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'When we look back in time and study old cultures and -people, we are impressed that death has always been distasteful to man and will probably always be' – Elisabeth Kubler-Ross, 'On Death And Dying' Medicine as a field grew out of the undying spirit of human endeavour to battle against circumstances that cause death. This battle of scientific knowledge has given us countless victories over innumerable diseases which once conquered human populations, eradicating death sentences such as malaria and polio across the world. To many, the future of medicine may imply near-immortality – with studies on the science of ageing prominent in news media and common discussion. This focus on the extension of life has unfortunately driven attention away from the extremely important field of palliative care. The WHO defines palliative care as 'an approach that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual'.1 Palliative care is a field focused on holistic relief of symptoms not only in terminally ill patients, but it also aids in improving quality of life outcomes in patients of chronic debilitating illnesses. Although introduced in India during the mid-1980s,2 the field has made concrete progress since then. Despite being a relatively new field in medical science, the need for palliative medicine has increased through the years with the rise in the cases of chronic illness in world populations. With the burden of chronic illnesses rising in the Indian population, it is imperative that equal access to palliative healthcare is provided in its healthcare system. STATUS OF PALLIATIVE CARE IN INDIA The earliest palliative healthcare providers in India were based in mostly urban areas. This trend has remained, with rural access to palliative healthcare being significantly less compared to urban population systems. This is evident in the information published on the website of the Indian Association of Palliative Care. A quick review of the state-wise data reveals uneven development of the field across zones, with greater access to services in the states of the South Zone compared to other zones. A majority of the states and union territories of India do not have a concrete policy for palliative healthcare, translating to subpar coverage in these areas. There are also problems in the preparedness of districts to tackle the rising burden of palliative patients, with Kerala being the only state in which all districts have sufficient instruments to provide palliative healthcare.3 This could be a result of the unique healthcare system in India, where private urban hospitals bear a significant load of public healthcare despite the presence of free government hospitals. Government hospitals are overburdened, compromising the quality of care provided, and are often situated at inaccessible locations to a vast majority needing palliative services. Amongst the major reasons for the relative lack of development of palliative healthcare in India is the strict control of essential opioid medication. Regulatory acts such as the Narcotic Drugs and Psychotropic Substances Act of 1985 have led to greater barriers in access to life-improving pain medication such as morphine and methadone. BARRIERS TO PALLIATIVE CARE IN INDIA The greatest barrier to palliative care in access is the lack of knowledge about it amongst the general population. Most of the general public believe palliative care to be related to death and dying, causing hesitancy. While it is the duty of doctors to promote public education about palliative health options to the general public, it is seen that awareness amongst medical professionals is also lacking. In a 2020 study conducted amongst healthcare providers in Bihar, knowledge of palliative care was found to be deficient, perhaps due to a lack of specific training in medical and nursing curricula. Medical care providers often found difficulty in breaking bad news to patients and discussing their treatment goals.4 The lack of awareness and general confusion between palliative care and hospice care, compounded with insufficient funding for research studies due to lack of political support and institutional indifference, lead to patients seeking alternative medical pathways such as Ayurveda, Siddha and Unani treatments for solace. In order for the field to truly help the people it was designed for, there must be greater patient education as to their choices and rights in their own treatment. PALLIATIVE CARE INITIATIVES IN INDIA According to the WHO's global action plan for the prevention and control of non-communicable diseases, palliative healthcare is explicitly stated as a non-negotiable part of universal healthcare. The Ministry of Health and Family Welfare had launched the National Programme for Palliative Care (NPPC) in 2012 on the basis of a report dated November 2012 by an expert group on the needs of palliative care in India. There is no separate budget allocated for the scheme, and the onus is on the state to prepare a proposal based on model Program Implementation Plans (PIPs) from the Central Government. On the basis of state proposals, funds from the National Health Mission are allocated.5 The activities of the NPPC are done through the National Programme for Prevention and Control of Communicable Diseases for essential funding for palliative medicine under key health programs for non-communicable diseases and arrangements for adequate availability of opioids in coordination with the Central Drug Standards Control Organisation. However, palliative care still remains a less popular choice amongst a majority of the terminally ill population, mainly due to concerns of catastrophic spending. According to a report by 'The Print' dated January 2021, only 31% of the claims made under the Ayushman Bharat scheme were made for palliative care.6 This calls for strengthening screening programmes under the National Health Mission schemes for non-communicable diseases, as well as increasing the number of hospitals and palliative care centres empaneled in the insurance scheme. THE KERALA MODEL Of all the states and union territories, Kerala has made remarkable progress in ensuring higher rates of palliative healthcare access. This is mainly due to the increased non-communicable disease morbidity rate in its ageing population, making palliative care amongst the top priorities in its public health policy. Kerala was amongst the first states in the country to come up with a comprehensive palliative healthcare policy, which relied on well-established local government systems to ensure equitable access through all its districts. It has also incorporated palliative care in its National Rural Health Mission through the Arogyakeralam Palliative Care Project. According to its new Palliative Care policy (2019),7 the state palliative care infrastructure is divided into three systems: primary, secondary and tertiary. The primary-level care is implemented under the aegis of the medical officer of the primary healthcare institution in a given Panchayat unit. Home-based care is provided with a series of structured visits by Accredited Social Health Activist (ASHA) workers, Local Self Government (LSG) members, Primary Health Centre (PHC) field staff and volunteers. The secondary-level palliative care is implemented at the level of major district or Taluk Hospitals upon referral from primary-level programmes. Long-term care programmes are provided for patients with non-communicable diseases, along with specialist nursing services and physiotherapy programmes. At the tertiary level, training and education of students, professionals and volunteers is carried out, along with maintenance of overall coordination, monitoring and quality improvement of primary and secondary-level care units in the given district. THE FUTURE OF PALLIATIVE MEDICINE IN INDIA India currently has amongst the world's highest population burdens for non-communicable diseases. It also has one of the largest populations of diabetic patients in the world, who are vulnerable to various chronic illnesses such as cardiovascular diseases and neuropathy. With the ever-decreasing ages of onset of these diseases in the population, it is imperative that more concrete measures are taken to ensure universal healthcare before the situation escalates. This includes the strengthening of palliative healthcare structures and ensuring its equitable access. The introduction of MD Palliative Medicine courses across India has been a great leap forward, but the quality of education and training programmes for palliative health team members in governmental, private and non-governmental organisations must be prioritised to bring more uniform palliative care models across the country. Many patients in dire need of palliative care are unfortunately either unaware of it or are unable to access it due to various geographical, regulatory and political barriers in the country. This is compounded by a large disparity in the availability of palliative care from state to state. The problems faced by patients searching for palliative care access are consequences of a deeply disjointed healthcare system, wherein healing is confined to the hands of those with the money to afford the care they need. There is also a rising need for building the knowledge base of palliative medicine to provide verified, evidence-based care. Currently, the boundaries of palliative care are not sharply defined, and quality of care vastly differs based on the institution. The immediate future of palliative care lies in community participation in care programmes to improve current access rates. Adequate sensitisation and awareness in the community can lead to significantly positive outcomes, as seen in states experimenting with palliative healthcare models.8 Medicine has always fought two great wars – the war against disease and the war against human suffering. As medical students, we learn about the mechanisms of disease and the various tools and methods designed through the centuries to fight it, believing the purpose of medicine to be the triumph of science over death and disease, rather than its true face as the triumph of science over suffering. The philosophy of palliative care always prioritises patient-centric care, keeping its goals in alignment with the patient's comfort and wishes. It is inherently built on the core bioethical principles of patient autonomy and beneficence. Palliative Care in India endures, despite all the struggles from its infancy. It has taken great strides in the few decades since its introduction. It is imperative that it reaches every patient, regardless of their background or social circumstances, and recognise their right to a life without suffering and a dignified death. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.
Fidha Labeeb (Mon,) studied this question.