Author: Dr Krithika S Rao (Shinde)
Assistant Professor at Dept. of Palliative Medicine and Supportive Care, Kasturba Medical College, Manipal, MAHE, Manipal, Karnataka
A young and aspiring engineer who was already battling advanced cancer was also unfortunately diagnosed with severe COVID-19 illness. He breathed his last all alone, without his parents or his younger brother (an aspiring doctor) by his side. The distressed parents were unable to fathom the loss of their son, while his younger brother felt helpless at being unable to neither help nor be by his brother’s bedside when he needed it the most.
Woefully unprepared in the midst of a pandemic, our priorities are to now minimize the losses; both human and economic. The state imposed lockdown during the first wave of the pandemic was to prevent the transmission of the virus within the community, while the lockdown imposed in the second wave was to mitigate the risk of transmission within the community. Both of which ultimately resulted in people being physically and socially isolated. The continued encroachment of the disease within the community, the disruption to one’s livelihood, the restrictions on one’s basic freedom, and the personal sacrifices one made for the collective good has deepened the suffering within the community and has also profoundly changed the way in which we care for the dying. While we wishfully hope to recover from this pandemic one day, every effort must also be made to prevent additional suffering.
Those who are hospitalised due to COVID are left alone in their rooms with “spacesuit-dressed” health care workers communicating with them from behind their masks and face shields and with minimal or zero physical contact. The foregone opportunity of having a face-to-face communication with their loved one has resulted in a significant number of these patients to die alone and away from their loved ones without saying goodbye or sharing one final moment with their loved ones.
Pressed for time and resources, Doctors are able to only provide a quick update to the concerned families, leaving only very little room for questions. For the loved ones, the doctor is therefore unfortunately, just a “voice on the phone”. Exhausted, overwhelmed and distressed healthcare staff across the globe, are in dire need of psychological support or proper rest for themselves and yet continue to nurture and care for their worried, sick and lonely patients and their families.
One of the most overlooked spiritual needs during this COVID-19 crisis is our gross inability to ensure a peaceful death to those who are suffering and our helplessness in providing comfort to the grieving or bereaved families.
The unfortunate price paid for adopting the well intentioned ‘No visitor’ policy is the lack of closure for families and the additional distress due to their incapacity to perform the last rites and rituals for their loved one. The policy which was intended to create a safe environment by curbing the spread of infections, ironically created a lonesome and fearsome environment for these vary patients as it curbed them from meeting their source of spiritual support; their families, friends and other loved ones.
Spirituality is an integral part of being human (Papadopoulos, 1999), and spiritual care is a key element of holistic care that is pivoted around compassion and cultural competence (Papadopoulos, 2018). Those who are seriously ill and those who are dying are known to find comfort from a prayer, or by just being in the presence of someone who can hold their hand and be with them as they take draw-in their last breath These unprecedented times have brought along it with a bundle of hurdles that need to be successfully navigated before being able to provide end-of-life care patients with holistic care, which includes spiritual care. The overwhelming workloads, the lack of time and trained staff, the limited awareness about the spiritual needs of patients, the fear and anxiety of getting infected, one’s personal discomfort with the subject or the fear of imposing one’s own religious or spiritual views are some of the factors that contribute towards this challenge.
The need for spiritual care is very broad and it therefore extends care to beyond the patients’ and includes patients’ families, health care providers and their families, and particularly the vulnerable sections of the society who have suffered either an economic, relationship or lifestyle loss due to the pandemic.
While we continue to compassionately care for those who are sick and suffering, these human interactions often lead to questioning the “meaning” which transcends medical science and touches the very heart of our existence. All of these situations have made me ponder if after sailing through the second wave of the pandemic at least, if we are now adequately prepared? or Will we continue to hear stories of patients dying alone and families being devastated with the news? or How can we ensure that patients’ die in dignity while their family achieves closure?
It is re-assuring and heart-warming for me to learn from scientific evidence that healthcare staff caring for end-of-life COVID patients, have identified the need for creative solutions to bridge physical distances between patients and their families to facilitate some connection with each other without risking anyone’s health to that they can continue to receive compassionate care (Wakam et al 2020).
So yes, No one deserves to die alone!