Imogen Constantine is able to live a normal teenage life after a life-changing liver transplant. Photo / Greg Bowker
Imogen Constantine is able to live a normal teenage life after a life-changing liver transplant. Photo / Greg Bowker
An Auckland teenager's "second chance" at life has been held up as another reason for New Zealand to tackle its poor rate of organ donors.
Nine months after Imogen Constantine had a life-changing liver transplant, the North Shore 15-year-old is thriving and able to live a normal teenage life after fighting against auto-immune liver disease.
But her success story is one of the few to be told in New Zealand.
Stretched emergency departments, a lack of appropriate places for medics to start donor conversations with grieving families and the non-binding option on driver licences are among the reasons cited for this country's ongoing low number of organ donors.
According to data from the International Registry of Organ Donation and Transplantation, New Zealand ranks 27th in the world, just above Iran, the Czech Republic and Israel.
World leader Spain has 36 donors per million population - more than three times New Zealand's rate of 10.2. And that is despite deceased organ donations almost doubling in her between 2005-15, from 29 to 53.
With the Ministry of Health investigating why numbers here are so low, Constantine's mother, Alexandra, has expressed huge thanks to the family who gave her daughter a new chance at life.
"The decision they made. A family has made a decision a the time when they were in their own sadness and grief, that has basically given our family a second chance," Constantine said.
"The level of appreciation we have and to try and put that into words - there really aren't any words that would ever seem enough to express the level of gratitude we have.
"It was like giving us a new start. Imogen was able to start living a normal teenage life and look forward to having a future with normal prospects.
"At the time she said something along the lines of: 'Now I get to do what I choose, not what the disease chooses for me'."
Imogen spent seven months on a waiting list for a donor kidney - during which time her health and lifestyle deteriorated.
"By then she was becoming unwell," her mother said. "It affected her social relationships, she wasn't able to do normal teenage stuff. It was a scary time and we were aware that the donor rate in New Zealand was really low. Luckily for us it happened, and we will always be grateful."
Last week public submissions were released on how more organs from deceased Kiwis can be passed on for transplants. The submissions have been made public two years after the Ministry of Health started a major review of how the sensitive topic is being handled - sparked by Kiwi organ donation rates lagging way behind international standards.
District Health Board staff, Crown entity officials and organ recipients were are among those who gave feedback to the Ministry - with the response including a list of basic difficulties faced by emergency department (ED) staff when trying to initiate organ donation opportunities - including a "lack of appropriate rooms for the family donation conversation" and "the time-pressured nature of EDs".
Also under the microscope is whether the existing driver licence system needs to be changed, potentially swapped for a national donor registry, amid concerns the "donor" option on licences is widely misunderstood.
Motorists have the option of declaring themselves a donor each time they renew their driving licence but that declaration is only an indication of intent and not an official registration.
Instead, Organ Donation New Zealand said, it is more important for families to discuss their preferences in advance - and specifically discuss what organs or tissues a person consents to donating.
Constantine says although the non-binding nature of the driver licence preference is gradually being understood more widely, more families need to have conversations in advance.
"At the end of the day, it's families who have the final say," she said.
The submissions also reveal support for further specialist training of clinical staff and a majority calling for increased funding for donor and transplant hospitals.
Former All Blacks sensation and kidney transplant recipient Jonah Lomu campaigned for organ donation before his death two years ago. Photo / file
The medical head of Palmerston North Hospital's intensive care unit, Daniel Nistor, stressed there needs to be more thought given to those on the front line - medical staff and next of kin of the dying.
"In the entire field of medicine there is no other conversation that is more difficult or complex as the organ donation one," Nistor wrote in his submission.
"Not only is the clinician completing a most daunting task - telling a family that their loved one has died - but now, in this acute moment of crisis, he has to supersede this and ask them something absurd: To modify their mourning, after the ritual of dying and quickly decide if they would donate their loved one's organs."
Canterbury DHB's general manager of community and public health, Evon Currie, also pointed to the need for a more suitable way of broaching the issue of donation.
"Conversations about donation in an ED setting are, in most instances, inappropriate," Currie submitted. "Public education (and debate) is pivotal."
New Zealand Medical Association chairman Dr Stephen Child also said simply getting people to talk about organ donation is vital.
"We [NZMA] submit that a societal change in attitude towards organ donation is likely to have the largest influence on increasing the rates of organ donation, and increased public discussion of its benefits is needed," Child wrote.
"We believe that it would be considerably easier for clinical staff, in all treatment settings, to approach family members about organ donation in a more permissive ethos ... We agree that no one should overrule family objections if they happen, but contend that the issue needs a reset, whereby the default position becomes donation, not refusal."
Jenna Crockett, wife of All Black Wyatt, also made a submission to the Ministry. She underwent a kidney transplant in July 2015 - two months before her husband went to the UK to help the men in black defend the Rugby World Cup.
Crockett pointed to alerting Kiwis to the non-binding nature of the driver licence declaration.
"Public awareness and education is hugely important! I feel New Zealanders are keen to donate but are unaware that the system in regards to driver licences is not legit/flawed," Crockett wrote.
A spokeswoman for Minister of Health Dr Jonathan Coleman's office said he was not able to comment on the situation - and could not until the national strategy has been released, which is expected to be in the middle of this year.
The Ministry of Health's group manager service commissioning, Clare Perry, said the Ministry was working on a draft strategy around increasing deceased organ donation.
"Submissions received on the Increasing Rates of Deceased Organ Donation consultation Document are being used to inform the development of the draft strategy," Perry said.
"Once the draft strategy has been finalised, it will be provided to the Health Minister for his consideration."
2015: 53 2014: 46 2013: 36 2012: 38 2005: 29 *Source: Organ Donation New Zealand
ORGANS TRANSPLANTED IN NEW ZEALAND LAST YEAR
Kidney**: 147 Liver**: 48 Lung: 23 Heart: 12 Pancreas: 3 *Source: Organ Donation New Zealand **Liver and kidney transplants include living and dead donors
FACTS ABOUT ORGAN DONATION
• The "donor" option on NZ driver licences is only an indication of someone's wishes, not an official organ donation register. • People of all ages can be considered for donation. At the time of death, age and medical condition determines which organs and tissues can be donated. • In New Zealand you can choose to donate your heart, lungs, pancreas, liver and kidneys. • Upon death, a health professional will ask family if they know whether you wanted to be a donor. This is why it's important to have a conversation with family in advance. • Organ donation can occur in less than one per cent of deaths. *Source: Organ Donation New Zealand
