COVID-19 and the silent suffering
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Death happens to everyone; but except in about 10% people where death comes suddenly, it happens with a slowly progressive illness which allows for some healing of the survivors’ wound. But in COVID-19, death comes in the cruellest fashion, a loved one snatched away from the family in one instant, never to be seen again. Even the healing that is associated with a final hug and the rituals to follow is denied here. Medical parlance talks about pathological grief where normal healing doesn’t happen and lakhs are left in emotional sinkholes. A support system has to be offered right now—not only for the next-of-kin to embrace acceptance and closure but also for the dignity of the dead.

In our attempt to offer more sophistry and technology and advanced care, we have forgotten the healing touch, the personal hand and the idea of care for a fellow human being in distress. We allowed the global health care system to deteriorate to an entity that cures many diseases but ignores human suffering completely, and unfortunately, adds to suffering significantly.

Health is defined as “complete physical, social and mental wellbeing and not merely the absence of disease or infirmity.” If the treatment offered for a disease does cure it, but leaves the person a nervous wreck unable to function, and if it leaves the family financially destroyed, even denying education to the next generation, is it improving health? On the other hand, is it not actually destroying health?

COVID-19 has brought many inequities to the surface. It has forced us to see things including death that so many of us so far had successfully avoided looking at. For a generation or two, we successfully denied death as the inevitable consequence of life. Health care systems have consistently kept away from discussing it with their rhetoric of war when “fighting” disease. In the process, death has become a stranger to be feared by everyone and an enemy to be fought by the medical system even when the fight is clearly futile.

The four fundamental principles of medical ethics are autonomy, beneficence (doing good), non-maleficence (not doing harm) and distributive justice. In the context of COVID-19, we have not had a lot of opportunities to discuss these much but even amidst all our busy activities, it would be good to take a good look at them.

Someday when you are ill, you are likely to be taken to a hospital. Ethically, nobody has a right to do anything to your body without your expressed permission.

That is theory. As Snepscheut said, “In theory, there is no difference between theory and practice, but in practice, there is”. In the real health care world, once you are on a trolley, you are likely to be wheeled into room after room, from lab to imaging room to specialist after specialist, and you become an insignificant entity in the whole exercise. If you have to have an operation, your consent may be sought; but if you are a bit drowsy at that time, as is very likely in current practice, then the system may proceed with consent from your next of kin.

So, some violation of autonomy happens routinely in health care in the most advanced systems. In one report from Britain, they discovered that elderly patients admitted for a short-term medical problem were routinely catheterised (to empty the urinary bladder into a bag, so that they do not go to the toilet to urinate). This is because there were not enough nurses or support staff to accompany the seniors to the toilet! The result: independent people became dependent patients and usually never returned to a pre- hospitalisation life. If those are sins of commission, in India we have more sins of omission.

This routine violation of your right over yourself is amplified many times in COVID-19. First, autonomy is restricted because understandably some such restriction is essential for the greater common good. This means separation from family, possibly never to see them again. The family is denied the right to a final hug before a cremation. This violation, to a large extent, is justified because mankind needs to be protected. But at least the health care system needs to be cautious that such a violation is happening and needs to minimise its impact. We cannot be oblivious to such monumental excesses.

Beneficence and non-maleficence are rather obvious principles of ‘doing good’ and ‘not doing harm’. While isolation would be ethically acceptable, it is vitally important to ensure that the medical system minimises harm. And in this context, we should not be thinking only about treating the disease; there is no cure for the disease anyway. We should be thinking about the well-being of the person and for this, mental and social well-being are vitally important.

If health care is physical, social and mental well-being, doctors and nurses need to be educated in scientific management of pain, breathlessness, delirium and other manifestations of COVID-19. This would have happened automatically if medical and nursing education had included palliative care; but it is only from 2019 that at least a part of it was included in the medical curriculum. And apart from doctors and nurses, certainly, a category of health care workers are needed to look after the social and mental well-being. The least we can do is to find out how the patient feels and to connect the person over a smartphone with relatives periodically. And also identify anxiety and depression that may become so bad that it may have gone on to a state of a disease needing medical treatment.

The principle of justice demands fair allocation of available resources including the government kitty and the time of healthcare professionals. But fortunately, giving attention to wellbeing is not expensive. Services of medical social workers or counsellors with some online training will cost a fraction of what it costs to engage doctors. And it will actually reduce healthcare costs by freeing up the time of doctors and nurses to a significant extent.

The one major difficulty would be the resistance to change. But such change has already started and we need only official acceptance and an action plan. Over 300 doctors and nurses have already had online palliative care training in COVID management in a programme conducted by the WHO collaborating centre at Trivandrum under Pallium India. The national health missions of Uttarakhand and Manipur have already taken an initiative in the matter.

The World Health Assembly resolution 73 on 19 May 2020, asked all member countries to include palliative care in their COVID-19 treatment plans. We seem to have been too busy to give much thought to this. But for relieving the suffering of those infected with the virus and for the mental health of the survivors, the bereaved and of the next generation, a policy decision is needed to follow the World Health Assembly resolution, to give basic online palliative care education to COVID-treating healthcare professionals and to make essential medicines available.

Dr. M R Rajagopal is the Chairman, Pallium India, and Director, Trivandrum Institute of Palliative Sciences, a WHO Collaborating Centre on Access to Pain Relief.

Jagdish Rattanani is a journalist and a faculty member at SPJIMR.

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