I would like to share with you briefly, the context of our work in palliative care in rural North India through Emmanuel Hospital Association as a whole, and in particular at Chinchpada Christian Hospital where I am located, particularly exploring how the COVID-19 pandemic has affected the delivery of palliative care in the community care setting in our rural area.
Emmanuel Hospital Association is a nongovernment organisation with 19 hospital units and 30 community health projects with a vision of taking quality health care to the underserved rural areas in North India. Home-based palliative care was started in EHA in the year 2010, and there are currently 10 active palliative care units across the organisation.
Our typical palliative care teams consist of 3-4 members, and are nurse or social worker-led, with support and supervision by a doctor trained in palliative care. Here are some images from a recent visit to four of our palliative care units in Uttar Pradesh. I was moved to see the excellent work that they are carrying out faithfully in some extremely challenging contexts.
At Chinchpada, we began the palliative home care program in 2016, and have since cared for about 470 patients with life-limiting illnesses, of which 75 are currently receiving care while the rest have passed on. The Covid-19 pandemic has highlighted many of the pre-existing challenges to flourishing for people living in this remote rural area, and also brought new ones, particularly for palliative care delivery.
However, I also feel that the human experience of pain, suffering and grief that was collectively shared by our world during the pandemic has affirmed the immense value of palliative care, and the holistic, relational approach to caring that it embodies.
Some of the pre-existing challenges from the perspective of the community include illiteracy, poverty, dependence on ancient, often harmful indigenous treatments, mistrust of modern medicine that causes needless deaths, alcoholism, poor access to good quality secondary and tertiary level health care, lack of access to optimal management of treatable conditions that lead to death, like cancer, TB and Sickle cell disease which are rampant in this tribal area.
Challenges from the perspective of the hospital include severe resource-limitation as we serve a population where 72% live below the poverty line; difficulty in getting qualified professionals who would be willing to live and work in such places, multi-tasking by the few available hands, remoteness of our location that makes availability of supplies and services difficult, meeting the legal requirements for various hospital licences.
There is a pressing need to constantly redefine “quality” to match the realities of the desperately broken world of our patients. This is crucial, and must be learned, in order to remain relevant to the poor who we desire to serve. The stretch on our ethical compasses in doing this can be extremely challenging, and it is a humbling journey.
The particular challenges highlighted by the pandemic included hunger; loss of livelihoods; lockdowns making access to health care difficult; and supplies of crucial drugs being cut off, including a difficult 4 week period where we had no Morphine. In the light of the local travel restrictions, we got special permission from district authorities for our ambulance to travel to villages so that we could continue our palliative care services.
As the team travelled to the homes of patients during the first wave of the pandemic, they saw first-hand, the devastation caused by the effects of the pandemic. Migrant workers returned home to their villages by the hundreds on foot, many of them forced to live out their two-week quarantine period outside their villages out in the fields because the villagers were afraid that they would bring the virus in with them. Hungry families with gaunt faces exhausted from their long journeys were everywhere.
Food rations were provided for about 700 vulnerable families for a period of 3 months, and this support continues for very vulnerable families even now. This support was distributed by the palliative care team, who through their pre-existing networks with village heads and local people of influence, were able to administer this support on the ground efficiently, justly, and with transparency. One of the village headmen said of the palliative care team, “you are like angels of hope, bringing food, love, comfort and hope to our people in their time of need.”
Over the four years that the palliative care service at Chinchpada existed, the team had invested deeply in relationships in the community, growing in concentric circles around the patient with palliative care needs who was placed at the centre. Through regular sensitisation and awareness among the various stake-holders in the community, palliative care which was previously unheard of in this region, is now a frequently used term with many referrals to the team from the community. The training of volunteers has made it possible to widen the reach of basic palliative care to distant areas delivered hands-on by them, with remote technical support and encouragement from the team, and the assured supply of appropriate pain medication including Morphine.
During the Covid pandemic, these relationships of trust were a great asset. In a milieu of fear, misinformation and confusion, messages regarding dealing with Covid-19 were received more willingly from the team. Despite the team being associated with the hospital which catered to Covid patients, a majority of the people in the communities welcomed their visits and appreciated their willingness to continue to associate with them, providing much-needed multidimensional care. The example of the palliative care team in continuing to respond to the needs around them gave courage to many other people of goodwill in the communities who joined hands in their efforts. These friendships are crucial to moving us forward towards our goal of access to palliative care for all the precious people in our impoverished region.
Although the hospital provided covid care during the first wave, the numbers were relatively low, with a maximum of 12 patients admitted at any given time, among our available 50 beds so that we were able to provide covid as well as non-covid services. However, during the second wave, we were engulfed by a tsunami of patients in a matter of days. Oxygen pipelines were installed overnight through uncanny foresight, and fast disappearing oxygen concentrators were procured from the markets at lightning speed. Over 48 hours, every available corner of the hospital was occupied by a Covid patient on a bed (or something to lie on, including benches and boxes with mats on them) so that instead of our usual capacity of 50 beds, we had 84 Covid patients admitted with us, and an additional 6 on trolleys outside in the porch, awaited the availability of a bed. Countless people arrived gasping at our gates and breathed their last even before we could attend to them.
We treated 740 moderate to critical patients with Covid-19, each of our four available ventilators being used to cycle between two to three patients, sometimes two being ventilated simultaneously on a single ventilator.
With this unprecedented workload, our small staff team of 7 doctors and 18 nurses was overwhelmed. At this point, every available hand on campus was brought in to respond to this crisis in various ways. The palliative team once again rose to the challenge, working tirelessly in the wards with various tasks. These included monitoring and reporting blood sugars for patients on steroids on a shared google sheet; checking and rechecking saturations after alterations in oxygen flow rates according to the set protocol; carrying food and supplies from the isolation ward door to patients on their beds; feeding and toileting of patients who were too sick to care for themselves in the absence of relatives inside isolation; facilitating communication between patients and their families over phones; and encouraging, counselling and supporting families who were struggling. Palliative care was provided to those who warranted this where time permitted, with a special focus on symptom relief, facilitating goodbyes and providing support to grieving families.
We lost 79 patients over a period of 6 weeks. This image of our 29-year-old patient whose young wife stood weeping by his bed accompanied by the palliative care team as she held his hand and thanked him for being a loving husband to her and a good father to her two small children, will remain in our memories for a long time. She was enabled by the team, later, to set up a small shop as a livelihood initiative, through which she now supports her family. Several other families who lost their breadwinners were helped like-wise.
As the second wave ebbed, the team returned to the community, participating with bereaved families in their grief and helping them to process their loss, while they facilitated practical support in all possible ways through connections within the community. Core palliative care work was resumed, and we found that we had lost a much higher number of our palliative care patients during the second wave, than usual.
Over the period of the pandemic, we also started a hospital-based palliative care arm, to include those with palliative care needs who lived too far away for regular home-based care. Through phone calls by assigned members of the team and hands on care with home visits by local volunteers trained by us, we are able to include more people in this circle of intentional, multidimensional care. This initiative has also provided opportunities for increasing members of the hospital staff being sensitised, trained, and empowered to provide the person-centred holistic care that is the hallmark of palliative care.
When we looked at what most of our people were dying off, we realised that Tuberculosis and Sickle Cell Disease crises along with alcohol related liver failure were among the top three killers. Over the past two years, 15% of our 420 patients with Tuberculosis have died. Additionally, children and adults with Sickle Cell disease experience episodes of excruciating pain requiring opioids, and die prematurely. We expanded our scope of engagement with the community through palliative care, taking the same unique person centred approach of palliative care, to focus on these three major illnesses that are causing death in our community.
This engagement capitalises on the strengths of our strong community networks through palliative care; the beauty of the holistic person centred approach; and the competencies of the hospital in providing excellent care for these life- limiting diseases through partnerships with government programs.
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Article written by: Ashita Singh
MD (Internal Medicine), MA (Bioethics), NFPM (National Fellowship in Palliative Medicine), FGID (Fellowship in General Infectious Diseases)
Head, EHA Palliative Care Service,
Physician, Chinchpada Christian Hospital,