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Carlos Centeno Cortes, researcher del Institute for Culture and Society
Carla Reigada, Researcher at Institute for Culture and Society
Speaking out on palliative care: the message matters
In her hospital room, where she has been for days for cancer treatment, Maria is anxious. In addition to other symptoms, she has difficulty breathing. The financial aid comes soon through the Palliative Care team. "We work together with her oncologists to alleviate, review treatments and indicate medication that can make her illness more bearable from all points of view," one of the doctors explains to her.
Maria is not familiar with this service. At first she is frightened because, from what little she has heard about palliative care, in her head it is associated with a fatal diagnosis or an imminent death. But the team at visit gives him confidence and he decides to put himself in their hands. After a week, she sees that, despite the poor prognosis of her cancer, her symptoms are improving and she is more cheerful and in better condition to go on with her day-to-day life. "They are just what I needed," she says gratefully to the team before leaving the hospital.
Like Maria, many patients experience the financial aid of palliative care: a medical specialization program that focuses on improving quality of life, reduces anxiety and depression and, in some cases, even extends life span, as attested to by various studies research. Thus, they have understood, first hand, that the message of palliative care is far from being black: it is hope for relief, it is colorful notes in the disease, because it puts the focus on life. It is the promise that, even when it can no longer offer a cure to a patient, there is still much that can be done. Professionals will work hard so that he and his family can live with as little suffering as possible the time they have left together, be it months or years.
Palliative care seeks to solve problems by providing individualized care for each patient and treating symptoms that are sometimes complex and difficult to control, such as pain or anxiety. This is possible because the team works together with other professionals such as oncologists, cardiologists, neurologists and family physicians, which makes it possible to complement therapies and ensure continuity of care. For all these reasons, it is recognized as a highly humane, close and positive service to the patient.
It is no coincidence that the main international organizations highlight palliative care as a fundamental service in the health systems of countries. Thus, in 2014, the member states of the World Health Organization (WHO) committed to the development of palliative care within the priority goal of universal health coverage. Along these lines, WHO is supporting countries with different types of tools; in the last five years, several guidelines (available on its website) have been published to implement them, particularly in primary care and status health crises, as well as in pediatrics.
So, if things are so clear, why does the public discussion so often focus on suffering at the end of life and not on demanding the universalization of care for advanced illnesses? Why is the public not familiar with the message of hope that palliative care implies?
At the University of Navarra we have worked with international experts from around the world, convened by the Vatican Academy of Life. This group tried to give an answer to how to promote palliative care at the level of a country or in any region of the world. The findings were collected in the White Book for Global Palliative Care Advocacy, which was presented at the congress World Palliative Care, held in Berlin in May 2018.
According to the publication, it is the responsibility of policy makers - mainly ministers of health and governments - to align themselves with WHO recommendations. Secondly, universities should train all future doctors and nurses in this discipline . And thirdly, health professionals must be agents for the promotion of palliative care: they must make an effort to communicate a clear and direct message so that its nature, its purpose and the values at stake are understood. This implies using appropriate words; humanizing the speech through patient stories; intervening in academic, social and journalistic forums in a friendly and positive tone....
The promotion of a clear message about palliative care is more effective if social mobilization actions in favor of care until the end are developed. More and more social actors can be reached through campaigns.
One example is the "city of care" or "compassionate communities" movement: cities, towns and municipalities that are involved at all levels -from public administrations to companies, citizens or the media- to care for and accompany people with advanced disease. Seville, Santurce and Vitoria have already joined this initiative proposal. Pamplona is also beginning to organize itself as a city that cares.
World Palliative Care Day is celebrated this year on Saturday, October 12 with the slogan 'My Care, My Right'. This day seeks to give voice to a positive and true message: "A human right that patients and caregivers should demand for themselves and their families within universal health coverage". Receiving the best comprehensive care at the end of life is not a privilege, it is a right for everyone.