scholarly journals Parents’ experiences of initiation of paediatric advance care planning discussions: a qualitative study

2021 ◽  
Author(s):  
Karen Carr ◽  
Felicity Hasson ◽  
Sonja McIlfatrick ◽  
Julia Downing
Keyword(s):  
Qualitative Study ◽  
Advance Care Planning ◽  
Health Professionals ◽  
Care Planning ◽  
Apparent Lack ◽  
Paediatric Palliative Care ◽  
Scant Attention ◽  
Advance Care ◽  
Advance Planning ◽  
Future Practice

AbstractAdvance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents’ experience of the initiation of their child’s advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were ‘giving up’. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families’ individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known:• In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child’s end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New:• Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals’ approach needs to be professional, respectful and empathetic to the parent and child’s situation.• Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.

scholarly journals Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

2015 ◽  
Vol 3 (31) ◽  
pp. 1-138 ◽  
Author(s):  
Kristian Pollock ◽  
Eleanor Wilson
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Community Care ◽  
Death And Dying ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

BackgroundAdvance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic.AimTo investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life.Design and data collectionQualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total.SettingGeneral practices and community care settings in the East Midlands of England.FindingsThe study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare.ConclusionsAdvance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity.Future workAttention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals ‘Traversing difficult terrain’. Advance care planning in residential aged care through multidisciplinary case conferences: A qualitative interview study exploring the experiences of families, staff and health professionals

2021 ◽  
pp. 026921632110132
Author(s):  
Suzanne Rainsford ◽  
Sally Hall Dykgraaf ◽  
Rosny Kasim ◽  
Christine Phillips ◽  
Nicholas Glasgow
Keyword(s):  
Advance Care Planning ◽  
Health Professionals ◽  
Aged Care ◽  
Shared Responsibility ◽  
Care Staff ◽  
Residential Aged Care ◽  
Care Planning ◽  
Qualitative Interview Study ◽  
Case Conferences ◽  
Advance Care

Background: Advance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning. Aim: To explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals. Design: A qualitative study (February–July 2019) using semi-structured interviews. Setting: Two residential aged care facilities in one Australian rural town. Participants: Fifteen informants [family ( n = 4), staff ( n = 5), health professionals ( n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences. Results: Advance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The ‘conversation’ was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident. Conclusion: While advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process.

scholarly journals How Do General Practitioners Conceptualise Advance Care Planning in Their Practice? A Qualitative Study

PLoS ONE ◽  
2016 ◽  
Vol 11 (4) ◽  
pp. e0153747 ◽  
Author(s):  
Aline De Vleminck ◽  
Koen Pardon ◽  
Kim Beernaert ◽  
Dirk Houttekier ◽  
Robert Vander Stichele ◽  
...  
Keyword(s):  
Qualitative Study ◽  
General Practitioners ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care

Enabling Advance Care Planning in Dementia Care: A Primary Care Approach

2020 ◽  
pp. 082585972097393
Author(s):  
Linda Lee ◽  
Loretta M. Hillier ◽  
Stephanie K. Lu ◽  
Donna Ward
Keyword(s):  
Primary Care ◽  
Advance Care Planning ◽  
Health Professionals ◽  
Online Survey ◽  
Ease Of Use ◽  
Depth Information ◽  
Care Planning ◽  
Care Approach ◽  
Memory Clinics ◽  
Advance Care

Background: Lack of tools to support advance care planning (ACP) has been identified as a significant barrier to implementing these discussions. Aim: We pilot tested an ACP framework tool for use with persons living with dementia (PLWD) in primary care-based memory clinics and an Adult Day Program; this study describes user and recipient experiences with this framework. Methods: We used a mixed methods approach. Health professionals completed an online survey following pilot testing and PLWD and substitute decision makers (SDM) completed survey immediately following the ACP discussion assessing their satisfaction (5-point scale) with the framework and exploring potential outcomes. Interviews with health professionals, PLWD, and SDM were conducted to gather more in-depth information on their perceptions of the ACP framework/ discussion. Results: Surveys were completed by 12 health professionals, 13 PLWD, and 16 SDM. While PLWD and SDM were satisfied with the ACP discussion (M = 4.0/5), health professionals were minimally satisfied with the ease of use of the framework (M = 2.0/5), acceptability for patients (M = 2.4/5) and feasibility in practice (M = 1.9/5). Sixteen interviews were completed with 8 health professionals, 1 PLWD, and 7 SDM. While health professionals valued ACP, lack of time and training were identified barriers to framework use. SDM felt better prepared for future decisions and PLWD were put at ease, knowing that their wishes for care were understood. Conclusion: PLWD and SDM value the opportunity for ACP, and although health professionals identified some concerns with framework administration, they acknowledge the value and importance of ACP. Continuing efforts to refine ACP processes are justified.

Understanding The Use Of Medicare Procedure Codes For Advance Care Planning: A National Qualitative Study

2022 ◽  
Vol 41 (1) ◽  
pp. 112-119
Author(s):  
Keren Ladin ◽  
Olivia C. Bronzi ◽  
Priscilla K. Gazarian ◽  
Julia M. Perugini ◽  
Thalia Porteny ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care ◽  
Procedure Codes
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