The Bridge

Mr. Ramu Kandasamy
M.A. (Eco), DCHM, M.A. (Socio), DLL, M.Sc. (Psycho), M.Phil (Socio)
Social Worker, CMC-Vellore

A Social worker is change agent who initiates development process towards social transformations in a community.
Let us talk about the integrated role of a social worker in the routine functioning of palliative care at CMC-Vellore. Patients attending the out-patient department are initially assessed and treated by nursing team, psychologists, and doctors. The social worker begins his role by first categorizing the patient into local or non-local to plan further care. The information from patient and relatives collected includes demographic data, family details and ensuring that they understand palliative care services in the vernacular. Additionally, the family details includes identifying main care giver (MCG) of the patient, educational status, financial status, type of family, family support of the family and educate them about other community health related issues.

One of the characteristic and salient roles of the social worker is making home visits for the local patient. The social worker visits patient’s home to know their real situation, assess the support for patient from family, source of income, other social problems etc. Information is acquired from other available sources such as local youth, students, village dhobi, president, teachers, balwadi workers, shop keepers and neighbors.

Additional Information gathered usually includes land marks, type of roof / floor, facilities available, Source of income (pension, livestock and land) which helps to understand other economic and social needs of the family. The caregivers are educated once again about treatment adherence are usually found to be more receptive than in the hospital. The details are utilized to make changes and additions to the earlier details collected. These are presented to the multi – disciplinary team who would discuss again and make necessary treatment plans.
Social workers also help them to prepare them for death. This includes motivating them to address unfinished business such as arranging marriage of children, plan for children’s education, writing of Will, property settlement, fulfilling their final wishes, when possible.

These may seem unrealistic but very much possible. Some of our patients’ wishes are mentioned below.

1. “I don’t want my final journey with music, dance and a decorated bed. The proceedings should be in silence. It should go in a vehicle from my house”. (see picture above)
2. I am proud of my teaching. Though bed bound, I teach students after their school hours. I want to teach even after my death. This was made possible by donating her body to a medical college to teach students!
3. On the day of my death, I want to for 75 kg of rice to be given to poor and rest my dead body next to my father in the burial ground. (These arrangements were facilitated).

During these visits, reasons for lack of social support patient included stigma mostly due to wrong information or lack of knowledge about cancer in the society. Some of the examples include

1. Three of our close relatives died with cancer. The villagers put a seal on this family as a ‘cancer family’.
2. We have three unmarried children in our home. Please don’t tell anybody about my diagnosis. We will lose our status in this village and they won’t respect us or exchange anything.
3. There is no need for chemotherapy. If there is any side effect like hair loss, the news will spread like wild fire and people will begin to visit me continuously.
4. How will I be able to visit my friend with a stoma bag? It is better to die rather than bear the insults out of carrying a smelly stools bag.
5. I would rather die without eating than having a NG tube and a catheter into my body. My people will assume that I am being punishment by God for my sins.

Another important aspect of palliative care is rehabilitation in palliative care. Rehabilitation aims to prevent a cycle of poverty when the breadwinner dies leaving his children, young and starving. The needs of his/her family then become even more important than their own physical symptoms.
Treatment of cancer can be costly in terms of surgery, chemo and radiation therapy which could have depleted their resources significantly. In cases when the bread winner is receiving palliative care with no other help from society, the team often decides to help them for a short period by providing them food and helping children continue education. When support is provided to such families for education, usually for at least for one or two, they can complete a short course to become a breadwinner of family and later even support the education of their sibling.

Motivating and helping young family members to support family, individualized planning, networking with donors, recipients and the educational institutions are all crucial for good outcomes rehabilitation.

Another such example of financial rehabilitation for generation of income is given below.

It is important to choose the appropriate project for income generation. For an illiterate living in a village, helping in acquiring a cow or goat from weekly cattle market is suitable. Similarly for beneficiary residing in a town, helping set up a breakfast stall or retail business at home, and sometimes acquiring skills such as tailoring for a living is possible. The contribution of the patient family is ensured to make the project sustainable.
Support when bed-bound:
As the illness progresses and patients are bed bound, palliative care team continues to visits for follow-up. During these visits, the nurses play a major role and address issues such as wound dressing, management of incontinence and colostomy bags, and use of pill boxes for illiterate patients and caregivers etc. Social worker guides them to the house using land mark and makes calls to direct the community as well.
Bereavement support:
Even after the death of the patient, the relationship continues. Usually caregivers visit within a month of death to share their feelings, express gratitude and return unused medicines. They are allowed to ventilate and necessary support is provided.

In conclusion, social workers occupy a unique position, like a bridge between patients’ family, palliative care team , social institutions like educational institutions, hospitals, social welfare board, district rehabilitation office and non – government organisation to tap benefits to support for patients’ family.
The social worker may not be the lamp or the oil that bring the flame but rather like that little stick used to lift the thread of the lamp to bring back the flickering light to bright flames, once again. Remember, we may have limited sources but it should reach the needy, if not everybody.