Paediatric palliative care: challenges and emerging ideas

doi:10.1016/S0140-6736(07)61203-3

The Lancet

Volume 371, Issue 9615, 8–14 March 2008, Pages 852-864

https://doi.org/10.1016/S0140-6736(07)61203-3 Get rights and content

Summary

Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to: clearly define the population served; better understand the needs of children with life-threatening conditions and their families; develop an approach that will be appropriate across different communities; provide care that responds adequately to suffering; advance strategies that support caregivers and health-care providers; and promote needed change by cultivating educational programmes. Despite these challenges, advances in paediatric palliative care have been achieved in a short period of time; we expect far greater progress as the field becomes more formalised and research networks are established.

Introduction

Paediatric palliative care (PPC) is focused on ensuring the best possible quality of life for children whose illness makes it likely that they will not live to become adults. Such care includes the family and extends into the domains of physical, psychological, social, and spiritual wellbeing. The frequency and circumstances of childhood mortality are geographically and socio-economically dependent, with some children having full access to the newest and costliest treatments and others little access to even basic medical care, food, and clean water. Applying the principles of PPC to a particular child and their family will thus vary depending on the availability of local resources and training. While recognising the need to improve access for the many children worldwide that lack basic medical care, we contend that all children facing the possibility of death would benefit from the application of basic, low-cost principles of PPC. We review six challenges in the field of PPC.

Section snippets

Challenge 1: Defining PPC

While different definitions of PPC have been published,1, 2, 3, 4, 5, 6, 7 the challenge remains to create a definition that is relevant across cultures and nations. The WHO definition provides a good starting point in encompassing the needs of children with life-threatening illnesses and conditions worldwide (panel 1).⁴ Differences of opinion exist about whether the term “life-threatening” (where a cure is possible) or the term “life-limiting” (no realistic hope of cure) is more appropriate

Challenge 2: Better understanding the needs of PPC

There is little outcome data about the needs and effectiveness of many PPC interventions—most existing publications are descriptive. Reasons for the lack of outcome data include the small number of children eligible to be studied in any one institution, the lack of standardised measurement scores for pain and quality of life in young children, and the fact that the need for such research in PPC has only been recognised in the past few years.²² Despite the limitations of research-derived data to

Challenge 3: Integrating culture and spirituality into palliative care

There are serious concerns about whether the core principles of palliative care, initially developed in the UK and USA as a response to an increased institutionalisation of the dying, represent the values of different cultures.⁶⁵ Core principles involve: (1) open disclosure and honesty; (2) patients' autonomy through their active participation in decision-making; and (3) open expression of feelings, concerns, and needs to be able to work through unfinished business, ensure quality of life, and

Challenge 4: Reducing suffering, and promoting hope and healing

Adult palliative care research on suffering,94, 95 hope,⁹⁶ and healing⁹⁷ has much to offer both in how to better care for children and their families as well as in how to support and sustain PPC health-care professionals in their work.

Challenge 5: Acknowledging professionals' responses and need for support

Caring for children with life-limiting conditions, their family, friends, and peers, is highly stressful, yet can also be very rewarding.102, 103, 104, 105, 106 Even though little is known about how health-care professionals cope with the challenges of PPC, studies suggest that they are at risk for developing compassion fatigue and burnout.102, 103, 104, 105, 106, 107, 108, 109, 110, 111 Some common stressors, reported by American, Canadian, Greek, Chinese, and Israeli health-care providers103,

Challenge 6: Integrating knowledge of PPC into basic curricula and training programmes

A major challenge in PPC is to integrate growing knowledge into educational programmes in medicine, nursing, and allied disciplines. Surveys undertaken in the USA, Canada, and the UK and other countries in western Europe124, 125, 126, 127, 128, 129, 130, 131, 132 indicate that education in palliative care, especially in bereavement care, remains sporadic and fragmented.¹³³ Faculty members say they feel unprepared to teach key components of end-of-life care, while medical students report a lack

Conclusion

There remain many more questions than answers about how to best care for children who will probably die before adulthood. An example of such basic questions include: how to best control physical symptoms such as pain and fatigue; how to communicate with children and appropriately involve them in decisionmaking; how to ensure that invasive efforts to prolong life in intensive-care units do not inadvertently increase suffering and prolong dying instead of living; and how to provide care that

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To examine the impact of home-based SPPC in children and adolescents with life-limiting conditions, regarding place of death, quality of life and symptom burden.
We searched Medline, EMBASE, CINAHL, PsycINFO, the Cochrane Central Register of Controlled Trials, Web of Science and Scopus for studies comparing children and adolescents with life-limiting conditions receiving home-based SPPC with children and adolescents not receiving home-based SPPC, or studies reporting before-and-after measurements. We included studies that reported on place of death, quality of life and/or symptoms. Two authors independently screened the articles, extracted data, and assessed quality. Results were synthesized as a systematic narrative synthesis and meta-analysis, using a random-effects model.
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Citation Excerpt :
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ReviewPaediatric palliative care: challenges and emerging ideas

Summary

Introduction

Section snippets

Challenge 1: Defining PPC

Challenge 2: Better understanding the needs of PPC

Challenge 3: Integrating culture and spirituality into palliative care

Challenge 4: Reducing suffering, and promoting hope and healing

Challenge 5: Acknowledging professionals' responses and need for support

Challenge 6: Integrating knowledge of PPC into basic curricula and training programmes

Conclusion

Child Adolesc Psychiatr Clin N Am

J Pain Symptom Manage

J Pain Symptom Manage

J Pain Symptom Manage

J Pain Symptom Manage

Lancet

J Pediatr Nurs

Health Pol

Soc Sci Med

Lancet

Soc Sci Med

J Pediatr

Committee on Palliative and End-of-Life Care for Children and Their Families

When children die: improving palliative and end-of-life care for children and their families

Pediatric palliative care: building the model, bridging the gaps

J Palliat Care

Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities

Pediatrics

Definition of Palliative Care for Children

Pediatrics

National Hospice and Palliative Care Organization. Compendium of pediatric palliative care

A guide to the development of children's palliative care services

Pediatric palliative care

N Engl J Med

Karyotype/phenotype correlation: prospects and problems illustrated by trisomy 18

Prog Clin Biol Res

End-of-life decisions in newborns: an approach from The Netherlands

Pediatrics

Interest in physician-assisted suicide among Oregon cancer patients

J Clin Ethics

Physician-assisted suicide among Oregon cancer patients: a fading issue

J Clin Ethics

In the Michigan Court of Appeals: people vs. Jack Kevorkian

Issues Law Med

The afterlife of Terri Schiavo

Hastings Center Report

Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care

JAMA

Parental perspectives on end-of-life care in the pediatric intensive care unit

Crit Care Med

Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations

Pediatrics

Hospital staff and family perspectives regarding quality of pediatric palliative care

Pediatrics

Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American society of clinical oncology survey

J Clin Oncol

Key factors affecting dying children and their families

J Palliat Med

End of life care in HIV-infected children who died in hospital

Dev World Bioeth

Care-related distress: a nationwide study of parents who lost a child to cancer

J Clin Oncol

Cancer-related deaths in children and adolescents

J Palliat Med

Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care

Pediatrics

Symptoms and suffering at the end of life in children with cancer

N Engl J Med

Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up

Pediatrics

Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum survey

Pediatr

Distance from home when death occurs: a population-based study of Washington State, 1989–2002

Pediatrics

Characteristics of deaths occurring in children's hospitals: implications for supportive care services

Pediatrics

Family perspectives on the quality of pediatric palliative care

Arch Pediatr Adolesc Med

Talking about death with children who have severe malignant disease

Review
Paediatric palliative care: challenges and emerging ideas