CATCH UP WITH SOME OF OUR ‘PAST POSTS’ – TODAY WE’RE REPUBLISHING ONE OF THE GREAT POSTS SELECTED AS ‘EDITOR’S CHOICE’ FROM ‘PALLIATIVE MEDICINE’ IN 2018. AND YOU CAN DOWNLOAD THE FULL ARTICLE FREE OF CHARGE…
Professor Jenny Kitzinger and Professor Celia Kitzinger explain the background to their longer article selected as ‘Editor’s Choice’ in the July 2018 issue of Palliative Medicine.
For families, and for clinicians, it can be difficult to accept that withdrawing clinically assisted nutrition and hydration is sometimes the right thing to do.
Our ‘Editor’s Choice’ article in Palliative Medicine is part of a larger study into clinical, social, legal, and ethical aspects of decision-making relating to people who lack the capacity to make these decisions for themselves.
We launched our research and founded the Coma and Disorders of Consciousness Research Centre after our sister, Polly Kitzinger, was catastrophically brain injured in a car crash in 2009. We believe that she was given life-prolonging medical treatments that she would have refused if she could. We described our research rationale in a video made at the very beginning of our project.
Since those early beginnings, we have conducted in-depth interviews with almost 100 people with a relative in a disorder of consciousness – either a Prolonged Vegetative State (known in Europe as Unresponsive Wakefulness Syndrome) or a Minimally Conscious State. We have also interviewed many health professionals working in this area. You can watch some of these interviews on the multi-media resource we created for families and practitioners.
In England and Wales, many patients in prolonged disorders of consciousness have ‘ceilings of treatment’ in place. Their medical notes record that they should not be given cardiopulmonary resuscitation, admitted to intensive care, or given antibiotics in case of life-threatening infections. But they continue to receive clinically assisted nutrition and hydration for years or decades. Estimates indicate there are up to 16,000 people in Permanent Vegetative States receiving continued treatment.
One issue that comes up repeatedly in interviews with families (and some clinicians) is anxiety about the withdrawal of feeding tubes which (for some), seems more like ‘basic care’ than ‘medical treatment’. Concerns about ‘starving and dehydrating’ the patient to death come to the fore when profoundly brain-injured patients have been maintained for years in a medically stable condition, and don’t have a degenerative illness. Some clinicians have ‘conscientious objections’ to withdrawing feeding tubes in these circumstances, and never raise the possibility with families. Some families are also horrified: they say it’s ‘barbaric’, ‘hypocritical’ and ‘you wouldn’t do it to a dog’ (see article here). Many clinicians and families fear a bad death.
Our Palliative Medicine article analyses family members’ descriptions of their relatives’ deaths. A novel feature of the article is the links to film clips from our interviews so you can watch and listen to them (click here for an example). Although it can be hard for families to witness such deaths, overwhelmingly, families described the deaths as ‘peaceful’ – and no one regretted supporting or advocating for treatment withdrawal.
We think it would be helpful for health professionals (and families) to know that with good specialist palliative care (such as that recommended in the relevant National Guidelines) these can be ‘good’ deaths.
- Jenny Kitzinger is at a Professor at the School for Journalism, Media and Culture at Cardiff University.
- Celia Kitzinger recently resigned as Professor in the Sociology Department at University of York and is now an Independent Scholar.
- Follow Jenny and Celia on Twitter @CDOCuk
- Read more Editor’s Choice posts on the EAPC Blog.
Read the full article in Palliative Medicine
This post relates to the longer article, ‘Deaths after feeding tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience’ by Jenny Kitzinger and Celia Kitzinger, published in Palliative Medicine 2018 Vol. 32 (7), page(s): 1180-1188. First published online: March 23, 2018. Download a free copy of the full-text article here. https://doi.org/10.1177/0269216318766430.