In this section
Academy of Pediatrics Committee on Bioethics 1994, ‘Guidelines on foregoing
life-sustaining medical treatment’, Pediatrics, vol. 93, pp. 532–36.
Commission on Safety and Quality in Healthcare 2013, Safety and quality at
end of life care in acute hospitals – a background paper, Australian
Commission on Safety and Quality in Healthcare, Canberra.
Health Ministers’ Advisory Council 2011, A national framework for advance
care directives, Commonwealth of Australia, Canberra.
Back AL, Arnold RM and Quill TE 2003,
‘Hope for the best, and prepare for the worst’,
Ann Intern Med, vol. 138, no. 5, pp. 439–43.
A, Arnold R and Tulsky J 2009, ‘Mastering communication with seriously ill
patients: balancing honesty with empathy and hope’, Cambridge University Press,
W, Buckman R, Lenzi R, Glober G, Beale E and Kudelka A 2000, ‘SPIKES – a six
step protocol for delivering bad news: application to the patient with cancer’,
The Oncologist, vol. 5, no. 4, pp. 302–311.
A and Finlay F 2006, ‘Specialist registrars’ emotional responses to a patient’s
death’, Archives of Disease in Childhood, vol. 91, pp. 774–76.
AJ and Heckford EJ 2014, ‘Was there a plan? End-of-life care for children with
life-limiting conditions: a review of multi-service healthcare records’, Child:
Care, Health and Development, vol. 40, no. 2, pp. 176–83.
M 1989, ‘Worlds of dying children and their well siblings’, Death Studies, vol.
13, pp. 1–16.
Medical Association 2007, Withholding and withdrawing life-prolonging
medical treatment: guidance for decision-making, 3rd ed., BMA publications,
Brook L and Hain R 2008, ‘Predicting
death in children’, Archives of Disease in Childhood,
vol. 93, no. 12, pp. 1067–70.
R 2002, ‘Communication and emotions: skills and effort are key’, British
Medical Journal, vol. 325, p. 672.
Canadian Paediatric Society 2008,
‘Advance care planning for paediatric patients’,
Paediatric Child Health, vol. 13, pp. 791–96.
JM, Hancock KM, Butow PN, Tattersall MHN
and Currow DC 2007, ‘Clinical
practice guidelines for communicating prognosis and end-of-life issues with
adults in the advanced stages of a life-limiting illness, and their caregivers’, Medical Journal of Australia, vol. 186, no. 12, pp. S77–108.
Council on Obstetric and Paediatric Mortality and Morbidity 2014, Victoria’s
mothers and babies, Victoria’s maternal, perinatal, child and adolescent
mortality 2010–2011, State Government of Victoria, Melbourne.
MA, Bos, AP, Plotz FB, van Heerde M et al. 2015, ‘Talking with parents about
end-of-life decisions for their children’, Pediatrics, vol. 135, pp.
of Health 2008, Strengthening care for children with a life-threatening
condition: a policy for health, palliative care, disability, children’s
services and community care providers 2008–2015, State Government of
Department of Health 2011, Victorian
Health Priorities Framework 2012–2022,
State Government of Victoria,
Department of Health 2012, The
next steps: Having conversations on life and death,
of Health 2014, Advance care planning: have the conversation – a strategy
for Victorian health services 2014–2018, State Government of Victoria,
A, Zurakowski D and Wolfe J 2012, ‘Barriers to conducting advance care
discussions for children with life- threatening conditions’, Pediatrics, vol.
129, no. 4, pp. 975–82.
D, Wilkinson S and Moore P 2003,
‘Communication skills training for health care professionals working with
cancer patients, their families and/or carers’,
Cochrane Database of Systematic Reviews, vol. 2, CD003751.
C 2007, ‘Collaborative communication in pediatric palliative care: a foundation
for problem-solving and decision-making’, Pediatr Clin N Am, vol. 54,
Feudtner C 2009, ‘The breadth of
hopes’, N Engl J Med, vol. 361, pp. 2306–07.
Feudtner C, Kang TI, Hexem KR,
Friedrichsdorf SJ, Osenga K, Siden H et al. 2011, ‘Pediatric palliative care patients: a
prospective multicenter cohort study’, Pediatrics,
vol. 127, no. 6, pp. 1094–101.
K, Klinger S, Pharro G, Mcnally L, James A, Gretton K and Almond MK 2015,
‘Predicting palliative care needs and mortality in end stage renal disease: use
of an at-risk register’, British Medical Jourrnal Supportive and Palliative Care, vol. 5, no. 1, pp.
Finlay F, Lewis M, Lenton S and Poon
M 2008, ‘Planning for the end of children’s lives
– the lifetime framework’, Child:
Care, Health and Development, vol. 34, pp. 542–44.
Tulsky J and Arnold B 2000, ‘Communicating a poor prognosis’, in: Portenoy R,
Breuera E (eds) Topics in palliative care, Oxford University Press, New
T, Goeman E, Stark Z, Hynson J and Forrester M 2008, ‘Discussing withdrawing
and withholding of life-sustaining medical treatment in a tertiary paediatric
survey of clinician attitudes and practices’, Journal of Paediatric Child
Health, vol. 44, no. 7–8, pp. 392–98.
Fraser J, Harris N, Beringer AJ, Prescott
H and Finlay F 2010, ‘Advance care
planning in children with life-limiting conditions – the Wishes Document’, Archives
of Disease in Childhood, vol.
95, pp. 79–82.
LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, et al. 2012, ‘Rising
national prevalence of life-limiting conditions in children in England’, Pediatrics,
vol. 129, pp.
F and Cyr C 2015, ‘Questions to consider when caring for a child with a high
risk of dying before adulthood’, Paediatr Child Health, vol. 20, no. 3,
A 2014, Being mortal: medicine and what matters in the end, Profile
Books Ltd, London.
L 2015, ‘The zone of parental discretion: an ethical tool for dealing with
disagreement between parents and doctors about medical treatment for a child’, Clinical
Ethics, doi: 10.1177/1477750915622033.
R, Devins M, Hastings R and Noyes J 2013, ‘Paediatric palliative care:
development and pilot study of a ‘Directory’ of life-limiting conditions’, BioMed
Central Palliative Care, vol. 12, p. 43.
Klevan J, Kempf M and Williams MS 2005, ‘Pediatric advance care planning’,
Palliative Medicine, vol. 8, pp. 766–73.
Hayes B 2013,
‘Clinical model for ethical cardiopulmonary resuscitation decision-making’,
Journal of Medicine, vol. 43, no. 1, pp.
E and Beringer AJ 2014, ‘Advance care planning: challenges and approaches for
pediatricians’, Journal of Palliative Medicine, vol. 17, no. 9, pp. 1049–53.
JM, Watterson J and Chrastek J 2000, ‘Tell the children’, Journal of
Clinical Oncology, vol. 18, pp. 3193–195.
PS, Drew D, Oakes LL et al. 2005, ‘End-of-life care preferences of pediatric
patients with cancer’, Journal of Clinical Oncology, vol. 23, pp.
P and Patterson-Kelly K 2010, ‘Helping parents make and survive end of life
decisions for their seriously ill child’, Nurs Clin N Am, vol. 45, pp.
KA 2015, ‘Advance care planning: practicalities, legalities, complexities and
controversies’, Archives of Disease in Childhood, vol. 100, no. 4, pp.
Jing Y 2015,
‘Being mortal: medicine and what matters in the end’ by Atul Gawande,
Literature Today, September 2015.
U, Valdimarsdottir U, Onelov E, Henter JI and Steineck G 2004, ‘Anxiety and
depression in parents 4–9 years after the loss of a child owing to a
population-based follow-up’, Psychological Medicine, vol. 34, no. 8, pp.
S, Silverman J and Draper J 2005, Teaching and learning communication skills
in medicine, 2nd ed, Radcliffe Publishing, Oxford.
V, Craig F, Bhogal K, Wilkinson D and Brierley J 2015, ‘Making decisions to
limit treatment in life-limiting and life-threatening conditions in children: a
framework for practice’, Archives of Disease in Childhood, vol. 100,
suppl. 2, s.1–s.23.
JD, Jox RJ, Borasio GD and Fuhrer M 2013, ‘Pediatric advance care planning: a
systematic review’, Pediatrics, vol. 131, no. 3, pp. 873–80.
JD, Jox RJ, Borasio GD and Fuhrer M 2015, ‘Paediatric advance care planning
from the perspective of health care professionals: a qualitative interview
study’, Palliative Medicine, vol. 29, pp. 212–22.
ME, Garvie PA, McCarter R, Briggs L, He J and D’Angelo LJ 2009, ‘Who will speak
for me? Improving end-of-life decision making for adolescents with HIV and
their families’, Pediatrics, vol. 123, no. 2, pp. 199–206.
ME, McCabe MA, Patel K and D’Angelo LJ
2004, ‘What do adolescents want? An exploratory study
regarding end-of-life decision-making’, Journal of Adolescent Health, vol. 35, pp. 529e1–529e6.
and Wolfe J 2006, ‘Early integration of pediatric palliative care: for some
children, palliative care starts at diagnosis’, Curr Opin Pediatr, vol.
18, no. 1, pp. 10–4.
Wolfe J, Grier HE, Cleary PD and Weeks JC 2006, ‘Communication about prognosis
between parents and physicians of children with cancer: parent preferences and
the impact of prognostic information’, J Clin Oncol, vol. 24, no. 33,
KL, Thurston CS and Thomas R 2001, ‘Parental coping and bereavement outcome
after the death of a child in the pediatric intensive care unit’, Pediatric
Critical Care Medicine, vol. 2, no. 4, pp. 324–28.
EC, Burns JP, Griffith JL and Truog RD 2002, ‘Parental perspectives on
end-of-life care in the paediatric intensive care unit’, Critical Care
Medicine, vol. 30, pp. 226–31.
S and Boyd K 2011, ‘Using the “surprise question” can identify people with
advanced heart failure and COPD who would benefit from a palliative care
approach’, Palliative Medicine, vol. 25, p. 382.
D, Bellali T, Papazoglou I and Petraki D 2002, ‘Greek nurse and physician grief
as a result of caring for children dying of cancer’, Pediatric Nursing, vol.
28, pp. 345–53.
G, Bilsen J, De Wilde J, Benoit Y, Verlooy J, Bomans A et al. 2009, ‘Attitudes
of adolescent cancer survivors toward end-of-life decisions for minors’, Pediatrics,
vol. 124, no. 6, pp. 1142–48.
TE, Arnold RM and Platt F 2001, ‘“I wish things were different”: expressing
wishes in response to loss, futility, and unrealistic hopes’, Ann Intern
Med, vol. 135, p. 551–55.
Ramnarayan P, Craig F, Petros A, et
al. 2007, ‘Characteristics of deaths occurring
in hospitalised children: changing
trends’, Journal of Medical Ethics, vol. 33, pp. 255–60.
Australasian College of Physicians 2008, Decision-making at the end of life
in infants, children and adolescents, Royal Australasian College of
J, Krutz S and Draper J 2005, Skills for communication with patients, 2nd
edition, Radcliffe Publishing, Oxford.
S, MacDonald ME, Davies D, Vadeboncoeur C and Siden H 2015, ‘Introducing a
lexicon of terms for paediatric palliative care’, Paediatric Child Health, vol.
20, pp. 155–56.
Stark Z, Hynson J and Forrester M
2008, ‘Discussing withholding and withdrawing
of life-sustaining medical treatment
in paediatric inpatients: audit of current practice’,
Journal of Paediatric Child
Health, vol. 44, no. 7–8, pp. 399–403.
MJ 2001, ‘Goals of care at the end of life’, Proc (Bayl Univ Med Cent), vol.
14, no. 2, pp. 134–37.
J, Monagle P and Gillam L 20114, ‘What parents want from doctors in end-of-life
decision making for children’, Archives of Disease in Childhood, vol.
99, pp. 216–20.
PJ, Kreicbergs U, Valdimarsdottir U, Nyberg U, Onelov E, Dickman PW and
Steineck G 2006, ‘Perceptions of inadequate health care and feelings of guilt
in parents after the death of a child to a malignancy: a population-based
long-term follow-up’, Journal of Palliative Medicine, vol. 9, no. 2, pp.
Nations 1989, Convention on the Rights of the Child (20, xi, 1989; TS44;
CM 1976) United Nations, New York 1989.
Weiner L, Zadeh S, Battles H, Baird K, Ballard E, Osherow J and Pao M 2012, ‘Allowing
adolescents and young adults to plan their end-of-life care’, Pediatrics, vol. 130, pp.
RH, Levine KR, Buka S and Emanuel L 1996, ‘Advance care planning for children
with special health care needs: a survey of parental attitudes’, Pediatrics,
vol. 97, pp.
T and Browne J 2011, ‘Organizing end of life care: Parallel planning’, Paediatr
Child Health, vol. 21, no. 8, pp. 378–84.
AD, Frierdich SA, Wish J, Kilgore-Carlin J, Plotkin JA and Hoover-Regan M 2014,
‘Sharing life-altering information: development of pediatric hospital
guidelines and team training’, Journal of Palliative Medicine, vol. 17,
Wolfe J, Klar
N, Grier HE et al. 2000, ‘Understanding of prognosis among parents
children who died of cancer: Impact on treatment goals and integration of
palliative care’, The Journal of the American Medical Association, vol.
284, pp. 2469–75.
Browne J and Whitehouse WP 2011, ‘Personal resuscitation plans and end
planning for children with disability and life-limiting/life-threatening
of Disease in Childhood Education and Practice Ed, vol. 96, pp. 42–48.
V, Gillam L, Hynson J, Sullivan J, Cossich M and Wilkinson D 2015, ‘Caring
decisions: the development of a written resource for parents facing end-of-life
decisions’, Journal of Palliative Medicine, vol. 18, pp. 945–955.
V, Wilkinson D and Sullivan J 2015, ‘What information do parents need when
facing end-of-life decisions for their child? A meta-synthesis of parental
feedback’, BMC Palliative Care, vol. 14, p. 19.