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The right to live in peace … and to die in peace as well

Published online by Cambridge University Press:  30 March 2020

Verónica Rojas*
Affiliation:
Departamento de Medicina Interna Norte, Unidad de Pacientes Críticos, Hospital Clínico Universidad de Chile, Santiago, Chile International Research Project for Humanisation of Intensive Care Units, Proyecto HU-CI, Madrid, Spain Centro de Investigación Clínica Avanzada (CICA), Hospital Clínico Universidad de Chile, Santiago, Chile
Alejandra Palma
Affiliation:
Departamento de Medicina Interna Norte, Unidad de Cuidados Continuos y Paliativos, Hospital Clínico Universidad de Chile, Santiago, Chile Grupo de Trabajo Transversal “Fin de Vida y Muerte”, Facultad de Medicina, Universidad de Chile, Santiago, Chile
*
Author for correspondence: Verónica Rojas, Santos Dumont 999, Independencia, Santiago, Chile. E-mail: verorojas@uchile.cl
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Abstract

Type
Essay/Personal Reflection
Copyright
Copyright © Cambridge University Press 2020

The normality of his routine and his family Sunday lunches were interrupted by news that no one wanted to hear. He was 70 years old, and the diagnosis of end-stage metastatic cancer was the words that broke the heart of everyone, and with that, the hope of a future. From that day on, and during the first week, chaos took over. It seemed reasonable to omit the diagnosis and act as if nothing had happened with the objective of “protecting” the one who was the husband, father, and grandfather of a family that stood out for its unity. This is how “the conspiracy of silence” was installed as a reality in the home.

“They will know the truth and the truth will set them free”  …  was one of the few certainties in the head and heart of his youngest son, perhaps the only certainty in this scenario of uncertainty and suffering. The conviction that his father had the right to know the truth, led him to insist on having what would be the most difficult and liberating of conversations with his family. After all, it was better to cry together than in silence and alone. Although the days seemed long, time passed quickly … or perhaps, in retrospect, the time was fair; the right time to say I love you, to sort out priorities, to do together what they loved the most, to create memories, to retell stories of the past, to say goodbye, to let go and be released. The end-of-life process can be traveled in the company of others that was one of the first lessons for the family and for those who had the honor of being part of this journey; most of the time without knowing what to say, just being there.

A professional team joined this network of love and support, a team that above all, was a team of people. People dedicated to palliative care, looking them straight to the eye, in the privacy of their home, pledged to alleviate their family member's suffering through total care. That promise and its fulfillment were progressively lived in the peace of his bedroom, lying in his bed and surrounded by the ones he loved, until the dawn of a February day.

As healthcare team, as family members, and as friends, we have witnessed different deaths, each one of them, as personal as unique, but all with a common factor: Dignity.

In the midst of the social outbreak in Chile, the phrase “until dignity becomes a habit” has been one of the most commonly used slogans. This phrase is the expression of social inequality experienced, inequality that is evident even in the way and the place where one dies.

Death does not distinguish between people or social status; however, there are privileges even in it. An example of this is the access to palliative care in our country today reserved exclusively for pain relief in cancer patients.

There are people who were never able to express the place where they preferred to die, others continue to receive diagnoses with euphemisms or lack of compassion, many have no option to be accompanied by people who are meaningful to them, some continue to die with pain or difficulty breathing and others impoverished in the process.

The past few weeks, people have sung in one voice “The right to live without fear in our country, in conscience and in unity with all humanity … with respect and freedom, a new social agreement, dignity and education, so that there is no inequality.”

The right to live in peace must incorporate the right to live a dignified life until the end, so that the story told is not only the story of one, but of everyone.

Acknowledgments

The authors thank the Unidad de Cuidados Paliativos del Hospital Gustavo Fricke and specially thank to Rodrigo Gutierrez, Ana Maria Rojas, Daniela Ponce, and May Garces for checking the manuscript.