‘We did our damnedest to ensure our mother had a “good death”’

Prof Jenny Kitzinger has a photograph of her sister Polly giving a talk about the right of patients to be heard, taken on the morning of March 30th, 2009. She was an advocate for people who had lost the mental capacity to make their own decisions.

A few hours later, those rights disappeared in an instant for Polly herself. That was at the moment of a “head-on car crash”, says Jenny. “And they have never been restored to her.”

Polly suffered catastrophic brain injuries in the accident, near Brecon in Wales. Now aged 55, she is profoundly mentally and physically disabled, requires 24/7 care and is not in law capable of making her own decisions. If the wishes she had made known long before becoming incapacitated had been respected, certain medical interventions would have been withheld and, Jenny says, Polly “would no longer be with us in body”.

“What she ended up trapped in, is so not what she would have wanted,” Jenny stresses. Unusually, it’s not as if they hadn’t talked at length about such matters. The sisters shared a passionate, professional interest in medical ethics – Polly through her advocacy work and Jenny, who was already running a research centre looking at decision-making at the edge of technology.

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Unfortunately for Polly and all her family, she never put her wishes in writing. If she had drawn up an Advance Decision document – popularly still referred to as a “living will” – about the circumstances in which she would or would not want life-prolonging treatments, Jenny knows from all the conversations they had that it would have included refusing a feeding tube within the first two years after her injury.

It doesn't fit with my understanding of human rights or for her as an individual

“She was very clear about what she wanted; she told us. She thought that was enough and it wasn’t. Had she put what she wanted in writing and [got] a witness signature, her wishes would have been respected.”

The clarity with which Polly had expressed her views about such matters before her car crash “makes the irony, the pain, the guilt and distress where we are, and where we have been for eight years, Kafkaesque, surreal”, says Jenny. “It doesn’t fit with my understanding of human rights or for her as an individual. So I desperately wish she would have put her wishes in writing so that it would have been easier to defend them.

“And I desperately wish that the doctors who treated my sister had had a better understanding of ‘best interest’ decision-making so that they could have respected her wishes. Even though it wasn’t in writing, there was ample evidence from all her family and friends about what her wishes were.”

In the midst of this very personal tragedy Jenny, who is professor of communications research at Cardiff University and describes herself “as a researcher through and through”, looked to find answers in the only way she knew. Along with another of her sisters, Celia Kitzinger, a professor at the University of York, they applied themselves to research.

At the outset they wondered was it the particular personalities and beliefs of the doctors they encountered that were responsible for over-riding Polly’s wishes, as testified to by her family, or was it the system? The picture of a much more widespread problem started to emerge.

“Any personal story could be the prompt for really bad recommendations for policies,” points out Jenny, who is to be the keynote speaker at a forum on end of life in Dublin in October. Whereas eight years of research is the solid foundation for the advice of her and Celia to the powers-that-be.

There’s a groundswell on this issue within healthcare and the public, Jenny reports. Some clinicians are troubled by what they are seeing as people are saved “at the margins of a quality of life they might not have considered worth living” and by the “very heroic and brutal interventions” used to sustain that life.

As co-directors of the Coma and Disorders of Consciousness Research Centre, the Kitzingers have also interviewed almost 100 family members of patients with devastating brain injuries who have been in a vegetative state or minimally conscious for some time.

“Some of those believe ongoing treatment is right, certainly for the first few years, and quite a lot, especially after a few years, think ongoing treatment is not right. It is common for them to say ‘if only they had written an Advance Decision . . .’ and they are much more likely to have written an Advance Decision themselves.”

The Kitzinger sisters – five of them in total – were never ones to allow "the system" to make unthinking choices for themselves or for others. As the daughters of childbirth expert Sheila Kitzinger, who revolutionised attitudes towards the male-dominated maternity system, it was in their blood not to take the status quo for granted. And with their father, Uwe, an Oxford don who had come to England as a child refugee from Nazi Germany and who did a lot of work on behalf of refugees, the sisters grew up in a political household with a keen sense of human rights.

Celia was a key player in the introduction of equal marriage in the UK, after she and Sue Wilkinson took the government to court in 2006 to recognise their 2003 marriage in Vancouver. Now, Celia and Jenny’s work on promoting people’s rights at the end of life mirrors their mother’s advocacy.

There's  is an important distinction; to know it is not the right tool for some people and it is the right tool for others

“Sheila campaigned for women’s control over their bodies at the beginning of life and Celia and I are, I guess, working for people’s control over their bodies at the end of life,” she says.

They co-authored a report for the Welsh government on increasing the understanding and uptake of Advance Decisions and it is on this topic Jenny will be speaking at the Irish Hospice Foundation’s bi-annual forum in Dublin Castle on October 10th.

Although she wants to raise awareness about them –  they are known as Advance Healthcare Directives in Ireland – that does not mean she thinks everyone should have one.

“That is an important distinction; to know it is not the right tool for some people and it is the right tool for others.” There are pros and cons – you won’t have all the facts when compiling it, she points out. While some people are confident they know what they would want if they were to be in a coma, a vegetative state, or minimally conscious, others believe in putting their fate in the hands of their God or their doctor.

“It looks like that, if well publicised, about one in three people wants them and yet the uptake is only about 4 per cent.”

Although eventual death is the one certainty in life, people are still reluctant to talk about it, let alone prepare for it. Even people who are prudent enough to make wills and set aside money for funeral costs may baulk at making contingency plans for the unpalatable thought of being still alive but incapacitated.

“We talk a lot about people not wanting to talk about death but I think there is a second problem – people not wanting to listen to people talk about death,” says Jenny. Research has shown that it’s quite common for people over 70 being more willing to raise the subject, only to be hushed by their adult children.

“We need to be honest and courageous and listen and not shut people up,” stresses Jenny who, along with the rest of her family “did our damnednest” to ensure their mother had the “good death” she wanted – at home – last year at the age of 86. Having pioneered the concept of birth plans to support women in gaining more autonomy and choice, Sheila had a death plan for herself.

Although able to communicate her wishes herself right up to the last few days, her Advance Decision specified she wanted whatever quantity of drugs were necessary to keep her free from pain and distress, even if that hastened her death; if there was no prospect of recovery she did not want to be kept alive by artificial means and she did not want to be transferred to hospital.

Although knowing their mother had the manner of death she wanted made the family “more at peace with the grief”, Jenny has no wish to hold home death up as an ideal. To do so, she believes, is to ignore people who don’t have social support at home, to ignore how hard it can be and how some people have symptoms that can’t be managed at home.

She is grateful to the NHS for overnight care workers who came in to give them respite and made it bearable and doable at the end for Sheila.

In the eight years since Polly’s accident, Jenny believes that, in the event of a catastrophic brain injury, the situation around trying to do what a person would have wanted has improved.

“There is some good case law that says obviously an Advance Decision helps and is better but, if there isn’t one, that should not completely silence the person.”

It’s not that UK legislation needs to be changed, but to be implemented. “It is called the Mental Capacity Act 2005,” she says, placing heavy emphasis on the year, “it should no longer be bedding down.

“I think there is a problem with medical paternalism. There is a problem with doctors thinking that their medical judgment is the same as a best-interest decision,” she continues.

“A clinical judgment is what you judge to be the effectiveness of a treatment and the side effects. A best-interest decision is whether that person would have wanted that treatment, given your clinical judgment about the side-effects and the effectiveness – and that is a crucial distinction.

“We have to fine-tune person-centred care and put in the time and training to deliver good care. I think it takes more wisdom to know when not to act than it does when to act.”

Every day Jenny wishes Polly was at peace. “I see her as being held hostage to a system that does not understand her values, wishes and beliefs. There is no way of protecting them.

“There was something extraordinary about my brave, opinionated, stubborn, lovely sister who had such clear views on how she lived her life, according to her own passion, beliefs – to see that all stripped away from her. . .”

Living wills: what are they?

Legislation has been in place in Ireland for “living wills”, or what are called Advance Healthcare Directives (AHDs), since December 2015, but is yet to be implemented.

They will be covered under the Assisted Decision-Making (Capacity) Act 2015, which the Irish Hospice Foundation (IHF) describes as "one of the most progressive pieces of legislation in the Western World" on this issue.

“Our legislation supports people to make an unwise decision,” says IHF development officer Deirdre Shanagher. Unlike in the UK, it doesn’t have a provision for “best interest”, under which clinicians can over-rule somebody’s personal decision on treatment options.

However a lot of steps have to be taken before this legislation can be enacted. Key to this, she explains, is the appointment, believed to be imminent, of a director of Decision Support Services, which will be an independent body.

It is envisaged that an online register for AHDs will be established and this will need to be linked to the incoming system of individual health identifiers for everybody using the health service. Healthcare professionals would have to be able to access end-of-life information lodged by their patient.

As the situation stands, AHDs are legal under common law, says Shanagher. “There were decisions made in court that supported people having an Advance Healthcare Directive. What this legislation brings is a legal framework – it will provide clear guidance for people making an AHD and for healthcare professionals.”

The timeframe for its full implementation is impossible to predict. In the meantime, if people want to be proactive about advanced healthcare planning, says Shanagher, there are forms available. "Think Ahead", available on the IHF's website, is one of those forms and it has an AHD in it "that is in keeping with the legislation as far we know at the moment".

The IHF also encourages people not to be afraid of starting conversations about these matters.

“If you feel strongly enough about your preferences at the end of life, it is important you tell people,” she adds.

• Conversations about this and many other aspects of death will be prompted at the "Your Life, Your Death, Your Say", the Irish Hospice Foundation's bi-annual forum in Dublin Castle on October 10th. In addition to keynote speaker Prof Jenny Kitzinger,  former Supreme Court judge Mrs Justice Catherine McGuinness, chair of the National Council of the Forum on End of Life, will deliver the Mary Holland Commemorative Lecture, entitled "The Departure Lounge".  More information and bookings: hospicefoundation.ie 

• Coma and Disorders of Consciousness Research Centre website is cdoc.org.uk
• The report for the Welsh government on increasing the understanding and uptake of Advance Decisions can be down loaded here

[ swayman@irishtimes.com ]