It’s the small acts that make the biggest difference

Compassion originates from the latin word patior meaning “to suffer with”; to share in another’s distress and to be moved to respond. As a doctor, compassion reflects a willingness to share the patient’s anguish and a desire to make it more bearable.

Compassion encompasses both sympathy and empathy. Sympathy is a statement of emotional concern whilst empathy is a deeper connection with, and understanding of, another person’s emotional state.

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Compassion has long been recognised as an essential ingredient in medicine and is especially important in areas such as general practice and palliative care. It is not simply a tool for fostering a therapeutic relationship with patients – being kind and compassionate improves patient outcomes. Research shows that when doctors and nurses act compassionately, patients are more likely to divulge information, leading to more accurate diagnoses.  Patients are also more likely to take treatment advice. Other clinical studies show that anxiety and fear delay healing and so any actions which reduce anxiety, such as compassionate behaviours, are likely to benefit outcomes.

May I never see in the patient anything but a fellow creature in pain.May I never consider him merely a vessel of disease.
Maimonides 12th Century

Rekha-di

Rekha is the patient co-ordinator for our palliative care team. 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.

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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 late in the day. 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 drugs 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.

On many occasions Rekha has helped me to deliver bad news. She has supported me through painful conversations with families, explaining that their loved one is dying. These families were often hearing this news for the first time. She has a natural ability to connect with families and frequently shares their tears. She sometimes discloses her own loss; the reason that she feels their pain more acutely than most.

Rekha stands out for her approach in this hospital. I have met many compassionate doctors, but this is usually down to disposition rather than learnt skills.  I often see bad news delivered bluntly in the corridor with little recognition of the emotional significance.  Doctors behaviour is shaped by many factors including cultural expectations, training and the level of suffering they are exposed to.  In Kolkata, and this hospital, the level of human suffering is far beyond anything I have experienced at home.  Doctors working in India require robust defences to be able to cope with this, and distancing yourself from the emotional pain experienced by patients and families is one mechanism to remain functional at work and avoid burnout.

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.

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How would you wish to die?

Hippocratic physicians were among the first to question the ethical limits of medicine – of when and when not to intervene. Hippocrates wrote that the purpose of medicine is “to do away with the sufferings of the sick, to lessen the violence of their diseases,” but also “to refuse to treat those who are overmastered by their diseases, realising that in such cases medicine is powerless.” Knowing the limits is an art and requires an appreciation of the power of nature.   The basic ethical premise of ‘first, do no harm’ is too often forgotten in the drive to treat and beat death.  With ever advancing technology, allowing a natural death is counter-intuitive to many medical professionals.  However, if a treatment has no hope of providing benefit to the patient (as in the case of a ventilator used in end-stage lung cancer), it is likely to worsen suffering and should be deemed as harmful.

Dying in ITU

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 in the throes of dying, and medical heroics in the form of life-support measures do not prevent this from happening – they merely act to prolong suffering.

Part of the problem is that doctors are bad at diagnosing dying.  It can be a challenging diagnosis to make and understandably there is a reluctance to do so if there is any reasonable chance of recovery with further active treatment.  This said, it should be a diagnosis that is made as it changes the patient’s journey. The focus should shift from life-prolonging treatment to supportive care, paying attention to comfort, symptom control, as well as the patient’s wishes including who is present (ie. family, priest) and where they wish to die. Blood tests, investigations and monitoring are no longer useful and should be stopped.

The most common scenario in this hospital is that doctors see the deterioration and respond by upping the intensity of care.  The dying patient is often transferred to ITU, where the doctors instigate life-support measures, insert central lines, nasogastric tubes and start expensive futile medications.  In the worst cases patients die on invasive ventilation.  Family distress is heightened by limited visiting hours – they can only see their loved one for a few hours each day. Death is transformed into a slow and often painful and lonely experience.

The function of ITU is distorted.  Rather than providing temporary organ support for patients with potentially reversible organ failure it becomes a halfway house between life and death.

In the NHS ITU is a ‘closed’ unit; the ITU consultants screen and control admissions so inappropriate cases such as palliative cancer patients are not admitted.  In my hospital (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.  There is a lack of communication that the patient is dying. “We are doing our level best” is a phrase I commonly hear from families and doctors alike. This usually means maximal intervention until the very end.  Too often “our level best” does not equate to what is in the patient’s best interests.

 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

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Slums in Kolkata

The concept of a good death

I recently gave a lecture on the concept of a ‘Good Death’ to forty senior cancer doctors who deal with death daily.  From the audiences reaction it seemed to be a novel discussion point.  I invited them to contemplate the question “How would you wish to die?”  This is very personal, but most people would agree on certain aspects such as being pain-free, having symptoms controlled and being able to spend time with loved ones.

I would want to die at home, some people may wish to die in hospital.  How about intensive care?  A recent study in the US showed that 88% of doctors would forego high-intensity treatments for themselves at the end-of-life.  The study suggested that this is because doctors witness the tremendous suffering their terminally ill patients experience as they undergo ineffective treatment.  Asking a question like this helps doctors reflect on the gap between their own wishes for care and the care they are providing for others.

To prevent palliative patients dying on ITU there needs to be a recognition that medicine cannot prevent death, and that intensive care can do more harm than good.  Educating healthcare workers about death and treating dying patients is the first step.  Better communication and policies to prevent terminal patients being admitted to intensive care is also needed.  For change to happen there needs to be a shift in paradigm, and this will take time.

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A long way to go

A Deathly matter

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.

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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.

photo(1)photo 4photo (1)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

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

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

Families in crisis – the role of a GP

Many cancer patients and their families experience existential distress long before death.  In the UK a General Practitioner (GP) is well placed to recognise 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 healthcare in India is fragmented with major differences between states in economic resources and availability of healthcare workers.  Provision is by both the public and private sector, and by various healthcare practitioners including those practising 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 labelled ‘Adolescents with behavioural problems and mental illness’ – a small (10x15ft)  crowded room with 6 other patients and their family members.  Some of the patients looked like they were on the appropriate ward, she was not.  She was just twelve 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, 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 menigitis in the first week of life.  She went on to suffer multiple complications starting with hydrocephalus (a build up 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 24hrs a day, sharing her bed and that small room with twelve or more other people.  The government hospitals are so over-crowded that privacy, comfort and often dignity can be overlooked. Her family were very poor and lived in a village a few hours outside of the city.  Safiya’s father was a farmer and the sole earner of the family, looking after his young wife, his parents and struggling to meet the spiralling 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 six months after his suicide.  They moved Safiya  to a private room in the palliative care hospital, where the family received more support and counselling.  She died two weeks later.

Government Hospital, KeralaGovernment Hospital, Kerala

Somnath

The second patient I met was Somnath*.   At the age of twenty eight he fell out of a tree, broke his back and was paralysed from the waist down (see footnote 1).  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.  About one year later Somnath’s wife 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 UK.  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 jeopardised 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 GP do to support families like this? Like palliative care, GP is based on a philosophy of patient-centred and holistic care; seeing the person beyond the disease within the narrative of their life story. Understanding the patients family dynamics, work situation, financial stressors and emotional distress can build up a much clearer picture of the patient’s problem. Of course, recognising warning signs of depression and suicidality would be a priority, with prompt treatment and regular follow-up or referral. GPs 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, ongoing contact with the patient and family (continuity of care) means that the GP can help organise and co-ordinate other services available to that patient including palliative care, psychiatric services, home carers, counselling or a patient-support group as well as signposting to benefits schemes and charities.  We are extremely lucky to have 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 recognising warning signs may be enough to prevent unnecessary deaths through suicide.

 Family doctor

 Family doctor delivering care at home

*Names changed for patient confidentiality

(1) 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 paralysed as a result of trauma; workmen fall from bamboo scaffolding, motorcycle accidents and falls out of coconut trees just to name a few.

Freedom from Pain – Part Two

Why is worldwide access to morphine so poor?

Morphine is deemed an essential medication for a basic healthcare system to function (WHO Model List of Essential Medicines) but it is effectively unavailable in almost 150 countries.  Just a handful of Western countries consume 90% of the global opioids; Australia, Canada, New Zealand, the United States of America and several European countries.

Prohibition, intended to curb drug abuse, has been the focus of international and national laws  (1961 the UN Single Convention on Narcotic Drugs).  The inadvertant consequence is that millions of people are denied morphine and suffer unnecessarily, dying in pain.  In 1971 Richard Nixon launched the ‘war on drugs’; one of the most influential political and public health campaigns shaping public opinion. We now have evidence that prohibition fails to stop drug abuse, instead it results in thriving criminal markets.

Powerful political campaigns and prohibitive drug laws seep into the public psyche. People are scared of morphine – they know it as a ‘street drug’; a drug of abuse, addiction and social decline. Doctors who have little experience in prescribing it are scared of side effects such as reduced consciousness and respiratory depression, as well as addiction and abuse. When the person using morphine is not in pain, the effect on the neurological system causes euphoria, and can lead to psychological and physical dependence. In palliative care when morphine is used appropriately, addiction is very unlikely. Even in countries like the UK, this fear and ignorance can create a cultural barrier to the use of opioids as medicines.

Law in India

Morphine is classified as a narcotic under the Narcotic Drugs and Psychotropic Substances Act (NDPS) 1985. The central government controls the cultivation of the poppy, collection of opium and manufacture of morphine. The sale and distribution of morphine is controlled by the state government. Kerala, the state at the forefront of palliative care with over 80% of India’s palliative care programmes, has relatively relaxed regulations so the supply of morphine is reasonable. In states such as West Bengal, the access is much more limited.

photoPatient in Kerala who benefits from palliative care at home

Many committed individuals, including Dr Rajagopal, have campaigned for decades for new legislation to improve access to morphine. There was a breakthrough at the beginning of 2014 when an Amendment to the Narcotic Drugs and Psychotropic Substances (NDPS) Act was passed by Parliament. The amendment enables medical institutes to procure morphine by obtaining a single licence from the State Drugs Controller rather than five.  In theory this should make access to morphine easier. We are yet to see the benefits in West Bengal.

It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience

Julius Caesar

Improving Opioid Availability

Improving government legislation and policy is just the beginning. More hurdles exist, including the lack of medical expertise.  Most doctors in India have not been trained in how to use morphine. Even in countries such as the UK, where doctors are trained  and access is well established, prescribing is often suboptimal. And even if prescribed well, cultural barriers and stigma mean that patients may be reluctant to take morphine. To overcome these interrelated problems the WHO recommends a three-pronged approach addressing;

  1. drug availability; production and guaranteed accessibility at low cost by pharmaceutical companies
  2. government policy
  3. education; of healthcare professionals and the public
photo 1EIPC has information kiosks about Palliative Care in busy government hospitals

Proponents of palliative care in India work tirelessly to address the above three recommendations, recognising that morphine is essential to pain relief and pain relief is the cornerstone of successful Palliative Care Programmes.

 

If you are interested to find out more about access to morphine worldwide, I recommend this excellent film: http://www.lifebeforedeath.com/movie/index.shtml

Freedom from Pain – Part One

Morphine is produced in abundance in India and is one of the cheapest and most effective pain killers known to man.  It is regarded as the gold standard of analgesics to relieve intense pain in the World Health Organisation (WHO) pain treatment ladder.  Yet due to stringent drug enforcement laws only 1-2% of patients in India with severe pain, including cancer pain, receive morphine.  Availability and access to morphine is a global problem.  Freedom from pain must be regarded as a human rights issue.

Daily, morphine can alleviate pain and suffering for just 7 pence. Tramadol (the next best painkiller available in my hospital) costs 72 pence per day – more than ten times the amount of morphine. Given the fact that almost a quarter of people in Kolkata live on less than 27 pence a day, morphine is affordable where weaker painkillers are not.

It is not just a painkiller; it has other helpful properties such as relieving breathlessness. Breathlessness can be an extremely distressing symptom at the end of life for cancer patients as well as palliative patients with lung disease, heart failure and renal failure.

Opium Poppy

Papaver Somniferum Poppy

Morphine sulphate, an opioid medication and narcotic drug is grown in large quantities in poppy fields in the states of Uttar Pradesh, Madhya Pradesh and Rajasthan.  India is one of the world’s largest exporters of morphine, yet prohibitive laws make access to morphine for medical purposes near impossible.  A morphine licence (or five) can be obtained, however the paperwork involved is insurmountable for many medical institutes in India. 

The Situation in my hospital

Miss Dutta* was diagnosed with sarcoma (bone cancer) when she was just 28 years old. Five years on and the cancer had spread throughout her body with secondary deposits in her bones, lungs and spinal cord. Her legs were paralysed, she was no longer able to walk 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 functioning lung 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.

The hospital I work in has stocked morphine for the past two decades, but this is not an easy process. Although the law has recently been amended on a national level to improve access to morphine, the implementation of this is yet to be seen. At present, a total of five different licenses are required to procure morphine.

When trying to explain the difficulties medical institutes face in applying for a morphine licence, a wise Indian doctor said to me “the British brought bureaucracy to India, and we took it to a whole new level”. Most people who have travelled in India will have some insight into the bureaucratic mazes faced, whether that be trying to register a visa, or simply booking a train ticket as a foreigner.   Imagine the frustration of trying to apply for multiple licences to supply an ‘illegal’ substance on medical grounds. Understandably, most institutes do not apply.

One licence is required to stock the medication under lock and key. This licence used to last only six months but it has recently been extended to twelve months. A separate licence is required to stock the liquid or injectable form of the medicine. A further three permits are required to transport the morphine from the state that produces it to the hospital: an export permit, a transport permit and an import permit. And each of these permits only lasts for six months.

Not too long ago my hospital faced a situation where the transport permit application had been delayed and the export permit was nearing the end. When the transport permit was eventually issued, there was only a small window of time where all three permits overlapped. There was a problem with the lorry transporting the morphine; it got held up long enough for the export permit to expire. Thus the protracted application process had to start over again, and the hospital ran out of morphine.

Lean patches, where the morphine stock is running low, are not uncommon.  Doctors have to think carefully about who they prescribe morphine to. The worst case scenario is when they run out and patients who were stable on morphine can no longer have it, resulting in a deterioration in their pain control. The stock is never plentiful as the amount the hospital procures must be based on evidence of how much they use.

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A patient receiving morphine from the home care team

Morphine is essential for good pain control, and pain control is central to palliative care.  In the Part Two of this blog I will address the political and cultural aspects of opioid availability, and how access to morphine can be improved.

*Name changed to protect patients identity

Palliative Care in India: The Beginning

After having spent a month in Kerala, experiencing first-hand the most developed palliative care services in India, I am now living and working in Kolkata in West Bengal. With a population of 14 million, 22% of people live below the poverty line (BPL) in Kolkata, which equates to Rs 27 per day or 27p per day.  A large proportion of the population do not have the means to access even basic health care. With only a handful of outpatient palliative care clinics even fewer are lucky enough to access essential pain medication and palliative care services. I am currently working in the ‘Saroj Gupta Cancer Centre and Research Institute’, so all the patients I am working with have cancer. It is estimated that one 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 sixty percent will already be in significant pain and just under half will be experiencing excruciating, unbearable pain1. The need for palliative care in India is huge.

This initial blog is a factual account of what palliative care is and the situation in India. After setting the scene, future blogs will include more personal observations of the challenges faced including patient stories.

What is Palliative Care?

Palliative care is a philosophy of care and an expanding medical speciality that works to improve the quality of life of patients and their families facing the problems associated with life-threatening illness, ultimately giving patients an opportunity to have a dignified and pain free death. The World Health Organisation (WHO) definition states that this is achieved through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’ In real terms, this means supporting patients and their families to cope better with physical symptoms associated with progressive disease such as pain or nausea, as well as providing essential emotional, social and spiritual support. With appropriate and often simple measures such as regular pain medications patients may be able to work for longer or carry on normal daily activities such as helping children with schooling, or attending social functions in the community. Allowing patients and families to talk about and prepare for death can help relatives cope with the loss. In India there is an opportunity to reduce the risk of families falling into crisis and becoming trapped in the cycle of poverty. I will elaborate more on some individual patient stories in future blogs.

Patient who has polio as a child

A patient with a non-malignant illness

Historically, hospice and palliative care programmes focused on the needs of cancer patients who often had a high burden of symptoms. This is no longer the case as the majority of those needing palliative care worldwide suffer from non-malignant conditions including HIV, TB, end stage renal failure, heart failure and lung disease. Palliative care teams are increasingly becoming involved earlier in a patient’s journeys, as good symptom control and holistic care improves the quality of life of the patient irrespective of the number of years they have left to live. It is not simply care of the dying.

Although palliative care does not intend to hasten or postpone death, there is evidence that lung cancer patients receiving early palliative care experienced less depression, increased quality of life and survived 2.7 months longer than those receiving standard cancer care2.

Current situation

Palliative Care was introduced in India in the mid-1980s, approximately 20years after the founding of the modern hospice movement in the UK. Dame Cicely Saunders opened St. Christopher’s Hospice in London in 1967.

In India the coverage of palliative services is extremely patchy. The most developed services can be found in Kerala; a state that boasts one of the highest literacy rate and life expectancy in India.

Kerala

I spent a month at Arumana Hospital in Trivandrum and was lucky enough to spend time with Dr Rajagopal and his team. Despite the huge number of challenges faced in developing services in India, passionate, dedicated and caring individuals like Dr Rajagopal have achieved a huge amount for palliative care. Me & Dr Rajagopal at Arumana Hospital

Me & Dr Rajagopal, Arumana Hospital

Dr. Rajagopal is the director of Trivandrum Institute of Palliative Sciences and the flagship NGO Pallium India. He is one of the founders of Pain and Palliative Care Society in Calicut, which in 1996 became a WHO ‘Demonstration Project’ for the developing world. This grew into the present Institute of Palliative Medicine, which now has over 100 palliative care centres in Kerala, as well as several outside the state. Thanks to this initiative about 40% of the needy in Kerala receive palliative care compared to the national average of less than 1%.

Homecare

Visiting patients at home in Kerala

In April 2008, the Keralan government announced a palliative care and pain policy; the first state to do so in India.

West Bengal

West Bengal is far behind Kerala in terms of palliative care services. The unmet need here is massive. West Bengal covers an area three quarters the size of England, and has almost double the population (91 million). As of 2008, the state had only a handful of outpatient clinics providing basic palliative care services. In response to this need, Dr Mitra (Consultant Oncologist in Brighton & Sussex) initiated a link between UK palliative care experts and the Saroj Gupta Cancer Centre & Research Institute (SGCCRI), Kolkata. In 2010 he founded a charity called ‘Eastern India Palliative Care’ (EIPC), with the aim of strategic implementation of palliative care throughout the region; establishing services and training both healthcare professionals and volunteers in palliative care. At a similar time SGCCRI opened a palliative care department. I am now working in this department, seeing patients as well as helping to deliver the training programme run by EIPC in the hospital.

Challenges faced

There are many obstacles faced in the development of palliative care in India. These include population density, poverty and geographical diversity; one model does not fit all, and each state will need to develop its own policies to fit the social and cultural background3. Morphine is basically contraband in India. It also happens to be one of the most effective and the cheapest painkillers, essential for palliative treatment. The administrative hurdles for an institute to gain a morphine licence are phenomenal. Many individuals including Dr Rajagopal and Dr Mitra have worked tirelessly for years to address the restrictive policies regarding opioid (morphine) prescription. More or this in a future blog.

In India, most patient care is disease-orientated, so palliative care introduces a new approach; that of patient and family-centered care. This is an approach that is ingrained in UK practice; all UK medical graduates are trained in it and it is the foundation of GP care. Patients in India also have different expectations of doctors, and do not always expect to be told their diagnosis. The most common situation is for families to hide a serious diagnosis from their loved one, desiring to shield them from the knowledge that they are dying. This obviously means the concept of patient confidentiality is very different. Again, more on this to come. Finally, limited national palliative care policy and lack of institutional interest in palliative care means that workforce recruitment, especially in West Bengal is a real challenge. Having said all this, there is a lot of positive work going on, and I will be sharing more of this over the next year.

References

  1. http://www.eipc.org.uk/about-us/
  2. Temel, J.S., et al., Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer, N Engl J Med 2010; 363:733-742, August 19, 2010, /NEJMoa1000678
  3. D, Patel FP, and Shar, Palliative Care in India: Current Progress and Future Needs Indian J Palliat Care. 2012 Sep-Dec; 18(3): 149–154.