We have examined the underlying philosophy behind withdrawal of care, but some would argue that one misses the existential realities of families grappling with the decision of whether to withdraw care. A new study published in the latest edition of the Journal of Medical Ethics tries to capture just this.
The study, prepared by Celia and Jenny Kitzinger from the UK based Chronic Disorders of Consciousness Research Centre, provides empirical data on the attitudes of families towards withdrawal of end of life care. From the information collected the authors argue that families often desire to terminate the life of their loved one, but nevertheless are repelled by the thought of 'starving' him or him.
Kitzinger and Kitzinger interviewed over 51 individuals who had a relative with a severe brain injury that had rendered them unconscious or minimally conscious. Participants were given much time to tell their stories and the interviewers refrained from asking generic questions.
The authors found a number of trends:
The authors conclude the article by suggesting that 'other ways of bringing about death' such as 'terminal sedation' be offered to patients and (as proxy decision makers) their families.
One does wonder, considering the situation that the families find themselves in, whether they have sufficient opportunity and encouragement to attend counseling services. This is the flip side of what the authors recommend, but perhaps of equal or greater importance.