Kerala's elderly population: Embracing palliative care to prevent over-medicalisation of death

Usha, a 75-year-old woman was diagnosed with advanced-stage pancreatic cancer. Her prognosis was poor, and her medical team had limited treatment options to offer. Despite Usha's clear wishes to spend her remaining time at home with her family, she was repeatedly admitted to the hospital for aggressive treatments like chemotherapy and surgeries. These interventions caused her immense physical and emotional suffering, and the medical bills were a significant financial burden on her family. She later passed away.

Usha's case is an example of the over-medicalisation of death. She was subjected to treatments that offered little hope of a cure and failed to improve her quality of life. Instead, they prolonged her suffering and took away precious moments that could have been spent in the comfort of her home with loved ones. This scenario highlights the need for more patient-centered end-of-life care that respects individual preferences and avoids unnecessary medical interventions.

Over-medicalisation of death refers to the excessive use of medical interventions and treatments in situations where they may not be necessary or may not align with the patient's wishes.

Reasons for Over-medicalisation of Death

The over-medicalisation of death can be attributed to various factors, including the lack of accessible and affordable palliative care. This phenomenon also stems from the following:

'Report of the Lancet Commission on the Value of Death: Bringing Death Back into Life' published in 2022 emphasised that excessive focus on medical interventions to extend life, along with disparities in palliative care access and high medical expenses, results in unnecessary suffering for those approaching the end of life. The report advocates for a compassionate model where communities, families, and healthcare services collaborate to provide end-of-life care.

Interestingly, Malayali palliative care physician Dr MR Rajagopal, who is referred to as the 'father of palliative care in India', is one of the report's authors. According to Rajagopal, over the past two decades, particularly in India, there has been a trend where it seems like anyone, who can afford it, is directed to spend their final moments in the Intensive Care Unit (ICU). 

"This practice of prolonging the dying process often comes at an immense cost to the individual, subjecting them to a multitude of medical interventions, including the insertion of tubes and endotracheal devices, significant discomfort, noise, and isolation from their loved ones precisely when they need them the most. Unfortunately, in the absence of readily accessible high-quality palliative care, patients and their families frequently remain uninformed and unadvised about the incurable nature of their illness or disease. As a result, they find themselves rushed into emergency rooms during a critical downturn, doctors are confronted with medical emergencies, and families are asked to permit the transfer of their loved one to an ICU without being presented with alternative options for comfort care," he elaborated the context.

Rajagopal pointed out that European countries are better equipped with resources and facilities for artificial life support compared to low and middle-income countries (LMICs). Nevertheless, nearly 90% of patients with incurable illnesses in ICUs in European countries ultimately discontinue artificial life support due to treatment futility. "While in India, artificial life support measures are withdrawn in less than 30% of cases, even when their futility is evident," he added.

"Similarly, if a family insists on discontinuing artificial life support, they may be asked to 'leave against medical advice' (LAMA), leaving the responsibility of extubation and managing the end-of-life process to the family. The resulting suffering for both the patient and the family, along with the overwhelming guilt experienced by the family, is nothing short of distressing," he noted.

Crucial Role of Palliative Care

Palliative care plays a pivotal role in reducing the over-medicalisation of death by prioritising patient-centered, quality end-of-life care. It achieves this by effectively managing distressing symptoms, fostering open and honest communication, providing emotional and psychological support, and ensuring coordinated care. In addition, palliative care can often be delivered at home, empowering patients and families with the knowledge to make informed decisions that prioritise comfort over aggressive treatments when appropriate. This comprehensive approach shifts the focus from simply prolonging life to enhancing the overall quality of life during the final stages of illness, offering a more compassionate and patient-centered approach to end-of-life care.

Kozhikode-based Sadhna shared her experience of availing palliative care for her father. "My father's prostate cancer had advanced significantly, and in his final days, he was bedridden, had minimal food intake, and spoke very little, all while enduring considerable internal pain. Just two days before his passing, he became restless and had trouble sleeping, constantly shifting from side to side. The palliative care team promptly assessed his vital signs. Their primary focus was on ensuring his comfort, without any pressure to eat, recognising that his bodily functions were gradually shutting down," she said. According to Sadhna, palliative care proved to be a tremendous blessing, with the team responding swiftly and offering invaluable support.

It may be noted that, although Kerala has a robust palliative care ecosystem compared to other states, there are many grey areas due to an inadequate policy-level framework. Dr Rajagopal noted that palliative care is not given the importance it deserves. "Even state-run tertiary hospitals in Kerala do not have palliative care integrated into them, except in some districts. Initially, doctors and nurses need to be trained, but they are not even granted duty leave to receive training in palliative care. State government and non-government organisations are not functioning in cohesion. The draft policy has proposed the accreditation of NGOs at every level to bridge this gap. On the other hand, the public is still unaware of the importance of palliative care in end-of-life care. There should be sensitisation campaigns and advocacy," he said.

Meanwhile, the research gap in palliative care also needs to be addressed. Experts say that local issues and cultural contexts are not addressed in the studies, as they are predominantly conducted in Euro-American countries.

Home Nursing, Hospitalisation Vs Palliative care

Thrissur-based palliative care worker Geemol George elaborated on the distinctions between palliative care, home nursing, and hospitalisation. "In palliative care, the emphasis is on enhancing a person's quality of life, with the patient having the ultimate say. Hospitalisation prioritises saving lives, focusing on the quantity of life. Home nursing is for those requiring assistance due to a lack of family support, in activities such as changing diapers and ensuring hygiene. Palliative care workers play a significant role when specialised care is needed, like changing urine tubes," she said.

According to Geemol, many still hold the notion that palliative care is for the poor, and ICU deaths are for the rich. "Everyone's life has dignity. Patients have the right to decide on their quality of life. Palliative care aims to enhance the overall experience of those nearing the end of life, emphasising empathy, dignity, and a patient-centered approach,' she added.

Kerala's Elderly Population

As per the India Ageing Report 2023 from the UN Fund for Population Activities, Kerala is projected to have a considerably higher proportion of elderly citizens, with an estimated 22.8% of its population falling into this category by 2036. This percentage is notably above the anticipated national average of 15%. In the year 2021, Kerala already had 16.5% of its population belonging to elderly individuals.

Kerala faces the added complexity of what is referred to as the 'feminization of ageing.' This means that, on average, women are expected to live four more years beyond the age of 60 compared to men. This poses a significant concern, particularly for the care and support of elderly women, especially those who may be widowed, possess limited financial resources, and rely on their families for assistance.

The overall prevalence of multi-morbidity among the elderly population is 23.3 percent in India, while it is 52.2 percent in Kerala. Similarly, life expectancy at 75 years in Kerala exceeds the national average by over a decade.  Kerala's proportion of the population in this category stands at 9.9%, slightly above the national average of 9.1%.