Spinal muscular artrophy type I: Do the benefits of ventilation compensate for its burdens?

Journal article

Gray, Kelly, Isaacs, David, Kilham, Henry and Tobin, Bernadette Margaret. (2013). Spinal muscular artrophy type I: Do the benefits of ventilation compensate for its burdens? Journal of Paediatrics and Child Health. 49(10), pp. 807 - 812. https://doi.org/10.1111/jpc.12386

Authors	Gray, Kelly, Isaacs, David, Kilham, Henry and Tobin, Bernadette Margaret
Abstract	We report the progress of an 8‐year‐old child with spinal muscular atrophy (SMA) type 1. The parents elected in infancy that the child should be on long‐term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated in the hospital. The leader of the long‐term ventilation team reports on the child's progress and describes a week in the child's life. Two paediatricians argue that the benefits of long‐term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long‐term ventilation now. They argue that long‐term ventilation might have been avoided by applying to a court of law when the child was an infant. An ethicist discusses ethical aspects of decision‐making in SMA type 1.
Year	2013
Journal	Journal of Paediatrics and Child Health
Journal citation	49 (10), pp. 807 - 812
Publisher	Wiley-Blackwell Publishing Ltd.
ISSN	1034-4810
Digital Object Identifier (DOI)	https://doi.org/10.1111/jpc.12386
Scopus EID	2-s2.0-84886031748
Page range	807 - 812
Research Group	School of Philosophy
Publisher's version	File Access Level Controlled
Place of publication	United Kingdom

Permalink -

https://acuresearchbank.acu.edu.au/item/88q83/spinal-muscular-artrophy-type-i-do-the-benefits-of-ventilation-compensate-for-its-burdens

Restricted files

Publisher's version

(1 files)

92
total views
0
total downloads
2
views this month
0
downloads this month

These values are for the period from 19th October 2020, when this repository was created.

Export as

Related outputs

Why should HCWs receive priority access to vaccines in a pandemic?

Symons, Xavier, Matthews, Stephen Crawford and Tobin, Bernadette Margaret. (2021). Why should HCWs receive priority access to vaccines in a pandemic? BMC Medical Ethics. 22(1), pp. 79-88. https://doi.org/10.1186/s12910-021-00650-2

‘I hope I believe in God’ : Some Implications for Contemporary Ethics

Tobin, Bernadette Margaret. (2016). ‘I hope I believe in God’ : Some Implications for Contemporary Ethics. In Religion and Culture in Dialogue: East and West Perspectives pp. 17-28 Springer Science and Business Media B.V.. https://doi.org/10.1007/978-3-319-25724-2_2

Use of guidelines when planning home care of a girl with severe congenital myopathy

Gray, Kelly, Isaacs, David, Kilham, Henry, Tobin, Bernadette Margaret and Waters, Karen. (2016). Use of guidelines when planning home care of a girl with severe congenital myopathy. Journal of Paediatrics and Child Health. 52(1), pp. 7 - 10. https://doi.org/10.1111/jpc.13065

Human Vulnerability in Medical Contexts

Matthews, Steve and Tobin, Bernadette. (2016). Human Vulnerability in Medical Contexts. Theoretical Medicine and Bioethics. 37(1), pp. 1 - 7.

Religious perspectives on umbilical cord blood banking

Tobin, Bernadette Margaret, Kerridge, Ian, Jordens, Christopher and Keown, Damien. (2012). Religious perspectives on umbilical cord blood banking. Journal of Law and Medicine. 19(3), pp. 497 - 511.

Palivizumab : A debate about funding

Fitzgerald, Dominic, Isaacs, David and Tobin, Bernadette. (2012). Palivizumab : A debate about funding. Journal of Paediatrics and Child Health. 48(5), pp. 373 - 377.

Contemporary moral philosophy and happiness: Some insights from the Judeo-Christian tradition

Tobin, Bernadette. (2011). Contemporary moral philosophy and happiness: Some insights from the Judeo-Christian tradition. In In H. Ramsay (Ed.). Truth and faith in ethics pp. 71 - 84 Imprint Academic.

How certain are you, doctor?

Gillis, Jonathan and Tobin, Bernadette. (2011). How certain are you, doctor? Pediatric Critical Care Medicine. 12(1), pp. 71 - 72. https://doi.org/10.1097/PCC.0b013e3181e2a4cd

Managing ethically questionable parental requests: Growth suppression and manipulation of puberty

Isaacs, David, Tobin, Bernadette, Hamblin, Julie, Slaytor, Emma, Donaghue, Kim C., Munns, Craig and Kilham, Henry A.. (2011). Managing ethically questionable parental requests: Growth suppression and manipulation of puberty. Journal of Paediatrics and Child Health. 47(9), pp. 581 - 584. https://doi.org/10.1111/j.1440-1754.2011.02156.x

An introduction

Tobin, Bernadette. (2011). An introduction. Journal of Paediatrics and Child Health. 47(9), pp. 579 - 580. https://doi.org/10.1111/j.1440-1754.2011.02155.x

Religious perspectives on embryo donation

Kerridge, Ian, Jordens, Christopher, Benson, Rod, Clifford, Ross, Ancheny, Rachel, Keown, Damien, Tobin, Bernadette, Bhattacharyya, Swasti, Sachedine, Abdulaziz, Lehmann, Lisa and Edgar, Brian. (2010). Religious perspectives on embryo donation. Clinical Ethics (online version). 5(1), pp. 35 - 45.

Ethical issues in immunisation

Isaacs, David, Kilham, Henry, Leask, Julie and Tobin, Bernadette Margaret. (2009). Ethical issues in immunisation. Vaccine. 27(5), pp. 615 - 618. https://doi.org/10.1016/j.vaccine.2008.11.002

When does severe childhood obesity become a child protection issue?

Alexander, Shirley, Baur, Louise, Magnusson, Roger and Tobin, Bernadette Margaret. (2009). When does severe childhood obesity become a child protection issue? Medical Journal of Australia. 190(3), pp. 136 - 138. https://doi.org/10.5694/j.1326-5377.2009.tb02313.x

Gaining consent for publication in difficult cases involving children

Isaacs, David, Kilham, Henry, Ryan, Monique and Tobin, Bernadette Margaret. (2008). Gaining consent for publication in difficult cases involving children. BMJ.

Piu parole e meno pezzi di carta. I figuciarai :uno instrumento piu valido dei testamenti bioligici per includere nuove

Tobin, Bernadette Margaret. (2007). Piu parole e meno pezzi di carta. I figuciarai :uno instrumento piu valido dei testamenti bioligici per includere nuove. In Ignazio R. Marino, Presidente della Commissione Igiene e sanita del Sanato (Ed.). Advance Care Directives. Italy: Senate of the Italian Republic.

Spinal muscular atrophy type 1: Is long-term mechanical ventilation ethical?

Ryan, Monique, Kilham, Henry, Tobin, Bernadette, Jacobs, Stephen and Isaacs, David. (2007). Spinal muscular atrophy type 1: Is long-term mechanical ventilation ethical? Journal of Paediatrics and Child Health. 43(4), pp. 237 - 242. https://doi.org/10.1111/j.1440-1754.2007.01052.x

Our genetic future

Tobin, Bernadette. (2006). Our genetic future. In In M. Whelan (Ed.). Issues for Church and Society in Australia : The Aquians Academy Jubilee Lectures 2005 pp. 33 - 46 St Pauls Publications.

Withdrawal of neonatal mechanical ventilation against the parents' wishes

Isaacs, David, Kilham, Henry, Gordon, Adrienne, Jeffrey, Heather, Tarnow-Mordi, William, Woolnough, Jodie, Hamblin, Julie and Tobin, Bernadette. (2006). Withdrawal of neonatal mechanical ventilation against the parents' wishes. Journal of Paediatrics and Child Health. 42(9), pp. 311 - 315. https://doi.org/10.1111/j.1440-1754.2006.00861.x

Rebecca's Story

Cooper, Peter, Collins, John, Leveaux, Viviane, Isaacs, David, Kilham, Henry and Tobin, Bernadette. (2005). Rebecca's Story. Journal of Paediatrics and Child Health. 41(8), pp. 453 - 455. https://doi.org/10.1111/j.1440-1754.2005.00669.x

Australian Consequentialism: An Australian Critique

Tobin, Bernadette. (2005). Australian Consequentialism: An Australian Critique. Theoretical Medicine and Bioethics. 26(3), pp. 165 - 173. https://doi.org/10.1007/s11017-005-3974-z

Nutrition in cerebral palsy

Isaacs, David, Kilham, Henry, Somerville, Helen, O'Loughlin, Edward and Tobin, Bernadette. (2004). Nutrition in cerebral palsy. Journal of Paediatrics and Child Health. 40(June), pp. 308 - 310. https://doi.org/10.1111/j.1440-1754.2004.00369.x

Reasoning about embryos, cloning and stem cells

Tobin, Bernadette. (2003). Reasoning about embryos, cloning and stem cells. Monash bioethics review. 22(1), pp. 8 - 21.

Is there a distinctly surgical ethic?

Tobin, Bernadette Margaret. (2003). Is there a distinctly surgical ethic? In In I. Kerridge, C. Jordens and E. Sayers (Ed.). Restoring Humane Values to Medicine pp. 18 - 20 Desert Pea Press.

Response to Malcolm Parker

Tobin, Bernadette. (2003). Response to Malcolm Parker. Monash bioethics review. 22(1), pp. 8 - 21.

Why we should have maintained a prohibition on destructive research on human embryos

Tobin, Bernadette Margaret. (2003). Why we should have maintained a prohibition on destructive research on human embryos. In In W. Wing, H. Iam and I. Barns (Ed.). God Down Under Theology in the Antipodes pp. 207 - 215 Australian Theological Forum Press.