Dr M R Rajagopal is the founder and chairman – Pallium India, a palliative care NGO based in Kerala, India.
Often referred to as the ‘Father of Palliative Care in India’, Dr Rajagopal is the prime mover in the development of National Standards for Palliative Care in 2006-08. He was also instrumental in bringing about the amendment to the Narcotic Drugs and Psychotropic Substances (NDPS) Act of India that enabled access to pain relief to millions.
Dr Rajagopal is of the view when support is given to COVID-19-affected people to make realistic, not idealistic choices, the disproportionate demand on irrational aggressive life support measures will drop and the health systems will be able to give optimal care to those who will benefit. Edited excerpts from his conversation with FM
Why do you think palliative care is highly relevant to the COVID-19 pandemic?
Palliative care is management of “serious health related suffering”. Advanced COVID-19 causes pain, breathlessness or delirium and agitation that can be intensely agonising. Breathlessness, one of the commonest symptoms, can be a terrifying experience. Many people get deliriums, and hallucinations may follow. Anyone who gets agitated thus is undergoing severe suffering.
The uncertainties that COVID-19 causes leads to severe anxiety. Intense anxiety necessitates treatment like a disease. Many people go into depression, even losing the will to live. Thirdly, guilt arising from thoughts like, “if only I had been more careful” is another negative emotion. The resultant fear can cause the person to lose control over the mind.
Ordinary human beings are ill-equipped to handle lack of social contacts. We all need human interaction. In this case, the patient may be torn away from the family in an instant with the feeling, “I may never see them again”. No one is prepared for dying if conditions take an adverse turn, with no time for a goodbye, for unfinished business or even one last look at loved ones.
Addressing these layers of suffering with humanity, compassion and dignity is the essence of palliative care. Pain is not looked upon as a side-effect but as something to be treated effectively. In fact, it gets done better in western countries because medical students learn pain management. In India, almost unbelievably, modern pain management became part of the MBBS curriculum only from 2019. Simple medicines like paracetamol and ibuprofen sometimes become necessary in combination with more powerful painkillers and opioids like morphine. Doctors are largely unaware of opioids, or they are unavailable.
Similarly we seek to care for the patient, not just cure them. Comforting them in distress through communication and emotional support, basic tenets of palliative care, were not part of the medical curriculum till 2019.
Palliative care is extremely relevant currently as teaching the management of symptoms like pain, breathlessness or agitation and empowering the doctor or nurse to provide emotional support within the constraints of isolation and personal protection equipment (PPE) can greatly assuage patients’ suffering.
Almost half a million people have died of COVID19, but there are no estimates of deaths caused by lockdowns world over via restricting access to essential health services. End-of-life care is as important as, if not more than, caring for survivors. Palliative care acknowledges mortality, the most human of conditions. While nothing could replace another reunion with the family when rational medical treatment reaches its limits, doing what’s possible to make death as physically, emotionally and spiritually comfortable is as much a healthcare worker’s duty as making life comfortable.
The extremely high infectivity of SARS-CoV-2, coupled with a lack of treatment to cure and a vaccine to prevent COVID-19 obviously creates an “existential uncertainty” among the people. How exactly can palliative care come to help?
All of us are going through existential uncertainty. The triggers that cause it and the degree to which it affects us vary. This loss can manifest in various ways:
1. Facing uncertainty: While only some of us are COVID-19 infected, all of us are affected. Global order and priorities have changed, being unsure of what the future holds is unsettling.
2. Losing connection: Many among us are quarantined, stranded in an alien land or isolated because of infection. This separation for prolonged periods with familiar places and people can be very distressing.
3. Losing faith: Religion is a strong source of support for most. Getting infected, losing a loved one or suffering dire fallouts like losing income or one’s job can lead one to question higher powers, “How could God do this to me?” shaking up an important pillar of support.
4. Losing purpose: The current environment can be very frustrating, especially for the less privileged with fewer coping mechanisms. One can lose hope, and face the question: “What is the point of living like this? I might as well be dead”. Ones who are actually dying from being infected or affected may pass away with unsaid goodbyes, unfinished duties and goals, with no legacy to leave.
Palliative care acknowledges and addresses such existential issues, beyond attending to physical pain and suffering.
Going by current trends, India will soon see an exponential rise in the number of COVID-19 cases. Do you think the country’s healthcare system is equipped to handle the surging number of infections?
We have seen that healthcare systems, even in prosperous western countries, are not equipped to handle a sudden crisis of this scale. A cursory look at the news shows that exponential rise is already here. Like the rest of the world, we are not equipped to handle surging infections. India’s composition and its status as a low-to-middle income country (LMIC), with limited resources and considerable inequities, puts us at a further disadvantage. I’ll concentrate on what can be done in this setting rather than what cannot.
Comprehensive healthcare includes preventive, promotive, curative, rehabilitative and palliative care. Within our constraints, the more we can accommodate all five, the more resilient will our health system be. Of these, palliative care has probably received the least attention. Recently the WHO exhorted all member countries to include palliative care in COVID-19 response through World Health Assembly 73 Resolution on 19 May 2020. If adopted, in addition to relieving the burden of suffering, this will help the healthcare system to deal with the huge numbers. One way is through triaging patients for appropriate management. Typically, triage is done by a team other than the treating clinicians. For example, a nurse and a doctor would make an evaluation of each patient’s condition. The evaluation will take into consideration the age and associated illnesses and the general condition and make an informed evaluation of potential outcomes. This information is conveyed to the patient and family not only with compassion but also with honesty, allowing and assisting them to make an informed and appropriate decision. Those with good chances of recovery are offered all aggressive life support treatment. However, where inappropriate, prolonging pain on ventilators and other intensive treatment can be replaced by physical, mental and spiritual comfort.
Ventilators are not the answer to all COVID-19 cases. It takes a highly sophisticated device to mimic our rhythms of breathing and keep organs alive. Ill calibrated contraptions can do the opposite, starting by damaging the lungs. Even the finest of them are extremely painful and require appropriate sedation to even be bearable. Most importantly, there is no evidence of them being effective in the current context. A study of the outcome in 12 New York hospitals found that of the people whose treatment has come to a logical conclusion (either discharge from the hospital or death), survival was only 11.9% among COVID-19 patients. 88.1% of them succumbed while on treatment on a ventilator.
Hence, if on triage, the person is found to have a next-to-no chance of recovery, they should receive counselling which would help the person to accept the reality. Truth should never be given like a bombshell; it is an essential therapeutic tool if given with compassion. The person is then given an option to choose compassionate palliative care rather than aggressive life support measures which by itself inflict a lot of suffering. Our experience with many people receiving palliative care tells us that not only do people choose realistic treatment when helped by palliative care, but the level of acceptance is also high and most people make judicious choices.
When this kind of support is made possible and people make realistic, not idealistic, choices (without a decision being forced on them), the disproportionate demand on irrational aggressive life support measures will drop and health systems will be able to give optimal care to those who will benefit. Trust between patients and doctors will increase when unscientific expectations are replaced by honest communication.
Needless to say, it will be necessary to spend time with the family albeit through technology. Can an ill-equipped health care system handle this? That is precisely what it should be doing to become better equipped by taking the load off hard-pressed doctors giving futile, aggressive treatment.
But to ensure this, all COVID-treating healthcare providers need to have basic training in palliative care. In the current crisis, short courses are available, which any clinician can do by spending one hour and fifteen minutes online for five days, backed up by e-guidelines.
Lastly, it is not enough just to train health care providers; they must have access to the required medicines. Fortunately, almost everything that we need to relieve suffering in these people is inexpensive. But, yet some of them are usually unavailable, particularly controlled medicines like morphine for pain relief. The legal barriers to their availability to health care institutions were overcome in 2014 by Narcotics Amendment Act. All that is necessary is to implement the existing law and put some procedures in place.
In what ways can the present healthcare system incorporate palliative care into COVID-19 treatment protocol?
The first requirement is to acknowledge that this is a need. Secondly, have a realistic strategy based not only on numbers and figures, but also on human beings and their suffering. All COVID-treating doctors, nurses and other healthcare providers like medical social workers need to learn the basics of palliative care. Triage teams are needed to screen incoming patients and decide on what kind of treatment is needed (care at home, aggressive life support in hospitals along with palliative care or only palliative care).
World Health Assembly, the decision making body of World Health Organisation, whose executive board is now chaired by our Union Health Minister Dr Harsh Vardhan, has already called upon all member countries to include palliative care as a part of COVID care. The required expertise is available in the country to facilitate this, and the required medicines are available at low cost. All that is necessary is the policy decision and implementation.
How can a treating physician or an intensivist in critical care facilitate palliative care to COVID-19 patients? What models do we have to emulate for this?
Medical and nursing education did not include any meaningful palliative care till 2019. Hence, there is a gap that needs to be overcome by online in-service training. There is no other way.
We cannot draw upon direction or guidance from the west in this matter because in those countries, the average doctor would know the fundamentals of pain relief and basics of palliative care, including how to communicate with the patient and family. This will be a new learning in this country.
When such training has been given, apart from the obvious benefits to the patient and family, the doctor or nurse will find that life is easier, satisfaction from work is more and one learns how to connect and communicate even with full possible protection equipment, “I see you are breathless; I see you are anxious; I will do my best for you”.