Palliative and End of Life Care for Children and Young People

Home, Hospice, Hospital

Anne Grinyer

• Publisher: Wiley-Blackwell
• Year: 2011
• ISBN:
  9781119968320
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

"Anne's contribution to our understanding of the needs of young people with cancer has been unparalleled and without her extraordinary insights our services would be that much poorer."
From the foreword by Simon Davies, CEO Teenage Cancer Trust

This topical and timely text provides valuable insights into the choices and experiences of palliative and end of life care for young people with cancer and other life limiting illnesses. With a focus on palliative care provision across a range of different clinical settings, this comprehensive new resource explores care in the home, the hospice and hospital. It looks at how and where families and young people can access palliative care, and what support is offered to attain their preferred place of death. Bereavement support for families is discussed, as well as a discussion of multidisciplinary work, interagency co-operation and resource issues.

Thistitle isessential reading for community children's nurses, specialist palliative care teams, children's hospices, school nurses, social workers and student nurses as well as families.

• A comprehensive resource on end of palliative are provision for children and young adults with cancer and other life limiting illnesses
• Timely and topical, tying in with the Department of Health palliative care strategy 'Better Care: Better Lives'
• Written in an accessible style that does not assume either detailed medical or theoretical knowledge
• Explores palliative care provision in a range of different clinical settings including the home, hospice, and hospital
• Provides valuable insights into the experiences of parents, children and young people

Chapter 1

Palliative and End of Life Care for Children and Young Adults

The death of a child at any age and from any cause runs against the natural order (Milo 1997); indeed there is something profoundly ‘wrong’ about a child predeceasing its parents. As Sourkes (1977: 65) argues, the ‘assumed sequence’ is thrown out of order; parents who would have expected their children to care for them at the end of life instead find themselves witnessing the ‘tragic absurdity’ of watching their child die.

Although across the world incurable illnesses claim the lives of children on a daily basis, the culture of modern Western society tends to ‘push awareness of these personal tragedies to the back of our minds’ (Riches and Dawson 2000: 9). Death and illness are hidden from view in a society where most acute illness and the majority of deaths are managed out of sight in hospitals and hospices. As a result, family members engaged actively on a daily basis with the care of a child with life-threatening or life-limiting illness can feel isolated in a world hidden from view. Their struggles may remain unobserved and they can find it difficult to access the support needed for the child, siblings and their own welfare.

Benini et al. (2008) define ‘life-limiting’ conditions as those where a premature death is usual and these would include such conditions as Duchenne muscular dystrophy (DMD) and a variety of chromosomal disorders. However, although a ‘life-threatening illness’ carries a high risk of premature death, there is also a chance of the illness being cured and it is usually this term that is applied to cancer diagnoses. According to ACT (2011a), there are at any given time more than 23,000 children with life-limiting or life-threatening illness in the UK, half of whom will have substantial palliative care needs. Approximately 80,000–100,000 family members and carers are involved in the support of these children, whose needs may be complex; thus, in the UK alone there are significant numbers of individuals with the potential to feel alone and isolated. Indeed, almost by definition, the families caring for a child with complex and life-limiting health problems are likely to become socially isolated as a result.

Runswick-Cole (2010: 813) claims that services for children with life-limiting illnesses have been poor, but there has been little research in this area because of what she calls the ‘wider social embarrassment’ of talking about death and the need to distance disability from the ‘tragedy stories’ of the past. Her findings suggest that families experience both social isolation and poverty, lack appropriate support and worry about the costs of care. However, the recent increasing recognition of the challenges faced by both families and professionals caring for a dying child has resulted in a number of policy documents and academic texts – many of which are cited here. What this book adds to a growing body of literature is the voices of the people charged with the care of children, teenagers and young adults whose lives are coming to an end. The following chapters draw upon in-depth interviews with both professionals and family members in order to understand what it is like to care for a child who will die.

The topic of palliative and end of life care for children and young adults is so wide that some boundaries have had to be drawn to structure both the data collection and the remit of this text. Consequently, the book is based mainly on data derived from two studies, one looking at the specific issues relating to cancer in teenagers and young adults, the other an evaluation of children's hospice services. The contrasting experiences of the two cohorts results in some fundamental differences in the nature of the data collected. The use of health care services, the type of services used, the length of time care may be palliative and the transition between palliative and end of life care, may vary considerably according to the type of condition with which a child is diagnosed. This means that the empirical chapters that focus on a particular health care setting reveal very different types of experience and usage within that setting. Not all issues will be relevant to both cohorts, but the contrast becomes part of the analysis.

It is hoped that such a comparison will be beneficial for those planning services by answering such questions as: what are the similarities and differences between children born with a life-limiting condition and young people diagnosed with acute life-threatening illness in adolescence? When do services need to be separate? What are the contrasts in the families’ experiences and needs? In addition, drawing on the accounts of both professionals and families allows the perspectives of each to be heard, and for the complex dynamic that operates in such a highly charged and often distressing context to be better understood. Quotations and case study material from in-depth interviews have been selected to provide examples that give an insight into what it is like to support children and young adults at the end of their lives. The quantity of original qualitative data that acts as the basis for this book amounts to some 400,000 words, thus it is impossible to do justice to each and every transcript, but readers can be secure in the knowledge that, through the process of analysis, the full range of experience has been represented and that claims made in the text are based on a wealth of data that remains largely unobservable. Although individual participants’ stories have been selected to represent the wider data set, I have tried to remain true to the spirit of all those who participated in the research and represent the range of views, opinions and experiences.

The book begins with an overview of the literature and policy in the area and then moves on to present chapters based on the firsthand accounts of the participants. There are chapters on palliative and end of life care as it is experienced in the home, in children's, adult and adolescent hospices and in hospitals. These are followed by a chapter on how parents and professionals manage communications with the children and young people about end of life and how they negotiate the transition from curative to palliative treatment. This chapter also considers the bereavement needs of the parents, how they can best prepare themselves for their loss and how their grief and loss may be shaped by the way in which end of life decisions were made and shared – or not – with their lost children. Drawing on the analysis of the empirical data, the final chapter considers the implications for policy and practice. The appendix includes an account of the methods used to gather the original data on which the empirical chapters are based.

Defining palliative and end of life care

This book addresses both palliative and end of life care. The boundaries between the two may be blurred and some of the young people whose stories are told in this book were in receipt of palliative care while also receiving active treatment; in some cases the palliative phase was brief, in others it continued for years. It would therefore be helpful to define the terms. Clark and Wright (2003) provide a summary of the World Health Organization's (WHO) definition as follows:

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

• Provides relief from pain and other distressing symptoms
• Affirms life and regards dying as a normal process
• Intends neither to hasten nor postpone death
• Integrates the psychological and spiritual aspects of patient care
• Offers a support system to help patients live as actively as possible until death
• Offers a support system to help the family cope during the patient's illness and in their own bereavement
• Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
• Will enhance quality of life, and may also positively influence the course of the illness
• Is applicable early in the course of the illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

(Clark and Wright 2003: 1–2)

This definition makes it clear that palliative care may mean ‘end of life care’ but can also be used in conjunction with active treatments that may prolong life and can be utilised as a strategy early in an illness to relieve suffering. In a slightly different use of terminology Benini et al. (2008) say that although terminal care is not the same as palliative care, palliative care can include terminal care; this distinction they say is crucial as it can establish eligibility criteria in a field where they claim that a minority of children across Europe benefit from palliative care.

The definition of end of life care offered by Kirsti and Dyer (2006) suggests that the precise definition of ‘end of life’ is problematic:

There is no exact definition of end of life; however, research supports the following components:

1. The presence of a chronic disease(s) or symptoms or functional impairments that persist but may also fluctuate; and

2. The symptoms or impairments resulting from the underlying irreversible disease that require formal either paid, professional or informal unpaid or volunteer care and can lead to death.

End of Life Care

End of Life Care is the care provided to a person in their final stages of life. Also known as hospice care, comfort care, supportive care, palliative care or symptom management.

(Kirsti and Dyer 2006)

So it seems from this definition that ‘palliative care’ has been subsumed into ‘end of life care’. Field and Behrman (2003: 34) suggest that ‘end of life care’ has no precise meaning but is used to describe the care that focuses on the preparation for a death that is anticipated. Field and Behrman also say that, together, palliative and end of life care should promote clear and culturally sensitive communication in order to help patients and families understand the diagnosis, prognosis and treatment options available.

Challenges to the delivery of palliative and end of life care for children and young people

This book addresses issues of both palliative and end of life care, thus it encompasses the care that may be given to children and young people with life-threatening and life-limiting illness perhaps for some considerable time before the end of their lives. This is particularly true of the children and young people who have been born with or develop a chronic condition in early childhood. They may in fact use palliative care services for the whole of their lives, whereas, in contrast, the teenagers and young adults (TYAs) diagnosed with cancer will undergo an intensive phase of treatment with the aim of cure. For those TYAs diagnosed with cancer who are not cured, their period of palliative care may be much shorter and raise different issues and challenges.

The European Association of Palliative Care (EAPC 2009) states that although access to palliative care for adults with incurable conditions is regarded as a right, the provision for those in the paediatric age group is still in its early stages and services for children and their families are fragmented and inconsistent. The reasons given for this are that the numbers of eligible children are fewer in comparison to adults, there can be a gap in organisational and managerial policy, a shortage of competent medical staff and cultural issues relating to the care of dying children that affect social acceptance. This is echoed by Price and McFarlane (2009) who say that difficulties arise from the differing needs of children and families, the variation in the availability ...

Table of contents

• Cover
• Title page
• Copyright page
• Dedication
• Participants
• Foreword
• Preface
• Acknowledgements
• Abbreviations
• Chapter 1: Palliative and End of Life Care for Children and Young Adults
• Chapter 2: Home-based Palliative and End of Life Care
• Chapter 3: Hospice-based Palliative and End of Life Care
• Chapter 4: Hospital-based Palliative and End of Life Care
• Chapter 5: Preparation for the End of Life, Bereavement and Emotional Support
• Chapter 6: The Implications for Policy and Practice
• Appendix: Methodology
• References
• Index