Jeannette Pols

The silence of patients with end-stage COPD: a qualitative study

BACKGROUND Patients with end-stage chronic obstructive pulmonary disease (COPD) experience poor quality of life and considerable problems in daily life. However, as they often do not actively express a wish for help, they do not get the help they need. AIM To gain insight into why patients with end-stage COPD tend not to express a wish for help. DESIGN OF STUDY Prospective qualitative study with semi-structured interviews. SETTING Outpatient clinics of four hospitals and one centre specialising in asthma and COPD in the Netherlands. METHOD Sixteen semi-structured interviews were conducted with 11 patients with end-stage COPD. RESULTS To express a wish for help, patients should regard their limitations as abnormal and should realise that there are possibilities to improve their situation. However, this was not the case with the patients interviewed. They appeared to consider themselves ill at a time of acute exacerbation of their illness, but regarded their everyday life as normal. In addition, patients lived with the assumption that, as their lungs were damaged beyond repair, they could not get help. CONCLUSION Patients with end-stage COPD do not actively express a wish for help because they do not consider their limitations to be abnormal and because they do not realise that there are possibilities to improve their situation. These results suggest that care in this stage of the disease should focus on improving daily life instead of just aiming to improve the functioning of the lungs. Professionals in health care should actively explore what kind of practical help these patients might welcome in keeping up their daily activities. Future research should focus on studying whether such an approach applies to the needs of patients with end-stage COPD.

Enacting appreciations: beyond the patient perspective

The “patient perspective” serves as an analytical tool to present patients as knowing subjects in research, rather than as objects known by medicine. This paper analyses problems encountered with the concept of the patient perspective as applied to long-term mental health care. One problem is that “having a perspective” requires a perception of oneself as an individual and the ability to represent one’s individual situation in language; this excludes from research patients who do not express themselves verbally. Another problem is that the idea of “talk” as a representation of the world ignores the fact that talk is also performative in the world: it requires, at least, the ability to deal with an interview situation. To think up alternative ways of including patients as subjects in research, I develop an approach that takes this performativity as a starting point. Analysing practical situations and activities, I argue that patients enact appreciations, making known what they like or dislike by verbal or non-verbal means in a given material environment, in situations that are co-produced by others. Thus, subjectivity is linked to situations and interactions, rather than just to individual characteristics; to “patient positions,” rather than “patient perspectives.”

Knowing Patients: Turning Patient Knowledge into Science

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives (patient knowledge) and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different from or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices (how patients know) and the collection and making accessible of techniques (what patients know).

Ethical implications of home telecare for older people: a framework derived from a multisited participative study

Telecare and telehealth developments have recently attracted much attention in research and service development contexts, where their evaluation has predominantly concerned effectiveness and efficiency. Their social and ethical implications, in contrast, have received little scrutiny.

The Heart of the Matter. About Good Nursing and Telecare

Nurses and ethicists worry that the implementation of care at a distance or telecare will impoverish patient care by taking out ‘the heart’ of the clinical work. This means that telecare is feared to induce the neglect of patients, and to possibly hinder the development of a personal relation between nurse and patient. This study aims to analyse whether these worries are warranted by analysing Dutch care practices using telemonitoring in care for chronic patients in the Netherlands. How do clinical practices of nursing change when telecare devices are introduced and what this means for notions and norms of good nursing? The paper concludes that at this point the practices studied do not warrant the fear of negligence and compromised relations. Quite the contrary; in the practices studied, telecare lead to more frequent and more specialised contacts between nurses and patients. The paper concludes by reflecting on the ethical implications of these changes.

Accounting and washing - Good care in long-term psychiatry

This article analyzes how the recent call for accounting in health care interferes with daily care practice and raises the question of how accounting practices relate to the aim of good care. The most influential accounting methods in the Netherlands suggest ways for professionals to legitimize their activities. The analysis of washing patients in long-term mental health care shows that different styles of accounting evaluate and legitimize care while structuring notions of what good care is. A specific style of accounting enforces certain values but does not tell about the tragic or unexpected effects that come with it, nor does it provide a repertoire to deal with these. Thus, care practices incorporating specific styles of accounting remain dependent on forms of care that are not accountable or ask for new forms of reflexivity.

Wonderful Webcams: About Active Gazes and Invisible Technologies

How do technologies such as webcams influence health care and what concepts may describe this? This article explores the literature and analyses what people looking through webcams do within a particular health care practice in the Netherlands, that is, within the rehabilitation of people suffering from severe chronic obstructive pulmonary disease (COPD) or asthma. Several ways to describe the activities webcams support and perform are identified. The webcam is (1) concentrating the activities of its users, by making them focus on the task at hand and (2) magnifies the characteristics of the already existing relationships between webcam users by imposing a relational distance that fits best with intimate contacts. (3) Although webcams shift notions of space and distance, their working appears to be related, to a great extent, to their location.

Breathtaking practicalities: a politics of embodied patient positions

By declaring biomedicine as its apolitical counter-discourse, social theory, including disability studies, experiences problems discussing bodies and their ailments. This paper explores possibilities to ‘bring bodies back in’ in politically relevant ways, while avoiding reducing bodies to singular, natural ‘givens’. This is done by exploring some of the practices in which people with severe Chronic Obstructive Pulmonary Disease (COPD) attempt to live with their chronic disease and together with others. It becomes clear that what they experience as important physico-social problems are the invisibility of their disease, combined with the visibility of the aids used to deal with its problems. This combination leads to behaviour that is incomprehensible to others. It is demonstrated that some form of presence of the disease is needed to create social positions that allow patients to live with others in an acceptable way. The paper continues by exploring ways in which bodies are made present in useful ways. T...

Washing the patient: dignity and aesthetic values in nursing care

Dignity is a fundamental concept, but its meaning is not clear. This paper attempts to clarify the term by analysing and reconnecting two meanings of dignity: humanitas and dignitas. Humanitas refers to citizen values that protect individuals as equal to one another. Dignitas refers to aesthetic values embedded in genres of sociality that relate to differences between people. The paper explores these values by way of an empirical ethical analysis of practices of washing psychiatric patients in nursing care. Nurses legitimate the washing of reluctant patients with reference to dignity. The analysis shows the intertwinement of humanitas and dignitas that gives dignity its fundamental meaning.

Understanding Palliative Cancer Chemotherapy: About Shared Decisions and Shared Trajectories

Most models of patient-physician communication take decision-making as a central concept. However, we found that often the treatment course of metastatic cancer patients is not easy to describe in straightforward terms used in decision-making models but is instead frequently more erratic. Our aim was to analyse these processes as trajectories. We used a longitudinal case study of 13 patients with metastatic colorectal and pancreatic cancer for whom palliative chemotherapy was a treatment option, and analysed 65 semi-structured interviews. We analysed three characteristics of the treatment course that contributed to the ‘erraticness’ of the course: (1) The treatment (with or without chemotherapy) contained many options; (2) these options were not stable entities to be decided upon, but changed identity over the course of treatment, and (3) contrary to the closure (option X means no option Y, Z, etc.) a decision implies, the treatment course was a continuous process in which options instead remained open. When the treatment course is characterised by these many and changeable options that do not result in closure, the shared decision-making model should take these into account. More attention needs to be paid to the erratic character of the process in which the doctor has to provide continuous information that is related to the changing situation of the patient; also, flexibility in dealing with protocols is warranted, as is vigilance about the overall direction of the process.