Jane Parry: Organ donation is an emotive topic, and rightly so

jane_parry3Recently, there was a very moving piece in The Guardian about a doctor’s experience of a family donating their dead child’s organs for transplant. It got me thinking about organ transplantation here in Asia, specifically in Singapore, and why donation rates there are so low.

Singapore has an opt-out organ donation policy: a 2009 amendment to the Human Organ Transplant Act (HOTA) allows for “the kidneys, liver, heart, and corneas to be recovered in the event of death from any cause for the purpose of transplantation, applicable to all Singapore Citizens and Permanent Residents 21 years old and above, who don’t have mental disorders, and who have not opted out.” Opting out of HOTA means that you are lower priority on the waiting list for an organ transplant.

It sounds rational and fair on the surface: if you want to benefit from a public good, you should be ready to equally contribute to that public good. It is actually deeply flawed. Assuming that the state is a benevolent organism under the democratic control of the people it is designed to serve, then perhaps it can be trusted make these kind of life or death decisions on behalf of its citizens. But the state is not like this in most countries in Asia, Singapore included. Singapore retains the death penalty: the legal power to end the life of its citizens. Opt-out or go to the back of the queue organ donation is another example of the state holding too much power over how citizens live and die.

The opt-out/back of the queue policy looks purely logically and dispassionately at organ donation, but this is in no way a dispassionate decision for either an individual or their loved ones to make. It’s also a matter of how far the state should be allowed to reach into the personal decisions of individual citizens. That some people cannot countenance the idea of organ donation, but at the moment of need in a life-and-death situation gratefully receive one, is not surprising and should not be legislated against.

It also doesn’t even increase donation rates that much. Before HOTA was introduced in 1987, there were approximately three cadaveric kidneys available for transplant every year. Post-HOTA, the average rose to 13. In 2015, there were 17 cadaveric kidneys available for transplant (vs. 34 the year before). Better than nothing, perhaps, but given this is an opt-out system, the results are parlous compared to those in the top five countries for organ donation—Croatia, Spain, France, Austria, and Norway, where donation rates are 50 kidneys per million population. The annual per population rate equivalent for Singapore should yield 250 cadaveric kidneys available for transplant. The disparity is similar for cadaveric livers.

The system isn’t yielding stellar results because neither the public nor the doctors are on board with it. According to transplant surgeons cited in a 2015 Straits Times piece by the paper’s senior health correspondent Salma Khalik: “one common factor in countries with a low retrieval rate is the lack of buy-in by other doctors, particularly those working in the intensive care unit.

“To be usable, a liver has to be taken from the body before the heart stops beating. This means doctors must verify brain death in a patient and alert the transplant team. Instead, doctors often just tell the family there is no hope and, with their permission, pull the plug on the life support system and allow the heart to stop.

“By doing so, perhaps without realising it, they have also pulled the plug on a patient with imminent liver failure, and perhaps another patient facing heart failure. Both might have been saved if the doctor had done the right thing by ascertaining brain death and allowing the organs to be retrieved.”

Families in Singapore are resistant too and frequently do not give consent, despite the fact that the relative concerned had not opted out of HOTA. This may stem from religious objections to organ donation, or because they don’t trust that the doctors are not simply pressuring them to make a decision for the good of the many at the expense of their relative. Earlier consultation with the family and better explanation could help overcome this distrust.

Someone who has had such a transformative experience as organ donation is highly likely to become a strong and convincing advocate for opting into an organ donation scheme, especially among their family, friends, and social circle. This kind of highly personal advocacy can be part of a range of measures aimed at educating the public, rather than pushing them to defy their religious and subjective feelings about organ donation.

Countries like Singapore looking to improve donation rates would do well to study Croatia’s model, internationally recognized as highly successful. Although it too is a system based on presumed consent, those who opt out are not penalized, and the family’s decision is always respected. A review of Croatia’s organ donation system identified a range of factors that contribute to the transplant programme’s success, including “the appointment of hospital and national transplant coordinators, implementation of a new financial model with donor hospital reimbursement, public awareness campaign, international cooperation, adoption of new legislation, and implementation of a donor quality assurance program.” The public’s positive attitude to organ donation, its solidarity, and people’s willingness to help others is also key. This kind of social solidarity cannot be created by legislation alone.

But improving organ donation rates has to start with the doctors. It means that trauma surgeons dealing with traffic accident victims, for example, have an established line of communication with the transplant surgeons who could save their patients’ lives through the loss of the trauma doctor’s patient. It means that doctors have to engage with patients long before families are faced with a heartbreaking decision to be made with no time to spare. At that moment, families need to be treated sensitively by trained, in-house transplant coordinators. With the general public, education about organ donation can be done in the waiting room of family physicians or during routine medical examinations, including a clear explanation of how brain death is determined. It can happen in schools by sharing real-life stories of lives saved through organ donation.

The anonymous doctor who described his feelings so movingly writes: “I can never forget the generosity demonstrated by a family experiencing unimaginable pain and their solidarity; their story is an example to us all and I am sure there are several families who are forever grateful for their benevolence… I cannot forget my colleagues and the support they gave to the family, myself and each other. The night demonstrated how each person is one small part of a team without which no ward or hospital would function.” Such heartfelt and personal advocacy could never come about from a system that pushes its citizens to remain in an opt-out system, or else. Organ donation is a highly emotive topic and deserves a response that takes human emotion into account.

Jane Parry is a Hong Kong based public health and medical journalist and researcher.

I declare that I have read and understood the BMJ Group policy on declaration of interests and I have no relevant interests to declare.