Today's fast moving globalize world with advanced science and technology has failed to break the iceberg in man's mind regarding cancer. It is so unfortunate that even the elite educated group has failed to understand that cancer is a non-communicable disease. The myth and stigma attached to it have unchanged in the long run of a civilized society.
Working with people with cancer brings in lots of day-to-day incidents, which are shocking and inhuman. For example Mrs Latha (name changed) was diagnosed as suffering from Osteosarcoma. She was on Chemotherapy and was planned for limb salvage surgery but unfortunately the client defaulted from the treatment. On probing it was discovered that the reason for default was her high hopes for quick recovery, short duration of treatment, false assurance from people with inadequate knowledge and wrong advices had compelled her to drift towards quakes. Eventually the client returned to the hospital with extensive progressive disease. By then she was in palliative stage. During this period her spouse was employed as a security guard for a well to do educated family and they had the privilege of an outer house. But on learning about the disease of his wife, they refused to lodge this family any more and were bent upon making them vacate. His employment was also threatened if they did not succumb to vacating.
Like Mrs Latha, a number of persons with cancer and their families have lost their homes or have failed to find a rented home. The stigma is rampant in the society despite creating awareness that it is a non-communicable disease. There are also instances wherein the joint families have broken because of the disease. The family members segregate the utensils, there are times when they even refuse to give water, eat with them or even touch them. They fear and fail to clean the wounds at home despite training them resulting in foul smell and studded with maggots.
Family fails to attend to the needs of the patient on one hand and on the other refuse to house them in a hospice fearing that the society would label them for not caring for the patient. Most often the very word hospice means “death” to them. They inquire, “Are you referring our patient to the hospice to die?” despite counseling about palliative care and the need for it.
The word cancer strikes terror in the minds of the people. Subsequently they fail to seek early treatment, eventually landing in the III and IV stage of the disease. The myths and stigma attached to the disease needs to be wiped out from the minds of our people.
People refuse to disclose the disease fearing that they would be distanced from the society. I have come across people with cancer deserted by their families and some people had said that they were not allowed to wash clothes in public wash places as one of the family members had the disease.
Since the past, volumes have been spoken about the stigma attached to the disease and some have tried to eradicate it but in vain.
Social workers have to untiringly work against this menace by creating awareness reaching each and every gully of the country. There are thousands of families who are victims of this. The disease is exploding which is clear from a press release, quote, “Cancer is a major burden of disease worldwide. Each year, tens of millions of people are diagnosed with cancer around the world, and more than half of the patients eventually die from it. In many countries, cancer ranks the second most common cause of death following cardiovascular diseases. With significant improvement in treatment and prevention of cardiovascular diseases, cancer has or will soon become the number one killer in many parts of the world. As elderly people are most susceptible to cancer and population aging continues in many countries, cancer will remain a major health problem around the globe, (Xiaomei Ma etal, 2006)”. The work done in the field is inadequate to combat the menace. It could be owing to lack of funds or due to high importance rendered to people living with HIV/AIDS.
To conclude I would like to highlight another incident, in Bangalore, Urban a person was found infested with maggots on the local site of the disease, untreated and the family approached the hospital, only to clarify that they would not contract the disease but with little intention to impart palliative care to the patient despite the professionals offering free home visits.
So as social workers let us ponder how we could reach out to these people who are crippled by the disease and the society. The disease is like getting burnt in the frying pan and the society is like the fire licking them alive. Can we extinguish this fire? Are we well equipped for it?
These patients and their families have already broken their backs from the burden of physical problems (pain, nausea, vomiting, neutropaenia, etc, eve care givers suffer from cramps, leg pain, diarrhea because of stress, etc.), Psychological problems (anxiety, anger, fear, isolation, loneliness, depression, sadness, stress, etc), Social problems (stigma, desertion from family friends, lack socialization, unemployment, poverty, disfigurement, etc), Financial problems (lack of funds for treatment, loss of employment, loss of income) and Spiritual problems (does God exist, meaning of live, theory of Karma, why me?).
As social workers how far have we tried to reach out to them? Where are we as Medical social workers in the 21st century? Are we able to organize camps and facilitate early treatment? Are we able to lead the team or at least make our presence felt like in the West? We need to rise, toil ceaselessly to create a strong footage.
Marie Martinho Nympha,
Medical Social Worker, Vydehi institute of Oncology, White Field, Bangalore
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