Adding community to the equation of elderly care

“In the year 2050, there is a demographic phenomenon poised to happen, something which has never happened before in recorded history,” says Arvind Kasthuri, Head of the Geriatric Unit at St. John’s Medical College, Bengaluru. 

What Kasthuri is referring to is the time when the elderly population, for the first time, will exceed the population aged 0-15.

“This is what probably prompted WHO to declare 2021-30 as the decade of healthy ageing,” he noted while speaking at a recent event titled “The Age of Care” at Bangalore International Centre.

According to estimates, India currently has about 15 crore senior citizens (people above 60 years). This, Kasthuri points out, is a number larger than the combined population of the UK and Australia.

Not only is it a large number, but it is also a growing number, which estimates suggest would more than double to 32 crores by 2050. The elderly would make up 20% of the Indian population. In other words, by 2050, one in every five Indians would be a senior citizen.

The changing social and familial structures combined with the increasing geriatric population underscore the importance of turning the healthcare spotlight on the elderly and shifting from a disease-centric approach to their holistic wellbeing.

Overlooking the ‘person’

Seniors often struggle with not just physical ailments, but also social isolation, digital alienation, disorientation, mobility constraints, relationship struggles, and loneliness. In 2022, the WHO revealed that one in four older people experiences social isolation. This causes a serious impact on their health and longevity, with effects on mortality comparable to smoking and obesity.

“You and I have been trained to look at the body, minutely, including the individual cells, to look at its chemistry and physiology, to study the pharmacology… Nobody taught us to look at the person. In fact, in words, and more in practice, we were told not to allow our emotions to interfere with our work,” said M.R. Rajagopal, Chairman Emeritus of Pallium India, speaking at the event. This approach, he feels, has often been an impediment to integrating palliative care into healthcare.

While the Bioethics unit of the Indian Council of Medical Research says that the duty of a healthcare provider is to mitigate suffering, Rajagopal notes that even basic pain relief — leave alone other aspects of wellbeing — reaches less than 4% of the needy Indians. On top of that, the existing healthcare practices at times add to the suffering, he feels.

A study by experts from the Public Health Foundation of India, published in 2018 in the British Medical Journal, showed that in a single year, about 55 million Indians were pushed into poverty due to healthcare expenditures. Around 38 million fell below poverty line due to spending on medicines alone, the study further revealed.  

“India is among the worst 12 countries according to World Bank data in the matter of catastrophic health expenditures. We healthcare providers are destroying the social, mental and physical health of more than 4% of the population in a year,” Mr Rajagopal criticised.

India currently has about 15 crore senior citizens (people above 60 years) and by 2050, one in every five Indians would be a senior citizen.
| Photo Credit:
SRIDHARAN N.

Many layers

The other way of adding to the suffering, he notes, is by making one spend their final days in ICU.

“I know that intensive care can miraculously save lives. But I also know that in the context of incurable illness, it is the worst infliction of suffering on the human body, mind and spirit,” says Rajagopal, citing data which shows that two-thirds of the elderly get disoriented within 48 hours of admitting in an ICU.

“These are some of the realities that are not easy to talk or think about. We talk about healthy ageing; We say not very meaningful things like ‘age is but a number.’ But we don’t think about the people at the end of their life.” 

Added to the suffering of the patient is the plight of the caregivers, which often goes unnoticed. Associated are other issues such as social, mental and spiritual suffering, anxiety, depression and guilt, social issues including poverty, caste and class, and relationship issues.  

We need to address all these, notes Rajagopal, stressing the need for palliative care and community engagement in the care for seniors.  

Palliative care

In 2014, the World Health Assembly asked its member states and the WHO to strengthen palliative care as a component of comprehensive care. However, Mr Rajagopal notes, even many of the palliative care organisations themselves often end up doing surface-level works that address only the symptoms and not the cause.  

“If we go deeper, we can find really huge issues related to emotional problems, social issues, poverty and so on. Relationship issues, spiritual and sexual issues come at the deepest level. To get there needs a little training,” he notes.

He acknowledges that palliative care has been getting more attention in the country lately. In 2017, the National Health Policy recognised palliative care as an integral part of comprehensive primary healthcare. In 2019 the Medical Council of India added palliative care to the MBBS curriculum. In 2022, the Indian Nursing Council included a 20-hour mandatory module on palliative care for the undergrad nursing curriculum.

While the developments have been promising, in order to fill the implementation gap, it is critical to engage the community adequately, notes Rajagopal.

Community is key

In 2018, the countries that participated in the Global Conference on Primary Health Care held in Astana, Kazakhstan, made a commitment to strengthen primary health care to achieve universal health coverage and health for all. Known as the Astana Declaration 2018, one of the important decisions made during the conference was that the care has to reach people where they need it, stressing the point of accessibility which, in India, is still a major challenge.

“This is very crucial because often we find that the neediest never reach the hospital. For that to happen it is important to involve people in designing and controlling health systems; Because health is not just about hospitals, but it also involves food, agriculture, irrigation, sanitation, transportation and so on,” points out Rajagopal.

Drawing on an anecdote from Kerala, he describes how an elderly man with advanced malignancy lived inside his hut, holding an umbrella whenever in rained as the roofs were leaking.

“What would our healthcare system do for that? Our medical social worker got together a few young people in the community and helped fix it. Those few people did what is 100 times more important than what I did by prescribing medicines. Engage the community and they will find solutions.” 

Competence with compassion

According to Rajagopal, the different pieces of the healthcare equation must include the patient, their family members, volunteers, and all kinds of professionals who can improve the quality of life.

“In the case of many of the elderly, there comes a time when they refuse to come to the hospital. Getting down to their level, listening to them and giving them care is crucial. Making that visible to nursing and medical students is vitally important,” he notes.

Rajagopal also stresses the importance of engaging the community in the actual decision-making processes.

“They know the local issues, they will find local solutions,” he says, substantiating it with the anecdote of an elderly woman in Kerala who underwent a knee replacement surgery. 

“She would have never walked. But one of the volunteers enrolled school students nearby to come every day and walk with her. Doctors also came in, and together they made sure she could walk. Else the surgery would have been only an infliction of pain on her.”

However, he notes that there is often resistance from healthcare professionals to engage volunteers on top of legal and procedural barriers. He suggests a step-by-step process starting with professional acceptance of community participation, followed by public awareness programmes, recruitment and training of volunteers, establishment of core values and ground rules, launch of the programme, periodic evaluation, review and course correction, as an effective way to approach palliative care. 

“The very clear message is that we are not providing the patients charity; it is their right. Competence is vitally important, as is compassion. Respect is often contagious just as a smile is,” he says.