INsite discusses things to be aware of when it comes to advance care planning in New Zealand.
If we could write our own scripts, most people would like to see themselves living a long, full, and happy life that ends peacefully, at home, with loved ones all around. For some, this is how life and death will pan out. Others may find themselves in need of more long-term care and support as their health deteriorates; others may be confronted with an unexpected illness or injury that changes everything. Either way, it is best to think about long-term care before it is needed and to make the necessary health, legal, and financial decisions before it is too late.
What is Advance Care Planning?
Advanced Care Planning (ACP) is based around an anticipated deterioration in the health of an individual. It focuses on an individual’s preferences for medical treatment and end-of-life care in anticipation that they may lose capacity to make decisions.
The profile of Advance Care Planning in New Zealand has been significantly raised in the past seven years. Following the Inaugural International Advance Care Planning Conference in Melbourne in April 2010, the group of New Zealand delegates set up the National Advance Care Planning Cooperative.
The cooperative set up a website (www.advancecareplanning.co.nz) with information and resources for individuals, their families and the health workforce, with a focus on training.
One of these resources, the Ministry of Health’s document Advance Care Planning: A guide for the New Zealand health care workforce, states that ACP discussions should be ongoing and encourage conversations about what is important for a person with regards to their hopes and fears about their future health and death and dying. By engaging others – family and caregivers, for example – the ACP process can help them to better understand the person’s wishes and help with decision making when the person is no longer able to communicate this themselves.
It can be difficult to know when to have discussions around ACP. The MOH document says all people who have an advanced life-limiting illness or condition should be given the opportunity to discuss their prognosis and end-of-life issues. If a health professional acknowledges that they would not be surprised if the patient were to die in the next 12 months, it is time to engage with family members and start these conversations. However, ACP can start at any time.
Some people will prompt the ACP discussion themselves, others will rely on healthcare professionals. Some will welcome the opportunity for such discussions, others will not wish to participate. In any case, ACP discussions should be handled with sensitivity but also with knowledge of the legal framework so that any formal documentation can be completed if required.
The legal side of ACP is significant. The MOH document states that “plans made separately from discussions with health care professionals are likely to be less informed and might be more difficult to honour, especially if they are contested”. Although ACP discussions, advance care plans and advance directives may be completed orally, there are advantages to having written documents.
The actual plan can be documented on forms specifically designed for that purpose or written within the patient’s records, with the patient provided with the opportunity to confirm its accuracy. It should be able to be shared with those health professionals who may need to access it, whilst also respecting patient privacy.
Enduring Power of Attorney
If a person wishes someone else to make decisions on their behalf should they lose capacity then appointing that person as an enduring power of attorney is certainly worth considering, although it is a costly exercise, given the formal legal processes involved.
There are two types of EPA: one for property and one for personal care and welfare. The same person can be attorney for both. An attorney must be at least 20 years old, not bankrupt, legally capable and not subject to a personal or property order.
There are limitations to the EPA. A person with an EPA cannot refuse consent to the administration of any standard medical treatment intended to save a person’s life or prevent serious damage to their health. If the treatment is not standard, it may be possible for a person with an EPA to legally refuse consent. This limitation means that an advance directive is the best way for an individual to refuse a particular future treatment.
There is a wealth of information on EPAs on the Super Seniors site.
An EPA is actually a type of advance directive in itself. The Code of Health and Disability Consumers’ Rights describes advance directives as “a written or oral directive by which a consumer makes a choice about a possible future health care procedure, and that is intended to be effective only when he or she is not competent”.
Therefore if a patient has made a negative advance directive specifying that they do not wish to receive certain treatment in certain circumstances, and those circumstances have arisen, then that treatment should not be provided, irrespective of what health care providers consider to be in the patient’s best interest.
Positive advance directives, where a patient specifies a preference for a particular treatment, do not carry the same weight as there is no right to receive a particular treatment where the treatment is not offered or available. However such preferences will certainly be taken into account and can be useful in cases of clinical uncertainty.
The key point, according to the New Zealand Medical Association (NZMA), is that patients cannot demand or refuse anything in advance that they cannot demand or refuse when conscious and competent. So they cannot refuse in advance compulsory treatment provided under the mental health legislation; nor can they demand euthanasia or assisted dying.
For an advance directive to be legally valid, the individual needs to be competent at the time of decision-making, free from undue influence, and relate the directive to the present circumstances. It also needs to be made clear that there is a directive in existence and that it is valid. An advance directive can and should be incorporated into ACP documentation, as should documentation around the appointment of an EPA.
The lines appear to be a little blurred between the legality of advanced care planning and advance directives. The MOH document states that in New Zealand it is “likely but as yet legally untested that a written advance care plan would constitute an advance directive for legal purposes” and suggests seeking legal advice if there is any uncertainty.
Many are advocates for advance directives simply because they like the fact that family and healthcare professionals will have a better understanding of their choices at the time treatment is required. Directives can also help to lift the burden of decision from relatives when faced with difficult decisions. They can also serve to cut expensive health costs for family members.
However, The Life Resources Charitable Trust makes the point that these arguments, however valid, have no bearing on the wellbeing of the patient or accuracy of compliance with the patient’s health preferences.
Advance directives, or ‘living wills’ as they are often called, are often criticised for being unable to accurately anticipate circumstances at the time of treatment.
The NZMA points out the possibility that patients’ views and treatment options can significantly change in the time between when the directive is made and the treatment is required.
“Over time, patients’ views can also change about what constitutes a tolerable existence. Advance directives cannot encompass unforeseen possibilities and options. Therefore, while upholding patients’ rights to decide in advance, the NZMA also emphasises that patients need to think carefully about the risks associated with committing themselves in advance.”
There are many case studies to illustrate the difficulties associated with advance directives. In her article Palliative Care and Advance Directives, Joanne Doran, Area Medical Director of Palliative Care at St Vincent’s Hospital, in NSW, Australia, gives her account of dealing with a confused patient who, despite having an advance directive to the contrary, was adamant he wanted to receive treatment for his pneumonia. “The situation was stressful for everyone involved. His next of kin was very traumatised by the whole experience.”
Ethical and clinical challenges
The New Zealand Medical Council makes clear in its guideline for the use of advance directives in accordance with the New Zealand Bill of Rights (1990) that a doctor cannot ignore an advance directive unless there are reasonable grounds to so.
However, there are many difficult issues for healthcare professionals to confront, around interpretation, validity, the obligation to provide palliative treatment in the case of refusal of all other treatment, whether food and fluids count as medical treatment, and whether “palliative/terminal sedation” is a right in situations of extreme pain or other distress.
In its position statement on advance directives the NZMA states that doctors should be under no obligation to follow an advance directive to which they hold a conscientious objection or which they see as unethical or not consistent with good medical practice, and in these events they should explain to the healthcare team and family why they are not willing to follow the advance directive and if possible remove themselves from the treatment team.
Such clinical challenges can arise through vague or ambiguous language used in advance directives.
As this example, taken from a “Living Wills” pamphlet by Mary C. Senander, Human Life Alliance of Minnesota, Inc. shows, many questions can arise from the use of catch-all terms.
“If I should have an incurable or irreversible condition [does this include asthma, diabetes, cerebral palsy, heart conditions, or AIDS that may worsen considerably in the future – or even be cured?] that will cause my death within a relatively short time [this could be hours or weeks or even months] and if I am no longer able to make decisions [what if the person is affected by medication or allergies? What if he is temporarily disoriented or depressed? Stoned? Or senile?] regarding any medical treatment, I direct my attending physician [family doctor? Friend? Attorney-in-fact? What about a doctor in a strange city who knows nothing about you?] to withhold or withdraw treatment [what about respirators or chemotherapy? How about insulin, nitroglycerin, blood pressure medicine, oxygen, antibiotics, even food and water?] that only prolongs the dying process and is not necessary to my comfort or to alleviate pain [if you are transitorily comatose or drugged, what degree of pain is being specified here?].”
Overcoming barriers to ACP
Aside from objections to advance directives, there are other barriers which prevent ACP from taking place. Quality ACP requires time to prepare and hold the discussions, and due to many demands placed on health care professionals, such time is not always readily available. This is compounded by the fact that end-of-life discussions are not always easy to initiate and may be uncomfortable to hold. International studies have shown that the quality of end-of-life and ACP discussions between patients and their health care providers are predominantly poor.
However, the enhanced focus on ACP in New Zealand suggests we are getting better at holding these important conversations and thinking ahead to the future with all its possibilities.