Another landmark right-to-die case hit the U.K. headlines last week. A High Court judge ruled, in W v M & Ors  EWHC 2443 (Fam), that a 52-year- old woman in a minimally conscious state (after contracting viral encephalitis nearly 10 years ago) cannot be allowed to die (by having artificial nutrition and hydration withdrawn) as her family says she would want. Media responses covered the full range of views – from very critical (“’M’ condemned to suffer”) to supportive ("Families must not have the right to play executioner") on the judge’s decision.
The woman, known only as “M,” is not our sister, Polly. But M’s story is very similar to Polly’s – similar enough that some colleagues and acquaintances are surprised when we tell them that it wasn’t us in court. An important difference is that we know Polly would have insisted on us using her real name, as we do here, and on the Web site we set up to celebrate the Polly we knew for 48 years.
M’s sister described her as “fiercely independent” – that could have been us describing Polly. Polly placed huge value on self-determination. She saw herself as a “free spirit.”
She also made her own distinctive health choices and was politically active around various disability rights issues. She was a persistent critic of medical paternalism and routinely avoided Western medicine. She often said she did not fear death, but did fear becoming entangled in the medical system or losing her autonomy.
Her favorite saying was, “Life is not measured by the number of breaths we take but by the moments that take our breath away.” In one of her many notebooks, she wrote, “I think I might die around when I’m forty – doing something exciting, somewhere beautiful, suddenly.”
Polly was in a car crash in March 2009. She suffered multiple fractures and serious brain injury and was taken unconcious to hospital, dependent on artificial ventilation. After a few days, a tracheostomy was performed and eventually she regained the ability to breath by herself. Artificial nutrition and hydration were provided through a nasal-gastric tube and then via a tube directly into her stomach.
Everyone’s brain injury is different. No clinician can predict with absolute certainty the outcome for any particular patient. But we understood – from her doctors and from our own research – that she was likely to be left either vegetative, minimally conscious, or with profound multiple physical and mental disabilities. Barring a miracle, even the most optimistic prognosis was that she would never be able to live independently. Polly didn’t believe in miracles and would not have wanted to take the risk of survival given this information.
In the U.K., families are not legally entitled to make “substituted judgements” on behalf of an incapacitated patient, and formal advance directives are in their infancy. It is only since 2007, with the implementation of the Mental Capacity Act, that advance decisions (ADs) – formal documents specifying which treatments someone wishes to refuse if he or she loses capacity – have been legally recognized. Fewer than 3 percent of people in the UK have ADs. Polly was one of those who didn’t – but the way she lived her life, the conversations we’d had with her, the cartoons she drew, her poetry, her notebook and diary entries bear more powerful witness to what she would want in this situation than a formal legal document ever could.
Under the Mental Capacity Act, clinicians, rather than family members, are “decision-makers” in cases like Polly’s. Clinicians must consult family members about the incapacitated person’s values, beliefs, wishes and feelings, but these factors do not determine the “best interest” decision-making prescribed by the act. We persistently tried to communicate Polly’s values to her doctors. Weeks before she got her second bout of potentially life-threatening pneumonia we asked her clinical team to consider whether antibiotics were appropriate. They said it was “too early” to discuss this, and subsequently administered them. No decisions could yet be taken, they said, and “we must wait and see.”
In June 2009 Polly emerged into a “minimally conscious state.” While she was vegetative, we had been told that her thrashing, sweating, choking, and teeth-grinding meant nothing, but now her clinical team agreed that Polly was clearly experiencing pain and distress (and gave medication accordingly, with mixed success).Yes, there were times when she would smile or interact, much as M apparently does, but there were also months of constant moaning and expressions of fear and confusion. She was labelled as having “violent and aggressive behaviours” because she sometimes resisted treatment – biting, scratching. and kicking. “Wait and see” was not a cost-free strategy, not only because of such evident suffering, but because her options now were severely circumscribed.
At this point, there had never been an application to the U.K. courts for the withdrawal of artificial nutrition and hydration for a patient diagnosed as minimally conscious. Only cases of patients diagnosed as permanently vegetative had come before the courts, and withdrawal in these cases had been regularly authorized. M’s case is a landmark because it is the first one involving a minimally conscious patient. The judgment sends a clear message that the law requires administration of artificial nutrition and hydration for minimally conscious patients whether they would have wanted it or not.
One consequence of the decision is likely to be earlier withdrawal of life-prolonging treatments, and earlier applications for withdrawal of artificial nutrition and hydration (as soon as the one-year period required for diagnosis of persistent vegetative state is over) by families concerned that without quick action, the “window of opportunity” for court-approved withdrawal will be slammed shut. A judgment intended to promote life could have the unintended consequence of limiting the chance of recovery for some of those who, unlike Polly, might have been willing to risk it.
Like M, Polly has been left with profound mental and physical disabilities. Two and a half years after her accident Polly is still dependent on artificial nutrition and hydration and round-the-clock care. She continues to make slow progress, and may no longer fit the minimally conscious diagnosis (though its upward limit is not defined). We are told her life expectancy is more than 20 years. Her current existence is deeply out of keeping with the life she had always valued.
As a family, we can (and do) debate whether Polly might change her mind and accommodate to her circumstances. Perhaps, given time, a “new Polly” will emerge and be content with her drastically circumscribed existence. We are well aware that providing, withholding, or withdrawing artificial nutrition and hydration raises a host of ethical, political, and social dilemmas. But reading the M judgment as Polly’s sisters, we are, above all, dismayed and outraged at the judge’s failure to engage seriously with M’s views and opinions.
M didn’t have a formal AD, but her partner said she would be “horrified” at her current situation. She had told both her sister and her partner that she never wanted to live in residential care or be dependent on others – that she wanted to be “off quick.” The judge accepted that these were reliable reports of M’s views and that it was very unlikely that M would ever recover. However, he said, “While I take those statements into account, they are not binding and in all the circumstances I do not consider they carry substantial weight in my decision.” He felt it would “be wrong to attach significant weight to those statements made prior to her collapse” when setting them against “the importance of the sanctity of life.” Our hearts go out to M and to her family.
For Polly, who campaigned passionately for a health service that listened to patients, there could be no worse form of medical negligence and abuse. We knew within weeks, while Polly was still in a deep coma, that if she were able to understand what was happening to her, and her prognosis, she would have refused all life-prolonging treatment. We are left asking: at what point can, and should, the values and beliefs of M and Polly, and people like them, inform their health care; and how can we ensure that medicine both respects the values of individuals and serves the common good?
Celia Kitzinger is a professor in the department of sociology at University of York. Jenny Kitzinger is professor of communications research at Cardiff University.