By Nahla Gafer
IAHPC Board Member
In addition to underlining the necessity of providing public health care, the COVID-19 epidemic has highlighted the need for collaboration and the importance of coordination between patient care providers, and has brought us closer to the concept of our own mortality. We, as humans, are mortal. We die. We are vulnerable. COVID-19 made that reality felt by the majority of people on Earth.
Kevin Toolis, author of the beautiful book My Father’s Wake: How the Irish Teach Us to Live, Love, and Die, says, “If we can recognize each other as in some way equal at the grave, perhaps we can then, too, in other places, also see each other as the same creatures who have wants and needs and desires like our own. And so have more understanding of both our and their own frailties, and no longer divide ourselves into defining categories like rich or poor, city or islander, strong or weak, clever or stupid, but just human. All too human. Like us.”1
The COVID-19 pandemic, with all its disadvantages, has give a higher profile to the importance of public health and that of essential workers, especially health care personnel. In some countries, health care personnel (in contrast to other immigrants) were not allowed to travel back to their countries or take unpaid holidays.
These are ways COVID-19 has changed the way we die:
Increased incidence of death — in those contracting it — especially in the immune-compromised, the elderly, those with chronic health conditions, and the obese. The virus has discriminated against the underprivileged, and the poor got poorer.
Increased deaths due to compromised health systems. This was felt particularly in less developed countries. Sometimes, complete closure of health facilities occurred. People did not know where to go if they suffered an asthma attack, experienced complications due to diabetes, or had heart problems.
Increased deaths due to emotional state. This is something that is felt but has yet to be investigated. Do we have increased mortality due to the isolation, and negative psychological effects such as uncertainty, increased financial problems, and the loss of loved ones?
A changed reality of death: isolation, stigma, and missed opportunities for mourning. With COVID-19, or the suspicion of it, gatherings have not been permitted. In some countries, people are used to having long mourning periods, where the house is open for visitors for not less than a week. All that has been curtailed. Funerals are held quietly, and privately. The bereaved have no visits before the death, and no visits after. Many patients died without having their beloved ones at their side. The disease became so stigmatized that some relatives deny it in order to have normal funerals, unfortunately leading to others contracting the illness.
Increase in deaths due to financial struggles. The shutdown in many countries affected people's livelihoods. I had not felt this so strongly until a part-time worker from Khartoum excused himself from work because he had lost a four-month-old twin the day before, and had to stay in hospital to care for the other. Both babies were suffering from severe malnutrition. It is difficult to feed a family of five with no income.
The way we died before COVID-19 was not ideal. This past century, we drifted from dealing with death as a normal part of our culture, to it being secluded in hospital rooms. We became a death-denying community, fighting for more medical interventions to extend life even if death were inevitable. This of this has lead to a poorer quality of death, and more suffering for those left behind.
During the time of COVID-19, “[T]he poor die in agony in neglect, the middle class die in agony in ignorance and the rich die in agony on a ventilator. No one gets a dignified and pain-free death,” says Dr. Sankha Mitra, writing about personal communication on end-of-life care in India.1
We as health professionals, we as palliative care personnel, should be concerned about good life, good death, and good grief.2
1. Toolis K. My Father’s Wake: How the Irish Teach Us to Live, Love, and Die. De Capo Press, 2018.
2. The Value of Death. More death (and life) quotes collected by the Lancet Commission on the Value of Death. August 9, 2020. Accessed online on September 2, 2020
Editor’s note: Please join us in congratulating Dr. Gafer on her new appointment by the Sudan Medical Specialization Board to supervise the training of 60+ oncology registrars, which includes a compulsory palliative care shift.