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Recovery of coma patient sparks confusion over when to ask about organ donation

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e7411 (Published 02 November 2012) Cite this as: BMJ 2012;345:e7411
  1. Tony Sheldon
  1. 1Utrecht

A dramatic television documentary has sparked a national debate in Denmark, and neurosurgeons are now to review guidelines on when to broach the question of organ donation with the relatives of brain damaged patients whom they believe to be dying.

An estimated 1.7 million viewers watched the documentary Pigen der ikke ville dø (The girl who would not die) (www.dr.dk). In the programme, Benedikte Dahlerup, the senior doctor in a neurotrauma unit, told parents that medical staff believed their daughter was terminally ill, and asked for their views on organ donation.

This was, however, prior to any diagnostic tests confirming brain death, a prerequisite under Danish law for organ donation.

The parents agreed to donation, but 19 year old Carina Melchior, who was admitted to Aarhus University Hospital with severe brain injuries following a road accident, survived.

After several days of treatment she was taken off a ventilator, recovered, and awoke from her coma. One year later Carina was leading a relatively normal life, including horse riding, despite suffering from short term memory loss. Her parents filed a complaint with the National Agency for Patients’ Rights and Complaints because, reported the Danish Broadcasting Corporation website, they were “not convinced the medical staff did their utmost to save their daughter.”

The hospital’s chief medical officer Claus Thomsen accepted that the hospital made an error of judgment giving the family the impression that Carina was terminally ill, and he added there is, “a lot we can learn from the process.”

The hospital’s medical director of neurosurgery, Carsten Koch Jensen, believed that the presence of television cameras during the conversation with Carina’s parents about donation may have had a misleading effect. “Everybody got carried away. The context was so wrong. This patient was not even approaching brain death,” he said.

Following last month’s broadcast the Danish Broadcasting Corporation’s website was overwhelmed with responses. In the following week,, 943 people withdrew consent from the national register of organ donation. But among new registrations that week 1889 (67%) still gave full consent.

Helle Haubro Andersen, director of the Danish Center for Organ Donation, said coverage of the case “totally misunderstood” the situation—that the young woman was never even close to being diagnosed as brain dead and was therefore never a candidate for organ donation.

Professor of neurosurgery Jens Christian Sørensen, chair of the Danish Neurosurgical Society, said that the diagnosis for brain death is 100% certain. “That diagnostic tool was not used in the case of Carina Melchior and this case has no influence on our guidance for the diagnosis of brain death,” he said.

“This is not a question of harvesting organs,” he continued. “The issue here is the timing of the question to the family; when do you go in and ask for their opinion. We need to know what they would decide if it became clear that it was a case of brain death. That has been our practice so far.”

This month the Danish Neurosurgical Society’s brain trauma committee meets to try to ascertain so called objective criteria for broaching the question of donation. Also, the minister of health, Astrid Krag, is seeking national guidelines that indicate when doctors can ask relatives, as individual hospitals have different policies.

In Denmark about 4.4 million people aged 18 or over can register their preferences on donation. Approximately 800 000 have done so and 164 000 (6%) have refused donation. In 2011, 529 patients were on a waiting list for donation, of whom 46 died.

Notes

Cite this as: BMJ 2012;345:e7411