Adventures — 6 June 2015 at 4:08 pm

Palliative Care in India

Dr Hannah Fox / GP Registrar / London

Dr Hannah Fox is a GP registrar training in Hackney, London. Over the last year, Hannah has taken time out of training to work at the Saroj Gupta Cancer Centre in Kolkata, India, and part time for the NGO Eastern India Palliative Care. In a country where poverty is rife and inequalities in healthcare are stark, Hannah describes her experiences of palliative care on both sides of the coin.

For many Kolkata is a city synonymous with dirt, pollution, extreme poverty and destitution. Mother Theresa is famed for her compassion towards poor slum dwellers, but her legacy is controversial and adds to Kolkata’s international reputation for squalor. For me, Kolkata is a city in which so many of India’s charms are concentrated. Much of life is lived on the streets, where you can find everything from street barbers, cobblers, paanwallas, chai being sold in terracotta teacups to people having showers in hand pumped water on the street corner. The sense of community is palpable, the pace is slow and life here feels very different to London.

In a city with over 14 million people where 22% live on less than Rs 27 (27p) per day, healthcare is a luxury. People die every day of preventable diseases. I am currently working in a cancer centre, with over eighty per cent of patients presenting with stage four disease. It is a common occurrence to see patients with horrifically disfiguring tumours that are seeking medical care for the first time. For many of these patients, palliative care offers relief from pain and can significantly reduce suffering in the last stages of life. Some might say that palliative care is a low priority given that basic healthcare needs are not being met, but I would argue the opposite. The need for a comprehensive palliative care service in India is great, it can be cheap to deliver and can make a huge difference to patients and their families.

This year has been full of challenges, which at times seem contradictory and reflect the extremes of wealth and poverty in India. I will share some experiences of working with scarce resources for the poorest in Kolkata, as well as working with wealthier Indians who suffer the perils of overtreatment.

Working with scarce resources: Thinking outside the box

Pain management is a big problem for palliative care services in India. Because of stringent drug enforcement laws, only 0.4% of the population have access to oral morphine, the WHO gold standard treatment of severe pain. India is a large producer of opium, but exports most of it to the West. Ninety percent of the global morphine is consumed by less than 10 Western countries, the UK included. It is also one of the cheapest painkillers on the marker, and more affordable than more readily available weaker opioids like tramadol.

A palliative care doctor without access to morphine or a syringe pump would probably feel fairly powerless in the UK. Dr Dam, a local physician who is committed to delivering palliative care to patients at home, has found his own way of treating severe pain. Having trained as an anaesthetist, he has developed a concoction containing pentazocine, midazolam, ketamine and ondansetron that can be given to the patient in one syringe. He names this the ‘Koshish cocktail’.

I went with him to visit a young woman with advanced breast cancer in her home. She first sought medical attention when her entire breast tissue had become tumour and had started to fungate. The doctor from the government hospital gave her paracetamol, told her there was nothing more that he could do and sent her home to die. Her family are very poor, living in one room that contained a book-binding press. This is known as a ‘house-hold industry’; a much more romantic name than the reality. She had no bed, and was lying in a foetal position on the concrete floor moaning. Dr Dam made up the Koshish cocktail. He inserted a subcutaneous butterfly needle in her chest wall and administered 1ml. Over ten minutes the cocktail took effect – it numbed the pain enough for her to be able to sit up and talk to us. He leaves the syringe with her husband and advises him to give 1ml every six hours.

I could not help but feel alarmed by the potential hazards; the nine-year old daughter at home, the poor hygiene, patient safety. I ask ‘What if her husband gives too much?’ Dr Dam reassures me that if she is accidentally overdosed it would not kill her, just make her sleep for a few hours. Her suffering is so great that the benefits outweigh the risks.
Before we leave, Dr Dam advises the husband to buy some sanitary towels. He explains these can be used to dress her wound on her breast; they are an effective, easy and cheap alternative to a proper dressing. The medicines he has given are free.

I respect Dr Dam for his creativity, but cannot help but feel frustrated that he has to treat patients in this way. He has worked in the UK, and talks about our ‘guideline culture’ as inhibiting and a threat to doctors’ freedom of thought. I argue that they are important in an environment with enough resources, and act as a foundation to improve practice and ensure that there is a good standard of care for all. Medicine is nuanced, and so guidelines should not stop doctors thinking. I feel much more strongly about this having seen what happens when the environment is resource rich but unregulated.

When resources are unregulated

In 2014 sixty three percent of inpatient deaths in my hospital were in intensive care (ITU). Being a cancer centre, the vast majority of these deaths were patients with end-stage metastatic cancer. Patients with metastatic cancer who develop progressive organ failure are usually at the end of life, and medical heroics in the form of life-support measures do not prevent this from happening – they merely act to prolong suffering.

In the NHS , the ITU is a ‘closed’ unit – the consultants screen and control admissions so to ensure that only appropriate patients are admitted. In my hospital in Kolkata (as is the case in many private institutions worldwide), the ITU is ‘open’ and any doctor in the hospital can decide to admit their patient. Many of these doctors say they admit dying patients to ITU because of pressure from families and a fear of litigation if they do not succumb. Rarely are these families making informed decisions based on a clear understanding of the circumstances. Striving to prolong life regardless of the patient’s quality of life is propagated by the medical culture, miscommunication, false reassurances and the market healthcare economy.

I have seen many patients ‘hanging-on’ in ITU on life-support for a week or more. Usually they can no longer communicate and families can only visit for a few hours each day. The suffering is hard to witness and the financial cost for the families can be devastating. According to the Lancet, medical costs drive 39 million Indians into poverty each year.

The poor die in agony in neglect, the middle class die in agony in ignorance and the rich die in agony on a ventilator. No one gets a dignified and pain free death.
Dr Mitra, Founder of EIPC

Reflections

These are just two examples of the diverse medical experiences I have had this year. Working for a sustained time abroad presents lots of novel opportunities – running an outpatient clinic in an old corner shop alone, working with different charitable organisations, setting up new services and training healthcare workers. I have witnessed suffering and poverty on a new level, but also humbling warmth in communities, inspiring individuals and dedicated charities. I hope these experiences will stay with me for a long time after I leave India and will change my outlook on everyday problems at home. I certainly feel more politically engaged and ready to fight for the NHS and welfare state.
There has been plenty of opportunity for adventures too – trekking in the Himalayas, scooting around the ancient ruins of Hampi and scuba diving in a tropical paradise on the Andaman islands. If you are considering a year out, take the plunge!

To read more, visit Hannah’s blog, or follow her on Twitter @drhannahfox