In Samuel Beckett’s Waiting for Godot, there’s a scene in which one of the characters cries out at the futility of life: “They give birth astride of a grave,” he shouts, “the light gleams an instant, then it’s night once more.” During an unforgettable paragraph in Smoke Gets in Your Eyes the mortician Caitlin Doughty goes further: a visibly pregnant woman attends her funeral home to arrange a cremation for her baby. “That’s a shame about your baby,” a colleague says to her, “but you’re lucky you’re pregnant, and gonna have another child.” He shouldn’t have spoken so soon: it was her unborn baby that needed the funeral.
In what gets called the “natural” world it’s usual to die in infancy, but for human beings, there remains something deeply unacceptable about that truth. Advances in medical care over the last few decades, and the attendant shift in death from home to hospital, now mean that few of us spend time with those who are dying. The unprecedented longevity of many of our grandparents, and the creeping atomisation of communities, have reinforced many people’s alienation from death. It’s become fashionable to complain that as a society we’re out of touch with death, but for the most part, that’s a good thing. We should celebrate our lack of acquaintance with the stench and the agony that, for much of human history, all too often accompanied the last days of life. Still, modern life permits a distance from death and dying that brings its own problems, not least a difficulty in accepting the inevitable, or being able to adequately grieve. Doughty is a trailblazer of a “death positive” movement, beginning in the US but now very much over here, that seeks to normalise the contemplation of mortality with “death cafes” and “death salons”. Her story about the pregnant mother arranging a funeral for her unborn baby is just one of many sobering tales she offers, but her book is not a catalogue of horror; it’s a hilarious, poignant and impassioned plea to revolutionise our attitudes to death.
As a little girl growing up in Hawaii Doughty was death-obsessed; on teenage work experience at a local hospital she asked to be assigned to the mortuary. She went on to study medieval history, and wrote a thesis about dead babies in witchcraft. “Functionally morbid”, after college she had the ambition of working at a crematorium. “Academic papers had provided a fix, but they weren’t enough,” she writes. “I wanted the harder stuff: real bodies, real death.”
Her memoir of Westwind Cremation & Burial in San Francisco is shot through with arresting descriptions of how modernity deals with the dead: “a girl always remembers the first corpse she shaves”; “seeing a flaming human skull is intense beyond your wildest flights of imagination”; “there is nothing like consistent exposure to dead bodies to remove the trepidation attached to dead bodies”. She describes the process of embalming in shuddering detail, as well as the importance of a good seal on a cremation-chamber door: “from the chute where the bones are swept out, came a sluice of gushing molten fat … I plunked down on the floor with a pile of rags, sopping and swabbing up the fat as it cascaded out.”
Once the body itself has burned, bones are often intact – most jurisdictions insist these be ground in a cremulator before being returned to the family. The cremulator doesn’t work for babies’ bones – these she has to grind by hand. “I had written my thesis on medieval witches accused of roasting dead infants and grinding their bones,” she observes. “A year later I found myself literally roasting dead infants and grinding their bones.”
The intensity of such a life, confronted with the reality of death and an enforced intimacy with the grief of others, deepens her emotions: “It felt as if my life up to this point was spent living within a tiny range of sensations, rolling back and forth like a pinball. At Westwind that emotional range was blasted apart, allowing for ecstasy and despair like I had never experienced.” She becomes more philosophical about the fragility that we embody as human beings. She wants us to experience the peace she’s achieved through her work – her acceptance of her mortality: “This confident, stable feeling was available to anyone,” she writes, if only “society could overcome the burden of superstition”.
Another death-positive campaigner is Brandy Schillace, a cultural historian based in Cleveland, Ohio, whose book opens by lamenting the curtailment of western death culture. We have forgotten how to grieve, she says; psychiatrists now categorise disabling grief as “pathological” only two months after the death of a loved one. This places immense demands on the bereaved to “get over it”, and promotes the medicalisation of sadness. In the first half of her book she articulates this problem, surveys other cultures’ death practices and offers a history of western attitudes to death, dwelling in particular on the Victorians’ memento mori practices. In their human-hair brooches and skeleton pendants she finds a message for the modern world: “The modern westerner has lost loss; death as a community event, and mourning as a communal practice has been steadily killed off.”
During the Victorian era, doctors began to replace clergy as the familiars of death; Schillace examines how dissecting cadavers became a rite of passage for medical students, and the attendant ways clinical science has sequestered the dying from everyday life. Just as lay birth assistants (“doulas”) are becoming more commonplace, she calls for more layfolk to become “death midwives” – skilled in assisting the dying – so that death can be mediated by professionals other than clinical staff.
Schillace teaches humanities at the medical school in Cleveland, and is shocked by how much information her trainee doctors have to cram, leaving little time for the literary or historical texts she sets them. “You enter [medical school] as a human,” one doctor tells her, “and years later, you get to be a human again.” That particular pendulum of medical training may be reaching the end of its arc; in the UK, at least, there are hopeful signs that we may be swinging back towards a more personalised, respectful and mutually negotiated model of medical care. End-of-life care is relatively well developed in the UK as opposed to the US, and hospices are consulted and respected for their expertise in providing a good death. But the provision of these “palliative” services is still patchy, provided by charities rather than being a cornerstone of the NHS as it should be. In her book Living With Dying, GP and BMJ columnist Margaret McCartney has written a manifesto for a more humane approach to dying, urging fewer pills and protocols, and greater attention to individuals’ wishes.
Smoke Gets in Your Eyes and Death’s Summer Coat are short on statistics, but McCartney makes up for them: between 2000 and 2010 the death rate in the UK fell by an extraordinary quarter for men (from 8,477 to 6,406 deaths per million), and a fifth for women (from 5,679 to 4,581 deaths per million). There has been a near doubling in life expectancy over the last 100 years. The success of specialised medicine and the development of institutionalised care has meant less and less of us now look after the sick in our own homes, so when a loved one wants to come home to die, family carers struggle: “Dealing with bathing and washing, toileting and personal hygiene, vomit and faecal matter … can be arduous, unrelenting, back-breaking work.” McCartney wants to see palliative and hospice services expanded from their current postcode-lottery status to a more comprehensive system. But at the same time she challenges the wisdom that everyone should be able to die wherever they want to, reminding us that families have a say too: one Canadian study found that while only 5% of terminally ill patients wanted to die in an institution, 14% of carers wanted their relatives to die in one. While 30% of patients didn’t die in their preferred location, 92% of their carers felt that they’d died in the most appropriate place. The family carers I meet in my work as a GP are also my patients; the death of their loved one will be just the beginning of a voyage through grief – a voyage that can be harder, and more prolonged, if their own preferences haven’t been respected. McCartney also acknowledges the uncomfortable truth that relatives are often expected to care for someone with whom they’ve had a fraught, fractured or even abusive relationship.
In terms of improving quality of life, good personalised care is more valuable than pills or medical interventions, yet “care” can’t be assessed by Nice, and clinicians can’t prescribe it. This is the infuriating paradox McCartney wants to address: “The obvious and far more ethical answer,” she writes, “would be for doctors to be able to prescribe more time and contact with skilled carers first, rather than medication.” Local councils now routinely “auction” care contracts to the lowest-bidding private firms, which must use zero-hour contracts and pittance-paid staff just to balance the books – the situation in care homes is just as bad. The low value we now place on care is an enduring tragedy – a collective scar on our society’s conscience. Those in the caring professions see how damaging this attitude is: since one of my own patients began using a wheelchair, she has had 70 different strangers through the door to help her with intimate care such as bathing, dressing and toileting.
Another target in McCartney’s sights is institutional expectation that doctors sign Do Not Attempt Resuscitation (DNAR) agreements with the terminally ill, even in cases when resuscitation would be overwhelmingly likely to cause harm. The conversation itself often causes distress, and signing such disclaimers wouldn’t be contemplated for other medical interventions with as little likelihood of success. She proposes that we replace the DNAR forms with “AND” ones – “Allow Natural Death” – quoting a woman whose mother was assaulted in her final hours by paramedics who ignored her DNAR form anyway: they “robbed [her] of her natural death”, the woman wrote, causing “prolonged dying in a manner that was contrary and repugnant to her wishes”.
“Few can welcome death,” McCartney writes, “but acceptance of it is something that we all must do, though it is difficult and often traumatic.” One of the roles GPs perform is “bearing witness”, and McCartney’s laudable goal is that “everyone will have the funding for hands-on, personal care, that hospice care would be statutorily funded, and that choices in treatment could be offered even if it meant that the time of our death would be accelerated”.
For Samuel Beckett’s character, life was a glimmer of light between the darkness of the womb and that of the grave. Vladimir Nabokov agreed: his memoir Speak, Memory declares “the cradle rocks above an abyss, and common sense tells us that our existence is but a brief crack of light between two eternities of darkness”. Our lives might pass in a flash, but what we do with our own flash of light, and its inevitable dying, still matters. It’s not true that as a society we’ve rejected death: some of my patients meet it with dignity and acceptance, and their loved ones with good grace. The families who do so have usually been able to talk about it, articulate their fears, and be honest about what’s important to them. Books such as these are a valuable contribution to the debate about death, but will also facilitate those private conversations. Reliable and compassionate care helps too: “If we are fearing our death,” writes McCartney, “let us at least not fear for the things that we as a society can and should provide.”
• Gavin Francis’s book about medicine, culture and the body, Adventures in Human Being, is out next month. To order Smoke Gets in Your Eyes for £9.99 (RRP £12.99), Death’s Summer Coat for £13.59 (RRP £16.99) or Living With Dying for £9.59 (RRP £11.99) go to bookshop.theguardian.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min P&P of £1.99.
