Ethics of Care

Critical Advances in International Perspective

Barnes, Marian, Brannelly, Tula

• Publisher: Policy Press
• Year: 2015
• ISBN:
  9781447323334
• Edition: 1
• Topic: Medicina
• Subtopic: Politica sanitaria

Over the last 20 years there has been a flourishing of work on feminist care ethics. This collection makes a unique contribution to this body of work. The international contributors demonstrate the significance of care ethics as a transformative way of thinking across diverse geographical, policy and interpersonal contexts. From Tronto's analysis of global responsibilities, to Fudge Schormans' re-imagining of care from the perspective of people with learning disabilities, chapters highlight the necessity of thinking about the ethics of care to achieve justice and well-being within policies and practice. This book will be essential reading for all those seeking such outcomes.

Section Two
Care ethics in practice

NINE

Exploring possibilities in telecare for ageing societies

Ingunn Moser and Hilde Thygesen

Introduction

A new focus on technology in health and care services is part of an international trend. The demographic changes implied by ageing populations, the growing chronicity of illness, together with rising expectations, lack of qualified labour and rising costs of public welfare are expected to pose challenges to public welfare systems. Policy responses to this impending ‘care crisis’ promote technology or ‘telecare’ as a solution that may at the same time reduce care needs and public expenditure and improve the quality of life of older people, by allowing them to receive the necessary support at home and to maintain their independence for as long as possible.

Critical engagements with these discourses note that there seems to be an underlying assumption that technology (for example GPS tracking technology, automatic alarms, detectors and medical monitoring devices) can replace the need for care and human relations and networks, and that this is seen to be desirable (Chaper One in this volume; see also Roberts and Mort, 2009; Mort et al, 2013). This policy is built on the assumption that people prefer to grow old in own their homes rather than living and being taken care of in institutions, and that technology will enable them to do so. These expectations of a ‘technological fix’ relate also to groups not previously considered as candidates for independent living, such as people with dementia.

From a care ethics perspective, the discourses of active ageing and independence and of a technological fix that replaces care needs and substitutes embodied , face-to-face, direct care with electronically mediated care at a distance seem to miss the point of care altogether. They contribute to the on-going individualisation of care (Chapter One in this volume) and also turn care issues into issues of individual risk management and security (Lopez, 2010). A central notion of care ethics, however, is the notion of the relational interdependence of people as caring subjects (Barnes, 2012a). According to Tronto (1993), people exist in and through caring relations with others. Care is constitutive of individual human being as well as of social and public life. People are relational entities, and so are their identities and subjective capacities. What characterises people is interdependence, rather than independence or dependence. Terms like relative or relational autonomy (MacKenzie and Stoljar, 2000) have been proposed to replace individualist notions of subjectivity, and autonomy and independence are analysed as relational achievements (Moser, 2006; 2011). On this basis, care ethics has delivered a powerful challenge to and critique of medical (principle) ethics and its ideal of individual, autonomous subjectivity (Verkerk, 1999). As Pols (2014) notes, it is hard to overestimate this achievement.

One could address the promotion of telecare development and its ideals in a similar way. Telecare discourse treats care first and foremost as expenditure, and care needs as a risk or even a threat to welfare budgets and future welfare systems. Much if not most telecare development is oriented towards reducing needs and the costs of care by teaching people to care and take responsibility for themselves, to manage their own risk profile and prevent their condition from deteriorating. On this basis, one could analyse policy and discourse, its philosophical and ideological frame, and reclaim the language and practice of care from telecare.

Policy and public discourse are important arenas when considering the shaping of future welfare provision, including the role of telecare. Even so, they are not the only relevant arenas. Policy and discourse do not tell the whole truth about telecare. In order to know what telecare is becoming, one has to take into account the everyday practices of caring relationships in people’s lives. Care is a relational, situated and embodied achievement in which people explore the right thing to do for themselves and their relationships (Williams, 2004a). Accordingly, what makes good care varies. It is not a given, but becomes translated and negotiated in the concrete settings, arrangements and collectives that constitute care practice (Mol, Moser and Pols, 2010; Thygesen and Moser, 2010; Willems and Pols, 2010). Ethics of care practice therefore need to start from within care practice.

This chapter begins from these central notions of care ethics and by appreciating that questions about what constitutes good care, including telecare, cannot be tackled theoretically and in isolation from the actual context of care. Attempting to explore and shed light upon the phenomenon of telecare, and how it shapes and transforms care practice as well as values and ideals in care, requires that one undertakes empirical research into the practice and the aims and reflections of the actors involved, including patients, family care givers and healthcare practitioners (Pols, 2012). On this basis, then, empirically grounded ethics of care practice may articulate what really happens as well as what is striven for and achieved in actual practice. This may also be compared with practices and ideals in other care contexts, or in arenas such as policy or technological innovation. It may also provide material for reflection and debate and argument and reasoning about the value and quality of current care practices, and provide suggestions and recommendations (Willems and Pols, 2010).

This type of empirical ethics of care practice does not shun normativity, but places it at centre stage. Indeed, the question of the value and quality of a practice, of what to do and what is the good and right thing to do at any one time, is at the very heart of a care collective, and is very much what binds and holds a care collective together. This type of empirical ethics thus treats care practice as inherently normative and as a form of ethics-in-practice, and sees empirical ethics as taking part in the same discourse and on the same level, in the middle of practice (Thygesen, 2009).

Accordingly, this chapter illustrates, analyses and describes how telecare, exemplified by use of GPS-based tracking technology in care for people with dementia, establishes a form of care at a distance, and what this implies for different actors in the care collective. It traces what they strive for, how they weigh and balance, different values and ideals, what is achieved and how, and what conditions are essential for this achievement. It asks how telecare affects and possibly transforms care practice, care values and ideals, and divisions of labour and the distribution and assignment of responsibility. Finally, it explores the challenges, limitations and limits involved. The arguments are based upon empirical data drawn from an EU-funded research project on ethical frameworks for telecare for elderly people living at home).¹ The research is based on analyses of policy documents, debates in citizens’ panels and ethnographical fieldwork and interviews about how these new caring solutions work in practice within formal healthcare services and in family care. For pedagogical reasons, we rely on excerpts from interviews and ethnographic field notes related to one single case. These excerpts, however, demonstrate and illustrate the more general lessons from EFORTT-project research (Roberts and Mort, 2009; Lopez, 2010; Mort et al, 2013).

Experimenting with telecare arrangements: affording valued positions, reciprocity and symmetry

Dementia is often described as the condition that exemplifies how illness strikes not only individual persons and patients, but whole families or care collectives. The following stories illustrate this. They are from an interview with a family carer who is talking about her husband’s condition and their experiences when using a GPS-based tracking technology.

“My husband was diagnosed with dementia five years ago. He has always gone for long walks, even after he became ill. The problems increased after a while. There were incidents when he got lost, and once he almost froze to death. Later, he turned the day around and started taking walks outside in the middle of the night. For a while I was out looking for him almost every night. It was a nightmare for both of us. I still had to get up for work every day! I dragged out my mattress, placed it in front of the entrance door and went to bed there in order to be able to prevent him from going out – only to find out that he had used the garden entrance instead. That’s when I bought myself this GPS. It was connected both to mine and our daughter’s mobile phone, and made it possible to find out where he was at all times. I have to admit it was like getting a new life for us both. Once again I was able to start exercising and join the choir. And my husband started to go out dancing, which he hadn’t done for many years”

The above excerpt shows a family struggling to handle life with dementia. It further shows family carers experimenting with various care arrangements, including telecare. They are exploring possibilities and solutions for themselves, their caring relationships and their everyday lives. They try this and they try that, constantly tinkering and seeking good and better arrangements (Mol, Moser and Pols, 2010; Thygesen and Moser, 2010). We will analyse what this good or ‘right thing’ is for each of the participants in the care relationship and care collective at stake.

Per Hansen (to safeguard anonymity, we have used a fictitious name) had always been an ‘outdoors’ man with an active life-style, and was still in a good physical shape. When he fell ill with dementia it was out of the question for his wife and family to refuse him his freedom to move about as he was used to. During the early phase of the illness he had problems with orientation, which created challenges related to his safety, and daily (and nightly!) search and rescue actions for his family. The introduction of a GPS unit, however, made it possible for them to continue to care for Per at home for three more years, rather than handing him over to care in a sheltered (and locked) ward in a nursing home.

In a first reading and interpretation, then, what the GPS unit did was to make it possible for Per Hansen to continue to claim and exercise his individual freedom and, as part of this, his self-determination, independence and capacity to take care of himself. But perhaps more important was the fact that the GPS unit allowed Per to continue leading the life he was used to and maintain activities that had been important in shaping his identity. It created continuity with his previous life. He could enjoy nature – a source of aesthetic value, and to many people also of spiritual value. He could also maintain social relationships and he took up an old hobby and passion: dancing.

These activities, made possible by the GPS unit, gave him access to positions and relations that were not dependency related but built on reciprocity and interdependence. By visiting an old female friend he could, for example, show compassion and care, not just receive it. Taking part in such activities allowed Per to maintain his identity and a subjective self not defined by and reduced to the dementia disease and dependency. As such, it contributed to an evening-out of power asymmetries, or at least to bringing in more symmetry to some situations and relations.

The GPS unit opened up and afforded new positions and identities for Per Hansen’s wife and family as well. It gave his wife and daughter the assurance of safety that they needed in order to maintain their work and financial responsibilities in addition to their caring responsibilities. Before the GPS unit came into their lives, Per’s wife spent hours both day and night looking for him. With the GPS technology, Per’s movements could be followed from a distance, and she could go out to fetch him home if it became too late, if he got exhausted or if he couldn’t find his way home. She was no longer constantly worn out, but could start exercising and attending choir practice again. She was no longer reduced to and fixed in a position as carer. In this way, the GPS unit ‘unfixed’ the dyadic positions of carer and care recipient in their relationship. So, in this case, bringing a new element into the care collective opened up valued positions and enabled some more symmetry and reciprocal interdependence for all involved.

Telecare comes with new demands and responsibilities

We have seen above the positive effect of telecare in affording a whole new life to a family care collective. But telecare also comes with new demands and responsibilities that may be challenging to take on.

“I had regular routines for charging the GPS. I was terrified to forget, so I charged it every evening, even though it wasn’t necessary. Afterwards, before going to bed, I attached it to the belt on his trousers, since he always put those on when he got up. In that way I knew he wouldn’t lose it. “[…] By using technical solutions, we transfer an additional responsibility. My responsibility was to ensure that the GPS unit was charged. If not, and it got discharged when he used it, it was my fault if something happened. It was also up to me to find a way to make sure he took it with him.”

Per’s wife is a healthcare professional, and sees the consequences and challenges implied by new technologies from the viewpoint of both the healthcare worker and the family carer. In this quote, she reflects on her responsibility as a family carer and the new tasks and solutions she has to carry out. As she says, the new caring solutions come with certain requirements: someone has to ensure that the unit is charged, that it is switched on, that it doesn’t get switched off if someone touches it, that it is not so cold that the batteries discharge while Per is outside, that the device is brought back and isn’t left on a tree stump during a break or removed from Per’s backpack. If these conditions are not present, the current arrangement will not work and the technology will not provide protection or security.

Per Hansen’s wife experimented with and tried out several creative solutions to ensure that things would work. She made routines for charging the GPS unit. After an incident where Per took the GPS unit out of his backpack or jacket pocket, she first tried putting the unit in a leather pouch attached to his keyring. Finally, her solution was to attach it to the belt of his trousers. In addition, she found a means of protecting the power button so as to prevent Per from switching the unit off by accident.

When the person with a particular need for care and for new care arrangements and solutions is living at home, he or she is the family’s responsibility. This is experienced as a demanding responsibility, one that does not surface in the telecare debates. Telecare also adds further demands and responsibilities, and not all families and relatives have the means to handle them. Many elderly relatives have little experience with new technology. When it comes to GPS, numerous solutions are available on the commercial market and it is no easy task for family carers to choose the best solution, operator or supplier unassisted.

Telecare creates new work and requires new skills and routines

When Per moved to the local nursing home after some years, it was uncertain whether he would be allowed to keep the GPS. The staff had no experience in this area and contacted the county governor for clarification. Fortunately, the county governor approved Per Hansen’s use of the GPS relatively quickly. Today Per still goes for long walks, generally every day, and now the staff at the nursing home monitor his location.

“Now I log in [to the PC] and track him around lunchtime to see where he is located and if he is on his way back. If I see there is a movement in the right direction, I wait for a while to see if he shows up by himself. A couple of times we have had to go out and get him. A while ago, for example, I discovered that he was in the same place when I checked again about half an hour later. Then I took my car and went to find him. Apparently he was quite exhausted, and had taken a break. But evidently he felt comfortable getting a ride back here.”

This quote is from an interview with the unit manager at the nursing home where Per Hansen is living. She is describing how they use and integrate the GPS unit, what the implications are and how the new tasks, responsibilities, skills and routines are handled. In this particular excerpt she describes how the staff log on to a computer or mobile phone to find out where Per is, and the discretionary judgements involved in deciding what to do. They check his position, and later on check which direction he is moving in. When they see his position on the screen they make several professional evaluations. Where is he, how far has he gone, how long has he been out, is he on his way back, what is his condition and is it necessary to go and get him? These are some of the questions the staff need to consider on the basis of the information on the computer screen. This is not a new task, but one that is performed in a different way and that requires new and different skills because the staff have to read and interpret Per’s condition in an electronically mediated way. The screen is a new instrument through which they have to learn to see and read their resident and patient’s condition – and the resident is not directly present, for instance to ask him questions.

In addition, those responsible for Per Hansen’s care make several other professional and discretionary evaluations on a daily basis. For example, they have to evaluate whether the weather is too cold for him to go out, despite having the GPS. And they have to evaluate traffic safety.

But there are also entirely new tasks: the GPS unit has to be charged, it must be put in the backpack or attached to his belt, someone has to check on his position and condition, and sometimes one of the staff has to drive out to bring Per Hansen home. There are also new administrative routines related to new technologies because they are subject to specific guidelines related to privacy regulations, for instance.

In the nursing home, clear definitions of both task performance and responsibility are required for the GPS unit. This is stipulated in more or less formal procedures. At Per’s nursing home the night nurse is responsible for charging the GPS unit each night. A ‘charging list’ has been posted on the wall in the guardroom and has to be signed each time. The primary daytime contact is responsible for ensuring that the GPS is switched on and that Per Hansen has it with him when he goes for a walk. The nursing home staff put the GPS unit in with his water bottle in the pouch that he carries around his waist and always takes with him. Per’s primary contact is also responsible for checking his position, monitoring him and evaluating his condition, and keeping track of him, either through the computer or by mobile phone, while he is out walking.

Weighing and balancing different values and ideals in care

“But I am terrified that it [the GPS] doesn’t work. It gets dark in two hours. And the message is sent. But I don’t know why his unit doesn’t answer. The batteries could be discharged. Or perhaps he has accidentally switched it off. Or there could be something wrong with the subscription.”

Again, Per Hansen’s wife is reflecting. She is speaking about the ‘technological risks’ involved in telecare, risks that cannot be separated from human or organisational risks. This is about delegating, and handing over the task and responsibility for direct clinical observation and monitoring of a patient’s condition to machines or technical instruments. Large segments of specialised healthcare now delegate and rely on machines for monitoring certain functions or parameters. In this sense, telecare builds on and extends practices that are familiar. Telecare has something else in common with specialised healthcare, and this is that machines and instruments often see and monitor conditions that are not so easily or directly accessible to traditional clinical observation. Their observations may penetrate more deeply into the person an...