Ellie O’Byrne meets the people behind an end of life conference, including keynote speaker Jenny Kitzinger, the academic breaking the taboo around dying.
“There are people who tell me that they’re worried that if they talk about death, or write down their wishes for death, that they’ll die. And my usual answer is, ‘I hate to tell you this, but if you don’t write down your wishes, you’re still going to die.’”
Professor Jenny Kitzinger wants us all to talk about death, and how we would choose to die.
She’s also an exponent of Advance Care Directives, formerly known as “living wills”. As co-director of the UK-based Coma and Disorders of Consciousness Research Centre (CDoC), she has documented the experiences of many families who have a loved one with catastrophic brain injuries; kept alive for years on life support machines, they are patients with little hope of recovery or any kind of quality of life.
She’s a Professor of Communications Research at Cardiff University School of Media, Journalism and Cultural studies, and she founded the CDoC with her sister, sociologist Professor Celia Kitzinger of The University of York.
The Kitzingers have a tragic personal story behind their common field of research. In 2009, their sister Polly had a car accident, sustaining brain injuries that left her initially in a coma, which progressed into a vegetative state.
“We knew from the outset that she had catastrophic brain injuries, but there was this whole array of heroic interventions used to keep her alive,” Jenny says. “And we knew she wouldn’t want that.” Ironically, Polly Kitzinger had herself specialised in the field of service-user advocacy, working with people without the capacity to make their own decisions living in institutional care. But while her family all knew she wouldn’t choose a life where she couldn’t self-advocate, Polly hadn’t left behind legal documents to that effect, and doctors battled to keep her alive against the family’s recommendations.
“She’d always said she’d never, ever want to survive if she couldn’t make her own decisions,” Jenny says. “We had letters about it, poems even. But we were unable to protect her wishes and her choices. Suddenly, she was subject to a medical system that paid little regard to her as an individual.”
After a year and a half in hospital, Polly was moved to a neurological care centre, then to a nursing home. Now, eight years after her accident, she has made a slight recovery, progressing first from a vegetative state to a minimally conscious one. Now, she requires 24-hour care and spoon feeding. It’s still not a life she would have wanted, her sister insists.
“In some ways, you could call it a miracle recovery, but a miracle we wish hadn’t happened,” she says. “Waking up from a prolonged disorder of consciousness, which is what she was in, can happen, but if you’ve been in that state for a long time, you emerge into a twilight zone. You can clearly feel some things, and know some things, and can certainly feel pain, but it may not be a state that anyone – well certainly not Polly – would want to survive in.”
In health, Polly loved gardening, sailing, and making art. In a photo taken at a family gathering the day before her car crash, she stands smiling in bright early summer sunlight. The photo is displayed on a website, www.welovepolly.org, built by the Kitzingers to commemorate Polly as they want her remembered: creative, full of adventure, and, like her siblings, a political activist.
Jenny, Celia and Polly are three of five daughters born to Sheila Kitzinger, the redoubtable natural childbirth activist and author of over 20 books on pregnancy, breastfeeding and female sexuality.
Sheila wrote of childbirth that it was “a political issue, in terms of the power of the medical system, how it exercises control over women and whether it enables them to make decisions about their own bodies and their babies”.
Does Jenny feel that she and Celia are continuing their mother’s work to some extent, in trying to bring empowerment and individual choice to modern, medicalised death?
“I was brought up with the idea that we should have some say over our destinies, and over the important events in life, whether that was birth, marriage or death,” she says.
The CDoC’s online database of video interviews with the families of patients in persistent vegetative states is bleak and tragic viewing, but also presents a realistic view of the challenges they face. Time and again, families describe knowing that their loved one wouldn’t want to be kept alive in their condition, but being powerless to do anything.
There can be nothing more agonising for a family. “The fantasy of awakening is something you cling to sometimes,” Jenny says. “Families may keep grief and despair at bay with media-fuelled fantasy of miracle awakenings.”
By focusing on the one-in-a-million miracle recoveries, Jenny says, the media supports an unrealistic notion of what families can expect to face. “The 99% of people who don’t make that kind of recovery sink into obscurity,” she says.
“They can’t write books about their miracle, they can’t be trumpeted by the scientists or surgeons who saved them. They enter a shadow land of obscurity; the media turns away from representing that sort of existence.”
In her work, Jenny hopes to bring a voice to families living with a loved one in a Persistent Vegetative State. But she also wants to highlight the importance of people making choices while they can, by making a document outlining their choices.
“Institutions inevitably end up treating people according to protocols and procedures, and we need to insert ourselves as individuals,” she says. “That means taking responsibility and making sure our voice can be heard. It’s good to talk to your family about your wishes, but it’s also crucial to fill out whatever legally binding forms are available within your own jurisdiction.”
In Ireland, a change to the law with the Assisted Decision Making (Capacity) Act of 2015 has strengthened the recognition of what are known in the Republic as Advance Healthcare Directives.
Retired Supreme Court judge Mrs. Justice Catherine McGuinness was the Chair of the National Council of the Forum on End of Life in Ireland until 2016. She feels that our reluctance as a society and as individuals to face the subject of death head-on leaves us vulnerable.
“Because you don’t think about it, you’re not prepared,” Justice McGuinness says. “Patients in hospital, or who are having treatment, are autonomous; they have the right to decide whether they want certain treatments or not. But through lack of planning and lack of thought, they can end up being vulnerable to being pushed about.”
Breaking the stigma of talking about death is an important step towards more autonomous choice for the dying, she believes.
“It really does strike me that people are so afraid of talking about death,” she says. “That’s even inherent in the language we use: why can we never say someone has died? Why do we say they’ve ‘passed over’? I think that’s an unhealthy relationship with death, which we all have to face in the end.”
Professor Kitzinger will be the keynote speaker at the Irish Hospice Foundation’s Forum on End of Life in Ireland 2017, “Your Life, Your Death, Your Say” at Dublin Castle, Tuesday, October 10. She’ll be joined by speakers including Mrs Justice Catherine McGuinness for the day-long event, which will include a “Death Café,” a growing phenomenon where people are invited to break the taboo of talking about death and dying in a relaxed environment, over coffee and cake.
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