Organ Donation – When the Decision is Made (Part One)

My husband is alive and well today because of the generosity of a donor and their family. If they hadn’t agreed to organ donation, my husband may not have survived long enough for another liver to become available.

And we are eternally grateful every minute of every day for our organ donor, their family’s decision and the marvelous professional teams that make it happen.

Just one organ and tissue donor can save ten or more lives – yet only 1% of all hospital deaths are in circumstances that medically permit organ donation to provide organs. With over 1600 people on transplant waiting lists at any one time, we all need to think about being a donor if the extremely rare opportunity ever arose.

As a result of our experience, I have decided to write a series of posts on the organ and tissue donation and transplant process.

I will be talking with the people who are involved in every step of the way…to find out more about what happens behind the scenes.

As a recipient, you only know about a donor organ being available when you get the call to come into the hospital…but the process actually starts up to 48 hours before that particular call is made.

For the first post in this series, we returned to the Austin Hospital, where my husband had his liver transplant, and met with Donation Specialist Nursing Coordinator Leanne McEvoy and Intensive Care Physician Doctor Cameron Knott.

They kindly gave some of their very valuable time talking to us about their roles in the organ donation process.

So grab a cuppa, get comfy and read on for Part One….

SARAH – Leanne, what exactly is your role here at the Austin?

LM – I am a DonateLife Donation Nursing Specialist Co-ordinator. I work within a team called the Austin Tissue and Organ Donation Team. So I am one of more than 70 DonateLife Victoria medical, nursing and professional staff in 21 locations state wide.

DonateLife Victoria is Victoria’s state-based organ and tissue donation service. As part of Australia’s organ and tissue donation reform program that began in 2009, a national DonateLife network was established from pre-existing separate services to ensure a consistent national approach aimed at increasing donation rates across the country.

There were 9 measures put in place, one of which was having donation specialists embedded in hospitals to improve processes and raising awareness.

I have been in the role since 2009 …since day one of the new body!

SARAH – Leanne – in your day to day job, which is an average day for you?

LM – It is not a straight answer, hours can vary…yesterday I was driving to Warragul to raise awareness at a Health and Welfare Expo. Last week, there were two donor cases we were working with at the Austin.

SARAH -So you only work with Donor cases here at the Austin?

LM – No actually …there are Donation Specialist Nursing Coordinators based in the central transplant hospitals (the Austin, Royal Melbourne, the Alfred and Monash), as well as some at our central Agency in Carlton, we may travel anywhere in Victoria and Tasmania!

Basically our role is the first end of transplantation which involves making sure that families are given the opportunity to make an informed decision about donation if their loved one is in that situation, and supporting them through that process.

SARAH – So you are the first point of call?

LM – Yes, we have all been through specialist training, specifically to help with organ and tissue donation conversations to support families to make an enduring decision.

JAS – Guess that can be pretty tough?

LM – Yes it can be, but it can be great to empower families. It’s not about the Yes or No; it’s about giving them all the information about donation and enable them to make the best decision for them at that time and for years afterwards.

JAS – but do they have a short amount of time to decide?

CK – It is as long as it takes. They have just been told their loved one is dying. We only become involved as donation specialists after someone has been told their loved one is dying and that the start of their care around death is beginning.

SARAH – So you really come in at the most stressful point maybe in the whole process

CM – It can be, but sometimes it can be a sense of release for the family. I think the most important thing is that everyone is aware that End of Life Care is beginning. We don’t get involved with the family before then. We go in and talk with the family as a separate entity in the care conversation effectively removing potential conflict of interest.

The treating teams are also pretty exhausted from the process of helping the family to this point….. we are the specialists, well equipped to give all the information that is needed about donations.

SARAH- You really need to be well informed from the start, to be able to present them to the family in a calm way

CK – the important thing is that people in this situation will now sit and listen to a conversation about donation.

JAS – is that because there is more awareness about donation?

CK – I think there is more awareness, and oftentimes, we have families come up early on and say that their loved one is an organ donor.

SARAH – Is that happening more often now?

CK – Yes

CK – we will say thank you for that, but at this point in the individual’s care, the most important thing is treatment and recovery. If it then comes to the point that a person does start End of Life Care, then that’s when we would become involved again.

SARAH – So End of Life Care is basically is making a person as comfortable as possible…

CK – and thinking about the rituals around that’s person’s End of Life…taking into account their spiritual dimensions, family dimensions, cultural dimensions.

SARAH – so there is a whole procedure set up to that starts once End of Care is started?

LM – There is a change from the active management of life-threatening problems to acknowledging death is close and providing comfort care. We try to meet the needs of the patient and family.

CK – and choosing a time for the machines to be taken away. What we call “withdrawal of cardiorespiratory support”. But the care of the individual always continues.

SARAH – You both have medical backgrounds?

CK – I am an Intensive Care Specialist, so I am a doctor.

SARAH – How long have you been at the Austin for?

CK – I started my time at the Austin as a medical student back in 1998. And I was just telling Professor Bob Jones that it has been 16 years since I stood in an organ donor operation with him. He said “We are both too old for this now!”

So I think that’s’ when I started to be interested in that process.

SARAH –  how did you move from being general medical into the ICU and donations?

CK – when one practices in Intensive Care, you spend a lot of time thinking about death and dying. And what’s possible for the person in the bed, what’s possible for their recovery, working out when that recovery is not possible and if that recovery is suitable for them as a person, in terms of their quality of life and quantity of life.

There are many things that intensive care specialists have to think about, but it’s always directed at what’s right for this person in front of us, in this bed, in this point in time.

So that’s when I am wearing my intensive care hat – I always try to get people better. And if not able to, I am trying to make then comfortable, or give them their best chance of achieving their life goals or healthcare goals as best I can.

And if that goal in End of Life Care may involve becoming an organ donor, then I involve my donation specialist colleagues to provide that opportunity.

JAS – are there many doctors involved in the decision to activated End of Life Care?

CK – Yes, for instance if you were admitted into Intensive Care with a liver problem, you would be looked after by the liver specialists, and also the intensive care specialists. If you had other issues that needed specialist help, then we would have other specialist teams involved. And at the end of the day, we look after you. The Intensive Care team effectively co-ordinate and run the care, with support from all of the supporting teams.

If you survive intensive care and you can be moved to a ward, then the team that has been looking after you in hospital, such as the liver team, they would continue to look after you out on the ward.

If you are considered to be dying, and need to be made comfortable, then the treating teams are all involved in the decision making. No-one makes decisions in a vacuum.

JAS – Not sure if you can tell me this, but is there are high percentage of people die in Intensive Care?

CK – I understand about 12% of people may die in ICU….and in a hospital about 20% die.

LM – they are the sickest patients in the hospital.

CK – They are the sickest but they are the most likely to have a chance of recovery with the most intensive care.

SARAH – Jas’s donor died of an aneurysm…does that mean they were in ICU?

LM – To be an organ donor, you are usually in ICU connected to a ventilator and in a situation where active treatment is futile. Rarely, it might be in the emergency department, but we try to bring patients to the ICU to give families time.

There are two pathways for organ donation. One is the Brain Death pathway. That is when someone has something like an aneurysm and brain function has irreversibly ceased – the person has died on the ventilator. Which is quite a difficult concept, and I could talk for hours about it but it basically means someone has died on the ventilator but their body and its organs are being supported artificially.

The other pathway is known as Circulatory Death – that means that the heart and circulation stop irreversibly, as a result of having supporting intensive care treatment withdrawn.   Specialists would have determined that there is nothing more the ICU or other teams can do for the patient concerned to recover to their quality of life. Palliative care or end-of-life care is the next treatment. So that’s when they remove the breathing tube and all the medications.

CK – This process permits a natural death from that point in time.

JAS – Then how do you go about the next step?

LM – We raise donation with the family, to see if that sits well with them and what either the patient wanted, or the family thinks they would want. We will always check the organ donor register before we talk to families, this helps with their decision making because many families haven’t had the conversation about donation so if the person is registered they are often relieved to know this.

SARAH – Does that happen often where the family doesn’t know?

LM – This is happening less often. We know nationally that when families do know a loved one’s wishes for donation, 94% of the time donation proceeds.

CK – So that’s one of the big messages from DonateLife this year is “Have the Chat that saves Lives”…

From my point of view as an Intensive Care Specialist as well as a Donation Specialist, it’s not just about organ donation, but it’s about what is important to you if you come into intensive care, what are the important things in your life that you want to achieve, such as being an organ donor.

In many ways it is similar, particularly for older people or people with a long term illness, with when they don’t want to be in a situation where they are incapacitated by an illness. If their family know their wishes, then it’s incredibly much easier for them to confirm your wishes and decision if you have already considered the facts, registered your decision on being a donor in advance and discussed it with your family.

SARAH – I think it must give a little bit of comfort in a weird way to know that your wishes have been noted

LM – and empowering

CK – You know that someone is making decisions for you and they know what you would want.

SARAH – so it’s stored in a central database somewhere?

CK – That will be the aim in the future for a new area of advanced care planning. It is a way for people to formally say this is what I want if I am ever in that situation.

SARAH – Does it include being able to say that I want to be a donor?

CK – For organ and tissue donation, that is the current role of the Australian Organ Donor Registry.

LM – We encourage all Australians to discover the facts about donation, decide if this is something you would want to do by registering your wishes, and importantly to discuss this with those closest to you, because in the end they are the ones who will give the final ok.

Tune in tomorrow for Part Two of this informative insight into the organ donation process.

If you have any questions, queries, or would just like to share your story, please don’t hesitate to comment below, or contact me directly!

For more info on organ and tissue donation, click here to visit the DonateLife website!