Understanding the Use of Advance Directives in New Zealand
With the specialties of gerontology and palliative care working more closely together, Te Omanga and some other local aged care providers (including the Home of Compassion, Silverstream) organised this seminar to increase awareness of the palliative care needs of patients with end stage dementia.
Many people worry about losing control of decisions about their health care at the end of their life. A particular concern is the use of invasive technology, when the prospect of having a fair quality of life (even if the technology overcomes the immediate problem) is low and the long-term prognosis is poor. Patients can decide to have their own "living will" or "advance directive" to clarify their care preferences in such situations, or can appoint someone to be their "enduring power of attorney".
What is a living will?
It is typically a document in which a person, while still competent, directs the withdrawal or withholding of life sustaining medical procedures in the event that he or she is determined to be in a terminal condition and is no longer able to make decisions about medical treatment. So it is a "living" document in the sense that it is "alive" when the individual cannot speak for himself - and in that sense it is like a will. The term seems to have originated in the United States in the 1970s. But these days it is more common to speak of an "advance directive", which covers a wider range of situations.
What is an advance directive?
It is a written or oral directive by which a consumer makes a choice about a possible future health care procedure, and which is intended to be effective only when he or she is not competent. The New Zealand Code of Consumers' Rights recognises that consumers have the legal right "to use an advance directive in accordance with the common law" (right 7(5) of Code). Actually, the New Zealand definition is very broad, because: (1) it doesn't have to be a formal written document; and (2) it doesn't have to apply only when the consumer is terminally ill; and (3) it doesn't have to relate to life sustaining measures. So, for example, an advance refusal of Electro Convulsive Therapy is a form of advance directive. So too, technically, is a consent form for the use of general anaesthesia during surgery.
Can I require certain care to be given?
No, a patient cannot require the provision of a particular treatment. But a patient can refuse a particular treatment (for example, a Jehovah's Witness patient may specify "no blood transfusions"). This right - the right to refuse medical treatment - is so fundamental that it is recognised in the New Zealand Bill of Rights Act 1990 (s 11). And a patient may express a preference about which of two viable treatment options is to be preferred.
So what is an enduring power of attorney? Or a welfare guardian?
It is a legal document by which a "donor" appoints someone to be his or her "attorney" in relation to personal care and welfare — in effect, his or her legally authorised decision maker — to make decisions about health care at a future time when the donor is mentally incapable of making such decisions (either because he or she lacks the capacity to understand the nature & consequences of such decisions, or is unable to communicate their decisions). The Court may also appoint a "welfare guardian" in such circumstances. If I appoint my own attorney, the appointment is "enduring" because the power "endures" (indeed, it comes into operation) when the consumer becomes incompetent. But there are significant limits on an enduring power of attorney and a welfare guardian in New Zealand law — the attorney or welfare guardian cannot be authorized to refuse consent to the administering of any standard medical treatment intended to save the consumer's life or to prevent serious damage to his or her health (or to consent to brain surgery or Electro Convulsive Therapy). So, in the very circumstances when you might want a proxy decision maker to say "No", they have no legal power to act!
What about "not-for-resuscitation" or "do not resuscitate" orders?
These are much more common in practice than living wills or enduring powers of attorney. A doctor is able to place a note in a patient's records that based on an overall assessment of the patient's best interests, the patient is Not For Resuscitation. Usually what is intended is that cardio-pulmonary resuscitation not be administered in the event that the patient has a cardiac arrest while in hospital. Despite what the public sees on "ER", even if Cardio Pulmonary Resuscitation [CPR] is administered, a very small percentage of patients survive to the point of being discharged, and many suffer long-term complications and disability. So if the patient has a major underlying illness, administering CPR may be pointless and even harmful. Yet in most New Zealand hospitals, if nothing is documented in the patient's records, CPR is commonly given under the misconception that the law requires it.
Should "do not resuscitate" orders be discussed with patients and their families?
Ideally, a patient's general practitioner or main specialist will have discussed their future prognosis (especially if the patient has a terminal illness) and the likely course of their disease, and given the individual patient an opportunity to explain what kind of care they want at the end of their life. If that has not happened, it can be very difficult to raise these issues with patient & families in hospital. It is very important that patients and their families understand that just because a particular treatment will not be provided (given its invasive nature and low likelihood of success, and the fact that it will not alter the underlying disease), there is still a commitment to provide care — especially comfort care or palliative care.
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Ron Paterson is the Health and Disability Commissioner based in Auckland