Call for a Safe and Smooth Journey

The harder the journey, the more thorough is the planning and preparation needed. But it is a paradox of modern times that we embark on the most complicated of journeys – the one of serious illness - with practically no preparation.

No life can escape illness and death. Each of us and our loved ones will have to travel that route someday.

This statement would not have been necessary two generations ago when, in the days of joint families and greater community living, nobody needed a reminder that illness and dying are part of life.

A village physician practising indigenous medicine would reach the person at his or her home and provide whatever treatment was possible under the circumstances. If the disease progressed to dying, the older generation would know what to do. They would say, “The limbs are getting cold; better inform all relatives.” A lamp would be lit; holy books read and people would cry and support one another. Even in the middle of the night, young men in the neighbourhood would light a torch of bound dry coconut leaves and walk long distances to inform relatives.

At some point, the elders would say, “The breathing has changed - it won't be long now.” Those grieving would wail loudly in the presence of children, who grew up seeing and feeling what was going on. After death, there would be many rituals, all of which helped the healing process.

All that changed. Now children grow up in nuclear families without ever experiencing a serious illness or death - a transformation most remarkable happened within the last generation.

Not long ago, one night, in an apartment where a mother and her two teenage children were living, the mother had severe chest pain and sweating. Since their father was abroad, the children tried to call an aunt who lived in the same city, but she was unreachable. The children called an ambulance and took the mother to the nearest hospital.

The aunt, who arrived in the morning, started scolding the children for not taking the mother to the best hospital, even if were a bit far. Meanwhile, the mother breathed her last. One of the children was so affected by the event that he quit his studies and is now being treated for depression. This exemplifies today’s reality.

Value of death

A Lancet Commission on ‘The Value of Death’ has been dealing with this subject since 2018. The Lancet is one of the world’s three oldest and most popular medical journals and appoints commissions to discuss global health problems and recommend improvement. Their report on the topic was published on February 1 this year.

The recommendations of the Lancet Commission and Kerala
The following are the most important messages from the report:

• Death has already become a stranger in the modern world; an enemy to be fought at all costs. It is necessary to stop undue intervention of the medical system that prolongs the dying process. Death and dying should be brought back to the community.
• But if the injustice meted out to the dying is to stop, palliative care must be integrated into all healthcare settings according to the 2014 recommendations of the World Health Assembly.
• All healthcare providers should learn to treat suffering; not merely the disease and must know how to treat pain and other physical symptoms as well as to provide support for emotional, social and spiritual suffering. Most importantly, the participation of the family and the community in end of life care must be ensured.
• The public needs to understand that death is not an enemy to be fought at all costs but an inevitable consequence of life that is essential for the survival of mankind.
• The time surrounding death - whether days, weeks or months - can be precious for the family - an opportunity to mend broken relationships and share the love. Most of the remaining life should not be wasted in hospital corridors. Since time is limited, it is important to fill life into it in a way the dying person wants it to.

Globally, the most desirable form of community engagement in death and dying seems to happen in Kerala, India. Hundreds of organisations and tens of thousands of volunteers ensure palliative care delivery in their neighbourhoods. Following this model, there are ‘compassionate communities’ evolving elsewhere in the world, including in the UK. This has to happen globally and death must cease to be a stranger, and should be talked about more.

Kerala has a lot to be proud of about the Lancet Commission statement. But, at the same time, we must remember that we have not yet got it all right. It is true that treatment of pain is available at least 15 times more in Kerala than in the rest of India. Nevertheless, it is also true that the status of pain relief in Kerala is not even one-hundredth of what would be desirable. Unless we are prepared to look at our own inadequacies, we cannot make progress.

There are several Lancet Commission recommendations that should be implemented in India as soon as possible. For one, we have to improve ‘death awareness’ in the community, say for example, with discussions at the panchayat level. For this, the community and the medical system must join hands.

Pain management and end of life care are officially part of the MBBS curriculum from 2019. To put it into practice, medical teachers will have to learn it first. Adequate measures to make this happen will have to start now. Unless doctors in major tertiary hospitals learn the humane end of life care, the newly-qualified doctors are unlikely to practice them.

Let me cite here an example. The National Cancer Grid is a collaborative of more than 265 cancer centres in the country. Leading oncologist Dr C.S. Pramesh, who is advocating humanity into cancer treatment, and his colleagues have created guidelines called ‘Choosing Wisely India’. One of these says that in advanced metastatic cancer unless there is an immediately correctable issue, people should not be treated in intensive care units. The gap between this recommendation and reality is obvious.

Kerala set up a palliative care policy for the first time in 2008. This was revised in 2019. If the revised policy had been implemented, it could have changed the current situation remarkably. But the pandemic overthrew all plans.

Implementation of the revised Palliative Care Policy of Kerala

When the revised policy is implemented, every government medical college would have an effective palliative care department and the speciality would be taught as part of the new curriculum. Students would learn it not only in classrooms but also practice it at palliative care centres. And, as recommended in the revised policy, when the coordination of non-governmental organisations and governmental agencies is complete, patient care will drastically improve.

Let us hope that all this happens without further delay. With the visibility given to palliative care in Kerala by the Lancet Commission, we can expect a lot of visitors from various countries to come over to see first-hand and learn the end of life care from us. Let us hope we will be able to have in place a compassionate end of life care practice including patient dignity and community involvement making it the ideal model in every sense.

(The author is chairman of Pallium India, director of the WHO Collaborating Centre for Pain Relief at Trivandrum and one of the commissioners of the Lancet Commission.)