September 2010By Anne Barbeau Gardiner
Anne Barbeau Gardiner, a Contributing Editor of the NOR, is Professor Emerita of English at John Jay College of the City University of New York. She has published on Dryden, Milton, and Swift, as well as on Catholics of the seventeenth century.
Incapacity and Care: Controversies in Healthcare and Research. Edited by Helen Watt. Linacre Centre (17 Beaumont St., Oxford, OX1 2NA, United Kingdom; www.linacre.org). 146 pages. $18.95.
The Linacre Centre, soon to be renamed the Anscombe Bioethics Centre after the late Catholic philosopher Elizabeth Anscombe, is the foremost defender of the Culture of Life in Britain. Dr. David Albert Jones, author of Soul of an Embryo, is its present director, and its mission is to bring the principles of the natural law and Catholic teaching to bear on the moral questions arising in clinical practice and biomedical research. In the eight essays comprising Incapacity and Care, we find a powerful and unanswerable defense of the dignity of the most helpless and vulnerable among us.
Jones observes that some philosophers today contend that embryos, fetuses, and the comatose, as well as those with severe mental disabilities, are not persons because they lack rational activity and autonomy. This arbitrary definition serves to undermine the dignity of helpless human beings. Jones thinks we need to recover a sense of ourselves as substantial beings of a rational nature and be wary of linking our dignity to qualities that can be acquired and lost. After all, the recognition of our common humanity is prior to, and should take precedence over, definitions of personhood. In particular, we should have respect for non-autonomous persons based on our natural solidarity with them as members of our human community. We are all interdependent, rational beings, and if we fear the dependence brought about by mental impairment, it might be because it reminds us of our own vulnerability. Just as the Good Samaritan, by acting as he did, proved himself a neighbor, so we discover ourselves as persons when we act in solidarity with our dependent neighbor.
In his essay From Beneficence to Love, Aaron Kheriaty notes that while the Nazis sterilized intellectually disabled persons in the name of eugenics, English law today allows the same thing in the name of compassion and care. Instead of being protected from sexual abuse, persons who are incapable of consent are given contraceptives, abortions, and sterilizations, i.e., purely technical solutions to non-technical problems to fundamentally human and social problems. What the intellectually disabled need is real affection and authentic love. Even if their intellect and will are impaired, they still have a heart; they can give and receive human love. We were all profoundly dependent once and could be so again in the future. Therefore, we should recognize our solidarity with the intellectually disabled and protect them in their vulnerability, not make them more vulnerable to abuse through contraceptives and sterilization.
In Human Dignity and the Intellectually Disabled Person, Anthony McCarthy asks whether it is ever warranted to sterilize intellectually disabled persons. Nowadays we are told that they have a right to a sex life and therefore should be permitted and/or encouraged to participate in sexual activity freely. Yet since they cannot give their consent, they are in fact being raped, when the perpetrator is in a position to understand the significance of the sexual act. Those who take care of profoundly intellectually disabled persons are urged to give them contraceptives or have them sterilized, even though such measures lead to their being raped on a regular basis. Since the intellectually disabled are unable to consent to sexual acts, they are unable to consent to sterilization too, so there is no justification for the permanent disabling of a very important function when the operation is unconnected with their overall health. It might be argued that an intellectually disabled woman suffers harm if she has an abortion or gives birth to a baby that must be taken away, so sterilization is for her own good. The answer is that a direct attack on her body is incompatible with the virtue of respect for health as a good with claims of its own. We should oppose this ongoing mutilation.
Helen Watt, in Justifying Research without Consent, tells how in 2004 a Belgian bioethicist proposed that a patient in a persistent vegetative state (PVS) might be treated as a person-void body and used for experimental research, such as for the transplantation of organs from animals (xenotransplantation). Then, in 2006, Australian bioethicist Robert Sparrow suggested that, to avoid a public backlash, PVS patients might be co-opted secretly without prior consent for experiments like xenotransplantation. Watt calls this a bodily invasion that would bring serious lasting harm, and no health good, for the subject. Although she once believed that there should be a prohibition against all invasive non-consensual non-therapeutic research on those without capacity, she now thinks that intellectually disabled persons could be allowed to contribute to the welfare of others, especially the group to which they belong, as long as they are safeguarded from subtle coercion, serious risk of medical harm, and research intending, and not just tolerating, adverse effects for those unable to consent. In case of doubt, she thinks we should err on the side of shielding non-competent people, who are owed more protection than competent people. She finds it easy to see how mentally disabled people could be exploited, in a world which often sees their very presence as a medical failure.
Wendy E. Hiscox, in her essay Non-Voluntary Euthanasia in the Netherlands and Belgium, shows how voluntary active euthanasia (VAE), after legalization, does not remain within its initial boundaries but seeks to expand. In the Netherlands, where VAE has been allowed for over twenty years, empirical data shows widespread violation of guidelines and growing public approval of non-voluntary active euthanasia (NVAE), i.e., the killing of incompetent patients those who lack the capacity to request death. The initial Dutch requirements for VAE included a voluntary request, unbearable suffering, consultation with a second physician, and a report to authorities. In practice, each of these requirements has been modified or ignored. Official studies have revealed a lack of accountability and a growing practice of NVAE giving lethal injections to disabled newborns and implementing the Groningen Protocol for euthanizing children up to the age of 12. Doctors are rarely prosecuted, and when they are the penalty is laughable, as in the case of a doctor convicted of murdering an 84-year-old comatose woman who received a suspended sentence of one week in prison and was allowed to continue his practice. In Belgium, where VAE was legalized in 2002, NVAE is growing. A 2007 study showed that about half the deaths of babies in Flanders were the result of NVAE, and almost seventy percent of physicians surveyed either admitted to having used lethal drugs to kill newborns or to conceiving of using them.
John Finnis, in his essay The Mental Capacity Act 2005, examines this recent English law, which provides for various kinds of proxies to make decisions for non-competent persons. He says it is seriously defective and capable of facilitating both injustice and moral decay because it does not protect individuals and the community from those who by reason of conflict of interests, partiality, and other unconscionable motives wish to make unconscientious and wrong choices. With regard to a patients best interests, the Act speaks of past and present wishes and feelings, the beliefs and values that would be likely to influence the patients decisions, and other factors that might likely be considered (italics in original). This unrooted subjectivity is a deep weakness in the Acts treatment of best interests. It should have directed attention to the patients life, health, virtue, and integrity, the objective good, rather than the wishes and feelings of someone who may be incapable of sound judgment, or be in the grip of wrong-headed views about his or her own worth. Also, Catholics wanted a clause in the Act excluding any purpose of bringing about death, but instead got a clause stating that the proxy must not be motivated by such a desire. Besides this, parliament opposed amendments that would have invalidated an advance directive manifesting a suicidal purpose. Little wonder that the advocates of euthanasia saw the Act as a launching pad for physician-assisted suicide. As a result of this Act, it is now assault if a care-provider treats a patient in defiance of his suicidal advance directive.
Johanna Valiquette, in PEG Tubes in End-Stage Dementia, explains that one sign of end-stage dementia is the incapacity to eat or drink, coupled with difficulty swallowing properly. Studies show that inserting a percutaneous endoscopic gastronomy (PEG) tube often does not prolong life, and that the tube is inserted in part because it is less labor-intensive than hand-feeding and brings higher reimbursement from insurers. Since the principle of proportionality holds that the burdens of a given treatment should not outweigh expected benefits, it should be considered that the patient suffers distress from the hospitalization needed to insert the tube, and then has to endure increased incontinence, painful hygiene, irritation of sensitive skin, and the interruption of human contact from hand-feeding. Agitation ensues, and his final days turn into a tug-of-war with caregivers, making sedatives or restraints necessary.
Lastly, A.A. Howsepian, in Very Quiet People, notes that the word vegetative, in the phrase persistent vegetative state, coined in 1972, has a pejorative connotation. It is more accurate to use the term hypokinetic to emphasize the patients profoundly restricted ability to move. There exists a continuum of conscious states, and even at the pole of minimal consciousness there could be intermittent, and often very difficult to detect, behavioural evidence of being conscious. At this time, we have no certain test for determining who is wholly unconscious and who is only locked in. There is as yet no generally accepted neural correlate to human consciousness, and only recently was the cerebral cortex shown not to be necessary for consciousness. Since we cannot know when consciousness is present but not apparent to an outside observer, we must endure and suffer with these very quiet people in the midst of their silence and our uncertainty.
Incapacity and Care is a truly noble testimony to the love that the faithful Catholics of the Linacre Centre have for the most helpless and vulnerable human beings on earth.