Covid-19 and the Need for a Framework to Support End of Life Decision-Making

Blogs · March 24, 2020
Author(s): Akshat Agarwal

Balancing ethical principles with care and communication

Experiences in countries such as Italy have shown that doctors faced with a large number of patients requiring urgent care are forced to choose how to allocate limited health care resources like mechanical ventilation machines. In India, where the scarcity of healthcare resources and their unequal geographical distribution is well-acknowledged, the situation may be particularly precarious.

This piece explores how India’s decision on this critical subject can draw on erstwhile legal judgements on the right to die with dignity. However, there are glaring gaps in legal and policy frameworks governing clinical settings and the doctor-patient relationship in India to effectively facilitate this, as is evident from Vidhi’s research.

Difficult ethical decisions and principles of prioritisation

The spread of an acute respiratory illness like the Covid-19 has exhibited how even well-resourced healthcare systems have faced shortages since the demands for ventilation have far outstripped the availability of such machines. 

In India, rough estimates suggest that anywhere between 30,000 to 40,000 active ventilation machines are currently in operation. Even if more machines were to be manufactured and procured in the short run,when compared with India’s population, these numbers may prove to be highly inadequate.

Experiences with previous influenza-related epidemics such as H1N1 have produced academic literature on the principles of prioritisation that can be applied in such situations.

Lin and Anderson-Shaw point out that the ethical principles of beneficence and justice and the process of triage provide the foundation for healthcare practitioners to make such decisions.

• Beneficence, which implies acting in the benefit of the patient, in situations of epidemics refers to acting for the benefit of all patients rather than individual patients. Justice is understood as distributive justice and means the fair, equitable and appropriate allocation of scarce medical resources.

• Triage refers to the process through which healthcare practitioners prioritise patients needing treatment and care. Triage decisions may be based on a number of ethical justifications. In the context of epidemics, however, utilitarian considerations which imply the greatest good of the greatest number are often applied. This translates into using scarce medical resources for those patients who have the greatest chances of benefitting from the use of such medical resources.

Applying these principles to situations of epidemics, when healthcare facilities with scarce medical resources are overwhelmed, doctors may have to categorise patients and set priorities of medical treatments.

In the Indian context, healthcare practitioners will have to make such decisions if the number of patients needing critical care was to dramatically rise resulting in a scarcity of resources. Factors such as co-morbidities or when the continuation of medical treatment may be non-beneficial due to age or other illnesses etc., will then become relevant criteria in determining whether life-sustaining treatment should be withheld or withdrawn from certain patients. In such situations even if life-sustaining treatment were to be given, it may only buy time and may not lead to effective recovery. Countries such as Italy, the United States and the United Kingdom have already been forced to make these decisions.

Balancing ethical principles with effective communication and provision of care

Shifting the focus of treatment from ‘Cure’ to ‘Care’: While the rationing of healthcare resources represents a complex ethical dilemma the practice of applying principles of priority in such situations is well-settled and healthcare workers on the frontline will be ethically bound to follow them. However, even when difficult decisions to withhold life-sustaining interventions are made, this does not imply that care and compassion towards such patients must also be withheld.

In such situations, the focus of medical treatment will have to shift from ‘cure’ to ‘care’ while ensuring the well-being of patients and their caregivers. Doing so would not only be an ethical imperative but will also be in furtherance of the rights of patients.

In 2018, the Supreme Court of India in a landmark judgement recognised the right to die with dignity as part of the fundamental right to life. While facilitating the withholding and withdrawing of life-sustaining treatment in situations of terminal illness, the intention of the judgement was also to ensure that patients continue to receive care and support even if medical practitioners have reached a consensus on the futility of further treatment. This would be the only means of ensuring dignity.

This care and support translates to end of life care services, which include interventions and approaches including pain relief, symptom control and palliative care. Apart from doctors, a host of other professionals such as social workers, palliative care nurses and bereavement counsellors can play a significant role in such situations.

Effective communication for trust-building: Communication, the cornerstone of trust in doctor-patient relationships, with patients and their families also becomes crucial in ensuring that they are fully aware of the nature of medical treatment and participate in significant treatment decisions. This may not always be easy and may involve multiple rounds of shared decision-making between the healthcare practitioners and the patients and their families.

Adherence to this decision-making process may be especially challenging during pandemics when doctors may have severe demands on their times. This would make the role of healthcare support services even more relevant.

In India, whenever guidelines on withholding and withdrawing life-sustaining treatment from critical Covid-19 patients are made, they will have to be effectively communicated to the public at large to ensure continuing trust in the healthcare system.

Transparent and clear communication of difficult decisions, which is important in all aspects of epidemic management, as has already been widely argued, is even more important in the context of withholding or withdrawing life-sustaining treatment, which stood on shaky legal footing until recently.

Opportunity to develop facilitative policy frameworks for clinical settings

While the 2018 judgement of the Supreme Court was progressive in its intentions by acknowledging the significance of dignity and the need for corresponding care and support to ensure such dignity, its guidelines around end of life decision-making have proven difficult to implement in practice.

India lacks facilitative frameworks that allow healthcare practitioners to meaningfully adhere to both ethical imperatives and respond to the dignity claims of patients from whom life-sustaining treatment has been withheld or withdrawn.

While one sincerely hopes that unlike countries in Europe, the situation in India does not worsen, the Covid-19 epidemic is a stark reminder to address the many shortfalls in our public health system including deficiencies in the legal and policy frameworks surrounding it.

In the coming time, while efforts are likely to be directed towards improving public health infrastructure, emphasis should also be laid upon facilitative policy frameworks that affect clinical settings such as end of life decision-making. This is crucial in intensive care settings and is particularly brought to focus in times of epidemics such as Covid-19 when such units may be overwhelmed.

As Dr Matt Morgan from the University Hospital of Wales recently observed in an open letter to reassure older and more vulnerable groups about coronavirus, “there’s a huge amount of focus on treatment and cures, which is great, but often in intensive care there isn’t a treatment or cure – but there is always care.” In India while healthcare practitioners will continue to provide care on a war footing in pursuance of their ethical obligations, their efforts need to be backed and supplemented by facilitative frameworks that serve us well in ‘peacetime’ as well.

Views are personal.


About Akshat Agarwal:

Akshat is a Research Fellow at Vidhi and currently works with the Vidhi Aid initiative. At Vidhi, he has advised on projects relating to the regulation of the digital economy, privacy and federalism. Currently, he is working on research projects relating to LGBT+ rights, withdrawal of care from terminally ill patients and public health. His research interests include public law, human rights, family law and gender and sexuality. Akshat is an alumnus of the National Law School of India University, Bangalore and was previously an Associate at the leading Indian law firm Khaitan & Co., where he worked with their disputes and regulatory practices. He has been published in peer reviewed journals as well as media outlets such as The Wire, LiveMint etc., and has also contributed to international blogs such as the Oxford Human Rights Hub and the IACL-AIDC blog. He served as the Chief Editor of the National Law School of India Review and was also on the editorial board of the Indian Journal of International Economic Law. Link to full bio