May 1st is Blogging Against Disablism Day around the blogosphere; if you follow the link, you’ll find the hundreds of posts about dozens of aspects of disablism – discrimination against disability.
I’ve recently been analyzing a research article with some students – “Patients’ quality of life: A comparison of patient and nurse perceptions” by Masoud Bahrami, Steve Parker, and Ian Blackman, published in Contemporary Nurse (2008). The notion of quality of life – and these research findings – having something to say about disablism.
The authors report that Quality of Life (QoL) “has been researched with different purposes in mind such as curative, palliative, improving symptom relief, … and for medical decision-making.“
That final, undefined phrase is chilling. What medical decisions need to be made based on the quality of a person’s life?
The answer? Whether or not this person will live: whether their life has sufficient quality to be worth continuing.
Quality of Life is invoked as a reason to allow assisted suicide for people with serious and chronic disabilities, or to cease to provide life-sustaining treatment to people who are not able to respond to their care-givers. It is also one of the primary reasons given when parents choose to abort their baby who has been diagnosed prenatally with Downs or another disability.
The argument is often made that people with chronic or long-term suffering should have the option to end that suffering by their own choice. Opponents of these choices point, in part, to the subtle dynamics often at work, especially the intense desire of most people not to “burden” others with their care or the cost of their care.
In some of these situations – especially those of the unborn child – the decision about the value or quality of the life to the person who would live it is made by people who are looking in from the outside, who are not the ones living the life. From the perspective of an able-bodied person, they imagine what it would be like to have that disability, and their thoughts are filled with fears:
- People would stare at me, or would look away
- I wouldn’t be able to do my job, socialize with my friends, stay up with my hobbies
- I would be in discomfort or pain much of the time
- It would be so much work just to be dressed, cleaned and fed every day
- I would be scorned, treated with disrespect, or ignored
- It would burden others so much
- It would cost so much
- I would be so miserable
- I don’t know how I could possibly do it
Such a life, some conclude, would simply not be worth living. Those people – notice the distancing – should have the option to end their life. And the parents should prevent this kind of suffering for their unborn child by ending her or his life now, in the abortion clinic.
The authors of this paper did an insightful study. They worked with cancer patients: some inpatients, some from a chemotherapy clinic, some undergoing radiation therapy. Patients varied widely in their disease severity and health status. They completed a questionnaire in which they rated the quality of their physical, emotional, social, and environmental life – and their overall quality of life.
The second part of the was simple: one or more nurses also completed the questionnaire – a nurse who was involved with the care of the patient enough to know her or him well completed. The nurse rated the quality of the patient’s life as she or he saw it.
Then the researchers compared the ratings given by the nurses with those of the patients themselves. The patients and the nurses were most likely to give similar ratings regarding the physical quality of life dimension. But even here, the relationship was only moderate, with about 25% of the variability in the way patients rated their quality of life reflected in their nurses’ ratings.
The nurses tended to rate the patients’ quality of life lower than the patients themselves rated it. With regard to the social dimension of quality of life, only 3% of the variability in patients’ rating of the quality of their lives in the social dimension was shared and recognized with the nurses.
In a world where decisions are made – too often – for people with disabilities, this is a sobering piece of research. Even those who have training in empathy, and who spend a significant amount of time with a patient, nonetheless have little ability to realize just how precious and important the life of their patients – even if limited – could be. Their lives had value for what they were in the present, not for the possibility of able-bodied life later.
This calls on the medical establishment, and people’s able-bodied friends and family members, to recognize the bias and flaws in their thinking – and to recognize that, for large numbers of people living with disabilities, life is worth living – and the quality of their lives is not a matter for “medical decision making.”
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