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Ethics in Child Health > Ethics in Child Health – Chapter 17: Service provision for hard-to-reach families (ebook)
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Ethics in Child Health – Chapter 17: Service provision for hard-to-reach families (ebook)

This chapter is part of Ethics in Child Health

Principles and Cases in Neurodisability

Product Type: PDF (Sub-Section of Book)

Michelle Phoenix (Author), Peter L Rosenbaum, Gabriel M Ronen and Eric Racine (Editors), Jennifer Johannesen and Bernard Dan (Editors)

Series: Mac Keith Press

Edition: 1st

Publication date: September 2016

Page count: 10

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Chapter 17 of the book – Service provision for hard-to-reach families: what are our responsibilities?

Ethical challenges can emerge when clinical policies within an agency with decision-making responsibility – such as a community-based facility or government-run program – appear to conflict with the best intentions of the front-line service providers. Phoenix addresses these issues in a compelling story of the conflict created for her and her colleagues when a standard policy about families’ missed appointments came up against the clinicians’ awareness of and sensitivity to the stresses on a family that accounted for this apparent delinquency. The clinicians were caught in a dilemma that led to a no-win situation – at least for the immediate issue – and caused discomfort for most of the players.

About the complete book

Have you ever:

  • Wondered how to deal with a family that repeatedly fails to keep clinic appointments?
  • Disagreed with colleagues over a proposed course of treatment for a child?
  • Considered ways to ‘bump’ a child on a waiting to speed up their assessment?

These are a few of the scenarios faced by clinicians in neurodisability on a daily basis. Ethics in Child Health explores the ethical dimensions of these issues that have either been ignored or not recognised. Each chapter is built around a scenario familiar to clinicians and is discussed with respect to how ethical principles can be utilised to inform decision-making. Useful ‘Themes for Discussion’ are provided at the end of each chapter to help professionals and students develop practical ethical thinking. Ethics in Child Health offers a set of principles that clinicians, social workers and policy-makers can utilise in their respective spheres of influence.

 

Readership: clinicians and paediatricians in neurodisability, service providers in neurodisability, community-based health professionals,  and health policy makers.

Michelle Phoenix (Author)
Peter L Rosenbaum, Gabriel M Ronen and Eric Racine (Editors)

Peter Rosenbaum is Professor of Paediatrics at McMaster University and the CanChild Centre for Childhood Disability Research, Ontario Canada. He is a developmental paediatrician with over 40 years’ experience of clinical, health services research and educational activities in the field of childhood disability. His passion has been to move the paradigms in childhood disability beyond a preoccupation with impairments to focus on child and family development and function.

Gabriel Ronen is Professor of Paediatrics at McMaster University and McMaster University Children’s Hospital, Ontario, Canada. He is a paediatric neurologist, clinician, researcher and educator. The emphasis of his work has been on how patients’ reports of their lives can and should influence healthcare.

Eric Racine  is Director of the Neuroethics Research Unit, Associate Research Professor and Associate Director, Academic Affairs of the  Institut de recherches cliniques de Montréal, Quebec, Canada. His work aims to bring ethical deliberation to clinical and research practices and knowledge with the ultimate goal of improving patient care. He is known for leading several national and international task forces on a range of ethical problems as well as extensive pioneering contributions to the study of practical ethical problems in neurology and psychiatry.

Jennifer Johannesen and Bernard Dan (Editors)

Jennifer Johannesen  is an author, writer and speaker about ethics in healthcare from a patient/family perspective that includes issues of consent, autonomy and substitute decision-making. Ms Johannesen draws on her experience as the parent of a child with multiple severe disabilities (who died at the age of 12) to help educate and inform health professions about family perspectives in healthcare.

Bernard Dan is a pediatric neurologist, based in Belgium.  He is Editor in Chief of Developmental Medicine and Child Neurology.

  • From the complete book:
  • Foreword
  • Introduction
  • SECTION A: SETTING THE STAGE: ATTUNING MORAL AND ETHICAL THINKING
  • Chapter 1. A Parent’s Perspective on Everyday Ethics. Jennifer Johannesen
  • Chapter 2 Present-Day Health and Neurodevelopmental Disability. Peter L Rosenbaum and Gabriel M Ronen with BJ Cunningham
  • Chapter 3 Can moral problems of everyday clinical practice ever be resolved? A proposal for integrative pragmatist approaches. Eric Racine
  • SECTION B
  • EARLY DAYS, THE START OF THE DIFFERENT DEVELOPMENTAL JOURNEY
  • Chapter 4 Prenatal Consultation: Ethical Challenges and Proposed Solutions. Jennifer Cobelli Kett, Hannah M. Tully, and Daniel A. Doherty
  • Chapter 5 Evidence-based neonatal neurology: Decision-making in conditions of medical uncertainty. Isabelle Chouinard, Eric Racine, Pia Wintermark
  • Chapter 6 “Best Interest” Decision Making: The Importance of Beliefs and Relationships in the Process. Howard Needelman and David Sweeney
  • Chapter 7 Humanism in the Practice of Neurodevelopmental Disability. Garey Noritz.
  • Chapter 8 Truth with hope: Ethical challenges in disclosing ‘bad’ diagnostic, prognostic and intervention information. Iona Novak, Marelle Thornton, Cathy Morgan, Petra Karlsson, Hayley Smithers-Sheedy, Nadia Badawi
  • SECTION C
  • ETHICAL ISSUES IN ADDRESSING FAMILIES’ PRIORITIES
  • Chapter 9 Different perspectives, different priorities: Clinician, patient and family finding a path ahead together. Dinah Susan Reddihough and Jane Tracy
  • Chapter 10. The Importance of Patients’ and Families’ Narratives: Developing a Philosophy of Care to Support Patient/Family Goals. Jean C. Kunz Stansbury and Scott Schwantes
  • Chapter 11. The ethics of patient advocacy: Bending the Rules on Behalf of Patients. Raymond Tervo and Paul J. Wojda
  • Chapter 12. Responding to requests for novel/unproven alternative and complementary treatments. Edward Albert Hurvitz and Garey Noritz
  • Chapter 13. A Miracle Cure for Neurological Impairment: Balancing Hype and Hope for Parents and Patients. Paul C. Mann, Russell P. Saneto and Sidney M. Gospe, Jr
  • SECTION D RESPECTING SOCIAL AND CULTURAL VALUES
  • Chapter 14. Terminology in neurodevelopmental disability: Is using stigmatizing language harmful? Lisa Samson-Fang
  • Chapter 15. Everyday Ethics in Rwanda: Perspectives on hope, fatigue, death and regrowth. Emily Esmaili and Christian Ntizimira
  • Chapter 16. When Expectations Diverge: Addressing our Cultural Differences Differently. Laura S. Funkhouser (with Suzanne Linett)
  • Chapter 17. Service provision for hard-to-reach families: What are our responsibilities? Michelle Phoenix
  • Chapter 18. The Obligation to Report Child Abuse/Neglect is More Complex Than It Seems. Lucyna M Lach and Rachel Birnbaum
  • Chapter 19. The Dilemmas for Siblings of Children with Disabilities: Personal Reflections on Ethical Challenges. Peter Blasco
  • Chapter 20. Paying attention to parental mental health: Is this our responsibility? Dinah Susan Reddihough and Elise Davis
  • SECTION E THERAPIES, REHABILITATION AND INTERVENTIONS
  • Chapter 21. Tensions regarding the processes associated with decision-making about intervention. Lora Woo, Eunice Shen and Elizabeth Russel
  • Chapter 22. “Can’t You Just Do Therapy?” When there is Disagreement About Discharge From Therapy. Janey McGeary Farber, and Harriet Fain-Tvedt
  • Chapter 23. Concurrent therapy treatment in pediatric rehabilitation. Marilyn Wright, Sandra Gaik and Kathleen Dekker
  • Chapter 24. Ethical Considerations regarding Surgical Treatment of Severe Scoliosis in Children with Cerebral Palsy. M. Wade Shrader
  • SECTION F ETHICAL ISSUES IN SPECIFIC CONDITIONS AND CONTEXTS
  • Chapter 25. Considering Best Interest, Quality of Life, Autonomy and Personhood in the ICU. Michael A Clarke
  • Chapter 26. How much is too much care? Interventions and life support in profoundly impaired children with life-threatening conditions. Christopher Newman and Eric B Zurbrugg
  • Chapter 27. Discussing Sudden Unexpected Death In Newly Diagnosed Epilepsy. James Reese, Jr, Philip Pearl.
  • Chapter 28. Ethical challenges of diagnosing FASD: When diagnosis is ‘socio-political’. Ilona Autti-Rämö
  • SECTION G EMERGING INDEPENDENCE AND PREPARING FOR ADULTHOOD
  • Chapter 29. Growth and pubertal manipulation in young people with neurodisabilities: What are the ethical implications? Constantine Samaan
  • Chapter 30. Ethical Challenges in providing transitional care for young people with a developmental disability Jan Willem Gorter and Barbara Gibson
  • Chapter 31 Conservatorship in Emerging Adults: Ethical and Legal Considerations. Henry G. Chambers
  • Epilogue
  • Looking Back to the Future. Bernard Dan

A free sample from the book is available here to download:

Rosenbaum Ethics Introductory Material

Click here to see two of the Editors, Peter Rosenbaum and Bernard Dan, discussing the development of the book, and what they hope to achieve with its publication.

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