A study in The Economist placed the UK top and India bottom of a list of countries ranked according to the quality of end of life care they provide.1 Provision of palliative care varies vastly throughout the country with the majority of services concentrated in Kerala, a state with the lowest infant mortality and highest literacy rates in India. West Bengal has only a handful of services, most of which are run by charitable organisations.
I am one of three full-time palliative care doctors working in Kolkata at the moment, a city with a population of over 14 million. I am here for one year before returning to London to finish my GP training. I spend most of my week working at a not-for-profit private cancer centre and one day at a clinic run by the UK-based charity Eastern India Palliative Care (EIPC).
The experiences I have shared here highlight the main differences between the UK and India, and the challenges faced in implementing palliative care services in West Bengal.
Mithu was diagnosed with advanced breast cancer three months ago. When she sought medical attention at a government hospital the lump was already 7x8cm. Her husband explained to me that the doctor had given her paracetamol and said ‘there is nothing we can do, go home’. He found his way to the palliative care clinic I work at through an information kiosk run by EIPC at the hospital. He was desperate – she was in terrible pain, unable to get out of bed, eat or sleep.
I arranged to visit her at home with Dr Dam, a local doctor working for EIPC. Mithu’s home is a tiny windowless room which doubles as a book-binding business, half the space is occupied by an old hand-operated machine. She was lying in a foetal position on the concrete floor moaning. I was struck by how young she looked, just 30 years old. Her right breast was entirely tumour, the nipple eroded away to a cavity containing cheesy-looking tissue. Her nine-year-old daughter sat stroking her arm and crying quietly while we dressed her wound.
Dr Dam made up an injection containing pentazocine, midazolam, ketamine and ondansetron. This is a cocktail he has developed over the past decade to treat unbearable pain without morphine, which he is unable to prescribe. He leaves the injection with Mithu’s husband and shows him how to give it. The next opportunity to see her will be one week’s time.
Like Mithu, two-thirds of patients in India present with advanced cancer. Just under half will already be experiencing excruciating pain. 2 Only 0.4% of the population have access to oral morphine, the WHO gold standard treatment of severe pain. 3 It is one of the cheapest pain killers on the market yet 90% of the global morphine is consumed by less than 10 Western countries, the UK included. 4
Prohibitive drug laws make access to morphine for medical purposes extremely difficult in India. My hospital is a rarity and stocks morphine but requires five licenses to do so. Each licence needs renewing every 6-12 months. In 2014 an Amendment to the Narcotic Drugs and Psychotropic Substances Act was passed enabling medical institutes to procure morphine through a single licence. We are yet to see the benefits of this in West Bengal.
Witholding or withdrawing life support
Mithu and her family give some insight into the impact of poverty and inequitable healthcare. For families who can afford to pay for hospital care, death is often highly medicalised leading to suffering of a different sort. In 2011, 91% of cancer patients in England who died in hospital did not wish to do so. 5 Whether you are in the UK or India, being in hospital at the end-of-life leads to unnecessary medical intervention compromising comfort, privacy and time spent with loved ones.
In India I have seen many palliative patients dying in intensive care, receiving futile and costly interventions such as inotropes and ventilation. While this may be the family’s wishes, I have found it distressing to witness the attempt to prolong life at the expense of quality of life and dignity. For Dr Dam, experiencing this as a consultant anaesthetist compelled him to re-train in palliative care.
Intensive care at the end of life can leave families with unmanageable hospital bills that threaten the education and future welfare of several generations. Unlike the UK, where legislation for end-of-life care is robust, Indian doctors fear withholding or withdrawing life support and often practise defensive medicine. Other contributing factors include the market healthcare economy, cultural expectations and communication barriers.
Talking about death
In India healthcare tends towards a disease-focussed model with a paternalistic doctor-patient relationship. Palliative care introduces the concept of a patient-centred holistic approach and is the first speciality to teach communication skills; training that is now embedded in all UK medical school and post-graduate curriculums. When working with life-threatening diagnoses such as cancer, the common practise is to inform family members and allow them to decide whether the patient is told.
The father of Suresh, a 27-year-old man with advanced lung cancer pleaded with me not to answer Suresh’s question ‘Will I live or will I die?’ He said to me ‘telling him will kill him before he dies’. From my experience there appears to be a widespread belief in West Bengal that knowing you are terminally ill will lead to a psychological death. Families feel it is their duty to protect the patient from the truth at all costs, maintaining a false hope for cure even when the patient is dying.
This is different from denial, in which the patient is informed of the truth but as a defence rejects it. Hiding the truth often leads to conspiracies of silence that can heighten fear and anxiety. 6 Patients such as Suresh are not given the opportunity to face the emotional reality and to come to terms with it. They are denied control over treatment and end-of-life decisions such as making financial arrangements, saying goodbye to loved ones, accomplishing unfulfilled wishes or planning where to die. By avoiding these conversations there is a sad inevitability to escalating medical intervention as death approaches.
In the UK patient confidentiality and autonomy are priorities – the patient has the right to decide how much they are told and who they wish to involve in decision making. Open, honest and sensitive communication can change a patient’s experience of illness, giving patients and families the opportunity to address fears and anxieties, contemplate life and live as fully as possible until death. Many aspects of achieving a ‘good death’ rely on open communication.7 Striking a balance between respecting these cultural differences and challenging them is a daily test.
There are many other obstacles faced in the development of palliative care in India including population density, geographical diversity, poverty and cultural expectations.8 Committed individuals such as Dr Mitra (founder of EIPC) and Dr Dam work tirelessly to improve palliative care services in West Bengal. Although there can be much to learn from the UK or Kerala, one model does not fit all.
Within India each state needs to develop its own palliative care and pain policies.
Alongside this, awareness needs to be raised amongst the public, and a workforce must be trained so that doctors, like the one who saw Mithu, no longer say ‘nothing more can be done’.
As Dame Cicely Saunders said in 1976: ‘Go around and see what is being done and then see how your own circumstances can produce another version; there is need for diversity in this field.’
The names of patients have been changed for confidentiality.
Hannah Fox is a GP registrar working in the Saroj Gupta Cancer Centre and Research Institute, Kolkata, for one year. You can read her blog here.
1 Economist Intelligence Unit. The quality of death Ranking end-of-life care across the world Commissioned by Lien Foundation (2010).
2 EIPC. www.eipc.org.uk
3 SC Macaden, et al. End of Life Care Policy for the Dying: Consensus Position Statement of Indian Association of Palliative Care. Indian Journal of Palliative Care: 20 (3); 171-181. (2014).
4 INCB. Report of the International Narcotics Control Board on the Availability of Internationally Controlled Drugs: Ensuring Adequate Access for Medical and Scientific Purposes. United Nations New York. (2010).
5 Office for National Statistics. Additional analysis from the National Bereavement Survey (VOICES). (2011).
6 Downing J, Atieno M, Debere S, Mwangi-Powell F, Kiyang F A. Handbook of Palliative Care in Africa. WHO. (2010).
7 Kehl, KA. Moving toward peace: an analysis of the concept of a good death. Am J Hosp Palliat Care; 23(4): 277-86. (2006).
8 D, Patel FP, and Shar. Palliative Care in India: Current Progress and Future Needs. Indian J Palliat Care; 18(3): 149-154. (2012).