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- The Lancet Commission on Death report, released last month, asked countries to make policies to prevent over-medicalisation of terminally ill patients.
- M.R. Rajagopal, one of the report’s authors, said we have created a generation of people that is still grieving the loss of family members to the second wave of COVID-19 in India.
- According to him, we urgently need a national palliative care policy to tackle the psychosocial needs of the kin of the dead.
New Delhi: The Lancet Commission on Death published a detailed report on January 31, titled ‘Value of Death’. The name may sound strange, but it puts the spotlight back on one of the more ignored aspects of medical science: palliative care.
Such care focuses on treating terminally ill patients by addressing their suffering in a comfortable setting, instead of confining them to intensive care. The latter happens even when health workers know a cure is impossible.
It also looks into the needs of a patient and her caregivers that are beyond the physical. These needs may be psychological, social or even spiritual. The report assumes special importance for India, where people died in great numbers during the second COVID-19 wave.
The Wire Science spoke to one of the authors of the report, Dr M.R. Rajagopal. Dr Rajagopal has decades of experience in palliative care and is the chairman of a civil society group called Pallium India.
The interview is presented in full below, with light edits for clarity. The questions are in bold; the editor’s comments are in square brackets.
What are the key takeaways from the Lancet Commission’s report vis-à-vis India?
The problem [of lack of palliative healthcare] is much worse in India than in the majority of countries.
There are two elements of suffering at the end of life. One is suffering like pain, breathlessness, restlessness, agitation, etc., associated with an illness.
As far as this particular suffering goes, high-income countries do well because the majority of them have good palliative care services. The population is able to avail them also. The emotional and social issues are also dealt with.
- ‘The over-medicalisation of death is a global phenomenon but it is much worse in India.’
In India, less than 4% of the population has access to any palliative care. Also, in India, the majority of healthcare [expenses are] out-of-pocket. This makes poor people poorer. It can have devastating consequences, like children dropping out of school. So here we have social and psychological issues involved.
Besides, in the management of ailment itself, in India, the entire medical process is more focused on the disease per se. And not the suffering – like pain – that come with it. So too often, the suffering gets ignored. Even the best hospitals in India do so. This paper tackles these issues and thus India has a lot to learn from it.
What about end-of-life care? Does India fare worse in that also?
In India, when people land in ICUs, the family can see them only for a few minutes in the morning and the evening. The patient feels completely disconnected. You die alone.
The over-medicalisation of death is a global phenomenon but it is much worse in India. In the West, if the treatment seems to be futile, the doctors withdraw artificial life measures. Whereas in India, less than a quarter of people have artificial life support measures withdrawn even in the face of futility.
In other words, three-fourths die on the ventilator. The dying process gets stretched to hours or days, weeks or months. The person has to die anyway but she dies in suffering. It is painful to be in the ICU. Plus, with that comes the isolation part.
During India’s second COVID-19 wave, almost entire families got wiped out in certain cases. Did we fail by disallowing them to grieve with their relatives, and leave them to grieve alone?
Absolutely. Absolutely. Absolutely.
In COVID, there was no time to get used to the process of dying. Just one look at the dead body and that’s it. The normal rituals, the touch of the body, the extended family arrival… they all have a healing power. All that got lost.
Grief occupied another dimension at that time. In medical science, we call it ‘pathological grief’, wherein it is difficult to move on for a grieving family member even after 6-9 months.
The World Health Assembly, in May last year, passed a resolution asking palliative care be included in COVID-19 treatment. We also wrote several letters to the Central government.
They were understandably busy fire-fighting. At that time, they did not have time to attend to all this. That is over now. But still no attention is being paid to lakhs of family members who are grieving the loss and living with the suffering that is invisible.
We started virtual courses for healthcare providers in providing palliative care in COVID-19 (at Pallium India). We have another free sukh-dukh1 helpline for common people in grief. But unless the healthcare providers are also involved, people in grief are not going to take the initiative to call.
If we had included palliative care in COVID-19 in India, what difference would that have made?
If palliative care had become a part of routine care, we would have active plans to encourage virtual conversations. But what we saw was that patients were rarely allowed to talk to family… The mobile phones were seized. We would also have had effective management of the intense body ache, breathlessness and other symptoms with which they die now.
During COVID-19’s second wave in India, we saw people losing family members in hordes. That doesn’t usually happen. Losing one member at a time and losing many at a time are different. How will they be doing now?
If the healthcare system takes responsibility, we can start even now because we know who died, when and where. We can find out how they are living. How many have become orphans and what kind of support do they have? How many are left with mental illness? How many women got abandoned?
- ‘We have created a generation of people who have been abandoned and orphaned. And we don’t even know them.’
Even if the government does not have financial resources to do follow-up exercises, connecting grieving people with the social support system and NGOs would be of help. So even now, we can do a lot.
Those in need of help will not call. We have to have the local systems identify them and reach out to them. And try to resolve their social and psychological problems.
What will happen if we don’t do this? What do we stand to lose?
We would have already created a generation of people with a high incidence of mental illness and they will live with that. We have created a generation of people who have been abandoned and orphaned. And we don’t even know them.
The paper talks about the ‘Kerala model’ of palliative care. How easy or difficult is it to put that in place in other states in India?
What the Kerala model does is to encourage local communities to take responsibility for people ill with serious health-related suffering (not for treatment but to attend to their suffering). It started as a non-governmental movement. The movement grew phenomenally; the state government stepped in later.
It created a palliative care policy so that every panchayat has, at least, one nurse at primary health centre level providing full-time palliative care. The system is not completely perfect yet, but at least in concept government employees should work with NGOs. The government, the doctors and NGOs work together.
So the person who is lying paralysed in a house, she has someone to care for her. If the family is starving, somebody gives food, so on and so forth.
The culture of caring for people, who are in serious distress, is thus back. The society and the government are working together to make death socially accepted phenomena rather than leaving the dead to the ICUs. There is no reason why it shouldn’t be the norm in other states.
How many states have a palliative care policy in the first place?
Other than Kerala, Karnataka has one but it is not implemented. Maharashtra developed a policy but did not bring it to completion. Others don’t have yet.
But the National Health Policy of 2017 includes palliative care. Already, national level and state level trainers have got training in palliative care. The next step is to ensure these trained people, in turn, train healthcare workers within all the states. This is yet to be done.
Since 2019, palliative care has been a part of the MBBS course in India. So until then, how to care for the dying was not even taught to medical students. They just got training to diagnose and treat the disease; just continue treating it even if the chances of cure are very low.
But this is only the beginning. There are more than 500 medical colleges in the country. Who is going to teach in all these places? So we are making teaching modules but it will take a whole generation for all of this to become part of general practice.
Are doctors taught in India about dealing with the very phenomenon of death and about communicating it with family members? Also, health workers were clearly exasperated during COVID-19 on how to communicate deaths…
The answer was a big ‘no’ until 2019. The phenomenon called death was never discussed, it was never a part of the curriculum. I never studied it. From 2019 only, all of it got included.
- ‘Death has become a stranger, almost an enemy.’
What exactly are they taught as palliative care now?
In end-of-life care, budding doctors are learning now how to identify elements of suffering and prioritise addressing those also. They get to know the basics of communication with the person who is dying and his/her family, too. [They are taught] what is ethically good in end-of-life care and what is not, like when not to put them in ICUs and isolate them, when we know it is futile. They get lessons about the attitude of compassionate care.
Death as an idea is something our society can’t find easy to grapple with. We want to delay it as much as possible, even beyond the realm of science. There’s a need for awareness or a policy framework for death as a real idea.
In 2016, the government framed a draft law for end-of-life care. The government had put it up on the website for public comments, only to drop it later. We need a national policy. Law is necessary but that alone will not help. Along with that education for healthcare professionals and the public, at large, for different purposes is required.
In the aftermath of COVID-19, vis-à-vis people who lost more than one family member in a short span of time, what do you think India should be doing on the palliative care front?
There is a need for a national palliative care policy for the entire country. The states should be able to tweak it according to their requirements. But to your question, I must add it is just not about COVID-19 or any other pandemic. Mass deaths can occur due to tsunamis, earthquakes or a plague.
When there are crises such as these, we should not wake up only then. There has to be a system, policy and process beforehand to tackle suffering in any humanitarian crisis.
Finally, as somebody who has invested a lifetime in palliative care, what is your prescription for a national policy?
I have four specific points to make.
1. Death has become a stranger, almost an enemy. So death literacy is required. More and more public discourse should happen and the media must frequently talk about it, like you are doing.
2. There should be palliative care laws and policies at the Centre and state levels.
3. Health departments and healthcare policies in hospitals will have to accept end-of-life care as something different from isolating people in ICU units and adopt friendly policies towards them.
4. Civil society groups working in healthcare must include palliative care in their mandates.
Roughly, ‘wellness and sorrow’ in Hindi↩