Guest Editorial
Will legislation make a difference?
Sheryl deLacey
School of Nursing, Flinders University, Adelaide SA
PP: 003 - 004
Article Text
When I entered the nursing profession some two decades ago, I couldn't have imagined that one day we'd be contemplating a law to regulate how, when and in what circumstances we are allowed to die; but death is no longer the natural end of life it was then. Nowadays, it seems that we only die if it is absolutely unavoidable and many succumb still fighting. Science and medical technology have made it possible to prolong life and many believe we should do so no matter what the cost.
Many others, however, attest to the lack of dignity inherent in this approach and the need for people to be able to die not only when their 'time is up' but how, when and as they wish, particularly if in a state where they are unlikely to lead a meaningful and fulfilling existence.
Earlier this year the Institute for Bioethical Studies in Adelaide held a public forum to appraise and discuss the South Australian 'Consent to Medical Treatment and Palliative Care' Bill (May 1992). Developed by a Parliamentary Select Committee on Law and Practice relating to Death and Dying, the Bill has been modified since this forum and is due to be tabled in the South Australian Parliament in its next sitting. The legislation proposed in South Australia addresses the right of people to refuse life saving/support technologies, and if they are unable to assert their wishes, it allows the appointment an agent to represent them.
I have no argument about what clearly amounts to a recognition of a person's right to self determination. However, a question for me is whether legislation is the appropriate and most effective means of achieving this or whether it amounts to lip service? It seems to me that people have always had a right to refuse medical treatment or, for that matter, any other unwanted infringement on their person. So why is it that politicians are developing legislation to empower this basic right?
Let's face it! For many people the health care system has become so complex and paternalistic that it is no longer meeting the community's need for self determination and cost containment. 'Life at all costs' is no longer what is expected from medical care.
But will legislation help individuals to assert their needs? I don't believe so. Take the example of cardiopulmonary resuscitation procedures within hospitals. According to the proposed Bill, a patient has a right to refuse this life saving measure. This right, however, rests on the assumption that the patient is aware of and familiar with resuscitation policies within that hospital. In my opinion, patients entering a hospital are likely to assume that the professionals within it will take care of them and will consult with them when deci-sions are made concerning their welfare. They are, in my experience, generally unaware of institutional policies that expect 'routine' initiation of resuscitation, much less the benefits and risks of such a procedure.
This lack of awareness is not surprising, for despite the reality of cardiac arrests in hospital life, the summonsing of the 'crash cart' and its attendant team is the subject of great charade. Perhaps we, as health professionals, feel that it would be detrimental for patients to know that people die in hospitals and are subjected to resuscitation attempts, therefore we shroud the fact by using mysterious terms such as 'code red' or some other misnomer.
At one hospital where I worked as a registered nurse they had the practice of calling a cardiac arrest 'Dr Speedy'. One particular busy day when this misnomer had been called over the intercom many times, a patient remarked to me 'That poor Dr Speedy! Is he the only doctor on duty today? They should get him some help!' Cultural practices, such as this, serve to obscure the public's knowledge and expectation of cardiac arrest and death. Keeping patients in the dark, so to speak, acts as a restraint to their autonomy thus allowing us to continue applying our technologies 'in their best interest'. But nurses have been vocal about the need for discretion in the application of resuscitation measures and, as a result, policies have been developed in many institutions to allow decisions of 'Not For Resuscitation'. In most cases, however, the medical profession has been accorded the discretion for this decision rather than the patient and/or the family.
In 1983 the South Australian parliament proclaimed the 'Natural Death Act', which allowed people to complete a 'Living Will' stating their wishes regarding life-saving/support measures. Despite its existence for many years, patients remained unaware of the need to assert their wishes, much less aware that a law existed to enable them to do so. Nurses in South Australia pondered the issue of informing patients of this right. Funnily enough it didn't seem friendly or reassuring to ask people on admission if they wanted to be resuscitated if they arrested during their operation, or whether they were aware that their illness was terminal.
I rest my case. It is my belief that people who are not familiar with the existence or processes of resuscitation cannot effectively refuse them, nor would they be aware of the need to appoint an agent to act in their interests. Even if they were familiar, would they expect to be resuscitated at their stage of illness having accepted the inevitability of death?
It seems to me that a vital step has been missed in the process of addressing patients' rights through legislation. The issue of ensuring informed consent to or refusal of procedures is related more to processes, information transfer, general demystification of the health care system and significant relinquishing of power by those within it.
While legislation, such as that being proposed in South Australia, appears to have the intent of empowering individual autonomy, we must remind ourselves that legislation alone has so far proven to be an inadequate strategy in changing human behaviour, cultural practices and social structures.
I believe that nurses, as patient advocates, have a pivotal role in not only critically analysing proposed legislation about death or any other aspect of health care, but in reflecting on the cultural construction of health care systems and ways we can change our own paternalistic behaviour and that of others within them.
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