Palliative care in India: Care, beyond cure.
The article has been authored by Dr Parth Sharma, Dr Ajoy Oommen John, Department of Medical Oncology, Christian Medical College, Vellore
“From inability to let well alone, from too much zeal for the new and contempt for what is old; from putting knowledge before wisdom, science before art and cleverness before common sense; from treating patients as cases; and from making the cure of the disease more grievous than the endurance of the same, Good Lord, deliver us”- Sir Robert Hutchison
“Mutiyātu, mutiyātu (“I can’t bear it”),” cried an 84-year-sold lady, who presented with acute decompensation of her long-standing heart disease to the emergency department, as we tried to stabilise her. She had presented with an end-stage heart disease which was not improving despite our best efforts. Her lung was flooded with water, and her blood pressure was not recordable as her heart was barely pumping any blood. She had been admitted by the cardiologist on numerous previous occasions, but this was a significant worsening. We explained the poor prognosis to the son but he insisted on all-out care. Respecting the son’s decision, we started a central line (a large IV line inserted in the neck) and started non-invasive mechanical ventilation. With a machine pumping air into her mouth and multiple IV lines piercing her, she seemed increasingly distressed. Inevitably, two days later she succumbed to her illness. Was there another path that could have been taken? How do we judge the time when the treatment of the illness becomes more unbearable than the illness itself?
A dignified death is every human’s right. With the numbers of terminally ill people growing over the years, the need to improve the quality of life of these people has gained significant attention. India with its growing population carries a huge burden of patients suffering from life-limiting diseases. Many of whom have exhausted all meaningful treatment options. Palliative care is an interdisciplinary approach that aims at improving the quality of life of both terminally ill patients and their caregivers. It provides physical, emotional, psychosocial, spiritual and rehabilitative interventions.
It is estimated that nearly 5.4 million patients need palliative care every year. However it's accessible to only 1% of them. The concept of palliative care was introduced in India in the mid-1980s and the Medical Council of India launched the MD Palliative medicine post-graduate programme in 2012. However, the number of institutions offering this course and the number of graduates each year is far below the current and projected needs of the country. India currently ranks 59 out of 81 countries in the Quality of Death index.
Current palliative care services in India have insufficient health care infrastructure, a lack of trained health care providers, and an uninformed attitude of patients and/or caregivers.
Healthcare infrastructure: A larger number of patients in India come to the hospital at more advanced stages of the disease, as compared to the western world. Following this, many pursue the rest of their treatment at tertiary care hospitals. The large tertiary referral centres in India are overburdened and many times, are treating terminally ill patients from different states which reflects the lack of basic palliative care services in many parts of the country. This adds to the cost of care for the patients, fatigue, and burnout for the healthcare team and improper use of the infrastructure and resources in these apex centres. Palliative care services do not require tertiary care facilities. Enabling care of such patients at a local secondary care hospital is a more cost-effective and more efficient use of health care resources.
Changes in training: Few health professionals choose to train in palliative care. This may be because of the lack of training capacity in the country. It may also be due to the lack of knowledge regarding career trajectory and employability of this stream. Lastly, there is a certain stigma associated with palliative care and the perception that the physician is not ‘doing anything’ to ‘cure’ the patient. This last reason is a reflection of the way in which medical education and all subsequent exams focus on treatment of disease and ‘cure’ as the ultimate objective. This leads to a feeling of failure and ineptitude among young doctors when they are unable to cure. A change in attitude is required but difficult to achieve. As Robin Williams says in the movie Patch Adams. “If you treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter the outcome”. Students need to be taught this right from medical school.
Changing attitudes: Palliative care can be perceived as ‘giving up on care’ by both the patient and the family. This perception leads to the endless pursuit of the next intervention. Many such interventions-- another session of chemotherapy, another surgery, another dose of radiation etc are not beneficial, sometimes even harmful and certainly add to cost and lower quality of life. As one eminent physician said, “In India, the poor die in agony in neglect, the middle-class die in agony in ignorance, and the rich die in agony on a ventilator”.
A hospice referral system, a hospital for the terminally ill, is the need of the hour. This will not only reduce the burden on the tertiary care centres but also reduce the cost of basic palliative care. Many countries, like United Kingdom (National Health Service) have included palliative care in their primary health care services and the national health system provides home care by a multidisciplinary team of doctors, psychologists, and nurses. A similar model of care can be seen in Kerala. With just 3% of the country’s population, Kerala offers more than 90% of the palliative care services in the country. Kerala’s “Neighbourhood Network in Palliative Care” programme involves volunteers from the local community to play a key role. NGOs like Pallium India, Parimal Swasthya, and CanSupport and The National Programme for Palliative Care (NPPC) launched in November 2012 under the National Health Mission all serve as beacons of hope for more palliative care services in the country.
Health care professionals need greater sensitisation to palliative care. Palliative care postings for medical and nursing students, training workshops in palliative care (similar to how ACLS, ATLS courses are run), and encouraging doctors to pursue a career in palliative care will improve access to care as well as spread awareness among the need for these services. ASHA workers and volunteers could be trained in basic management and be taught procedures to reduce the discomfort of terminally ill patients at local PHCs.
The Lancet Citizen’s Commission on Reimagining India’s Health System is currently working on a roadmap backed by evidence to attain Universal Healthcare for all. It aims to provide solutions to the above-mentioned problems and ultimately aims to improve health care availability and utilization in India. It is the first Commission devoted to India. It has brought together leaders from academia, the scientific community, civil society, and private healthcare to identify and collate the available evidence on human resources for health (HRH), covering the full range and diversity of HRH, concerning their role in realising Universal Healthcare in India.
The Narcotics, Drugs, and Psychotropic Substances, Amendment Act 2014, has made opioids like morphine and methadone more readily available for clinical use by licensed practitioners, providing suffering patients much-needed relief. The recently launched Ayushman Bharat also promises a better future for palliative care in India by mentioning palliative care services in one of the twelve packages of services. Exclusive budget allocation for palliative care to the existing policies could possibly be an incentive for the states to open up more palliative care centres. Finally, we need to encourage the shift of mindset of treating the person rather than the disease to prioritise care beyond cure.
(The article has been authored by Dr Parth Sharma, Dr Ajoy Oommen John, Department of Medical Oncology, Christian Medical College, Vellore)