Submission to the Enquiry into Options and Mechanisms to Increase Organ Donation in Victoria
Tuesday, 3 May 2011
| Ad Hoc Interfaith Committee
Tuesday, 29 March 2011
Richard Willis
Secretary, Council Committees
Department of the Legislative Council
Parliament House
Spring Street
East Melbourne, 3002
Email: richard.willis@parliament.vic.gov.au
Dear Mr Wills,
RE: Enquiry into Options and Mechanisms to Increase Organ Donation in Victoria
1. Introduction
The Ad Hoc Interfaith Committee is a group of people of several different faiths who share common concerns about the issues raised in relation increasing organ donation. We are strongly supportive of organ donation both after death and during life. Organ donation, within an appropriate ethical framework, is an act of solidarity and of love that is entirely consistent with our faith perspectives.
2. Brief Response to Terms of Reference
The Committee is charged with reporting on options and mechanisms to increase organ donation in Victoria including:
(1) the operation of existing legislative, procedural and governance frameworks and policies, including in other jurisdictions;
We note the higher organ donation rates in Spain. A major difference is that in Spain dying patients and families are approached before death to discuss organ donation. Thus instead of the issue being broached for the first time after death, in pressing circumstances, the issue is discussed openly and with the time to make considered and well informed judgements. Spain also has presumed consent or opting out but that would not seem to be a factor because Sweden which also has opting out has a comparatively low rate of donation.
(2) assessment of available national and international evidence on the effectiveness and efficacy of policies to increase donation rates, including the operation of various disclosure and consent arrangements such as presumed consent;
We make a number of suggestions to improve organ donation rates, but are deeply concerned to preserve the ethical framework based on sound law, especially the definition of death.
(3) identification and assessment of various possible mechanisms to increase organ donation in Victoria;
Adopting the approach employed in Spain, especially of speaking with people at risk of dying and their families about organ donation after death – this would appear to be the major reason why Spain has a higher donation rate than we do;
Exploring the differences in the donation rates between people who die in private hospitals compared to public hospitals and how donation rates from those who die in private hospitals might be improved;
Increasing confidence in donation after death by the brain criterion by adopting the practice used in Spain, France and Singapore which require ancillary testing that demonstrates a lack of blood supply to the brain and showing families an image of that lack of flow;
Conducting a public education campaign to explain:
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the conditions under which a registered donor can become an organ donor,
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the diagnosis of death by the brain criterion and of “beating heart” donation,
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the issues involved in donation after loss of circulation, what happens to the donor when organs are donated, and
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what is involved for families.
Such a campaign would mean that more decisions would be made in an informed way prior to the pressured circumstances of an intensive care unit, and families of donors would know what to expect.
(4) an appropriate ethical framework for decision-making, procedures and safeguards regarding organ donation, including the rights of prospective donors and family members; and
There is a range of ethical concerns with current practices and the need to ensure high standards of ethics and integrity in order to maintain confidence in organ and tissue procurement and willingness of donors and families to donate. The attached document on pastoral considerations explains many of the sensitivities that need to be respected from a Christian perspective. Not all the faiths represented on this group would endorse all aspects of the appendix.
(5) any other matters that should be considered in relation to mechanisms to increase organ donation in Victoria.
The current system of organ donation is based on altruism and represents significant social capital. We would strongly oppose any move towards commercialization. It would undermine organ and tissue donation in this country and the therapies based on it, if people were offered financial incentives to provide their tissue. It is most important that the practices are strictly regulated by government to ensure the integrity of the process and equity of access.
3. Pastoral Sensitivity of Organ Donation Policies and Practices
We are greatly concerned that nothing that is done will conflict with the pastoral needs of dying patients and their families. If the law or practice did move in a direction that would undermine pastoral care, then it would greatly affect the practice of organ donation because the latter is entirely dependant on volunteerism and goodwill.
In any proposals to change policy or practice, it is important that the Parliament is aware of the importance of the role of chaplains or pastoral care workers in assisting the dying person and their family at the time of death and afterwards.
We would be deeply opposed to proposals to permit:
a) An opt out system or presumed consent;
b) Changing the law or changing the practice in relation to the diagnosis of death which currently depends on establishing irreversible cessation of circulation or of all brain function;
c) Any form of trade in human tissue;
d) Any practice that failed to respect individual, religious or cultural sensitivities at the time of death or in relation to the body after death;
e) Replacing the notion of giving and receiving with taking and getting and treating the body just as a source of tissue;
f) Undue pressure being placed on families and individuals at a vulnerable time
Thank you for the opportunity to submit. We would welcome the opportunity for our representatives to meet with the committee.
Yours sincerely,
Associate Professor Rosalie Hudson
RN, Dip Arts, B App Sci (adv.nsg) Grad Dip Geront. Nsg, B Theol, M Theol, PhD, FRCNA, FAAG
Honorary Senior Fellow, School of Nursing & Social Work, The University of Melbourne
On behalf of the undersigned.
List of Signatories
Pastor Peter Stevens
Victoria State Officer
FamilyVoice Australia
Dr. Denise Cooper-Clarke,
Researcher,
ETHOS - EA Centre for Christianity and Society
Dr Adam Cooper
John Paul II Institute for Marriage and Family
East Melbourne
Rev Ross Carter
Chairperson
Committee on Bioethics
Synod of Victoria
Uniting Church in Australia
Rev Dr Max Champion,
St John's Uniting Church Mt Waverley
The Rev DJ Palmer
Church & Nation Committee
Presbyterian Church of Victoria
A/Prof Nicholas Tonti-Filippin
Associate Dean and Head of Bioethics
John Paul II Institute for Marriage and Family
Rev Greg Pietsch
President
Lutheran Church of Australia – Vic/Tas District
Marlene Pietsch
Lutheran Church of Australia – Vic District
The Rt Rev Andrew J Bray
Moderator of the General Assembly
Presbyterian Church of Victoria
Dr Gerard O’Shea
John Paul II Institute for Marriage and Family
East Melbourne
Rev Fr. Geoff Harvey
Orthodox Chaplain, Monash University,
Clayton Campus
Marcia Riordan
Life, Marriage and Family Office
Catholic Archdiocese of Melbourne
Rob Ward
Australian Christian Lobby
Appendix
A Church Perspective on Pastoral Issues for Organ Donation
The Church’s pastoral care derives from who we are as persons within the fellowship of the Trinity. The communal relations of Father, Son and Holy Spirit are profoundly personal, embracing all humanity in a fellowship of love. This gracious invitation is not to make us divine but to make us more deeply human. Pastoral care therefore is the deeply personal interaction between one person and another. The communal nature of Trinitarian love is translated into pastoral care which regards each person as a member of a community, rather than an isolated individual. The church lives out its healing ministry in practical ways which relieve suffering wherever it is found, embracing all people into God’s gracious narrative.
Body/life unity
The Church teaches that, even when the body is missing organs the person remains whole. ‘The body is not outside the person. Self-gift and fruitfulness are rooted in the very nature of the body, and therefore in the very nature of the person, because the person “is a body.” 1 Further, ‘Biblical anthropology distinguishes in man not so much “body” and “soul,” but rather “body” and “life.” . . .the gift of breath does not cease to be the property of God: when God takes it back, man returns to the dust from which he was taken.’2 On this belief, even when we cease to have life and breath in our mortal bodies, we belong to God in whom life and death are transformed. Through the death and resurrection of Jesus Christ we are raised to new life.
Pastoral care in the context of organ donation might therefore include the following considerations:
• Focus on the nature of gift, freely given for the benefit of another.
• Ministry of accompanying, watching, waiting with family members.
• Reassuring family that the body of the person after death is not separated from God’s care, even when organs are removed.
• Modelling the utmost respect, honour and dignity for the body as person at every stage of the dying process and after death.
• The person’s body is inherently connected to other persons’ bodies, e.g., through family, friendships, and ultimately through the Body of Christ.
• The Church teaches that we are made members of one another; this membership is held together by Christ, the head of the body, a unity which cannot be broken. Our bodies are not our own, we belong to a ‘new’ body, celebrated in the church’s sacraments of baptism and eucharist.
• Even when separated bodily from the person who has died, we are united in the love of Christ from which nothing can separate us.
• Reassurance for the family that the person has died before organs are removed, e.g. through objective data related to irreversible cessation of brain activity or irreversible cessation of circulation.
• Reassurance that the person’s death was not hastened for the purpose of organ donation.
• Careful use of language, e.g., so that the person is not referred to as a ‘prospective donor’ or other de-personalised descriptions and the phrases‘brain death’ or ’brain dead’ are not applied to a person unless there has been a diagnosis that all function of the brain has ceased, that is, ‘death by the brain criterion’. A person’s integrity does not rely on cognitive capacity; even when all forms of communication appear to be absent, the person does not become a ‘non person’.
• Organ donation is not merely a matter of ‘spare parts’ but a miracle of modern medicine to be regarded with awe and wonder; particularly if life is given to another person as a result of the process. (repeated from (e) above
• The goal is the (immeasurable) service of human life rather than achieving (measurable) outcomes.
• Distinguish the dying process from the reality and finality of the event of death, and the difference between prognosis and diagnosis.
• Acknowledge the finality and reality of death: that is, when the whole, unified organism is no longer alive.
• Although brain death can be verified death is ultimately a mystery not amenable to direct identification but followed by disintegration of the body which is observable as irreversible loss of circulation or irreversible loss of all brain function.
• Our hope lies not in our mortal bodies but in the everlasting faithfulness of God who does not abandon us in life or in death.
• The pastoral ministry of prayer includes organ donors, organ recipients, families, the healthcare teams and others for whom the Church promises solidarity.
Practical pastoral considerations
• Chaplain/pastoral carer to be involved in decision making as part of the team where appropriate.
• Training, skills and experience in the specific area of organ donation.
• Ready access to symbols, rites and rituals of the Church, where relevant.
• Physical comfort including privacy and respect wherever the family are waiting.
• Care of the deceased person’s body so it is never regarded as ‘property’.
• Care taken to explain the process of the person being transferred to the operating room, the length of time, and ready access to reliable information.
• Support for those who decide against organ donation.
Grief and bereavement
• Grief following death can be compounded when people are unsure whether or not they have acted wrongly in donating the person’s organs, especially if they believe that death did not really occur prior to removal of organs.
• Grief can be ameliorated when people are confident they have acted wisely and in good faith, derived from timely, factual information.
• Careful assessment of the need for ongoing bereavement support and appropriate referral.
Increased organ donation
The Church has a significant priestly, pastoral and educative role in every aspect of organ donation. With adequate preparation and relevant skills pastoral carers can influence people’s confidence that organ donation is approached holistically. Pastoral carers can offer reassurance that throughout the whole process the focus will be on the person, so that an otherwise mechanical intervention is humanised.