Abstract
The question of withdrawing artificial nutrition and hydration from people in a permanent vegetative state sparks considerable ethical and legal debate. Therefore, understanding the elements that influence such a decision is crucial. However, exploring perceptions of artificial nutrition and hydration is methodologically challenging for several reasons. First, because of the emotional state of the professionals and family members, who are facing an extremely distressing situation; second, because this question mirrors representations linked to a deep-rooted fear of dying of hunger and thirst; and third, because of taboos surrounding death. We sought to determine the best method to explore such complex situations in depth. This article aims to assess the relevance of the photo-elicitation interview method to analyze the perceptions and attitudes of health professionals and families of people in a permanent vegetative state regarding artificial nutrition and hydration. The photo-elicitation interview method consists in inserting one or more photographs into a research interview. An original set of 60 photos was built using Google Images and participants were asked to choose photos (10 maximum) and talk about them. The situations of 32 patients were explored in 23 dedicated centers for people in permanent vegetative state across France. In total, 138 interviews were conducted with health professionals and family members. We found that the photo-elicitation interview method 1) was well accepted by the participants and allowed them to express their emotions constructively, 2) fostered narration, reflexivity and introspection, 3) offered a sufficient "unusual angle" to allow participants to go beyond stereotypes and habits of thinking, and 4) can be replicated in other research areas. The use of visual methods currently constitutes an expanding area of research and this study stressed that this is of special interest to enhance research among populations facing end-of-life and ethical issues.
Highlights
The progress in intensive care and resuscitation techniques in recent years has considerably increased the chances of survival after brain damage
How far the life sustaining treatment, including ANH, should be pursued? Some consider that indefinite survival in a persistent vegetative state (PVS) is of no benefit to the patient and that there is no moral or legal obligation to continue life-sustaining treatments, where some consider that ANH is a primary care that is due to all human beings, especially while they are in a situation of extreme vulnerability. [3, 4]
The 8 photos whose content was explicitly related to food or ANH represented 6.5% of the photos selected in the 138 interviews (Fig 1). Those photos were selected to talk about topics unrelated to artificial nutrition and hydration
Summary
The progress in intensive care and resuscitation techniques in recent years has considerably increased the chances of survival after brain damage. This has led to an increasing number of patients in a vegetative state who have awakened from coma, yet remain unresponsive. The chances of recovery become minimal beyond these time-frames For these persons, survival often only depends on artificial nutrition and hydration (ANH), and nursing care. Some consider that indefinite survival in a PVS is of no benefit to the patient and that there is no moral or legal obligation to continue life-sustaining treatments, where some consider that ANH is a primary care that is due to all human beings, especially while they are in a situation of extreme vulnerability. How far the life sustaining treatment, including ANH, should be pursued? Some consider that indefinite survival in a PVS is of no benefit to the patient and that there is no moral or legal obligation to continue life-sustaining treatments, where some consider that ANH is a primary care that is due to all human beings, especially while they are in a situation of extreme vulnerability. [3, 4]
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