A life worse than death?
A project by Matilda Svensson Chowdhury
Different cultural understanding of life and death are shaping institutional medicine and have a serious impact on the ways medical techniques are understood and acted upon. Today, medical technology is creating new dilemmas for both medical staff and patients.
This project is about vulnerability within health care, with a focus on how culturally shaped perceptions of disability and quality of life affects the difficult decisions about health, life and death that doctors and patients must do. Focus is on ALS, a neurodegenerative disease leading to death by suffocation. Since there is no pharmaceutical treatment that prolongs life significantly, the use of permanent mechanical ventilator is the only treatment that extends the patient’s survival.
Research has shown that there are significant differences in the distribution of permanent ventilators: more patients have access to this technology in Denmark than in Sweden, more men than women are treated and more patients are cared for in some Swedish counties than in others. The aim of this project is to analyze how Swedish and Danish physician’s take decisions regarding ventilator care.
Theoretically this study takes a point of departure in the new scholarly field of critical disability studies and crip theory.