Asking the question: making the first move in Voluntary Assisted DyingFeb 20, 2023
On the 28th November 2023 the Voluntary Assisted Dying Act 2022 (NSW) (the NSW VAD Act) will come into force.
NSW Health, has a massive program of work to develop a coherent transition to the new system. As the last State to introduce legislation (absent the Territories) information is already available through published papers in Victoria and advice for both health care professionals and the public in other jurisdictions. Whilst there are legislative similarities, there are important differences in each jurisdiction’s legislation that both professionals and public need to know. The Ministry is running a series of tailored webinars and seminars for different groups.
The NSW VAD Act sets out principles as follows:
(a) every human life has equal value,
(b) a person’s autonomy, including autonomy in relation to end of life choices, should be respected,
(c) a person has the right to be supported in making informed decisions about the person’s medical treatment and should be given, in a way the person understands, information about medical treatment options, including comfort and palliative care and treatment,
(d) a person approaching the end of life should be provided with high quality care and treatment, including palliative care and treatment, to minimise the person’s suffering and maximise the person’s quality of life,
(e) a therapeutic relationship between a person and the person’s health practitioner should, wherever possible, be supported and maintained,
(f) a person should be encouraged to openly discuss death and dying, and the person’s preferences and values regarding the person’s care, treatment and end of life should be encouraged and promoted,
(g) a person should be supported in conversations with the person’s health practitioners, family, carers and community about care and treatment preferences,
(h) a person is entitled to genuine choices about the person’s care, treatment and end of life, irrespective of where the person lives in New South Wales and having regard to the person’s culture and language,
(i) a person who is a regional resident is entitled to the same level of access to voluntary assisted dying and high quality care and treatment, including palliative care and treatment, as a person who lives in a metropolitan region,
(j) there is a need to protect persons who may be subject to pressure or duress,
(k) all persons, including health practitioners, have the right to be shown respect for their culture, religion, beliefs, values and personal characteristics (S.4(1)).
These principles would be considered best practice for any person requiring end of life care (EOLC). But their significance is that the provision of VAD is here situated within the same clinical and ethical environment as the provision of any other health service, and thus attempts to normalise what, for many clinicians, will be a major shift in EOLC discussions.
We speculate that both health professionals and the public will fall into one of three groups:- perhaps 10-20% that are strongly in favour of VAD (as is Mary Chiarella), a further 10-20% that are strongly opposed, and a large group in the middle who may or may not be opposed, but who have not given it a great deal of serious thought, simply because it was prohibited and therefore such contemplation was unnecessary (Arthur Chesterfield Evans fits into this group). This paper is written with that larger group in mind and as a brief introduction to a some practicalities of the NSW VAD Act.
You are a general practitioner (GP) working in your surgery and one of your long-standing patients Amy James comes in to discuss her recent diagnosis of Stage 4 bowel cancer. She has metastases to her liver and has learnt she is likely to die within the next six months. She is frightened and upset about her diagnosis but feels reassured because she believes that she meets the criteria to request VAD. She asks you to advise her about accessing VAD.
This paper will address four questions in relation to this scenario. These relate to: how the request is made; whether the GP is able to have a discussion with the patient about VAD; whether the patient is likely to be eligible for VAD; and what the GP is able to do after the request is made.
Firstly, this request seems to fit within the requirement for a patient-initiated conversation, known as a “first request”, about VAD, which states that a person can make request to a medical practitioner for access to voluntary assisted dying. That request must be clear and unambiguous, made during a medical consultation, and if practicable, made in person. (Other provisions are in place if not practicable under S.176(1)(a) Notice the word ‘must’. “Must” in a statute makes that requirement compulsory, whereas the word “may” renders an action within a statute permissible but optional). The person may make the request either verbally, or in another way, eg by use of gestures. They may also make the request with the assistance of an interpreter (S.19).
Had Amy James not requested VAD, would the GP have been able to raise the matter, given this requirement for a direct request? Health care professionals are prohibited from initiating a discussion with the person that is about voluntary assisted dying or suggesting voluntary assisted dying to the person (S.10(1)).
Such a prohibition would not apply to the above scenario, as it was patient-initiated. However, a medical practitioner (or a health care worker other than a medical practitioner) may initiate a discussion or make a suggestion for VAD, but only as one option amongst a number of other key options for end-of-life care (Ss 10(2),10(3)). These options include:
- the treatment options available to the person that would be considered standard care for the disease, illness or medical condition with which the person has been diagnosed,
- the likely outcomes of the treatment options available to the person,
- the palliative care and treatment options available to the person,
- the likely outcomes of the palliative care and treatment options.
The options required in this section should be standard practice for any health practitioner in any discussion about end-of-life care, regardless of any request for VAD.
Next, would Amy James be eligible to ask for VAD? Firstly, the person must be an adult and must either be an Australian citizen, an Australian permanent resident or must have been resident in Australia for at least 3 continuous years at the time of making a first request. They must also have been resident in NSW for a period of at least 12 months at that time (S.16).
Secondly, there are specific criteria in relation to the disease, illness or medical condition (condition). There must be a diagnosis of at least one condition that is advanced, progressive and will cause death. This expectation that the condition is (on the balance of probabilities) likely to cause death varies according to the disease. For a condition that is neurodegenerative, it needs to be likely to cause death within 12 months. However, for others, they must be deemed likely to cause death within 6 months. All must be causing suffering to the person that cannot be relieved in a way the person considers tolerable.
Thirdly, the person must have decision-making capacity in relation to VAD, must be acting voluntarily and not acting because of pressure or duress, and their request for access to voluntary assisted dying must be enduring. The decision-making capacity is critical. “If a person permanently loses decision-making capacity in relation to voluntary assisted dying at any time during the request and assessment process the person ceases to be eligible for access to voluntary assisted dying” (italics added) (S.16(3)).
A person is not eligible for access to voluntary assisted dying merely (italics added) because the person has— (a) a disability, or (b) dementia, or (c) a mental health impairment within the meaning of the Mental Health and Cognitive Impairment Forensic Provisions Act 2020 (NSW) (S.16(2)). Thus, they must have 1. capacity right up until the moment of VAD occurring and a 2. disease, illness or medical condition that is going to cause death within (at most) the next twelve months.
So what then ought our GP to do next? If they feel unable to support Ms James in her request, due to a conscientious objection to voluntary assisted dying (italics added) (S.9(1)). They have the right to refuse to participate in any part of the process. So, our GP now has to decide to either accept or refuse the request (S.21). The ability to refuse, due to unwillingness, seems to be a bit wider than just conscientious objection though, as they may also decide to refuse the request because they are otherwise ineligible or unwilling (italics added) to perform the duties of a coordinating practitioner (S.21(2)(a)). However, if they decide to refuse the first request because they have a conscientious objection to VAD, they must, immediately after the first request is made (italics added), inform the patient they have decided to refuse the request.
The only reasons for which the medical practitioner may decide to refuse the first request are that either they have a conscientious objection to VAD or they are otherwise ineligible (Section 21(5) Also in order to be a coordinating practitioner they will have to undergo an education program) or unwilling to perform the duties of a coordinating practitioner at that time. Unless the practitioner is refusing the request on grounds of conscientious objection, they must, within 2 business days after the first request is made (italics added), inform the patient that they have decided to accept or refuse the request, and then give the patient some approved information about VAD.
The GP must then document their course of action and within 5 business days complete the approved first request form and give a copy of that form to the VAD Review Board. If they accept and are eligible they can become the coordinating practitioner for the patient.
This may all seem somewhat daunting, but the statute is detailed and lengthy and there will be much education and support for practitioners before and after implementation. It is envisaged that, in common with the jurisdictions that have already implemented their legislation, there will be significant initial demand. However, an article in The Conversation makes the point that…euthanasia is by no means a leading cause of death in countries where it is legal. For example, Statistics Belgium said that for the year 2012, cardiovascular disease was the most common cause of death (28.8%), and cancer was the second most common cause of death (26%).
In addition, the VAD Review Board of Victoria, in its first report, recorded that, of the 413 medications dispensed for administration, 282 doses were self-administered and 49 administered by a practitioner. This indicates that 82 doses were not used, which is about 19.6% of doses administered.
A French study, examining patients in palliative care who made requests for VAD, concluded that:
A request for euthanasia appears to be a wilful means to remove oneself from the impasse of an existence paralysed by suffering. It creates a space for discussion, which promotes negotiation with patients on care practices and therapeutics, and strengthens patients’ sense of autonomy… It is important to encourage health care professionals to adopt a readiness to listen by interacting with patients in a way that is not momentarily action-oriented but rather focused on proactive discussion.
For health practitioners of all professions in New South Wales, such requests are highly likely to become more frequent with legality and care needs to be exercised in relation to how we respond.