When the pandemic first struck, I met a patient who described being rushed into hospital as “like being dropped into Hades”. She grimaced as she struggled to convey the trauma of the masked and faceless staff looming over her bed, the mechanical bleeping and human moaning. Blood leaked from her arm where an exhausted doctor had tried and failed – multiple times – to insert a tube into her vein. The other patients looked shell-shocked or moribund. “This is where I’m going to die,” she had thought to herself, “listening to people howling, staring at doctors in masks, with blood all over my hands.”
The most hellish detail, though, was not what was present, but what my patient lacked. No husband, no children, no friends at her bedside. Disorientated and fighting for air, she faced the prospect of dying from Covid entirely cut off from those she loved most. Worse, her experience wasn’t rare but ubiquitous. On stretchers, in care homes, on trolleys, in corridors, tethered to ventilators, blasted by high-flow oxygen, sequestered inside negative pressure rooms, patients in their thousands throughout the last year have confronted death’s proximity alone.
No other disease in our lifetimes has required hospitals to be almost completely purged of visitors, even at the end of life. In place of the deathbed vigil – families clustered round the one they love, watching, waiting, clasping, holding – Covid has torn parent from child, sister from brother, husband from wife, grandparent from grandchild. We have been forced to exile the one group of people who matter more than anyone else when death draws near.
This particular cruelty of Covid disrupts a fiercely primal need. Across cultures, eras and institutional settings, what we crave in extremis is the same. Someone to cling to, preferably someone we love, their presence an antidote to fear and pain. As my patient put it: “I wanted someone to scoop me up. It really doesn’t matter if you are three or 53, it’s still the same feeling.”
In the early days of the pandemic, then, our efforts to contain the virus – to prevent it from claiming even more lives – violated everything I knew about good palliative care. We all understood the rationale for banning visitors. Rigorous infection control was obviously critical. Yet almost overnight, the hospital became a brutal world of absences and barricades – loved ones jettisoned and patients marooned in their personal Hades, alone.
Denying family members their place at the bedside of someone who is gravely unwell – “so sick they may die”, as we often phrase it – felt profoundly wrong. For me, the car park, of all places, exposed this. One day, I noticed the handful of stationary vehicles, all of them angled to face the hospital. Their occupants sat impassively, sometimes for hours, staring at the threshold they were forbidden from crossing. These watchers held vigil, strained and desperate, as near as they could possibly get to the person they loved despite the fact that they were not even in sight. I am not sure I have seen anything in the hospital more plaintive.
The preliminary findings from UK-wide research into how people have coped with the deaths of loved ones during the pandemic have shown, unsurprisingly, that Covid grief is worse than other types of grief. The research team from Cardiff and Bristol universities found that 70% of bereaved people whose loved one died from Covid had limited contact with them in the last days of life, 85% were unable to say goodbye as they would have liked and 75% experienced social isolation and loneliness. For people whose loved ones died of non-Covid illnesses such as cancer over the same period, 43% had limited contact, 39% were unable to say proper goodbyes and 63% experienced loneliness.
When I spoke to one bereaved daughter, Kathryn de Prudhoe, whose father, Tony, died of Covid in April last year, these statistics were brought painfully to life. Tony was rushed overnight into hospital, leaving his wife alone at home. “Even when they told us they were going to withdraw Dad’s life support, no one from the hospital offered us the chance to come in,” says Kathryn. “No one suggested a video call or a phone call. And we just meekly complied. We thought it was what we had to do. We were obedient and I never even thought to question it.”
Eventually, when it was clear Tony would not survive, the hospital called to say they were disconnecting him from his ventilator. Kathryn sat outside with her mother, scrupulously obeying the social-distancing rules, as they waited for him to die. “I kept thinking of the last three days when he’d been totally alone, surrounded by strangers. His lungs were filled with fluid, he’d had a bleed on the brain. It must have been physical torture and then, at some point, on top of all that, he would have known he was dying. I cannot bear to think of him there all alone,” she told me.
The only thing worse than inflicting such suffering on people like Kathryn would be for the NHS not to have learned from the pain we have so reluctantly caused. Thankfully, early on in the pandemic, staff recognised the anguish of absence for families and did all we could to alleviate it. We used mobiles and tablets to link patients and families by video. Hospitals made exceptions to draconian visitor restrictions for patients judged to be dying. The Centre for The Art of Dying Well at St Mary’s University, London, published a guide to “deathbed etiquette”, advising relatives unable to be physically with their loved ones to communicate with them virtually, trust in the care of doctors and nurses, and not let feelings of guilt take over.
And, while knowing we could never replace families, staff strove to fill that terrible void. Doctors, nurses and care workers held dying patients’ hands, recited poems, played favourite music, whispered farewell letters from those at home. One junior doctor played her violin at her patient’s bedside – his last wish before he died. In my hospital’s ICU, the nursing team were resolute. No one, but no one would die there alone – and indeed they have not. A member of staff has always sat there, offering that most vital of medicines: another human being, reaching out with love and tenderness towards one of their own.
We cannot prevent pandemics, and there remains the alarming prospect of a further wave, perhaps caused by a new strain of the current one. The next time our hospitals become overwhelmed, loved ones must be permitted the deathbed vigil. Never again, at the moment when people need to cling to each other most, can we allow an infectious disease to wrench them apart.
Rachel Clarke is a palliative care doctor and the author of Breathtaking: Inside the NHS in a Time of Pandemic
Join a Guardian Live discussion at how the NHS has performed during the pandemic, amid new government plans for another reorganisation. With Denis Campbell, Dr Rachel Clarke and Sir David Nicholson on Thursday 12 May, 7pm BST | 8pm CEST | 11am PDT | 2pm EDT. Book tickets here