The organ donation debate is long overdue

At 1 am on a Sunday morning in November 2006, my world changed forever. My husband, a 37 year old lecturer at Oxford University, who had been diagnosed with cystic fibrosis at the age of 3, sat up in bed and had a sudden, massive haemoptysis. The events that followed were a blur of blue lights, alarms, and fear. After bagging and BIPAP (bilevel positive airways pressure) failed to reduce his hypercapnia, he was intubated and ventilated. Six hours earlier we had been having dinner with friends.

There followed a nightmare, made survivable only by the support of family, friends, and the wonderful intensive care and cystic fibrosis specialist teams. The odds were poor. I was told that fibrotic lungs respond poorly to ventilation and that it was proving very difficult to ventilate him. A trial extubation failed, a Hayek oscillator was brought in to try and clear the secretions, his carbon dioxide remained raised, and everyone kept asking whether he was on the lung transplant list, which he was not.

There was some doubt about whether having a tracheostomy would affect his chances of being accepted on to a transplant list. A call to the transplant team confirmed that this was not the case and so on day 10 he had a tracheostomy, and by day 14 he had been weaned off the ventilator on to BIPAP. On 23 December 2006, against the odds, he was discharged home for Christmas. We were told he would rebleed again. The question was when. The hope was to get a lung transplant before that happened.

My husband was given an appointment for a consultation with the transplant team in May 2007. It seemed to us a long, long time to wait, but I understand that the shortage of donor organs means the team has to be selective in who goes on the list, finding a fine balance between the patient being ill enough to take the risk of transplantation and well enough to survive the procedure. The rehabilitation from having been in intensive care was hard enough. Living with the threat of a rebleed was terrifying. He continued to have “small” (150 ml) bleeds every few weeks despite embolisation. We employed a live-in nurse, to be available should he have a haemoptysis. I returned to work and, the day before his transplant assessment, got my first consultant post.

After a day of investigations at the transplant centre, we met with the consultant, who described my husband’s case as a “no brainer”: he needed a lung transplant. He had turned his health around after the period in intensive care, and despite needing 24 hour oxygen, had returned to work, making a joke at the start of his lectures about going scuba diving. But we knew he would rebleed again and that his chances of surviving another massive haemoptysis were slim. His case was fast tracked, and within a week of that consultation he was on the waiting list for a bilateral lung transplant.

Living on the transplant list is a bit like being in suspended animation. There is a need to live every day to the full, but also the sense of the hope of a new, different life hovering somewhere in the future. After a while you stop jumping every time the pager goes off or the phone rings. We followed stories of others who had had successful transplants and sadly of those who died before their call came. There is a guilt that comes from wishing for something that means someone else’s demise. There is also a frustration at the statistics: it seems senseless that so many organs go undonated.

I would like to say that this story has a happy ending; that my husband was one of the lives saved every year by someone’s gift of life. I would like to say that we have moved into the house we were in the process of buying, that he is taking a well earned sabbatical and will be returning to teaching next term. But I can’t. After a series of major bleeds and two further periods in intensive care, he joined the hundreds of people each year who die awaiting organs. Despite the heroic efforts of the intensive care and transplant coordination team, there just weren’t enough donor organs available to secure his survival.

When a loved one dies, so many things go through your mind. One thought has stayed with me. In the hours after my husband’s death, I asked myself whether I would, if it had been possible, said yes to donating his organs. The honest answer is that I do not know if I would have been able to make that decision. I was confused, exhausted, and bereft, and in no state to make a decision about anything. Now, the answer to that question seems like a “no brainer,” but at the time I was dazed.

That is why I think that the organ donation debate is long overdue. Whether to consent is not a decision that can be made easily in those moments of intense shock and grief, and my respect and admiration goes out to the families who have done so. No one likes to talk about death or to imagine their own ending or that of a loved one. The opt-out proposal will not mean that those who do not wish to donate their organs will have to do so, or that families will not have a choice. What it will mean is that everyone will be prompted to think about that choice, to make a decision and discuss it with their loved ones, rather than avoiding the matter and thinking, as is all too easy, “there but for the grace of God . . .”

The opt-out proposal will not mean that people who do not wish to donate their organs will have to do so, or that families will not have a choice. What it will mean is that everyone will be prompted to think about that choice

The author is an NHS doctor.

This Personal View was first published in the BMJ (2008;336:278; doi: 10.1136/bmj.39470.623229.59).

   

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