Physicians’ perceived barriers and proposed solutions for high-quality palliative care in dementia in the Netherlands: Qualitative analysis of survey data

2021 ◽  
pp. 1-9
Author(s):  
L. Bavelaar ◽  
H.T.A. van der Steen ◽  
H. de Jong ◽  
G. Carter ◽  
K. Brazil ◽  
...  
Keyword(s):  
Palliative Care ◽  
The Netherlands ◽  
Advance Care Planning ◽  
Healthcare Professionals ◽  
Elderly Care ◽  
Dementia Care ◽  
Care Planning ◽  
High Quality ◽  
The Public ◽  
Advance Care

Background: The literature indicates that palliative care for people with dementia needs to be enhanced. Objectives: To assess barriers to providing high-quality palliative dementia care and potential solutions to overcome these barriers, as perceived by physicians responsible for end-of-life care with dementia. Design: Cross-sectional study. Setting: The Netherlands. Participants: A representative sample of 311 elderly care physicians of whom 67% (n=207) responded. Measurements: A postal survey in 2013 containing open-ended items probing for barriers in the elderly care physicians’ practices and possible solutions. Answers were coded and grouped using qualitative content analysis and presented to expert physicians in 2021. Results: Barriers to palliative care in dementia were (1) beliefs held by family, healthcare professionals or the public that are not in line with a palliative care approach, (2) obstacles in recognizing and addressing care needs, (3) poor interdisciplinary team approach and consensus, (4) limited use or availability of resources, and (5) poor family support and involvement. Suggested solutions were improving communication and information transfer, and educating healthcare staff, families and the public about palliative care in dementia. Timely and frequent communication with the family, including advance care planning, and more highly skilled nursing staff were also proposed as solutions. Conclusions: The results suggest a strong need for ongoing education for healthcare professionals about palliative dementia care. Strengthening interprofessional collaboration and shared responsibility for advance care planning is also key. Increasing public awareness of the dementia trajectory and the need for a proactive approach call for a broader societal agenda setting.

scholarly journals Advance care planning in dementia: recommendations for healthcare professionals

2019 ◽  
Vol 12 ◽  
pp. 117822421982657 ◽  
Author(s):  
Karen Harrison Dening ◽  
Elizabeth L Sampson ◽  
Kay De Vries
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advance Care Planning ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Family Carers ◽  
Care Approach ◽  
Future Care ◽  
Advance Care ◽  
Person With Dementia

The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

scholarly journals Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services

2020 ◽  
Author(s):  
A Bradshaw ◽  
L. Dunleavy ◽  
C. Walshe ◽  
N. Preston ◽  
R. Cripps ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advance Care Planning ◽  
List Type ◽  
Care Planning ◽  
Specialist Palliative Care ◽  
High Quality ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care

AbstractBackgroundDuring the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them.AimTo describe the challenges experienced, and changes made to support, Advance Care Planning at the height of the COVID-19 pandemic.DesignCross-sectional on-line survey of UK palliative and hospice services’ response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach.Respondents277 UK palliative and hospice care services.Results37.9% of services provided more Advance Care Planning directly. 58.5% provided more support to others. Some challenges to Advance Care Planning pre-dated the pandemic, whilst other were COVID-19 specific or exacerbated by COVID-19. Six themes demonstrated challenges at different levels of the Social Ecological Model, including: complex decision making in the face of a new disease; maintaining a personalised approach; COVID-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support Advance Care Planning, including: adapting local processes and adapting local structures.ConclusionsProfessionals and healthcare providers need to ensure Advance Care Planning is individualised by tailoring it to the values, priorities, and ethnic, cultural, and religious context of each person. Policymakers need to consider carefully how high-quality, person-centred Advance Care Planning can be resourced as a part of standard healthcare ahead of future pandemic waves.Key StatementsWhat is already known about the topic?–An important part of palliative care’s response to COVID-19 is ensuring that Advance Care Planning discussions occur with patients and their care networks–High quality Advance Care Planning is viewed as a process that adopts a holistic, collaborative, and individualised approach–Prior to COVID-19, challenges to Advance Care Planning included time constraints, lack of training, fears of taking away hope, limited resources, and insufficient knowledgeWhat this paper adds?–The COVID-19 pandemic exacerbated already-existing challenges to conducting high-quality, individualised Advance Care Planning, including the ability to maintain a personalised approach and sharing information between services–COVID-specific challenges to Advance Care Planning exist, including the complexities of decision-making for a novel disease, communication issues, and workload pressures–In responding to these challenges, services adapted local processes (prioritising specific components, normalisation and integration into everyday practice) and structures (using technology, shifting resources, collaboration) of careImplications for practice, theory or policy–COVID-19 has provided an opportunity to re-think Advance Care Planning in which the starting point to any discussion is always the values and priorities of patients themselves–Providers and policymakers need to urgently consider how high-quality Advance Care Planning can be resourced and normalised as a part of standard care across the health sector, ahead of future or recurrent pandemic waves and in routine care more generally–We provide questions for health professionals, services, and policy makers to consider in working towards this

Development, Implementation, and Evaluation of an Advance Care Planning Program for Professionals in Palliative Care of People With Intellectual Disability

2021 ◽  
Vol 59 (1) ◽  
pp. 39-54
Author(s):  
Hille Voss ◽  
Anique G.F.M Vogel ◽  
Annemieke M.A Wagemans ◽  
Anneke L. Francke ◽  
Job F.M. Metsemakers ◽  
...  
Keyword(s):  
Palliative Care ◽  
Intellectual Disability ◽  
The Netherlands ◽  
Design Process ◽  
Advance Care Planning ◽  
Care Practice ◽  
Care Planning ◽  
Planning Program ◽  
Information Pack ◽  
Advance Care

Abstract In this article we describe how an advance care planning (ACP) program was developed, implemented, and evaluated. Our aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on 10 competencies needed for ACP and was developed in a co-design process with people with ID, relatives, and professionals. The program was implemented in six ID care organizations in the Netherlands and consisted of an information pack, a training course, and an implementation interview about implementing ACP. Professionals indicated that their competencies had improved, particularly regarding communication and the application of ACP as a standard element in palliative care practice. This program therefore seems helpful in training ID care professionals in the competencies needed for ACP.

End-of-life care in non-malignant conditions

2018 ◽  
Vol 11 (1) ◽  
pp. 41-47
Author(s):  
Rachel Lewis
Keyword(s):  
Palliative Care ◽  
Chronic Disease ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
High Quality ◽  
Advance Care

End-of-life care refers to the care of patients with progressive, incurable conditions and considered to be in the last year of life. Approximately 75% of end-of-life patients will die from non-malignant conditions. There are significant challenges, both in the identification of patients with chronic disease who are nearing the end of life and in the provision of high-quality palliative care in this group. This article explores the role of GPs in the management of end-of-life care in the most common non-malignant conditions, including management of symptoms and advance care planning.

What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals

2019 ◽  
Vol 33 (10) ◽  
pp. 1299-1309 ◽  
Author(s):  
Cheng-Pei Lin ◽  
Catherine J Evans ◽  
Jonathan Koffman ◽  
Shuh-Jen Sheu ◽  
Su-Hsuan Hsu ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Filial Piety ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care

Background: The concept of advance care planning is largely derived from Western countries. However, the decision-making process and drivers for choosing palliative care in non-Western cultures have received little attention. Aim: To explore the decision-making processes and drivers of receiving palliative care in advance care planning discussions from perspectives of advanced cancer patients, families and healthcare professionals in northern Taiwan. Method: Semi-structured qualitative interviews with advanced cancer patients, their families and healthcare professionals independently from inpatient oncology and hospice units. Thematic analysis with analytical rigour enhanced by dual coding and exploration of divergent views. Results: Forty-five participants were interviewed ( n = 15 from each group). Three main decision-making trajectories were identified: (1) ‘choose palliative care’ was associated with patients’ desire to reduce physical suffering from treatments, avoid being a burden to families and society, reduce futile treatments and donate organs to help others; (2) ‘decline palliative care’ was associated with patients weighing up perceived benefits to others as more important than benefits for themselves; and (3) ‘no opportunity to choose palliative care’ was associated with lack of opportunities to discuss potential benefits of palliative care, lack of staff skill in end-of-life communication, and cultural factors, notably filial piety. Conclusion: Choice for palliative care among advanced cancer patients in Taiwan is influenced by three decision-making trajectories. Opinions from families are highly influential, and patients often lack information on palliative care options. Strategies to facilitate decision-making require staff confidence in end-of-life discussions, working with the patients and their family while respecting the influence of filial piety.

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