Between Life And Death: Why medicine is art as much as science

Tagged with:

About 18 months ago, I was approached by the BBC asking whether we would be interested in making a programme about critical illness, death, and dying.

I work as a consultant in the Neurosciences Critical Care Unit (NCCU) at Addenbrooke's Hospital in Cambridge. Our unit is one of the largest in Europe, and takes care of patients with severe head injury, brain bleeds and stroke.

We were interested, but also a bit wary.

The successes of modern medicine are often rightly publicised, but we rarely discuss what happens when medicine fails.

For example, death is commonly viewed as an event which involves cessation of the heartbeat. In actual fact, it is irreversible damage to the brain that decides whether a person survives or not, and the heart needs to have stopped for several minutes before such damage results.

Indeed, it is common, as with head injury, for the brain to be irreversibly damaged, while the function of the heart and lungs is maintained by intensive care.

People have little concept of the varying degree of brain injury that result in brain death, coma, a vegetative state, or severe disability.

A discussion of such difficult topics is important in a civilised society, and helpful to families of patients. I felt that the knowledge from a well-made programme could inform such a discussion.

However, there were also significant pitfalls in making such a programme. There were difficult issues about filming unconscious patients who could not provide consent, and we were concerned that a poorly made programme would display patients as exhibits.

Also, as you might imagine, there were sensitivities about being recognised as an expert on dying! It was clear that there was an opportunity to make a very good programme, but also the danger of making a very bad one.

We thought long and hard about the issue of consent, and finally took the same approach as we would for research in this setting.

We felt that if there was a wider good, the patient was not put at risk, and this was likely to have been what they would have wished, it was appropriate to include them in the programme.

In order to understand whether or not patients would have wished to be part of the programme, we sought advice from those that knew them best - their close families.

We also agreed that patients and their families would have the right to withdraw consent to participate in the program up to the point of transmission.

Nick Holt (director of the film), and Marina Parker (producer) spent several months in the NCCU and Emergency Department (ED) at Addenbrooke's even before they even started to film.

In the succeeding months they essentially became part of the NCCU team, and shot nearly 90 hours of film! Their interviews took them right across the spectrum of clinical activity in the NHS, including the ED, intensive care units and operating theatres; the wards and rehabilitation centres; and even the mortuary and anatomy dissection rooms!

In the event, the programme's editors chose to focus on three patients who had been through the NCCU. Their stories make unconventional television viewing.

Richard was one of those people. He was admitted with an isolated spinal injury, but then fell into a coma, from which he showed no signs of emerging.

The consequence was that we had a man in his forties who was unable to respond to us and who, his family informed us, had previously expressed the conviction that he would not want to survive in that state.

Given that this was the best information we had of his wishes, we were willing to be guided by this, but decided to wait a bit longer to clarify the situation.

When, after a period of waiting, he showed voluntary movement of his eyes, everything changed. We could use these eye movements to document "yes" or "no" responses, and through such communication, allow Richard to have a say in his own care.

This was crucial, because we know that there may sometimes be differences between what a patient declares when he is fit and healthy, and what he feels when he is the one in the hospital bed.

As time passed, we were confident that Richard had enough comprehension and memory to make these interactions meaningful. We were then able to establish, on three successive occasions, that he understood what had happened to him, and that he was happy for us to carry on with his treatment.

The presence of such communication also enabled both the ICU staff and Nick to directly ask Richard whether he was happy to continue to participate in the making of the programme, and we be certain of the fact that he was in agreement with this.

Since completion of the programme, Richard has continued to improve very slowly.

However, we need to ensure, through continuing communication, that he remains happy with treatment. Given the length of any potential recovery process, it is also essential that we maximise his enjoyment of life, particularly in terms of interactions with his family and friends.

Arguably, none of the three cases that are featured might be considered a success.

However, I hope that viewers will take away a sense of the uncertainties that medical teams sometimes face, and why good clinical care remains just as important in these difficult settings.

I also hope that the programme shows why medicine remains as much an art as a science, why good clinical care requires wisdom as well as knowledge, and that common humanity does not need to be a casualty of "high tech" intensive care.

Many of the staff on the unit were initially wary about the filming because of the fears expressed earlier in this discussion. Despite these fears, we chose to go ahead, because a well made programme could illuminate a very difficult topic, and inform the public about this grey area between life and death.

In the event, any fears were completely unjustified. Nick and Marina were absolutely fantastic, and have become good friends not just to us, but also to the patients' families.

Their feedback has been uniformly positive. Indeed, after they viewed the programme, the feeling that came across was that it gave them a voice that they would otherwise not have.

My only regret is that, because of the need to keep the program to a manageable length, we could not tell all of the stories that we recorded.

Still, there is always a next time...

Professor David Menon is a consultant at Addenbrooke's Hospital, Cambridge.

Between Life And Death is on BBC One at 10.35pm on Tuesday, 13 July and on BBC HD at 00.00 on Wednesday, 14 July.

Tagged with:


More Posts