Valeria, we understand that palliative care is the care of very vulnerable people at the end of their life.
In 2022 we celebrate the regulation of Law 27678 on palliative care (CP), which defines them as “a model of care that improves the quality of life of patients and families facing problems associated with life-threatening or life-limiting illnesses, through the prevention and relief of suffering through early identification, evaluation and treatment of pain and other physical, psychological, social and spiritual problems.”. The law shows us the multidimensional nature of care and that it is not only at the end of life. We work with people, with life and also with the possibility of its end.
I consider what to think Care only at the end of life is a reductionism that could, among other consequences, limit the fundamental early arrival to care services. Then there are cases in which the symptoms subside, where we would not therefore speak of end of life.
It is important that the community in general knows about palliative care since, according to the World Health Organization, of the 40 million people who require palliative care worldwide, 78% are from low and middle-income countries and that at the global level Globally only 14% receive palliative care.
Another reductionism is the nomination of a terminal patient or critical patient. We are all terminal from the first second of our lives and thinking about palliative care as a critical area could cause treatments to be limited to only some of the patients with complex chronic conditions and their possible biological perspective. Care goes far beyond organic.
How do you practice palliative care?
Palliativists talk about care as an attitude and we advocate for the co-responsibility that this entails. We are interrelated subjects and the category of care is taking into account a contextualized subject, who has decision over his or her own body, emotions, desires and life project. Decisions about care should be made relationally: the patient, their family, environment and treating professionals. The patient is an active protagonist in this decision-making, even in childhood.
By taking this relational subject into account, we work interdisciplinaryly, attending to all palliative needs. The teams are made up of doctors, psychologists, music therapists, occupational therapists, social workers, among others.
When an illness limits or threatens a life, it is pertinent to attend to all aspects: physical, social, psychological, emotional, spiritual. The organ does not get sick, the entire individual gets sick.
Are you about to present another book?
Yes, compiled together with my colleague Gabriel Alejandro Solarz Di Cola and leading authors in CP we wrote “A MATTER OF LIFE. Listening and the interdisciplinary perspective in palliative care, beyond biological hegemony.
In the reasons for compilation we say: Those of us who write these letters believe that the act of caring goes beyond the attention focused on the cure of diseased organs. The theorizations and experiences that we relate in this work reveal a way of welcoming those who suffer, transcending the asymmetries and rigidities that characterize a healthcare system that is mostly deaffected in the name of science. As palliative practitioners, we share the firm conviction that those who live with a condition that threatens or limits their lives, because they experience the condition in contexts of fragility and vulnerability, are the possessors of the truth about their bodies, emotions and desires. We remain fully listening to its various forms of expression, to the pain, the fear and the stalking of the disease, with a look and intervention that sustains and accompanies what is essentially human…
We form and coordinate PC teams, with the firm and primordial conviction that what our patients go through “is a matter of life”… we care for lives and when the end is inevitable we accompany the person and their environment in this journey.
Interdisciplinary in CP is to dialogue, resolve, allow oneself to be questioned, recognize the lack and go towards the shore of another knowledge and return to what is foundational: the recognition that a life is not simply the matter that sustains it.
When and where is the presentation? How can potential patient readers find you?
The presentation is on Wednesday, October 25, at 7:00 p.m., at the Museum of Books and Language, Mariano Moreno National Library, Avda. Gral. Las Heras 2555, in the Autonomous City of Buenos Aires.
You can find me at www.valeriacasal.com or on IG: @casalpassion
Thank you so much.
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