In 2014 we published a report on End of Life Care in the UK and subsequently have written a number of related blogs on this important subject. This week's blog has been written by a member of our team, based in India, who was motivated to write it having helped us with our research for our upcoming report on 'Vital Signs: How to deliver better healthcare across Europe - which includes palliative and end of life care as one of the seven vital signs and highlights its importance as a quality measure healthcare system performance.
According to the World Health Organization (WHO) definition, 'palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, 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'.i Put simply, palliative care is specialised medical care for terminally ill people aimed at providing relief from acute suffering caused by physical pain and psychological, social and spiritual distress. Evidence shows, that adequate palliative care improves quality of end-of-life care for both the patient and the family through socially acceptable and affordable interventions.
India is home to one-fifth of the global population. More than 9.8 million people die each year in India and the number of people in need of palliative care is estimated to be around six million (assuming that 60 per cent of all those who die would benefit from palliative care). Although palliative care has been available in some parts of India for almost 3 decades, the development of services has been patchy and many commentators describe it as "inadequate". While some of the regions are well covered, most are not. The available services are very unevenly distributed with the state of Kerala, which covers three per cent of the country's population, with more than 90 per cent of the palliative care services in the country. Indeed, less than two per cent of those in need of palliative care have access to it in India. The Indian palliative care scene, with its diversity in approach and delivery of services, offers some valuable lessons to service development in low and middle income countries.ii
The Economist Intelligence Unit's (EIU's) Quality of Death Index 2015, updates and expands on the first iteration, published in 2010, and evaluates 80 countries using 20 quantitative and qualitative indicators across five categories: the palliative and healthcare environment, human resources, the affordability of care, the quality of care and the level of community engagement. To build the Index the EIU used official data and existing research for each country, and also interviewed palliative care experts from around the world. The index places India at 67th, concluding that it has made some, albeit quite slow, progress since 2010, largely due to an improvement in the government's commitment. On the five categories of palliative care the EUI ranks India as:
- 51st on the palliative and healthcare environment
- 67th on human resources
- 74th for affordability of care
- 59th on quality of care
- 45th on community engagement.iii
Back in 2010, the Indian state of Kerala was identified as 'a lonely beacon of hope in a country otherwise failing to provide its citizens with suitable painkillers and palliative care'. By 2015, however, initiatives were emerging in other parts of the country. For example, the state of Andhra Pradesh now includes palliative care funding in its public insurance cover, making access to services better than in most other Indian states. While these regional pilots have not yet achieved the goals of the 5-year strategy created in 2012, not least due to withdrawal of funding by Parliament for planned measures; elements of the strategy remains in place and, as a result, some teaching programmes are emerging across the country. In India, the passing in 2014 of the Narcotic Drugs and Psychotropic Substances (Amendment) Act by parliament brings legal clarity for physicians wanting to prescribe opioids to their patients. The expectation is that this legislative change should make it considerably easier for Indian physicians to prescribe morphine in future, although the situation still varies from state to state.iv
Public awareness on palliative care is also extremely low with limited attempts to increase awareness. The Indian Association of Palliative Care (IAPC), was stablished in 1994, in consultation with the WHO and the government of India, to provide a common platform of collaboration to connect and support different entities involved in palliative care. It also provides policy recommendations and tries to create awareness through different models of communication.v The National Cancer Control Programme also includes a section on palliative care but development of services has been slow as they have not been given sufficient priority or adequate funding.vi
Furthermore, unlike Western nations, Indian culture does not encourage enough patient autonomy on decision making or open communication between medical professionals. Opportunities to speak directly and honestly when end-of life approaches, are often missed. Avoiding candid conversation about death regularly leads to medical interventions that incur huge costs and energy and prolong the suffering of the patient and family members, resulting in an undignified death. This lack of comprehensive policies to integrate palliative care with other health and social care services, low public awareness for palliative care options and inadequate access to effective pain medications make access of a good quality palliative care a far distant dream in India.
While there is no one size fits all approach to improving services and providing good palliative care, there is need to create more partnerships and collaborations between various stakeholders of the Indian healthcare system to create a sustainable and affordable model for palliative healthcare. The stakeholders include hospitals, hospices, pharma companies and non-government organizations (NGO) who should collaborate to create cost effective models to improve the quality of palliative care. Indian NGOs would need international support to influence government policies and priorities but necessary measures include raising public awareness by targeted and customised campaigns that address the wide cultural and language barriers; training programmes to train the healthcare professionals and re-designing regulation on opioid analgesic's to mark a new beginning in the development of palliative care service - something that the country desperately needs.
I WHO Definition of Palliative Care, WHO, 2016. See also:
ii Models of delivering palliative and end-of-life care in India. Kumar, s. June 2013. See also: http://www.ncbi.nlm.nih.gov/pubmed/23635881
iii The 2015 Quality of Death Index-Ranking palliative care across the world, The Economist Intelligence Unit, 2015. See also: https://www.eiuperspectives.economist.com/sites/default/files/images/2015%20Quality%20of %20Death%20Index%20Country%20Profiles_Oct%206%20FINAL.pdf
iv The current status of palliative care in India, Cancer Management, 2015. See also: http://www.cancercontrol.info/wp-content/uploads/2015/07/57-62-MR-Rajagopal-.pdf
v Indian Association of Palliative Care. See also: http://palliativecare.in/
vi The current status of palliative care in India, Cancer Management, 2015. See also: http://www.cancercontrol.info/wp-content/uploads/2015/07/57-62-MR-Rajagopal-.pdf
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