scholarly journals O-23 Views and experiences of young people, parents/carers and professionals of advance care planning

Author(s):  
Ben Hughes ◽  
Katherine Knighting ◽  
Mary O’Brien ◽  
Anita Flynn
2014 ◽  
Vol 100 (4) ◽  
pp. 380-385 ◽  
Author(s):  
Karen A Horridge

Increasing numbers, complexities and technology dependencies of children and young people with life-limiting conditions require paediatricians to be well prepared to meet their changing needs. Paediatric Advance Care Planning provides a framework for paediatricians, families and their multidisciplinary teams to consider, reflect and record the outcome of their conversations about what might happen in the future in order to optimise quality of clinical care and inform decision-making. For some children and young people this will include discussions about the possibility of death in childhood. This may be unexpected and sudden, in the context of an otherwise active management plan or may be expected and necessitate discussions about the process of dying and attention to symptoms. Decision-making about appropriate levels of intervention must take place within a legal and ethical framework, recognising that the UK Equality Act (2010) protects the rights of disabled children and young people and infants and children of all ages to the same high quality healthcare as anyone else.


2015 ◽  
Vol 29 (4) ◽  
pp. 371-379 ◽  
Author(s):  
Sarah Mitchell ◽  
Jeremy Dale

Background: The majority of children and young people who die in the United Kingdom have pre-existing life-limiting illness. Currently, most such deaths occur in hospital, most frequently within the intensive care environment. Aim: To explore the experiences of senior medical and nursing staff regarding the challenges associated with Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit environment and opportunities for improvement. Design: Qualitative one-to-one, semi-structured interviews were conducted with Paediatric Intensive Care Unit consultants and senior nurses, to gain rich, contextual data. Thematic content analysis was carried out. Setting/participants: UK tertiary referral centre Paediatric Intensive Care Unit. Eight Paediatric Intensive Care Unit consultants and six senior nurses participated. Findings: Four main themes emerged: recognition of an illness as ‘life-limiting’; Advance Care Planning as a multi-disciplinary, structured process; the value of Advance Care Planning and adverse consequences of inadequate Advance Care Planning. Potential benefits of Advance Care Planning include providing the opportunity to make decisions regarding end-of-life care in a timely fashion and in partnership with patients, where possible, and their families. Barriers to the process include the recognition of the life-limiting nature of an illness and gaining consensus of medical opinion. Organisational improvements towards earlier recognition of life-limiting illness and subsequent Advance Care Planning were recommended, including education and training, as well as the need for wider societal debate. Conclusions: Advance Care Planning for children and young people with life-limiting conditions has the potential to improve care for patients and their families, providing the opportunity to make decisions based on clear information at an appropriate time, and avoid potentially harmful intensive clinical interventions at the end of life.


2018 ◽  
Vol 32 (7) ◽  
pp. 1147-1166 ◽  
Author(s):  
Ben Hughes ◽  
Mary R O’Brien ◽  
Anita Flynn ◽  
Katherine Knighting

2018 ◽  
Vol 75 (2) ◽  
pp. 105-111 ◽  
Author(s):  
Ralf J. Jox ◽  
Francesca Bosisio ◽  
Eve Rubli Truchard

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.


Praxis ◽  
2017 ◽  
Vol 106 (25) ◽  
pp. 1369-1375 ◽  
Author(s):  
Barbara Loupatatzis ◽  
Tanja Krones

Zusammenfassung. Advance Care Planning ist ein begleiteter, strukturierter Prozess, der es Patienten und ihren Angehörigen ermöglicht, sich mit ihren Einstellungen zu Leben und Sterben sowie möglichen Behandlungen für den Fall einer Urteilsunfähigkeit mit Hilfe eines ausgebildeten Beraters auseinander zu setzen. Das Konzept kombiniert die individuelle Beratung des Patienten mit einem regionalen, systemischen Ansatz, der sicherstellt, dass alle Beteiligten die verwendeten Dokumente kennen und auch in einer Notfallsituation korrekt anwenden können. Ziel ist es, die Behandlung von urteilsunfähigen Patienten besser im Sinne ihrer Wünsche und Bedürfnisse zu koordinieren und dadurch die Patientenautonomie zu stärken.


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