The distinction between withdrawing life sustaining treatment under the influence of paralysing agents and euthanasia

Although it is lawful to withdraw life sustaining treatment in a child provided it is within that child's best interests, the timing of discontinuation of paralysing agents with the withdrawal of ventilatory support raises ethical issues. Here several commentators consider the ethical, legal, clinical, and personal implications of a fictitious case study.

Are we treading a fine line?

[The purpose of medicine is] to do away with the sufferings of the sick, to lessen the violence of disease and to refuse to treat those who are overmastered by their disease

Hippocrates1

The ability to treat disease and sustain life by artificial means is continually advancing. At the same time there is a need to acknowledge when limits have been reached in a patient and continued treatment is no longer in his or her best interests.

In September 1997 the Royal College of Paediatrics and Child Health concluded a two year period of consultation with professional and patients' interest groups with the publication of the document Withholding or Withdrawing Life Saving Treatment in Children: a Framework for Practice.2

One of the many issues discussed in this document are the pharmacological agents often used in life sustaining situations and the distinction from euthanasia. The document states that while “it is unlawful to give a medicine with the primary intent of hastening death … giving a medicine to relieve suffering which may, as a side effect, hasten death is lawful and can be appropriate.” Paralysing agents are often used in ventilated patients. Withdrawal of ventilatory support while the paralysing agents are effective inevitably leads to death. Although the royal college does not support euthanasia, the guidelines state that “when the decision is made to withdraw treatment, it is not necessary to withdraw the paralysing agent before respiratory support is withdrawn.”

But are we treading a fine line here? We invite a debate on the ethics of such a situation, using a fictitious case based on our clinical experience.

Paralysing agents may be given up to but not at or beyond the point of extubation

Paralysing agents might be used at the time of withdrawal of life sustaining treatment in two clinical scenarios: in a child who had not previously received paralysing agents and, as in the case here, in a child who had required paralysing agents to facilitate treatment such as high pressure ventilation before the decision was made to withdraw life sustaining treatment.

The use of paralysing agents in a child who had not previously received such agents is euthanasia, defined by the Royal College of Paediatrics and Child Health as “causing death by intended lethal action, but for the relief of suffering.” Such action is also in the best interests of the doctors and parents rather than the patient because paralysing drugs are given primarily to prevent terminal gasping, which is distressing for them to see. Euthanasia, or the administration of any medicine with the primary intention of hastening death, is unlawful.

If, however, the drug was originally given to facilitate part of that treatment, such as high pressure ventilation, before a decision was made to withdraw life sustaining treatment, when should it be discontinued? As paralysing agents are no longer required to facilitate ventilation once the child is extubated, to continue to give them constitutes an intended lethal action or euthanasia. However, failure to reverse paralysing agents pharmacologically or to wait for them to wear off completely before extubation does not involve such a step and thus does not fall within a definition of euthanasia.

Whatever the linguistic niceties, many doctors feel uncomfortable with the suggestion that paralysing agents need not be reversed or allowed to wear off when life sustaining treatment is withdrawn. This is because of the injunction to do no harm, “primum non nocere.” 1 2 However, it is important to recognise that there is a balance between the harm done by the paralysing agent and the harm done by keeping a child lingering on a ventilator. To do the least possible harm in this situation may well be to allow the child to die while the paralysing agents are still active.

Although the English courts have accepted that it is lawful to withdraw life sustaining treatment as long as withdrawal is in the child's best interests,3 the use of paralysing agents in this situation has not been addressed. The courts have commented, however, that “there is no question of the court approving a course aimed at terminating life or accelerating death … the court is only concerned with the circumstances in which steps should not be taken to prolong life”3 and, in another instance, “what is at issue in these cases is not a right to impose death, but a right to choose a course of action which will fail to avert death.”3 We conclude that it is not lawful to continue to give paralysing drugs once a child has been extubated, as they will no longer be required for ventilation and the drug's only action is to accelerate death.

The solution from an ethical and a legal point of view is that paralysing agents may be given to facilitate ventilation up to but not including or beyond the point of withdrawal of life sustaining treatment. Indeed, this is the solution adopted by most British paediatric intensivists, only 12% of whom continue with paralysing agents during extubation.4

In contrast, guidelines from the ethics advisory committee of the Royal College of Paediatrics and Child Health says “when the decision is made to withdraw treatment, it is not necessary to withdraw the paralysing agent before … respiratory support is withdrawn.”5 In so far as this suggests that it is permissible to give paralysing agents when they are no longer necessary for treatment, the guidelines are on the wrong side of the “fine line” alluded to by Street and Henderson, both ethically and legally. We suggest they should be reconsidered accordingly.

The practice advocated by Street and Henderson does seem to be on the ethical and lawful side of the “fine line.” As “ventilation was withdrawn without awaiting clearance of muscle relaxants,” it seems that paralysing agents were discontinued but not reversed or allowed to wear off before extubation. They must be commended for their sympathetic and understanding approach to a difficult case.

The parents' perspective on withdrawing treatment

An enormous learning curve awaits parents coming into a paediatric intensive care unit. Our role, apart from providing an emotional perspective, is unclear. Before we can reach a decision on withdrawal of treatment we need a common plateau of understanding—we need educating in how clinicians reach recommendations, and we want staff to acknowledge the value of our child.

For these reasons it is essential that the staff repeat information, explaining diagnostic tests and time frames, the purpose and effectiveness of surgery, the seriousness of the situation, the course the disease is taking, and why treatment helps or does not. We need to be prepared for this eventuality, we do not necessarily need reassurance.

We need to tell the doctors and nurses about our daughter's qualities and what she means to us—the reality of the loved child is a different reality to the child they see—to increase her value in their eyes and preserve her image in ours.

Our consent to the amputation of fingers and feet would be necessary, but heroic. Reaching the point where ventilation is withdrawn is a road that cannot be mapped by the lay person—the scans that dictate the severity of our child's illness mean nothing to us, but we need explanations if we are to believe that even limited recovery is impossible.

The ending of her life is acceptable to the staff, it seems—they must make the offer. Are they giving up on her? Do they think she is unacceptable to us with such a damaged body? Do they fear how we will react to the prolongation of dying? Do they need the cot for some other child? Is there a pressure on resources evident to us? These are not questions we can ask, but they need to be answered because we have nothing to bargain with, other than our valuation of our child's life for her own sake.

We want the comfort of “died peacefully in [our] arms.” Could we watch her fight for breath without experiencing our full culpability in her death? By coming off the ventilator still paralysed and sedated she can be placed in our arms for the last minutes of life, allowing that comfort bereaved parents find in the intimate involvement with their dying child.

We need to know how we will be involved after the death—the availability of a bereavement room, the right to touch and dress her, where her body will rest. This will give a continuum to our parental role. Fear of postmortem examination may make us want to prolong the period before her body is taken from us.

Later, with the guilt that comes with grief, we may believe we deprived her of her last chance to fight for life. It will help to have a firm authoritative statement, from hospital or coroner, that the death was inevitable and that the parts played by us and all concerned were blameless.

The doctrine of double effect is difficult but not impossible to apply

In western medicine there is some acceptance that withdrawing life sustaining treatment can be in a patient's best interests.1 It is further accepted that, in the absence of advanced refusals, it is ethical to withdraw such treatment from those who are unable to decide for themselves only when the treatment can no longer achieve its intended clinical purpose and so cannot provide any benefit. Judgments of futility are often difficult to make prospectively and, when disputes cannot be resolved, the courts are typically brought in to decide the matter. The parents of the 2 year old patient did not contest the medical judgment that treatment was futile nor was the patient in a persistent vegetative state, so the courts would not have automatically been involved.

Decisions to withdraw life sustaining treatment often appeal to the doctrine of double effect for moral and legal justification. Simply, the intention behind withdrawing such treatment cannot be to end the patient's life but must be to avoid imposing treatment that is not in the patient's best interests, even though the patient's death may indirectly result from it.2 When death follows the withdrawal of ventilatory support, however, you could argue that death must be the intended result and not merely a side effect of acting in the patient's best interests. This is because paralysing drugs suppress a patient's breathing for some time after an infusion has been stopped. Because the patient completely depends on the ventilator she dies quickly when it is withdrawn. The BMA suggests that withdrawing respiratory support in these circumstances could be interpreted in law as an intended killing.3

The doctrine of double effect is difficult to apply in this case, not impossible. To avoid confusion it is necessary to deal with each decision in turn. The first decision—to use muscle relaxants—itself has dual effects, the intended one being to make ventilation possible, and the side effect being to make the patient completely dependent on it. The second decision—to withdraw ventilation—has the effect that the patient dies quickly, but this doesn't have to be the intended effect. The two decisions are morally independent, despite being chronologically and logically sequential, because the intention behind the first decision (to make ventilation possible) is not linked to the side effect of the second, the patient dies. This could be an accurate description of the doctor's intentions in the face of difficult circumstances. It could also provide a legal defence against the charge of murder, although I know of no case law testing this interpretation.

The alternative would be either to continue respiratory support indefinitely or to stop the paralysing drugs first and wait for any effects to wear off completely before withdrawing ventilation. The first is arguably not in the patient's best interests. The other may prolong the patient's suffering and that of her parents because of the delay between deciding to withdraw life prolonging treatment and actually doing it. The only reason why muscle relaxants were used in the first place was to allow ventilatory support, so the intention behind withdrawing it can only be to allow the subsequent withdrawal of ventilation, thereby linking the intention of the first decision with the effect of the second. The patient may become distressed and, without the effect of the muscle relaxants, the ventilator may not work properly anyway. It is difficult to see how withdrawing muscle relaxants can be in a patient's best interests without taking him or her off the ventilator at the same time.

In any case there are drugs, such as atracurium, that do not have these problematic residual effects, making this particular moral difficulty disappear.