Submission to Health Select Committee

 Human Tissue (Organ Donation) Amendment Bill

•  Introduction

•  About CNA(NZ) Inc: The College of Nurses Aotearoa (NZ) is a professional organisation which focuses entirely on the professional issues of nursing and on the health of New Zealand 's communities.

•  Advocacy: The College of Nurses Aotearoa has, as one of its purposes, to identify, examine and take action on issues of significance to nursing practice and the health of the New Zealand community. It advocates strongly for the right of the individual to be actively involved in key decision-making about their health.

•  Benefiting all: The College of Nurses Aotearoa supports the Human Tissue (organ Donation) Amendment Bill. We believe that the successful passage of this amendment bill will benefit all the people of New Zealand .

•  Rights

•  Rights are central: The College of Nurses Aotearoa submits that there is a need for all New Zealanders to be able to register their wishes about organ donation, be it for or against, and have this decision legally binding so that it cannot be overridden by family or whanau.

•  Inconsistency: This amendment bill removes the present inconsistency that only drivers are allowed to register a wish to be an organ donor. The College of Nurses Aotearoa strongly supports the establishment of a new register on which all adults (with few exceptions) can register their legally binding wish to be, or objection to being, an organ donor. The current system is ineffective and contributes to the low annual donation figures, which are some of the worst in the developed world.

•  Expression: Every New Zealander, under the Bill of Rights (1990) has the right of freedom of expression. The College of Nurses Aotearoa advocates strongly for this and objects to the unprecedented hurdles being proposed for registering one's wishes. The current amendment bill Clause 7, section 3d (2c) states that the application for registration must be witnessed by a person of standing in the community. This will deter rather than encourage registration of wishes or objection of wishes to be a donor. We support, however, the right of adults to express their wishes orally in the presence of 2 or more witnesses during a person's last illness.

•  Consistency with other donor registers: Australia , the UK , and various States in the USA all have donor registers and none require the witnessing of registration by consenting adults . The College of Nurses Aotearoa would therefore support the registration without witness for adults who are not ‘mentally disordered' or ‘have an intellectual disability'. Consistency, particularly with the registration system in use in Australia , is our preference.

3. Provision of information:

•  Public information campaigns: The College of Nurses Aotearoa supports the appointment of a Registrar of Organ Donors, who has responsibility for ensuring public information campaigns, encouraging registration of donation wishes to take place in New Zealand . There is recent evidence to support the need for greater information since this is associated with increased donor rates ,

•  Notification of donation wishes to family/whanau: The College of Nurses Aotearoa acknowledges the discomfort that may be felt by medical and nursing staff when asking grieving families to consider organ donation. The amendment bill provides for donation wishes to be made available to health professionals in those situations where donation decisions need to be made. Knowing a person's wishes reduces some of the anticipated or actual discomfort for health professionals and family/whanau. ,

•  Law protects abusers: The College of Nurses Aotearoa supports the inclusion of Clause 9 that establishes new offences to minimise abuse of the donation system, including the provision of false information, registration under coercion, and receiving or offering payment or reward for the donation of organs. Trafficking in organs is a growing issue world-wide and deterrents are needed to prevent this occurring in New Zealand .

4 . Transferring information from the LTSA

•  Clarification of transfer process: The College of Nurses Aotearoa supports the transfer of existing information onto a new register; however, clarification of confirmation processes is required. The process in the amendment bill assumes that those already registered with the LTSA will respond to the verification of information request. Clarification around action in cases of non-response is needed.

TEN CENTRAL POINTS

•  That New Zealand must establish a centrally funded and managed register, independent of the organ Donation New Zealand organisation, to allow adults to record a legally binding decision on organ donation.

•  That the rights of New Zealanders for freedom of expression are upheld and that wishes are not overridden by family/whanau or health professionals.

•  That registration of organ donation wishes is simple.

•  That registration does not require witnessing except in certain circumstances, to keep it straightforward with no added bureaucracy.

•  That the processes put in place to register wishes or objections are subjected to review/evaluation at appropriate time periods.

•  That the registration process is consistent with others in use world-wide.

•  That public information campaigns are undertaken at least annually to raise awareness of donation and the need for donors.

•  That trafficking of organs is prevented with substantial deterrents in place to discourage such activity.

•  That clarification is made about the transfer of existing information from the LTSA to the new register.

•  That the information technology that will be developed for the register is such that compatibility with other systems is maximised.

https://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp ;

http://www.medicareaustralia.gov.au/resources/aodr/ma_1807_aodr_new_registration_or_change_of_details_170106.pdf
; http://www.organdonor.org/register.html ; https://www.donatelifecalifornia.org/register/

Dodd-McCue D, Cowherd R, Iveson A, Myer K. Family responses to donor designation in donation cases: a longitudinal study. Progress in Transplantation 2006, 16(2); 150-154

Long T, Sque M, Payne S. Information sharing: its impact on donor and nondonor families' experiences in the hospital. Progress in Transplantation 2006, 16(2); 144-149.

Opdam HI, Silvester W. Identifying the potential organ donor: an audit of hospital death. Intensive Care Medicine 2004, 30: 1390-1397

Kent, B C. Psychosocial factors influencing nurses' involvement with organ and tissue donation. International Journal of Nursing Studies, 2002, 39; 429-440.