Autonomy and Community Care: Are They Compatible in Aged Care?
Issue 6, April 2002
"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.
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]
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.
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.
Rev Michael McCabe, PhD
The Nathaniel Centre