Swedish Elder Care

Qualitative Health Research ◽

10.1177/10497323211012986 ◽

2021 ◽

pp. 104973232110129

Author(s):

Therese Johansson ◽

Carol Tishelman ◽

Joachim Cohen ◽

Lars E. Eriksson ◽

Ida Goliath

Keyword(s):

Decision Making ◽

End Of Life ◽

Residential Care ◽

Elder Care ◽

Care Home ◽

Knowledge Exchange ◽

Residential Care Home ◽

Eol Care ◽

End Of Life Communication ◽

Care Decision

Conversations about values for the end-of-life (EoL) between residents, relatives, and staff may allow EoL preparation and enable value-concordant care, but remain rare in residential care home (RCH) practice. In this article, longitudinal qualitative analysis was used to explore changes in staff discussions about EoL conversations throughout workshop series based on reflection and knowledge exchange to promote EoL communication in RCHs. We identified three overall continuums of change: EoL conversations became perceived as more feasible and valuable; conceptualizations of quality EoL care shifted from being generalizable to acknowledging individual variation; and staff’s role in facilitating EoL communication as a prerequisite for care decision-making was emphasized. Two mechanisms influenced changes: cognitively and emotionally approaching one’s own mortality and shifting perspectives of EoL care. This study adds nuance and details about changes in staff reasoning, and the mechanisms that underlie them, which are important aspects to consider in future EoL competence-building initiatives.

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Shared decision-making at the end of life: A focus group study exploring the perceptions and experiences of multi-disciplinary healthcare professionals working in the home setting

Palliative Medicine ◽

10.1177/0269216317734434 ◽

2017 ◽

Vol 32 (1) ◽

pp. 123-132 ◽

Cited By ~ 5

Author(s):

Paula Brogan ◽

Felicity Hasson ◽

Sonja McIlfatrick

Keyword(s):

Decision Making ◽

End Of Life ◽

Shared Decision Making ◽

Healthcare Professionals ◽

Shared Decision ◽

Focus Group Study ◽

Home Setting ◽

The United Kingdom ◽

Organisational Factors ◽

Future Work

Background: Globally recommended in healthcare policy, Shared Decision-Making is also central to international policy promoting community palliative care. Yet realities of implementation by multi-disciplinary healthcare professionals who provide end-of-life care in the home are unclear. Aim: To explore multi-disciplinary healthcare professionals’ perceptions and experiences of Shared Decision-Making at end of life in the home. Design: Qualitative design using focus groups, transcribed verbatim and analysed thematically. Setting/participants: A total of 43 participants, from multi-disciplinary community-based services in one region of the United Kingdom, were recruited. Results: While the rhetoric of Shared Decision-Making was recognised, its implementation was impacted by several interconnecting factors, including (1) conceptual confusion regarding Shared Decision-Making, (2) uncertainty in the process and (3) organisational factors which impeded Shared Decision-Making. Conclusion: Multiple interacting factors influence implementation of Shared Decision-Making by professionals working in complex community settings at the end of life. Moving from rhetoric to reality requires future work exploring the realities of Shared Decision-Making practice at individual, process and systems levels.

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An Instrument to Assess Self-Perceived Competencies in End-of-Life Care for Health Care Professionals: The End-of-Life Care Questionnaire

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211005735 ◽

2021 ◽

pp. 104990912110057

Author(s):

Marcos Montagnini ◽

Heather M. Smith ◽

Deborah M. Price ◽

Linda Strodtman ◽

Bidisha Ghosh

Keyword(s):

Decision Making ◽

End Of Life ◽

Continuity Of Care ◽

Emotional Support ◽

Symptom Management ◽

End Of Life Care ◽

Spiritual Support ◽

Life Care ◽

Eol Care ◽

Care Decision

Purpose: We describe the development and the psychometric properties of an instrument to assess self-perceived EOL care competencies for healthcare professionals: The End-of-Life Care Questionnaire (EOL-Q). Methods: The EOL-Q consists of 28 questions assessing knowledge, attitudes and behaviors with subscale items addressing seven domains of care: decision-making, communication, continuity of care, emotional support for patients/families, symptom management, spiritual support for patients/families, and support for clinicians. The EOL-Q was used to assess competencies of 1,197 healthcare professionals from multiple work units at a large medical center. Cronbach’s alpha coefficients were calculated for the survey and subscales. A factor analysis was also conducted. Results: Internal consistency reliability was for was high for the total scale (0.93) and for the subscales addressing knowledge, behaviors, decision-making, communication, emotional support and symptom management (0.84-0.92); and moderate (>0.68) for the attitudes and continuity of care subscales. The factor analysis demonstrated robust consolidation of the communication and continuity of care subscales (eigenvalue 9.47), decision-making subscale (eigenvalue 3.38), symptom management subscale (eigenvalue 1.51), and emotional and spiritual support subscales (eigenvalue 1.13). Conclusion: Analysis of the psychometric properties of the EOL-Q care across settings supports its reliability and validity as a measure of self-perceived EOL care competencies in the domains of communication and continuity of care, decision-making, symptom management, and emotional and spiritual support. The EOL-Q displays promise as a tool for use in a variety of educational, research, and program development initiatives in EOL care.

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