Blogs posted for BMJ

Organ donation is an emotive topic, and rightly so

Recently, 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.

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Blogs posted for BMJ, Public health issues in Asia

Why are we so resistant to calling sugar the enemy?

Sparing developing countries the fate of obesity-associated diseases that plague the developed world is currently one of the most pressing global public health issues. Before we export wholesale the ‘follow the food pyramid, exercise, and eat no more calories than you burn’ approach, it may be time to review how effective it actually is. The answer is: not very, if a recent study by the Institute for Health Metrics and Evaluation at the University of Washington, showing that the obesity rate continues to climb even as Americans are exercising more, is anything to go by.

I recently came across the work of Peter Attia (like a lot of interesting people, I came across him via his TED talk) on obesity, diabetes and insulin resistance. He is currently exploring a novel hypothesis: that obesity is not a cause of diabetes; rather, it’s a symptom of a much deeper underlying problem. Turning conventional wisdom about diabetes on its head, Attia asserts that adding fat cells could be the lesser of two metabolic evils for a body being bombarded with excess insulin and faced with a choice between using it or storing it.

Attia is now in a team of researchers looking at the causes of obesity from multiple angles, but his, that refined carbs, the culprit of insulin resistance are the problem, is one that makes a lot of sense. Attia is the co-founder of the Nutrition Science Initiative, a non-profit research organization in San Diego. The other co-founder is Dr Gary Taubes, who recently wrote extensively and eloquently in an essay for the BMJ on how little real science is behind the energy imbalance theory of obesity and on the endocrine hypotheses that have been lost in the mists of time.

Obesity is not the only health issue that stands to benefit from a better understanding of the causes and effects of insulin resistance. As a public health researcher and writer, I study the factors that make it difficult for so many women in high-income countries to successfully initiate and sustain exclusive breastfeeding. There are many factors at play, from hospital practices to the attitudes and behaviours that travel along women’s own social networks, and not least the pervasive onslaught of propaganda from the formula industry. But recently published research into the role of insulin in milk production points to sub-optimal glucose metabolism impairing breastfeeding. The research adds to the body of knowledge and clinical trials now underway to test whether diabetes medications can be used to regulate insulin action in the mammary gland. However, the ideal approach is a preventive one, says Dr Laurie Nommsen-Rivers, a scientist at the Cincinnati Children’s Hospital Medical Centre and corresponding author of the study. “Modifications in diet and exercise are more powerful than any drug.”

It’s heartening to see Taubes’ work in the BMJ and Attia garnering the massive publicity that a TED talk can bring. Probably the most famous critic of sugar is Robert Lustig and his work on the health impact of fructose, and there are voices within the medical community trying to get the dangers of sugar on the public health agenda, such as Laura Schmidt and Clare Brindis (see the opinion piece from Schmidt on CNN.com and Nature for the underlying academic paper). Still, it is fat, and saturated fat in particular, that is touted as the main dietary public enemy, and the all-pervasive presence of sugar and refined carbs does not attract similar criticism.

There are pharmaceutical interventions for diabetes and obesity, all with their own side-effects and none offering a cure. Yet there are simple, side-effect free dietary changes that can tackle the underlying issue of insulin resistance. They aren’t lucrative for anybody, except perhaps whole food retailers. Neither the pharmaceutical industry nor the agri-industrial complex will be promoting these changes any time soon. But the public health community can, and arguably should.

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

24 July 2013

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