• American Academy of Pediatrics Committee on Bioethics 1994, ‘Guidelines on foregoing life-sustaining medical treatment’, Pediatrics, vol. 93, pp. 532–36.

    Australian 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.

    Australian 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.

    Back A, Arnold R and Tulsky J 2009, ‘Mastering communication with seriously ill patients: balancing honesty with empathy and hope’, Cambridge University Press, Cambridge.

    Baile 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.

    Baverstock A and Finlay F 2006, ‘Specialist registrars’ emotional responses to a patient’s death’, Archives of Disease in Childhood, vol. 91, pp. 774–76.

    Beringer 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.

    Bluebond-Langner M 1989, ‘Worlds of dying children and their well siblings’, Death Studies, vol. 13, pp. 1–16.

    British Medical Association 2007, Withholding and withdrawing life-prolonging medical treatment: guidance for decision-making, 3rd ed., BMA publications, London.

    Brook L and Hain R 2008, ‘Predicting death in children’, Archives of Disease in Childhood,

    vol. 93, no. 12, pp. 1067–70.

    Buckman 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.

    Clayton 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.

    Consultative 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.

    de Vos 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. 465-476.

    Department 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 Victoria, Melbourne.

    Department of Health 2011, Victorian Health Priorities Framework 2012–2022,

    State Government of Victoria, Melbourne.

    Department of Health 2012, The next steps: Having conversations on life and death,

    State Government of Victoria, Melbourne.

    Department of Health 2014, Advance care planning: have the conversation – a strategy for Victorian health services 2014–2018, State Government of Victoria, Melbourne.

    Durall 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.

    Fellowes 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.

    Feudtner C 2007, ‘Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making’, Pediatr Clin N Am, vol. 54, pp. 583–607.

    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.

    Feyi 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. 19–25.

    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.

    Fischer, Tulsky J and Arnold B 2000, ‘Communicating a poor prognosis’, in: Portenoy R, Breuera E (eds) Topics in palliative care, Oxford University Press, New York.

    Forbes T, Goeman E, Stark Z, Hynson J and Forrester M 2008, ‘Discussing withdrawing and withholding of life-sustaining medical treatment in a tertiary paediatric hospital:

    a 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.

    Fraser 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.


    Gauvin 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, pp. 126–30.

    Gawande A 2014, Being mortal: medicine and what matters in the end, Profile Books Ltd, London.

    Gillam 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.

    Hain 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.

    Hammes BJ, Klevan J, Kempf M and Williams MS 2005, ‘Pediatric advance care planning’,

    Journal of Palliative Medicine, vol. 8, pp. 766–73.

    Hayes B 2013, ‘Clinical model for ethical cardiopulmonary resuscitation decision-making’,

    Internal Journal of Medicine, vol. 43, no. 1, pp. 77–83.

    Heckford E and Beringer AJ 2014, ‘Advance care planning: challenges and approaches for pediatricians’, Journal of Palliative Medicine, vol. 17, no. 9, pp. 1049–53.

    Hilden JM, Watterson J and Chrastek J 2000, ‘Tell the children’, Journal of Clinical Oncology, vol. 18, pp. 3193–195.

    Hinds 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. 9146–54.

    Hinds 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. 465-474.

    Horridge KA 2015, ‘Advance care planning: practicalities, legalities, complexities and controversies’, Archives of Disease in Childhood, vol. 100, no. 4, pp. 380–85.

    Jing Y 2015, ‘Being mortal: medicine and what matters in the end’ by Atul Gawande,

    World Literature Today, September 2015.

    Kreicbergs 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 malignancy:

    a population-based follow-up’, Psychological Medicine, vol. 34, no. 8, pp. 1431–41.

    Kurtz S, Silverman J and Draper J 2005, Teaching and learning communication skills in medicine, 2nd ed, Radcliffe Publishing, Oxford.

    Larcher 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.

    Lotz JD, Jox RJ, Borasio GD and Fuhrer M 2013, ‘Pediatric advance care planning: a systematic review’, Pediatrics, vol. 131, no. 3, pp. 873–80.

    Lotz 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.

    Lyon 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.

    Lyon 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.

    Mack J 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.

    Mack JW, 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, pp. 5265–70.

    Meert 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.

    Meyer 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.

    Murray 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.

    Papadatou 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.

    Pousset 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.

    Quill 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.

    Royal Australasian College of Physicians 2008, Decision-making at the end of life in infants, children and adolescents, Royal Australasian College of Physicians, Sydney.

    Silverman J, Krutz S and Draper J 2005, Skills for communication with patients, 2nd edition, Radcliffe Publishing, Oxford.

    Spicer 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.

    Stone MJ 2001, ‘Goals of care at the end of life’, Proc (Bayl Univ Med Cent), vol. 14, no. 2, pp. 134–37.

    Sullivan 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.

    Surkan 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. 317–31.

    United 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. 897–904.

    Wharton 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.


    Wolff T and Browne J 2011, ‘Organizing end of life care: Parallel planning’, Paediatr Child Health, vol. 21, no. 8, pp. 378–84.

    Wolfe 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, p. 1011.

    Wolfe J, Klar N, Grier HE et al. 2000, ‘Understanding of prognosis among parents

    of 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.

    Wolff A, Browne J and Whitehouse WP 2011, ‘Personal resuscitation plans and end

    of life planning for children with disability and life-limiting/life-threatening conditions’,

    Archives of Disease in Childhood Education and Practice Ed, vol. 96, pp. 42–48.

    Xafis 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.

    Xafis 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.