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Silent Pandemic: The Toll COVID-19, Healthcare Are Exacting From Patients’ Kin

Silent Pandemic: The Toll COVID-19, Healthcare Are Exacting From Patients’ Kin

Relatives mourn a man who died due to COVID-19, at a crematorium in New Delhi, June 2020. Photo: Reuters/Adnan Abidi.

Kolkata: A macabre drama played out in front of the Bangaon Subdivisional Hospital in North 24 Parganas district, West Bengal, in the late evening of July 26, shaking everyone present to the core. Madhab Narayan Dutta, 65, and his wife Alpana Dutta stood surrounded by some twenty people.

Madhab had arrived at the hospital earlier in the day complaining of breathlessness. Doctors referred him to a government facility in Kolkata, some 100 km away. Luckily, an ambulance was available. But Madhab couldn’t walk the few steps from the hospital’s gate to the vehicle and collapsed on the ground. A crowd watched with bated breath. Some began recording his plight on their phones. Alpana did her best to lift her husband up. When she couldn’t, she pleaded with everyone present, but no one came forward.

There was a man in PPE. She begged him for help. He didn’t respond. A voice from the crowd said, “Dada, muster all your mental strength and get into the ambulance.” Wise words – but the stocky fellow couldn’t stand up. Some thirty minutes later, he breathed his last, his head resting on his wife’s lap. His COVID-19 test result was still awaited.

Madhab’s ordeal ended right there – but Alpana Dutta has to live the rest of her life knowing her husband died in front of her eyes because she couldn’t manage to put him into the waiting ambulance.

Various observers, including journalists and health workers, have documented our helplessness in the face of many realities of the pandemic over the last four months. But what many have failed to see is what patients’ relatives go through. These people have waged an almost unwinnable battle against an invisible enemy – which is the virus as much as confusion, uncertainty and stigma.

Alpana Dutta’s case is an extreme example. In more regular cases of hospitalisation or home quarantine, patients’ next of kin have suffered uniquely as well. In June, the father, mother and elder brother of a 10-year-old girl from Baruipur, on the southern limits of Kolkata, tested positive for COVID-19 one by one.

A relative, an assistant professor named Dibakar Sarkar, told The Wire Science what the little girl went through. “Her father was admitted to a private hospital. Her mother and brother were lodged in a quarantine centre. Since she couldn’t be left alone, the block medical officer, out of his sheer goodwill, arranged for her to stay in a local non-COVID-19 hospital campus. But at night, as soon as word got out, some locals raided the hospital and opposed her stay there since her family members had tested positive. The police had to intervene. They dropped her home. She stayed there alone. She only had a vague idea about what was happening. Her relatives couldn’t come because of the lockdown. It was terrible for her.”

“We had no information about the girl’s father,” Sarkar continued, “after we got him admitted to the hospital. I spent entire days at the hospital. But naturally, I couldn’t go anywhere near the COVID-19 ward, nor was there any communication. We didn’t even know which doctor was treating him. One day, we got a call that the patient’s condition had turned serious. Then, for a couple of days, there was total silence again from the other side. Luckily, he came through.”

A family member suffering from any kind of ailment spells a difficult time for their closest relatives. However, COVID-19 has been especially dreadful. Being infected with this disease precludes human contact – which lies at the heart of any kind of caregiving. A pall of uncertainty hangs around the hospital and all treatment procedures. The lockdown has limited freedom of movement and reduced access to various services. And the social stigma associated with being a “transmitter” has been debilitating.

While most patients do recover from the disease, their family members often suffer in silence, boycotted by friends and neighbours.

Corporate executive and dancer Srimanti Ray’s mother tested positive a couple of weeks ago. Since her symptoms were mild, doctors suggested home quarantine. As she recuperated, Ray had a tough time. “When I heard her test result, I was at my in-laws’. As a spontaneous reaction I wanted to rush to her side. But that was not possible,” she told The Wire Science.

A person in her mother’s neighbourhood “who tried to help” couldn’t because residents of other apartments in the area protested. “I have never felt so undone! She is now doing fine, but for 15 days I did not sleep or eat properly, and couldn’t concentrate on my work. It was very, very tough.”

The Union health ministry and various state governments have launched helplines for COVID-19 patients and their kin, offering services ranging from identifying vacancies in hospitals nearby to providing mental-health support. Many state governments have, at least on paper, mandated that the next of kin of a deceased COVID-19 patient is allowed to see the latter before cremation. One health ministry document also specifies some ways to handle emotional issues during the pandemic.

Indeed, there is a pronounced psychological dimension to the whole issue – but the treatment process is opaque in certain ways such that mental health and support gets sidelined.

Dr Arghya Pal, of the psychiatry department at the Swami Rama Himalayan University, Dehradun, thinks more transparency in healthcare can alleviate suffering to a significant extent.

There are many “mental health implications of a family member of a COVID-19 patient. Once a person is diagnosed, the subsequent process is shrouded in uncertainty,” he said. “From the perspective of a mental health professional, it is very difficult to anticipate the range of symptoms one can experience – but it’s evident that if there is more transparency in the healthcare process, the mental health of all family members will benefit.”

The West Bengal Commission for Protection of Child Rights launched a helpline in March through which children in distress could avail counselling from a team of 17 experts during the lockdown. Last month, Kerala launched a ‘tele-counselling service’ staffed by student volunteers to talk to school-goers who were distressed because they couldn’t go to school.

However, Dr Pal also said family members need to understand that, given the unprecedented nature of the situation, they shouldn’t expect to be able to interfere with patient management too much.

“It won’t be possible for any institution to allow bedside access to family members in COVID-19 cases,” he said. “This is probably also a lesson for healthcare providers – we can learn that if we upgrade our services, improve transparency and use [different communication] strategies to our benefit, we can cut down on the immense anxiety that the family members face.”

Dr Niladri Konar is an acute medicine expert at St George’s Hospital in London, and has been attending to COVID-19 patients. He recalled that at one point, the hospital where he works had around 550 COVID-19 patients at once.

“The hospital allowed patients’ relatives inside only in two cases – if the patient was dying, and in case they were pregnant women who needed to deliver. It was compulsory for the doctors and nurses to talk to the family of all other patients over phone every day,” he said. “The administration appealed to everyone to donate iPads or tablets if they had spares. They put up posters. We received a number of devices. Using them, we arranged video conferences for willing patients every day.”

Dr Konar and his colleagues also benefit from the presence of grief counsellors in every hospital. These counsellors are either trained psychologists or palliative care experts who deal with patients’ relatives during hospitalisation. “They are there all round the year. But for the last four months they have been extremely busy,” he said. “When a serious patient comes to us, we connect her relatives to the counsellors. They help family members deal with their anxiety and in case of death, their bereavement.”

He added that he didn’t know of many hospitals in India that had this facility. “Maybe the top-end ones do. This is something hospital administrators should think of seriously.”

Bereaved families also find closure in their member’s last rites. However, there have been incidents in India where relatives of deceased patients haven’t had an opportunity to see their loved ones one last time as a hospital or civic body completed the cremation. Sometimes, when patients leave home is the last time relatives see them. Relatives are often forced to receive updates over frantic phone calls with hospital staff and their own movement may be restricted if they have to be quarantined themselves.

Dr Pal acknowledged that this part of care is very wanting. “We have to help family members mourn the loss. They may be guilt stricken and may make difficult demands. Providing supportive psychotherapy can be very helpful,” he said. “We have to reinforce the point that they are doing society a great service by adopting such measures.”

Indradeep Bhattacharyya teaches literature and is a former journalist based in Kolkata.

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