Who can make decisions for you?
When you're making medical decisions, you have the right to be informed, to consent, or to refuse care. Even if you can't make decisions for yourself, these rights still apply.
We explain the principles of informed consent, and comment on Advance Directives.
Remember that older people have the same human and legal rights, entitlements, and the same protection from the law as anyone else. [1]
Informed consent
The informed consent process protects your interests and safety as a health services consumer.
It involves respect for your wishes [2], sharing of expert information and advice with you [3], your authorisation to proceed with an intervention [4], and your right to make advance directives [5].
It includes the right to refuse treatment [6] and the right to withdraw consent at any time [7].
The Code of Health and Disability Services Consumers’ Rights (CHDSCR) gives rights to all health services users. > MORE - Note 1 on this page
Diminished competence
People with diminished competence should still be allowed to make informed choices and give informed consent, to the fullest extent they're able. Health providers have a duty to support them to do this. > MORE - Note 2 on this page
But what is competence?
We all make bad choices sometimes, but this doesn't necessarily mean we're incompetent. Competence is not black-and-white, and it can fluctuate with the time of day, environment, and the supports available.
Almost everyone is capable of participating in at least some decisions about their health and welfare.
The Code says every consumer must be presumed competent unless there is good reason to believe otherwise.
Who makes decisions?
Three differing situations need to be considered. This could be an older person who is:
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Mentally competent to make decisions
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Not competent but has a valid Enduring Power of Attorney (EPA) for personal care and welfare
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Not competent to make decisions and without a valid EPA.
Mentally competent
You have the right to make an Informed Choice and give Informed Consent. Informed consent must be in writing if it involves research, experimental procedures, general anaesthetic, or significant risk.
You should be given the information you need to make a decision, and be able to choose who will provide services, within reason. These, and other rights, are set out in the Code.
Mentally incompetent – with EPA
Your EPA for personal care and welfare cannot be enacted unless you're deemed not competent. It can't be enacted simply because you might make decisions which don't seem reasonable to other people [8].
Your Attorney must promote and protect your welfare and best interests, while seeking at all times to encourage you to exercise your own capacity [9].
Mentally incompetent – no EPA
The Code says that a person who is mentally incompetent should be encouraged to participate in decision making to the extent that they are able.
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They should be present when decisions are being made that affect their health and wellbeing
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The environment should be such that their contribution to the decision making process is maximised.
Their wishes must be taken into account (substitutive judgement) so that what they would have wanted is what actually happens.
When it's impossible to know what the person would have wanted, a clinical decision, based on best interests of the older person, is made for them. The family's wishes can be considered in relation to best interests, but they cannot make decisions unless they have an EPA for Personal care and Welfare.
If an older person has no EPA and is no longer competent to appoint one, then the Family Court can appoint a welfare guardian.
Advance Directives / Do Not Resuscitate (DNR)
Advance Directives can be effective if you have a predictable illness with a predictable progression so that you can make an informed choice about decisions for the future. For example, you can ask not to have 'heroic' measures taken when you reach a specified stage or event in the progress of an illness.
But Advance Directives, particularly DNRs, are less effective when the future is unknown, i.e. most times. Informed Consent principles can't be used when you are consenting to, or refusing, an unknown treatment.
For example, should your DNR apply if you're hit by a bus and could make a full recovery? What if you have a heart attack and need CPR? What if your heart stops beating during surgery but you could have immediate resuscitation?
Power imbalance
People working with older people have a lot of power and control over what happens. Their position of power may inhibit the expression of opinion and free choice. Age Concern is regularly told of situations where older people are too scared to speak up.
If people working with older people think of themselves as enablers and advocates of older people, rather than rescuers, this may help balance this.
While many people who have cognitive impairment have reduced ability to act on their personal choices, this doesn't mean they can't make choices. It is the duty of every healthcare provider to enable them.
Comment
You are entitled to the same respect as others when it comes to making choices and decisions. If you can't make decisions for yourself, people making these decisions should give priority to what you would have wanted to happen.
You have rights as a health services consumer; your doctors have a Duty of Care; and your attorney has a responsibility to look out for your best interests.
We call for the building of a culture of respect for older people, based on these principles.
Resources
> VIEW The Code of Health and Disability Services Consumers’ Rights (CHDSCR)
> VIEW The Human Rights Act 1993
> VIEW The PPPR Act 1988 and amendments (Enduring Power of Attorney)
Notes
Note 1: The Code of Health and Disability Services Consumers’ Rights (CHDSCR) Right 7 – Right to make an Informed Consent and Give Informed Consent:
(3) Where a consumer has diminished competence, that consumer retains the right to make informed choices and give informed consent, to the extent appropriate to his or her level of competence…
Note 2: The Code of Health and Disability Services Consumers’ Rights (CHDSCR)
1. Consumers have Rights and Providers have Duties:
1) Every consumer has the rights in this Code.
2) Every provider is subject to the duties in this Code.
3) Every provider must take action to -
a) Inform consumers of their rights; and
b) Enable consumers to exercise their rights…
References
1 Human Rights Act 1993 S21 (1) … prohibited grounds of discrimination are (i) Age
2 CHDSCR Right 5 Right to Effective Communication (2) Every consumer has the right to an environment that enables both consumer and provider to communicate openly, honestly, and effectively.
3 CHDSCR Right 6 Right to be fully informed (1) Every consumer has the right to the information that a reasonable consumer, in that consumer’s circumstances, would expect to receive …
4 CHDSCR Right 7 Right to Make an Informed Choice and Give Informed Consent – (1) Services may be provided to a consumer only if that consumer makes an informed choice and gives informed consent …
5 CHDSCR Right 7 Right to Make an Informed choice and Give Informed Consent – (5) Every consumer may use an advance directive in accordance with the common law.
6 New Zealand Bill of Rights Act 1990: 11. Right to refuse to undergo medical treatment – Everyone has the right to refuse to undergo any medical treatment.
7 CHDSCR Right 7 Right to Make an Informed Choice and Give Informed Consent – (7) Every consumer has the right to refuse services and to withdraw consent to services.
8 PPPR Act 1988 6 (3) The fact that the person in respect of whom the application is made for the exercise of the Court’s jurisdiction has made or is intending to make any decision that a person exercising ordinary prudence would not have made or would not make given the same circumstances is not in itself sufficient ground for the exercise of the jurisdiction by the Court.
9 PPPR Amendment Act 2007 98A Exercise of enduring power of attorney in relation to personal care and welfare
(2) The paramount consideration of the attorney is the promotion and protection of the welfare and best interests of the donor, while seeking at all times to encourage the donor to develop and exercise his or her capacity to –
(a) understand the nature and foresee the consequences of decisions relating to his or her personal care and welfare; and
(b) communicate such decisions.
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