Nurse helps families make organ donation decisions

JEANETTE Lacey is the nicest person you never want to meet. As part of a tight-knit team of four donor specialist nurses at John Hunter Hospital, it is her job to talk with grief-stricken families about the organ donation process after their loved-one has died. It is an intense, tumultuous time for the family and they are often seeking information and reassurance.

"When anyone dies suddenly, it's a tragedy," says Lacey, sitting at her desk in the third-floor office she shares with colleague Adrian Watson at the hospital. "If it's a two-year-old or someone who's 80 and been married for 60 years, there's a deep sense of loss. It's all awful, and we recognise how terrible it is.

CARING: Jeanette Lacey comforts grieving families while facilitating organ donation.   Picture: Dean Osland

CARING: Jeanette Lacey comforts grieving families while facilitating organ donation. Picture: Dean Osland

"We can't give families back their loved-one and we can't change the terrible thing that's happened to them, but what we can do is provide them with the best possible support."

Lacey is on call every second week and one weekend in five - four intensive care nurses also provide back-up relief - and when her work number flashes on her mobile phone, she knows that it is highly likely something tragic has happened. She could be at the beach with her three primary school-aged sons, grocery shopping, having a coffee with friends, or baking, which is a favourite pastime.

Once the 39-year-old arrives at the hospital from her Hamilton home, her sole focus is supporting the heartbroken family and liaising with the state donor consultant who conveys medical information to the transplant teams. Donation, when it happens, is a long process. "From the time we get called in to meet with the family, which is after the intensive care doctor has had a conversation about donation, we know it will be a minimum of 12 to 14 hours before we get to theatres, and we work on an average of about 18 hours."

All organ donors die in hospital - the majority after an accident - and shocked families are left reeling. It can take time for them to make a decision about organ donation, especially if their relative's wishes are not known. "We want to make sure people make their decision not based on myth or rumour or misinformation," Lacey says. "My job is not to influence their decision, but to be there to answer questions and offer accurate information."

Even if consent is given, a number of tests have to be completed to clear the patient for donation. It can take up to eight hours before the results of essential virology screening are known. The stability of the donor is also a factor. Once death has occurred, organ function can be affected in different ways; fluid can build up in the lungs and blood pressure can become unstable. A detailed medical history is prepared for the transplant teams. The clock is unsympathetic.

"I work with the state donor nurse consultant who is based in Sydney and alerts transplant teams once a family has given their consent," Lacey explains. "We all have a meeting [via phone] where we provide medical information and then the transplant teams make a decision about the recipients. Once they decide who the recipients will be, then the transplant surgeons will come to Newcastle with the [state] donor nurse consultant. The recipients, wherever they are in NSW, have to make their way to the Sydney hospitals and be prepped for surgery."

In NSW only three hospitals perform transplant surgery for the heart, lungs and liver - St Vincent's, Royal Prince Alfred, and the Children's Hospital at Westmead. Kidney transplants happen in many hospitals, including John Hunter Hospital (JHH has the most organ donors of any hospital in NSW, with an average of 12 to 18 a year. In 2012 there were 354 donors nationally and the numbers are gradually increasing).

"If, for example, there is a liver recipient in Victoria, then a Victorian team will fly here," explains Lacey. "Communication is everything in our job, right from the minute a patient gets admitted to hospital. Communication is what supports a family through the worst possible days of their life. It's what enables us to have conversations with them."

Lacey remains with the deceased patient from the beginning of the organ retrieval procedure until the end, which can include a family viewing; a final goodbye. Often, the families choose to stay at the hospital until the operation is completed and they sometimes have special requests. "The family might want you to hold their loved-one's hand during the procedure, or want a favourite toy car kept in their child's hand the whole time. We'll make sure we carry out their wishes; we always do what they ask. I make sure everyone in the theatre is aware."

ONE Friday night more than a decade ago, I stood for seven hours in a brightly lit operating theatre at a major Sydney hospital and observed an organ retrieval procedure for a magazine story I was writing. It was a rare glimpse of what happens after a family consents to organ donation.

The patient was a mother in her 40s. As is typical of most organ donors, her death had been unexpected. While her family was clearly shattered, they were adamant that their loved-one would have wanted to help others. A decision to donate her organs was made within a couple of hours after a tear-filled family conference.

I watched as three separate specialist teams of surgeons and nurses worked in a set order - liver, cardio-thoracic, then kidney - to prepare the organs for removal. It was delicate, painstaking work that differed little to that of other surgery: every swab and instrument that was used was accounted for; strict protocol was adhered to, to maintain a sterile environment, and white, plastic identification bands were attached to the woman's wrist and ankle. A ventilator kept her fist-sized heart beating.

At 3.30am, all the teams crowded the theatre. Conversation came to a halt as the 14 staff took up their positions. There was a respectful, eerie silence as the ventilator was switched off and the woman's heart ceased its relentless rhythm. Her organs were flushed with a clear, cold solution to preserve them in the absence of blood circulation. Once removed, the organs were inspected for any obvious sign of infection or disease, sealed in plastic bags and placed in eskies filled with slushy ice for transportation to their respective recipients. Five very sick people's lives were poised to be forever changed. I was deeply affected and joined the Australian Organ Donor Register soon after (if you wish to be a donor in NSW, this is an essential move since your wish to be an organ donor is no longer recorded on your driver's licence when you renew it).

Pivotal to the process of organ donation is the specialist nurse whose role is a combination of counsellor, medical specialist and logistics co-ordinator. "I can quite often go 16 or 18 hours without a drink or anything to eat because I haven't even noticed," says Lacey, a warm, unassuming figure, who is deeply committed to her role. "Your head is full of information. Every donation is different, every family is different. You don't know whether you're going to get bumped from theatres because an emergency trauma or obstetric case comes in. You have to work calmly and there is so much going on."

It strikes me that Lacey is never able to speak with, or get to know, the person at the centre of the process - the donor. "That's true, but I learn about them through the family," she says. "They tell me stories and describe what they were like."

What happens when the donor is a child? "I looked after a family whose child died and was the same age as one of my children, and I think at the end of the day you go home and give your kids a really big hug and be grateful for what you still have.

"I think I have a unique view of life because of what I do. I'm not scared of dying; what scares me is what happens to the people around me because I see the families," she says, her eyes teary. "That's the most difficult thing - their sense of loss."

LACEY'S husband Lachlan MacBean, who gave up full-time work three years ago to care for their children when she was appointed to the donor specialist nurse position, is "amazed" by his wife's strength.

"Families are in very vulnerable situations and it does get to her," he says. "It's a very stressful job and she does long shifts - the longest she's done in the past was 36 hours - and the empathy she has for the families . . . I have no doubt she helps them through the process."

If Lacey has to work late, MacBean will often cook her dinner and the whole family will deliver it to her at the hospital. It not only prevents Lacey from having to source her meal from a vending machine, the gesture enables the boys to see their mum - however briefly.

"When he was younger, Angus said to me once when I got called into work at night, 'I hate doughnuts' [donors]. Anything that takes you away from your family has an impact on them, but I always say to the kids, 'You're really lucky because you've still got me and I'm going to come home after this shift. This family has lost someone and it's really sad and I'm going to try and help them'."

Lacey is reluctant to be singled out as especially dedicated and focused: she emphasises the team effort that helps bring a family's wish to fruition. But friends and colleagues speak of her compassion and commitment.

During the week that we meet, there are two donors at John Hunter Hospital. The small team is extremely busy but there are never any complaints. "Organ donation is such a rare thing," Lacey offers. "We average between 12 and 16 a year, and so many lives are changed because of these people (one organ and tissue donor can save or enhance the lives of 10 or more people)."

"I always feel so humbled when I meet a family at this time because for them to consider helping someone else in the midst of their grief . . . [pause] . . . it is an amazing thing. We meet families from all walks of life and they all teach us so much about life, about acceptance and about giving. It is an absolute privilege to do what I do."

HAPPY TIMES: John Hunter Hospital Organ Donation co-ordinator Jeanette Lacey at home with her boys Rory, 9, Liam, 6, and Angus, 11.   Picture: Peter Stoop

HAPPY TIMES: John Hunter Hospital Organ Donation co-ordinator Jeanette Lacey at home with her boys Rory, 9, Liam, 6, and Angus, 11. Picture: Peter Stoop