Watch your words! The challenges of law around the end of life

by Dominic Wilkinson

Here in South Australia last week, a bill has been proposed to clarify the legal status of advance directives. One very small part of that bill involves a modification to an older palliative care act. The modification corrects an ambiguity in wording in the earlier act. The ambiguity is subtle. However, that choice of words has had major consequences for seriously ill children and adults in South Australia and for health practitioners. It is a salutary reminder of how hard it is to enact good laws in the area of end of life, and how easily such laws can make things worse rather than better.

The Consent to Medical Treatment and Palliative Care act was passed in 1995. I wasn’t around at the time, but from talking to those who were, and from reading the act it appears that it was designed to support health practitioners and families making difficult decisions around the end of life. The act clarified who could make decisions. It also set out to protect dying patients from having burdensome and futile treatments, and to protect health practitioners who consulted with family members and stopped treatment that would merely prolong the dying process. This is the key section of the act relating to end of life treatment (section 17 (2)):

“A medical practitioner responsible for the treatment or care of a patient in the terminal phase of a terminal illness… is, in the absence of an express direction by the patient or the patient’s representative to the contrary, under no duty to use…life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state.”

Sounds OK doesn’t it? If the patient is dying and they (or their family on their behalf) do not want life-support treatment that offers no potential benefit, then that treatment should be stopped.

But the phrase “in the absence of an express direction … to the contrary… no duty” appears to imply that if the patient or family did object, that health practitioners do have a duty to provide treatment. For example, if a child had advanced incurable cancer, this reading of the act implies that their parents could expressly object to any limitation of treatment, and require medical practitioners to provide intensive life support such as mechanical ventilation, dialysis, or chemotherapy for as long as they wished despite no prospect of benefit, and real risk of harm.

Of course the clause is not very clear. It contains a double negative (actually, there is a triple negative). It does not state that patients have a right to demand treatment. Professor Loane Skene from the University of Melbourne argued as much in a paper written in 2005, where she noted that “Recognising such a right would be inconsistent with the rest of the Act and contrary to long accepted principles of medical ethics and the common law.” Nevertheless to avoid misunderstanding, she recommended urgent revision of the act.

However, the above unfortunate interpretation has come to be placed on the 1995 act, and until now there has been no revision. It has come to mean that in South Australian hospitals, if parents insist on life-sustaining treatment doctors will provide it, even if they feel strongly that the treatment is futile. I am aware of several instances over the last year where my colleagues have felt compelled to continue to provide treatment to infants or children even though they believed that such treatment was harmful and not consistent with good medical practice. Those children ultimately died from their illness, but had days or weeks or sometimes months of extra invasive treatment.

These issues are sensitive. In intensive care we work extremely hard to communicate with families, to understand their views, hopes, beliefs and values, and to work our way together towards the best course of action for their child. Conflicts between medical staff and families are uncommon, and in many cases can be resolved with good communication, empathic understanding, and with time. However, sadly some differences are not able to be resolved. There is then a need to decide whether it is reasonable to provide treatment that parents, for whatever reason, feel should be provided to their child, but which the medical team all believe does not serve the child’s best interests, and indeed may be harmful to the child.

The approach in the UK, provides one approach to the problem. The General Medical Council in their 2010 guidance document ‘Treatment and care towards the end of life’ have indicated that

“If a legal proxy or other person involved in the decision making asks for a treatment to be provided which the doctor considers would not be clinically appropriate and of overall benefit to the patient, the doctor should explain the basis for this view and explore the reasons for the request. If after discussion the doctor still considers that the treatment would not be clinically appropriate and of overall benefit, they are not obliged to provide it. However, as well as explaining the reasons for their decision, the doctor should explain to the person asking for the treatment the options available to them. These include the option of seeking a second opinion, applying to the appropriate statutory body for a review (Scotland), and applying to the appropriate court for an independent ruling.” Section 16(i)

The Royal College of Paediatrics and Child Health in the UK, in a guideline in 2004 reflecting on case law and the relevant acts noted that

“There is no obligation to give treatment which is futile and burdensome – indeed this could be regarded as an assault on the child.” Withholding or Withdrawing life-sustaining treatment in children 2004, p16

Neither of these documents are legal documents. In fact, there is no statutory law relating to medical futility in the UK. However, existing case law supports the above approach.

The proposed new clause to the South Australian Act reads:

“A medical practitioner responsible for the treatment or care of a patient in the terminal phase of a terminal illness…is under no duty to use, or to continue to use, life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patient’s representative has requested that such measures be used or continued)”

The modified clause makes it clear that neither patients nor family members can demand treatment at the end of life. As I have previously argued, ‘futile’ treatment may be harmful to the patient, or may be harmful to other patients by denying them access to treatment. There are strong ethical reasons to place limits on treatment that can be requested on behalf of a dying patient. I am unsure whether this act and this clause are the best way to legislate in this area. Nevertheless, they seem a necessary step in the right direction.