Death be not proud, though some have called thee... much pleasure, then from thee, much more must flow...” One of the greatest 16th century metaphysical poets John Donne says in the sonnet Death Be Not Proud that death has no reason to be proud of its invincibility, for it brings many pleasures to those whom it releases from the clutches of earthly sufferings. Six hundred years later, those who are suffering from excruciating pain, look forward to death as their saviour. For a nation that ranks number 67 out of 80 countries in the 2015 Quality of Death Index of the Economist Intelligence Unit, death for many is a choice, not an option in India. During one of his visits to a cancer patient’s home, Dr M R Rajagopal, a leading palliative-care physician who is called the “father of palliative care in India” and chairman of Pallium India came across a very difficult request. Nathu (name changed) had been suffering from an advanced stage of cancer of the tongue. “Advanced”, however, seemed very inadequate to describe what Nathu had. Most of his lower jaw and neck had been eaten away by cancer, leaving a cruel, sharp, knife-like piece of bone under the right ear. When Rajagopal met Nathu, the 28-year-old had just one question: could the doctor help end his life?
WHO NEEDS PALLIATIVE CARE?
• Respiratory patients
• Cardiac patients who have congestive heart failure
• People with Alzheimer’s and Parkinson’s disease
• Those with dementia
• Patients with HIV/AIDS, renal failure, liver disease
Everyone who has read John Greens’ novel The Fault in Our Stars will understand the role a good support system and palliative care plays in the life of a terminally ill patient. For Neha Ahuja, a big fan of the book and the movie, her life came to a standstill when she was diagnosed with a rare immunodeficiency disorder that was making her white blood cells attack her organs and other cells. There were days when the pain just refused to go away.
She did not fear death then, she feared the pain. Medicines only provided temporary relief. Later, she even stopped telling her parents about it, for she could feel their helplessness. For her, death was the only charmer that could heal the pain.
The report that surveyed 80 countries, shows India as one of the ‘worst countries to die in’. Terming palliative care in India as poor, the report says, “On the whole, most terminally ill Indians are unaware of palliative care options and do not benefit from pain alleviation prior to death. Volunteers are present in some facilities, but are under-utilised.”
On the palliative care front, a majority of patients with cancer deal with significant pain, and yet, palliative care reaches less than 1 per cent of the 1.25 billion population. “Ten lakh new cancer cases are detected every year in India, and less than 5 per cent of them have access to palliative care. Usage of morphine (an alkaloid found in the opium poppy plant, which is used commonly to relieve pain) in India ranks among the lowest in the world. There are 238 palliative care centres in India, of which 80 per cent are in Kerala. There is just one full-time palliative care physician per one million patients,” says Dr Muralidhar Thondebhavi S, consultant, Anaesthesia and Pain Management, Apollo Hospitals, Bengaluru.
Morphine: Elixir of Life
■ An alkaloid found in the opium poppy plant, used commonly to relieve pain
■ It can considerably reduce cancer pain
■ In Kerala, 185 centres stock it for patients for pain relief
■ Till a few years ago, it was banned in India as it was considered a narcotic. The ban was lifted in 2014, after an amendment to the Narcotic Drugs and Psychotropic Substances Act, making morphine easily accessible
■ India is a leading manufacturer of morphine and exports 90% of its produce
The problem of chronic pain, according to a recent study done in India, shows a prevalence of 13 per cent in the urban population. This number alone is suggestive of the enormity of the problem. In addition to being highly prevalent, pain is costly to the individual with chronic pain, his or her family, and society. According to data from The Indian Society for Study of Pain (the official society for pain physicians in India), membership has seen a surge over the last six years. The number of members now stands a little short of 2,000, and is growing yearly by 200. Not all hospitals have a department of pain management. However, there has been a push from the Medical Council of India to establish a pain management department in every teaching institution.
Palliative care is a bit of a misnomer in India. While many still do not know what it means, most believe it is pain management care given only to cancer patients. “Palliative care is an unknown entity in India. The man on the street does not know that pain can be relieved, and meekly accepts inappropriate care even towards the end of life,” says Rajagopal.
While the layman has little idea, how much is the medical community aware of palliative care? “In India, there is a huge paucity in understanding of it, not only among patients but also the medical community,” says Dr Nitesh Rohatgi, senior consultant in Medical Oncology, Max Super Speciality Hospital, Delhi, adding: “A part of society understands the principles, but remains confused about what it involves. The need is a broader discussion on roles and limitations of medical treatments and acceptance of death. Only then can we talk about the process of dying, which will lead to the ethos that surrounds palliative care.”
The multi-disciplinary approach to improve the quality of life of patients with serious illnesses is not only limited to pain relief, but also tends to physical, emotional, psychological and spiritual conditions of patients and attendants or family to help cope with the illness. “Usually it is not just the patients who need care. The families of the patients also go through pain while nursing them. They also need help and support. In a country like India, cultural aspects play an important role in palliative care, so does spirituality,” says Dr Chitra Venkateswaran, a psychiatrist, who works with the palliative care unit at Amrita Institute of Medical Sciences (AIMS), Kochi.
There are many specialists—doctors, physiotherapists, healers, counsellors, etc. who are part of a palliative care team. Many, however, believe only cancer patients or the terminally ill need such care. “Even today, most people and general physicians think that palliative care means ‘end of life’, but that’s not true. Palliative care is not limited to cancer, but extends to all chronic life-threatening illnesses such as respiratory patients in ICUs or at home, cardiac patients suffering from congestive heart failure, Alzheimer’s disease, dementia, geriatrics population, HIV/AIDS, renal failure, diabetics, liver disease and Parkinson’s disease,” says Dr Shiv Pratap Singh Rana, pain and palliative care physician, Department of Neuroanaesthesia, Fortis Hospital, Noida.
Sushma (name changed), 48, had a 20-year history of chronic headaches. This had resulted in a poor quality of life, leading to strained relationships with her family, and depression. She underwent a comprehensive assessment, which revealed myofascial pain syndrome involving her facial and head muscles. This had led to pain in the occipital nerve, and due to its long-standing nature, it had resulted in depression, anxiety, anger and the urge to dissociate herself from her family and friends. She underwent modifications to her drug treatment, ultrasound-guided injection, cognitive behavioural therapy and physiotherapy in Apollo Hospitals, Bengaluru. In a few months, her pain reduced by more than 70 per cent.
“There are approximately 920 palliative care centres in India which provide either home care or outpatient and in-patient service. Most centres are localised in southern parts of India. Therefore, for the vast majority of patients, there is an extremely limited access to quality palliative care services,” says Vipul Jain, founder of Delhi-based Advancells, a research-oriented company focused on therapeutic applications of regenerative medicine primarily used in stem cells generating from patient body source.
Kerala has earned, if not officially, the distinction of being the palliative care haven. According to the 2015 Quality of Death Index, “Kerala’s palliative care system stands out as a model.” The state has more palliative care centres than the rest of the country put together. It is the first state to formulate a comprehensive palliative care policy in 2008. Each of the 900 panchayats has a palliative care nurse who has had at least three months’ training, and more than 185 centres stock morphine for patients, which means they all have at least one doctor trained in palliative care. Training to doctors, nurses and others is offered by many centres in India, including seven in Kerala.
Two major NGOs, the Institute of Palliative Medicine at Kozhikode and the Trivandrum Institute of Palliative Sciences (Pallium India), are also working in palliative care. Most private hospitals do not have palliative care facilities, with most notable exceptions such as AIMS in Kochi. “Though the number might be high compared to the situation in other states, it is not so hunky-dory. An appalling fact is that many medical practitioners do not have any knowledge of palliative care. So even when nurses are trained in it, doctors they work under seldom have any idea of what to do,” says Dr Rajagopal, adding, “Palliative care centres are few in hospitals, whether government or private. One reason is poor public awareness and lack of demand. The common man does not know that life with dignity is a human right. Palliative care is less remunerative to a hospital than a high-tech intensive care. It is easy to think of the cost difference between a person dying receiving palliative care and dying in an intensive care unit.”
When 67-year-old Anita Upadhaya (name changed) was diagnosed with Alzheimer’s disease, she used to live in Texas in the US. Widowed at a young age, she had none but friends and neighbours to help her deal with it. There she found support in one of the palliative care centres near her home. Unfortunately, due to the absence of immediate family members, she had to return to India. Her condition deteriorated within a few months of arriving in Kolkata, and her family had a hard time getting used to her condition. During brief moments when she remembered who she was, all she asked was for help to enable her to cope with her condition. With none available, she could only wait for a silent end.
Earlier, the most common challenge faced by doctors was the lack of availability of morphine due to the narcotics ban in India. Interestingly, India is one of the leading manufacturers of morphine and exports 90 per cent of its produce, while its demand in the country is on a rise. “A major challenge is that many cancer specialists do not integrate palliative care with primary care. After the new regulations, oral morphine availability has improved on paper, but the impact on the ground is yet to be seen. Delhi has better morphine availability than many states,” says Dr Ravinder Mohan, head, Knowledge, Education, Training and Research at CanSupport, an NGO that provides home care and palliative care to cancer patients in Delhi.
In 2014, an amendment to the Narcotic Drugs and Psychotropic Substances Act was passed by Parliament, making morphine more accessible. This, however, does not change the equation, as doctors who have been working on the problem for decades without morphine will need time and training to adapt to new medicines. “The size of the formal allopathic care is miniscule, and the bulk of it is directly coming from the palliative pharma market. It is still mostly considered an ancillary specialty to anaesthesiology. In other countries, palliative physicians are delivering the care, training and accompanying the informal caregivers to handle stressful situations in the best way,” says Vipin Pathak, co-founder of Care24, a company that ensures personal affordable healthcare assistance in Mumbai.
Dr Mohan shares the story of a 50-year-old breast cancer patient. When the CanSupport home care team—a doctor, nurse and a counsellor—visited her, she was in severe pain. She was being transfused a bottle of blood every fortnight because the family could afford it. No one bothered about her pain. When the team administered oral morphine, she underwent a prompt pain relief. This helped her take some important decisions like stopping blood transfusion, since she was a terminally ill patient, and insisted that the blood be used for road accident victims, particularly the young. She dealt with some important property-related issues and nominated a good amount to her maid, a gurdwara and a temple. She tried to reconnect with her estranged son, who she had not met for 10 years. “During our next visit, her son was with her and they had resolved their differences. After overcoming her emotional issues, she needed smaller doses of pain medicines. She died after one week after sorting out all pending issues. The magic of palliative care helps people live well till they meet a good death,” says Dr Mohan.
Morphine, however, is not the only drug. Its importance is that it, or drugs in its class, reduces cancer pain substantially. But all pains cannot be removed with morphine, as some do not respond to the drug. Even when it is used, the drug is almost always administered in combination with several other medicines, depending on the type of pain which needs to be assessed by a trained professional.
Suresh, a paraplegic, has been undergoing treatment for over eight years at Pallium India. He sustained an injury to his spinal cord in an accident, and lost sensation below his waist. “Palliative care has helped me tide over the difficult situation,” he says. Suresh’s wife passed away four years ago and he lives with his brother now. He spent the last three months in Pallium India as he developed bed sores when he was admitted to Thiruvananthapuram Medical College. Pallium India trained him in making umbrellas, which helps him earn enough to get by.
The perception of the cost of palliative care is still an issue. “A large number of patients and their families are ready to pay for interventions, even if the condition of the patient does not justify it, but do not understand the value of palliative versus curative approaches. The other challenge is that the palliative market is mostly informal, led by Ayurveda and other alternative therapies. Allopathic doctors are not encouraging the usage of such treatments as no one knows the effect of alternative therapy in conjunction with allopathy. The number of Ayurvedic doctors addressing palliative care has skyrocketed in the last few years, and there are more than 500 of them across Mumbai,” says Pathak.
About the new methods and research in this field, experts differ. “There have been no earth-shaking developments recently, though many medicines are under trial. Palliative care has mostly developed as an offshoot of modern medicine. In 2014, World Health Assembly (the decision-making body of the WHO) had asked all member countries to incorporate palliative care in their healthcare delivery systems across the continuum of care at all levels, meaning that palliative care should go hand in hand with curative treatment and that it must be available at primary, secondary and tertiary level,” says Dr Rajagopal.
Again, a palliative care patient may also benefit from occupational and physical therapy intervention. “These therapists can have a significant impact on the quality of life of terminally ill and cancer patients. In the critical care setting, rehabilitation is often overlooked. Occupational and physical therapists, however, create realistic and meaningful goals for improving comfort, mobility, socialisation skills, and ability to care for oneself regardless of disease state and medical status,” says Pathak. He adds that stem cell therapy could be a latest development in medical field to fight against any illness.
with Ayesha Singh, Meera Bhardwaj, Vyas Sivanand, Saumesh Thimbath and Sreeparna Chakrabarty