IDENTIFYING THE PROBLEM
The ageing of the population and advances in medical technology have combined to create a problem in making some decisions about medical treatment. In particular, the issues arise with end-of-life situations when a person, because of a disability, lacks the capacity to exercise their autonomy by consenting to or refusing medical treatment. Rothschild refers to the ‘medicalisation of death’ in concluding that: ‘The law lacks consistency and clarity, not having evolved with the same momentum as medical science and patient rights’ (Rothschild 2007).
Too often there is a lack of clarity surrounding the treatment decisions that are taken on behalf of people who lack capacity and this can be particularly troubling when end-of-life decisions are involved. Problems can arise from the level of understanding of the law on the part of medical practitioners, the extent to which clinical decisions over-ride other factors, uncertainty in the process of determining the best interests of the patient, the role of family members and the managing of disputes. Too often, it appears that the outcome is the provision of treatment that the patient, if competent, would not have agreed to.
The fact that the population is ageing is well established. For example, according to the Australian Bureau of Statistics (ABS) in the 4 years to 2006 while the number of Victorians under the age of 60 was projected to increase by 2.8% those over the age of 80 was projected to increase by 19.1% (ABS, unpublished, 2002). Ageing does not by itself, of course, inevitably affect a person’s capacity to make an informed decision about their own medical treatment. However, ageing statistics assume far greater significance when placed with data on the incidence of dementia. Over the age of 60 years the prevalence of dementia doubles every 5 years of age. Estimates of the proportion of persons affected at the age of 85 range from 24% (Australian Institute of Health and Welfare (AIHW) 2007) to 32% (Access Economics 2003).
Among the advances in medical technology are those that have the effect of sustaining life in circumstances in which a person would previously have died. Paradoxically, fewer difficulties seem to arise with life-sustaining technical equipment. Extubation is commonplace and, while such decisions are undeniably difficult, they are less problematic than ceasing the provision of medical treatment in the form of artificial nutrition and hydration.
This treatment, often referred to as enteral feeding, can be administered on an ongoing basis using a percutaneous endoscopic gastrostomy (PEG). A tube is surgically inserted into the stomach when patients have difficulty swallowing as a result of injury or disease. This, relatively simple, form of medical technology has only been available for about 25 years. Doctors Gauderer and Ponsky, the physicians credited with inventing the PEG tube in 1979, did so for the purpose of treating children. They did not envision PEG feeding being used for end-of-life care. Ponsky (2005) is quoted as saying, ‘It never entered our minds this would produce such a massive ethical dilemma’.
The causes of the dilemma of which Dr Ponsky speaks are many. Arguably, it arises in part because of human reactions. Consumers of health services are more able to comprehend the notion of feeding in comparison to the abstruse intricacies of other medical treatments. There is something far more emotionally difficult about ceasing to provide food and water than there is about switching off highly technical life support machines. Perhaps it is because people with a disability are compared in their degree of dependency to newborn infants who are totally dependent on others for food and water, or as Riet et al. (2006 p 183) suggest:
The provision of medically administered nutrition and hydration for the terminally ill patient is indeed a controversial issue. Eating and drinking are basic to our survival, and in society food has symbolic overtones involving nurturing as well as religious, cultural and social values. The giving of food and drink is an act of love, steadfastness, compassion and hospitality.
The dilemma is compounded by those who claim that removing PEG feeding is inhumane as it results in a painful and slow death from thirst and starvation. Such comments not infrequently come from proponents of euthanasia who argue that there should be a positive act to bring about a quick and painless death. Even Ponsky (2005) has observed:
We take convicted murderers and give them a gentle death by injection and we take someone like Terri Schiavo and decide she has to die and make her suffer weeks of dehydration and malnutrition and loss of dignity rather than provide a rapid euthanasia. It’s a paradox.
While more problems arise as the population ages, younger patients have publicised the issue. Cases such as Schiavo in the US and Korp in Victoria demonstrate this.
Terri Schiavo suffered brain damage as a result of a heart attack. She was sustained by PEG feeding – and other excellent nursing care – for a period of 15 years until her death in March 2005. During that time the rights and wrongs of ceasing treatment were debated within her family, the media, the general public, and in courts. The dilemma her treatment presented would not have arisen two decades before.
The same dilemma about ceasing enteral feeding arose with Mrs Korp.1 Her condition was described as one of post-coma unresponsiveness (PCU), a term preferred in Australia to that of ‘vegetative state’, which was used previously and is still used elsewhere. It is defined by the National Health and Medical Research Council (2003) as being applied:
… to patients emerging from coma in an apparently wakeful unconscious state in which there is:
- a complete lack of responses that suggest a cognitive component;
- preservation of sleep-wake cycles and cardiorespiratory function; and
- partial or complete preservation of hypothalamic and brain stem autonomic functions.
- preservation of sleep-wake cycles and cardiorespiratory function; and
While decisions were made about removing Mrs Korp’s tracheostomy, whether to aggressively treat infections, not to return her to the intensive care unit (ICU), and not to use cardiopulmonary resuscitation, the critical remaining decision was whether or not to cease to provide artificial nutrition and hydration.
The treating clinical team had the power to cease treatment (other than palliative care) that was futile, overly burdensome and not in Mrs Korp’s best interests. However, they were deterred by the media interest arising from the circumstances leading to her injuries and the contemporaneous death of Terri Schiavo. Comparisons were inevitably made between the two cases despite significant clinical differences. Further, decision making was complicated by the public statement of Mrs Korp’s husband, who had been charged with her attempted murder, that he would oppose in court any attempt to cease treatment. He argued that his wife, as a devout and practising Catholic, would want treatment continued indefinitely.
Consequently, the Public Advocate2 became the guardian of last resort following an application by the hospital to the Victorian Civil and Administrative Tribunal (VCAT). The principal question for the tribunal was who was suitable to be the guardian. Her husband had a conflict of interest, her daughter declined the onerous responsibility and other family members were rejected. The decision to appoint the Public Advocate illustrated the importance of the protective legislation in ensuring that a substitute decision maker is able to act solely in the best interests of the person with a disability.
Powers given to the guardian included the making of decisions about medical treatment. While it was clear that enteral feeding did, within Victorian law, constitute medical treatment and could therefore be refused, this had not always been the case. An earlier dilemma for medical practitioners in Victoria had been the vexed question of whether it constituted medical treatment (which could be refused) or whether it constituted ‘palliative care’ (which could not be refused or withdrawn). It was a question that had caused problems since the passing of the Victorian Medical Treatment Act 1988.
The dilemma was resolved by the Victorian Supreme Court in the case of Mrs BWV (Gardner 2003). Mrs BWV, who was aged 69 and suffering dementia, had been unresponsive for 3 years and appeared to have no cognitive capacity. Her general practitioner, who was providing excellent care, believed he had no choice other than to continue providing enteral feeding.
The court held that PEG feeding was medical treatment and could therefore be refused by the guardian on behalf of Mrs BWV (provided that certain conditions required by the Act were met). While the decision deals with Victorian law, its application might be wider. Skene (2004) considers that it will be followed elsewhere in Australia while other commentators have urged health policy makers to incorporate the court’s findings in both practice and policy in Australia (Mendelson & Ashby 2004).
The guardian for Mrs Korp could therefore lawfully decide to withdraw treatment, provided doing so was in her best interests. An investigation to inform that decision included reviewing the tests and clinical observations upon which medical advice was based, her prognosis, the options for treatment, and the risks associated with all options. In addition to written reports, numerous meetings were held with various specialists, including neurologists, physicians and palliative care specialists, as well as with nursing staff. At these meetings the medical opinions were questioned and tested.
The investigation also centred on ascertaining Mrs Korp’s wishes and values. Enquiries were made of family, friends, work colleagues, neighbours and her priest. It was concluded that there was no evidence of her having expressed views or wishes about medical treatment. It was also concluded that she was a devout and practising Catholic.
Clinical advice indicated that Mrs Korp’s condition was continuing to deteriorate and that despite periods of stability at a lower level than before, it had not been possible to achieve ongoing stability. Despite maximal artificial nutrition and hydration she was continuing to lose weight and her muscles were wasting, leading to severe contractions of her limbs and difficulties in maintaining a number of internal functions. Treatment other than palliative care was futile.
Under Victorian law a guardian can refuse medical treatment if it causes unreasonable distress or if it is considered that the person themselves, if competent and fully informed, would have considered it unwarranted. Given the level of controversy the latter element was explored by applying the medical facts to a statement by the former Pope on the issue of withdrawing nutrition (Pope John Paul II 2004). A Catholic priest, expert in ethics, was consulted and agreed that withdrawal was consistent with this statement.
A decision was made to withdraw treatment other than palliation and Mrs Korp died within 9 days, after almost 15 weeks in hospital. One factor that was not considered relevant by the guardian was that of the cost to the medical system of ongoing treatment. Any hospital faced with such a situation would find that the contentiousness of the decision would impose large cost pressures even though the clinical view was that the treatment was not warranted.
THE POLICY RESPONSES
The first observation that should be made is that the Australian legal system has addressed this problem reasonably effectively by providing a mechanism for resolving most issues about withdrawal of life support treatment decisions. It has done so in a way that is relatively inexpensive and quick.
It has for centuries been the duty of the state to protect incompetent citizens (in this case, adults) from exploitation, abuse and neglect. While Supreme Courts can discharge this duty and have powers concurrent with the Public Advocate or his equivalent in other jurisdictions, in practice they leave these matters to a guardian appointed by a tribunal. While in other types of cases guardians can frustrate hospital administrators by insisting on investigating options before agreeing to a discharge, in Korp’s case guardianship operated to the benefit of the health system. This was by deflecting criticism from the hospital, by providing it with clear legal authority to act, and by doing so relatively quickly.
Many factors differentiated the cases of Korp and Schiavo, including the stark contrast between the one guardianship tribunal hearing in Korp and the case of Schiavo, where there were many. These:
… included fourteen appeals and numerous motions, petitions, and hearings in the Florida courts; five suits in Federal District Court; Florida legislation struck down by the Supreme Court of Florida; a subpoena by a congressional committee in an attempt to qualify Schiavo for witness protection; federal legislation (Palm Sunday Compromise); and four denials of certiorari from the Supreme Court of the United States.Stay updated, free articles. Join our Telegram channel
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