Interview

Culture

Death & life

S&U interviews

31 October 2023

8 min read

Rediscovering 'ordinary dying'

On the eve of her Theos annual lecture on 'Death for Beginners', Robert Wright speaks to former palliative care consultant Kathryn Mannix about the need for everyone to re-engage with the process of dying. Part of the Seen & Unseen How to Die Well series.

Robert Wright

Robert is a journalist at the Financial Times.

A woman stands in an autumnal-looking park, with her hands in her pockets

Katherine Mannix.

Shortly after the late Queen Elizabeth died, in September last year, Kathryn Mannix, a former palliative care doctor, decided to point out something that had been going unremarked. Mannix, who spent 30 years in various palliative care roles in the North of England until retiring in 2016, wrote on the social media platform then called Twitter that the world had watched the late monarch live through a process that she called “ordinary” dying. But, she added, the dying had gone “unspoken, un-named”.

Mannix’s 12-post thread pointing out what the world had been watching was to prove one of the most successful steps yet in her long-running campaign to refamiliarise the world with how people die, the signs that someone is dying and how the process works. The thread has been viewed several million times. Among the replies to her post, according to Mannix, were several from people saying they recognised from it that relatives were going through the process and they should prepare.

Mannix hopes that her efforts will ensure people learn to cope better with their own and others’ inevitable deaths in ways that work better both medically and emotionally.

“The queen’s death was no surprise to those of us who have been watching that process that we recognise as ordinary dying,” Mannix says, in an interview over lunch in Newcastle, near her Northumbria home.

“The person got into hospital to have treatment to stop them from dying. When they died, that was a medical failure. That was an embarrassment.”

Mannix will take another substantial step in her campaign on November 1 when she delivers the annual lecture for the religious think-tank Theos on Dying for Beginners. The lecture will revisit the lessons of her thread about the queen and two successful books about dying: With the End in Mind, recounting the lessons of her career in palliative care, and Listen, about finding the words for end-of-life conversations. All of her work has stressed the unhelpful aspects of medical practitioners’ increasing involvement in deaths. Doctors’ increasing power to prevent death in many circumstances and delay it in others has made it, in her view, damagingly unfamiliar.

However, Mannix insists that, while the November 1 lecture has been organised by a faith-based think-tank, her principles are applicable whether people understand their lives through a spiritual prism or via something else like family, politics or art.

“There are a number of constructs that give people meaning,” Mannix says.

At the heart of Mannix’s message is the idea that death was once a familiar process that people knew how to manage. She argues that the last century’s medical advances changed that.

“I think we’ve forgotten because over the course of the twentieth century life expectancies nearly doubled,” Mannix says.

She points to a range of factors behind the shift, from improved sanitation and vaccination programmes to the founding in the UK of the National Health Service and the introduction of antibiotics.

She dates the shift of dying from home to hospital to the second half of the twentieth century.

“It was almost like dying was kidnapped inside hospitals then,” she says. “The process itself got slightly distorted by the medical interventions like intensive care units, so the process became less recognisable.”

The key change, according to Mannix, was that death became “the enemy”.

“The person got into hospital to have treatment to stop them from dying,” she says. “When they died, that was a medical failure. That was an embarrassment.”

“It’s hard to have a conversation with a person who has no pegs to hang that conversation on. The current population has no idea about dying.”

Doctors started to keep in hospital people who would prefer to be at home with their grandchildren, in case there was one more thing they might try that would save their lives, Mannix says.

“We need to celebrate that medicine can do so much more than it used to be able to do,” Mannix says. “But we need to remember that those achievements are only postponing dying. We’ve not cured death.”

Clinicians need to recognise the point in illnesses where death becomes inevitable and speak to patients about their priorities for their remaining time, she adds.

“Survival at all costs might not be what is most important to them,” Mannix says. “There may be things that they wish to fulfil.”

Mannix is clear that the UK at least remains a long way from learning the lessons that she is trying to teach. She was prompted to write her thread about Queen Elizabeth’s death partly by the ending to a news bulletin announcing that the monarch’s family were rushing to her bedside at Balmoral. Mannix says the newsreader finished the segment, hours before the death was announced, by saying “Get well soon, ma’am.” She describes it as “a dreadful example of our death-denying”.

She is giving the annual Theos lecture as the group is in the midst of releasing a suite of resources designed to provoke greater debate around death and dying. They include a video where Mannix explains the dying process. The group’s research paper Ashes to Ashes, published in March, showed that many British people had similar priorities for their own deaths and those of loved ones as set out in Mannix’s work. They wanted to be free of pain or suffering, surrounded by family, probably at home, to be reconciled to people and to be prepared.

According to Mannix, however, even her fellow medical professionals feel poorly equipped to begin conversations with patients or their families about impending death. Many people had contacted her after reading With the End in Mind saying that they were convinced of the need for frank conversations about death but had no idea how to start them.

“The feedback from doctors and nurses was the same as from the general public – ‘I don’t know how to talk about this bit’,” Mannix says. “’Nobody taught us about this in training’.”

It is also a challenge for medical professionals that patients and their families are typically resistant to conversations about death, she adds.

“The doctor doesn’t want to be the bad guy or girl and constraints in the NHS are such they can’t find time for the length of conversation that’s likely,” Mannix says, adding that many doctors are also unfamiliar with exactly how the dying process tends to unfold.

“They’re not taught about dying,” Mannix says of trainee clinicians. “They’re not taught to see good dying as a good medical outcome and it could be.”

Those conversations are all the harder, she adds, because society as a whole has so little conception of the process of death.

“It’s hard to have a conversation with a person who has no pegs to hang that conversation on,” Mannix says. “The current population has no idea about dying.”

In wider society, meanwhile, she would like to see far more communities taking the opportunity to support the dying.

The questions fundamentally end up being spiritual or philosophical ones, Mannix says. She declines to be drawn on her own spiritual practices but describes herself as “spiritually curious”. She similarly declines to outline her position on the debate about assisted dying, saying that expressing a view on that would be a distraction from her primary purpose of promoting discussion of the ordinary dying process.

But she says questions about how to manage death, whether to prolong life and the balance between quality and length of life inevitably raise “societal questions”.

“We all want to think about our life being worth something and about the purpose that we think is the purpose of being alive,” Mannix says.

Mannix hopes her campaign will prompt religious leaders to think more carefully about how they support families and dying people. In particular, she would like priests to acknowledge to those they are supporting that faith will not always banish fear and that the faithful will sometimes feel abandoned by God in the face of death. She would like to see far more thorough training for clergy throughout their careers in how to have such conversations.

She would also like to see more clergy learn more about the process of death, so that they can reassure families about what they are witnessing – for example, that apparent gasping from the dying person does not indicate pain. She expresses optimism about the growth of civil society organisations – some based around religious organisations – seeking to encourage a more open discussion of death and dying. She speaks particularly warmly of the Death Cafe movement – where people meet for cake and coffee to discuss death issues – and the End of Life doula movement. End of Life doulas seek to shepherd people through death the same way that birth doulas assist women in labour.

Both of those movements have a key role to play in bringing about the revolution that Mannix would like to see in society’s understanding of death and its role in life.

Asked what a balanced approach to the issue would look like, Mannix says it would be “very helpful” if people were told at the outset when they were diagnosed with a long term, potentially life-limiting condition that it could be so.

“Currently, people understand that cancer can kill you,” Mannix says. “But there are many people walking around the country who have long-term lung diseases, kidney diseases, who just wonder why they never feel as well as they used to do.”

In wider society, meanwhile, she would like to see far more communities taking the opportunity to support the dying.

“A decision for the public would be to think of an organisation or society or a community that they belong to and how could they be agents of change in that community to explore the concept or ordinary dying,” Mannix says.

Such communities can decide how best to prepare and make available support for other community members when they are dying.

“Their dying will come one by one,” Mannix says. “We’ll all take our own turn.”

While most tickets for Kathryn Mannix’s talk on November 1 have been taken, some more may become available at theosthinktank.co.uk. For those unable to attend, the lecture will be filmed and posted afterwards on the Theos website.

Article

Assisted dying

Care

Culture

Death & life

13 November 2024

8 min read

The deceptive appeal of assisted dying changes medical practice

In Canada the moral ethos of medicine has shifted dramatically.

Ewan Goligher

Ewan is a physician practising in Toronto, Canada.

a doctor consults a tablet against the backdrop of a Canadian flag.

Once again, the UK parliament is set to debate the question of legalizing euthanasia (a traditional term for physician-assisted death). Political conditions appear to be conducive to the legalization of this technological approach to managing death. The case for assisted death appears deceptively simple—it’s about compassion, respect, empowerment, freedom from suffering. Who can oppose such positive goals? Yet, writing from Canada, I can only warn of the ways in which the embrace of physician-assisted death will fundamentally change the practice of medicine. Reflecting on the last 10 years of our experience, two themes stick out to me—pressure, and self-deception.

I still remember quite distinctly the day that it dawned on me that the moral ethos of medicine in Canada was shifting dramatically. Traditionally, respect for the sacredness of the patient’s life and a corresponding absolute prohibition on deliberately causing the death of a patient were widely seen as essential hallmarks of a virtuous physician. Suddenly, in a 180 degree ethical turn, a willingness to intentionally cause the death of a patient was now seen as the hallmark of patient-centered doctor. A willingness to cause the patient’s death was a sign of compassion and even purported self-sacrifice in that one would put the patient’s desires and values ahead of their own. Those of us who continued to insist on the wrongness of deliberately causing death would now be seen as moral outliers, barriers to the well-being and dignity of our patients. We were tolerated to some extent, and mainly out of a sense of collegiality. But we were also a source of slight embarrassment. Nobody really wanted to debate the question with us; the question was settled without debate.

Yet there was no denying the way that pressure was brought to bear, in ways subtle and overt, to participate in the new assisted death regime. We humans are unavoidably moral creatures, and when we come to believe that something is good, we see ourselves and others as having an obligation to support it. We have a hard time accepting those who refuse to join us. Such was the case with assisted death. With the loudest and most strident voices in the Canadian medical profession embracing assisted death as a high and unquestioned moral good, refusal to participate in assisted death could not be fully tolerated.

We deceive ourselves if we think that doctors have fully accepted that euthanasia is ethical when only very few are actually willing to administer it.

Regulators in Ontario and Nova Scotia (two Canadian provinces) stipulated that physicians who were unwilling to perform the death procedure must make an effective referral to a willing “provider”. Although the Supreme Court decision made it clear in their decision to strike down the criminal prohibition against physician-assisted death that no particular physician was under any obligation to provide the procedure, the regulators chose to enforce participation by way of this effective referral requirement. After all, this was the only way to normalize this new practice. Doctors don't ordinarily refuse to refer their patients for medically necessary procedures; if assisted death was understood to be a medically necessary good, then an unwillingness to make such referral could not be tolerated.

And this form of pressure brings us to the pattern of deception. First, it is deceptive to suggest that an effective referral to a willing provider confers no moral culpability on the referring physician for the death of the patient. Those of us who objected to referring the patient were told that like Pilate, we could wash our hands of the patient’s death by passing them along to someone else who had the courage to do the deed. Yet the same regulators clearly prohibited referral for female genital mutilation. They therefore seemed to understand the moral responsibility attached to an effective referral. Such glaring inconsistencies about the moral significance of a referral suggests that when they claimed that a referral avoided culpability for death by euthanasia, they were deceiving themselves and us.

The very need for a referral system signifies another self-deception. Doctors normally make referrals only when an assessment or procedure lies outside their technical expertise. In the case of assisted death, every physician has the requisite technical expertise to cause death. There is nothing at all complicated or difficult or specialized about assessing euthanasia eligibility criteria or the sequential administration of toxic doses of midazolam, propofol, rocuronium, and lidocaine. The fact that the vast majority of physicians are unwilling to perform this procedure entails that moral objection to participation in assisted death remains widespread in the medical profession. The referral mechanism is for physicians who are “uncomfortable” in performing the procedure; they can send the patient to someone else more comfortable. But to be comfortable in this case is to be “morally comfortable”, not “technically comfortable”. We deceive ourselves if we think that doctors have fully accepted that euthanasia is ethical when only very few are actually willing to administer it.

We deceived ourselves into thinking that assisted death is a medical therapy for a medical problem, when in fact it is an existential therapy for a spiritual problem.

There is also self-deception with respect to the cause of death. In Canada, when a patient dies by doctor-assisted death, the person completing the death certificate is required to record the cause of death as the reason that the patient requested euthanasia, not the act of euthanasia per se. This must lead to all sorts of moments of absurdity for physicians completing death certificates—do patients really die from advanced osteoarthritis? (one of the many reasons patients have sought and obtained euthanasia). I suspect that this practice is intended to shield those who perform euthanasia from any long-term legal liability should the law be reversed. But if medicine, medical progress, and medical safety are predicated on an honest acknowledgment about causes of death, then this form of self-deception should not be countenanced. We need to be honest with ourselves about why our patients die.

There has also been self-deception about whether physician-assisted death is a form of suicide. Some proponents of assisted death contend that assisted death is not an act of deliberate self-killing, but rather merely a choice over the manner and timing of one's death. It's not clear why one would try to distort language this way and deny that “physician-assisted suicide” is suicide, except perhaps to assuage conscience and minimize stigma. Perhaps we all know that suicide is never really a form of self-respect. To sustain our moral and social affirmation of physician-assisted death, we have to deny what this practice actually represents.

There has been self-deception about the possibility of putting limits around the practice of assisted death. Early on, advocates insisted that euthanasia would be available only to those for whom death was reasonably foreseeable (to use the Canadian legal parlance). But once death comes to be viewed as a therapeutic option, the therapeutic possibilities become nearly limitless. Death was soon viewed as a therapy for severe disability or for health-related consequences of poverty and loneliness (though often poverty and loneliness are the consequence of the health issues). Soon we were talking about death as a therapy for mental illness. If beauty is in the eye of the beholder, then so is grievous and irremediable suffering. Death inevitably becomes therapeutic option for any form of suffering. Efforts to limit the practice to certain populations (e.g. those with disabilities) are inevitably seen as paternalistic and discriminatory.

There has been self-deception about the reasons justifying legalization of assisted death. Before legalization, advocates decry the uncontrolled physical suffering associated with the dying process and claim that prohibiting assisted death dehumanizes patients and leaves them in agony. Once legalized, it rapidly becomes clear that this therapy is not for physical suffering but rather for existential suffering: the loss of autonomy, the sense of being a burden, the despair of seeing any point in going on with life. The desire for death reflects a crisis of meaning. We deceived ourselves into thinking that assisted death is a medical therapy for a medical problem, when in fact it is an existential therapy for a spiritual problem.

We have also deceived ourselves by claiming to know whether some patients are better off dead, when in fact we have no idea what it's like to be dead. The utilitarian calculus underpinning the logic of assisted death relies on the presumption that we know what it is like before we die in comparison to what it is like after we die. In general, the unstated assumption is that there is nothing after death. This is perhaps why the practice is generally promoted by atheists and opposed by theists. But in my experience, it is very rare for people to address this question explicitly. They prefer to let the question of existence beyond death lie dormant, untouched. To think that physicians qua physicians have any expertise on or authority on the question of what it’s like to be dead, or that such medicine can at all comport with a scientific evidence-based approach to medical decision-making, is a profound self-deception.

Finally, we deceive ourselves when we pretend that ending people’s lives at their voluntary request is all about respecting personal autonomy. People seek death when they can see no other way forward with life—they are subject to the constraints of their circumstances, finances, support networks, and even internal spiritual resources. We are not nearly so autonomous as we wish to think. And in the end, the patient does not choose whether to die; the doctor chooses whether the patient should die. The patient requests, the doctor decides. Recent new stories have made clear the challenges for practitioners of euthanasia to pick and choose who should die among their patients. In Canada, you can have death, but only if your doctor agrees that your life is not worth living. However much these doctors might purport to act from compassion, one cannot help see a connection to Nazi physicians labelling the unwanted as “Lebensunwortes leben”—life unworthy of life. In adopting assisted death, we cannot avoid dehumanizing ourselves. Death with dignity is a deception.

These many acts of self-deception in relation to physician-assisted death should not surprise us, for the practice is intrinsically self-deceptive. It claims to be motivated by the value of the patient; it claims to promote the dignity of the patient; it claims to respect the autonomy of the patient. In fact, it directly contravenes all three of those goods.

It degrades the value of the patient by accepting that it doesn't matter whether or not the patient exists.

It denies the dignity of the patient by treating the patient as a mere means to an end—the sufferer is ended in order to end the suffering.

It destroys the autonomy of the patient because it takes away autonomy. The patient might autonomously express a desire for death, but the act of rendering someone dead does not enhance their autonomy; it obliterates it.

Yet the need for self-deception represents the fatal weakness of this practice. In time, truth will win over falsehood, light over darkness, wisdom over folly. So let us ever cling to the truth, and faithfully continue to speak the truth in love to the dying and the living. Truth overcomes pressure. The truth will set us free.