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a quadriplegic his preference may well be different. decision maker), or some combination of both. Advance
Ethical justification of the best interests principle there- directives can therefore inform health professionals how
fore requires a relevant and current understanding of decisions are to be made, in addition to who is to make
what quality of life means to the particular patient of them. New Zealand and most states of Australia have an
concern. 49 Act that allows for the appointment of a person to hold
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enduring power of attorney. It is found in the literature
Patient Advocacy that most individuals do not want to write advanced
directives and are hesitant to document their end of life
Terms such as ‘medical agent’, ‘medical power of attorney’
and ‘enduring guardian’ are relatively common in rela- care desires. Advance directives were created in response
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tion to patient advocacy. A medical agent is someone to increasing medical technology.
chosen by an individual (e.g. a partner, child, good friend An advance health care directive, also known as a living
who must be over 18 years) to make medical decisions will, personal directive, advance directive or advance deci-
on behalf of that person in the situation where the indi- sion, are instructions given by individuals specifying what
vidual becomes incompetent (i.e. when an individual actions should be taken for their health in the event that
lacks decisional capacity). Although it is possible to have they are no longer able to make decisions due to illness
a number of medical agents, only one may act for an or incapacity, and appoints a person to make such deci-
individual at one time. The medical agent should be sions on their behalf. A living will is one form of advance
someone not involved in a professional capacity in the directive, leaving instructions for treatment. Another
delivery of the related health care. For those who are not form authorises a specific type of power of attorney or
competent and require someone to be appointed to make health care proxy, where someone is appointed by the
healthcare decisions on their behalf, there are various individual to make decisions on their behalf when they
agencies such as ‘Guardianship Boards’ or ‘Office of the are incapacitated. People may also have a combination
Public Advocate’ – depending again on the specific juris- of both. One example of a combination document is the
diction – that will appoint such a person. Five Wishes advance directive in the US, created by the
non-profit organisation Aging with Dignity. Although
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Enduring guardians can potentially make a wider range
of decisions than a medical agent, but an enduring guard- not legal documents, ‘good palliative care plans’ are used
ian can make decisions only once a person is considered in some jurisdictions as a record of a discussion between
to be unable to make his/her own decisions. Acts such as the patient, family members and a doctor about palliative
the Consent to Medical Treatment and Palliative Care Act care or active treatment. These are useful records to
1995 (SA) exist to facilitate choice in healthcare treatment provide clarity when treatment options require full and
that individuals may wish to have or refuse when they frank discussion and consideration, particularly regard-
are unable to make their wishes known because of an ing complex, critically ill patients (see Palliative care
illness. 11 below).
Substituted Judgement Principle Medical Futility
A substituted judgement is where an ‘appropriate surro- The concept of futility may be used by critical care doctors
gate attempts to determine what the patient would have and nurses as a rationale for why treatment, including
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wanted in his/her present circumstances’. The person life-saving or sustaining treatment, is not considered to
making the decision should therefore attempt to utilise be in the patient’s best interests. At times, the concept of
the values and preferences of the patient, implying that futility may be used inappropriately, and therefore uneth-
the proxy decision maker would need an in-depth knowl- ically, for example if used to coerce relatives into agreeing
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edge of the patient’s values to do so. Making a substituted to cease the patient’s treatment.
judgement is relatively informal, in the sense that the Futility is a concept that has widespread use in healthcare
patient usually has not formally appointed the proxy ethics guidelines for the cessation of treatment, particu-
decision maker. Rather, the role of proxy tends to be larly with reference to ‘do-not-resuscitate’ orders and the
assumed on the basis of an existing relationship between withdrawal of lifesaving or sustaining treatment. Treat-
proxy and patient. Difficulties related to this principle ment is considered futile if it merely preserves permanent
include that making an accurate substituted judgement is unconsciousness or cannot end dependence on intensive
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very difficult, and that the proxy might not be the most health care. Futility is used to cover both cases of pre-
appropriate person to have taken on the role. 51 dicted impossibility of the success of treatment (‘physio-
logical’ futility) and cases in which there are competing
Advance Directives interpretations of probabilities and value judgements,
such as a balance of probable benefits and burdens. 6
For individuals wanting to document their preferences
regarding future healthcare decisions with the onset of Physiological futility is also commonly defined as ‘useless
incompetence, there are ‘anticipatory direction’ and treatment’; when clinicians conclude (through personal
‘advance directive’ forms available. Advance directives can experience, experience shared with colleagues, or consid-
be signed only by a competent person (before the onset eration of reported empirical data) that in the past 100
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of incompetence), and can be either instructional (e.g. a cases a healthcare treatment has had no desired effect.
living will) or proxy (the appointment of a person(s) This particular definition is purported to defend against
with enduring power of attorney to act as surrogate doctors being pressured into pursuing extreme and