Organ donation: 'Have that conversation with family', urges top doctor

Until 2023, she was head of the Intensive Care Unit (ICU) at University Hospital Limerick, where she was one of the many doctors who would have done everything to save the lives of patients in their care.

She was also the person who had to tell families their loved one wasn't going to make it.

She had another role — asking families for their loved one’s organs.

“So, you wouldn't want to be in a position to have to meet someone like me, in one sense, because it means you're very sick,” she says.

“In another sense, you would have wanted to meet me because if I could save you, I would do everything I could, and I as part of the teams in ICU over the years, I did help save a lot of people.”

While she has stepped away from that role, she is now the HSE’s clinical lead on organ donation.

As both a practitioner and an advocate, she is ideally placed to understand the various nuances around organ donation, or “gifts”, as she prefers to call them.

“People do come in very unwell, and while many thankfully recover, sadly some do not.

“We, as time progresses, explain to the family about the various tests on their loved one’s brain we would undertake.

“We would introduce them to the concept of death, in particular brain death, and we would leave them to themselves to try and accept the inevitability of a diagnosis of death.

“Obviously, families are supported in this but often, they need time alone to digest the news and what lies ahead.

“People generally ask you, ‘what happens now?'."

Handling the question around organ donation is approached as sensitively as possible.

“At some stage, and at a moment considered appropriate, we would say that it could be possible for their loved one to be an organ donor, and we would then ask if it was something they would have wanted,” Dr Motherway says.

The conversation is one people should be having, she adds.

It's a bit like making a will.

“Essentially, it’s where people know what they want at the end of life and tell their loved ones.

“It is not an easy conversation to have as a family when someone’s wishes just aren’t known.”

Families play key role

Families play a key role in the decisions around organ donation, as evidenced in a 2023 data report by the National Office of Clinical Audit which presented all reasons for non-donation outcomes for patients who died in six participating ICUs in 2023.

One of the main reasons eligible patients did not become organ donors was because their families did not consent to it.

Of 145 patients eligible for organ donation in the 2023 audit, families were approached in 112 cases and gave their consent in 73 cases.

Of the reasons they did not give their consent, in 26% of cases, their family was either “divided over the decision” or “unsure about the patient's wishes”.

In 10% of cases, the family felt their loved one had “been through enough” and in 3% of cases, the family was “uncomfortable” with the organ donation process.

Dr Motherway says: “Some people will say no, and I always respect that, because they know their relatives, they know what they would have wanted.

But in some cases, families just aren't sure of what their loved one wanted, so it's really important they know.

“If they do want to offer their loved ones organs, then we will refer them to Organ Donation Transplant Ireland.

“The transplant teams will then decide what gifts can be offered to people, predominantly in this country.”

Once an organ has been accepted for a transplant patient, a specialist transplant surgical team will be asked to travel to the hospital to carry out the operation.

It is carried out by a specialist transplant team from the different transplant centres in Dublin — the Mater Hospital for heart and lung transplants, St Vincent’s Hospital for liver and pancreas transplants and Beaumont Hospital for kidney transplants

After the operation, the transplant team will transport the organ as soon as possible to the hospital where the donor recipient is being prepared for their operation.

Of concern to Dr Motherway is the extent to which demand for organs far outstrips supply.

Last year, for instance, there were 282 transplants but there were about 500 people on waiting lists for a transplant.

New legislation

With nearly 8,000 organ transplants completed since Ireland’s first kidney transplant in 1963, there are hopes the numbers could soon rise with the Human Tissue Bill 2024.

As well as providing a legislative framework for the retention and disposal of organs in postmortem examinations and a statutory framework for organ donation and transplant services, this legislation introduces a soft opt-out system of consent for organ donation.

This means consent for organ donation will be considered as given unless a person expressly registers their wish not to become an organ donor.

“It is important to note families will still determine what happens,” Dr Motherway says.

“If you don't opt out, your family will be the people who will tell us whether we can proceed or not.

“We will be able to tell them when someone is not on the register, and that they haven’t opted out, but we will still not be able to do anything without their consent.

“So that's why having the conversation between family members around the whole issue of organ donation is still really important. "

“Organ donation is bittersweet,” she says.

“The sudden loss of a life is heartbreaking.

But I know for those left behind the knowledge that their organs live on in another person can be a source of great comfort and hope in their grief.

“It can bring on feelings of hope and pride and it can be a tremendous help with healing the grief they have.”