Refusal of medical treatment - Clarification of Rights and Responsibilities
by Suzie Linden
The extent of a patient's right to refuse medical treatment has been a vexed question for many years. Similarly, the extent of a health professional's obligation to provide medical treatment to patients under their care has been the subject of numerous complex scenarios confronting health professionals and healthcare organisations. Whilst the issues are relatively clear in the context of a competent patient, as a result of increasing legal recognition being afforded to ethical principles of individual autonomy, this has not been the case where a patient no longer has the capacity to exercise their autonomous rights.A medical practitioner and one other person must be satisfied that the patient's agent or guardian have been fully informed of and understands the patient's current condition;
Some jurisdictions, like Victoria, have attempted to address and clarify these complex issues. Under the Medical Treatment Act 1998 (Vic) (MTA), mechanisms exist to give legal recognition to an advanced exercise of autonomous choice, by enabling an individual to execute a Refusal of Treatment Certificate whilst they still have the capacity to do so. Any such refusal of treatment certificate is, however, limited to a current/existing condition of the individual, and does not extend to future clinical conditions.
In this respect, the Victorian legislation goes further and recognises the capacity of an individual to exercise some control over future conditions, by enabling them to appoint a person whom they trust, as their agent or guardian, to exercise such a choice on their behalf, at some future point in time when the individual themselves no longer has the capacity to express that choice.
However, with rapid increases in medical technology, the extent of such mechanisms for advance decision-making has been questioned, indicating that the legislative regime may not be sufficiently clear to identify the full extent of individual rights and health professional obligations. This has become a particularly difficult issue in the clinical setting in those cases involving artificial food and hydration, in particular, naso-gastric feeding and PEG tubes, (percutaneous endoscopic gastrostomy).
Limitations of existing legislative regime
As noted above, the MTA provisions relate to the refusal of "medical treatment". Provision is made for a patient's agent or guardian to refuse medical treatment on behalf of the patient by executing a refusal of medical treatment certificate. Certain protections are built into the legislative scheme:
The medical treatment would cause unreasonable distress to the patient OR there are reasonable grounds for believing that the patient, if competent and after giving serious consideration to their condition, would decide that the medical treatment is unwarranted.
Section 3 defines "medical treatment" so as to exclude 'palliative care'; 'palliative care' being defined as including:
(a) The provision of reasonable medical procedures for the relief of pain, suffering and discomfort; or
(b) The reasonable provision of food and water.
In the clinical setting, difficult issues arise in those cases where artificial feeding has been introduced, (usually initially to prevent serious harm or death), and is subsequently followed by a request by next of kin to have it removed. The definition in the MTA does not specifically indicate what is considered to be 'reasonable' provision of food and water, and in particular, whether the artificial provision of food and water via feeding tubes is 'unreasonable' and as such not within the definition of 'palliative care', but rather within the scope of 'medical treatment' that may lawfully be refused.
Health professionals and health organisations, whilst sensitive to the difficult ethical issues involved, generally argue that, without legal clarification, the provision of tube-feeding constitutes palliative care, and not medical treatment as defined in the MTA and, as such, is not within the power of a patient and/or their agent or guardian to refuse. In handling such issues to date, hospitals have indicated their concern about the lack of clarity in the legislative definitions, and advised next of kin of their option to seek a judicial opinion from the Victorian Civil and Administrative Tribunal (the Tribunal) under the Guardianship and Administration Act 1986 (Vic)(G&A Act). This option was taken up by next of kin in a recent Victorian case, providing much needed guidance for all involved.
The Victorian case – the facts
The patient was diagnosed with a rare and progressive dementia (Pick's Disease) in 1990, and for the last three years has been a resident in a nursing home, unable to communicate and make decisions regarding her medical treatment. A PEG had been inserted, with her husband's consent, some 5-7 years earlier, albeit at a time when the patient could not herself indicate her wishes. Initially the PEG was inserted to enable her to receive nutrition and hydration, but also some medication. However, by the time she was admitted to the nursing home, she was not expected to survive for more than a few months.
Her husband, (the applicant), with the general agreement of their children, requested that artificial feeding and hydration be removed, and brought an application before VCAT to be appointed as his wife's legal guardian so as to refuse the tube feeding, and enable his wife to die in accordance with what were said to have been her wishes. Evidence was given to the effect that the applicant and his wife had made a mutual promise some years ago to the effect that they would not allow each other to continue in circumstances like the present.
Independent medical evidence by a consultant physician confirmed that the patient had been unable to communicate, move or take any food or liquid by mouth for some time, even though there was some difference of opinion as to whether her condition could be described as 'persistent vegetative state'. She had no cognitive capacity nor was there any prospect for improvement or recovery.
Separate submissions were made by Right to Life Australia, referring to 'the broad public interest question' involved in such cases and the 'long established ethical and legal position that no-one's life is to be judged not worth living'.
The Tribunal referred to medical opinion and other judicial decisions both in Australia and overseas, and in particular the decision of the House of Lords in the case of Anthony Bland. Although not unanimous, the Tribunal noted that medical opinion generally was of the view that artificial nutrition and hydration constitutes medical treatment, which, in the words of the House of Lords, 'may lawfully be withheld from an insensate patient with no hope of recovery when it is known that if that is done the patient will shortly thereafter die'. It was however also noted that the situation in the Bland case did not involve any comparable legislative provisions like those found in Victoria pursuant to the MTA and the G&A Act.
The Tribunal considered in some detail the relevant legislative provision, including those relating to the appointment of a guardian, under the G&A Act as well as those relating to refusal of medical treatment under the MTA. In determining the meaning of medical treatment and palliative care, for the purpose of deciding the scope of any refusal of medical treatment under the MTA, the Tribunal gave consideration to both the preamble and express purposes of the MTA, as well as the various Parliamentary debates and other reports and inquiries leading up to the passage of the MTA back in 1988. Such consideration supported the view that the philosophy underlying the MTA was that artificial nutrition and hydration was within the ambit of 'medical treatment' which could lawfully be refused. This was also supported by the decision of the House of Lords in the case of Anthony Bland as well as decisions and reports in other jurisdictions, including New Zealand.
Accepting that artificial nutrition and hydration is 'medical treatment', the Tribunal then had to decide whether it constituted 'palliative care' as defined in the MTA. Taking account of the circumstances of the particular case, the Tribunal noted:
A PEG required surgery as well as various measures to maintain it, together with ongoing supervision of the substances provided through it;
Whilst the PEG was initially inserted at a time when it provided some assistance to the patient in terms of assisting her to remain mobile, it has not served that purpose for some time and as such is no longer for 'the purpose of relieving pain, suffering and discomfort (or to serve any curative or similar purpose)';
Whilst expressing some doubt as to whether in fact it could properly be regarded as 'food' (although this was not the submission of the Public Advocate), the Tribunal accepted the submission that, regardless of the meaning of the term 'reasonable', the 'provision of food and water cannot be reasonable when it is provided to a person who is dying, not for the primary purpose of palliation, but with the aim of deferring or suspending the process of dying'. As such it did not constitute palliative care.
Whilst the evidence did not satisfactorily establish whether the medical treatment in question caused unreasonable distress to the patient, there were reasonable grounds for believing that, if competent, the patient herself would consider the medical treatment to be unwarranted.
The Tribunal rejected submissions by the Right to Life Association and decided that the proposed discontinuation of medical treatment in this case did not amount to a criminal act. Similarly, the Tribunal was at pains to note that their decision, in this case, in no way departed from nor threatened any ethical principles regarding the sanctity of human life, the question not being whether 'the patient's life is worthwhile, but whether the treatment is worthwhile'. The case was expressly said not to involve any issues regarding euthanasia, in the sense of that term being meant to refer to 'the taking of positive action to cause death'. As such, any decision by a guardian to refuse medical treatment in the circumstances of this case clearly met the additional requirement that it be in the patient's best interests.
It is interesting to note that the Tribunal's decision was largely dependant upon the medical evidence. In particular, a careful distinction was drawn between cases where, in medical terms, the 'treatment' in question was seen to be 'futile', as distinct from those cases where discontinuation may not be justified because the 'treatment' in question had some medical benefit for the patient. The distinction largely is between those cases where there is some diagnostic or curative purpose. In all cases it will be vital for there to be an accurate medical diagnosis and any consideration of further treatment will be dependent upon the particular prognosis for the condition being treated in the particular individual patient.
Of further interest is that the patient in this case had not herself executed a refusal of medical treatment certificate, nor appointed an agent under the MTA to make such refusal on her behalf. Had that been the case, medical treatment could be refused by the patient or their agent in circumstances that would not necessarily require the involvement of the Tribunal. Consequently, the present case required an application for appointment of a guardian. Despite the applicant seeking to be appointed as his wife's guardian so as to enable him to make the relevant decision, the Tribunal ultimately preferred to appoint the Public Advocate as sole guardian. The reason expressed for this more cautious approach was to ensure that the public be given reassurance by the appointment of the Public Advocate as an independent guardian. This decision clearly impacts on end of life decision-making processes and hospitals may need to review their existing policies in this regard.