Accompany dying: palliative care and COVID-19

For the philosopher and historian Michel de Certeau, dying is what innominable: an experience that lacks meaning and words to express that there, with death, an unavoidable distance and infinite pain opens. And as indicated in an interview by the doctor Uriel Pérez, director of the Mexican Foundation of Palliative Medicine in Guadalajara, Mexico is no exception, where “it is still a taboo topic to talk about death”, where “for many people it is difficult to raise the good To die”.*

There is no doubt that this situation has been exacerbated by the current Covid-19 pandemic. The deadly games caused by this virus were configured as an experience in solitude and isolation with high emotional and sociocultural suffering difficult to be nominated, understood and cared for. Thus, in times of coronavirus, while the closeness at the end of the life of a loved one was complicated, the funeral rites that once allowed us to hurt each other collectively and keep each other company were also suspended.

However, among so many complexities, during the current health crisis we have also witnessed different actions and strategies that people in the process of dying from Covid-19, their families and health professionals, among other agents, have been implemented to shorten these distances and to accompany these sufferings. To invent ways to take care of each other despite the estrangement.

Therefore, it is important to recognize, recover and reflect on the concrete experiences that were and are still unfolding to sustain the end of life in a pandemic in solidarity, companionship and creativity.

In this sense, palliative care in general and the Mexican Foundation of Palliative Medicine (FMMP) in particular can illustrate an example of how to accompany those who are about to leave. Inaugurated since 1992 in Guadalajara by pioneering doctors of palliative medicine in Mexico, the FMMP has been dedicated to the comprehensive, efficient and dignified care of people with advanced and terminal chronic-degenerative diseases. With which this institution of civil society, as indicated on its website, has sought to strengthen in our country “the right to live without physical or emotional pain.”

Since then, and still in a pandemic, as Uriel Pérez explains, palliative care has been defined and practiced as a “human approach to the vulnerable state of people suffering from a life-threatening disease (…) attending to all spheres of the person ”. In this way, with palliative care, care serves as a professional, social and human strategy to alleviate the loneliness and pain of the dying process. A strategy where care is taken and received as a way of building a place of company and social solidarity that allows us to face the last stage of life with dignity and well-being. In this sense, as the director of the Foundation reiterates, it is not difficult to assume that “palliative care became very relevant in this time of the pandemic because it was a way to keep in touch and not to lose that thread with people.”

The continuation of this care during the current health crisis, provided by the FMMP and other groups and palliative care institutions, has also helped to make visible and recognize that solitary and painful dying should be considered as a problem of general interest. A social problem that has been aggravated by the explosion of the coronavirus but that already existed previously in an important way in the framework of other diseases and life situations. And a problem that, as Uriel Pérez points out, during the current pandemic, in addition to people with Covid-19, has also affected “many other people with various conditions, who faced these scenarios of loneliness and pain”, with deaths complicated and “terrible griefs for families.”

In this sense, the work of the Foundation suggests that the current crisis should act as a catalyst capable of promoting a public discussion about the necessary care and the rights that guarantee it to go through and sustain the end of our lives with dignity. Thus, as to assess and discuss other deaths not caused biologically by the coronavirus, but by the social, economic, political and global consequences of the pandemic.

Likewise, knowing the work of the FMMP helps to assess how civil society has also been one of the key agents to manage, go through and solve the crisis in which we find ourselves. For example, there is no doubt that the hospital reconversion was necessary to provide timely care to patients with coronavirus, but it also incurred the cost of relegating medical care for other conditions. Faced with this situation, the Foundation serves different people at the household level. A work that was of great importance, as Uriel Pérez narrates, “due to the support that can be done to patients and this solvency that as an institution we can also offer families to reduce the economic burden” of the disease.

In this sense, the work and commitment of the Mexican Foundation of Palliative Medicine shows that palliative care is a commitment to name, sustain and go through dying in a dignified and humanitarian way by “getting involved in the care of our sick people”, such as points out its director. A care that must be understood as a public responsibility and a human right that, as individuals, society and the State, could help us to repair the multidimensional ravages of the current pandemic. In particular, of those painful games that many experienced and still took care of in solidarity in the distance.

* Interview conducted by the author with Uriel Pérez in June 2021.

Angélica Dávila Landa is a teacher in Political Sociology from the Mora Institute and a degree in Latin American Studies from UNAM. She is currently co-coordinator of the Political Sociology of Care Research Seminar at the Mora Institute.

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