‘Why frailty needs vulnerability- A care ethicial study into the lived experiences of older hospital patients’ at the University of Tilburg in the Netherlands. On May 6th, 2015, Hanneke van der Meide presented her thesis. This study was conducted in the framework of a strategic program called ‘Professional Loving Care’. This program was a collaboration between the research group of Ethics of Care of Tilburg University and the St. Elisabeth Hospital in Tilburg. This program ran from 2009 to 2014 and aimed to discover, give shape, and study ‘Professional Loving Care’ in a general hospital. The program was named after a book by the Dutch care ethicist Annelies van Heijst (2011).
Ethicsofcare.org spoke with Hanneke van der Meide and asked her a few questions about her thesis.
1. You have an interesting title for your thesis, can you explain what you mean by this?
The main heading ‘Why frailty needs vulnerability’ covers the key message of my thesis. The vulnerability of older people and older hospital patients in particular is increasingly understood in physical terms, motivated by the alarming numbers that 30-60% of older patients develop new dependencies in activities of daily living during their hospital stay.
The concept of frailty is seen as a promising concept in the quest to a better understanding of physical vulnerability and plays a dominant role in research and care practice. Even though there is no full agreement yet on a definition, frailty usually refers to a physical condition related to ageing and is characterized by an increased risk of disease, decline, dependence and loss. My thesis is motivated by the idea that the concept of frailty, while often useful, limits the view of both the older patient and care. Given the focus on physical qualities, the dominance of frailty may lead to a serious lack of attention to social and existential concerns in hospital practice. Frailty is a view of vulnerability defined by others, such as geriatricians and researchers and it excludes the voices (the lived experiences) of older patients themselves. In my study I approach the vulnerability of older hospital patients as a lived experience rather than a physical quality. This starting point leads to different research questions and a particular research method.
2. Your study was a phenomenological inquiry and your research method was shadowing, could you tell something more about this method? And why this method is valuable to study the lived experiences of older hospital patients?
Shadowing is a particular observation technique which is mainly known in management and organisation studies. With shadowing the researcher (shadower) observes an individual (shadowee) during a relatively long time. It is a fruitful method to study everyday experiences and practices and it may provide a more holistic understanding than traditional interviews in which respondents provide merely answers to questions asked. Shadowing has some characteristics that make it notable suited for care ethical research.
- Context and duration. Through shadowing the lived experiences are researched in the context in which they take place. Data are not just a snapshot of critical incidents but give a broader picture of the situation.
- Bodily awareness. Shadowing gives a more central role to bodily expressions and may provide first-hand data on mundane and the taken-for-granted experiences. It also acknowledges the importance of embodied understanding in the researcher.
- The researcher as facilitator. The researcher acts as an intermediate who can make the often soft and faltering voice of the shadowee sounding louder.
- Power sensitive. Shadowing is suitable to study social relations and the positions people take or have been assigned.
Shadowing is a valuable method to study the lived experiences of older patients because of the aforementioned characteristics and because it allowed me to include people in the study with less cognitive capacities and those who, for whatever reason, had difficulties with verbally expressing their experiences within a given time.
3. One of your main findings is that the essential meaning of hospitalization for older patients can be described as feeling an outsider left in uncertainty. Can you elaborate on this finding?
The term ‘outsider’ describes the feeling of not fitting in and not belonging to. Older people do not feel comfortable in the hospital, they do not feel involved in their own course of action and they do not feel recognized as a person for whom the situation carries meaning. The word ‘left’ reveals how hospitalization is experienced as a solitary struggle with various uncertainties that are related both to the hospital environment, to the body, and to the social self. Chapter 3 and 4 of my thesis provide various examples of these experiences.
4. The findings in the phenomenological study are reconsidered from a care ethical perspective in order to contribute to morally informed reflection. Could you explain how the perspective of vulnerability is vital for thinking about good care in care practices?
Looking from a vulnerability perspective to the older patients means first of all that we start from another position. We are all potential vulnerable because we are embodied beings, relational in nature and emotionally attached to others. This does not deny that most of the older hospitalized people are in particular vulnerable. However, their vulnerability should not only be viewed as an individual quality related to their physical body but also as emerging in the relationships they are situated in as well as the institutional context. Whereas a frailty perspective calls for what Kari Martinsen (2006) describes as a ‘recording eye’ of the healthcare professional, a vulnerability perspective requires a ‘perceiving’ way of looking at the situation. The first is looking for and abstracting common characteristics to organize and classify them, the latter refers to an open way of seeing in which the other is gradually allowed to emerge and that allows for discovering what is at stake for the older patient. Knowing what is at the foreground for a particular patient is essential for good care.
5. In your thesis you refer to Joan Tronto and you use her theoretical notion of equal standing. Could you explain what Tronto means by this and illustrate how this notion is examined and defined in your study? And finally, how could the findings in your study be of value for politics and policy?
Democratic life assumes that all citizens are equal. However, Tronto shows that equality may have different meanings. It can refer to equality of opportunity or equality of outcome. The first can be established by rights, the latter requires more and should be thought of as the condition of equal voice. Indeed, although people may have the equal opportunity to have a say in the process, different circumstances may prevent them to actually take that opportunity. Chapter 5 of my thesis presents a case study of a client council in the hospital. The client council can be seen as an organized countervailing power to promote equality between the hospital administration and patient representatives. It could be an important medium to represent the interests of older patients.
However, the empirical findings show that the client council of the hospital has an equal position according to the law but that in practice there is a limited equality that seems only be granted under certain conditions. Equality seems associated and misunderstood as sameness implying that people only are treated as equal when they resemble the powerful. In a practice where equality is understood as sameness there is little room for differences. The study shows that the client council acts as a partner of the hospital board and that there is little room for everyday patient perspectives. It believe that it is important to give the theoretical notions of equal standing and equal voice in combination with listening in more attention in (research of) patient participation practices. With ‘listening in’ I mean being sensitive to others’ concerns and providing room so that these concerns can be shown by the other. Merely rights are often not sufficient to establish equality in practice.