Observed on the second Saturday of October, World Hospice and Palliative Care Day is a day of Action is dedicated to raising awareness and support for hospice and palliative care.
This year marks a decade since the World Health Assembly– the decision making body of the World Health Organization (WHO) adopted its landmark resolution on palliative care, urging all nations to 'strengthen palliative care as an integral part of comprehensive healthcare across the lifespan’.
Ten years on, there remains little progress in bridging the gap and ensuring accessible and compassionate care for those in need.
India’s National Framework for Palliative Care: A Solid Foundation
Palliative care is understood today as specialised medical care for people living with terminal illness.
The care team focuses on providing relief from the symptoms and stress of the illness, with the goal of improving the quality of life for both the patient and the family.
India’s national health policy recognises palliative care as an essential component of primary health care that should include community and home-based palliative care.
The national programme for palliative care envisages the inclusion of the service in the non-communicable disease programme with implementation at every district hospital.
So much so that Medical Council of India has approved palliative medicine as an independent medical subspecialty, and palliative care is included in the medical and nursing curriculum for students to gain a more holistic understanding of caring for patients.
We, thus, have a framework to make palliative care truly part of the health care system.
The Stigma of Palliative Care is Failing Patients
Unfortunately, only 4 percent of patients globally receive palliative care, according to the Lancet Commission report of 2017.
One of the core challenges is a lack of awareness and understanding of the service.
There are several misconceptions among healthcare providers and patients about palliative care being an ‘end-of-life’ care rather than ‘complementary care’ that should run along with curative treatment protocols.
The use of opioids for pain relief used in palliative care, is shrouded in misapprehensions as addictive drugs that can draw legal risks and misuse.
This results in healthcare providers hesitating to refer patients to palliative care.
The existing healthcare system focuses on the disease rather than on patients which often leads to generalised care that is not necessarily suited to the needs of patients or their families.
Family members of patients need physical, financial, emotional, and spiritual support to cope with the relentless demands of caregiving.
Yet their concerns and anxieties are often neglected in our healthcare system.
Palliative Care: Beyond End-of-Life Support
Despite the existing impediments, it is encouraging to learn that the palliative care movement is growing across the country. There are over 800 palliative care centres across the country.
Palliative care services understand that every patient and family is unique, not just from the perspective of their illness but also from the point of their lived experiences, culture, and beliefs.
This allows for a better assessment of the patient's needs and hence a better intervention care plan. Doctors keep track of the patient’s condition, making sure that instructions for care are being accurately followed.
Nurses offer practical support with dressing wounds, treating bedsores and oral hygiene. Social workers observe family dynamics and assess psychological needs.
Through the patient’s journey and the bereavement phase, the palliative care team helps both patients and family members to cope with uncertainty and grief.
Successful models in Kerala, Telangana, and Goa recognize the importance of identifying early patients with serious illnesses, referring them to the nearest primary health care centre, and setting up a system to follow up with them.
The start of the national palliative care helpline is also an important milestone to ensure that patients’ needs are understood, and they are connected to their nearest palliative care service.
Future of Palliative Care in India
There is a need for more stakeholders to join hands to strengthen the palliative care ecosystem.
Integration, and synergies between the government health systems, nonprofits, community organisations, and Corporate Foundations are needed to enhance the ‘care alongside cure’ model.
A challenge going ahead for the palliative care community is to demonstrate the value of palliative care services in reducing pain, managing symptoms, enhancing communication within the family, supporting caregivers, and improving the quality of life.
As we look at the next 10 years, palliative care services across the country must achieve quality standards so that patients can receive a similar quality of service whether admitted to the hospital, at the outpatient, or at home care.
Professor (Dr) Balram Bhargava is the former director general of the Indian Council of Medical Research (ICMR). He was awarded the Padma Shri in 2014. He is now the President of the National Academy of Sciences, India.