La codificación francesa como referencia en la configuración de una teoría general

The principle of autonomy is an influential notion on which United States culture and the system of health care delivery is largely based. Indeed, the principle of autonomy has become the foundational principle of health care. Such a concern with autonomy conceals the fact of needing control over aging, illness, disability, suffering, and death.

However, Holstein states that to acknowledge the lack of autonomy is to acknowledge that

the human condition is beyond our control; and to give up autonomy is to admit our deep vulnerability, especially as we age.³⁹³ Furthermore, this preoccupation with autonomy relates to independence, since a person’s independence and his ability to live independently on others is symbolic of his autonomy. Within the United States, dependence has been strongly associated with weakness, incapacity, neediness, and a lack of dignity; insofar as individuals are able to resist dependency, they are able to maintain their dignity and self-respect. Holstein alleges that this strong emphasis on autonomy as independence has had a very negative impact on aging and aged persons, who find themselves increasingly in need of assistance to bath, go to the bathroom, dress, eat, and get about. It is seen to be shameful and embarrassing to admit that you can no longer perform all these tasks unassisted, and as a result many older adults will refuse for as long as possible to ask for help; instead, they struggle or simply go without their health being cared for, baths or meals rather than ask for assistance.³⁹⁴

In addition, individual choice is not the necessary condition for self-respect. Writing an advance directive or giving informed consent is only a fragment of what it takes to know that one’s dignity is respected. While there is reason to applaud the achievements that this focus on autonomy helped to create, there are equally compelling reasons to note its limits and propose alternative or perhaps complementary ways to think about ethics and long-term care. The effects of such altered thinking and the behaviors it calls for reside in the good it can bring to patients but also to all participants in the caregiving context.³⁹⁵ The most striking feature of long-term care is that adult individuals suffering from diseases and illnesses of being old experience a compromised vigor and ability to function that requires

regular care ranging from help in activities of daily living such as housework, food preparation, and hygiene to highly skilled nursing and medical care.³⁹⁶

Elders requiring care generally exhibit functional disabilities that frequently bring with them vulnerabilities as well. They exhibit various kinds of dependencies and not the independence so prized by the traditional view of autonomy that stresses values of

independence and rational free choice. Traditional treatments of autonomy simply abstract from actual examples of finite human autonomy and contexts of choice and focus instead on idealizations of autonomous action and choice.³⁹⁷ For example, in a study on the images of aging conducted on behalf of the American Association of Retired Persons, most surveyed Americans of all ages estimated that poverty, poor health, and loneliness were serious problems for people over age 65, even though they are not in practice.³⁹⁸ Thus, perceptions such as these suggest a greater degree of incapacity and need for assistance on the part of older persons than actually exists. Likewise, there are occasions when the passivity to authority of the current generation of older persons undermines their ability to maintain self-determination once it is threatened.³⁹⁹

In 2007, the British Geriatric Society admitted that the National Health Service (NHS) was failing older people, not recognizing the complex needs and dependency of the frail elderly. Such lack of care and respect for the fragile bodies of the elderly in a culture so devoted to personal comfort and costly cosmetic pampering of the body seems especially repugnant.⁴⁰⁰ For example, discharging of elderly patients, sometimes in the night without notifying relatives or caregivers, poor care by nurses uninterested and often failing to speak to patients who then feel vulnerable due to being ignored and abandoned.

In the United Kingdom, The Nurses and Midwifery Council Code (NMC) asserts that the people who need care must be able to trust the health institution with their health and wellbeing and then lists the requirements of the caring relationship, such as respect for personal dignity, friendly communication, attentiveness to the patient’s needs, treating the patient kindly and considerately, and being an advocate on his or her behalf.⁴⁰¹ The particular dependence and vulnerability of elderly patients requires even more from the carer in terms of patience and composure. Unfortunately, approaches to patients who may be confused or not fully aware of the nature of certain procedures relating to medication and monitoring often become perfunctory and insensitive. The limitations imposed by ageing, which commonly involve sensory impairment relating to sight and hearing, require the careful cultivation of a range of communication skills to provide the kind of comfort that settles worried minds and anxious hearts. In such a relationship, a smile, a word, a glance, and a gentle touch can be powerful expressions of compassionate care.

They do not exhaust the demands of care; but without them other aspects of care easily become unfeeling. It is a standard theme in medical education theory that there is a need to inculcate both humane benevolence towards the sick and suffering and also a certain emotional detachment to protect against psychological burnout. It is the former that seems in short supply in contemporary health care.⁴⁰² The list of harmful practices identified included, serious neglect of infection and pain control measures; premature discharges from hospital; detrimental moving of patients from bed to bed and ward to ward; not helping patients with eating and drinking, or using the toilet; poor attention to hygiene; leaving some patients on a commode for hours, and failure to change dirty clothing and bedclothes promptly. In this way fundamental aspects of the health, welfare

and human dignity of many individuals are being routinely undermined. Further examples of lack of respect for human dignity related to patients not being spoken to appropriately, failure to provide information or seek consent, patients being left exposed, inadequate attention to pressure sores, mixed sex accommodation, patients being left in pain and in a noisy environment without sleep, and patients being subject to abuse, violent behavior, verbal threats and indifference.⁴⁰³ In 2001, the Department of Health Standing Nursing and Midwifery Advisory Committee in the UK had reviewed

voluminous literature that shows the current standards of care often fail in maintaining older people’s dignity, autonomy and independence, and confidentiality.⁴⁰⁴

Thus, care of the elderly is becoming an ever more urgent issue that need to be addressed, in order to prevent suffering for countless vulnerable members of society. To tackle this problem, there is a need for more realistic understanding of the demands on those caring for the dependent elderly, and attention to the cultivation of those qualities of mind and heart needed by health care providers. A Swedish study suggested three themes that illustrate positive and negative aspects of ageing and vulnerability in relation to dignity. They were the unrecognizable body; fragility and dependence; and inner strength and a sense of coherence.⁴⁰⁵ The data from the studies provide rich perspectives from older people on their views and experience of dignity and indignity and suggest factors or components that contribute to or detract from dignity in practice.

Demonstrating respect for a person helps to preserve their dignity. Webster and Bryan believe that communication is the mediating factor in maintaining control, independence and dignity. Their research demonstrates that older people value being included in discussions and decisions about their care. This not only enables them to feel

more in control of the situation, but also helps to maintain their independence and, consequently, their dignity.⁴⁰⁶ This is also a finding in a study by Baillie; interestingly, in his work, the respectful nurse was considered to be a far more important issue to the patient than it was among the nurses themselves. It is extraordinary that nurses in this study were often unaware of how their interactions could affect people’s dignity. A sense of self-worth can be very fragile and is easily damaged, particularly in a healthcare setting, when individuals are subject to abuses of power.⁴⁰⁷

Thus, the view that people have inherent worth plays a major role in everyday medical practice and can greatly contribute to enhance the quality of the doctor-patient relationship. More concretely, this vision helps to keep alive in the minds of health care professionals the conviction that each patient, no matter what his or her diagnosis, is not a case, a disease, or a room number, but a person that deserves to be treated with the

greatest respect and care.⁴⁰⁸ Care of the elderly is thus becoming an ever more urgent issue that must addressed to prevent suffering for uncountable vulnerable members of society. Thus, tackling this problem requires a more realistic understanding of the demands on those caring for the dependent elderly, and attention to the cultivation of those qualities of mind and heart needed by caregivers. Above all, it requires a sustained commitment to the moral education of health care providers.