Life expectancy has been increasing globally over the last century due to a combination of improved social conditions and rapid scientific advances. The former improved sanitation, nutrition, education, and economic security, while providing safer dwellings, transport and lowering crime. The latter provided a deeper understanding of the human body’s structure and functions, identified causal agents and mechanistic pathways of disease, and accelerated the development of medical technologies like vaccines, drugs, and devices. The spurt in knowledge creation and translation greatly amplified our ability to protect ourselves against a variety of disorders through prevention or cure.
While increased life expectancy (LE) has been a cause for celebration, preoccupation with lengthening human life has made us less attentive to the quality of life, functionality, and wellbeing across the life course. The gap between LE and healthy life expectancy (HLE) has been around 10 years in India over the past three decades. A similar pattern is seen in many other countries. Sadly, the gap between LE and HLE is wider among women than men. Women’s biological advantage of longer LE is dissipated by adverse social conditions and neglect by the health system.
Lack of attention to quality of life, encompassing functionality and wellbeing, has been due to difficulty in arriving at globally acceptable definitions and finding widely-accepted quantifiable measures. Economists and social scientists to public health researchers and policymakers have been challenged by disagreements in defining and measuring the ‘soft’ attributes of health. They are far more comfortable with measuring death as an easily identifiable end point and estimating the years of life saved by an intervention.
It is often said that ‘what gets measured gets done’. What is left unsaid is that ‘what is easy to measure gets measured often’. That metric then gets embedded in policy for determining resource allocation for health programmes and becomes the acid test for their monitoring and evaluation. The cycle perpetuates itself in health policies, with ‘how many lives will be saved’ being the only question asked, while the question ‘how many lives will be improved’ by an intervention seldom guides resource allocation.
Attempts have been made to incorporate preserved quality of a healthy life, or its converse—‘disability’ associated with disease or injury—into health metrics. Disability-adjusted life years (DALY) is a summative measure of the years of life lost due to premature mortality from a health disorder, as compared to the life expectancy of a ‘standard’ population, and years lived with disability caused by that disorder.
To ensure comparability across health conditions, the degree of disability is graded for each condition. Weights attached for grading the severity of disability are generated from expert assignments and opinion surveys conducted in a general population. Views of persons with lived experience of the specific disorder were not ascertained because of an apprehension of biased estimates. As one critic of this method commented, “Imagine only men grading the severity of labour pain!”
Quality-adjusted life year is another measure. It estimates the number of life years affected by disease or injury related decrement in the desired quality of life (QOL). A number of research instruments emerged for measuring such perceived reduction in quality. They have not always been reproducible across populations. There is a need for an instrument which retains elements of objectivity and cross-population comparability while being context-relevant, culturally adaptive and respectful of equity across population groups.
Over the past three decades, DALY has emerged as the most widely adopted measure of loss in health status. While disability (reduction in QOL) was incorporated into DALY, years of life lost still dominated over years lived with disability in most disorders. Mental health disorders were a notable exception where distress outweighed death. Even then, these disorders were not included when the UN convened a high-level meeting in 2011 to adopt a political declaration on the urgency of actions needed to prevent and control the rapidly escalating global threat of non-communicable diseases.
Neglect of QOL has been prejudicial to the allocation of health system resources to several other health conditions. Persons with physical disabilities are deprived of opportunities to lead socially engaged, economically productive, and emotionally satisfying lives if the health and social systems do not provide the needed support and opportunities. Many non-fatal disorders of childhood get neglected despite being correctable, with avoidable limitations to physical, psychological, and social functions. Sensory loss (vision and hearing impairment) gets delayed recognition despite the tremendous value of timely correction.
With growth in life expectancy, population ageing has brought fresh attention to QOL. The goal of ‘healthy ageing’ is to ensure that the elderly stay fit and functional rather than becoming frail and feeble. The elderly need not be limited in function if the health system pays attention to their physical and psychological needs, ensuring responsive health and care services.
A positive intent to promote functionality and enhance the quality of life rather than a restricting ambition to reduce manifest or anticipated disability is now moving to many health domains—such as support for persons with physical or mental disorders, survivors of cancer or strokes, or persons with sensory impairment. Climate change and conflict are generating a host of non-fatal challenges to physical and mental health, besides loss of lives. Even the pandemic has left a trail of suffering, casting the dark shadow of ‘long Covid’ on many survivors.
The World Health Organization is now energising efforts to preserve and promote ‘functionality’. This is an umbrella term for all body functions, activities, and participation in society. It encompasses physical, mental, and social dimensions of the unimpeded ability to perform daily tasks. Both intrinsic physical attributes of health and extrinsic socio-environmental factors interact to determine the attribute of ‘functional ability’.
Health and social systems must espouse efforts to improve the functionality and wellbeing of those who are alive despite health disorders. Extending years of life is a laudable objective, but that should not detract us from aiming for a good quality of life, too.
K Srinath Reddy | Chancellor of the PHFI University of Public Health Sciences and Chair of the Centre for Universal Health Assuance at the Indian School of Public Policy
(Views are personal)
(ksrinath.reddy@phfi.org)