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

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Lisbeth Thoresen ◽  
Reidar Pedersen ◽  
Lillian Lillemoen ◽  
Elisabeth Gjerberg ◽  
Reidun Førde

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.

2018 ◽  
Vol 17 (1) ◽  
Author(s):  
Barbara A. Jack ◽  
Tracy K. Mitchell ◽  
Mary R. O’Brien ◽  
Sergio A. Silverio ◽  
Katherine Knighting

2018 ◽  
Vol 5 (1) ◽  
Author(s):  
Kate Grundy ◽  
Jane Goodwin ◽  
Elaine McLardy

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. 


Dementia ◽  
2015 ◽  
Vol 16 (4) ◽  
pp. 486-512 ◽  
Author(s):  
Esther-Ruth Beck ◽  
Sonja McIlfatrick ◽  
Felicity Hasson ◽  
Gerry Leavey

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.


10.2196/15578 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e15578 ◽  
Author(s):  
Doris van der Smissen ◽  
Anouk Overbeek ◽  
Sandra van Dulmen ◽  
Lisette van Gemert-Pijnen ◽  
Agnes van der Heide ◽  
...  

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.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S425-S426
Author(s):  
Kathrin Boerner ◽  
Deborah Carr ◽  
Katherine M Ornstein ◽  
Sara Moorman

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.


2008 ◽  
Vol 6 (1) ◽  
pp. 21-27 ◽  
Author(s):  
Kimberly S. Reynolds ◽  
Laura C. Hanson ◽  
Martha Henderson ◽  
Karen E. Steinhauser

ABSTRACTObjective:One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institutional settings.Methods:We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care—advance care planning and pain management—and on residents' demographic and health status variables. Analyses tested for differences by race and age.Results:White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race.Significance of results:To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Trygve Johannes L. Sævareid ◽  
Reidar Pedersen ◽  
Morten Magelssen

Abstract Background Authorities recommend advance care planning and public acceptance of it is a prerequisite for widespread implementation. Therefore, we did the first study of the Norwegian public with an aim of getting knowledge on their attitudes to issues related to advance care planning. Methods An electronic survey to a nationally representative web panel of Norwegian adults. Results From 1035 complete responses (response rate 40.7%), we found that more than nine out of ten of the general public wanted to participate in advance care planning, believed it to be useful for many, and wanted to make important healthcare decisions themselves. Almost nine out of ten wanted to be accompanied by next of kin during advance care planning. Most (69%) wanted health care personnel to initiate advance care planning and preferred it to be timed to serious illness with limited lifetime (68%). Only about 9% stated that health care personnel should have the final say in healthcare decisions in serious illness. Conclusions Developing and implementing advance care planning as a public health initiative seems warranted based on the results of this study. Patient perspectives should be promoted in decision-making processes. Nevertheless, training of health care personnel should emphasise voluntariness and an individual approach to initiating, timing and conducting advance care planning because of individual variations.


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