When the pandemic first struck, I met a patient who described being rushed to the hospital as “like being thrown into Hades.” He grimaced as he struggled to convey the trauma of the faceless, masked staff looming over his bed, the mechanical beeps and human moans. Blood spurted from his arm where an exhausted physician had tried and failed, several times, to insert a tube into his vein. The other patients appeared shocked or dying. “This is where I’m going to die,” she thought to herself, “listening to people howl, looking at doctors in masks, their hands stained with blood.”
The most hellish detail, however, was not what was present, but what my patient lacked. No husband, no children, no friends by her side. Disoriented and struggling to breathe, she faced the prospect of dying from Covid completely isolated from those she loved the most. Worse still, his experience was not rare but omnipresent. On stretchers, in nursing homes, in trolleys, in hallways, tied to ventilators, exploded by high flow of oxygen, sequestered inside negative pressure rooms, thousands of patients in the last year have faced only the proximity of death. .
No other disease in our life has required hospitals to be almost completely purged of visitors, even at the end of life. Instead of the deathbed vigil (families grouped around the one they love, watching, waiting, hugging, hugging), Covid has separated father from son, sister from brother, husband from wife, grandfather from grandson. We have been forced to exile the only group of people who matter more than anyone when death draws near.
This particular cruelty of Covid alters a primal and fierce need. In all cultures, times and institutional settings, what we long for in extremis is the same. Someone to hold onto, preferably someone we love, their presence is an antidote to fear and pain. As my patient said: “I wanted someone to pick me up. It doesn’t really matter if you’re 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 taking even more lives, violated everything I knew about good palliative care. We all understood the rationale for banning visitors. Obviously, rigorous infection control was essential. Yet almost overnight, the hospital became a brutal world of absences and barricades: loved ones abandoned and patients abandoned in their personal Hades, alone.
Denying family members their place at the bedside of someone who is seriously ill – “so sick they can die,” as we often say it – felt profoundly wrong. For me, parking, of all places, exposed this. One day, I noticed the handful of vehicles stopped, all at an angle to face the hospital. Its occupants sat impassively, sometimes for hours, staring at the threshold they were forbidden to cross. These watchers stayed awake, tense and desperate, as close to the person they loved as possible even though they weren’t even in sight. I’m not sure I’ve seen anything more pitiful at the hospital.
Preliminary findings from a UK-wide investigation into how people have coped with the death of loved ones during the pandemic have unsurprisingly shown that Covid pain is worse than other types of grief. The research team from the Universities of Cardiff and Bristol found that 70% of the grieving 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. I would have liked and 75% experienced social experiences. isolation and loneliness. For people whose loved ones died from diseases not associated with Covid, such as cancer, during the same period, 43% had limited contact, 39% were unable to say goodbye properly, and 63% experienced loneliness.
When I spoke to a grieving daughter, Kathryn de Prudhoe, whose father, Tony, died of Covid in April of last year, these statistics painfully came to life. Tony was rushed to the hospital overnight, leaving his wife home alone. “Even when they told us they were going to take Dad’s life support off, no one from the hospital offered us a chance to go in,” says Kathryn. “No one suggested a video call or a phone call. And we obediently obeyed. We thought that was what we had to do. We were obedient and I never thought to question him. “
Finally, when it became clear that 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 rules of social distancing, while they waited for her to die. “I kept thinking about the last three days when I had been totally alone, surrounded by strangers. His lungs were full of fluid, he had had a hemorrhage in his 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 can’t bear to think of him there alone, ”he told me.
The only thing worse than inflicting so much suffering on people like Kathryn would be if the NHS has not learned from the pain we have so reluctantly caused. Fortunately, at the beginning of the pandemic, staff recognized the distress of the families’ absence and did everything possible to alleviate it. We use mobile phones and tablets to link patients and families by video. Hospitals made exceptions to draconian visitor restrictions for patients believed to be dying. The Center for the Art of Dying Well at St Mary’s University, London, published a guide to “deathbed etiquette”, advising family members who cannot be physically with loved ones to communicate virtually with them, trust the care of doctors and nurses, and not let feelings of guilt take hold of them .
And, knowing that we could never replace families, the staff strove to fill that terrible void. Doctors, nurses and healthcare workers held the hands of dying patients, recited poems, played their favorite music and whispered goodbye letters from those at home. A young doctor played her violin next to her patient’s bed, her last wish before she died. In the ICU of my hospital, the nursing team was determined. Nobody, but nobody would die there alone, and in fact it is not like that. A staff member has always sat there, offering the most vital of medicines: another human being, lovingly and tenderly reaching out to one of their own.
We cannot prevent pandemics and the alarming prospect of a new wave remains, perhaps caused by a new strain of the current one. The next time our hospitals are overwhelmed, loved ones must be allowed a deathbed vigil. Never again, at the time when people most need to hold on to each other, can we allow an infectious disease to tear them apart.
George is Digismak’s reported cum editor with 13 years of experience in Journalism