大象视频

References

  • American Academy of Pediatrics Committee on Bioethics 1994, 鈥楪uidelines on foregoing life-sustaining medical treatment鈥, Pediatrics, vol. 93, pp. 532鈥36.

    Australian Commission on Safety and Quality in Healthcare 2013, Safety and quality at end of life care in acute hospitals 鈥 a background paper, Australian Commission on Safety and Quality in Healthcare, Canberra.

    Australian Health Ministers鈥 Advisory Council 2011, A national framework for advance care directives, Commonwealth of Australia, Canberra.

    Back AL, Arnold RM and Quill TE 2003, 鈥楬ope for the best, and prepare for the worst鈥,聽Ann Intern Med, vol. 138, no. 5, pp. 439鈥43.

    Back A, Arnold R and Tulsky J 2009, 鈥楳astering communication with seriously ill patients: balancing honesty with empathy and hope鈥, Cambridge University Press, Cambridge.

    Baile W, Buckman R, Lenzi R, Glober G, Beale E and Kudelka A 2000, 鈥楽PIKES 鈥 a six step protocol for delivering bad news: application to the patient with cancer鈥, The Oncologist, vol. 5, no. 4, pp. 302鈥311.

    Baverstock A and Finlay F 2006, 鈥楽pecialist registrars鈥 emotional responses to a patient鈥檚 death鈥, Archives of Disease in Childhood, vol. 91, pp. 774鈥76.

    Beringer AJ and Heckford EJ 2014, 鈥榃as there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records鈥, Child: Care, Health and Development, vol. 40, no. 2, pp. 176鈥83.

    Bluebond-Langner M 1989, 鈥榃orlds of dying children and their well siblings鈥, Death Studies, vol. 13, pp. 1鈥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, 鈥楶redicting death in children鈥, Archives of Disease in Childhood,

    vol. 93, no. 12, pp. 1067鈥70.

    Buckman R 2002, 鈥楥ommunication and emotions: skills and effort are key鈥, British Medical Journal, vol. 325, p. 672.

    Canadian Paediatric Society 2008, 鈥楢dvance care planning for paediatric patients鈥,

    Paediatric Child Health, vol. 13, pp. 791鈥96.

    Clayton JM, Hancock KM, Butow PN, Tattersall MHN and Currow DC 2007, 鈥楥linical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers鈥, Medical Journal of Australia, vol. 186, no. 12, pp. S77鈥108.

    Consultative Council on Obstetric and Paediatric Mortality and Morbidity 2014, Victoria鈥檚 mothers and babies, Victoria鈥檚 maternal, perinatal, child and adolescent mortality 2010鈥2011, State Government of Victoria, Melbourne.

    de Vos MA, Bos, AP, Plotz FB, van Heerde M et al. 2015, 鈥楾alking with parents about end-of-life decisions for their children鈥, 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鈥檚 services and community care providers 2008鈥2015, State Government of Victoria, Melbourne.

    Department of Health 2011, Victorian Health Priorities Framework 2012鈥2022,聽State Government of Victoria, Melbourne.

    Department of Health 2012, The next steps: Having conversations on life and death,聽State Government of Victoria, Melbourne.

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

    Durall A, Zurakowski D and Wolfe J 2012, 鈥楤arriers to conducting advance care discussions for children with life- threatening conditions鈥, Pediatrics, vol. 129, no. 4, pp. 975鈥82.

    Fellowes D, Wilkinson S and Moore P 2003, 鈥楥ommunication skills training for health care professionals working with cancer patients, their families and/or carers鈥, Cochrane Database of Systematic Reviews, vol. 2, CD003751.

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

    Feudtner C 2009, 鈥楾he breadth of hopes鈥, N Engl J Med, vol. 361, pp. 2306鈥07.

    Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H et al. 2011, 鈥楶ediatric palliative care patients: a prospective multicenter cohort study鈥, Pediatrics, vol. 127, no. 6, pp. 1094鈥101.

    Feyi K, Klinger S, Pharro G, Mcnally L, James A, Gretton K and Almond MK 2015, 鈥楶redicting palliative care needs and mortality in end stage renal disease: use of an at-risk register鈥, British Medical Jourrnal Supportive and聽 Palliative Care, vol. 5, no. 1, pp. 19鈥25.

    Finlay F, Lewis M, Lenton S and Poon M 2008, 鈥楶lanning for the end of children鈥檚 lives聽鈥 the lifetime framework鈥, Child: Care, Health and Development, vol. 34, pp. 542鈥44.

    Fischer, Tulsky J and Arnold B 2000, 鈥楥ommunicating a poor prognosis鈥, 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, 鈥楧iscussing withdrawing and withholding of life-sustaining medical treatment in a tertiary paediatric hospital:聽a survey of clinician attitudes and practices鈥, Journal of Paediatric Child Health, vol. 44, no. 7鈥8, pp. 392鈥98.

    Fraser J, Harris N, Beringer AJ, Prescott H and Finlay F 2010, 鈥楢dvance care planning in children with life-limiting conditions 鈥 the Wishes Document鈥, Archives of Disease in Childhood, vol. 95, pp. 79鈥82.

    Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, et al. 2012, 鈥楻ising national prevalence of life-limiting conditions in children in England鈥, Pediatrics, vol. 129, pp.聽923鈥29.

    Gauvin F and Cyr C 2015, 鈥楺uestions to consider when caring for a child with a high risk of dying before adulthood鈥, Paediatr Child Health, vol. 20, no. 3, pp. 126鈥30.

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

    Gillam L 2015, 鈥楾he zone of parental discretion: an ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child鈥, Clinical Ethics, doi: 10.1177/1477750915622033.

    Hain R, Devins M, Hastings R and Noyes J 2013, 鈥楶aediatric palliative care: development and pilot study of a 鈥楧irectory鈥 of life-limiting conditions鈥, BioMed Central Palliative Care, vol. 12, p. 43.

    Hammes BJ, Klevan J, Kempf M and Williams MS 2005, 鈥楶ediatric advance care planning鈥,

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

    Hayes B 2013, 鈥楥linical model for ethical cardiopulmonary resuscitation decision-making鈥,

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

    Heckford E and Beringer AJ 2014, 鈥楢dvance care planning: challenges and approaches for pediatricians鈥, Journal of Palliative Medicine, vol. 17, no. 9, pp. 1049鈥53.

    Hilden JM, Watterson J and Chrastek J 2000, 鈥楾ell the children鈥, Journal of Clinical Oncology, vol. 18, pp. 3193鈥195.

    Hinds PS, Drew D, Oakes LL et al. 2005, 鈥楨nd-of-life care preferences of pediatric patients with cancer鈥, Journal of Clinical Oncology, vol. 23, pp. 9146鈥54.

    Hinds P and Patterson-Kelly K 2010, 鈥楬elping parents make and survive end of life decisions for their seriously ill child鈥, Nurs Clin N Am, vol. 45, pp. 465-474.

    Horridge KA 2015, 鈥楢dvance care planning: practicalities, legalities, complexities and controversies鈥, Archives of Disease in Childhood, vol. 100, no. 4, pp. 380鈥85.

    Jing Y 2015, 鈥楤eing mortal: medicine and what matters in the end鈥 by Atul Gawande,
    World Literature Today,
    September 2015.

    Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI and Steineck G 2004, 鈥楢nxiety and depression in parents 4鈥9 years after the loss of a child owing to a malignancy:

    a population-based follow-up鈥, Psychological Medicine, vol. 34, no. 8, pp. 1431鈥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, 鈥楳aking decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice鈥, Archives of Disease in Childhood, vol. 100, suppl. 2, s.1鈥搒.23.

    Lotz JD, Jox RJ, Borasio GD and Fuhrer M 2013, 鈥楶ediatric advance care planning: a systematic review鈥, Pediatrics, vol. 131, no. 3, pp. 873鈥80.

    Lotz JD, Jox RJ, Borasio GD and Fuhrer M 2015, 鈥楶aediatric advance care planning from the perspective of health care professionals: a qualitative interview study鈥, Palliative Medicine, vol. 29, pp. 212鈥22.

    Lyon ME, Garvie PA, McCarter R, Briggs L, He J and D鈥橝ngelo LJ 2009, 鈥榃ho will speak for me? Improving end-of-life decision making for adolescents with HIV and their families鈥, Pediatrics, vol. 123, no. 2, pp. 199鈥206.

    Lyon ME, McCabe MA, Patel K and D鈥橝ngelo LJ 2004, 鈥榃hat do adolescents want? An exploratory study regarding end-of-life decision-making鈥, Journal of Adolescent Health, vol. 35, pp. 529e1鈥529e6.

    Mack J and Wolfe J 2006, 鈥楨arly integration of pediatric palliative care: for some children, palliative care starts at diagnosis鈥, Curr Opin Pediatr, vol. 18, no. 1, pp. 10鈥4.

    Mack JW, Wolfe J, Grier HE, Cleary PD and Weeks JC 2006, 鈥楥ommunication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information鈥, J Clin Oncol, vol. 24, no. 33, pp. 5265鈥70.

    Meert KL, Thurston CS and Thomas R 2001, 鈥楶arental coping and bereavement outcome after the death of a child in the pediatric intensive care unit鈥, Pediatric Critical Care Medicine, vol. 2, no. 4, pp. 324鈥28.

    Meyer EC, Burns JP, Griffith JL and Truog RD 2002, 鈥楶arental perspectives on end-of-life care in the paediatric intensive care unit鈥, Critical Care Medicine, vol. 30, pp. 226鈥31.

    Murray S and Boyd K 2011, 鈥楿sing the 鈥渟urprise question鈥 can identify people with advanced heart failure and COPD who would benefit from a palliative care approach鈥, Palliative Medicine, vol. 25, p. 382.

    Papadatou D, Bellali T, Papazoglou I and Petraki D 2002, 鈥楪reek nurse and physician grief as a result of caring for children dying of cancer鈥, Pediatric Nursing, vol. 28, pp. 345鈥53.

    Pousset G, Bilsen J, De Wilde J, Benoit Y, Verlooy J, Bomans A et al. 2009, 鈥楢ttitudes of adolescent cancer survivors toward end-of-life decisions for minors鈥, Pediatrics, vol. 124, no. 6, pp. 1142鈥48.

    Quill TE, Arnold RM and Platt F 2001, 鈥樷淚 wish things were different鈥: expressing wishes in response to loss, futility, and unrealistic hopes鈥, Ann Intern Med, vol. 135, p. 551鈥55.

    Ramnarayan P, Craig F, Petros A, et al. 2007, 鈥楥haracteristics of deaths occurring聽in hospitalised children: changing trends鈥, Journal of Medical Ethics, vol. 33, pp. 255鈥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, 鈥業ntroducing a lexicon of terms for paediatric palliative care鈥, Paediatric Child Health, vol. 20, pp. 155鈥56.

    Stark Z, Hynson J and Forrester M 2008, 鈥楧iscussing withholding and withdrawing聽of life-sustaining medical treatment in paediatric inpatients: audit of current practice鈥,
    Journal of Paediatric Child Health,
    vol. 44, no. 7鈥8, pp. 399鈥403.

    Stone MJ 2001, 鈥楪oals of care at the end of life鈥, Proc (Bayl Univ Med Cent), vol. 14, no. 2, pp. 134鈥37.

    Sullivan J, Monagle P and Gillam L 20114, 鈥榃hat parents want from doctors in end-of-life decision making for children鈥, Archives of Disease in Childhood, vol. 99, pp. 216鈥20.

    Surkan PJ, Kreicbergs U, Valdimarsdottir U, Nyberg U, Onelov E, Dickman PW and Steineck G 2006, 鈥楶erceptions 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鈥, Journal of Palliative Medicine, vol. 9, no. 2, pp. 317鈥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, 鈥楢llowing adolescents and young adults to plan their end-of-life care鈥, Pediatrics, vol. 130, pp. 897鈥904.

    Wharton RH, Levine KR, Buka S and Emanuel L 1996, 鈥楢dvance care planning for children with special health care needs: a survey of parental attitudes鈥, Pediatrics, vol. 97, pp.

    682鈥27.

    Wolff T and Browne J 2011, 鈥極rganizing end of life care: Parallel planning鈥, Paediatr Child Health, vol. 21, no. 8, pp. 378鈥84.

    Wolfe AD, Frierdich SA, Wish J, Kilgore-Carlin J, Plotkin JA and Hoover-Regan M 2014, 鈥楽haring life-altering information: development of pediatric hospital guidelines and team training鈥, Journal of Palliative Medicine, vol. 17, p. 1011.

    Wolfe J, Klar N, Grier HE et al. 2000, 鈥楿nderstanding of prognosis among parents 聽of children who died of cancer: Impact on treatment goals and integration of palliative care鈥, The Journal of the American Medical Association, vol. 284, pp. 2469鈥75.

    Wolff A, Browne J and Whitehouse WP 2011, 鈥楶ersonal resuscitation plans and end聽of life planning for children with disability and life-limiting/life-threatening conditions鈥,
    Archives of Disease in Childhood Education and Practice Ed,
    vol. 96, pp. 42鈥48.

    Xafis V, Gillam L, Hynson J, Sullivan J, Cossich M and Wilkinson D 2015, 鈥楥aring decisions: the development of a written resource for parents facing end-of-life decisions鈥, Journal of Palliative Medicine, vol. 18, pp. 945鈥955.

    Xafis V, Wilkinson D and Sullivan J 2015, 鈥榃hat information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback鈥, BMC Palliative Care, vol. 14, p. 19.