Organ donation series: Family's gifts of life bring comfort after death

There was no warning. Bigwood's mother, Mary Crawford, collapsed on the evening of Valentine's Day 2005, just three months after marrying her new husband, Tony Eastmure.

The 48-year-old regained consciousness briefly but never stabilised and her condition deteriorated rapidly. Bigwood, then 27, took the first available flight home to Wellington. Three days later, Crawford's life support was turned off.

What followed is among the hardest conversations a family will ever have — and one most families thankfully won't.

Crawford's children and other family and a friend sat in the hospital family room as a donor co-ordinator from Organ Donation New Zealand came to talk to them.

Bigwood says everything happened quickly once it became clear her mother would not recover. "Once the brain team had done all the tests and determined she was brain-dead, the donor team came into the family room to raise the question of donation, ask whether we knew what her wishes were and, if so, whether we would be willing to go ahead."

Crawford was an "ideal" organ donor — clinically brain dead but with all her organs functioning. Bigwood says she and her younger brother and sister all knew it was what their mum would have wanted. "She had always been someone who wanted to help people out," Bigwood says. "For her it would have been a case of she didn't need them and other people did."

We were able to take a really terrible situation for us and turn it around and get some good out of it. Crawford had indicated on her driver's licence that she wanted to be a donor, but, as the family found out, that was largely irrelevant. "That really surprised us — it does not matter whether you have it on your driver's licence or not, it is the wishes of the family at the time."

Bigwood and her siblings were at the hospital with Eastmure, Crawford's sister, best friend and mother. The organ donation team laid out all the possibilities of the organs that could be donated. The family could choose to go ahead with all, or just some. "It's almost like a kind of wishlist for them."

The family decided they would donate only organs and tissue they were all comfortable with. "With the corneas we asked if it would mean she looked like she had no eyes when we did the open casket. They were good at explaining it is not the entire eye they take, it is just part of it and you can't even tell ... They were good at giving as much information as you could possibly want."

Crawford's organs went to six recipients and her corneas restored the sight of two people. Having donated the organs changed the way Bigwood grieved for her mum. "I've heard other people talk about how they got comfort from knowing that part of their loved one was living on but that's not at all how it was for me. I've spoken to my sister and it is not how it is for her, either.

"It's more the fact that we were able to take a really terrible situation for us and turn it around and get some good out of it."The magnitude of what the donation meant hit home at her mum's funeral when Bigwood saw the people who came to pay tribute to her. She imagined that multiplied across the people who had been given a new chance at life.

"A funeral is truly just a snapshot of someone's life. It doesn't account for anywhere near the actual number of people who are affected by a person in their life. I took great comfort from knowing that six people would affect at least 100 people each who would then affect people, who would then affect people. The ripple effect from our group decision to donate was a huge comfort for me."

Although 10 years have passed, Bigwood says she has no real desire to meet the people who received her mum's organs. "Part of it is because I don't see it as Mum still being there. But I also don't want the recipients to feel like they have to be proving themselves.

"We got a letter from one of the recipients and she has Down syndrome, I believe. I think she may have received the heart. She wrote a letter to say how thankful she was. It was really nice but at the same time I don't feel the need for that. It was a gift we gave. We don't expect anything back from it."

Bigwood wants to see more education about the donation process so that people better understand how it works. She says it can be a bit of a "Frankenstein" situation — families imagine the worst and worry what their loved one's body will look like after donating organs. She wants more information for young people at the time they first get a licence and are asked about donation. She regularly talks to people about organ donation, even though it makes many people squirm.

"If there was better education, a register whereby the donor team could go to the family and say 'did you know ... ' then people are less likely to react in a way when they're still desperately trying to protect their loved one." The family is waiting for Crawford's sister to return from Britain, to mark the 10th anniversary of her death. Bigwood says it is likely they will plant an oak tree in her memory.

She says if the recipients of her mother's organs could hear one message, she would like it to be this: "Don't feel you have to achieve greatness because of this one event. It happened and it is undoubtedly life-changing but it doesn't define you. You aren't this one thing. Be a good person, enjoy your life and make sure as many people as possible know about organ donation."

Licence consent is not enough to donate

Associate Health Minister Peter Dunne says many Kiwis would be surprised that ticking the "yes" box on a driver's licence application form is not enough to indicate they are a willing organ donor. Ticking the box on the application form does not count as informed consent, which is required by law before any organ donation procedure is carried out.

Because of this, consent for organ donation is almost always supplied by immediate family members. And even if someone has indicated on their licence that they want to donate, the family has the right to veto that. Dunne said: "There would be few people who, in choosing to be an organ donor would realise that consent on their licence is insufficient for their wishes to be carried out. The consent of the donor's family is required before organ removal can proceed."

He said people should discuss their wishes with their family. "In the absence of that, however, unless there are compelling clinical or cultural reasons not to proceed, I believe the donor's wishes, however expressed, should not be overridden by their family."

Conversely, if someone has not indicated they are willing to be a donor, or does not have a driver's licence, the family can still agree to donation.

Organ Donation NZ medical specialist James Judson said: "Families can and do agree to organ donation from deceased family members without the word 'donor' on the licence. In fact, quite often families do not know the deceased person's wishes and they make the best decision they can for their whole family at a time they are grieving." He said it was rare for families to veto a person's wishes.

Dunne and Health Minister Jonathan Coleman have launched a review to see if organ donation rates can be increased. The family right of veto is one of the aspects of the review. He said the possibility of an organ donor register was likely to be canvassed when Parliament debates the Private Members' Bill on organ donation, sponsored by Chris Bishop. Between 88 and 150 of about 30,000 deaths in New Zealand each year are in circumstances that allow for organ donation.

Supported through it all

When can organs be donated?

After brain death: When the patient is ventilated in any of the 24 public hospital intensive care units, has a non-survivable brain injury, and is determined to be brain dead. Donation takes place while the heart is still beating.

After circulatory death: When the patient is ventilated in one of the seven larger public hospital ICUs in New Zealand, has a devastating brain injury but is not brain dead, and has ventilation withdrawn because it has been agreed continuing therapy is not in the patient's best interests. Donation takes place after the heart has stopped.

How is brain death determined?

The patient's condition will have deteriorated and there will have been signs they are likely to be brain dead. The situation is discussed with family and separate sets of tests, using strict international guidelines, are carried out by two doctors to confirm it. The time when the second brain death assessment is completed is recorded as the time of death.

What happens next?

Intensive care staff contact Organ Donation New Zealand to discuss the possibility of organ donation. When the family has been told the patient is brain dead, an intensive care doctor starts the formal discussion about donation. If they agree, a written consent form will be obtained for the organs and tissues they are willing to donate. The coroner must also consent in cases when the death is referred to the Coroner's Office.

How is a donor matched to a recipient?

When a family agrees to donation, the ODNZ donor co-ordinator obtains detailed medical information about the donor, arranges blood testing for transmissible diseases and tissue-typing, and liaises with the various transplant teams. The teams allocate the organs and bring the prospective recipients into hospital.

How does the operation happen?

The donor co-ordinator organises the organ retrieval operation. Transplant surgical teams travel from Auckland to the hospital where the patient is being cared for. The patient is transferred to an operating room while the ventilator and heart beat continue. The operation is carried out like any other surgery, including suturing and dressing incisions at the end. The health professionals treat the patient with care, dignity and respect at all times. Kidney transplants are done at Auckland, Wellington and Christchurch hospitals. All others are at Auckland and Starship hospitals.

Does donation affect the funeral process?

After organs are retrieved, the family can spend time with the donor if they want to. Donation does not interfere with funeral arrangements, including an open casket or taking a body home.

What support is available for donor families?

The donor co-ordinator provides information and support to the family of the donor and will often have met the family before the operation. Afterwards, the family receives a letter of thanks which includes general information about the recipients, such as "the heart was transplanted to a man in his 40s and the liver recipient was a woman in her 20s". The family also receives a booklet providing information about brain death, organ donation, transplantation and the grief process. Communication is continued for many months, or even years for some families.

Can donor families check on the recipients?

Confidentiality is strictly maintained. Donor families can contact the donor co-ordinator at any time to find out the progress of the recipients. Recipients are able to write an anonymous letter of thanks to the donor family. These letters are forwarded through ODNZ to the donor family if they wish to receive them. Donor families are also able to write to recipients and these letters are handled in the same way.

How many organ donations were there last year?

In 2014, there were 46 organ donors in New Zealand: 40 after brain death and six after circulatory death. They resulted in 140 transplants (an average of three transplants for each donor).

Tissue donation restores sight, heals hearts and saves burn victims

Organ donation is limited to specific circumstances but tissue donation is far more common after people die.
Eye, heart valve and skin tissue are all donated and transplanted. Tissue-only donation can be facilitated from those who die in general wards, hospices, aged-care facilities and from bodies in funeral homes and mortuaries.

The main types are:

People of all ages are potential tissue donors. Age and medical history will determine which tissues can be donated.

Tissues are removed with the same care, dignity and respect as any other medical procedure and this can take place a number of hours after death. Donation does not interfere with funeral arrangements, including having an open casket, or having a family member at home.

Last year, there were 174 eye donors, 34 heart valve donors and 13 skin donors in New Zealand.

Susan Edmunds - Herald on Sunday