Don't blame families for low organ donation rates, fix the system

Despite more than A$250 million of investment into organ donation programs since 2008, transplant rates have not increased as quickly as the government had hoped. A private consulting firm will now review the nation’s organ donation and transplantation program to investigate what else can be done.

One issue at play is the claim that 37% of families override their loved ones' wishes in more than one-third of cases, which is much higher than international rates.

Most families want to honour their loved one’s known donation wishes. So a one-in-three veto rate suggests families are encountering barriers to organ donation in the hospital.

Dying with dignity

The skill and knowledge required by the health care team in identifying, requesting and responding to offers of donation is vitally important to increasing organ donation rates. As the head of Spain’s world-leading organ donation organisation recently said:

We never blame the population. If people donate less, it must be something we have done wrong.

Good end-of-life care includes the discussion of organ donation in every death. It also involves processes to ensure the patient and family receive adequate treatment, support and care. Families need to understand and trust the staff involved.

But most hospital staff are themselves uncertain about organ donation and its processes, so how can they give appropriate information and support to dying patients and their families?

My research found most families want to donate and give hope to others, but importantly, they want to protect their dying loved one’s dignity and meaning. If they don’t donate, it is generally because the system hasn’t helped families when they needed it most with information and compassionate communication.

What can go wrong?

Families often travel long distances to be with their dying relatives. They mostly struggle to negotiate access to their loved one in the emergency department or intensive care unit, before reaching an understanding their loved one will die.

It is not unusual for families to offer donation, but they are generally shocked to find that organ donation is a complex clinical and legal process which involves paperwork with confronting detail about the surgery.

Arranging the donation and coordinating the teams is a complicated organisational event involving hundreds of people across the country and can take up to 36 hours to facilitate. The time period between the decision being made and the donation is lengthening in Australia.

organ donation is a complex legal process of paperwork and confronting detail.Image Point Fr/Shutterstock

The processes may be particularly hard for families who do not understand that there are two possible pathways to organ donation. One is DCD: donation following circulatory death. This requires the planned removal of all life support, without certainty that their loved one will die within the 90 minute time frame required for donation to proceed.

Others must grapple with the idea that organ donation follows brain death, which requires the patient to be declared deceased with the heart still beating. Families are often unaware that, at a planned time, the deceased is transported with a beating heart to the operating theatre for the donation surgery. This may become another barrier for families if they do not receive the skilled support to manage this information and farewell their loved one.

Despite public campaigns most families find this is all new information. They therefore find it hard to comprehend while emotionally exhausted, fatigued and often in need of basic sustenance. They focus on trying to protect their loved one and family from any perceived harm.

Misconceptions

Around 80% of the public support organ donation. So it seems unfathomable that families decline donation at death, because logic states that when you die you don’t need your organs anymore.

Like our politicians, people then assume the decision to decline organ donation is irrational and therefore either an opt-out system or legislation to allow first-person or presumed consent should be enacted. Not true.

The reality is more complex and sits in the availability of standardised processes, transparent organisations and provision of good quality patient and family centred end-of-life care. We (society, health-care organisations and health-care workers) abrogate our responsibility for this when we blame families who refuse to donate.

Options for reform

Australia needs to improve its donation rate and there is a continuing bipartisan effort to bring Australia to international best practice.

Some states in the US have recently introduced first-person authorisation. They have increased donation rates by using individual donation registration information from databases to tell families their relative wanted to donate and arranging the donation regardless of the family view.

But ethicists and researchers are already flagging problems. Health professionals and the wider community have been surprised at the psychological impact on families who fear the organ donation process might somehow harm their dying relative.

Also, people are registering to donate without knowing the organ donation process, which may lead to a loss of trust and, over time, contribute to a further reduction in organ donation.

Arranging organ donation and coordinating the teams is a complex organisational event involving hundreds of staff.Tyler Olson/Shutterstock

Another strategy that could prove effective in Australia – and return the onus of responsibility of organ donation performance back to the health care professionals charged with the task – is the use of “routine referral” legislation.

This would help increase referrals at death, which are currently dependant on the knowledge, skill and convenience of health-care staff. It would require all deaths and all imminent deaths (likely within 24 hours) to be referred for organ donation consideration.

Routine referral is the standard of care in Spain and the United States and is a large part of why they have high donation rates. It’s also needed in Australia.

Rather than changing the power dynamic between families and hospitals, we should improve our organisational practices and end-of-life care in hospitals. This requires staff to, as far as possible, prevent harm and resolve conflict.

Families and their dying or deceased loved ones also have human rights, and they include the right to a peaceful death and organ donation.

Holly Northam has previously received funding from the Organ Donation Authority for a consultancy. She is a director on the board of Donor Families Australia and also on the board of Sharelife.