A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Introduction: Advance care planning is recommended in chronic respiratory diseases, including Idiopathic Pulmonary Fibrosis. In practice, uptake remains low due to patient, physician and system-related factors, including lack of time, training and guidance on timing, components and content of conversations. Our aim was to explore perspectives, experiences and needs to inform a framework. Methods: We conducted a qualitative study in western Canada, using semi-structured interviews and inductive analysis. Patient, caregiver and health care professional participants described advance care planning experiences with Idiopathic Pulmonary Fibrosis. Results: Twenty participants were interviewed individually: 5 patients, 5 caregivers, 5 home care and 5 acute care health care professionals. Two categories, perceptions and recommendations, were identified with themes and subthemes. Participant perceptions were insufficient information and conversations occur late. Recommendations were: have earlier conversations; have open conversations; provide detailed information; and plan for end-of-life. Patients and caregivers wanted honesty, openness and clarity. Professionals related delayed timing to poor end-of-life care and distressing deaths. Home care professionals described comfort with and an engaged approach to advance care planning. Acute care professionals perceived lack of clarity of roles and described personal, patient and caregiver distress. Interpretation: Analysis of diverse experiences provided further understanding of advance care planning in Idiopathic Pulmonary Fibrosis. Advance care planning is desired by patients and caregivers early in their illness experience. Health care professionals described a need to clarify role, scope and responsibility. Practical guidance and training must be available to care providers to improve competency and confidence in these conversations.

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Advance care planning in Norwegian nursing homes – limited awareness of the residents’ preferences and values? A qualitative study

BMC Geriatrics ◽

10.1186/s12877-019-1378-6 ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 1

Author(s):

Lisbeth Thoresen ◽

Reidar Pedersen ◽

Lillian Lillemoen ◽

Elisabeth Gjerberg ◽

Reidun Førde

Keyword(s):

Health Care ◽

Nursing Homes ◽

Advance Care Planning ◽

Health Care Professionals ◽

Qualitative Content Analysis ◽

Care Planning ◽

Next Of Kin ◽

Medical Issues ◽

Interdisciplinary Approaches ◽

Advance Care

Abstract Background 52% of all deaths in Norway occur in nursing homes. Still advance care planning (ACP) is scarce and heterogeneous. To improve the implementation and practice of ACP in nursing homes, knowledge about health care professionals’ views on ACP is vital. The objective of this study is to explore nurses and physicians’ aims and experiences with carrying out ACP in nursing homes. Methods Semi-structured group interviews were conducted with 20 health care professionals, recruited from nursing homes where ACP was performed regularly. Qualitative content analysis was used to analyse the data. Results The primary aim of the nursing home professionals when doing ACP in nursing homes were to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with being sensitive, and ii) when the physicians raised questions concerning future medical treatment, the answers from residents as well as next of kin were often hesitant and unclear. Conclusion Our study add insights into how ACP is practiced in nursing homes and the professionals’ agenda. A focus on medical issues and achieving consensus with next of kin may result in lack of involvement of the residents and limited awareness of the residents’ needs. Interdisciplinary approaches, ACP-training and tailored guidelines may improve the implementation and practice of ACP.

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Conversations that count: Advance Care Planning as preventative medicine

International Journal of Whole Person Care ◽

10.26443/ijwpc.v5i1.175 ◽

2018 ◽

Vol 5 (1) ◽

Author(s):

Kate Grundy ◽

Jane Goodwin ◽

Elaine McLardy

Keyword(s):

Health Care ◽

Advance Care Planning ◽

Health Care Professionals ◽

Consumer Information ◽

Health Board ◽

Care Planning ◽

District Health ◽

Awareness Campaign ◽

Care Plans ◽

Advance Care

Background: Fundamental to the concept of Advance Care Planning (ACP) is empowering individuals and communities to recognise death as an inevitable part of life.Methods: ACP facilitators and clinical champions in the Canterbury region of New Zealand have been very active in engaging the community. This has occurred through consumer presentations, the creation of specific pages on the Canterbury District Health Board (CDHB) consumer information website (HealthInfo) and support of the National ACP awareness campaign ‘Conversations that Count’.Results: ‘Consumer power’ has been invaluable in driving the uptake of ACP in the CDHB. A survey of 49 GPs in 2015 found many were reluctant to start ACP conversations or felt they ‘did not have time’. The turning point was the realisation that patients are not only wanting but are actively asking to have these important conversations and to create Advance Care Plans (ACPlans). 1200 electronic ACPlans have now now been created in Canterbury, with 80% generated in primary care.The ACP pages on HealthInfo are consistently in the top 20 pages viewed each month which indicates that the community is seeking information and wanting to take control. Uptake and demand for consumer presentations and ‘Conversations that Count’ resources also continues to grow year on year.Discussion: Increased awareness and understanding of ACP gives people the opportunity to think and frame their reasoning, so they are better prepared to have well informed discussions with health care professionals. It helps them be clearer in their mind about their own limits and concerns. It is important for people to consider the question - “what is O.K for me and what isn’t?”. In this context, ACP conversations can be seen as preventative medicine.Patients need to be as well equipped as possible to be active participants in healthcare decisions, especially regarding end of life. Through the ACP process, unnecessary suffering, confusion and conflict can be reduced or prevented and unwanted or burdensome treatment that is not in line with their goals and priorities can be averted.Conclusion: Valuing and honouring a person’s participation in their health care decision-making is important for all healthcare organisations. Prioritising ACP is an effective way of making this happen.

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Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature

Dementia ◽

10.1177/1471301215604997 ◽

2015 ◽

Vol 16 (4) ◽

pp. 486-512 ◽

Cited By ~ 18

Author(s):

Esther-Ruth Beck ◽

Sonja McIlfatrick ◽

Felicity Hasson ◽

Gerry Leavey

Keyword(s):

Health Care ◽

Advance Care Planning ◽

Health Care Professionals ◽

Long Term Care ◽

Care Planning ◽

Term Care ◽

Early Integration ◽

People With Dementia ◽

Advance Care

This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.

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What do renal health-care professionals in Singapore think of advance care planning for patients with end-stage renal disease?

Nephrology ◽

10.1111/j.1440-1797.2010.01401.x ◽

2011 ◽

Vol 16 (2) ◽

pp. 232-238 ◽

Cited By ~ 16

Author(s):

ALETHEA YEE ◽

YING YING SEOW ◽

SZE HUEY TAN ◽

CYNTHIA GOH ◽

LIMIN QU ◽

...

Keyword(s):

Health Care ◽

Renal Disease ◽

Advance Care Planning ◽

Health Care Professionals ◽

End Stage Renal Disease ◽

Care Planning ◽

Advance Care ◽

Stage Renal Disease ◽

End Stage

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Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: a narrative review of the literature

Nursing Older People ◽

10.7748/nop.28.5.14.s22 ◽

2016 ◽

Vol 28 (5) ◽

pp. 14-14

Author(s):

Hazel Heath

Keyword(s):

Health Care ◽

Advance Care Planning ◽

Health Care Professionals ◽

Long Term Care ◽

Care Planning ◽

Review Of The Literature ◽

Term Care ◽

People With Dementia ◽

Advance Care

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The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

Journal of Medical Internet Research ◽

10.2196/15578 ◽

2020 ◽

Vol 22 (3) ◽

pp. e15578 ◽

Cited By ~ 2

Author(s):

Doris van der Smissen ◽

Anouk Overbeek ◽

Sandra van Dulmen ◽

Lisette van Gemert-Pijnen ◽

Agnes van der Heide ◽

...

Keyword(s):

United States ◽

Health Care ◽

Advance Care Planning ◽

Health Care Professionals ◽

The United States ◽

Care Planning ◽

Web Based ◽

Future Care ◽

Advance Care ◽

Study Designs

Background Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients’ preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and—if appropriate—family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. Objective This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. Methods We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs’ content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. Results Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs—10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). Conclusions Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.

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INCOMPLETE ADVANCE CARE PLANNING? CORRELATES OF PLANNING WITHOUT PERSONAL CONVERSATIONS

Innovation in Aging ◽

10.1093/geroni/igz038.1589 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S425-S426

Author(s):

Kathrin Boerner ◽

Deborah Carr ◽

Katherine M Ornstein ◽

Sara Moorman

Keyword(s):

Health Care ◽

Social Isolation ◽

Health Care Providers ◽

Advance Care Planning ◽

Health Care Professionals ◽

Living Will ◽

Community Dwelling ◽

Care Planning ◽

Care Providers ◽

Advance Care

Abstract In the course of advance care planning (ACP), people may elect any of the following: a living will, a durable power of attorney for health care, and discussions with family members and health care providers. A small proportion of planners complete legal documents without discussing them with others (formal planning only, FPO). If people who have done FPO become incapacitated, their family and health care professionals may lack guidance on how to direct their care. To better understand this group, we drew on four large surveys of community-dwelling adults. Social isolation, measured by living alone and lack of a confidante, increased the odds of FPO across all studies. We also found some evidence that economic disadvantage and depressive symptoms were linked with FPO. We discuss implications for policy and practice, underscoring that ACP is yet another important domain affected by the crisis of social isolation in old age.

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