An estimated 1 million new cases of cancer occur each year in India, with over 80% presenting at the point at which the disease is incurable and/or has spread throughout the body, known as metastatic cancer.
Around 60% of patients will already be in significant pain, and just under half will be experiencing excruciating, unbearable pain. The need for palliative care in India is huge.
With a population of 14 million, 22% of people live below the poverty line (BPL) in Kolkata and a large proportion do not have the means to access even basic healthcare. With only a handful of outpatient palliative care clinics, even fewer are able to access essential pain medication and palliative care services.
I (H.F.) came from London, UK, in August 2014 to work for a year as part of my general practitioner (GP) training, at the Saroj Gupta Cancer Centre and Research Institute (SGCC&RI), in Kolkata, West Bengal. I also ran a small clinic once a week in the centre of Kolkata for the Eastern India Palliative Care (EIPC) project.
This narratives that follow draw on five case studies to illustrate the need for and efficacy of palliative care. Names have been changed throughout to protect identity. The first two sections describe the experience of severe pain from cancer, the effectiveness of morphine in relieving cancer pain, and the difficulties encountered in prescribing this essential medication.
The third section introduces Rekha-di (patient coordinator at SGCC&RI) and documents how her compassion towards patients and families has great therapeutic value, alleviating distress.
Miss Dutta was diagnosed with sarcoma (bone cancer) when she was just 28 years old. Five years on, the cancer had spread throughout her body, with secondary deposits in her bones, lungs, and spinal cord. Her legs were paralyzed; she was no longer able to get out of bed, and she required a urinary catheter.
The symptoms that were most distressing for her were the pain in her chest and intermittent breathlessness that worsened towards the end of her life – she had very little lung function left due to the cancer.
She required an increasing dose of morphine to alleviate the pain and the breathlessness, but thankfully it worked well for her. Well enough to ensure she was comfortable, mostly pain-free and able to talk with us and more importantly spend time with her family in the last few weeks and days of her life.
Without morphine it is difficult to know how Miss Dutta or her family would have coped with the last stages of her debilitating illness.
Mrs Thakur presented to a government hospital with an 8-cm lump in her breast. The doctor she saw told her the cancer was too advanced and sent her home with a prescription of paracetamol, saying: “there is nothing more we can do.” She was dying in excruciating pain on the concrete floor of her home.
Her husband had picked up a pamphlet from one of the many information kiosks run by Eastern India Palliative Care (EIPC) in the local government hospitals.
The aim of the information kiosks is to offer the patients information about palliative care and help them access medical and social help, including referrals to the EIPC clinics.
Mr Thakur had seen a kiosk in a government hospital and had asked about palliative care for his wife. He came to see me at the Kolkata clinic, saying his wife could not come because she was in too much pain. She could not move, and she was not eating or drinking.
I gave him some painkillers from the clinic, but I knew that we really needed to see her. The EIPC team managed to arrange a home visit with Dr Dam, a consultant anaesthetist and palliative care physician, the next week, and I went along with him.
This family was incredibly poor. They – unlike many others – had somewhere to live, but it was a “household industry” – a single room out of which a business is run, which also serves as a family home. This particular house was an old bookbinding business. There was a huge press in the middle of the room that took up most of the space, and Mrs Thakur was lying on a concrete floor that was her bed.
She was only 30 years old, suffering from advanced breast cancer, with a gaping wound where her left breast should have been. There was a terrible smell coming from the wound. She was in so much pain that she could not sit up, sleep, eat, or drink. Dr Dam gave her an injection of a painkiller, anti-emetic, and sedatives, which he uses as a substitute for morphine.
We weren’t able to give her morphine, which was really frustrating. Although safe, cheap, and effective, because of obstructive licensing laws, morphine is very difficult to access in West Bengal and most of the rest of India.
Some hospitals have it, such as SGCC&RI, but when you are practicing independently, the licensing is very complicated. Dr Dam gave Mrs. Thakur the injection, cleaned and dressed her wound, and spoke to her husband. The couple’s 9-year-old daughter sat in the corner watching us care for her mother.
These kinds of situations are incredibly sad. Before we arrived, Mrs Thakur had not taken any pain relief. Seeing that level of suffering is really shocking. The United Kingdom has the National Health Service that is currently free to all. As a result, you would not see a young woman dying of cancer without any support. Cases such as this illustrate why palliative care and access to morphine is so important.
Rekha-di is the patient coordinator for the palliative care team at SGCC&RI. Having spent most of her working life in a bank, she joined the team as a volunteer the year after her husband died of cancer in this hospital. She was such a committed volunteer that the director created a post for her and insisted she be paid. Although she has no medical background, her input with patients and families is invaluable because of the huge amount of compassion she shows.
I saw a 26-year-old patient with lymphoma with Rekha and my consultant. It was the first time any of us had met him, and it was clear that the referral to our team was delayed.
His muscles were wasted and weak and he could no longer get out of bed. Initially I thought he was delirious – he seemed confused, was reaching out, and looked agitated.
After spending a few minutes with him, it became apparent that he was not confused at all; he was really frightened and desperate for help. I began to run through a list of medications in my head that would relieve his symptoms of acute anxiety.
As I was doing this Rekha went to him and put her arms around him, held his head on her shoulder and stroked his back whilst speaking in soft Bengali. The tension from his body dissolved, he closed his eyes and was momentarily relieved.
Two hours later he passed away. Although I had recognised that he was in the final stages of his illness, none of us had foreseen such an imminent death. I felt shocked and saddened, and regretted not having done more.
Then I thought of Rekha-di and her act of compassion that so effectively relieved his suffering in that moment. This may have been the last kind and soothing touch he received before he died. Rekha’s embrace was far more powerful than a prescription or a doctor’s opinion written in the notes.
Rekha-di has taught me a lot about compassion this year. I now use touch more readily. This transcends cultures and languages to show concern and care.
She has also shown me how to be with patients and families and acknowledge their pain without always having a solution for it – one of the hardest but most important aspects of palliative care.
Unduly restrictive regulations limit access to pain relief and palliative care for people and families in need. As a result, millions of people suffer from pain which is avoidable and could be managed with proper access to the correct medications.
You can learn more about the World Hospice and Palliative Care Day campaign online, including key messages and downloadable resources.
This article originally appeared as part of a longer piece in the series: Narratives in Pain, Suffering and Relief in the Journal of Pain & Palliative Care Pharmacotherapy. It is republished with permission. To view the original article please visit the journal online.