The Vitality of Disease – Quality of Life in the Making
28-29 June 2016
Rungstedgaard, Rungsted Strandvej 107, 2960 Rungsted Kyst, www.rungstedgaard.dk
Participants: Ayo Wahlberg (Project PI), Anna Mann (VITAL postdoc), Arseli Dokumaci (VITAL postdoc), Jieun Lee (VITAL postdoc), Natasja Kingod (PhD Candidate), Marie Svensson (PhD Candidate), Jiani Yang (2+3 PhD candidate), Cecilie Bønløkke (MSc student)
We are living in morbid times. With ageing populations, epidemiological transitions and advances in biomedicine, more people than ever before are living with (especially chronic) diseases across the world. While we should never forget that far too many people continue to die from treatable disease just as stark health inequalities are dramatically reflected in stratified life expectancies, it is nevertheless the case that millions of people around the world are living with a spectrum of diseases for months, years, if not decades. It is these kinds of morbid living that are the object of the VITAL project. In describing the lives of those who live with disease as morbid, the point is not to suggest that these lives need be gloomy or gruesome, indeed, what VITAL will show, increasingly the hope is quite the opposite. Instead the point is that millions of people’s lives are affected or characterized by disease (they are morbid) in profoundly intimate and social ways. Conversely, we can also say that there are certain kinds of living that are characteristic of particular diseases. This is what countless anthropological and sociological studies of how people (from around the world) cope, live with and navigate specific diseases have shown us, as scholars have generated insights into the travails and challenges of living with diabetes, cancer, dementia, kidney disease, HIV/AIDS, cystic fibrosis, rheumatoid arthritis, heart disease, skin conditions, not to mention various combinations of co-morbidities and more. Each individual is unique, just as her or his socio-economic circumstances are varied, yet when receiving a diagnosis and hopefully entering into treatment programmes, this individual and her or his loved ones are immediately thrust into a collectivizing (bio-)sociality of fellow ‘sufferers’; socialities that they may actively shun by rejecting disease identities, actively seek out and support in their efforts to learn how to live with their disease or simply not have the means or energy to engage with.
The VITAL project is based on a premise: qualitative knowledge of how patients live with their diseases is no longer somehow biomedicine’s subjugated ‘other’. Health care practices are increasingly being shaped by this knowledge, albeit in contexts that continue to be infused with biomedical expertise, language and treatment. The clearest symptom of this ‘rise’ of qualitative health knowledge has been the birth and proliferation of ‘quality of life’ as a therapeutic objective; it is no longer sufficient to save and prolong lives (however important this health objective remains throughout the world), today health care practitioners are increasingly called upon to improve these saved or prolonged, and often chronically morbid, lives. Concretely, we see this happening in at least the following four arenas which will be the foci of the four VITAL projects:
- Doctor-patient consultations and counselling where daily quality of life issues are enmeshed in discussions about prevention, treatment regimens, compliance and monitoring
- Patient education programmes where groups of patients are actively taught not only how to live with their disease but also coached and encouraged to ‘live positively’, ‘live well’ or ‘as best possible’ with their disease
- Clinical trials which use quality of life measures as clinical outcome benchmarks when testing the safety and efficacy of a new treatment
- The formation of patient associations which focus on the experiences and quality of life of their members (both patients and loved ones) while advocating for more attention to ‘their’ disease from researchers, health care practitioners and politicians
In different ways, each VITAL project will investigate how knowledges of living with disease intersect with practices of morbid living.
The goal of this meeting is to begin the collective brainstorming and planning that VITAL will require as we set out to empirically investigate how quality of life is made at knowledge-practice intersections in the various settings and countries we will be working in. The VITAL project consists of four ERC-funded projects carried out by the PI and 3 postdocs, and we will furthermore hear from Natasja Kingod, Marie Svensson, Cecilie Bønløkke and Jiani Yang. Between us we cover genetic disease, cancer, chronic kidney conditions, rheumatoid arthritis, dementia, diabetes, heart disease, psoriasis and HIV/AIDS in Denmark, Austria, United Kingdom, South Korea and China. As such, VITAL is perfectly positioned to generate comparative insights along three axes: a life course axis (from reproduction through children and families with chronic conditions, ‘adult’ diseases and dementia); a cross-cultural axis (with a specific Asia-Europe slant); and a socio-historical axis (each study will map out the ‘birth’ of quality of life as a therapeutic objective in our respective national settings).