Between Life and Death…

A powerful BBC documentary, “Between Life and Death”, screened this evening on BBC One. The documentary (which can be viewed online for the next week in the UK) examined the life and death decisions made for critically ill patients with severe brain injury. Neuro-intensive care provides a way to interrupt the process of dying for such patients. But it raises difficult questions for medical staff and for families about the wishes of patients, the wishes of family members, and about uncertainty. Should treatment continue at the risk of the patient surviving in a severely impaired state? Or should patients be allowed to die, with the risk that perhaps if treatment had continued they may have recovered?

There are a number of ethical questions raised by the documentary makers, and highlighted by the cases presented. One of the principle questions was about the role of patients in decisions about their treatment, versus the role of family members. A young man, Richard, suffers a motorcycle accident, and is left unconscious with a spinal cord injury. The doctors talk to Richard’s family, who indicate clearly that he would not want to be left in a severely disabled state. Given this information the doctors prepare to withdraw treatment and allow Richard to die, but then the consultant in charge of Richard’s care discovers that Richard has voluntary control over his eye movements. He can move his eyes left or right, at least intermittently in response to instructions. He appears to be in a locked in syndrome (a severe form of quadriplegia where all movement apart from the eyes has been lost) rather than a coma. Should then Richard have a say in this decision?

This question is similar to the one posed by recent evidence that appears to suggest that a very small number of patients in a vegetative state may actually be aware and able to communicate using fMRI or EEG. If such patients are aware, could they perhaps be asked whether or not they want to be kept alive?

One of the things that didn’t come across clearly in the documentary is that it is very rare for patients to be in a locked in syndrome following a head injury. Locked in syndrome usually results from a very discrete damage to areas of the brain critical for sending messages from the brain to the muscles – either stroke in the brain stem, or, as in this case, from a very high spinal injury. For many, perhaps most, patients in neurointensive care it is never going to be possible to ask them whether or not they want treatment continued. The reason for their inability to respond is because of global injury to thinking areas of the brain. But ‘Between Life and Death’ did highlight just how difficult it can be to attempt to involve locked in patients in such decisions. In the film the doctors spend months waiting for Richard to recover enough that they can be confident that he understands their questions, retains information and is able to reliably communicate responses.

Richard’s family find the doctors’ delays hard to bear. As far as we can tell they had a very good sense of what Richard would have wanted. He had previously encountered someone who was left quadriplegic after an accident and Richard had indicated that he would not want to be kept alive like this. Richard doesn’t have a living will (advance directive), but it appears clear what he would say if he could. The family are frustrated by the doctors’ insistence that they wait longer to give Richard a chance to decide. At one point in the documentary the camera lingers on Richard’s tear-filled eyes, and we may wonder whether Richard, too, is frustrated by having his treatment continued. His father, early on expresses a feeling that it would in some senses be worse if he were fully aware of his surroundings and unable to move than if he were unconscious.

But the documentary ends with a bombshell – when Richard’s doctors do manage to communicate with him he appears to clearly indicate a desire for treatment to continue. He seems to understand that he is quadriplegic and will remain so. His previous view that he would not want to live in such a state has changed. Faced with the reality, he chooses to live.

Richard’s case illustrates the central dilemma for advance directives, and of substituted judgement. What if the patient changes their mind? When we think about these problems in the abstract, over a drink at the pub, or over the dinner table talking with family we may have completely different views than if we were in that situation for real. If the patient’s choice is for withdrawal of life-saving treatment they will die without a chance – as Richard did, to reflect on the situation and choose continued treatment instead. There is a risk that, in trying to respect the patient’s autonomous choice (previously expressed) we would actually violate their autonomy and disrespect the choice that they would actually make. Some have suggested, on this basis, that we should disregard advance directives to withdraw treatment where there is a chance that the patient will recover competence.

There is something to this argument. One of the important lessons of Richard’s case is that when patients think about future decisions and tell their families what they would like to happen they should think very carefully and consider the possibility that they would subsequently think differently or change their mind. But does the possibility of a change of heart mean that we shouldn’t respect patients’ wishes? One reason why this doesn’t follow is that the same risk applies to many other patient decisions.

The change of mind argument would apply to all sorts of irreversible decisions that people make. A patient who consents to cosmetic surgery might decide subsequently that they wish they hadn’t. Someone who decides not to take malaria prophylaxis may later regret their decision when they become seriously unwell with malaria. Someone may wish afterwards that they hadn’t slept with the person they had just met. Should we prevent all of these sorts of decisions? Any decisions that we make come with the potential for later regret. All significant decisions come with the possibilities of making mistakes. But we allow people to make their own decisions if they are competent because of the importance that most of us place on making our own choices for right or wrong. 
We are only truly respecting people’s autonomy when we allow them to make mistakes. If we only go along with their choices when they correspond with the ones that we would make, or what we think is best for them – we are not really respecting them as autonomous individuals.

Not all choices are the same. Where the stakes are high (and the stakes are very high in neurointensive care) it is appropriate that we take extra care to ensure that patients understand the implications of their decisions. Where they are incompetent we should have a high standard for assessing the evidence of their apparent wishes and for their understanding of the consequences of their choice. That may mean that we cannot be guided by their wishes, and have to be led by what appears to be in their best interests. That will sometimes mean continuing treatment, and sometimes not. However, if we do have good evidence of their wishes, if, for example we have a living will that clearly indicates that the patient would not want life in this condition, and perhaps where we can get a very good idea from family and friends about what the patient would want, we should respect that choice.