Issue Six

In Rome the Pontifical Academy for Life has given qualified approval to xenotransplantation. In New Zealand the Ministry of Health has declined approval for an Auckland company to carry out clinical trials involving xenotransplantation. What are the issues raised by this emerging form of biotechnology? 

Xenotransplantation involves transplanting living cells, tissues or organs from one species to another. It includes animal-to-human transplants, which can take a number of forms: 
·         Transplantation of solid animal organs (such as hearts, kidneys, livers);
·         Cell therapies, such as the transplantation of pig neural cells and pig pancreatic islet cells;
·         The use of viable animal cells as part of a medical device, such as an extra-corporeal liver;
·         The use of animal cells in gene therapies. 

Pigs are usually the preferred donor of tissues and organs in animal-to-human xenotransplants because they are easy to breed, have the right size organs for humans and are less likely to transmit diseases than primates. 

Potential Uses of Xenotransplantation 
There is a worldwide shortage of human donor organs for transplantation, and people often die while waiting for a suitable donor. Xenotransplantation is seen by researchers as a means of overcoming the chronic shortage of donor organs. Overseas research into organ xenotransplants has centred on the transplantation of pig kidneys, livers, and hearts into humans and primates such as baboons and chimpanzees. Research has also been conducted into xenotransplantation as a means of treating degenerative neurological diseases; for example, by injecting fetal pig neurons into the brain of a person with Parkinson’s Disease to increase the release of dopamine.

In New Zealand xenotransplantation is being investigated as a cure for diabetes. Auckland company Diatranz has been carrying out research into the use of porcine pancreatic cells as a means of treating Type 1 diabetes. The Diatranz technique involves encapsulating pig pancreatic islet cells (which produce insulin) in a coating designed to prevent their direct interaction with the patient’s immune system. A small container is surgically implanted into the abdomen of the patient and some time later, pancreatic cells from a two-week old piglet are inserted into the container. These cells have the potential to begin releasing insulin as they mature. 

Medical and Safety Issues 
Researchers are working to overcome two major medical problems with xenotransplanation. The first of these is the rejection of the animal tissue or organ by the person’s immune system. When pig organs are transplanted into primates, they are swiftly rejected as a result of the action of several forms of immune response. Scientists have genetically modified and cloned a strain of pigs to lessen the immune response pig organs trigger in recipients. The survival time of organs from these pigs in non-human primates is greater than that from unmodified pigs, but does not yet parallel that of human-to-human transplants. Research is also continuing into the development of immuno-suppressant drugs to help prevent rejection. The involvement of several major pharmaceutical companies in xenotransplantation stems from their interest in the drugs needed to support xenotransplantation. 

The second major medical safety issue with xenotransplantation is the possibility of cross species infection. In particular, the potential activation of pig retroviruses in humans is a matter of fierce debate among researchers. A retrovirus is a virus which inserts itself into the DNA of its host cell, and is copied with the cell’s DNA when the cell replicates. The retrovirus is thus present in every cell in the organism, although it may cause no harm to its host organism. 

Pigs have sequences in their DNA which code for retroviruses known as porcine endogenous retroviruses (PERV). They are harmless in pigs but could potentially cause disease in humans. A great deal of research is being conducted to determine whether PERV infection poses a real threat to the human population through xenotransplantation.   The research is not yet conclusive, but is made difficult by the fact that infection may not become obvious for many years after the animal organ has been transplanted into the recipient.

Researchers and regulatory authorities are acutely aware that HIV is a retrovirus that existed harmlessly in a species of monkey before it crossed into the human population, where it causes AIDS. Although not a retrovirus, BSE was considered to be of no significant risk to humans until it spread from cows into the human population as Creutzfeldt-Jacob Disease. The possibility of a similiar event involving PERV infection transmitted through xenotransplantation cannot at this stage be conclusively ruled out. Clinical xenotransplantation trials in humans thus raise complex safety and ethical issues.

Informed Consent and Confidentiality 
While an individual may benefit from xenotransplantation, there is a possible risk to public safety through the transmission of pig retroviruses into the wider community. To protect relatives and the rest of the community, it is generally considered that xenotransplant recipients would have to agree to life-long rules which would seriously limit their freedom; for example, never travelling outside their country, not having children, identifying their sexual partners to authorities, and being monitored by authorities. 

Because the risks involve not just the patient but other people as well, a new model of informed consent is needed for the recipients of xenotransplants. The traditional model of informed consent centres on the agreement of the individual patient to participate in a clinical trial or treatment. The need for other people to be monitored means that the informed consent process must include them as well as the xenotransplant recipient.

The normal requirement for patient-doctor confidentiality will also need modification for the recipients of xenotransplants, for example, in relation to the involvement of family and close contacts in the consent process. There may also be a need to require recipients of xenotransplants to declare their medical condition in particular situations, such as when they seek to enter another country. Will it be necessary for a xenotransplant recipient to have that fact recorded in his or her passport? 

There are complex ethical and legal issues involved in setting up a monitoring process, and in placing obligations on the recipients of xenotransplants and those close to them. These issues need to be worked through as part of creating a regulatory infrastructure, and may ultimately require an international framework as well as regulation by individual nations. 

Regulation of Xenotransplantation 
The potential risk to the general public of cross-species infection is considered to be small but real. In those countries where clinical trials are proceeding, they are being carried out with the approval of a regulatory body and within a strict regulatory framework. For example, in the United Kingdom the approval of the UK Xenotransplantation Interim Regulatory Authority is required for xenotransplantation involving human subjects. In the USA, the Food and Drug Administration has a similar role. 

In Canada there has been extensive public consultation carried out on xenotransplantation. [1] The key finding of the consultation was that the majority of informed Canadians do not want xenotransplantation to proceed at this time, preferring that organ donation issues be addressed in other ways. The consultation showed that having a strict regulatory regime in place before there is any further action on xenotransplantation is considered to be of prime importance by Canadians, even those who favour it. 

In New Zealand there is no regulatory body or framework which parallels that in the UK or the USA. There has been no significant involvement of the public in the discussion about xenotransplantation, although it will be one of the many items on the agenda of the bioethics advisory body to be established in response to the recommendations of the Royal Commission on Genetic Modification. 

In July 2001 a Diatranz application to carry out in New Zealand clinical trials of its treatment for diabetes was declined by the Director-General of Health on the recommendation of the Gene Technology Advisory Committee (GTAC). Approval was declined because there is insufficient knowledge of the risks of retrovirus infection, and because of deficiencies in the application. The Minister was also advised by the Health Research Council that it would not be appropriate to approve clinical trials until a regulatory infrastructure is in place and there has been public consultation on xenotransplantation. 

In mid December 2001 a Supplementary Order Paper imposing temporary controls on xenotranplantation was introduced into Parliament. The proposed legislation was referred to a Parliamentary Select Committee, which reported back to Parliament on 28 March 2002. [2] In their report the Committee supports controls on xenotransplantation involving human subjects, with the approval of the Minister of Health being required before any clinical trial can take place. That approval will be dependent upon the application having adequately addressed health and safety risks to the public, and any ethical, cultural and spiritual issues. A proposal to exempt the Diatranz clinical trials from the legislation has been rejected in the report. The Select Committee has also supported the proposed timeframe for the legislation, which will expire on 30 June 2003 but can be extended by Order in Council to 30 June 2005. 

The Select Committee’s report and the proposed legislation will be debated in Parliament in late April. If passed the legislation will allow time for the bioethics advisory body to consider the ethical, cultural and spiritual aspects of xenotransplantation, for public consultation to take place, and for a regulatory framework to be established. The proposed legislation has  angered diabetics, who consider that the Ministry of Health is being overly cautious. Diabetics who were involved in the clinical trials held in the mid 1990’s, before they were halted by the Ministry of Health, have spoken out about the benefit they experienced from the treatment and their frustration with the current situation. Diatranz has previously carried out clinical trials in Mexico, and is now seeking to do the same in the Cook Islands. 

Theological and Anthropological Issues 
In New Zealand and overseas the debate about xenotransplantation has primarily focused on safety, with very little comment on the theological or anthropological issues. In 2001 the Pontifical Academy for Life convened an international working party which included specialists in all the disciplines associated with xenotransplantation. The scientific fields of expertise represented included human transplantation, xenotransplantation, immunogenetics, veterinary physiology, genetics, virology and microbiology. The working party also included specialists in moral theology, bioethics, anthropology, and international law. This multi-disciplinary approach enabled the group to consider not only the scientific aspects of xenotransplanation, but also to provide insight into deeper theological, ethical and philosophical issues.

The working group’s report [3] identifies several theological and anthropological issues which specifically relate to xenotransplantation. A summary of their position on these issues is to be found on page 15 in this edition of The Nathaniel Report. 

Some aspects of the theological approach of the writers of the Pontifical Academy’s document may not sit comfortably with some schools of theological thought and spirituality in New Zealand. In a country which places a high value on the environment, conservation, and respect for all life, eco-theology and Earth-centred spirituality have been natural developments. Many New Zealanders readily identify with the thoughts expressed by the Catholic Bishops of New Zealand in one of their pastoral statements: 

“Creation itself provides the primary source from which all life flows. Within creation all life forms are interconnected. Our actions, the things we use, the way we use them, and the wastes we produce need to respect the integrity of this creation. The Bible tells us in its account of the creation of the world that ‘God saw that it was good’. It is also in keeping with the traditions of the Māori of Aotearoa that we need to respect the sacredness of creation, as partners in life with the earth, the oceans, the lakes, the animal world, the mountains, the fish of the sea and the birds in our forests and gardens. From such sources, balanced by the infinite hand of God we draw all life and nourishment. Without them we face death.” [4] 

Animal Welfare 
Internationally the care of animals used in xenotransplantation experiments is being challenged by animal welfare groups. Major companies involved in xenotransplantation, such as Novartis subsidiary Imutran, have been accused of misleading the public in relation to the suffering caused to animals during experimentation. There are also strong objections to the capture and transport around the world of primates for use in such experiments. In 2000 a British animal welfare group and the Daily Express newspaper revealed documents from xenotransplantation experiments which they called “Diaries of Despair.” [5] These documents revealed that the death of baboons and monkeys was occurring within days and weeks of their receiving pig organ transplants, and that the animals endured considerable suffering between transplant and death. 

In New Zealand animal welfare is controlled by the Animal Welfare Act (1999). This law sets out a “Duty of Care” towards animals which covers the physical, health and behavioural needs of animals. It also provides for the partial suspension of the “Duty of Care” during research, provided strict conditions are met. Institutions doing research involving animals, whether they are companies, institutes or universities, are required to have an Animal Ethics Committee which gives approval for research, and an approved Code of Ethical Conduct. There are heavy penalties for using animals in ways which are outside the Code of Ethical Conduct. This system should provide for the ethical treatment of animals used in xenotransplantation in this country, but will not address the objections of animal welfare campaigners who are opposed to all vivisection. 

Conclusion 
Xenotransplantation challenges us at all levels of thought and action. It challenges our compassion for those with conditions which xenotransplantation may be able to address. The level of risk to the wider community remains a matter of research and debate. There are also questions about the use of animals and their welfare in relation to human benefit. 

To the transplant surgeon whose patients die on waiting lists for organs, and to diabetics who must endure the daily insulin ritual, xenotransplantation offers great hope. To those who must guard the health of the community,   the possibility of retrovirus transmission means that xenotransplantation poses risks. To the animal activist it is unethical and exploitative. We are all confronted with our own personal feelings about the use of animal tissue or organs in our bodies. 

Our understanding of the place of human beings in creation is at the heart of our individual and collective response. But most of all, xenotransplantation, like other forms of biotechnology, raises further questions about the limits we are willing to go to in order to delay death or to improve the quality of life. 
_________________________________________________________________________________________________

Anne Dickinson is the Director of Caritas Aotearoa New Zealand and a member of the Panel of Advisors of The Nathaniel Centre
© 2002
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[1] Health CanadaCanadian Public Health Association Public Consultation on Xenotransplantation: Final Report, January 2002  

[2] Finance and Expenditure Select Committee Report on the Hazardous Substances and New Organisms (Genetically Modified Organisms) Amendment, Part 3, Amendments to Medicines Act 1981

[3] Pontifical Academy for Life, Prospects for Xenotransplantation: Scientific Aspects and Ethical Considerations, September 2001

[4] New Zealand Catholic Bishops’ Conference A Consistent Ethic of Life: Te Kahu-o-te-Ora (1997)

[5] Daily Express Terrible Despair of Animals Cut up in Name of Research, 21 September 2000

 “What occurs at the cellular level inevitably affects the structures of which the cells are the basic unit, and their physiological performance, with consequent effects at all levels of human existence. Accordingly, the process of aging manifests itself in the body, the behaviour, the attitudes, the feelings and the self-image; it has large social consequences on social relations, performance and on the economic condition of the individual and the community in which he or she lives.”                           Abbot John Bamberger

Introduction – Population Trends in New Zealand 
Interest in the topic of aging has grown considerably in our culture in recent years, as demographic shifts become more obvious and we become better informed. The field of gerontology is a specialised one that was non-existent some fifty years ago. Now, however, the political influence of “Grey Power” is very significant. In the United States of America, for example, the Association of Retired Persons has 33 million members over the age of 55. This represents 20% of voters. In New Zealand the 65 age group currently comprises 12% of the total population. 

Along with other nations, New Zealand has an ageing population. Birth and migration levels are no longer sufficient to offset the rise in the average age of the population. There is a decreasing proportion of children. The ratio of young to old was 2:1 in 1999 compared to 8:1 [eight children for every elderly person] at the beginning of the last century. There is also an ageing labour force. It is estimated that by about 2040 the number of deaths will, for the first time, outnumber births in real terms. In the next ten years alone, while the number of births continue to fall, the population aged 65 and over will grow by approximately100,000 reaching some 566,000 by 2011. 

It is also clear that the makeup of the elderly group itself is going to change. By 2051 there will be more than six times [290,000] as many people in the 85 and older group than there were in 1999 [45,000]. It is thought that the 85 group will account for 6% of all New Zealanders in 2051. This is particularly significant on a number of counts. There will be more centenarians. Those over the age of 85 are much more likely to be dependent, because there is a significant rise in the incidence of disability with age and an increased need for healthcare and social support. Currently, the task of providing help to the elderly still falls mostly on the family and friends of elderly people. However, the general decline in the size of families will mean fewer children to care for their ageing parents. The ability of children to provide care may also be diminished due to delayed childbearing and the fact that these parents may still have dependent children. It also possible that in the future many elderly people will not be parents. 

The reality of an ageing population and an ageing and shrinking workforce raises a number of important issues, at the heart of which is the challenge posed by different understandings of the principle of autonomy. Ultimately, there will be more people requiring care, and there will be greater pressure on institutions and caregivers to do more with fewer resources. In this environment it will be possible for the elderly to lose even more of their autonomy because of the drive for even greater efficiency and cost cutting in aged care facilities. In the face of these constraints we must be even more committed to upholding and nurturing the principle of respect for autonomy. In this paper, I will argue that a particular understanding of autonomy – one that is rooted in community – needs to influence the culture of care of the elderly. Such an understanding can provide insight to enhance the resolution of ethical dilemmas in aged care. It can also strengthen the culture of care for the elderly. I will also argue that certain understandings of autonomy can potentially diminish the self-worth of the elderly.

Understanding Individualism 
Respect for autonomy is a well-established principle of ethical theory and is recognised in the New Zealand Code of Health and Disability Services Consumers’ Rights. For example, Right 1 states: “The right to be treated with respect, including the right to privacy and the right to be provided with services that take into account the needs, values, and beliefs of different cultural, religious, social, and ethnic groups, including the needs, values, and beliefs of Māori.” Other rights include the “Right to dignity and independence”, the “Right to effective communication” and the “Right to be fully informed” [so as] one can “make an informed choice and give informed consent.” 

The principle of respect for autonomy is very broad in its scope, and refers to a cluster of concepts including self-determination, the right to privacy, individual choice and self-rule. This in itself leads to a number of different understandings of autonomy since all the above concepts are culturally dependent and also differ according to basic assumptions about humans and what it is that makes us flourish.

Our understanding of autonomy as an important principle flows from the deeper cultural value of individualism. Charles Taylor sees the developing understanding and awareness of individualism as the “hallmark” of modern freedom: “We live in a world where people have a right to choose for themselves their own pattern of life, to decide in conscience what convictions to espouse, to determine the shape of their lives in a whole host of ways that their ancestors couldn’t control. And these rights are generally defended by our legal systems. In principle, people are no longer sacrificed to the demands of supposedly sacred orders that transcend them.” [i]   The twin concepts of personal dignity and personal rights, which are also reflected in the Catholic notions of the sacredness and dignity of persons, are a measure of the gains made by the developing awareness of individualism. 

However, the shadow-side of this development has been the loss of a broader vision of the human person due to an excessive centering on the self. This has led, among other things, to a belief that the individual is prior to society. In a society where such a belief dominates, individuals stand side by side but have few or no bonds holding them together. This perspective surely reflects an impoverished view of the human person and the world in which we live – one that makes our lives poorer in meaning for the fact that we find ourselves, even unwittingly, less concerned with others in society.

What is harmful, then, is unbridled individualism, that is, a focussing on myself, the individual, as the sole end of all that is, an individualism that is not tempered by openness to the common good. [ii]

Honesty calls on us all to reflect on the fact that the social environment in which we are to give care to the elderly is one that has been captured, to a significant extent, by a culture of unbridled individualism. For the purposes of this discussion it is important to note that unbridled individualism brings to birth a very different concept of autonomy than one that recognises that we ultimately find our fulfillment as committed individuals bound in kinship and friendship, that is, within communities of care. The philosophy of unbridled individualism is challenged by Māori, Polynesian and traditional cultures, which accord their elders honour and respect, and regard them as the storehouses of the moral wisdom and traditions of the community. For these communities the well being of the individual is not separate from the well being of the community no matter what the particular circumstances of the individual may be. Such an understanding also accords with the best of the Christian tradition and invites us to rethink and redefine the principle of autonomy. 

A Functional View of the Person 
For many people today there is an underlying belief that the worth of a person is defined by their ability to function. This is frequently illustrated, for people from Western cultures, by the first question when we meet a stranger – “What do you do?” If we view humanity from a functional perspective then we tend to accord respect according to an individual’s ability to function physically or mentally. 

Somewhat humorously, this world-view may be likened to the “Dealer’s Guide” for the car industry in New Zealand. The “Dealer’s Guide” is a handbook that provides market trends for car-dealers based upon the specific make and model of cars, from the base model to the super-model with all the extras; wheel trim, sun-roof, air-conditioning, etc.   A “Dealer’s Guide for the Elderly” would likely note such ‘human features’ as walking–frame or wheelchair, poor eyesight or hearing impaired. This attitude contributes to a view of older persons as “unfeeling objects with a quantitative worth to society that is based on their chronological age and accompanying features.” [iii] 

Inevitably, such a perspective devalues the person and may reinforce a concept of autonomy, which is age-specific or condition-related – surely this understanding of autonomy is too shallow. The consequence of operating out of this mindset is that we are likely to act in ways that implicitly or explicitly link respect for autonomy to a person’s ability to function as an independent and self-determining person. Then, “it is taken for granted that the norms by which personal achievement is judged are such characteristics as drive, competence, energy, competitiveness, efficiency, productivity, sexual appeal, highly defined social identity and independence of character.” [iv] 

A functional view of autonomy, or one that is age-specific or ability-dependent, does not serve us well in honouring the place of the elderly in society. According to this model, the patient suffering from dementia, or from a severe stroke, has largely lost their autonomy. We describe such patients as “dependents” and while they are to be treated with respect, such respect is a function of the goodwill of society in general, and the carers in particular. This respect is dependent always on the value that we decide to place on the elderly. Notice that the respect due such persons is now largely externally motivated rather than a response to the innate dignity of the person.

This world-view also presupposes that the longer one can maintain the lifestyle of the active, successful, healthy and satisfied adult, the more the person is considered to exemplify the model of what old age should be. In short the practices recommended all tend to deny aging and death, rather than seeing them as integrated into a final phase of human growth and spiritual transformation. [v] This latter view reflects a Christian and more holistic understanding of the aging process, one that sees aging and dependence as a key part of the life journey. 

With respect to characteristics such as drive, competence, efficiency and productivity, we all suffer diminution and loss in old age. While it is a good thing to stay fit and healthy, to focus on these things as if they were the final measure and end of life merely compounds the difficulties of the elderly. Above all, such a focus also defers any consideration of the need to integrate limits and loss as part of the aging process. 

Further, because aging affects the disciplined habits arduously created and maintained in active years, and the spiritual, social and cultural practices that the person had previously cultivated and relied upon, it may genuinely be described as a crisis, affecting the whole of one’s life. Looked at like this, ageing presents as a challenge to the meaning of life, an opportunity to embrace new horizons and broaden old ones, a critical stage in the human life journey. The realisation and flourishing of human potential thus remains very much an ongoing task for all people, including the severely disabled. Given the fact that autonomy is ultimately about a person’s self-fulfillment, then all caring efforts that are directed towards the further realisation of a person’s full potential and well being are surely a legitimate and direct response to that person’s autonomy. Most importantly, providing an environment of care which promotes the well being of each and every person, while still according them as much independence and involvement as possible, is now able to be seen as something that is demanded of us, rather than something done “for others” in a patronising way. 

What is different is that the ongoing realisation of a person’s potential may need to be more directed by others than “self-directed,” according to their state of health. This is because decreases in ability and functioning inevitably impact on an individual’s ability to make independent choices and to act independently. Also, because the process of ageing, and in particular the transition to residential care, does leave persons with a heightened sense of vulnerability, the principle of autonomy may need to be protected more by significant others – carers, family, friends – than is otherwise the case. These differences are not to be interpreted, however, as indicators of the absence or diminishment of a person’s autonomy, as a functional understanding of the human person tends to do. 

Naturally, this calls for an understanding of autonomy that is linked to qualities other than functionality and a narrow individualistic view of the human person. An understanding of autonomy rooted in community is able to provide an enhanced and richer view of autonomy. Such an understanding of autonomy does not rest on “me”, the individual, being active and assertive enough to be able to claim my rights. When respect for autonomy is communitarian in its focus, the emphasis is on the individual and the community and their mutual relationship. This is the deeper meaning of respect for autonomy rooted within community. 

Autonomy and Aged Care 
Despite the fact that there are over 25,000 residents currently in aged care facilities or nursing homes in New Zealand, there is a deep ambivalence, even antipathy, towards these institutions, which are frequently viewed as places of dependency and diminishment and, therefore, places to be avoided. In part, deeply held cultural values of independence, youthful aging and freedom of choice influence this antipathy. However, this perception is also influenced by a general distrust of institutions and by the fact that the population tends to be resistant to the reality of death and dying and the necessity of limits on freedom of choice. Accordingly, people may view these homes as “an alien place, filled with the frail and incapacitated, where one’s past has no roots or recognition, where one must join others, mostly strangers, in attempting to live a private life in a public place. … Here, personal choice and social ambit shrink in the midst of unchosen others, in dependency on caregivers whose authority govern even the minutiae of daily life.” [vi] 

In their booklet, “New Directions in Nursing Home Ethics”, ethicists Bart Collopy, Philip Boyle and Bruce Jennings, argue that there is a need to form a constructive vision of the nursing home and aged care. To view these facilities as communities of caring that facilitate and nurture the good living at the end of life, there is a need to think of autonomy as rooted in community. The ethical dilemmas that are part and parcel of everyday life for caregivers, nursing home residents, and their families, would present quite differently with an understanding of autonomy that is rooted within community. [vii] 

According to this understanding of autonomy, the personhood of the individual is not undermined or invalidated by illness. It is independent of a person’s physical, psychological or spiritual condition. As a person, the individual bears rights, liberties and interests that place strong moral and legal obligations on others to act, or to refrain from acting, on their behalf. Central in such an approach is the belief that dependency has a “positive and proper place” in human life.

Indeed, through the quality of their care, aged care facilities are able to give a richer meaning to the lives of those who are dependent upon the institution for their care and well being. Far from this being an experience of diminishment, this care can provide a model of creative interdependence both within the aged care facility and for the wider community. While these institutions may not be places of curing, they can be, and should be, places of healing, that is, of making whole, places in which the human spirit can continue to flower and mature. 

In this light, respect for autonomy can now be understood as needing to embrace the creative and enabling understanding of dependency to give richer meaning to the lives of individuals who are no longer able to be self-reliant. 

Enhancing the Culture of Care 
The challenge for aged care facilities and the caregivers who work there is to cultivate moral and ethical values, which help to situate the person within community as well as enhancing the work of the healing professions. 

These challenges include: 
·         The cultivation of an environment which helps people to appreciate the opportunities inherent in the process of ageing.

·         Remembering that the moral basis of the relationship between caregiver and the cared-for is preserved and nourished within an atmosphere of care and compassion.

·         Listening carefully to the individual’s story or narrative as the means of laying the groundwork for the healing encounter. The story of the individual can then become the guide to ethical decision making and a means of determining how the principle of respect for autonomy can be best expressed for this particular person in his or her particular circumstances.

·         Appreciating that the deeper the understanding of the narrative, the richer the possibilities for healing within the encounter. By listening we show respect for the uniqueness of the other.

·         Acknowledging that respect for autonomy is more challenging for the patient who is incapable of participating in any decision making process by reason of their physical or mental condition. In these situations, where a patient may be suffering from dementia, depression or physical dependence, the culture of the institution is vital in according the patient respect.

·         Building a culture in which all narratives are respected, whether they can be articulated or not. Through a process of careful listening to what is said, and what is not said, it becomes possible to understand what drives the biography, not only for the individual but also for the community. “The things of greatest importance to the patient, his or her hopes, fears, and ambitions, are revealed in the story. And as we hear the preceding chapters, it becomes easier to discern how the next chapter should be written together.” [viii] 

Conclusion 
The moral heart of any society is judged by how well it provides for those who are most vulnerable, particularly those who are at the beginning of life and those who are in the frail twilight of life. As citizens we live in a society which is individualistic and places great emphasis on a person’s ability to function physically and mentally. As caregivers for the elderly we are called to a radically different understanding of the person. 

As caregivers to the elderly you face the challenge to provide care based on the Christian tradition of caring for the whole person no matter what his or her circumstances. It is essential that in nurturing these values, you do not underestimate your own value to the wider society. 

Rev Michael McCabe, PhD
Director
The Nathaniel Centre
©
2002
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This article is based on a speech given by the author at the New Zealand Council of Christian Social Services Conference   – “Values, Cost or Investment?”   Wellington, 20 March 2002.

[i] Charles Taylor, The Ethics of Authenticity. Cambridge, Massachusetts, Harvard University Press, 1992: 2.

[ii] Charles Taylor, 1992: 75.

[iii] Katrina Bramstedt, “Patient Productivity as a Value and a Variable in Geriatric Healthcare Allocation”. Cambridge Quarterly of Healthcare Ethics, 2002: 11, 94-96

[iv] John Bamberger, Aging and Monastic Life. Abbey of the Genesee, United States of America. 1997: 5.

[v] John Bamberger, 1997:5.

[vi] Bart Collopy, Philip Boyle and Bruce Jennings, New Directions in Nursing Home Ethics, The Hastings Center, 1991: 7.

[vii]   Bart Collopy, Philip Boyle and Bruce Jennings, 1991: 9.

[viii] Mark Waymack, “Narrative Ethics in the Clinical Setting”, Making the Rounds in Health, Faith and Ethics. The Park Ridge Center. 1:15, 1996: 2.

2002

From the report of the Pontifical Academy for Life

Prospects for Xenotransplantation: Scientific Aspects and Ethical Considerations

1.       Human intervention in the created order 
The account of creation in Genesis lays out the hierarchy among creatures, which can also be deduced from the transcendent dignity of the human person. Our right to intervene in the created order and modify some of its aspects is derived from an understanding of the position of human beings at “the centre and at the summit” of the created order. God placed human beings in this position, not only because everything that exists is intended for them, but because woman and man have the task of co-operating with the Creator in leading creation to its final perfection. 

It is not a case of human beings “lording it over” other creatures. It is the right and duty of human beings, “according to the mandate from the Creator and never against the natural order established by him, to act within the created order and on the created order, making use of other creatures in order to achieve the final goal of all creation: the glory of God and the full and definitive bringing about of the Kingdom”, through the promotion of the human person. 

2.       The use of animals for the good of human beings
As creatures, animals have their own intrinsic value which must be recognized and respected. However they were placed by God at the service of human beings, to assist in human development and progress. Human beings have always used animals to meet their needs, for example, in the provision of food and clothing, and to assist with work. The manner in which animals have been used has varied according to different stages of civilization. Xenotransplantation is a totally new type of service of animals to human beings, but as a service it is not in conflict with the created order.

There are two opposing points of view about the use of animals to improve human health or survival. At one extreme is the belief that animals and humans have equal dignity. At the other extreme is the belief that animals can be used by humans without regard to ethical considerations. In the Catholic tradition human beings have a unique and higher dignity than animals, but humans must also answer to the Creator for the manner in which animals are treated. This means that the sacrifice or use of animals can only be justified when it provides an important benefit for humans. Xenotransplantation is considered to be such a benefit. However unnecessary animal suffering is to be avoided; there must be a real need for the procedure; and genetic modification used as part of the process must not alter biodiversity and the balance of species. 

In terms of the acceptability of xenotransplants, Catholic theology does not preclude the use of animal organs in humans. If personal identity is not affected by the transplant, the acceptability of xenotransplantation is determined by cultural and psychological factors. 

3.       Xenotransplantation and the identity of the recipient 
In addition to the two theological issues outlined an evaluation of xenotransplantation must include measuring it against the findings of philosophical anthropology, especially those that relate to personal identity. Does the introduction of an animal organ into the human body modify a person’s identity and the “rich meaning of the human body”? To what extent is such modification acceptable? 

Personal identity is the relationship of an “individual’s unrepeatability and essential core” to his/her being a person (on the ontological level) and feeling that he/she is a person (psychological level). These characteristics are expressed in the person’s historical dimension and, in particular, in the thinking and communicative structures of the head. 

Personal identity constitutes a good of the person, and is an intrinsic quality of an individual’s very being. As such it is a moral value, and there is a right and duty to promote and defend the integrity of the personal identity of every individual. The integrity of personal identity therefore provides an ethical limit to the degree of change which xenotransplantation may be allowed to bring about in the human recipient of an animal organ. Some organs are primarily functional, whereas others have a strong personal symbolism or are intimately linked to the identity of the person. The specific functions of the brain and reproductive organs link them indissolubly to personal identity, and therefore xenotransplantation involving these organs can never be morally legitimate. The acceptability of xenotransplants of other organs with strong personal symbolism will depend upon the subjective response of the individual, and need to be assessed on a case-by-case basis.

The full report can be found on the website of the Pontifical Academy for Life www.aca d emiavita.org

Our daughter, Rosa, was born on 19 September 2000. She was small but strong, with red hair and blue eyes. For twelve hours we cradled and rejoiced in our new, healthy, beautiful baby. But this was not to last. To our shock and initial grief, later that day Rosa was diagnosed with Down syndrome and our neatly imagined future disintegrated. We took Rosa home to the security of loving family. 

Those early days were difficult, but we found strength and confidence in Rosa’s calm and peaceful nature. We loved her and began to cherish the experience we were being led into.   But this too, was a calm to be shattered.   Nine days later, we took Rosa to the hospital for a routine echo-cardiogram only to learn that she had a serious heart condition.   The doctors did not know whether Rosa would even survive the night. Our slim hopes lay with the video of her echo, couriered overnight to Green Lane Hospital, Auckland. To our relief, Green Lane believed it was worth a closer look and agreed to take Rosa for further observations, with no promise of treatment. We accepted this opportunity. 

We flew to Auckland and were immediately seen by a cardiologist. It was decided that Rosa’s condition was operable.   We waited ten days amidst the warm, caring and professional environment of Green Lane. The night before her operation the surgeon and anaesthetist discussed the procedure with us. We signed the forms and, against all parental instinct, delivered our wee baby into the arms of others. 

Against the odds, the operation was a success and Rosa came through and stabilised on life support. We permitted ourselves to dream of going home again, putting this all behind us.   But time went on and attempts to remove Rosa from the machines which breathed for her were not successful. A further ultrasound showed that Rosa’s mitral valve was simply too small to allow her heart to function normally. We sat with the medical team and discussed how we would release Rosa from the ventilator for the last time, knowing that this time she would die. 

In a private room, surrounded by her family, the ventilator was removed, and for two days Rosa lived, cradled in our arms, our loving touch, song, tears and laughter. She filled herself with her family before returning to heaven. 

Sitting in the room, holding her now still body, we were told that Rosa would probably be required to have an autopsy, at the request of the coroner. It was unbearable to think that her body, so small and broken, would again be opened.   But we were told it was a legal requirement, not a choice and we consented.   Trustingly we handed her over, not willingly. 

Two days later we returned to Wellington and Rosa was brought home. We buried her beautifully with a Mass of the Angels. We journeyed on, blessed by her beautiful soul. A year later, holding Rosa’s six-week-old sister, we unveiled her headstone, sang songs, shared prayers, and lifted the tapu on a year’s grieving. It seemed right and complete. Rosa’s life and her death were resolved. We moved forward. 

But one last and unexpected time our vulnerable peace was to be turned on its head. Just 16 months after Rosa’s death, we overheard a news item that Green Lane Hospital had a heart library in which were kept babies’ hearts obtained without consent. It could not affect us we thought.   But within days we learned that Rosa’s heart was indeed in the library. Later still it was revealed that her heart was there due to a decision made by a locum pathologist who, feeling out of his depth in investigating Rosa’s heart condition, chose to remove it from her body without consent, so that someone more qualified might be able to perform the autopsy on it at a later date.   When we asked for a copy of the coroner’s report, what we received we now realise was not the completed report. It is clear that the knowledge that her heart had been removed was actively kept from us. 

We were plunged back into the grief of one year before. This time it was not softened by the trust in the wonderful care we had known at Green Lane. Instead, we felt betrayed by those we had known and who had shared the intimacy of our journey.   And we ourselves had failed to protect our baby from this final careless and callous action.    We were at once grateful for all the care and aroha shown by the staff at Green Lane and deeply hurt that this could have been done to our daughter, behind our back. 

Throughout Rosa’s short life we were given full information and advice. With this information we made the best choices we could make for Rosa as we faced these hard decisions.   But this role for parents does not end with death. Amidst the pain of loss, one finds the beginning of healing in upholding the dignity of her life, the meaning of her death, in preparing a beautiful liturgy, and in making the best decisions we can. This role must not be denied to parents through paternalism.   We have a right to be asked and to make decisions for our daughter in life and in death. 

How do we resolve this, make it blessed and whole? We don’t know yet.   We are compelled to investigate why it happened, to ask hard questions, emotional questions.   We know that many people are questioning systems as a result.   If there is meaning to be found, it is that the lessons learned from the theft of Rosa’s heart will prevent the same mistake happening to others, that dignity and humanity will come first in such decisions in future, and that it is harmful to parents to be denied the information and choices that are available.
_____________________ 

Rachel Nankivell & Peter Zwart, Rosa ’s parents, live in Petone and have two other children, Henry and Maria.

©
2002

On February 22, 2002, the Pontifical Council for Social Communications released a document entitled “Ethics in Internet”. A summary of this article is presented below. 

The internet is the latest and in many respects most powerful in a line of media that have progressively eliminated time and space as obstacles to communication. The fundamental ethical principle is whether the internet is contributing to the integral development of persons. 

The common good provides a second basic principle. Solidarity is the virtue that disposes people to protect and promote the common good. The internet can be used to break down the isolation of individuals and groups or to deepen it. It lends itself equally well to active participation and to passive absorption into a ‘narcissistic, self-referential world of stimuli with near-narcotic effects’. It will help make every person everywhere ‘a partner in the business of the human race’ only if used in the light of clear, sound ethical principles. Already the internet has been used in aggressive ways. 

To a great extent the new internet technology drives and supported globalisation by creating a situation in which commerce and communications are no longer bound by boundaries. Globalisation can increase wealth and foster development, but the benefits have not been evenly shared. Many people are experiencing globalisation as forced upon them. 

A vision of the free exchange of information and ideas has played a praiseworthy part in the development of the internet but at the same time has supported a mindset opposed to any legitimate regulation. There are some who want the internet to be a place for every kind of expression and others who see it as a vehicle of untrammeled commercial activity. 

Economic competiveness and the round the clock nature of internet journalism can also contribute to sensationalism and rumour mongering. Honest internet journalism is essential to the common good. The setting of standards requires international cooperation. 

Some Areas of Concern

• How to make the internet accessible to financially disadvantaged groups – the digital divide, a new form of discrimination.
• Protection of women’s rights in regard to internet access and other aspects of the new information technology.
• Encouraging freedom of expression and the free exchange of ideas.
• Attempts by public authorities to manipulate people either by blocking access to the internet or by propaganda and misinformation.
• Because the new technology can help instill cultural values, care must be taken to avoid cultural domination or imperialism. This applies particularly to Western secular culture.
• The sheer overwhelming quantity of information on the internet, much of it unevaluated as to accuracy and relevance.
• The medium’s implications for psychological development and health need continued study.
• Parents should supervise children’s use.
• The existence of laws against abuses such as pornography and fraud. Industry self-regulation is best and prior censorship should only be used in the very last extremity.
• Protection of the privacy of law-abiding individuals and groups while allowing law enforcement officials to exercise surveillance over criminals and terrorists.
• Protection of copyright and intellectual property rights without limiting access to material in the public domain. 

The Catholic Church, along with other religious bodies, should have an active presence on the internet and be a partner in the public dialogue about its development. When based upon shared values rooted in the nature of the person, the intercultural dialogue made possible by the internet can be a ‘privileged means for building the civilisation of love’ and make an enormously valuable contribution to human life.  

For the full article visit www.vatican.va

Rosa Therese had a significant impact on the lives of many - myself included. I met her late one evening shortly after her birth in September 2000. Her parents, Peter and Rachel, had asked me to baptise her. She had been diagnosed earlier that day with a serious heart condition and was to be flown to Greenlane Hospital the following morning for further assessment and possible treatment. 

In the weeks that followed we frequently discussed the various treatment options for Rosa. Although such discernment was very difficult at times I was left with a strong impression that due process had been followed over the decisions to treat her. Indeed, from a distance, I was impressed by Peter and Rachel’s accounts of the wonderful care and the excellent communication between them and the staff at Greenlane Hospital. Great care, it seemed, was taken in helping them understand the benefits of proposed treatment options together with the possible burdens for Rosa.

After her surgery, further tests revealed that Rosa’s mitral valve was too small for her heart to function normally. At that point Peter and Rachel had to consent to one of the most difficult decisions parents ever have to face - to withdraw ventilation, because it was medically futile. Even so, the wonderful care Rosa had been given continued up to the moment of her death. Her funeral, a Mass of the Angels, and burial, left me and the friends and family of Rachel and Peter with a profound sense of privilege – the privilege that comes from walking with families on their life journey. We were left with the sense that we had travelled a very difficult path together and that we were all the richer for it. 

The power of that journey only serves to highlight the profound sorrow we now feel when, some sixteen months later, Peter and Rachel have to revisit the whole process of Rosa’s life and death. The betrayal of trust caused by a failure to obtain informed consent to remove and keep her heart during autopsy has reopened wounds that had begun to heal, inasmuch as they ever do. 

What is it about medical decision-making that makes the nurturing of trust so difficult? Why do we continually see examples of decisions being made without the process of informed consent being respected? Does an emphasis on the scientific or the biological automatically preclude a sense of shared humanity between the doctor and his or her patient? Does a heavy workload inevitably mean there is little or no room to be aware of the patient as a person? Does a powerful technological imperative imply that the end justifies any means?

When trust is betrayed, whether by an institution such as medicine or an individual within this institution, the patient and their family are left with a profound sense of vulnerability. Inevitably such a betrayal strikes at the core of the doctor-patient relationship and weakens the culture of care.

Rev Michael McCabe PhD
Director
The Nathaniel Centre

©
2002