"Palliative care should be a right, not a privilege."Lessons from the Covid-19 pandemic for palliative care.Really, are palliatives a major cost to the system?The social panorama that lies ahead is complicated, and "very scary," says Silvia Librada. According to the latest World Health Organization (WHO) report on 'Aging and Health', by 2050, almost 22 % of the world's population will be 60 or older, and people over 80 will triple to almost 450 million.
In Spain, the data point in the same direction. Our country had 18.7 million households in 2020, and an average of 2.5 people per household, according to the National Institute of Statistics (INE). 32 % of people over 65 years of age and 47.4 % of those over 80 years of age have some form of disability. The most frequent is difficulty in moving around outside the home, followed by disability in performing household chores.
The dependency rate - the ratio between the dependent population, under 16 years of age or over 64 years of age, and the working-age population, from 16 to 64 years of age - stood at 54.4 % in 2020, and forecasts point to a progressive increase: 60 % within a decade and 83.7 % by 2050, according to the National Statistics Institute (INE).
"The message is that society is aging, with more and more chronic disease, our life expectancy is getting much longer, life expectancy is going to increase to 86 years in men, and 90 years in women." In addition, "we will live longer, with more chronic disease, which will lead to higher rates of disability and dependency. And this is what causes a greater burden of care," says Silvia Librada, born in Mérida, who has been living in Seville for 12 years. This Extremaduran woman is director of the 'Todos Contigo' program in the New Health Foundationas part of its project 'Sevilla Contigo. Compassionate City' project.
All with you' is a audiovisual series aimed primarily at non-professional caregivers and family members in charge of people with chronic or advanced disease, explains the biologist director. These are eight short training videos on 'Care in Advanced Illness' promoted by this non-profit organization, in collaboration with the La Caixa Foundation, Cajasol Foundation and the Andalusian Regional Government, as part of the training areas aimed at caregivers and family members.
We talked with Silvia Librada, master in management tools and health research, which relates to her work on compassionate communities at the end of life, which she has developed in her doctoral thesis. This woman has been with the New Health Foundation since it was founded in 2013, and has been working in palliative care for 18 years.
About to become a doctor.
- In two weeks. I submit the thesis on March 4. It is already deposited. The only thing left is the defense before the examining board. Soon I will be a doctor in Health Sciences. It was one of the objectives and one of the dreams I had to fulfill at the academic level.
The data provided above are frightening.
- In addition to the fact that, besides needing more care, we are a society that is increasingly lonely. Loneliness is present. Almost 5 million people live alone in Spain. Loneliness, chronic, complex, increasingly advanced disease, means that there are more people who require such care. Everything converges in the fact that we are going to need care, and in many cases we have no one to provide it.
New Health Foundation vindicates the role of non-professional caregivers, who number in the millions in Spain.
- The central motif of these eight recordings, didactic videos, is 'How to care and how to care for oneself'. The idea arises in response to the need to offer basic training material that can be easily understood and implemented by caregivers at home, in the usual spaces of every home where there is a person with dependency.
In addition, it aims to be a useful tool to improve the quality of life of people affected by advanced disease and their non-professional caregivers, through training.
It is online training, and free of charge.
- Yes. The didactic material has been designed to continue with the distance training of caregivers within the program 'Sevilla Contigo. Compassionate City' program, adapting to the situation we are living in due to the pandemic and the resulting distancing measures. These circumstances do not advise the realization of face-to-face workshops for caregivers in order to avoid possible contagions.
They have published a booklet with tips and exercises for taking care of yourself while you take care of yourself. Care takes a lot of wear and tear.
- It is a compilation of recommendations and 'Self-care' exercises for caregivers and relatives of people who are in a situation of advanced illness and at the end of life. The objective is to create a physical and material space for caregivers to reflect, where they can express their feelings, draw, organize their care, and "take care of themselves with the 5 senses".
The idea for this Notebook for Caregivers came to me during the pandemic. I was writing at home as a life book for two years. I was scared, as we all were, and it was very useful for me, to make a notebook of gratitude, to tell what was happening on an emotional level, etc. In the end it was self-care... I was alone, I lived alone, and caregivers can reflect on their vital moment, during the act of caring. We have all cared at some point in our lives, we are going to be cared for... To see what we are and how we can help others.
How many people can benefit from your actions?
- Currently, the 'Todos Contigo' program is being developed to meet community objectives in the San Pablo-Santa Justa district and in the Macarena district of Seville, and reaches around 100,000 Sevillians who can benefit from this method whose progress has managed, over this period of time, to improve the quality of life of both the people facing illnesses and their families.
There will be people who need palliative care.
- We have two lines. One whereby we want to raise awareness not only among the population of Seville, but among the entire population, about the importance of caring and accompanying, so that they learn and become empowered in the act of caring. Then, in a direct way, we work with palliative care teams, with health professionals, city council professionals, directly in the care of people who are just in a process of end of life.
You started working in palliative care 18 years ago, practically your entire working life.
- I started working in palliative care, in research, at the age of 23, where I was able to enter, and there I got to know this profession, the professionals who were dedicated to it. And it was love at first sight. In love with the profession and what all the professionals do, my place has always been to help in innovation, research and development in palliative care. That is my job.
In the end, the idea is part of a project to create communities involved in care, and to create a society involved in the values of care. A message that involves citizens in the first place, and all organizations, public, private, that begin to connect and try to help with all the services that make all these needs.
We always try to promote a network of agents, institutions, organizations, professionals, citizens, volunteers..., volunteering is very important. So that everyone is involved in these values of caring, so that we wake up once and for all to this situation. We keep talking about the epidemic of loneliness that we have before us, society is getting older, more and more, but it seems that we have not woken up to the situation that we have before us, which is very scary.
What more could be done to care for people who are not currently receiving palliative care?
- Every 10 minutes a person suffers a death in Spain. The latest data from the Secpalwhich we helped to develop, highlighted the fact that in Spain we need to double the resources available for palliative care in order to reach the population.
And it is not so much a question of duplicating resources, but of trying to identify where these people are, because palliative care is still not available today. And I believe that this is due to a lack of identification, and because it is also necessary for the rest of the professionals, in primary care, in specialized care, or in any other organization, to see that they have a person in front of them who should require palliative care. Because we are still late, we are still arriving in the last days, training is very important because we need to talk about all this at universities...
I am doing a compassionate university project, which tries to include the themes of care, compassion, community, in the university. I do interviews, I do surveys with medical, nursing and psychology students. And I would tell you that in 30 percent, there are 7 out of 10 students who do not talk about death, in a faculty of Nursing, Medicine and Psychology.
The reality of death is almost absent in the university.
- And if the university does not address death, it means that we are turning our backs on a reality that occupies one hundred percent of the world's population, it is the most important prevalence we have, one hundred percent of us are going to die. And you still haven't solved that.
The training, the creation of specific resources in palliative care, all of that has to be built. I have been working in this field for 18 years, and I remember a big push in palliative care 18 years ago, maybe 20 years ago. Palliative care has been in Spain for 40 years. Eighteen years ago I saw a lot of resources available, but they have remained stagnant, those that exist are what they were 20 years ago, and I say: they have not created more..., and some have been eliminated.
It is not difficult to guess that he would agree that there should be a law to promote palliative care in Spain.
- In all this time I have known many bills, and they do not come out. Let's see. It is the right of every citizen to be treated well until the end of life. If we have that right, we should be given that benefit from a service. And if it is a public service in Spain, then it should be a public service. And we are not guaranteed this benefit for palliative care.
There are national palliative care strategies that have been put in place. There are some resources, but I do not know if it is guaranteed in rural areas, in other areas, in which they are providing you with a service just like a trauma service, cardiology, etc. Some time ago these strategies and action plans were there, but they have come to a standstill.
Compassionate cities
Will there be more compassionate cities in Spain? New Health focuses on Seville?
- The development of compassionate cities began to have an important impulse six years ago, when we started the project in Seville, which is like our demonstration project. But from the Foundation we have a process, a method, by which we help organizations to also create compassionate communities.
In Spain there are cities like Badajoz contigo, which is now promoting the Cuidándonos association. Rafael Mota, who is a doctor from Badajoz [former president of Secpal], is also promoting it, and they are called like us, Badajoz with you, we have Pamplona with you, with the order of San Juan de Dios, Bidasoa with you, the Basque Country also works with us, in Galicia also...
There are several cities in Spain that are beginning to work in the methods we use, but then other initiatives have emerged online, such as the development of communities and cities that care: there are in Vitoria, in Vic ..., are other cities that are in the same line of creating communities that care.
Its website states that there are 'compassionate cities' in Colombia...
- An important movement has begun to emerge to raise awareness in society. We also have cities in Colombia, in six cities that are working with us, such as Bogotá, Santa Marta, Ibagué, Villavicencio, Manizales, Cartagena, where I have been a few times. It is a very nice thing. It is an expansion that hopefully will be extended, and will involve the entities that promote them, and a whole network of agents.
This is leading to more and more knowledge about palliative care, which I think is the most important thing. If I have a good knowledge of palliative care, society will be very strong in saying: hey, sir, why don't you refer me to a palliative care program.
May it be the person himself who says: oh, oh, the treatments are not working, could it be that I am going to die? That we ourselves can say: please, can you provide me with a team to relieve my pain, to alleviate my emotional suffering, and to help my family through this transition? And if we say that in a simple and clear way, talking about death without any taboo, I believe that society will come to push more and more the way to approach this. Then there is another society that turns its back on death, that tries to almost hide it.
To hide it, or to provoke it...
- I would like to emphasize the value of palliative care, which I am passionate about. We were recently invited by the World Health Organization (WHO) to talk about the 'Sevilla Contigo' project, as an example of an innovation project, with Dr. Tedros Adhanom Ghebreyesus, Director General of the WHO. One of the political leaders of the World Association for Palliative Care came to the Foundation. I told her: my politics, my religion and my love are palliative care. She laughed. I believe in palliative care, it is like a creed, and it includes everything.
We conclude the conversation with Silvia Librada. I would like to add that there are 'compassionate cities' not only in Colombia, but also in Argentina and Chile. And that the trustees include a prestigious palliativist, Dr. Álvaro Gándara del Castillo, coordinator of the Palliative Care Unit at the Fundación Jiménez Díaz University Hospital (Madrid), and former president of Secpal.
