Issues Arising from Quality of Life

Cunningham-Burley, Dr. Sarah.  1998.  Issues Arising from Quality of Life. Seminar on Bioethics and Disabled people.
In her presentation, Dr. Sarah Cunningham-Burley, from the Department of Public Health, University of Edinburgh, looked at the way in which quality of life issues are affecting medical decisions, including decisions about genetic testing, and related this to a study of how the general public views these issues. Internet publication URL: www.independentliving.org/docs1/dpibethics3.html. In: Disabled Peoples' International (DPI). 1998. "Seminar on Bioethics and Disabled people." Internet publication URL: www.independentliving.org/docs1/dpibethics.html

 

Dr. Sarah Cunningham-Burley
Department of Public Health, University of Edinburgh

 


Dr. Cunningham-Burley's presentation looked at the way in which quality of life issues are affecting medical decisions, including decisions about genetic testing, and related this to a study of how the general public views these issues.


Public Involvement - Expert/Lay Divide

Experts see the opinion of the general public as 'uninformed'. However, we all have valid knowledge on a range of issues and public involvement can be a safeguard but not without other structural mechanisms in place.


Lay Expertise

Recent research has outlined this area of 'lay expertise'. Non professional experts were able to discuss complex issues in relation to the new genetics with astute understanding of the limits of genetic explanations, the tensions between individual and collective interests and the issues of responsibility, choice and control. An informed, inclusive public involvement in this area requires recognition of the importance and validity of such expertise and the need for supportive environments for the circulation of views and attitudes along with increased democratisation in decision-making in all areas of science. Without this we have only a professionally driven debate where scientists and clinicians, often acting with the best intentions, manage the social implications of the work through advisory committees etc.


Eugenics and Geneticisation of Disease

Dr. Cunningham-Burley stated that developments in molecular genetics open up questions, which should have been aired before i.e.. on Down's syndrome. Underlying this is a concern for quality of life and the value judgements inherent in this. The consensus is that the new genetics raises social and ethical issues because of the close association between genetics and eugenics. Promises of treatment leading to enhancement of quality of life are value laden and can have a negative outcome.


Quality of life

  • is both a vague and holistic multi-faceted concept which embraces a range of features reflecting our values and has different dimensions for different groups of people.
  • It can be conceptualised not only in physical terms, but also more holistically to include a social, psychological and possibly spiritual dimension.
  • as a cultural concept, it is very recent and has become individualised with rhetoric of freedom to choose one's own lifestyle.
  • within the health service the concept became operational because of the issue of resources and recognition of the impact of medical technology, measuring it through particular tools with their explicit or implicit value judgements. As such, quality of life can infiltrate health services decisions.


Quality of Life Measures were developed by health professionals and academics to avoid the inherent subjectivity of doctors when selecting patients for particular treatments i.e. kidney dialysis.


Core Domains of Quality of Life
(from 'The Missing Measurement in Health Care - Lesley Fallowfield)

  • Psychological: depression, anxiety, adjustment to illness
  • Social: personal and sexual relationships, engagement in social and leisure activities
  • Occupational: ability and desire to carry out paid employment, ability to cope with household duties
  • Physical: pain, mobility, sleep, appetite, nausea, sexual functioning.

These measures are worrying in that there is very limited recognition of the social domain which has been articulates almost entirely in individualistic terms. Little recognition has been given to the notion of how the wider environment affects quality of life.

Elsewhere the book is littered sith similar phrases where the underlying values prioritise health and physical functioning and where quality of life equates with not requiring assistance in a range of activities and skills. This is a very restricted view, measured at the level of the individual and must be challenged. Although there is debate about the validity of some standard measures of quality of life, they are still widely used.


QUALYS

  • health economists have developed the notion of Quality Adjusted Life Years (Qualys)
  • they measure a combination of mortality, morbidity and function - on a sliding scale from dead to healthy - plus the "quality" of life you have plus the increased time of survival resulting from a particular treatment.
  • these were developed on the basis of a study of just 70 people.
  • QUALYS and other measures have been developed because of resource issues.

 

Putting a monetary valuation on life using various decision theory models has been described as a "rational and efficient way of allocating the scarce available resources".

One outcome of this argument is to allow "cost effective" decisions to mask eugenics. If the rhetoric is changed, the question is whether it can ever be non-discriminatory.


Quality of Life and Genetics

Focus groups within the recent study addressed the issue of quality of life and attempted to discuss the social and cultural impact of the new genetics. The main concern was 'where to draw the line' below which everything is unacceptable? Opinions varied widely but the baseline excluded eugenics as practised in Nazi Germany or pre-natal testing and abortion on the grounds of trivial physical characteristics. There was concern about the development of tests where no treatment exists and perceived coercion to terminate pregnancies where abnormalities were diagnosed.

We probably cannot avoid dealing with the quality of life issue. We may not be able to draw a firm line on what is acceptable but we have to have social consensus on what is a reasonable way to behave.


Issues of Concern

  • the debate on the new genetics and re-shaping QUALYS must be engendered across all sectors of society. Disabled people must be involved in the debate. We are not treated as members of the public, so are excluded
  • how should developments in molecular genetics affect discussion on quality of life within our health service?
  • there is a danger of mixing quality of life with value for money. Why is quality of life assumed to be measurable at all? Important to make these assumptions explicit - what is meant by health and what is meant by life?
  • regulation of the new genetics is done through a variety of different bodies which involve people in different ways depending on their interests and most groups include only professionals. It is not just disabled people excluded from the debate.
  • we need to offer different ways to these groups and send a message to policy makers and professionals in order to overcome stereotyping
  • health care and genetics are driven by quality of life issues
  • the concept of quality of life is being used as a new excuse to discuss the right to life
  • we must collectively pressurise and contribute to public debate

 

continued...
The Global Picture and the European Situation Regarding Bioethics and Genetic Engineering, Degener

English