Caring for Persons Living with Progressive Cognitive Impairments: Ethical Guidance for the Order, the Church and Society
by: William F. Sullivan Sept. 15, 2009
A man is asked for consent by the doctor looking after his mother, who is at the end stage of Alzheimer’s Disease and likely to die within a few weeks, to give medication to manage his mother’s anxiety about dying by rendering her unconscious. May he? A scientist is asked by her supervisor to take part in research that produces stem cells using a cloning technique called “altered nuclear transfer (ANT)”. May she? In health care and biomedical research today, many ethical issues arise that are unprecedented or complex or controversial. As Catholics, we seek guidance from the Church, but there may not be specific or definitive answers in Church teaching to some questions.
There may be disputes among Catholic bioethicists, who study ethics relating to health care and biomedical research, and confusion among the laity on these matters. Catholics are also called upon to serve the common good by contributing to public debates on such issues as embryonic stem cell research or euthanasia or attention to the health needs of elderly persons and those living with handicaps. Many of these issues touch on core Gospel values like the inherent dignity and worth of every human life and concern for the vulnerable and the poor in society. In his letter for the Ninth World Day of the Sick in 2000, Pope John Paul II noted that health care has become one of the “privileged areas for the new evangelization” of society. Yet convincing arguments are needed by Catholics for the public forum and not simply a voice. In 2003, Catholic bioethicists from nineteen countries and all the continents of the world met in Toronto at a colloquium sponsored by the Canadian Catholic Bioethics Institute (CCBI) and the Canadian Association of the Order of Malta. These bioethicists proposed establishing what has become the International Association of Catholic Bioethicists (IACB) to promote cooperation among Catholic bioethicists in education and research. His Excellency, the late Théodore Arcand, then president of the Canadian Association of the Order of Malta, appreciated the importance of such an organization for the Order, the Church, and society. He understood that bioethics has become today the area in which the “defence of the faith and devoted service to the needy” is most acutely needed. Working with His Excellency, A.J. Macken, the president of the Australian Association of the Order of Malta, he energetically assembled support for the IACB from various other associations of the Order in 2004. The Canadian Association’s unwavering nurturance of the IACB has continued with His Excellency, Peter Quail, who currently serves as Chair of the IACB Governing Council. In 2009, a report of the Venice Seminar of the Order of Malta endorsed recognizing the IACB officially as one of the works of the Order and a resource for the Order’s associations on bioethics. The IACB has organized regional and international colloquia for Catholic bioethicists to enable them to discuss emerging and controversial questions. These have included care of the frail elderly, the provision of artificial nutrition and hydration, the development of business models within health care, the globalization of bioethics that has resulted in documents such as UNESCO's Universal Declaration on Bioethics and Human Rights, what is entailed by respecting human dignity in caring for dying persons and those with chronic disabilities, new technologies in stem cell research, and the goals of regenerative medicine. Between colloquia, the Secretariat of the IACB keeps its member bioethicists connected and informed of new developments in the field. The consensus statements and papers emerging from the IACB colloquia are published so that this knowledge is shared and can be the basis for further research and discussion or for the education of Catholic health care professionals and bioethics committees. In July 2009, sixty Catholic bioethicists participated in an international colloquium in Cologne, Germany, to discuss ethical issues arising from the care of persons living with progressive cognitive impairments such as Alzheimer’s Disease. These issues are among the most pressing concerns of our times and require ethical guidance. Globally the number of persons living with progressive cognitive impairments is projected to rise, doubling every 20 years from 24.3 million persons in 2001 to 81.1 million in 2040. Most persons with progressive cognitive impairments live in developing countries, which have scarce health care resources, and this proportion will increase to 71% by 2040. Currently, in some Western countries like the United Kingdom, more health care resources are required for the care of persons with progressive cognitive impairments than for patients with cancer, heart disease, and stroke combined. Nevertheless persons living with cognitive impairments and their caregivers still remain among the most disadvantaged and vulnerable members of our communities. Their needs tend to be overlooked or given low priority in health care, and the amount and quality of the supports that they receive are frequently inadequate or inappropriate. Often a stigma is attached to being or caring for a person living with progressive cognitive impairments. Caregivers grapple, without much guidance, with perplexing and sometimes agonizing ethical issues, such as how to respond to problem behaviours or safety issues while enabling as much independence and freedom as possible in the person they care for, and what to do regarding tube feeding or life-prolonging treatments. The first part of the IACB colloquium in Cologne enabled bioethicists to work out a detailed philosophical and theological framework for providing care to persons living with progressive cognitive impairments and their caregivers, not only as a potential guide for Catholic health care providers, but also to counter some prevalent views in society. One such view, reinforced and promoted by some prominent contemporary philosophers and bioethicists, is that those living with progressive cognitive impairments are no longer persons. Another is the view that the ethical obligation of the younger generation to care for the older has no basis. This view is widely held especially in Western societies that increasingly have become individualistic in outlook, and where, consequently, the positive contribution and the needs of family caregivers also tend to be ignored. Yet another challenge is the still predominant model of health care that tends to focus primarily on the physical and mental health care needs of patients with progressive cognitive impairments, while failing sufficiently or appropriately to address their relational and spiritual capacities and needs. The second part of the IACB colloquium in Cologne enabled bioethicists to discuss various concrete measures for improving the care of persons living with progressive cognitive impairments and their caregivers, and ensure an ethical culture of care provision, beginning with the Catholic community. Seventeen recommendations were agreed upon for inclusion in the consensus statement of the colloquium. Some of these were proposed to individuals to avoid language, attitudes and behaviors that depersonalize, devalue and lead to the stigmatization of persons living with progressive cognitive impairments. Other recommendations were proposed for families, health care providers, and health care organizations, such as better education on progressive cognitive impairments, on holistic, person-centered and family-centered caregiving, and on Catholic teaching on ordinary and extraordinary means of sustaining life, as well as on the helpfulness and limitations of advance care planning. Some concrete measures were also proposed for Catholic parishes to support family caregivers and to provide pastoral care to persons living with cognitive impairments and their families. Other recommendations were directed to policy makers regarding the just distribution of health care resources and research. The draft of the consensus statement of the Cologne colloquium is now being reviewed by the participants in the colloquium and will be submitted for review in a bioethics journal. The proceedings of the colloquium, which include the background papers presented at the colloquium, also are being edited and reviewed for publication soon. In addition, the main conclusions of the colloquium will be summarized for the Catholic laity and the public and distributed through associations of the Order of Malta, the IACB website, and the media. The bioethicists associated with the IACB hope, by these means, to stimulate thinking, discussion, and action in an area of health care that ought to concern us all.