JOIN USCovid-19 and silent suffering
Death comes suddenly for only about 10% of people; for the rest, it arrives as a slow, progressive deterioration or illness which allows for some healing of the survivors’ wounds. But in Covid-19, death comes in the cruellest fashion – sudden and without any healing touch or last hug from a loved one. Even the last rituals are denied here. This leads to what in medical parlance is talked of as pathological grief where normal healing doesn’t happen. 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.
We can offer more sophistry, technology and advanced care but this is meaningless without the healing touch and the personal hand for a fellow human being in distress. We have allowed the global healthcare 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 to 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?
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 Snenscheut said, “In theory, there is no difference between theory and practice, but in practice, there is”. In the real healthcare 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 it is very likely in current practice, then the system may proceed with the consent from your next of kin.
So, some violation of autonomy happens routinely in healthcare in the most advanced systems. In one report from Britain, they discovered that the elderly who were 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 of 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 for a final hug before a cremation. This violation, to a large extent, is justified because mankind needs to be protected. But at least the healthcare 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 healthcare 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 healthcare 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 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-19 treating healthcare professionals and to make essential medicines available.
(Dr Rajagopal is Chairman, Pallium India, and Director, Trivandrum Institute of Palliative Sciences, a WHO Collaborating Centre on Access to Pain Relief. Rattanani is a journalist and a faculty member at SPJIMR) (The Billion Press)