Advanced care planning: thinking ahead for parents, carers, children, and young people

2018 ◽  
Author(s):  
Angela Thompson
Keyword(s):  
Spiritual Needs ◽  
Care Planning ◽  
Best Interest ◽  
Social Emotional ◽  
Children And Young People ◽  
Adult Services ◽  
Active Approach ◽  
Threatening Condition ◽  
Life Threatening ◽  
Advance Care

Advance care planning (ACP) in paediatrics applies from the diagnosis of a life-limiting/life-threatening condition onwards. It encompasses the management of intermittent potentially reversible episodes through to end-of-life care in keeping with the child’s best interest. It is an active approach to managing care and acknowledges the child’s and family’s broader social, emotional, and spiritual needs and keeps the child central and paramount to all planning. It requires transparent discussions and effectively documented agreements that are well communicated, readily accessible, and immediately identifiable. It is essential to regularly review and amend as necessary. They describe the care agreed at that point in time in the child’s best interest, in line with RCPCH guidance. Challenges may particularly occur at the time of transition to adult services.

The Power of Words: Discussing Decision Making and Prognosis

2013 ◽  
pp. 442-446
Author(s):  
Don S. Dizon ◽  
Mary C. Politi ◽  
Anthony L. Back
Keyword(s):  
Decision Making ◽  
Personalized Medicine ◽  
Treatment Options ◽  
Care Planning ◽  
Shared Decision ◽  
Patient Relationship ◽  
Threatening Condition ◽  
Life Threatening ◽  
Advance Care ◽  
Power Of Words

One of the most important skills in medicine is communication. It lies at the heart of the doctor-patient relationship, and is particularly important when one has been diagnosed with a potentially life-threatening condition. Words are powerful and too often can be interpreted in ways not intended. In our session at the 2013 ASCO Annual Meeting, we discuss the communication of cancer and ways we might want to consider discussions regarding treatment options and prognosis. We recognize that all patients are different and that approaches should be individualized, to reflect each person's needs (what they want to know) while respecting their limits (how much they want to know). We discuss the concept of shared decision making, and how it can be used when there is uncertainty in what treatments may (or may not) accomplish. Finally, we discuss the skills that constitute a toolkit for communication, which we hope can be tailored to meet the variable needs of those we are caring for and by doing so, can be of help to clinicians in their own practices. In the era of personalized medicine, treatments may become more complex, and more options may be available. We hope to encourage providers to welcome patients as active participants in their care by sharing information, requesting their input, and by engaging them in important processes such as advance care planning—to ensure their needs and wishes are respected in the present and for whatever may come in the future.

The implications of the Mental Capacity Act (MCA) 2005 for advance care planning and decision making

2018 ◽  
Author(s):  
Simon Chapman ◽  
Ben Lobo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Best Interest ◽  
Policy And Practice ◽  
Advance Care ◽  
Current Context ◽  
Mental Capacity Act ◽  
End Of Life Decision

This chapter provides an overview of the MCA’s impact on end-of-life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to advance care planning (ACP) and end of life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

Advance care planning: the future

2020 ◽  
pp. bmjspcare-2020-002304
Author(s):  
Judith Rietjens ◽  
Ida Korfage ◽  
Mark Taubert
Keyword(s):  
Advance Care Planning ◽  
Public Awareness ◽  
Care Planning ◽  
Decisional Capacity ◽  
Best Interest ◽  
Awareness Campaigns ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Improve Patient

ObjectivesThere is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.MethodsWe provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity.ResultsDifferent models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia.ConclusionsACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.

scholarly journals Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study

Heart ◽  
2019 ◽  
pp. heartjnl-2019-315721 ◽  
Author(s):  
Rik Stoevelaar ◽  
Arianne Brinkman-Stoppelenburg ◽  
Anne Geert van Driel ◽  
Rozemarijn L van Bruchem-Visser ◽  
Dominic AMJ Theuns ◽  
...  
Keyword(s):  
Focus Groups ◽  
Implantable Cardioverter Defibrillator ◽  
Advance Care Planning ◽  
Comparative Method ◽  
Disease Stage ◽  
Care Planning ◽  
Best Interest ◽  
Focus Group Study ◽  
Cardioverter Defibrillator ◽  
Advance Care

ObjectiveImplantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.MethodsIn this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.ResultsMost patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.ConclusionsAlthough patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.

Engaging College Undergraduates in Advance Care Planning

2016 ◽  
Vol 74 (3) ◽  
pp. 329-344 ◽  
Author(s):  
Sara Sanders ◽  
Erin L. Robinson
Keyword(s):  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Health Care Planning ◽  
Medical Decisions ◽  
Care Plans ◽  
Life Threatening ◽  
Advance Care

Advance care planning (ACP) is a critical part of long-term health-care planning, as no one knows when the ability to make personal medical decisions may be impaired. Many assume ACP is only necessary for older adults or those with life-threatening health conditions; however, there are growing discussions about healthy, young adults also engaging in ACP, as they too suffer from unexpected medical events that limit their ability to make medical decisions. The current study examined the reactions of college students following the completion of their advance care plans and then sharing these plans with friends and family. The students reported that while completing their advance care plans created many emotions, they found the experience to be valuable and facilitated conversations with family and friends about end-of-life care that may not have occurred otherwise.

The Medical Surrogate as Fiduciary Agent

2017 ◽  
Vol 45 (3) ◽  
pp. 402-420
Author(s):  
Dana Howard
Keyword(s):  
Decision Making ◽  
Advance Care Planning ◽  
Care Planning ◽  
Surrogate Decision Making ◽  
Best Interest ◽  
New Approach ◽  
Novel Approach ◽  
Advance Care ◽  
Surrogate Decision

Within bioethics, two prevailing approaches structure how we think about the role of medical surrogates and the decisions that they must make on behalf of incompetent patients. One approach views the surrogate primarily as the patient's agent, obediently enacting the patient's predetermined will. The second approach views the surrogate as the patient's custodian, judging for herself how to best safeguard the patient's interests. This paper argues that both of these approaches idealize away some of the ethically relevant features of advance care planning that make patient preferences so inscrutable and surrogate decision-making so burdensome. It proposes a new approach to surrogate decision-making, the Fiduciary Agency Approach. On this novel approach, the surrogate has authority to not only act on the patient's behalf as the patient's agent but also to decide on the patient's behalf as the patient's fiduciary. One upshot of this new approach is that surrogates must sometimes go against the expressed dictates of the patients' advance directives not necessarily because doing so would be in the patient's best interest but rather because doing so would best represent the patients' will.

scholarly journals Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families

2017 ◽  
Vol 9 (1) ◽  
pp. e22-e22 ◽  
Author(s):  
Maureen E Lyon ◽  
Ronald H Dallas ◽  
Patricia A Garvie ◽  
Megan L Wilkins ◽  
Ana Garcia ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Care Planning ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Paediatric Hospital ◽  
Life Threatening Illness ◽  
Patient Reported ◽  
Registration Number ◽  
Life Threatening ◽  
Advance Care

ObjectivesTo identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family’s perception of their needs.MethodsA cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey – Adolescent and Surrogate Versions-Revised.ResultsAdolescents’ mean age was 18 years (range ≥14–<21); 54% male; 92% African-American; 27% with prior AIDS diagnosis. If dying, 92% believed in completing an advance directive; 85% preferred to die at home;88% knowing how to say good bye; 71% being off machines that extend life and 77% dying a natural death. Best timing for end-of-life (EOL) decisions was while healthy (38%), when first diagnosed (17%), when first sick from a life-threatening illness (4%), when first hospitalised (8%), if dying (4%) and all of the above (19%). Prevalence-adjusted bias-adjusted Kappa (PABAK) measured congruence in pACP needs within adolescent/family dyads. There was substantial congruence in that being free from pain (PABAK=0.83), and understanding your treatment choices (PABAK=0.92) were very important or important. There was discordance about being off machines that extend life (PABAK=0.08) and when is the best time to bring up EOL decisions (PABAK=0.32).ConclusionsAreas of discordance were associated with life-sustaining choices and when to have the EOL conversation. Targeted, adolescent/family-centred, evidence-based pACP interventions are needed to improve family understanding of youth’s EOL wishes.Trial registration numberNCT01289444; Results.

Sign in / Sign up

Export Citation Format

Share Document