Care of children with advanced illness

2021 ◽  
pp. 1035-1045
Author(s):  
Myra Bluebond-Langner ◽  
Richard W. Langner ◽  
Ignasi Clemente
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advanced Illness ◽  
Illness Trajectory ◽  
Paediatric Palliative Care ◽  
Life Threatening ◽  
Decision Making Processes ◽  
Care And Treatment ◽  
Parent Child

Based on the holistic, family-centred approach of paediatric palliative care, this chapter examines specific aspects of the clinician, parent, and child roles in the care and treatment of children and young persons with life-limiting conditions and life-threatening illnesses. In particular, it identifies communication, information, decision-making, and participation preferences of children and young persons with advanced illness and their parents. Within the clinician–parent–child triad, the chapter sets forward suggestions for clinicians on how to manage differences between a child and his or her parents, and more generally, on how to approach the communication and decision-making processes throughout a child’s or young person’s illness trajectory.

Decision-making with children, young people, and parents

2021 ◽  
pp. 36-43
Author(s):  
Myra Bluebond-Langner ◽  
Richard Langner
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Clinical Practice ◽  
Young People ◽  
Decision Maker ◽  
Decision Making Process ◽  
Children And Young People ◽  
Paediatric Palliative Care ◽  
Life Threatening ◽  
Seriously Ill

Support in decision-making is a key part of paediatric palliative care (PPC). In this chapter, we explore some of the salient features of decision-making for seriously ill children and young people (CYP) with life-limiting or life-threatening illnesses and reflect on their implications for clinical practice. We begin with a discussion of two fundamental aspects of decision-making: defining the problem that the decision maker faces and eliciting preferences, goals, and values. We consider what each of the stakeholders—clinician, parent, patient—bring to the decision-making process and their roles in the process. We also address some of the problems and conflicts that can arise and practical approaches to resolving them.

scholarly journals Physicians’ decreased tendency to choose palliative care for patients with advanced dementia between 1999 and 2015

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Saila Haapasalmi ◽  
Reetta P. Piili ◽  
Riina Metsänoja ◽  
Pirkko-Liisa I. Kellokumpu-Lehtinen ◽  
Juho T. Lehto
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Legal Protection ◽  
Postal Survey ◽  
Advanced Dementia ◽  
Background Factors ◽  
Physician Decision Making ◽  
Care Approach ◽  
Life Threatening ◽  
The Impact

Abstract Background Physicians’ decision-making for seriously ill patients with advanced dementia is of high importance, especially as the prevalence of dementia is rising rapidly, and includes many challenging ethical, medical and juridical aspects. We assessed the change in this decision-making over 16 years (from 1999 to 2015) and several background factors influencing physicians’ decision. Methods A postal survey including a hypothetical patient-scenario representing a patient with an advanced dementia and a life-threatening gastrointestinal bleeding was sent to 1182 and 1258 Finnish physicians in 1999 and 2015, respectively. The target groups were general practitioners (GPs), surgeons, internists and oncologists. The respondents were asked to choose between several life-prolonging and palliative care approaches. The influence of physicians’ background factors and attitudes on their decision were assessed. Results The response rate was 56%. A palliative care approach was chosen by 57 and 50% of the physicians in 1999 and 2015, respectively (p = 0.01). This change was statistically significant among GPs (50 vs 40%, p = 0.018) and oncologists (77 vs 56%, p = 0.011). GPs chose a palliative care approach less often than other responders in both years (50 vs. 63% in 1999 and 40 vs. 56% in 2015, p < 0.001). In logistic regression analysis, responding in 2015 and being a GP remained explanatory factors for a lower tendency to choose palliative care. The impact of family’s benefit on the decision-making decreased, whereas the influence of the patient’s benefit and ethical values as well as the patient’s or physician’s legal protection increased from 1999 to 2015. Conclusions Physicians chose a palliative care approach for a patient with advanced dementia and life-threatening bleeding less often in 2015 than in 1999. Specialty, attitudes and other background factors influenced significantly physician decision-making. Education on the identification and palliative care of the patients with late-stage dementia are needed to make these decisions more consistent.

Respecting the autonomy of the living and dying

2020 ◽  
Vol 28 (4) ◽  
pp. 379-385
Author(s):  
Jill Stavert
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Human Rights ◽  
International Human Rights Law ◽  
Advanced Dementia ◽  
Persons With Disabilities ◽  
Content Type ◽  
Care And Support ◽  
Recent Developments ◽  
Care And Treatment

PurposeThe purpose of this study is to inform those who are supporting persons who are dying and are responsible for planning, commissioning or delivering palliative care about the need to support and maximise the decision-making ability and choices of persons with advanced dementia or severe frailty.Design/methodology/approachThis article will consider the legal and human rights principles applicable to Scotland, and indeed to other jurisdictions, which govern decisions about care and treatment of persons with and without capacity and the application of these principles to palliative care situations.FindingsIt is important that those involved in the care and support of the dying are fully aware of the need to support and maximise their decision-making ability concerning palliative care and treatment choices.Research limitations/implicationsIt is a well-established legal and human rights principle that the decisions of a person with capacity must be respected, including decisions about palliative care and treatment at the end of life. Moreover, recent developments in international human rights law reinforce the message that this principle applies equally to all. Applying this principle into persons with advanced dementia or severe frailty therefore requires skilled assessment and supported decision-making in order to optimise capacity and respect autonomy.Originality/valueThe discussion applies the United Nations Convention on the Rights of Persons with Disabilities approach concerning equality of rights enjoyment and supported decision-making to palliative care and treatment situations.

scholarly journals Decision-making dilemmas of paediatricians: a qualitative study in Japan

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e026579
Author(s):  
Momoko Sasazuki ◽  
Yasunari Sakai ◽  
Ryutaro Kira ◽  
Naoko Toda ◽  
Yuko Ichimiya ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Professional Education ◽  
Best Interests ◽  
Complex Structures ◽  
Social Consensus ◽  
Face To Face ◽  
Life Threatening ◽  
Decision Making Processes ◽  
Five Elements

ObjectiveTo delineate the critical decision-making processes that paediatricians apply when treating children with life-threatening conditions and the psychosocial experience of paediatricians involved in such care.DesignWe conducted semistructured, individual face-to-face interviews for each participant from 2014 to 2015. The content of each interview was subjected to a comprehensive qualitative analysis. The categories of dilemma were extracted from a second-round content analysis.ParticipantsParticipants were board-certified paediatricians with sufficient experience in making decisions in relation to children with severe illnesses or disabilities. We repeated purposive sampling and analyses until we reached saturation of the category data.ResultsWe performed interviews with 15 paediatricians. They each reported both unique and overlapping categories of dilemmas that they encountered when making critical decisions. The dilemmas included five types of causal elements: (1) paediatricians’ convictions; (2) the quest for the best interests of patients; (3) the quest for medically appropriate plans; (4) confronting parents and families and (5) socioenvironmental issues. Dilemmas occurred and developed as conflicting interactions among these five elements. We further categorised these five elements into three principal domains: the decision-maker (decider); consensus making among families, colleagues and society (process) and the consequential output of the decision (consequence).ConclusionsThis is the first qualitative study to demonstrate the framework of paediatricians’ decision-making processes and the complex structures of dilemmas they face. Our data indicate the necessity of establishing and implementing an effective support system for paediatricians, such as structured professional education and arguments for creating social consensus that assist them to reach the best plan for the management of severely ill children.

scholarly journals Advances and Challenges in European Paediatric Palliative Care

2020 ◽  
Vol 8 (2) ◽  
pp. 20
Author(s):  
Lorna K Fraser ◽  
Myra Bluebond-Langner ◽  
Julie Ling
Keyword(s):  
Palliative Care ◽  
Epidemiological Data ◽  
Childhood Mortality ◽  
Quality Data ◽  
High Quality Data ◽  
Medical Interventions ◽  
Paediatric Palliative Care ◽  
Life Threatening ◽  
Definition Of ◽  
Limiting Condition

Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children’s palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children’s palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.

scholarly journals Decision-making in paediatric palliative care interpreting

2021 ◽  
Vol 20 ◽  
Author(s):  
Melissa Contreras-Nourse
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Single Case ◽  
Real Life ◽  
Medical Professional ◽  
Biomedical Ethics ◽  
Respect For Autonomy ◽  
Paediatric Palliative Care ◽  
Medical Interpreter

The interpreting profession has long used metaphors or rule statements to describe and teach the ways in which practitioners make decisions (Dean & Pollard, 2011, 2018). Interpreting students are also often taught that the context of an encounter will dictate their decision-making by way of statements such as “it depends”. Such pedagogical statements can make talk between a practitioner and a medical professional about the responsibilities of an interpreter during medical encounters difficult. This study is based on the work of Dean and Pollard (2011, 2018) on value-based decision-making and is guided by the four principles of biomedical ethics (respect for autonomy, non-maleficence, beneficence and justice). It has sought to provide evidence of the existence, applicability and usability of these frameworks through a single case study of a real-life appointment in which a parent of a palliative care outpatient and a medical professional communicated during a consultation, aided by a medical interpreter.

Care of children with advanced illness

2015 ◽  
Author(s):  
John J. Collins ◽  
Kirsty Campbell ◽  
Wendy Edmonds ◽  
Judith Frost ◽  
Martha F. Mherekumombe ◽  
...  
Keyword(s):  
Palliative Care ◽  
Treatment Options ◽  
Geographical Location ◽  
Holistic Approach ◽  
Global Perspective ◽  
World Health ◽  
Spiritual Needs ◽  
Advanced Illness ◽  
Paediatric Palliative Care ◽  
Health Organization

The World Health Organization supports the global application of the principles of palliative care to every child with a life-limiting illness, irrespective of geographical location whilst acknowledging that treatment options are limited in some countries. The care of the child with advanced and progressive illness and their family requires a holistic approach to the often complex physical, social, psychological, and spiritual needs as well as support in bereavement. This inevitably requires a paediatric palliative care team with diverse skills and abilities to meet these needs. This chapter discusses the global perspective of paediatric palliative care and the role of the team, nursing, and volunteers in that care. The significant physical and psychosocial issues for the child with advanced illness are discussed, as well as bereavement support of families. The necessity of quality improvement and strategies for setting up such a programme are outlined.

Paediatric palliative care

2019 ◽  
pp. 477-536
Keyword(s):  
Palliative Care ◽  
Patient Population ◽  
Palliative Medicine ◽  
Survival Rates ◽  
Care Needs ◽  
Paediatric Palliative Care ◽  
Adult World ◽  
Life Threatening ◽  
Palliative Care Needs

This chapter describes the emergence of the field of paediatric palliative care. It looks at the differences between children’s palliative care and the adult world. It goes on to discuss the management of various symptoms looking particularly at the pharmacological approaches that can be used. All dosages are aligned with the Association of Paediatric Palliative Medicine formulary guidelines. Advances in the treatment of life-threatening neonatal and paediatric conditions have dramatically improved survival rates over recent years. One of the most striking reductions in mortality has been achieved for children with malignant conditions, although there remain certain forms of cancer for which the prognosis remains extremely poor. Similarly, despite advances, there is a range of non-malignant conditions which continue to be life-limiting. The patient population in paediatric palliative care is quite different from that encountered in adult practice. Approximately 25–30% of children with palliative care needs have a malignancy.

scholarly journals An Exploratory Qualitative Study of Computer Screening to Support Decision-Making about Use of Palliative Care Registers in Primary Care: GP Think Aloud and Patient and Carer Interviews

2021 ◽  
Vol 12 ◽  
pp. 215013272110244
Author(s):  
Gill Hubbard ◽  
Kirsten Broadfoot ◽  
Clare Carolan ◽  
Hugo C. van Woerden
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Palliative Care ◽  
Clinical Decision Making ◽  
Screening Program ◽  
Clinical Decision ◽  
Think Aloud ◽  
Advanced Illness ◽  
Curative Intent ◽  
Sole Criterion

Objectives: This study aimed to understand factors that influence general practitioner (GP) use of automated computer screening to identify patients for the palliative care register (PCR) and the experiences of palliative care and this emerging technology from patients’ and carers’ perspectives. Methods: A computer screening program electronically searches primary care records in routine clinical practice to identify patients with advanced illness who are not already on a PCR. Five GPs were asked to “think aloud” about adding patients identified by computer screening to the PCR. Key informant interviews with 6 patients on the PCR and 4 carers about their experiences of palliative care while on the PCR and their views of this technology. Data were analyzed thematically. Results and Conclusions: Using computer screening, 29% additional patients were added by GPs to the PCR. GP decision-making for the PCR was informed by clinical factors such as: if being treated with curative intent; having stable or unstable disease; end-stage disease, frailty; the likelihood of dying within the next 12 months; and psychosocial factors such as, age, personality, patient preference and social support. Six (60%) patients/carers did not know that they/their relative was on the PCR. From a patient/carer perspective, having a non-curative illness was not in and of itself sufficient reason for being on the PCR; other factors such as, unstable disease and avoiding pain and suffering were equally if not more, important. Patients and carers considered that computer screening should support but not replace, GP decision-making about the PCR. Computer screening merits ongoing development as a tool to aid clinical decision-making around entry to a PCR, but should not be used as a sole criterion. Care need, irrespective of diagnosis, disease trajectory or prognosis, should determine care.

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