The World Social Work day is a day, especially ear marked in a year, to celebrate social workers across the globe to appreciate and acknowledge their crucial and phenomenal contribution to mankind. The International Federation of Social Workers (www.ifsw.org) declared ‘Ubuntu: I am Because We Are’ as the theme for 2021 as it highlights the role of a social worker in creating the interconnectedness that exist between people and their environments. It is also the first theme of the 2020 to 2030 Global Agenda for Social Work and Social Development.
Social workers hold a pivotal role in palliative care teams as they usually provide the vital link between the clinical teams, the society and the patient and their families.
We present to you below, the thoughts, experiences and stories shared by two of our very own social workers.
The Interconnectedness Of Life And Death
– Ms Aneka Paul, Social Worker and Trustee, Golden Butterflies, Chennai
World Social Work Day 2021 was commemorated on March 16th, with the theme: “Ubuntu: I am Because We are – Strengthening Social Solidarity and Global Connectedness” (2020-2022). This is also the first theme of a decade-long, broader agenda of “Co-building inclusive social transformation”. The concept of “Ubuntu” implies that the survival of one is dependent on the existence of all and vice versa, highlighting the interconnectedness of humankind with each other and their environment. The profession of Social Work itself shares this philosophy, while striving for “social change, social development, social cohesion, and the empowerment and liberation of people” (International Federation of Social Workers, 2014).
As we celebrated World Social Work Day 2021, I reflected on what it meant to be a Social Worker in the Palliative Care sector in India. At first glance, dealing with death and dying on a daily basis may seem like a depressing job involving equally morose people. But upon entering this field, I realized that folks here are the ones who have actually understood what it means to live to the fullest, with zest! Palliative Care Workers are constantly learning – their teachers being the seriously-ill patients and families they care for.
I can think of no more apt an application of the principles of Social Work than in Palliative Care. Social Work believes in the dignity and worth of all human beings, while Palliative Care upholds the dignity of individuals in death and beyond into bereavement. Both respect diversity and strive to provide their services irrespective of the recipient’s age, gender, class, caste, religious or political beliefs, etc. Both promote autonomy, privacy and confidentiality of the individual patient, and adopt a “whole person” approach to care, encompassing the physical, psychological, social and spiritual dimensions.
Social Workers in the field of Palliative Care bring with them their passion and devotion to the cause, integrity, determination to improve matters for the better of all concerned, and an abiding dedication and self-motivation to continue in this role in the face of all challenges. As part of multi-disciplinary teams, they are equipped to provide comfort, counselling, and communication, with utmost care and compassion. They educate families and communities to overcome stigma associated with serious illnesses, link patients and families in need to appropriate resources, and even address existential questions that a terminal illness raises. Being a Social Worker in Palliative Care is a fulfilling and enriching experience!
Gautam’s last wish!
– Ms Renuka Ananth, Social Worker, Karunashraya, Bengaluru
Social Workers are those professionals who assist individuals to overcome various obstacles in one’s life, be it emotional, psychological, social etc. and help build resilience in them to facilitate their integration back into the mainstream society. The primary goal of a social worker is to therefore enhance the social functioning of an individual by enabling them to perform and fulfill one’s social roles, by themselves.
Social workers not only play a role in the lives of those individuals who wish to be rehabilitated back into the mainstream society, but they also provide support, guidance and direction to those who find themselves at cross roads while having to make difficult decisions during challenging times. Their intervention is magnified in the field of Palliative Care. A palliative care social worker not only conducts psychosocial assessments but also acts as a bridge between the patient, the family and the clinical team. This is very evident in the below case:
Gautam, a 30 year old young man felt unwell for quite some time. He visited several clinics in his remote village in West Bengal. Yet, nothing seemed to help. Heeding to the advice of several of his well wishers, he finally decided to take the long journey to visit the Kidwai Institute of Oncology, the Regional Cancer Center at Bengaluru for a “proper” diagnosis. He was devastated to learn that he was diagnosed with Anaplastic Oligodendroglioma (Head and Neck Cancer). To compound his misery, he was now burdened with several time sensitive decisions that he had to take. Eg. Where will he stay with his mother? How will they manage staying in a “foreign” land without knowing the local language (or any other language for that matter) except for a dialect of Bangla spoken only in his village?
While navigating these issues, he underwent 6 cycles of chemotherapy. It helped him for a while. Unfortunately, the disease progressed quickly, resulting in him being referred to palliative care.
This is where I intervened and met him. Our initial interactions revolved around developing a relationship based on trust so that I could slowly probe into understanding the various difficulties he was grappling with. A thorough assessment revealed that I firstly needed to find financial aide to support his palliative care treatment. Support was also need for food and clothing; both, for himself and his mother. For this, I liaised with various volunteer groups who took care of these needs, both financial and non-financial. In parallel, I also began counseling his mother about what a hospice was and how getting admitted into one was not only the best choice for her son’s treatment but to also reduce their dependency on external funds for treatment and related things. My subsequent interactions lead me to learn that Gautam craved to return to his village as he longed to be with his friends, family and relatives for the little time that he had remaining. However, he was extremely fragile and physically unfit to take the long train journey back home.
Soon, I connected Gautam and his mother to Karunashraya, the hospice, so that he could be sufficiently cared for and nurtured, to be stable enough to embark on the journey home. They took my advice and got admitted to the hospice. While the rest of my team at Karunashraya focused on nurturing him, my next goal was to ensure that all the necessary arrangements were done for his journey. This involved organizing the commute from our hospice to the railway station, completing the necessary paper work to ensure that Gautam and his mother’s train tickets were availed at concessional rates, actually booking the train tickets and ensuring that food, medicines and their other needs were taken care of during the journey so that they would have a hassle free journey back home.
The intention of the entire team at Karunashraya was to try and fulfill Gautam’s last wish of going back home. We finally bid adieu to Gautam and his mother, who had by then, become one of us during their time at the hospice. Gautam and his mother made it back home, safely.
Within a few days, I learnt that he passed away in peace and that his body was cremated in the same soil that he was born in. Just as he wished.
It is important to understand the concepts of quality of life and dignity even during the last few days of someone’s life. As a social worker, it is important to pay attention to even the minutest of details while comprehending a patient’s concerns so that we can provide the best quality of life possible and assure dignity till one’s end. It is also important to remember that while we provide care and enable patients to be satisfied, we must not forget the family. It is crucial to ensure that they are also satisfied and at peace. In this case, Gautam’s mother was at peace and immensely satisfied that her son’s last wish was honoured.
This is the power and the difference that a social worker can bring to people, who are adding life to their days…