Autonomy and dying: Notes about decision-making and "completed life" euthanasia in the Netherlands.

Euthanasia in the Netherlands is based on the notion that the person seeking assistance to die is able to make an autonomous decision. The objective of this study is to explore this notion, in particular, in the case of "tiredness of life." The article is mainly based on two qualitative researches and two selected case histories that provide an in-depth insight into the complex process of (not) reaching a clear decision. We found three obstacles that cast doubt over autonomous decision-making in the face of death: (1) Doctors - not patients - have the final say in "measuring" the "amount" of pain and suffering that entitles a person to be granted euthanasia. (2) Human decisions are always taken in a context of complex circumstances involving relatives, friends, and medical professionals. Decisions may therefore be changed, mitigated, or not taken at all. (3) People lose much of their autonomy when they grow old and fragile, and will be increasingly inclined or forced to leave decisions to others.

'Look under the sheets!' Fighting with the senses in relation to defecation and bodily care in hospitals and care institutions.

This essay focuses on sensory aspects of care in situations surrounding defecation in hospitals and other care institutions. Sensory activity does not merely encompass pleasant experiences that enhance healing and well-being. Anthropologists-and other disciplines as well-have paid little attention to unpleasant and disgusting experiences that our senses meet and that may rather increase pain and suffering in the context of care. Our essay therefore reflects on a common but highly uncomfortable aspect of being a-sometimes bedridden-patient: defecation. The sensory effects of human defecation are well known. They affect at least four of the five traditional senses. But equally repulsive are the social and emotional effects that defecation in a hospital context has on both patients and professional and other care providers. The essay is based on anthropological observations and the authors' personal experiences in Bangladesh, Ghana and the Netherlands and covers a wide variety of cultural and politicoeconomic conditions. It further draws on (scarce) scientific publications as well as on fictional sources. Extensive quotations from these various sources are presented to convey the lived sensorial experience of disgust and overcoming disgust more directly to the reader.

Divergent Views and Experiences Regarding 'Completed Life' and Euthanasia in the Netherlands.

A small proportion of older people in the Netherlands want to end their lives because they feel their lives to be 'completed' and no longer worth living. Currently, there is heated debate over whether or not these people should have the right to euthanasia. Drawing on previous research, we conduct a heuristic analysis of views and experiences of three different 'parties' involved in this debate, namely, the older people, their relatives and friends and medical professionals. The views of these three groups tend to be divergent and conflicting, posing a difficult dilemma to decision-makers.

Not-knowing and the proliferation of assumptions: local explanations of Cutaneous Leishmaniasis in Suriname.

Why do patients and others confronted with cutaneous leishmaniasis (CL) - a parasitic skin disease - in the hinterland of Suriname, South America, provide a dazzling variety of aetiological explanations for one single illness? And how do these explanations reflect local knowledge of and interest in the origin of illness? In this article, we explore these questions using the concept of 'not-knowing', as introduced by Murray Last in 1981. One of Last's conclusions is that 'don't knows' or 'don't cares' reflect people's disinterest in medicine. The aim of this article, however, is to draw attention to another aspect of not-knowing: it may lead to a proliferation of explanatory assumptions, unhindered by precise knowledge. In other words, multiple explanations mask not-knowing, which is from a methodological point of view a rarely observed element in social science research and constitutes an important addition to Murray Last's well known argument. The paper describes findings based on anthropological fieldwork carried out between September 2009 and December 2010 at the Dermatology Service in Suriname's capital Paramaribo and among 205 CL patients and 321 inhabitants in various communities in the hinterland. As this article shows, both knowing and not-knowing are rooted in the various contexts of people's daily lives and reflect their historical, socio-cultural, occupational, educational, biological, environmental, and public health-related conditions. Public health authorities should explore not-knowing more seriously in their efforts to prevent illness, since knowing about not-knowing is valuable in the design of health education and prevention programmes.

Why are the poor less covered in Ghana's national health insurance? A critical analysis of policy and practice.

BACKGROUND: The National Health Insurance Scheme (NHIS) was introduced in Ghana to ensure equity in healthcare access. Presently, some low and middle income countries including Ghana are using social health insurance schemes to reduce inequity in access to healthcare. In Ghana, the NHIS was introduced to address the problem of inequity in healthcare access in a period that was characterised by user-fee regimes. The premium is heavily subsidised and exemption provided for the poorest, yet studies reveal that they are least enrolled in the scheme. We used a multi-level perspective as conceptual and methodological tool to examine why the NHIS is not reaching the poor as envisaged. METHODS: Fifteen communities in the Central and Eastern Regions of Ghana were surveyed after implementing a 20 months intervention programme aimed at ensuring that community members have adequate knowledge of the NHIS' principles and benefits and improve enrollment and retention rates. Observation and in-depth interviews were used to gather information about the effects of the intervention in seven selected communities, health facilities and District Health Insurance Schemes in the Central Region. RESULTS: The results showed a distinct rise in the NHIS' enrollment among the general population but the poor were less covered. Of the 6790 individuals covered in the survey, less than half (40.3 %) of the population were currently insured in the NHIS and 22.4 % were previously insured. The poorest had the lowest enrollment rate: poorest 17.6 %, poor 31.3 %, rich 46.4 % and richest 44.4 % (p = 0.000). Previous enrollment rates were: poorest (15.4 %) and richest (23.8 %), (p = 0.000). Ironically, the poor's low enrollment was widely attributed to their poverty. The underlying structural cause, however, was policy makers' and implementers' lack of commitment to pursue NHIS' equity goal. CONCLUSION: Inequity in healthcare access persists because of the social and institutional environment in which the NHIS operates. There is a need to effectively engage stakeholders to develop interventions to ensure that the poor are included in the NHIS.

Wisdom and counselling: A note on advising people with HIV/AIDS in Ghana.

This article raises the question of whether the practice of HIV/AIDS counselling in Ghana can be linked to the wisdom that older people are said to have and use when they give advice to younger family members. Older people believe they have wisdom and life experience that young people should listen to; counsellors hold an opposite view about their work, insisting that it is they who listen to people with HIV/AIDS to help them make their own decisions. In actual practice, however, HIV/AIDS counsellors predominantly give information and advice, for at least three reasons. Firstly, clients urgently need a substantial amount of medical information about the causes and prevention of HIV in order to assess their situation and make decisions. Secondly, the traditional hierarchy between nurse and patient is difficult to reverse when the two meet during counselling. Thirdly, encouraging the client not to lose hope often takes the form of a pep-talk, which leaves little room for listening by the counsellor. This paper pleads for peer counselling, as a format that combines a relative equality between counselling partners with the authoritative knowledge of the counsellor. This article is based on anthropological fieldwork among older people in a rural community and counsellors in a hospital in the Kwahu region of southern Ghana.

How women in Bangladesh confront the stigma of childlessness: agency, resilience, and resistance.

In a context where motherhood is an integral part of a woman's stereotype, being childless is a devastating experience. We explore how these so-called deviant women manage this situation. The objective of this article is to contribute to the debate regarding infertile women's agency, resilience, and resistance. This article is based on anthropological fieldwork among urban middle-class and rural poor women. Their life histories reveal that childless women in Bangladesh, a pro-natalist, patriarchal society, are not passive victims, but rather actively fight their stigmatization and manage to survive. The childless women follow overt and covert strategies to overcome their stigmatized identity and create space for themselves in various innovative ways. The women do not resist in a coordinated way as a group, but do so individually. Given the collective nature of a society like rural Bangladesh, we believe that the women's individual acts will eventually have collective effects.

Community concepts of poverty: an application to premium exemptions in Ghana's National Health Insurance Scheme.

BACKGROUND: Poverty is multi dimensional. Beyond the quantitative and tangible issues related to inadequate income it also has equally important social, more intangible and difficult if not impossible to quantify dimensions. In 2009, we explored these social and relativist dimension of poverty in five communities in the South of Ghana with differing socio economic characteristics to inform the development and implementation of policies and programs to identify and target the poor for premium exemptions under Ghana's National Health Insurance Scheme. METHODS: We employed participatory wealth ranking (PWR) a qualitative tool for the exploration of community concepts, identification and ranking of households into socioeconomic groups. Key informants within the community ranked households into wealth categories after discussing in detail concepts and indicators of poverty. RESULTS: Community defined indicators of poverty covered themes related to type of employment, educational attainment of children, food availability, physical appearance, housing conditions, asset ownership, health seeking behavior, social exclusion and marginalization. The poverty indicators discussed shared commonalities but contrasted in the patterns of ranking per community. CONCLUSION: The in-depth nature of the PWR process precludes it from being used for identification of the poor on a large national scale in a program such as the NHIS. However, PWR can provide valuable qualitative input to enrich discussions, development and implementation of policies, programs and tools for large scale interventions and targeting of the poor for social welfare programs such as premium exemption for health care.

Understanding and improving communication and decision-making in palliative care for Turkish and Moroccan immigrants: a multiperspective study.

OBJECTIVE: The aim of this study is to explore how communication and decision-making in palliative care among Turkish and Moroccan patients is influenced by different styles of care management between Turkish and Moroccan families and Dutch professional care providers. Problems as well as solutions for these problems are highlighted. DESIGN: A qualitative design was used, totally interviewing 83 people (6 patients, 30 relatives and 47 care providers) covering 33 cases of incurable cancer patients receiving palliative care. Data were analysed thematically and contextually. RESULTS: The analysis reveals that problems in decision-making are partly related to differences in ethnic-cultural views on 'good care' at the end of life: Dutch palliative care providers prefer to focus on quality of life rather than on prolonging life, while Turkish and Moroccan families tend to insist on cure. Another barrier is caused by conflicting views on the role of the 'care management group': Dutch care providers see the patient as their primary discussion partner, while in Turkish and Moroccan families, relatives play a major part in the communication and decision-making. Moreover, the family's insistence on cure often leads to the inclusion of additional care providers in communication, thus complicating joint decision-making. CONCLUSION: Care providers need to understand that for Turkish and Moroccan patients, decision-making is seldom a matter of one-to-one communication. Next to acknowledging these patients' different cultural backgrounds, they must also recognise that the families of these patients often function as care management groups, with an 'equal' say in communication and decision-making. In addition, professionals should optimise communication within their own professional care management group.

Talking in triads: communication with Turkish and Moroccan immigrants in the palliative phase of cancer.

AIMS AND OBJECTIVES: To gain insight into the factors that influence communication between health professionals and Turkish and Moroccan immigrants in the palliative phase of cancer. BACKGROUND: In palliative care, communication is crucial. The question, however, is whether Dutch healthcare providers, on the one hand, and Turkish and Moroccan patients and their family members, on the other, agree on what is constituted by good communication. DESIGN: A descriptive qualitative method is used. METHODS: Data of semi-structured interviews with 83 persons (six patients, 30 relatives and 47 professional care providers) were analysed to determine perceptual communication differences about care and treatment during the palliative phase of 33 cases. RESULTS: As many patients with a Turkish or Moroccan background speak little Dutch, conversations often take place in triads, which makes it difficult for the actors to understand and resolve communication problems arising from diverging perceptions of 'good communication'. CONCLUSION: Miscommunication around palliative care cannot solely be explained by the different cultural backgrounds of patients and their care providers. The multilingual communication triangle of patient - family - care provider often also complicates the bridging of differences in care perceptions. RELEVANCE TO CLINICAL PRACTICE: Professional care providers should develop adequate strategies to handle triads, explore their own conventions and those of patients and relatives.

Alien origins: xenophilia and the rise of medical anthropology in the Netherlands.

The beginnings of medical anthropology in the Netherlands have a 'xenophile' character in two respects. First, those who started to call themselves medical anthropologists in the 1970s and 1980s were influenced and inspired not so much by anthropological colleagues, but by medical doctors working in tropical countries who had shown an interest in the role of culture during their medical work. Secondly, what was seen as medical anthropology in those early days almost always took place in 'foreign' countries and cultures. One can hardly overestimate the exoticist character of medical anthropology up to the 1980s. It was almost automatic for anthropologists to take an interest in medical issues occurring in another cultural setting, while overlooking the same issues at home. Medical anthropology 'at home' started only around 1990. At present, medical anthropology in the Netherlands is gradually overcoming its xenophile predilection.

'Palliative care': a contradiction in terms? A qualitative study of cancer patients with a Turkish or Moroccan background, their relatives and care providers.

BACKGROUND: Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging life is not an objective anymore when death nears. The question is, however, whether these perspectives on palliative care are congruent with the perspectives of immigrant families with a Turkish or Moroccan background. METHODS: A qualitative design was used as we were looking for the personal views of 'very ill' cancer patients with a Turkish or Moroccan background, their family members and their Dutch care providers. We interviewed 83 people, involved in 33 cases to obtain information about their views, values and norms on 'good care'. RESULTS: The main concerns about 'good care' expressed by Turkish and Moroccan families were: maximum treatment and curative care until the end of their lives, never having hope taken away, devoted care by their families, avoiding shameful situations, dying with a clear mind and being buried in their own country. Their views conflict, to some extent, with the dominant principles in palliative care, for example, the emphasis on quality of life and advanced care planning, which includes discussing diagnosis and prognosis with the patient. CONCLUSIONS: Patients and their families with a Turkish or Moroccan background often have different ideas about 'good care' than their Dutch care providers. As many of them are aiming at cure until the end of life, they find 'good palliative care' a contradiction in terms.

Factors That Influence Enrolment and Retention in Ghana' National Health Insurance Scheme.

BACKGROUND: The government of Ghana introduced the National Health Insurance Scheme (NHIS) in 2004 with the goal of achieving universal coverage within 5 years. Evidence, however, shows that expanding NHIS coverage and especially retaining members have remained a challenge. A multilevel perspective was employed as a conceptual framework and methodological tool to examine why enrolment and retention in the NHIS remains low. METHODS: A household survey was conducted after 20 months educational and promotional activities aimed at improving enrolment and retention rates in 15 communities in the Central and Eastern Regions (ERs) of Ghana. Observation, indepth interviews and informal conversations were used to collect qualitative data. Forty key informants (community members, health providers and district health insurance schemes' [DHISs] staff) purposely selected from two casestudy communities in the Central Region (CR) were interviewed. Several community members, health providers and DHISs' staff were also engaged in informal conversations in the other five communities in the region. Also, four staff of the Ministry of Health (MoH), Ghana Health Service (GHS) and National Health Insurance Authority (NHIA) were engaged in in-depth interviews. Descriptive statistics was used to analyse quantitative data. Qualitative data was analysed using thematic content analysis. RESULTS: The results show that factors that influence enrolment and retention in the NHIS are multi-dimensional and cut across all stakeholders. People enrolled and renewed their membership because of NHIS' benefits and health providers' positive behaviour. Barriers to enrolment and retention included: poverty, traditional risk-sharing arrangements influence people to enrol or renew their membership only when they need healthcare, dissatisfaction about health providers' behaviour and service delivery challenges. CONCLUSION: Given the multi-dimensional nature of barriers to enrolment and retention, we suggest that the NHIA should engage DHISs, health providers and other stakeholders to develop and implement intervention activities to eliminate corruption, shortage of drugs in health facilities and enforce the compulsory enrolment stated in the NHIS policy to move the scheme towards universal coverage.

How migrants keep Italian families Italian: badanti and the private care of older people.

PURPOSE: The purpose of this paper is to describe how migration affects the care of older people in Italy. DESIGN/METHODOLOGY/APPROACH: The paper is based on anthropological fieldwork by one of the authors. This consisted of in-depth interviews with 20 "badanti" (migrant caregivers), with relatives of older people and with social workers in the city of Verona, Italy. It further included extensive study of secondary materials on the topic of migrant care of older people. FINDINGS: Badanti, Italian families and older people find themselves locked in an uneasy contract: badanti because they are exploited and often unable to find better, formal employment; Italian families because they are aware that they fail to render their moral duty to their aged parents and grandparents; and older people because they feel neglected and maltreated by their children. Yet the three parties also rely on each other to make the best of a precarious situation. The relationship between badanti and Italian elderly highlights the contradictions within Italian politics on care and migration. This case study shows how migrants help Italian families to hold on to the tradition of family care for ageing parents. RESEARCH LIMITATIONS/IMPLICATIONS: The small sample of badanti and families provides a detailed and profound insight of the complexity of elder care in Italy but does not allow generalisation for developments in the country as a whole. PRACTICAL IMPLICATIONS: Policy makers should take notice of the indispensability of informal migrant care in present day Italy. ORIGINALITY/VALUE: The originality of the paper lies in the in-depth conversations with badanti and in the way in which elderly care is contextualised in the Italian tradition of care and present day politics.

Nuancing stigma through ethnography: the case of cutaneous leishmaniasis in Suriname.

Health-related stigma and its dramatic consequences for those stigmatized have long been a crucial concern for public health authorities globally. However, before concluding that stigma spoils the lives of people with a particular disease or disability and is a major obstacle to obtaining/providing adequate health care, it is necessary to first determine whether there is actual stigmatization related to the condition concerned. The purpose of this article is to nuance the concept of stigma through a detailed ethnographic exploration of the experiences and views of patients and others affected by the parasitic skin disease cutaneous leishmaniasis (CL) in Suriname, South America. Qualitative data on the perceptions, treatment and illness experiences of CL in Suriname was collected in 2009 and 2010 among 205 CL patients at the Dermatology Service in the capital city Paramaribo, and among 321 people in different rural hinterland villages. The exploration reveals the complex and sometimes confusing statements of patients and observers of social reactions to the disease. The authors conclude that--in contrast to other societies--CL is not generally a stigmatized disease in Suriname (though this is not to deny that stigmatization may occur occasionally). Over the past decades, the concepts of stigma and stigmatization have been abundantly theorized. But when theory drifts away from ethnographic evidence, it may turn into imprecise popular speech. In this article, we warn against inflation of the term stigma and show, through an in-depth qualitative description of reactions to symptoms of CL in Suriname, why negative reactions may not necessarily entail stigma.

Dying peacefully: considering good death and bad death in Kwahu-Tafo, Ghana.

People in Kwahu-Tafo, a rural town in Southern Ghana, regard a peaceful death as a 'good death'. 'Peaceful' refers to the dying person having finished all business and made peace with others before his/her death and implies being at peace with his/her own death. It further refers to the manner of dying: not by violence, an accident or a fearsome disease, not by foul means and without much pain. A good and peaceful death comes 'naturally' after a long and well-spent life. Such a death preferably takes place at home, which is the epitome of peacefulness, surrounded by children and grandchildren. Finally, a good death is a death which is accepted by the relatives. This 'definition' of good death--'bad death' is its opposite--does not imply, however, that it is a fixed category. The quality of one's death is liable to social and political manoeuvre and, therefore, inherently ambiguous. The good death of a very old and successful person can be decried by the younger generation as the death of a witch who managed to live long at the expense of young people who died prematurely. The article is based on anthropological fieldwork carried out intermittently from 1971 to the present day.