Death is visibly present in India, not hidden away in private places like in the UK. Coming home from work last week I saw a funeral procession involving a group of men walking in the middle of the road carrying a body lying on a bamboo stretcher above their heads. Funeral cars can regularly be spotted in traffic jams. They are similar to a hearse, except the back portion of the vehicle has a structure which looks like a mini-greenhouse advertising facilities of ‘air-conditioning’. It contains an open casket so that the body, draped in fresh flowers, can be seen by all. The last one I saw was parked in the middle of our local fruit and vegetable market, people getting on with their food shopping around it. Dead dogs and cats on the side of the road are a commonplace occurrence with so many strays in the city. As a tourist, the Maniarnika Ghat in Varanasi can be seen from a boat ride on the river Ganges. Bodies are openly cremated on a continuously burning fire; a holy place of great significance for Hindus. All of these experiences meld into daily life without causing alarm or even pause for thought.
Friday prayers in Belgachia
India is a deeply religious nation, and Kolkata as a multi-faith city has a representation of all the major religious groups. On our road alone there are six or more shrines and temples, and locals give offerings of flowers or food and a gesture of worship as they pass by. Many people I have met believe in some form of afterlife. With these two cultural facts in mind – the palpable presence of death and belief in an afterlife, one might assume that death is normalised and more accepted. But this is not my experience – even in a cancer centre, where most of the patients have incurable disease, the topic of death is taboo.
From elaborate but temporary pandals to shrines in trees
In the West there is an increasing understanding of the importance of open communication about death. The concept of a good death is very individual, but many of the commonly recognised factors depend upon open and honest communication. In order to live life fully until death, the patient should be given the opportunity to understand what is happening and to have some control over it. Talking about death helps patients and families to face fears, to prepare and to plan. Plans may involve making treatment decisions or financial arrangements, addressing unfulfilled wishes, spending time with loved ones and ultimately planning where to die.
In India, the common practise is for doctors to inform family members about life-threatening diagnoses and allow them to decide whether the patient is told or not. Doctors often collude with families and do not talk openly to patients about poor prognosis, and certainly do not mention death.
Suresh started having difficulty breathing six months ago. He saw a doctor who ordered a chest X-ray and found he had a pleural effusion – a build up of fluid between the lung and the chest wall. The doctor started treatment for tuberculosis. Just before Christmas he had a sudden deterioration with severe difficulty in breathing and was admitted to intensive care. He underwent more tests and was found to have metastatic lung cancer – an unusual and an incredibly unfair diagnosis for a 27 year old non-smoker. Tragically he is unlikely to live for more than a year.
Suresh is a bright and ambitious university graduate who has a passion for history. When I first met him on the inpatient ward I instantly liked him – he talked to me in great depth about Indian independence. After about a week of seeing him he asked me “Will I live or will I die?”. My initial instinct, in line with my training, was to answer his question truthfully. However, knowing this is at odds with cultural practice and aware his family had not discussed this with him already I told him that I needed to speak with his father before I could answer. Of course this was an indication in itself that the answer was bad news. I arranged to see his father and aunt along with a clinical psychologist and a psychiatrist colleague from the UK. We have set up a psychosocial clinic one day a week to work specifically with families and patients who have a terminal diagnosis.
We spent about an hour and a half with his relatives who understood the grave prognosis . I explained that he had asked me this question and I felt it was my duty to tell him the truth. After much discussion his father said “to tell him will be to kill him before he dies”. He pleaded with me not to mention death, rather to only talk of cure. It seems to be a widely held belief in West Bengal that talking about death with a patient who is dying will result in a psychological death and the total loss of hope. In reality, evidence shows that hiding the truth leads to conspiracies of silence that can heighten fear and anxiety.
In the UK patient autonomy is paramount. The patient determines how much information they are told and who else is involved in decision making. In India patients lack autonomy and there is a great resistance amongst medical professionals to speak directly and honestly. Families have the final say on what they think is in the patient’s best interests. In this situation we respected Suresh’s father’s wishes. Suresh did not ask me the question again.
Biju is a ten year old boy with advanced Ewing’s sarcoma. The paediatric team referred his parents to the psychosocial clinic, asking us to discuss Biju’s poor prognosis with them. He had weeks to months to live. His father explained that after he was initially diagnosed he received chemotherapy and was cured. About 5 months later he started to develop weakness in his legs – the disease had come back and spread to the spinal cord. He was now undergoing more chemotherapy. It became clear quite quickly that his parents thought this treatment was for cure as it had previously been successful. They had not understood that it was palliative chemotherapy to control symptoms, and that it may only extend his short life by a month or so. Most of this extra time would be spent in hospital away from his home and his three younger sisters. His father is a labourer and was struggling to afford the treatment – he was just about to sell the family home to fund ongoing chemotherapy. No one had clearly communicated the poor prognosis to them and made sure they understood the intention of ongoing chemotherapy. They were devastated to hear that he would not survive, and incredibly anxious about their impending homelessness.
It transpired that the paediatric team had told them the chemotherapy was palliative, but through a translator as they speak Hindi, not Bengali. The translator was a family member – it is likely that this family member decided not to dash their hope for cure or mention his poor prognosis. The consequences of avoiding talking about death were far reaching for this family; not just psychologically, but financially and socially, risking a slide into poverty, debt and destitution.
Following this discussion they decided to stop ongoing chemotherapy, opting for symptomatic support and to take Biju home to be with the family.
There is a fine balance to be struck between respecting and challenging cultural differences. Open communication with patients is an area that I feel needs to be challenged in India, especially when trying to implement effective palliative care services. Avoiding talking about death can cause much more distress, distorting expectations and treatment decisions. Indeed, it often leads to an inevitable escalation of medical intervention as death approaches, resulting in a futile and costly attempt to prolong life and an undignified death on intensive care. More on this in my next blog.
*Names changed for confidentiality