About the Author: Dr. Harsha Singh is a Palliative Care Consultant and the Clinical Head, at Coimbatore Cancer Foundation (CCF). CCF strives to make a difference in people’s lives and Dr Harsha and her team therefore go the extra mile to cater to the hard to reach community right at their doorstep.
Dr. Harsha is also a visiting Consultant, Palliative Care, at PSG Hospitals Coimbatore, which offers OP / IP / Home care and Hospice services. The center also provides free home care services for the rural community.
Dr. Harsha is currently pursuing her MSc in Palliative Medicine from Cardiff University, UK, after her basic training in Palliative Care from Pallium India.
Aravanaippu is a home based palliative care initiative by the Coimbatore Cancer Foundation. Aravanaippu was born in 2019, and began its services at Karadivavi, a small village near Coimbatore, which is the birthplace of Padma Bhushan Dr Sitra Srinivasan, Founder, Coimbatore Cancer Foundation.
The project was envisioned to serve this rural community by delivering quality palliative care to those suffering from incurable illnesses and to provide basic medical care to those whose access even basic health care is limited. Since its inception, the project has been successful in improving the quality of life of atleast 150 patients and their families who suffer from incurable diseases.
With this article, I wish to share a few of the challenges we encountered during our journey and the strategies we adopted to overcome them, in the hope that they might offer guidance to those who might be facing similar challenges.
We began our services with a doctor, two staff nurses, a counsellor and a driver who also donned the role of a social worker.
The beginning of the journey was interesting and the first challenge that awaited us was in identifying patients who needed palliative care services. We leveraged the support of the student community by assembling a team of 60 MSW (Master of Social Work) students from PSG Arts and Science College, Coimbatore, to help us in conducting house-to-house survey. This exercise helped us identify 63 individuals who required palliative support.
Our next task was to initiate provisioning services to the patients who needed palliative support.
The next major challenge we encountered was the presence of stigma that people from the community associated with cancer. We realized that there were several (and a few still exist) patients and families who were reluctant to reveal their diagnosis of cancer. At one instance, one of our patients requested us to not visit their home, since our vehicle had the name ‘Coimbatore Cancer Foundation’ printed on it. She feared that the presence of our vehicle outside her home would let her neighbours know that she was suffering from cancer. We decided to address the issue of Social stigma by organizing multiple meetings with key stake holders / gatekeepers of the community to sensitise them, to get their buy-in and to request for their support to help us deliver services by making them a partner in our project. The stakeholders we met included government panchayat officials, prinicipals and teachers from educational institutions, youth groups, Self help groups, local industries and volunteers. All of these efforts paid off and with time we were able to finally consult patients at their doorsteps.
Just when we thought things were falling in place, we once again faced opposition from the community. This time it was because people felt our home visits were useless as we provided neither any medication free of cost, nor did we offer financial support. That was when we realized the community’s actual level of awareness about palliative care. We immediately decided to create awareness and educate the community about palliative care. We conducted a series of awareness programs and set up a network of volunteers, our advocates, to promote the consumption and acceptance of palliative care services. These actions gradually bore fruit and allowed for us to begin rendering palliative support for patients, right at their homes.
As time progressed, we realized that when patients from this community faced a diagnosis of a terminal disease and learnt that palliative care was the only available option of care, they began abandoning mainstream medical care and instead turned towards a variety of native medical care. While these alternate options cater to the patients’ psychological needs, patients were most often left with the burden of their physical symptoms such as pain. On probing a bit, we learnt that the limited knowledge and a poor understanding of the concept of Palliative Care was what contributed to such behavior. We therefore once again began educating people about the futility of such alternative treatment options, while also motivating them to take palliative chemotherapy or radiotherapy and other supportive care. This time, we learnt that sensitization and awareness sessions are needed to be conducted periodically during the initial years of working with a particular community to constantly reinforce the desired actions and behaviours.
Over the years we realized that provisioning care in a rural community is very different and is not as easy as it is, in comparison to provisioning care in urban communities. The variance in the literacy levels between the two populations, is a primary differentiating factor for this. Our experience allows us to comment that a minimum level of literacy in the urban communities makes it relatively easier to deliver care in these communities as people are more receptive and able to better grasp the concept of Palliative Care.
I am proud to share that Aravanaippu which was initiated in 2019, in one small village, Karadivavi, has now expanded its coverage and operations to 21 villages in 2022. In additional to offering symptom care and psychological support, we also strive towards improving the quality of life of our patients by providing them with rehabilitation aids like Walkers, Wheel chairs, assisted toilet facilities, air beds, oxygen concentrator, etc.
Till date, we have been able to render palliative care to over 150 patients, and have had the privilege to assist 45 terminally ill patients attain a meaningful and a dignified death.
Continued support to our patients’ families, even after the death of their loved one is offered via bereavement and counseling support. These regular and periodic follow ups help prevent the onset of psychological issues such as depression, suicide, post traumatic stress disorder, etc. among the families.
The team at Aravanaippu is now working towards establishing a hospice to provide 24*7 support and care, to our most vulnerable patients.
Note: This article is a republication from the Indian Association of Palliative Care’s August edition newsletter.
compared to Tamilnadu Kerala rural and urban areas have lesser stigma and better awareness thanks to pioneering work by those who made palliative are a familiar term ,home care teams still have teething issues but congrats for the uphill efforts and your success