By Ayesha Ahmad
As a philosopher by training, specialising in ethics and working in global health, I research vulnerability in complex conflicts, humanitarian crises and disasters in contexts besieged by silencing and marginalisation. When the COVID-19 outbreak began, my priority was the impact of the public health burden on weak and fragile systems in my current research projects in Afghanistan, South Africa, Kashmir (India), Turkey and Pakistan.
I had not imagined that I would confront ethical dilemmas of such magnitude that they mirrored the inequities and injustice of the above countries, which contrast, in typical times, so greatly with my own country, the United Kingdom.
I had to focus, as the Responsible Individual, on the well-being and protection of 61 patients in a Care Home in a Welsh village. When my family decided over thirty years ago to move across the border and establish ‘Ty-Nant Care Home’, as a very young child, I could only be bribed by the promise that we would have an operating theatre dazzling with the bright lights and machinery that characterised the stories of my parent’s anaesthesia background. I soon garnered that there would be no such clinical apparatus, and that Ty-Nant resembled more of a large stately home than the hospitals I had grown affinity with.
This narrative is important because it captures the vortex between the clinic and the home; a peculiar space within societal and cultural notions of health and illness that has gradually been defined in its own right with the advocacy of organisations working with the elderly, persons with disabilities, and palliative care.
Yet, as a modus operandi for providing nursing care to our patients, we are displaced in health policy and resource provisions and have been as existentially isolated as much as we are physically. The wounds of what we are experiencing now during the COVID-19 crisis are deeply embedded.
Despite the governmental perception, our patients are not all end of life. Of course, we offer palliative care when necessary, but our patients are individuals that are living the legacies of changing landscapes of health and illness during the course of their life. We provide complex clinical care and are guided by moral and ethical frameworks that give rise to recognising their agency and authenticity as well as our accountability to protect our patients from harm and undue suffering. Aside from identifying suspected COVID-19 cases, we need to provide continual care, which requires interaction with secondary care services. Such decisions carry risk during a pandemic and impact on the decision-making within ethics of care and human rights frameworks; hard choices that were preventable if there had been capacity for adequate protections to be implemented in hospitals for our patients.
Furthermore, mandatory testing policy that is implemented after an epidemic has peaked and in the aftermath of the deaths of over 12,500 care home patients in Care Homes and whilst in hospital, is a smokescreen for every ethical challenges we overcame in the last three months. The sight of army personnel on the Care Home grounds transporting redeployed health professionals as the designated testers, rather than the familiar faces of our qualified nurses, was a juxtaposition to the ethos of nursing care; a bespoke care that is underscored by the ethics of relationality between patients and staff, and integration of life-narrative histories into the self-identity of those at the fringes of our society.
The testing arrived at a time that echoed of belatedness. Rather than be implemented at the point of clinical need, the tests were performed as an act of consequentialism, yet the morality of consequentialism fails when the decision-making is retrospective and not conducted with the view to protecting the health of the individual or the collective body of individuals in a shared care setting.
Although all tests were negative, challenges of the pandemic continue and are expressed in the ethical reflection of our encounters with our patients; some of whom are entirely dependent on the care that is provided continuously to sustain their lives. Such encounters are the signature of humanity and during a pandemic, when governmental policies exacerbate the vulnerability of the marginalised, Care Homes are required to make use of their isolation.
Providing care when feeling marooned on an island can liberate us of the harmful risks to our population, but at the same time, sever us from reaching the shores of further services that we require.
We should not be at the trade-off between distress and death.
Yet we are, and I call for greater analogue of Care Home narratives to log the distilled nature of our patients experiences during a pandemic, so that as we move forwards, their interests are not lost, or abandoned, when engulfed by the socio-cultural as well as political discourses that obscure us from view in general healthcare systems during a pandemic.
Author: Ayesha Ahmad
Affiliations: St Georges University of London; Institute for Global Health, UCL.
Competing interests: None declared
Social media accounts of post author: Twitter: @AcademicAyesha