If I lose capacity, will my advance directive be honoured?

Abstract

In New Zealand any mentally competent person aged 18 years and over can complete an advance directive [AD] to receive or refuse health treatment at a future time when they no longer have capacity. This paper identifies what current legislation informs an AD, and how and where an AD is used, with an emphasis on people over 65. For Māori, as tangata whenua, te Tiriti o Waitangi obligations, relationships, Māori values and self-determination (tino rangatiratanga) are relevant in this discussion where it involves older Māori kaumātua and kuia. While legislation establishes the legal authority for an AD, a second pathway has emerged within the health sector with the development of Advance Care Planning [ACP] for health consumers, usually with terminal health conditions. An AD is activated by a determination that a person no longer has the requisite capacity. The outcome has major consequences for the person deemed not to have capacity; they are then unable to exercise their right of self-determination with decisions made for them by others, usually on a best interest basis. The principle underpinning the AD is individual autonomy; this means that if an AD is valid and applicable it must be followed. This principle is supported by domestic law, and international law and conventions. While the principle of autonomy may not represent the cultural practice or beliefs of everyone in their end-of-life care, research in New Zealand and internationally indicates a strong desire in the older age group to retain some sense of self and self-determination in end-of-life choices. Notwithstanding this, in practice the number of ADs remains low. Indications are that in the health care sector there is a structured system for ACP that includes ADs which operate under the Health and Disability Commissioner (Code of Health and Disability Services Consumers’ Rights) Regulations 1996 [HDC Code]. An AD, whether made under the legal or health systems, operates in accordance with the common law. To ensure an AD will be honoured, certainty and confidence is required within an effective statutory framework where both legal and health can navigate, with a clear definition of capacity and guidance as to form, which will protect a person’s rights, and preserve autonomy, dignity and a future vision of dying well.