Jeannette Pols

• PhD
• Professor (Full) at Academisch Medisch Centrum Universiteit van Amsterdam

Background The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous...

In recent decades, policy makers around the world have been working on implementing various technologies into healthcare, and the Covid19 pandemic fueled this process. The specialized technological solutions for telecare - the use of technologies for care at a distance - are often adopted by users in different ways than intended, or are abandoned i...

A participação na comunidade e a cidadania para os pacientes são ideais comuns que inspiram melhorias na assistência à saúde mental. Mas o que se entende por cidadania? Aqui é feita uma análise das práticas de banho, na enfermagem psiquiátrica, em instituições de saúde mental de longa permanência. São descritos quatro repertórios de banho, cada um...

Grande parte da teoria social sobre pessoas com deficiência ou doenças crônicas se afasta das práticas e teorias médicas. As pesquisas que se consideram relevantes para a promoção da autonomia de pessoas com deficiência se estruturam desta forma: oferecendo um contradiscurso às formas médicas, assumidas como individualizantes, opressoras e objetifi...

No debate sobre coerção em psiquiatria, cuidado e controle são muitas vezes justapostos. Neste artigo, argumentamos que essa dicotomia não é útil para descrever as formas mais complexas de inter-relacionamento existentes entre usuários de serviços, profissionais de saúde e o cenário de cuidado específico em uma equipe de saúde mental comunitária (E...

Este texto é uma tradução da Introdução do livro “Care in Practice: On Tinkering in Clinics, Homes and Farms”, editado por Annemarie Mol, Ingunn Moser e Jeannette Pols (2010). Tradução de Luísa Muccillo. Revisão de Ana Carolina Lessa Dantas.

ResumoEste artigo pretende incentivar que acadêmicos enviem trabalhos para um simpósio e para a próxima edição especial da Medische Antropologie, que tratará de estudos empíricos sobre questões normativas. Descrevemos a “virada empírica” na ética médica. A ética médica e a bioética em geral testemunharam um movimento da ética aplicada (a aplicação...

Embora as pessoas frequentemente se refiram à qualidade de vida e haja uma respeitável tradição de pesquisa para estabelecê-la, o significado do termo não é claro. Neste artigo, estudamos qualitativamente um procedimento médico cujos efeitos quantitativos são documentados como incertos. Fazemos isso para aprender mais sobre o significado do termo q...

Este artigo aborda a reforma contemporânea da educação médica de pós-graduação que visa padronizar o treinamento. As reformas são orientadas por intervenções de políticas públicas para aumentar a qualidade do atendimento, objetivar o desempenho e preparar os residentes para as mudanças nas necessidades de assistência médica. Este artigo se baseia e...

Ao declarar a Biomedicina como o seu contradiscurso apolítico, as teorias sociais, incluindo os estudos da deficiência, encontram problemas ao discutir os corpos e os seus padecimentos. Este artigo explora as possibilidades de “trazer os corpos de volta” de formas politicamente relevantes, ao mesmo tempo que evita reduzi-los a “dados” singulares e...

A "perspectiva do paciente" serve como uma ferramenta analítica para apresentar os pacientes como sujeitos com conhecimento na pesquisa, e não como objetos conhecidos pela medicina. Este artigo analisa os problemas encontrados com o conceito da perspectiva do paciente aplicado aos cuidados de saúde mental a longo prazo. Um problema é que "ter uma p...

This paper is the English translation and adaptation of my inaugural lecture in Amsterdam for the Chair Anthropology of Everyday Ethics in Health Care. I argue that the challenges in health care may look daunting and unsolvable in their scale and complexity, but that it helps to consider these problems in their specificity, while accepting that som...

Background The emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased...

Seeking to support qualitative researchers in the artful development of feminist care scholarship, our goal here is to ‘look back’ on how we have conceptualized the problems of care and developed research that illuminates the social organization of care in distinct ways. As part of a ‘feminist care scholar retrospective’, we present five condensed...

In the debate on coercion in psychiatry, care and control are often juxtaposed. In this article we argue that this dichotomy is not useful to describe the more complex ways service users, care professionals and the specific care setting interrelate in a community mental health team (CMHT). Using the ethnographic approach of empirical ethics, we con...

In this article, we conduct an empirical ethics approach to unravel the different perspectives on good care that are present in a community mental health team (CMHT) in Utrecht. With the deinstitutionalisation of mental health care, the importance of a close collaboration between the social and medical domains of care on the level of the local comm...

The response asks about the relationship between artist and audience in the RAAAF artworks. Is the artist an Autonomous Innovator who breaches the ties with the past and the environment? Or is the aesthetic practice located in the creation of relationships around these objects, hence expanding the artwork by using know-how, experiences and enthusia...

What was the impact of physical distancing on socially vulnerable groups needing care during the first COVID-19 pandemic lockdown in the Netherlands? We conducted repeated qualitative interviews with 141 people in care relationships and 106 professionals, and two repeated surveys among older populations outside ( n = 1697) and inside long-term care...

Background: Concerns are raised about missed, delayed and inappropriate diagnosis of Lyme Borreliosis. Quantitative descriptive studies have demonstrated non-adherence to the guidelines for testing for Lyme Borreliosis. Objectives: To gain insight into the diagnostic practices that general practitioners apply for Lyme Borreliosis, their motives for...

Deinstitutionalization is often described as an organizational shift of moving care from the psychiatric hospital towards the community. This paper analyses deinstitutionalization as a daily care practice by adopting an empirical ethics approach instead. Deinstitutionalization of mental healthcare is seen as an important way of improving the qualit...

Objectives: Prevention of cardiovascular disease (CVD) and dementia is a key health priority among older adults. Understanding individuals' attitudes to, the prevention of these conditions, particularly when delivered through novel eHealth tools, could help in designing effective prevention programmes. The aim of the study was to explore the attit...

This is an ethnographic study of decision-making concerning tube feeding in the acute phase after a severe stroke. It is based on 6 months of ethnographic research in three stroke units in the Netherlands, where the decision-making on life-sustaining treatment was studied in 16 cases of severe stroke patients. Data were collected through participan...

Ouderen die langdurig antihypertensiva gebruiken, voelen zich weinig betrokken bij deze behandeling. Ze vinden het moeilijk om met hun huisarts te praten over behoeften en voorkeuren. Huisartsen zouden het stilzwijgen moeten doorbreken en oudere patiënten moeten begeleiden in hun ambivalente gevoelens over langdurig gebruik van antihypertensiva.

Some notes I use in class for interview-training.

In the Netherlands, individual nursing homes as well as national policies have expressed the aspiration to make the nursing home more homely. In this chapter we discuss three ways in which home and institution emerge in the space of a nursing home. First, we illustrate how access, autonomy and control over space are negotiated. Second, we show how...

The chapter is based on stories from ethnographic fieldwork in family care practices at home, and in particular, from two cases of families caring for a family member with dementia: the Roberts family and the Cruz family. In the following, we present stories made from excerpts of fieldnotes, offer commentary and interpretations, and develop our lin...

Prevention enthusiasts show great optimism about the potential of health apps to modify peoples’ lifestyles through the tracking and quantification of behaviours and bodily signs. Critical sociologists warn for the disciplining effects of self‐tracking. In this paper we use an empirical ethics approach to study the characteristics and strivings of...

Objectives Sixty-five per cent of older people have hypertension, but little is known about their preferences and concerns regarding hypertension management. Guidelines on hypertension lack consensus on how to treat older people without previous cardiovascular disease (CVD). This asks for explicit consideration of patient preferences in decision ma...

Background: There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases. Advance care planning (ACP) is an integral part of this approach. As a systematically organized and ongoing communication process about patients' values, goals and preferences regarding medical care during...

Objectives: Global ageing is linked to an increased burden of cardiovascular disease and dementia, which calls for better prevention strategies. Self-management and eHealth applications are regarded as promising strategies to support prevention. The aim of this study was to explore nurses' best practices concerning behaviour change guidance for ca...

This series is a collection of stories that are written to ‘think with dementia’.

The concept of dignity is often used in palliative care, and, in particular, as a concept to illustrate what is important to those involved. However, philosophers, ethicists and laypersons cannot agree on what dignity actually is. In this paper, we analyse what caregivers told us about situations in which they thought dignity was at stake. From two...

Objectives To explore general practitioners’ (GPs) routines and considerations on (de)prescribing antihypertensive medication (AHM) in older patients, their judgement on usability of the current guideline and needs for future support. Design Semistructured interviews. Setting Dutch general practice. Participants Fifteen GPs were purposively samp...

Why expectations of telecare are often wrong An ethnographic study of a telecare device used by nurses in palliative care Telecare is increasingly applied in nursing care with the expectation that it will lead to valuable improvements in measurements, data collection, efficiency and communication options. However, science and technology studies ha...

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 pe...

This paper articulates dignity as relational engagement in concrete care situations. Dignity is often understood as an abstract principle that represents inherent worth of all human beings. In actual care practices, this principle has to be substantiated in order to gain meaning and inform care activities. We describe three exemplary substantiation...

A 57-year-old man developed a locked-in state due to a brain stem stroke. He communicated through eye movements. The team suggested treatment should be discontinued, as there was no perspective of improvement. The family was very upset because they experienced sufficient quality of life. We investigated what 'quality of life' means. The literature...

In the Netherlands, autonomy is a key ideal in visions of care for people with learning disabilities. This ideal can lead to tension when clients, in the opinion of their caregivers, overuse alcohol or drugs. In this article, we analyze how professional caregivers understand the ideal of autonomy in care for people with learning disability, and art...

Discussing the workings of technology in care as aesthetic rather than as ethical or epistemological interventions focusses on how technologies engage in and change relations between those involved. Such an aesthetic study opens up a repertoire to address values that are abundant in care, but are as yet hardly theorized. Kamphof studies the problem...

Mental health care is increasingly given at a distance, supported by technology. In this article, we focus on whether care, when technology comes in, still counts as good care. Therefore, we looked into a mental health nursing telecare practice for patients that live at home. The telecare team offers 24/7 unplanned webcam contact. We observed and i...

Biomedical innovation is often envisioned as a linear process, translating results of lab research into the clinic. The assumption is that deliberation with different concerned parties contributes to responsible innovation. Focusing on the case of Alzheimer diagnostics, Pols and M’charek demonstrate that innovations do not emerge in a linear way. P...

Although people often refer to quality of life and there is a respectable research tradition to establish it, the meaning of the term is unclear. In this article we qualitatively study an intervention of which the quantitative effects are documented as indecisive. We do this in order to learn more about what the meaning of the term quality of life...

This article is a written version of the lecture for the IPONS conference in Stockholm. The article starts from the claim that there is no such thing as technology, only different variations of technologies. These technologies, plural, all have their specific workings that we can only learn about by studying these empirically, by analysing the rela...

Background: GPs play an important role in recognising the symptoms of dementia; however, little is known about how they perceive their actual and future role in diagnosing dementia. Aim: To explore Dutch GPs' perceptions of their current position in diagnosing dementia, their reasons for referral to secondary care, and views on the future diagno...

Background Breaking bad news should be fine-tuned to the individual patient, contain intelligible information, include emotional support and offer a tailor-made treatment plan. To achieve this goal in motor neuron disease (MND), neurologists of the amyotrophic lateral sclerosis (ALS) centre Amsterdam deliver the message on 2 separate visits within...

'Citizenship' is a term from political theory. The term has moved from the relation between the individual and the state towards addressing the position of 'others' in society. Here, I am concerned with people with long term mental health problems. I explore the possibilities of ethnographically studying this rather more cultural understanding of c...

In this paper, we empirically analyse the role of experience and its relation to knowledge by working through a case study of a website for people with incontinence. The term “knowledge by experience” may be confusing if experience is framed as “situations someone has lived through” which then come to function as the foundation for experiential kno...

This paper addresses contemporary reform in postgraduate medical education that aims to standardise training. The reforms are guided by public policy interventions to increase quality of care, objectify performance, and to prepare residents for changing health care needs. This paper draws on an ethnographic study in the Netherlands, studying how ne...

The increasing use of telecare will profoundly change nursing care. How to understand these changes is, however, far from clear. This is because (i) studies on telecare seldom consider the situation it replaces, and (ii) current concepts and methods used to study the impact of telecare may not allow us to fully grasp these changes. We suggest that...

Numerous discourses on “good aging” provide different perspectives on what older people are, what they can and ought to do, and where they should be. Policy texts often present such discourses together, as if they were aligned. In our study, we found that that these two discourses sometimes also clash under the current, concrete strategies that hav...

In what way is »care« a matter of »tinkering«? Rather than presenting care as a (preferably »warm«) relation between human beings, the various contributions to the volume give the material world (usually cast as »cold«) a prominent place in their analysis. Thus, this book does not continue to oppose care and technology, but contributes to rethinkin...

Cardiovascular prevention programmes are increasingly being offered to older people. To achieve the proposed benefits, adherence is crucial. Understanding the reasons for adherence and non-adherence can improve preventive care. To gain insight into what motivates older people living in the community to partake in a cardiovascular prevention program...

This paper describes the approach of empirical ethics, a form of ethics that integrates non-positivist ethnographic empirical research and philosophy. Empirical ethics as it is discussed here builds on the 'empirical turn' in epistemology. It radicalizes the relational approach that care ethics introduced to think about care between people by drawi...

When critically ill neurologic patients are cognitively incapacitated, decisions about treatment options are delegated to surrogates, usually family members. We conducted qualitative interviews with 20 Dutch neurologists and residents in neurology varying in age, work experience, and workplace to investigate how they involve their patients' family...

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...

The GP's role in cancer care is changing and will become increasingly important. One of the challenges for GPs in caring for cancer patients is their lack of specialized knowledge and the impossibility to keep up to date with developments in the field of oncology. We investigated GPs use of knowledge in the case of the increasing use of oral antica...

ContextTelecare 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. Objective To develop an ethical framework for telecare sy...

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...

Deinstitutionalisation has not only made the social inclusion of clients a key objective in long-term mental healthcare, it may also affect the role of the care professional. This article investigates whether the social inclusion objective clashes with other long-standing professional values, specifically when clients give gifts to care professiona...

There are roughly two meanings attached to the concept of dignity: humanitas and dignitas. Humanitas refers to ethical and juridical notions of equality, autonomy and freedom. Much less understood is the meaning of dignitas, which this paper develops as peoples' engagement with aesthetic values and genres, and hence with differences between people....

The emancipation of patients, their organisation and their participation in medical research and health care policy has expanded tremendously. With these successful attempts at participation, however, there is one problem that has so far hardly been articulated and seems to be unrecognized in conceptions of the Patient 2.0 as an informed and active...

The emancipation of patients, their organisation and their participation in medical research and health care policy has expanded tremendously. With these successful attempts at participation, however, there is one problem that has so far hardly been articulated and seems to be unrecognized in conceptions of the Patient 2.0 as an informed and active...

Often the switch to telecare technology used to help caretakers provide treatment to their patients off-site is portrayed as either a nightmare scenario or a much needed panacea for all our healthcare woes. This widely researched study probes what happens when technologies are used to provide healthcare at a distance. Drawing on ethnographic studie...

Moet het respecteren van de leefstijl van een bewoner altijd voorop staan? Of kunnen er ook omstandigheden zijn waarin het beter is daarvan af te wijken – omdat de betreffende persoon daar baat bij heeft? Dit dilemma staat centraal in de derde aflevering van de serie ‘De Kwestie’.

Chocolademelk voor een bezoekend familielid halen of niet, dat is toch geen morele kwestie die het verdient in een Moreel Beraad besproken te worden? Gaandeweg blijkt echter dat er meer aan de hand is voor het team en dat de kwestie van de chocolademelk voor allerlei andere irritaties staat.

Politici promoten telezorg als de meest efficiënte oplossing van het probleem van de vergrijzing en ontgroening. Met behulp van telezorg, zo beweren ze, gaan chronisch zieke ouderen ‘zichzelf managen’ en zullen er minder professionals nodig zijn. Aan de andere kant stellen technologie-pessimisten dat er een verschraling en verkilling in de zorg zal...

Moreel Beraad is een gespreksmethode om in teamverband te reflecteren op ethische dilemma's die zich voordoen in het dagelijks werk. In de serie ‘De Kwestie’ wordt de werkwijze van Moreel Beraad geïllustreerd aan de hand van een aantal voorbeelden uit de praktijk. ‘Uit deze casus blijkt hoezeer een enkele vraag over een asbak te maken kan hebben me...

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 o...

Moreel Beraad is een gespreksmethode om in teamverband te reflecteren op ethische dilemma's die zich voordoen in het dagelijks werk. In een eerder nummer (2010/6) besteedde DENKBEELD al aandacht aan het hoe en waarom van deze methode. Een aantal voorbeelden uit de praktijk zal aan de orde komen in de nieuwe serie ‘De Kwestie’.

Telecare is advocated in most European countries with great, if not grandiose, promises: improving healthcare, lowering costs, solving workforce shortage. This paper does not so much question these specific promises, but rather the 'register of promising' as such, by comparing the promises with actual processes of incorporating technologies in heal...

In what way is "care" a matter of "tinkering"? Rather than presenting care as a (preferably "warm") relation between human beings, the various contributions to the volume give the material world (usually cast as "cold") a prominent place in their analysis. Thus, this book does not continue to oppose care and technology, but contributes to rethinkin...

In what way is »care« a matter of »tinkering«? Rather than presenting care as a (preferably »warm«) relation between human beings, the various contributions to the volume give the material world (usually cast as »cold«) a prominent place in their analysis. Thus, this book does not continue to oppose care and technology, but contributes to rethinkin...

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 wh...

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...

For some time now, Dutch mental healthcare has framed its ideals regarding the societal position of its clients in terms of ‘citizenship’. Different definitions of citizenship exist, which would entail different practical goals for one and the same context. In mental healthcare, however, a concept of citizenship is used without discussing its defin...

Stelt u zich voor: het verpleeghuis waar u werkt, gaat verhuizen naar nieuwbouw. Wat een uitgelezen mogelijkheid om gebruik te maken van de modernste technische snufjes! Maar wil zoiets succes hebben, zo is de ervaring in verpleeghuis Overspaarne, dan moet dat gebeuren met een flinke dosis gezond verstand en een duidelijke zorgvisie. DENKBEELD-reda...

Habraken JM, Pols J, Bindels PJE, Willems DL. Het zwijgen van patiënten in het eindstadium van COPD. Huisarts Wet 2009;52(11):527-32. Doel Patiënten in het eindstadium van COPD ervaren een slechte kwaliteit van leven en aanzienlijke problemen in hun dagelijks leven. Desondanks vragen ze niet actief om hulp. Ze krijgen daardoor niet de hulp die ze n...

Technologie zal de zorg gaan verbeteren. Dat krijgen we nogal eens te horen tegenwoordig, vaak in juichende bewoordingen. De belofte is dan dat we vrijer zullen worden, gezonder. En de zorg efficiënter. Maar er klinken ook sombere stemmen: technologie zal vooral onze privacy aantasten, menselijk contact in de weg staan en ons op kosten jagen. Wat i...

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 u...

‘Warm care’ is often contrasted with ‘cold technology’. But is this a meaningful opposition? Much research into healthcare technology frames the relation between humans and their technologies as purely rational and instrumental, where technologies are functional means to a human end. Other studies, however, foreground how technologies and users (re...

De modernste manier om zorgverleners te dwingen hun zaken op orde te krijgen zijn de zogeheten ‘kwaliteitslijstjes’. Ook de ouderenzorg moest eraan geloven. Welke instelling doet het goed, wie zit in de middenmoot en wie bungelt onderaan: de Volkkrant zette de beschikbare cijfers op een rij en maakte er een keurige ranglijst van. Maar gaan ze nu ec...

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. To gain insight into why patients with end-stage COPD tend not to express a wish for help. Prospective quali...

Regelmatig wegen en een prettige sfeer rond de maaltijden zijn belangrijke factoren om ondervoeding te voorkomen en te verminderen. Dit blijkt uit de resultaten van het verbetertraject Eten en Drinken van Zorg voor Beter. In het kader van dit project werkten zestig verpleeg- en verzorgingshuizen aan een betere kwaliteit van zorg door de ambiance ro...

De kenniskring Transities in Zorg van de Hogeschool Rotterdam heeft in samenwerking met het Van Kleef Instituut onderzoek gedaan naar casemanagement bij dementie. Het onderzoeksrapport gaat uitgebreid in op de ervaringen van elf thuiswonende ouderen met dementie en hun mantelzorgers. Hoe beleven zij de veranderingen die zij doormaken en de hulp en...

In discussies over het gebruik van technologie in de zorg voor ouderen bestaan nogal wat misverstanden. Zo is er de angst dat technologie in de plaats komt van liefdevolle, warm-menselijke zorg. Kille camera’s en scanners vervangen de liefdevolle blik van de verzorgenden, speakers in de wand komen in de plaats voor de geruststellende stem van de ma...