End of life planning in parkinsonian diseases

Gillard, Danielle M.; Proudfoot, James; Simões, Rita Moiron; Litvan, Irene

doi:10.1016/j.parkreldis.2019.01.026

Cited by 9 publications

(12 citation statements)

References 20 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Findings were grouped into five themes: What is discussed? Advance care planning discussions involved a range of topics and terms (Appendix C), including advance directives [14,26,38], advanced decisions [30] and living wills (the individual writes wishes for end-of-life care in the event that they become unable to communicate decisions) [14,38,40], medical orders (standardized forms that address major healthcare decisions), e.g. on cardiopulmonary resuscitation (CPR) [14,15,29,40,42], ventilation [15,40], intensive care unit [15], nutrition/ artificial feeding [6,14,15,40], symptom control [7,14,15,37], hydration [37], preferred place of death [14,15,37], respite [7,24,34] and power of attorney/ healthcare proxy [14,38].…”

Section: Synthesis Of Resultsmentioning

confidence: 99%

“…A diagnosis of atypical parkinsonian disorder was more often reported as a trigger to discuss ACP [6,38]. These patients experience rapidly progressive symptoms compared to people with PD, and have been reported to be more informed about prognosis and ACP [6].…”

Section: Synthesis Of Resultsmentioning

confidence: 99%

“…They were published after the date of our electronic search and included after screening for relevance. A total of 27 studies were included, of which 15 were qualitative [5][6][7][23][24][25][26][27][28][29][30][31][32][33][34] and 12 were quantitative [14,15,[35][36][37][38][39][40][41][42][43][44].…”

Section: Data Extraction and Synthesismentioning

confidence: 99%

“…Four studies focused on atypical parkinsonian disorders [6,7,37,38]. One addressed ACP from the perspective of patients, carers and HCPs [7], two from the perspective of patients and carers [6,38] and one exclusively covered patients with multiple system atrophy [37]. Similar challenges were found in atypical parkinsonian disorders as in PD, including the perception of unmet need and a lack of standardization in the approach to ACP.…”

Section: Comparison Between Parkinson's Disease and Atypical Parkinsomentioning

confidence: 99%

See 3 more Smart Citations

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

Nimmons¹,

Hatter²,

Davies³

et al. 2020

Euro J of Neurology

View full text Add to dashboard Cite

Background and purpose Advance care planning allows people to plan for their future care needs and can include medical, psychological and social aspects. However, little is known on the use, experience of and attitudes towards advance care planning in patients with parkinsonian disorders, their family carers and healthcare professionals. Methods A systematic search of online databases was conducted in April 2019 using a narrative synthesis approach with thematic analysis and tabulation to synthesize the findings. Results In all, 507 articles were identified and 27 were included. There were five overarching themes: (i) what is involved in advance care planning discussions, (ii) when and how advance care planning discussions are initiated, (iii) barriers to advance care planning, (iv) the role of healthcare professionals and (v) the role of the family carer. This evidence was used to highlight eight effective components to support optimal advance care planning in parkinsonian disorders: advance care planning discussions should be individualized in content, timing and approach; patients should be invited to discuss advance care planning early and regularly; palliative care services should be introduced early; a skilled professional should deliver advance care planning; support to family carers should be offered in the advance care planning process; healthcare professionals should be educated on parkinsonian disorders and palliative care; advance care planning should be clearly documented and shared with relevant services; and healthcare professionals should be enabled to conduct effective advance care planning. Conclusions These components can inform best practice in advance care planning in patients with parkinsonian disorders.

show abstract

Section: Synthesis Of Resultsmentioning

confidence: 99%

Section: Synthesis Of Resultsmentioning

confidence: 99%

Section: Data Extraction and Synthesismentioning

confidence: 99%

Section: Comparison Between Parkinson's Disease and Atypical Parkinsomentioning

confidence: 99%

See 2 more Smart Citations

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

Nimmons¹,

Hatter²,

Davies³

et al. 2020

Euro J of Neurology

View full text Add to dashboard Cite

show abstract

“…In Kentucky, the rate of completion of living wills is 64%, unrelated to disease severity, and comparable to patients without PD. 8 In Colorado and Florida, AD completion is 56% and 82%, respectively. 9,10 In South Korea, despite a discussion prevalence of 71%, AD completion is only 27%.…”

Section: Introductionmentioning

confidence: 99%

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

Sokol

Young

Paparian

et al. 2019

npj Parkinsons Dis.

View full text Add to dashboard Cite

Recent 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.

show abstract

Neurological update: the palliative care landscape for atypical parkinsonian syndromes

et al. 2023

View full text Add to dashboard Cite

End of life planning in parkinsonian diseases

Cited by 9 publications

References 20 publications

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

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

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

Neurological update: the palliative care landscape for atypical parkinsonian syndromes

Contact Info

Product

Resources

About