ABSTRACT
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. Around 60% of the patients will already be in significant pain, and just under half will be experiencing excruciating, unbearable pain. With only a handful of outpatient palliative care clinics in Kolkata, few patients are able to access essential pain medication and palliative care services. This narrative includes five case studies exploring differing aspects of palliative care: pain management, the difficulties faced in accessing morphine, the importance of compassion in end-of-life care, and the psychological effects on families. They illustrate the degree of suffering some patients and families face, and the relatively simple measures that can be taken to alleviate this. For the current situation in India to improve, there needs to be better access to essential pain medications such as morphine, education of health care professionals and the public, as well as the implementation of government pain management and palliative care policies.
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 health care. 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 center of Kolkata for the Eastern India Palliative Care (EIPC) project.
This narrative draws on five case studies to illustrate the need for and efficacy of palliative care. 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. The final section deals with the interplay of spiritual, psychological, and social pain that led a mother, and in a separate case a father, to take their own lives. I reflect on these two cases and ask: What is the role of the GP, and by extension, the palliative care worker, in alleviating this pain and possibly preventing these tragic events?
ACCESS TO MORPHINE
Miss Dutta
Miss DuttaFootnote1 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
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 anesthetist 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, antiemetic, 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
Rekha 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 recognized 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.
FAMILIES IN CRISIS
Many cancer patients and their families experience existential distress long before death. In the United Kingdom, a general practitioner (GP) is well placed to recognize and respond to this. One of the privileges of being a family doctor is building relationships with patients over time—older GPs may know generations of the same family from birth to adulthood to parenthood. Even without specialist training in palliative care, a GP plays a crucial role in supporting patients and families through life events, including death and bereavement.
Primary health care in India is fragmented, with major differences between states in economic resources and availability of health care workers. Provision is by both the public and private sectors, and by various health care practitioners, including those practicing indigenous systems of medicine (Ayurveda, Unani, Siddha, and Homeopathic medicine—AYUSH) and traditional healers without any form of training. Many patients do not access primary care, and those that do receive a variable quality of care. This has a detrimental effect on health outcomes, including late presentations of diseases such as cancer—something I see daily in my work here. It also means that patients and families living with terminal illness commonly do not have the support of their family doctor. Although the palliative care teams do a great deal to support these families, their resources are stretched and they are unable to treat every member of the family as their own patient.
I met two families in the same week where a good GP could have been lifesaving. Both families had tragically lost someone through suicide. These suicides were a consequence of the huge strain the families were under because of chronic or terminal illness. In India, a quarter of documented suicides are as a result of family problems and an additional fifth due to illness.
Baby Safiya
I met Safiya in a government hospital in Kerala. She was on a ward labeled “Adolescents with behavioural problems and mental illness”—a small (10 × 15 ft) crowded room with six other patients and their family members. Some of the patients looked like they were on the appropriate ward, she was not. She was just 12 months old and had a tiny bird-like body with a huge head and sun-setting eyes. She was very quiet and still—she couldn't move her limbs, and was blind and deaf. She was fed through a nasogastric tube and needed regular repositioning to prevent bedsores. Safiya had been in this hospital for over 350 days of her short life. She was born a normal baby at a normal time but contracted meningitis in the first week of life. She went on to suffer multiple complications starting with hydrocephalus (a buildup of fluid in the brain and an expanding head size). She had an operation to drain the fluid, but the tube that was placed became infected. This was replaced and became infected again. This happened a number of times, and she eventually developed abscesses in her brain that were no longer responding to treatment.
In India, much of the basic nursing care in hospital is done by the family. Safiya's mother or grandmother needed to be present 24 hours a day, sharing her bed and that small room with 12 or more other people. The government hospitals are so overcrowded that privacy, comfort, and often dignity can be overlooked. Her family was very poor and lived in a village a few hours outside of the city. Safiya's father was a farmer and the sole earner for the family, looking after his young wife, his parents, and struggling to meet the spiraling medical costs of Safiya's care. With no support, the financial and emotional burden of Safiya's situation overwhelmed him—tragically he hung himself when she was 6 months old. The palliative care team became involved 6 months after his suicide. They moved Safiya to a private room in the palliative care hospital, where the family received free support and counseling. She died 2 weeks later.
Somnath
The second patient I met was Somnath. At the age of 28, he fell out of a tree, broke his back, and was paralyzed from the waist down. In Kerala, the palliative care team also looks after people with disabilities such as paraplegia—they do this because there is a desperate need and no services. A huge number of young men are paralyzed as a result of trauma; workmen falling from bamboo scaffolding, motorcycle accidents, and falls out of coconut trees, just to name a few.
Somnath went from being an active young father and breadwinner of the family to being completely dependent on his mother and wife for around-the-clock care: feeding, toileting, washing, turning in bed. His mother is a dominant woman and often controlling. After the accident, her relationship with Somnath's wife, her daughter-in-law, became increasingly strained. It all became too much for Somnath's wife to cope with and about one year after the accident she took a fatal overdose.
Both of these cases are desperately sad and give us some insight into the burden families feel when trying to cope with sickness. The knock-on effects of chronic and terminal illness in India are more extreme than those experienced by families in the United Kingdom. The financial burden of loss of employment in addition to medical costs can impact on the socioeconomic status of a family for generations. Children are taken out of school early in order to work, and hopes of education and a career are jeopardized, resulting in a cycle of poverty and destitution. This, along with the demands of being a full-time carer or facing the death of your child, can lead to suicide.
What would a general practice physician or palliative care team do to support families like this? Both specialties are based on a philosophy of patient-centered and holistic care; seeing the person beyond the disease within the narrative of their life story. Understanding the patient's family dynamics, work situation, financial stressors, and emotional distress can build up a much clearer picture of their problem. Of course, recognizing warning signs of depression and suicidality would be a priority, with prompt treatment and regular follow-up or referral. Both GPs and palliative care workers are trained in open and sensitive communication, to be able to talk to patients facing their own death or that of a relative. Doing so helps a person begin to grieve, talk about fears and anxieties, process, and prepare. In addition to this, a GP's ongoing contact with the patient and family (continuity of care) means that they can help organize and coordinate other services available to that patient, including palliative care, psychiatric services, home carers, counseling, or a patient-support group, as well as signposting to financial support schemes and charities.
The United Kingdom has universal health coverage and a welfare state so that families in crisis have a number of safety nets. Most of these services are not available in India. However, a family doctor, with the right training and regular contact, could support these families in many other ways. Listening, spending time, and recognizing warning signs may be enough to prevent unnecessary deaths through suicide.
CONCLUSION
These cases provide a small glimpse into the experiences of families and patients with life-threatening illness in Kolkata and Kerala, India. They illustrate the degree of suffering faced, and in certain circumstances the relatively simple measures that can be taken to alleviate this. For the current situation in India to improve there needs to be better access to essential pain medications such as morphine, education of health care professionals and the public, as well as the implementation of government pain management and palliative care policies.
Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
Notes
1 All patients' names have been changed to protect confidentiality.