Improving law at the end of life: a legacy of Schiavo’s case?

The way Terri Schiavo died was a tragedy. Regardless of whether you believe she should have been allowed to die or whether her life was wrongly taken, the legal battle preceding her death was tragic. It was tragic that Terri suffered this damage to her brain, tragic to see her family locked in a bitter dispute that lasted well over a decade and tragic to see her life (and death) become a public spectacle televised throughout the world and used by lobby groups and politicians to promote their own agendas.

However, despite all the negatives of the Schiavo case, it has started people talking about an issue that generally very few consider until it is too late. The publicity surrounding Terri’s plight has prompted many people to make sure their wishes are known to loved ones, should they find themselves unable to make their own decisions. Some people have gone further and formally documented their wishes in “advance health directives” or “living wills”.

In addition to these individual decisions people have made about how they would like to be treated, the Schiavo case has also prompted people to think more generally about these problems and consider how these decisions should be regulated by the law. When should it be lawful not to give life-sustaining medical treatment to an adult who lacks the ability to make decisions for him or herself?

The two most important issues raised by this question are: Who should be making these decisions? What criteria should be guiding that decision maker?

In terms of who should make the decision, different legal systems have approached this issue differently. Generally, an adult is able to make this decision him or herself by making his or her wishes clearly known through the completion of an advance health directive or similar document. A decision to refuse treatment that is contained in such a directive or document made while the adult has the ability to make this decision will generally continue to bind health professionals even if later that ability is lost.

Sometimes legislation places limitations on the extent to which these documents can operate to refuse life-sustaining medical treatment. In Queensland, an advance health directive cannot operate to refuse this sort of treatment until the adult is seriously ill, for example, suffering from a terminal illness with less than a year to live.

If an adult has not completed a legally binding directive, it generally falls to another person to make the decision, on behalf of the adult, regarding the provision of life-sustaining medical treatment or not. Some legal systems empower doctors to make this decision, arguing their training and expertise means they are well placed to make such an assessment. Others appoint a family member or close friend on the grounds of that person knowing the adult best and therefore having the most reliable understanding of what the adult would have wanted. Generally, there are also obligations for the different potential decision makers to consult each other in that decision making process.

The second important issue noted above relates to what criteria should be used when making a decision whether to provide life-sustaining medical treatment. Again, different legal systems approach this issue differently. One approach is to apply “substituted judgment”. That test involves ascertaining what the adult would have wanted and then making that decision accordingly. Another approach is to be guided by what treatment is in the adult’s “best interests”. Again, this involves assessing what the adult would have wanted, but also regarding a range of other factors, such as good medical practice. It has been suggested by some that the best interests test is one primarily driven by medical considerations such as whether not providing the treatment is medically indicated.

The authors are currently undertaking a research project reviewing the law in this area as it operates in Queensland, called Rethinking Life-Sustaining Measures. Although Queensland’s legislation is progressive by national standards, we raise in an Issues Paper a range of problems or issues in that legislation which warrant further consideration. One of them relates to the important issues just discussed: Who should make the decision and on what criteria.

Under Queensland legislation, if an adult has not executed an advance health directive, the decision maker is generally going to be a member of the adult’s family. The criteria to be applied in making this decision are set out in the legislation and are called “general principles” and the “health care principle”. These principles require consideration of matters such as what the adult would have wanted, his or her best interests and the need to respect his or her dignity. If the family member is satisfied that these criteria mean life-sustaining medical treatment should not be provided, then he or she can consent to that treatment not being given.

The issue we raise for discussion in the Issues Paper is that the legislation then gives the adult’s treating doctor the ability to veto that consent given by the family member. Only if the treating doctor is of the view that providing the treatment would be inconsistent with good medical practice can the consent given by the family member operate. Although it is possible for the doctor’s view to be challenged, it would require an appearance before a court or tribunal. Accordingly, this right of veto represents a significant limit on the role of the family member in this decision making process.

The question raised in the Issues Paper for discussion is whether this is appropriate. Should an adult’s treating doctor be able to veto a decision made by a family member to withhold or withdraw life-sustaining measures under the legislation?