The hardest conversation
In the second instalment of ‘‘Life out of Death’’, a special series examining organ donation, Aaron Leaman talks with intensive care staff on how they approach the topic of donating with families.
For a person whose career has focused on mending and healing, there’s one thing Dr Annette Forrest doesn’t mind breaking: taboos.
The Waikato Hospital intensivist (specialist in critical care) is at the proverbial coalface when it comes to discussions about organ donation.
For a person to donate their organs, they must be in a hospital intensive care unit, on a breathing machine, typically with catastrophic brain injuries.
It’s in this environment, where families can find themselves at their lowest ebb, that Forrest and colleagues raise the prospect of organ donation.
It’s a conversation that requires skill, empathy – and timing.
Organ donation is rarely discussed in the first meeting with families, Forrest explains.
‘‘You have to build up a certain amount of trust and rapport before you have this conversation,’’ she said.
New Zealand’s deceased organ donation rates have been on the increase in recent years, up from 38 in 2012 to 61 in 2016.
Organ Donation New Zealand medical specialist Dr James Judson said the increase is the result of a quality improvement programme rolled out across the country’s 24 public hospital intensive care units (ICUS).
The programme started in 2011 but the seed was planted in 2008 when a death audit database was set up.
The database showed large variations in organ donations between the ICUS.
A key part of the quality improvement programme is increasing awareness among ICU staff of the potential for donation as well as forging strong links between hospitals and Organ Donation NZ.
Families agree to organ donation about 50 to 60 per cent of the time.
‘‘The reason we’re getting more donors is families are being asked more often,’’ Judson said.
‘‘Families are still saying yes or no at about the same rate.’’
Forrest said great care is taken to ensure families are given time to make an informed decision.
Compassion is a guiding principle for all ICU staff members.
‘‘We treat each patient as if they were a family member,’’ Forrest said.
‘‘Family have wishes and we go along with those wishes.
‘‘Somebody has a birthday and they don’t want the donation to be done on the birthday so we don’t do it, we accommodate it.’’
While death isn’t a typical dinner table conversation, Forrest advocates for families to discuss organ donation and know their loved ones’ wishes.
Simply noting ‘‘donor’’ on a person’s driver’s licence isn’t enough.
"You have to build up a certain amount of trust and rapport before you have this conversation." Annette Forrest
‘‘The biggest thing is, to my mind, to why things are improving, is people are being encouraged to have the conversation with their loved ones.
‘‘Throughout New Zealand, both locally and nationally, we are trying to make people aware that it’s not wrong to have these conversations.
‘‘It’s trying to break that taboo,’’ she said.
Waikato Hospital intensivist Dr Nick Barnes said conversations with families about organ donation is always easier if the wishes of loved ones are known.
He describes it as one less mental obstacle families have to negotiate.
Unfamiliarity with organ donation, rather than any formal objection to the process, can prove the biggest sticking point for many.
‘‘It’s an unfamiliarity with the fact that people can die and still appear alive,’’ Barnes said.
‘‘I often explain that we note the time of death as the time we establish someone is brain dead and I say to them they probably wouldn’t know anyone who became dead in this way because most of us die when our heart stops.’’
Waikato Hospital registered nurse Nikki Morrow works as a link nurse, supporting the bedside nurse and the family through the donation process.
Her position involves answering families’ questions, reiterating what was said at family meetings, and dispelling myths people might have about organ donation.
The role often sees her work 12-hour stints but continuity of care is vital. She describes her job as a privilege. ‘‘Families love sharing stories with you and you get a real sense of who their loved ones are.
‘‘We’re in a unique position of being able to spend that time with families during their loved ones’ last hours of life,’’ Morrow said.