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Etats vegetatifs chroniques: Repercussions humaines; Aspects medicaux, juridiques et ethiques.

This book deserves our attention for many reasons, especially for the interdisciplinary nature of the research. For more than two year-s a group of researchers of different training and backgrounds - physicians, nurses, lawyers and bioethicists - have worked together on this project in the Department of Bioethics, Centre Serves, Paris, under the direction of Patrick Verspieren. The final product is not a patchwork of different points of view, but a common reflection on the vegetative state, which the English-speaking world calls "persistent" and the French, for good reasons, prefer to call "chronique."

It is evident that the approach to the problem coming from the Centre Sevres, unlike the American debate, focuses attention not on the autonomy of the person and the medical profession's commitment to making decisions according to the advance directives of the patient, but on the relational context created by CVS. The French view considers the patient in CVS within the context of his family and the medical team attending him or her, and questions the meaning of the action of all these different actors.

Through this approach we are able to see some aspects of the concrete experience of caring for a patient in CVS that are not apparent when we are concerned only with individual rights. The American bioethicist probably will be surprised to discover that French physicians are not bothered by very many requests to refrain from treating subsequent illnesses of such patients or to withdraw artificial nutrition or hydration. On the contrary, they are oppressed by extreme requests of the family, especially mothers, to treat the patient in CVS beyond any reasonable standard,

Of most importance is the chapter of the book that describes a survey about the attitudes of the families. The trauma that strikes the whole family as an organism is described, as well as the mechanisms of adjustment that allow the family system to adapt to the new situation. The most frequent coping strategy is to reduce the patient in CVS, whatever his age, to the condition of a child, who then becomes the property of a member of the family. Most of the time it is the mother who assumes an active role for this "infant": she invents again a being to whom she has given birth, as if she would conceive him anew. The new conception will end only with the death of this eternal child, who will never become an autonomous being. The mother makes of him her "thing"; she will be the only one who will be able to divine his needs and to care appropriately for him. We are deeply uneasy when we read about this unbounded mother-devotion.

This maternal caricature of religious self-sacrifice reminds the theoretical bioethicist that caring has a price that is not identical with the economic costs. "It takes life to love life," says Lucinda Madock, who has spent her long life caring for the sick of the family in Spoon River Anthology.

We become aware that proposing the family as a resource, in a rhetorical way, is not a good ethical solution. The French research makes a clear case for not charging the family with the burden of this kind of care: the family is not able to cope with these exceptional situations.

Nevertheless, the "systematic" approach used by the Centre Sevres is an important contribution to a better understanding of the human and ethical problems of the CVS. Through the relational approach it becomes clear that the communication process, from the very beginning of the patient's resuscitation, influences in most cases the response of the family. Where there is no consideration of the psychological and emotional needs of the relatives, it is more likely that a miscommunication will produce familial mistrust and aggression toward the medical caregivers.

In a relational approach the process of decisionmaking requires a negotiation with the different members of the group. It may be difficult to propose an ideal good solution that applies to every case of CVS: some families will be relieved when they see the physician renounce the struggle against every subsequent illness; others, on the contrary will be tempted to consider this renunciation as an abandonment of their sick relative, especially when communication with the attending physicians has been poor. Trust in the physician is integral to the ethics of CVS. The moral imperative for the physician's practice of good medicine in these extreme situations is to gain this trust through skilled knowledge and honesty.

Even if European bioethics maintains its tradition of stressing the relational aspects of the complex situation, it is important, especially in Europe, to take into serious consideration the preferences of the patient about the end of life. In order to give a real place to the autonomy of the individual, some radical changes will have to be introduced into the culture. It is unlikely, for example, that the process of decisionmaking will reflect the choices and values of the person as long as European physicians are reluctant to communicate the diagnosis to the patient. They must begin to consider decisions related to the dying process not only in light of the principle of beneficence (which typically reflects a paternalistic attitude), but also of autonomy. Neither American nor European bioethics seems to have the answer to the many conflicts related to CVS. But each has important single elements for a global answer. Instead of viewing the two models as competitive, we should work to achieve their integration. - Sandro Spinsanti is scientific director of the Istituto per L'Analisi Dello Stato Sociale, Rome, Italy.

Plus ca change, plus c'est la meme chose." Even though France and the United States differ significantly culturally and socially, the French debate around the ethical issues concerning patients in persistent vegetative states (PVS),

as presented in this connection of articles by the members of a multi-disciplinary study group assembled by the Department of Biomedical Ethics of the Centre Sevres in Paris, differs very little from the American.

On most issues - such as the discontinuation of artificial nutrition and hydration, the ethical significance of the difference between withholding and withdrawing treatment, and the value of living wills - the views of the Centre Sevres study group are similar to traditionally conservative views in the U.S. It is, however, worth mentioning that there are two instances where the insights the authors offer clarify the debate. First, Patrick Verspieren gives clear and convincing arguments for calling the vegetative state chronic instead of persistent. The word chronic (which implies a chance for recovery, however remote) has the great advantage of bearing no resemblance to permanent and consequently will not be confused with or substituted for it. Interestingly, the French National Ethics Committee (CCNE) uses the same terminology. Second, the authors of this book are not afraid to recognize that cost can be an ethical issue. (Indeed, cost is the only ethical issue some of them mention.)

Will foreign and/or French readers benefit from this book? Regrettably, no. There are few new ideas or insights that anybody who reads English cannot find elsewhere. The book has little value as a presentation or interpretation of the English-language literature on the topic of PVS since the ideological bias of some of its contributors has led them to some remarkable misrepresentations and misinterpretations. Two examples shall make my point.

First, Ronald Cranford is presented in a way that implies he is practically alone among American bioethicists in contending that there is no ethically significant difference between withholding and withdrawing treatment. Since the study group disagrees with Cranford's view, it is convenient to depict him as a loner. In fact, Cranford's position is consistent with the views of the majority of U.S. bioethicists as well as with the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, the American Medical Association, and the American Neurological Association.

Second, Patrick Verspieren, the director of the Department of Biomedical Ethics at the Centre Sevres, does not seem to understand that the New York Court of Appeals and the Missouri Supreme Court, ruling on the Mary O'Connor and Nancy Cruzan cases, do not stand for the "American courts taken as a whole." He writes:

When taken as a whole the American

courts hesitate to authorize the

removal of artificial nutrition. In

the case of PVS, such a treatment

modality does not seem unduly invasive

to them, and they consider it

their duty to "protect human life."

Some among them give priority to

the "principle of autonomy," however,

only when "clear and convincing

evidence" can be presented

"that the patient did not want certain

procedures to be employed

under specified circumstances."

Does this book have an agenda, and does it meet it? There seem to be two well-defined goals and a sincere effort to attain them.

Five articles in the collection deal with issues surrounding the care of PVS patients - the difficulty, the cost, and the lack of a sufficient number of care facilities in France (in the region of Rhone-Alpes, five of the twenty-one PVS patients are cared for in their homes by their mothers). The four articles by caregivers and one by the president of the National Union of Associations of Families of Brain Injured Persons make a forceful appeal to increase the number of long-term care facilities for these patients. Editions Ecole Nationale de la Sante Publique (the publisher for the National Academy of Public Health) most likely has a vested interest in making this appeal heard.

The second goal of this book is philosophical as well as political. It is to discredit the views of the French National Ethics Committee (CCNE) on the treatment and status of the PVS patient. Patrick Verspieren and Marie-Louise Lamau infer that the ideologically pluralistic membership of the CCNE cannot be trusted to safeguard adequate respect for PVS patients as full human persons or their appropriate treatment, which for the Centre Sevres group includes artificial nutrition and hydration.

Verspieren alleges that in its 1986 "Opinion on Experimentation on Patients in a Chronic Vegetative State" the CCNE "affirms that patients in PVS constitute |intermediaries between human beings and animals.'" He attempts to refute this grotesque view by arguing that we cannot rule out that PVS patients have a psychic life, some kind of consciousness, and as such are human persons in the full sense.

For Lamau, it is important to safeguard the status of the PVS patient as a human person in the full sense because, in her words, they have become "definitively silent." She rejects living wills or substituted judgments by proxies, which are ways the will of the person (and thus his or her personal individuality) can persist. In Lamau's view, PVS patients are for us "paradigms of dependence." They are totally dependent on us - caregivers and society alike - and we are totally responsible for them. Any sign of abandoning them - such as removal of artificial nutrition and hydration - would disrupt the symbolic structure of the human community. Lamau sees the role of PVS patients as symbolic of our respect for the human person. To fulfill this role their status as human beings in the full sense has to be guaranteed. At the same time, Lamau also argues that for PVS patients "the expression |quality of life' has practically no meaning." Is she arguing for a distinction between a full but only symbolic person and an actual person? I feel about her reasoning much as I feel about the entire book: it is the result of a lot of effort and sincerity, but it is unconvincing. The message we are given is that "normal" feelings and emotions that are uncomfortable or distressing not only should be repressed, but we can depend on medical experts to help us deal with such distress through the use of a medically prescribed drug.
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Author:O'Connell, Angela Schneider
Publication:The Hastings Center Report
Article Type:Book Review
Date:Jul 1, 1992
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