41 ‘We should not shy away from asking what it is that patients want’ a supplementary qualitative analysis of the jla peolcpsp free text data

2018 ◽  
Vol 8 (3) ◽  
pp. 375.1-375
Author(s):  
S Sivell ◽  
J Baillie ◽  
J VanGodwin ◽  
A Byrne ◽  
A Nelson
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Priority Setting ◽  
End Of Life Care ◽  
Support Needs ◽  
Free Text ◽  
List Type ◽  
Life Care ◽  
Text Data ◽  
Priority Setting Partnership

IntroductionPalliative and end-of-life care is under-researched (Higginson 2016) with stakeholders likely to have a range of unmet communication information and support needs. The James Lind Alliance (JLA) Priority Setting Partnership (PeolcPSP) identified the pertinent ‘treatment uncertainties’ for palliative and end-of-life care focusing on interventional based research (JLA PeolcPSP Survey 2015). Respondents also submitted comments that were out of scope of the JLA methodology.AimTo undertake a supplementary analysis of JLA PeolcPSP survey free text data focusing on communication information and support needs.MethodsA supplementary thematic qualitative analysis of the JLA PeolcPSP free-text data was undertaken in the final dataset of 1403 responses. The original coding framework was reviewed and refined until agreement was reached (Nelson 2016).ResultsApproximately one third of respondents (n=444; 31.65%) were included in this analysis; four overarching themes were identified:Availability accessibility and improving information: focusing on support and guidance as well as improving and finding information.Effectiveness of communication between stakeholders: openness and transparency between stakeholders; improving the communication of diagnosis and prognosis; exploring decision–making responsibilities.Eliciting preferences and values: treatment decisions Advance Care Planning and preferred place of care.Spiritual and psychosocial needs: providing emotional and psychological support for patients carers and professionals.ConclusionsWe identified a wide range of communication and decision-making concerns as well as psychosocial support adding further insight to the survey results. Both quantitative and qualitative approaches are recommended if we are to meet all stakeholders’ needs in palliative and end-of-life care.References. Higginson IJ. Research challenges in palliative and end of life care. BMJ Supportive & Palliative Care2016;6:2–4.. Nelson A. Between the lines/beyond the questions; Shared experiences of palliative and end of life care. Summary ReportJuly 2016. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beyond-the-questions-esrc-report.pdf. Palliative and end of life care Priority Setting Partnership (PeolcPSP). (2015). Final Report15 January 2015. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP_Final_Report.pdf (Accessed: 30 May 2018)

Negotiating Transitions: Involvement of Critical Care Outreach Teams in End-of-Life Decision Making

2015 ◽  
Vol 24 (3) ◽  
pp. 232-240 ◽  
Author(s):  
Natalie Pattison ◽  
Geraldine O’Gara ◽  
Timothy Wigmore
Keyword(s):  
Decision Making ◽  
Critical Care ◽  
Medical Treatment ◽  
End Of Life ◽  
End Of Life Care ◽  
Free Text ◽  
Life Care ◽  
End Of Life Decision ◽  
Life Decision ◽  
Critical Care Outreach

Background Little research has examined the involvement of critical care outreach teams in end-of-life decision making. Objective To establish how much time critical care outreach teams spend with patients who are subsequently subject to limitation of medical treatment and end-of-life decisions and how much influence the teams have on those decisions. Methods A single-center retrospective review, with qualitative analysis, in a large cancer center. Data from all patients referred emergently for critical care outreach from October 2010 to October 2011 who later had limitation of medical treatment or end-of-life care were retrieved. Findings were analyzed by using SPSS 19 and qualitative free-text analysis. Results Of 890 patients referred for critical care outreach from October 2010 to October 2011, 377 were referred as an emergency; 108 of those had limitation of medical treatment and were included in the review. Thirty-five patients (32.4%) died while hospitalized. As a result of outreach intervention and a decision to limit medical treatment, 56 (51.9%) of the 108 patients received a formal end-of-life care plan (including care pathways, referral to palliative care team, hospice). About a fifth (21.5%) of clinical contact time is being spent on patients who subsequently are subject to limitation of medical treatment. Qualitative document analysis showed 5 emerging themes: difficulty of discussions about not attempting cardiopulmonary resuscitation, complexities in coordinating multiple teams, delays in referral and decision making, decision reversals and opaque decision making, and technical versus ethical imperatives. Conclusion A considerable amount of time is being spent on these emergency referrals, and decisions to limit medical treatment are common. The appropriateness of escalation of levels of care is often not questioned until patients become critically or acutely unwell, and outreach teams subsequently intervene.

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.

7 Exploring healthcare professionals’ attitudes to future care planning with older adults in hospital: qualitative research co-design through multi-professional patient and carer involvement

2018 ◽  
Vol 8 (3) ◽  
pp. 362.2-362
Author(s):  
Anna-Maria Bielinska ◽  
Stephanie Archer ◽  
Catherine Urch ◽  
Ara Darzi
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
List Type ◽  
Care Planning ◽  
Life Care ◽  
Topic Guide ◽  
Future Care ◽  
Advance Care

IntroductionDespite evidence that advance care planning in older hospital inpatients improves the quality of end-of-life care (Detering 2010) future care planning (FCP) with older adults remains to be normalised in hospital culture. It is therefore crucial to understand the attitudes of healthcare professionals to FCP in older patients in the hospital setting. Co-design with patients carers and healthcare professionals can generate more detailed meaningful data through better conversations.AimsTo co-design a semi-structured interview (SSI) topic guide to explore healthcare professionals’ attitudes to FCP with older adults in hospital.MethodsA multi-professional research group including a panel of patient and carer representatives co-designed an in-depth topic guide for a SSI exploring healthcare professionals’ attitudes to FCP with older adults in hospital.ResultsThe co-designed topic guide encourages participants to explore personal and system-level factors that may influence attitudes to FCP and practice in hospital amongst healthcare staff. Co-designed topics for inclusion in the SSI schedule include:Potential differences between specialist and generalist approaches to FCPThe influence of perceived hierarchy and emergency–decision making ability in professionals on FCP discussionsThe relevance to transitions of careAttitudes to FCP beyond the biomedical paradigm including perceived well–being and psychosocial aspects of careDigital FCP tools including patient–led FCP.ConclusionCo-designing qualitative research with older people and multi-disciplinary professionals may narrow translational gaps in implementing FCP by setting joint research priorities. Data generated from a co-designed study may expand understanding of hospital-based anticipatory decision-making with older adults.Reference. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ23 March 2010;340:c1345.

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