Lives of inestimable value: life worthy of life: a response to the National Health and Medical Research Council's 'Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment.' (Australia)

Disabled People' International (Australia) only recently became aware of National Health and Medical Research Council's (NH&MRC) "Discussion the Ethics of Limiting Life-Sustaining Treatment." [1] Disabled Peoples' International (Australia) has never before entered into the biothetical debate concerning disability issues. This is partly because of the contentious issues that are involved. More importantly, however, the members of Disabled Peoples' International (Australia) are people with disabilities.

People with disabilities are some of the poorest and most disadvantaged members of Society. Hence, it is particularly difficult for people with disabilities to gain success to the resources necessary to undertake the tertiary education which is often the hallmark of success in the bioethical arena.

It is also difficult even for full-time commentators in the bioethical arena to gain control of the material in this area and to keep up to date, let alone the vast majority of our members who are still striving for access to basic human requirements associated with such areas as personal and attendant care requirements.

Major Thesis

"The arrival of a child with severe birth defects is always a tragedy for the parents, and often for other family members." [2]

This quotation from Bailey's recent book Human Rights: Australia in an International Context is fairly indicative of dominant social attitudes which see disability as involving an inherent tragedy, rather than seeing the tragedy lying in the handicapping situations which people with disabilities face in Society. It is kust a perspective which is to be found within the National Health and Medical Research Council's "Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment."

The NH&MRC's paper is ndicative of the attitudes of decision-makers who seek to eliminate many forms of disability, especially those which have a genetic basis, are commonly labeled as "severe," and are held to cost Society great sums of money. Such is the thrust of publicly funded research, of some learned bioethical theorists, and of proponents of genetic disease registration, screening, and abolition.

The central thesis that Disabled Peoples' International (Australian) has in responding to the NH&MRC paper is that having a disability is not inherently tragic; rather it is the handicapping social policies and practices which are the tragedy. It is the lack of provision of necessary personal care services which provides the tragedy to be found within the incidence of disability in the community.

Disabled Peoples' International (Australia) holds "disability has too long ben viewed as a problem for the individual and has not been seen in terms of the relationship of that individual and his/her environment." [3] Accordingly, the following definitions, which have been adopted globally by Disabled Peoples' International, are utilized within this paper and will be seen to be crucial to our response:

"Disability" is a functional limitation within the individual caused by

physical, intellectual, emotional or sensory impairments.

"Handicap" is a loss or limitation of opportunity to take part in the life of the community on an equal with others due to physical and social barriers. [4]

Critique

The NH&MRC's "Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment" notes that "good ethical decisions can only be made by knowing the needs, expectations and reasonable judgments of the community at large." Disabled Peoples' International (Australia) agrees with this perspective. However, it holds that the perspectives of the community at large, and specially the perspectives of people with disabilities, were not fully taken into account in the preparation of the NH&MRC's document.

In its "Discussion Paper on the Ethics of Limiting Life-Sustaining Treatment" the NH&MRC asks the following questions:

1) New technologies allow maintenance of life (as distinct from health) where previously this has not been possible. When are doctors are parents obliged to use them? When not?

2) The cost of health care is increasingly questioned. How are resources to be appointed? Who should be rationed?

3) What is to be done when the best ethical decision appears to be in conflict with the law, or where there is confusion as to how the law applies to a particular situation?

4) Who should decide for those unable to decide for themselves? Upon what criteria should the decisions be made?

5) Can the medical profession maintain its own standards, or do governments need to appoint regulatory bodies to safeguard the public? If needed, how would such bodies operate, and would they be effective?

6) How can ethical decisionmaking "keep up" with changing community attitudes?

In line with this the NH&MRC undertook a "study" of three gropus: 1) extremely low birth weight infants; 2) infants with spina bifida; and 3) the sick elderly. Let us examine the three studies entered into in the paper and relevant criticisms.

Entremely Low Birth Weight Infants

The NH&MRC notes that extremely low birth weight infants have an increased chance of death and disability and that neonatal intensive care is expensive, not only in terms of monetary values but stresses on parents and caregivers. It also notes that in this grouping "a few survivors will be entirely normal." [5] Disabled Peoples' International (Australia) agrees with this, however views the whole notion of "normal" as being problematic. Who may be identified as being normal? Is it the absence of disability or the presence of some form of characteristic viewed as "desirable"?

The NH&MRC makes a sketchy examination of two-called "clinical cases." In examining these, it ascribes unto the two cases probabilities of dying within several months. This is despite the fact that various social variables will ensure that individuals cases will not necessarily concur with previous statistics. The same may be said fo the likelihood of cerebral palsy, intellectual disability, and sensory impairment, which it is also gives in terms of percentages.

The NH&MRC notes that for either infant to be allowed to survive with what it calls "significant handicaps" there would be a large cost to the community. Unfortunately, it neglects to examine the potential lives of the two so-called "clinical cases" and the achievements that can and have been attained by people with severe disabilities, when the appropriate support structures are in place. In addition, the NH&MRC tends propriate support structures are in place. In addition, the NH&MRC tends to reflect dominant social attitudes when it talks of economic cost but neglects the multiplier effect which may be found in the generation of jobs and services through people with disabilities who survive.

Infants with Spina Bifida

In discussing the situation of infants with spina bifida, the NH&MRC holds that "severely affected children are at best wheelchair bound . . . ." Many members of Disabled Peoples' International (Australia) utilize wheel chairs to enhance and enable their mobility. We are not sure why utilizing a wheelchair is so inherently tragic, especially if it has a liberating effect. Here the NH&MRC displays a lack of knowledge of the situation of people with severe disabilities. This is also apparent in the use of terminology such as "intellectually handicapped" and "intellectually retarded." For some time now people with disabilities have been questioning such offensive terminology, preferring instead to talk of intellectually disabled or disadvantaged people.

In a value free way the NH&MRC advocates "non-intervention" for "severely affected children." It fails to provide an adequate definition of what this means despite referring to a particular case study and claiming that "she fulfills the criteria for non-intervention as she will not survive with less than severe handicaps." It would appear that the NH&MRC views non-intervention in this particular as involving withholding direct technological intervention of a medical nature as opposed to the withdrawal of nutrition and the possible utilization of sedation which has been reported in various cases.

It is quite clear that the NH&MRC has been influenced by the arguments of bioethicists such as Peter Singer and Helga Kuhse, especially in their underlying utilitarian approach to bioethical decision-making. However, Kuhse and Singer in their book Should the Baby Live? [26] persuasively question the distinction between killing and letting die. They rightly connect such a distinction with a very simplistic pespective of causation. For a result to occur there has to have been some form of "active" intervention. To this particular stance must be added some form of doctrine of intent. [7]

The Sick Elderly

In talking of the so-called "sick elderly," the NH&MRC notes that "there is a tendency in our Society to 'put away' our frail elderly into nursing home. . . . Negative social attitudes to ageing may sometimes result in less sensitive care, and lowered expectations regarding quality of life." [8]

It is significant that while the NH&MRC noted the problem of inappropriate instituonalization of the elderly, it neglected to consider the existing inappropriate instituonalization of people with severe disabilities and the negative impact this has upon the quality of life for people with the sorts of severe disabilities considered by the NH&MRC.

It is not proposed to discuss this particular section of the paper in further detail, due to the vast scope of this topic.

Rights

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