Assisting families with the process of organ donation: helping families through the process of organ donation is a vital role, which demands a range of nursing skills.

BEING INVOLVED with grieving donor families is at once the hardest and most rewarding aspect of registered nurse Janice Langlands' role as one of the country's two national donor co-ordinators, both based at Green Lane Hospital.

Once a person has been declared brain dead and their family has consented to organ donation, it is Langlands' role to provide support and information and answer any questions. "We reassure families that someone is going to be with their loved one through the organ retrieval process and that their family member will be treated with care and respect," she said.

It requires tact, empathy, compassion, understanding and nursing knowledge to be able to talk with families, when they are in the very first stages of grieving. It is that combination of skills that provides the most challenge and the most reward for Langlands. After nearly 12 years in the role, she still thinks "I could or should have done it better".

She has undertaken a bereavement counselling course but stresses she is not a grief counsellor and says the most important skill is the ability to listen.

Though a dramatic part of her role, it is just one aspect of her job. She has a colleague, also an RN, Dawn Kelly, who was the country's first liver recipient co-ordinator. Both are involved in educating intensive care and operating theatre nurses around the country--"helping them to be more comfortable" when they are involved in any aspect of an organ donation, eg being with the family after they have agreed to organ donation or being involved in organ retrieval from a brain dead person. "Unfortunately most of the people involved are involved only in the sad side of this situation, they don't see the successful recipients of organ transplantation," Langlands said.

The study days for nurses include updates on organ donation, education on brain death, how to support families, the process of organ retrieval and operating theatre procedures. A donor family also shares their experience of the process.

Each ICU in the country has a link nurse. The role, established in 1997, can include liaision with the organ retrieval team and supporting families and other staff through the organ donation process. Langlands has a great deal of respect for the link nurses.

Another aspect of Langlands' and Kelly's role is follow up with donor families. The donor co-ordinators write to donor families and thank them on behalf of the recipient families. Six to eight weeks after the death, they ring the families and ask if they would like any further information or contact. "Confidentiality and anonymity are always maintained. Sometimes a recipient family will write and thank the donor family. We ask the donor family if they would like to receive that letter. There are also co-ordinators who work with recipients and their families."

Within 48 hours of an organ retrieval, the co-ordinators, one of whom is always on call 24 hous a day, contact the ICU and operating theatre staff involved and thank them and tell them of the success of the transplant and some general information about the recipient. "Staff are always pleased to get this information and we think it can be helpful to those involved."

The position of national donor co-ordinator was established in 1987 and Langlands says her nursing education and experience are integral to her role. "We've got to be able to understand the significance of full medical patient histories. We need to be able to ask the right questions to get more information. The transplant team makes its decision on the information we get from an ICU, so we need to know that all the relevant information is there. We need to know the workings of hospitals and how to get things done."

New Zealand's organ donor rates in 2003 were 10 per million population, with Australia's rate at nine per million. In 2002, Spain at 33.7 per million had the highest rate and Greece, at 5.9 per million had the lowest. In July last year, an estimated 300 people in New Zealand were waiting for a kidney transplant, with the average waiting time between two and three years and 12 people were waiting an average of 10 months for a heart transplant. (1)

Langlands has written a submission, which has been forwarded to the Ministry of Health, calling for $425,250 more funding to expand the service. Among the goals in the submission is to ensure all families of potential donors are offered the option of donation and that potential donors are managed in ICUs so the greatest number of organs can be retrieved. In New Zealand the family has the final say over whether organs will be donated.

Kidney transplants in New Zealand began in 1965 and are now done at Auckland, Wellington and Christchurch Hospitals. Heart transplants began at Green Lane Hospital in 1987, and in 1989 New Zealand began sending donated livers to Australia for transplants. These were also used for New Zealanders who had to travel to that country for the operation. In 1993 lung transplants began at Green Lane Hospital and in 1998 liver and pancreas transplants began at Auckland Hospital. In 2002 liver transplants for children under seven began at Auckland Hospital.

Late last year the Health Select Committee made a number of recommendations on organ donation, including increased funding for education and support for health professionals, and the development of nationally consistent protocols for gaining consent from next of kin.

Whatever the outcome of the plea for more funds and the Health Select Committee's recommendations, Langlands and Kelly will continue their crucial role. They would like to expand their services but Langlands says "we are doing the maximum we can with the funding we've got".

REFERENCES

(1)) Langlands, J. (2003) Organ Donation in New Zealand. A proposal prepared for the Ministry of Health. Auckland: National Donor Co-rdination Office.