Looking after my ill mother as health services became tough to access during the pandemic

People wait in a queue to enter the OPD at the district hospital at Sector 30 in Noida on 12 October 2020. Sunil Ghosh / Hindustan Times
29 July, 2021

During the early months of 2021, my 84-year-old mother fell severely ill. She had a history of mild stroke and geriatric ailments for many years. But this time was different. She had a fall that set her health back drastically and it happened in the middle of the worst of the coronavirus pandemic in India. 

The second wave of the pandemic in the country, in April, has been one of the most devastating anywhere in the world. It crossed its peak in mid-May. Through this time, I was trying to find various treatments for my mother who had escaped COVID-19 but whose health was deteriorating fast. 

Like me, many people struggled to get proper medical care for their loved ones who had non-COVID ailments in these months. My mother had been staying at a home for aged people in Kolkata for the past three years. She had a fall early on the morning of 8 February that resulted in severe injuries on her face. She developed haematomas—collections of blood outside blood vessels caused by injury—with black patches and swelling under her eyes, and had cuts and bruises on her cheeks. Since I lived in Delhi, my cousin in Kolkata, who had been checking in on her regularly, decided to admit her to hospital. She was treated at this hospital for nearly three weeks, most of it in the intensive care unit. The doctors found that she had a medium-sized tumour on her neck, next to the thyroid gland. They decided not to touch it—not even conduct a fine needle biopsy to assess the nature of the tumour—given her precarious condition. She picked up a stubborn urinary tract infection. We did not know whether this happened at the home or the hospital. While at the hospital, she started showing signs of dementia and would often be in a state of disorientation or confusion. Her demeanour would become like that of a child at times. 

When she was discharged early March, she needed to be fitted with a catheter to pass urine. The urinary tract infection flared again within ten days of leaving hospital. She went back into intensive care at the hospital. It was around this time that the news of quickly rising COVID-19 cases in states like Maharashtra started making headlines. 

During her second stay at the hospital, doctors brought her infection under control with antibiotics, but there was no major improvement of her general condition. She was discharged again on 8 April but the doctors’ prognosis was not encouraging. They told us that her body was shutting down fast and medically nothing could be done anymore. They gave her a few weeks at most, and asked us to take her home to the family and give her palliative care as best as we could. 

This is when our journey of caring and treating a critical patient at home began. All of India, as well as the city of Kolkata, was reeling under the tsunami of COVID-19 infections by the time my mother came home from the hospital. I had finished getting my second dose of the COVID-19 vaccine and flew from Delhi to Kolkata on 19 April, the night before the national capital was placed under a stringent lockdown. 

My mother’s condition seemed to stabilise a little after I arrived. However, within weeks, we found out that her blood haemoglobin count had dropped below the medically acceptable range. She needed immediate blood transfusion. We could not take her to a hospital in the middle of the raging pandemic and so we needed to arrange a transfusion supervised by a doctor at home. This was easier said than done. 

After asking about a dozen friends and acquaintances, I found out about a few healthcare agencies in Kolkata that arranged healthcare facilities at home. Most offered to set up hospital beds, oxygen and other consumables, and even nursing services. But I found only one agency that could arrange a blood transfusion at home. The agency’s regular mode of operation for a blood transfusion was to send a doctor first to assess a patient’s condition who would then provide the requisition for blood. However, since it was the middle of the second wave, the agency insisted that my mother first get tested for COVID-19. It would send a doctor if she tested negative. I called a technician from a private pathology lab to collect her swab. It took three days before we got her COVID-19 negative report.

The following day the doctor from the agency came home. She decided that my mother needed two bottles of blood, each bottle having a capacity of 300 millilitre, after assessing her condition. The transfusions would have to be carried out over two consecutive days as her heart was too weak to take both units on the same day. The doctor gave us a requisition form that we could take to a blood bank to get the blood. 

Government blood banks in Kolkata would not give us any blood citing the reason that the transfusion was not being done at a hospital. We visited three private blood banks and all of them informed us that they had no supply since they could not conduct blood collection camps due to the pandemic and the lockdown. Our only option was to find two donors ourselves. Luckily, my mother’s blood group is not uncommon. We found two fit donors by spreading the word in our friends’ circles. They came to a private blood bank to donate one bottle each, which we took back home after the approximately six hours it took to collect and process the blood. The agency sent a doctor and a nurse for two consecutive days to administer the transfusion that went off smoothly. 

I was able to navigate the process of finding blood for my mother better than most people because. Many years ago, when I was in college, I was actively involved with campaigns for voluntary blood donation. During the second wave, when most blood banks had run dry, only patients’ families who found donors of the same blood type could get blood. In the two days that I spent organising blood for my mother’s transfusion, I saw several people at the blood banks carrying requisition forms from hospitals but the blood banks had no stock. I heard people who had no way of finding blood donors pleading with the workers at the blood banks who could not help them. Many people left empty handed. I did not know how many managed to find the blood they needed. 

About a month after the transfusion, my mother needed a minor surgical intervention to manage a bedsore that she developed from being confined to her bed while in hospital. I sought help from a doctor friend who arranged for one of her friends to come and do the procedure at home. Then my mother needed to see a psychiatrist for her dementia. Again, a friend of nearly 40 years and now one of the most senior psychiatrists in the city, came home to assess my mother and prescribe medication. My circumstances and connections had allowed me to get the medical care my mother needed. These came from my social privilege and relationships that I had developed since my college days and from nearly two decades of being a journalist in the city. I extensively reported on public health and conditions of the government-run hospitals in Kolkata and in West Bengal from 1981 to 1998. Those assignments gave me the opportunity to be friends with a large number of young junior doctors who were now senior specialists. Some of these same doctors agreed to visit my mother and helped us in her care.

Ameena Rahman, who is 84 years old, had a fall after which her health deteriorated. Her family struggled to get her the medical care she needed during the second nationwide COVID-19 wave in India. Courtesy Nazes Afroz

I wondered how people with other ailments, particularly with age-related problems, and who did not have the access and privilege that I had, coped when the whole country was struggling to find aid to deal with COVID-19. The lack of oxygen supply at hospitals, people dying at hospital car parks, long queues in front of crematoria and cemeteries, dumped dead bodies in rivers or dead bodies found in shallow graves understandably dominated all conversations about healthcare. 

A friend who had lung cancer and went to a hospital for his chemotherapy died a few weeks after contracting COVID-19. People like him who had life-threatening illnesses faced double-edged swords. They risked picking up the lethal coronavirus if they went to get treatment at hospitals or let their conditions deteriorate and become fatal if they did not.  

I spoke to many people who were delaying their medical treatments. My cousin’s mother-in-law needed a cataract surgery but they had been putting off since last autumn. This meant her eye sight had been deteriorating steadily. Her family was not sure when she would be able to have the surgery safely. Another friend had a tooth infection but managed his pain with pills and antibiotics for more than two months. Finally, he had to visit a dentist. A couple of days later he was detected with COVID-19. He was fully vaccinated and got through it with mild symptoms. A dentist friend told me that she had to close her practice as patients were not coming. 

With these accounts from my immediate circle, I started to wonder how people with medical needs other than COVID infections managing. How were childbirths taking place during the pandemic? Were women visiting hospitals or doctors’ clinics for the pre-natal check-ups? Did hospital births go down? Were women opting for home deliveries and did they get help of trained midwives? 

A recent report by the World Health Organization and UNICEF paints a gloomy picture for childhood vaccination. Globally, 23 million children missed out on their first doses of DPT1—the combined vaccine against diphtheria, typhoid and pertussis or whooping cough—due to the pandemic in 2020. The number was 3.7 million more than the number of children who usually miss out on this routine childhood immunisation. India topped the list of countries with the largest number of children not receiving the DPT1 vaccine dose 3.03 million in 2020 as opposed to 1.40 million in 2019. The report said that a funding shortfall was one of the factors for this increase. 

What happened to people with malaria, tuberculosis, dengue, typhoid and other enteric diseases? A government report claimed 116 districts in India reported no malaria cases in 2020. Could tests be done on all the suspected cases? Were these diseases contained or simply not reported? Given all the serious doubts and controversies about COVID data, was it not fair to question this data too? 

Until the 1990s, India’s system of basic medical treatment in urban centres was centred around networks of local general practitioners, who were affordable to the middle class, who knew their patients well and visited their homes, if needed. They would prescribe medication and even perform minor surgeries at their clinics or at home. These GPs did not charge registration fees at their clinics. The doctors’ fees were based on their qualification and expertise. The norm was that follow-up visits would cost half the first visit. Often those doctors would waive fees or reduce it substantially if the patient had no or little financial means. This network was the mainstay of the urban community-level medical service. People went to government hospitals or private nursing homes only for specialised and supervised treatments and even that depended on their means. If we were to manage my mother’s condition prior to 1990s, we would have called on these local GPs. 

The old network of GPs has almost but vanished in a matter of a couple of decades. In the new healthcare ecosystem, private hospitals and polyclinics have become substantially larger, and charge registration fees and consultation fees that factor in their hefty overheads, for even the most minor treatment. 

India has always had high out-of-pocket expenditure for medical treatment. In 2018, out-of-pocket expenditure accountedfor nearly 63 percent of medical costs while the world average was just above 18 percent. Even the group of countries that the World Bank categorises as having “fragile and conflict affect situations” fared better than India with an average out-of-pocket expenditure at 55 percent. The rich in India usually do not avail the public health system now, just as they did not rely on local GPs earlier. The middle class and the poor have been relegated to using this overburdened system. While people who can afford it pay for private medical insurance to deal with escalating medical costs, the lower-middle class and the poor in urban and rural India have been left with no such protection as they cannot afford the high premiums. The federal government and a few states have publicly-funded medical insurance schemes that are massively inadequate for treatments at private hospitals. 

India has witnessed a near stagnant public expenditure in health in the last one decade: 1.1 percent of GDP in 2010–2011 to 1.4 percent in 2019–2020—making it one of the lowest in the world. Factoring in the inflation and population increase, government hospitals have been stretched to their limits and cannot cater to the more than 85 percent of poor Indians who do not have private health insurance. Even in non-pandemic times, most people find getting medical treatment a most daunting task. What has happened to them over the past year? 

My mother will never be out of the woods. She is completely bedridden with a collapsing body function. I know that she will need palliative care for a long time—maybe months, possibly a few years. Doctors will need to examine her from time to time. She will need blood transfusions or even minor surgical interventions. I can get my mother the care she needs through my connections and resources. Millions of Indians in big cities, small towns and villages who do not have the access that I do will simply lose family members or watch them suffer with no care.