Going the last mile: How to enable a graceful care journey for the elderly
Create a nationwide cadre of community-based nursing aides who are only dedicated to providing daily compassionate care to the care receiver. This service should be accessible to all Indians irrespective of where they stand in the social strata
As humans, we are wired for connection, to be touched by the warmth of a hug or a kind smile. But, for 70-year-old Adivasi widow Uralu, who lives alone after her children migrated to Delhi, amid her intense pain, she remains soiled in faeces and urine for hours, and even days, if unvisited by neighbours.
In another context, Ramesh, a young Dalit sewer cleaner is battling liver cancer due to alcohol addiction that he picked up to numb his senses before entering the sewers. His wife, the primary caregiver, indebted by the cost of treatment is struggling to care for him while earning money as a domestic worker. Physically and emotionally exhausted, she is unable to take care of herself, which is also affecting the warmth and care she gives Ramesh.
As per a study by the National Statistical Office, there were 138 million elderly persons in India in 2021. Longer life spans and declining birth rate implies a rise in the elderly population. With it, the rising number of population with non-communicable diseases is a cause of concern. As 92.4% of the total population of India works in the informal economy, inference suggests that a significant proportion belongs to marginalised communities. Hence, there is a growing need for accessible palliative care.
From point of diagnosis to the end of one's life, palliative care improves the quality of life of patients and family caregivers who are facing physical, psychosocial, and spiritual problems. But only 1% of those in need have access to palliative care, as noted by Dr M R Rajagopal, founder-chairman of Pallium India-Kerala, popularly known as the father of palliative care in India.
The situation of Uralu and Ramesh highlights the benefits of palliative care specific to home-based care through nursing aides. As home-based care enables comfort, privacy, and peace of mind, people prefer dying at home. For older people living alone, the affectionate company of round-the-clock nursing aides can be comforting as they approach the end of life.
For family caregivers, nursing aides provide respite by easing physical-mental distress, and enabling their bandwidth for self-care. Consequently, it improves the quality of relationships between family caregivers and care-receivers. Additionally, it reduces the cost of transportation to hospitals and medical expenses, thereby easing financial distress. It also limits the chances of hospital-acquired infection and reduces the burden on hospitals. But people like Uralu and Ramesh cannot afford such care services.
This leads us to the question: How do we make quality home-based palliative care accessible?
Recognising the importance of home-based care, palliative care has been integrated into comprehensive primary health care through Ayushman Bharat-Health and Wellness Centres (AB-HWCs). As per the Operational Guidelines by the National Programme for Palliative Care, it is made accessible through Accredited Social Health Activists (ASHAs) and Multipurpose Health Workers (MPWs), who are recognised as frontline workers.
ASHA and MPWs are responsible for the identification of those in need of palliative care. They are trained to carry home-care kits for generic pain management, and a toolkit to assess psychological and spiritual distress in the patient and family caregivers, including post-bereavement support and telehealth consultation. This is an excellent palliative care model for the marginalised.
But there are over 280,000 MPWs and 1.4 million ASHA workers, and both are occupied with multiple responsibilities in the field of neonatal care, Covid-Response, geriatric, and palliative care. Therefore, the model restricts their capacities to periodic home visits and is inadequate in addressing complex everyday care needs related to pain and distress.
Given the background, the solution proposed is to create a nationwide cadre of community-based nursing aides who are only dedicated to providing daily compassionate care to the care receiver and respite to caregivers. Additionally, like ASHAs and MPWs, they would undertake task-oriented aspects of palliative care related to pain management and psychological care, also functioning as a linkage with the secondary and tertiary levels of the health care system.
The model also paves the way for generating livelihood opportunities. As per the Care Work and Care Jobs for the Future of Decent Work Report (2018) by the International Labour Organization (ILO), nursing/nursing-aides is expected to be an important occupation to meet the global need for quality long-term care. As a small step in the direction, RTI International-India supported by Rotary International through the Rotary Club of Delhi South Metropolitan is facilitating skills training of women in a migrant slum settlement, Kusumpur Pahari, in Delhi to create a nursing aide cadre to meet local home-care needs.
Most importantly, community-based nursing aides can be an asset in understanding palliative care needs, goals, and desires, of care receivers and caregivers in its socio-cultural context, and guide palliative medical practitioners at the secondary and tertiary health system level to understand the same. This is important because “Those of us in medicine don’t help, for we often regard the patient on the downhill as uninteresting unless he or she has a discrete problem we can fix”, writes Dr Atul Gawande, a surgeon, writer, and public health leader, and current Assistant Administrator for Global Health at USAID, in his book Being Mortal: Medicine And What Matters In The End.
A nursing aide from Ramesh’s community of sewer cleaners can help medical practitioners understand his needs around: How does he want to deal with his intense pain-use relief medication, or simply bear it as he feels it will give him the strength to die gracefully? If, as an oppressed Dalit faces everyday social humiliation, then how can his anxiety around care-receiving be eased? What kind of grief support would the caregivers need who have lost many family members due to hazards of manual scavenging?
Perhaps, training medical practitioners in humanities can be a small step in strengthening the health care system that can compassionately engage with “unfixable” experiences of pain, dying and caregiving, thereby enabling a graceful care journey for the millions like Uralu and Ramesh.
Dr Rajiv Tandon is director, health, Sanjana Kumari is qualitative researcher, health, Research Triangle Institute (RTI) International, India
The views expressed are personal