scholarly journals Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

2020 ◽  
Vol 27 (10) ◽  
pp. 1971-1987
Author(s):  
D. Nimmons ◽  
L. Hatter ◽  
N. Davies ◽  
EL Sampson ◽  
K. Walters ◽  
...  
Keyword(s):  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Mixed Methods ◽  
Advance Care Planning ◽  
Care Planning ◽  
Parkinsonian Disorders ◽  
Advance Care ◽  
Atypical Parkinsonian Disorders

How Do Patients With Parkinson’s Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study

2021 ◽  
pp. 089198872098891
Author(s):  
Deepta Churm ◽  
Claire Dickinson ◽  
Louise Robinson ◽  
Paul Paes ◽  
Thomas Cronin ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Mixed Methods ◽  
Advance Care Planning ◽  
Mixed Methods Study ◽  
Care Planning ◽  
Structured Interviews ◽  
The Future ◽  
Explanatory Mixed Methods ◽  
Advance Care

Background: Advance Care Planning (ACP) allows people the opportunity to plan for a time when they may lose capacity. The aim of this study was to determine the extent people with Parkinson’s disease (PD) were aware of ACP, existing plans they held and to explore their own views, as well as their relatives, on planning for the future. Methods: This was a sequential explanatory mixed methods study with a postal quantitative survey to establish awareness and engagement with planning for the future; and qualitative semi-structured interviews to explore the views of people with PD and their relatives on ACP and future plans. Results: 104 questionnaires were analyzed. 76% of respondents had not heard of ACP, while 69% expressed an interest in finding out more about ACP. 78% had a will, and 23% had appointed lasting power of attorneys. All interviewees acknowledged engaging in some aspect of planning. Plans were mostly practical as opposed to health-care related. Interviewees expressed a preference for ACP to be carried out by their PD team, at home, and at a time relevant to their condition. Conclusion: The awareness and understanding of ACP in people with PD is low. While there is desire to be better informed about ACP, this did not translate into desire to engage in ACP. Health professionals should identify people for whom ACP may serve a positive purpose, and proactively address ACP as a continuum with them, while ensuring awareness is raised about ACP, and there is access for who are interested.

Understanding how people with Parkinson’s disease and their relatives approach advance care planning

2021 ◽  
Author(s):  
Deepta Churm ◽  
Claire Dickinson ◽  
Louise Robinson ◽  
Paul Paes ◽  
Thomas Cronin ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care

scholarly journals 46 Promoting Advance Care Planning of Patients with Parkinsonism in the Community

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
C Khuang Lim ◽  
C Miller ◽  
T Jones
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advanced Care Planning ◽  
Do Not Resuscitate ◽  
Community Based ◽  
Care Plans ◽  
Advance Care

Abstract Introduction NICE guideline recommends that all patients with Parkinson’s disease should be reviewed every 6–12 months and offered opportunities to discuss Advanced Care Planning (ACP) (1, 2). There is evidence demonstrating that Advanced Care Plans results in shorter length of stay in the last year of life and lower hospital costs (2, 3). A local baseline audit showed that Advanced Care Planning was not performed adequately. Methods A local baseline audit on community care home patients with Parkinsonism was completed in February 2018. A community-based Parkinson’s clinic was commenced in June 2018. Patients with parkinsonism who were unable to attend hospital clinics due to underlying frailty, neuropsychiatry and physical issues, were reviewed. At each visit, advice was provided on medicines management and there were discussions around Advance Care Planning. A re-audit was completed in August 2019. Patient’s Electronic Patient Records were scrutinised to evaluate progress and identify those who had died. Data was analysed using Microsoft Excel. Results The initiative contributed directly to end of life care in 7/17 patients. Parkinson’s disease medications were rationalised in 11/17 (64.70%). 14/17 (82.35%) had a community-based Do Not Resuscitate order completed. Conclusions The community Parkinson’s clinic service promoted Advance Care Planning in patients with Parkinsonism. This service provides specialist input in frail older people with Parkinsonism who were unable to attend hospital clinic, promoting end of life choices around where they wished to die and avoiding unnecessary hospitalisation in the final stages of their life.

scholarly journals Advance care planning in Parkinson’s disease: ethical challenges and future directions

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leonard L. Sokol ◽  
Michael J. Young ◽  
Jack Paparian ◽  
Benzi M. Kluger ◽  
Hillary D. Lum ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Advance Care Planning ◽  
Care Planning ◽  
Ethical Challenges ◽  
Future Directions ◽  
Disease Trajectory ◽  
Advance Care

AbstractRecent discoveries support the principle that palliative care may improve the quality of life of patients with Parkinson’s disease and those who care for them. Advance care planning, a component of palliative care, provides a vehicle through which patients, families, and clinicians can collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patient wishes. While research on this topic is abundant in other life-limiting disorders, particularly in oncology, there is a paucity of data in Parkinson’s disease and related neurological disorders. We review and critically evaluate current practices on advance care planning through the analyses of three bioethical challenges pertinent to Parkinson’s disease and propose recommendations for each.

scholarly journals ‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study

2021 ◽  
pp. 026921632110158
Author(s):  
Sonja McIlfatrick ◽  
Paul Slater ◽  
Olufikayo Bamidele ◽  
Deborah Muldrew ◽  
Esther Beck ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Focus Group ◽  
Advance Care Planning ◽  
Public Awareness ◽  
Community Action ◽  
Care Plan ◽  
Care Planning ◽  
Knowledge And Attitudes ◽  
Sequential Mixed Methods ◽  
Advance Care

Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/participants: A random representative sample of adults from one region of the United Kingdom ( n = 1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a ‘one size fits all’ approach will not work; rather bespoke targeting is required with educational and media messaging aligned.

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