scholarly journals Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

2019 ◽  
Vol 63 (10) ◽  
pp. 1262-1272 ◽  
Author(s):  
H. Voss ◽  
A. Vogel ◽  
A. M. A. Wagemans ◽  
A. L. Francke ◽  
J. F. M. Metsemakers ◽  
...  
Keyword(s):  
Intellectual Disabilities ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care ◽  
People With Intellectual Disabilities ◽  
Palliative Phase

scholarly journals Advance Care Planning in Palliative Care for People With Intellectual Disabilities: A Systematic Review

2017 ◽  
Vol 54 (6) ◽  
pp. 938-960.e1 ◽  
Author(s):  
Hille Voss ◽  
Anique Vogel ◽  
Annemieke M.A. Wagemans ◽  
Anneke L. Francke ◽  
Job F.M. Metsemakers ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Intellectual Disabilities ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care ◽  
People With Intellectual Disabilities

Advance Care Planning for Persons with Intellectual Disabilities

GeroPsych ◽  
2018 ◽  
Vol 31 (2) ◽  
pp. 87-95 ◽  
Author(s):  
Monika T. Wicki
Keyword(s):  
Decision Making ◽  
Intellectual Disabilities ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
End Of Life Decisions ◽  
Percent Agreement ◽  
Decision Making Capacity ◽  
Advance Care ◽  
Life Decisions

Abstract. As people live longer, they become more likely to die from prolonged, incurable, chronic illnesses occurring more frequently in old age. This study explores the usefulness, quality, and reliability of documented advance care planning interviews to determine the decision-making capacity of persons with intellectual disabilities (IDs). A volunteer sample of 60 persons rated the capacity to consent to treatment of four persons deciding on two end-of-life decisions. Sensitivity, specificity, and percent agreement were calculated. Interrater reliability was assessed using Fleiss’ κ and Krippendorff’s α. A Yates’ corrected χ2 was used to analyze differences in ratings between groups of raters. The sensitivity value was 62%; the specificity value was 95%. The percent agreement for all participants was 70%, Fleiss’ κ was 0.396, and Krippendorff’s α was 0.395. Of the participants, 72 found documented advance care planning discussions useful for diagnosing the decision-making capacity of people with IDs. The documented interviews helped to identify those persons with IDs who had the decision-making capacity. Documented interviews on end-of-life decisions could make a valuable contribution to fostering their self-determination in end-of-life issues.

Advance care planning for patients with cancer in the palliative phase in Dutch general practices

2018 ◽  
Vol 36 (5) ◽  
pp. 587-593 ◽  
Author(s):  
Daisy J M Ermers ◽  
Karin J H van Bussel ◽  
Marieke Perry ◽  
Yvonne Engels ◽  
Henk J Schers
Keyword(s):  
Advance Care Planning ◽  
Daily Practice ◽  
Health Care Use ◽  
Care Planning ◽  
Electronic Patient Records ◽  
Medical Interventions ◽  
Patients With Cancer ◽  
Advance Care ◽  
General Practices ◽  
Palliative Phase

Abstract Background Advance care planning (ACP) is a crucial element of palliative care. It improves the quality of end-of-life care and reduces aggressive and needless life-prolonging medical interventions. However, little is known about its application in daily practice. This study aims to examine the application of ACP for patients with cancer in general practice. Methods We performed a retrospective cohort study in 11 general practices in the Netherlands. Electronic patient records (EPRs) of deceased patients with colorectal or lung cancer were analysed. Data on ACP documentation, correspondence between medical specialist and GP, and health care use in the last year of life were extracted. Results Records of 163 deceased patients were analysed. In 74% of the records, one or more ACP items were registered. GPs especially documented patients’ preferences for euthanasia (58%), palliative sedation (46%) and preferred place of death (26%). Per patient, GPs received on average six letters from medical specialists. These letters mainly contained information regarding medical treatment and rarely ACP items. In the last year of life, patients contacted the GP over 30 times, and 51% visited the emergency department at least once, of whom 54% in the last month. Conclusions Registration of ACP items in GPs’ EPRs appeared to be limited. ACP elements were rarely subject of communication between primary and secondary care, which may impact the continuity of patient care during the last year of life. More emphasis on registration of ACP items and better exchange of information regarding patients’ preferences are needed.

P-49 Advance care planning for persons with severe intellectual disabilities: A case report

2015 ◽  
Vol 5 (Suppl 2) ◽  
pp. A58.2-A58 ◽  
Author(s):  
C Blay Pueyo ◽  
N Camprodon Tuneu ◽  
A Brunet Gómez ◽  
M Codinachs Vila ◽  
L Mayenco Carrascosa ◽  
...  
Keyword(s):  
Case Report ◽  
Intellectual Disabilities ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care ◽  
Severe Intellectual Disabilities

Demenz aus palliativmedizinischer Perspektive: warum ein krankheitsspezifisches Advance Care Planning wichtig ist

2018 ◽  
Vol 75 (2) ◽  
pp. 105-111 ◽  
Author(s):  
Ralf J. Jox ◽  
Francesca Bosisio ◽  
Eve Rubli Truchard
Keyword(s):  
Palliative Care ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care ◽  
Menschen Mit Demenz

Zusammenfassung. Die Palliative Care muss sich im Zuge des demographischen Wandels vieler Gesellschaften rund um den Globus tiefgreifend wandeln. Sie muss mehr und mehr mit der Geriatrie zusammenarbeiten und geriatrische Expertise integrieren. Eine der zentralen Herausforderungen Geriatrischer Palliative Care ist die ethisch angemessene Therapieentscheidung für Menschen, die nicht mehr urteilsfähig sind. Nachdem der bisherige Ansatz herkömmlicher Patientenverfügungen erwiesenermassen enttäuscht hat, wird aktuell, gerade auch in deutschsprachigen Ländern, das systemische Konzept des Advance Care Planning (ACP) verfolgt. In diesem Artikel wird zunächst ACP mit seinen Zielen, Elementen und Effekten vorgestellt. Sodann wird gezeigt, weshalb es für Menschen mit Demenz eines adaptierten ACP-Programms bedarf und was ein solches demenzspezifisches ACP beinhalten muss.

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