Organ Donation
Discussions around organ donation are complex and emotive, and occur at a particularly difficult and vulnerable time for families. The organ donation conversation is important as:
This covers considerations when discussing organ donation with the family. The entire process of organ donation is covered in Organ Donation.
- Many families have:
- Little understanding of organ donation
- Not discussed their wishes with their loved one
- Participants are vulnerable
It is important that the discussion occurs sensitively:- Agreement for donation varies widely depending on who has the discussion
- Many (~35%) families who refuse organ donation later regret the decision
- Few (~5%) families who consent to organ donation later regret the decision
- It is important to offer the family the opportunity to determine what their family member would have wanted
- Organ donation is often valuable to donor families
- Family raise donation in 1/3 cases
The conversation should be deferred if it is not appropriate, i.e. prior to planning end-of-life care.
- Family raise donation in 1/3 cases
- The goal is to arrive at a decision that is:
- Proactive
Consistent with personal values and beliefs, and not dominated by the immediate circumstance. - Informed
Decision based upon fact. - Enduring
Decision that feels right in the months and years to come.
- Proactive
Giving families information gives them the opportunity to have a choice. Not giving them information takes away that choice.
The Conversation
This assumes that the end-of-life conversation has already happened, and that the family is aware that their loved one is likely to die. A break should occur between these conversations.
In patients who are:
- DBD
Then this conversation should happen after brain death testing has occurred. This necessitates a preceding conversation to discuss the results of brain death testing. - DCD
Then this conversation must happen before withdrawal of cardiorespiratory support.
Preparation:
- Donor registry status
- Family issues
Best to know in advance and raise them, particularly if there are competing value systems.- Religious values
- Other factors
- Plan approach to the meeting
Conduct:
Principles:
- Slow information delivery
- Time to make decisions
- Support to make decisions
- Sensitivity
- Introduce the donation nurse if they have not yet met
- Raise organ donation
- Emphasise that we are offering the family to choose what is right for them; not asking for or taking organs
- If the patient has registered as an organ donor, it is relevant to mention that now
- Give important information
Information that families have found helpful includes:- Organ donor registry status
- Organ donation is rare
<1% of patients who die in hospital can become organ donors. - There is a significant need for donor organs
- The reasons other donor families feel that organ donation was the right decision for them include that:
- Their loved one would have wanted to help others
- It provided an opportunity for something positive to come out of tragedy
- It allowed someone else to live a better life
- Answer questions
Discussing Concepts
This is a phrase library of concepts around transplant, organ donation, and the donation process.
Donation
Organ Donation:
- People can donate organs if they pass away in very specific circumstances
- Sometimes people register to do this while they are still alive, so that there is a record of it when they have passed
- Other times doctors will ask the family if they wish to donate
- It is always a very hard time to think about such a serious thing, but this is the only time it can happen
- Family don’t have to decide immediately and have some time to talk and think about it, but the decision does have to be made within a couple of days
- Organs that can be donated include heart, lungs, liver, kidneys, and pancreas
Tissue Donation:
- Tissue donation is different to organ donation because almost anyone can become a tissue donor, irrespective of how they died
- Tissues donation can occur some time after death and so is not as urgent
- Tissues that can be donated include:
- Cornea
Outer layer of the eye used for those blinded from disease of their own cornea. - Heart valves
To replace damaged heart valves. - Skin
Used to replace skin in those with serious burns. - Bone
- Tendons
To help repair damaged joints.
- Cornea
Organ Donation Process:
- Blood tests and sometimes x-rays or ultrasound is done to make sure the organs are healthy enough for transplant
- Sometimes, the person will receive medicine to make sure the organs stay healthy enough to transplant
- The organ will go to the next person on the waiting list who is a good fit
- You can’t choose who the organs will go to
- There’s a lot of organisation that has to happen before the organ donation goes ahead so it can take some time
Need to arrange:- The team who removes the organs
- The patients who need the organs have to come into hospital
- The teams who put in the organs into each patient
- The transport for all of these
- The donation operation:
- May take up to 6 hours, depending on how many organs are being donated
- The cut is closed up afterwards and covered with a special dressing
- The body is then taken to the hospital mortuary
- They will look different afterwards as their heart will have stopped beating
- The family can see the body afterwards if they want to
- There are no problems having an open-casket funeral after this operation
After Organ Donation:
- The family will get a call letting them know what was transplanted and how the recipients are doing
- The family can’t contact the recipients directly, but can write to them through DonateLife
- The recipients can also write to the family through DonateLife in the same way
Brain Death
Overview:
- The brain is a soft and fragile organ that is protected in the skull
- The brain keeps us alive by sending messages to all the other parts of the body to control them, and also lets us see, smell, hear, and think
- If our brain very badly damaged then it can swell so much that blood can’t get to it
- This can lead to death of the brain, even though the other parts of the body may not be as badly damaged
Brain Death Testing:
- We test for brain death through a formal process that tests the vital functions of the brain, such as coughing and breathing
- If these tests confirm what we think is going on, then it means that the brain has died, and that means that they have died
- They have died even though their heart continues to beat and the breathing machine keeps giving air
- You are welcome to watch these tests
- Some people find it helpful to watch the testing
- Other people find it distressing
- If you want to watch, someone will be with you to support you and tell you what is going on
- The time of death is the the time that the second set of tests are done
- They will look the same after this set of testing as they are still on the breathing machine
Donation after brain death:
- If they become an organ donor, they will look like this when they go to the operating room for the donation procedure
Circulatory Death
Overview:
- Sometimes:
- The brain is damaged very badly but some parts of the brain still work a little
This does not meet the criteria for brain death, but is still not a recoverable injury. - The person may be very sick and cannot survive without the breathing machine
- The brain is damaged very badly but some parts of the brain still work a little
- At this point, we no longer think the breathing tube is helping them
- We are not sure how long they will survive without the breathing tube, but we will focus on their comfort during this time
- This usually happens within 10-20 minutes, but sometimes takes hours or days
Donation after circulatory death:
- Donation can only happen if death occurs within a specific timeframe
- This is so the possible damage to organs is minimised, which happens when they are without blood flow
- Medication will be given to relieve pain or distress
- Predicting time between withdrawal of support to death is hard
- Organ donation may not be possible
- Tissue donation may still occur
- You can withdraw consent at any time
Transplant
- When someones organs - body parts - are healthy, they can live a normal life
- When these organs get sick, then people are often very sick and it changes what they can do
For example:- Someone with sick kidneys may need to go on a machine called dialysis
- This means they have to spend several hours at hospital 3 days a week
- They are often very tired and can’t do much or work much even when they are not at hospital
- If they get a healthy kidney put in, then they don’t need dialysis anymore and can get back to a more normal life
References
- ANZICS. The Statement on Death and Organ Donation. Edition 4.1. 2021.
- Core Family Donation Conversation (FDC) Workshop. Course Notes. 2023.
- The Organ and Tissue Donation Story. DonateLife WA. 2023.
- The Brain Story. DonateLife WA. 2023.