Families are ambivalent and torn when contemplating the withdrawing life sustaining treatment.
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:
1) Families generally concluded that the individual would rather be dead only after they had exhausted all possibilities of bringing the individual back to a fully conscious state.
2) Following on from this, it was evident that with time families tended to shift their attitudes over a period of years to the view that the participant would rather be dead.
3) At this point families put in place ‘ceilings of care’ such as ‘do not attempt cardiopulmonary resuscitation’ (DNACP) and an agreement not to aggressively treat infections (e.g., with intravenous antibiotics).
4) Despite their desire that their loved one’s life be ended, family members were generally very frightened at the thought of the patient ‘starving to death’.
5) A number of interviewees, with varying levels of seriousness, had thought of illegally killing their relative in a ‘human way’, so as to avoid the withdrawal of Artificial Nutrition and Hydration.
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.
Families speak of mercy killing to avoid withdrawal of life sustaining treatment
life sustaining treatment
withdrawal of life support
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