Financed by the Amancio Ortega Foundation, with 30 million euros, it will be managed by the Porque Viven Foundation, created by Dr. Ricardo Martino, a pioneer and benchmark in this discipline, and will be a reality in mid-2025.
The San Blas district, in Madrid, will host the first Comprehensive Pediatric Palliative Care Center (CAPPI) that will attend to children from the community and those who need it from all the autonomous communities. Financed by the Amancio Ortega Foundation, with a budget of €30 million, will be managed by the Porque Viven Foundation, created by Dr. Ricardo Martino, a pioneer and benchmark in our country in this discipline and head of the Pediatric Palliative Care Unit of the Niño Jesús University Children’s Hospital. The project, created after nine months of conversation between both entities, has been presented this Tuesday in Madrid.
Before, just starting the day, it has been administratively presented to the Madrid City Council, which has ceded municipally owned land for its construction: it will have a surface area of 15,000 m2. All the political groups have supported the initiative, explained what will be the director of CAPPI, Mónica Cantón de Celis, who stressed the need to have this type of resources for the end-of-life care for minors and, of course, their familieswho live their first duel when they are told of the fatal outcome of the disease.
More than 80,000 Spaniards die each year without receiving the care they need at the end of their lives and in the case of pediatric units, implementation is uneven and scarce
More of 80,000 Spaniards die every year without being able to receive the care they need at the end of their lives. The palliative care teams that provide the socio-sanitary care received by people diagnosed with chronic, advanced and terminal diseases. A culture that goes beyond care. Is about humanize care. Let each one choose how and where to spend those final days. In his house, in a hospital, in a specialized center…
huge inequalities
The inequalities in access to this type of care are still enormous. Not only between communities, even in the same province or in the same city. Especially bleeding is the lack of pediatric units. In Spain, explained Mónica Cantón de Celis, there are only three public hospitals with 24-hour palliative pediatric care: the Child Jesus, in Madrid; the Sant Joan de Déu in Barcelona and the Virgen de la Arrixaca, in Murcia.
It is difficult for society to accept this. There is no word that designates the loss of a son or a brother”, says Dr. Martino
The reason for these deficiencies was explained by Dr. Ricardo Martino. Nobody thinks that children die. There is not even a word in the dictionary to define that loss. “Society has a hard time assuming this. There is no word that designates the loss of a son or a brother,” said the palliative. In addition, he said that palliative care in adults has nothing to do with that of a child. “Sometimes we start caring for families during pregnancies, with perinatal care,” he clarified. Children cannot make decisions either, he added, so the philosophy in this final care has other very peculiar conditioning factors.
The installation that has been presented in Madrid, the only one of its kind in our country, will make it possible to offer a Comprehensive and personalized care for children and adolescents affected by complex and chronic diseases that seriously threaten their lives. It will also serve as support their families -in the full extent, not only to the main caregivers- who will also be given all the attention they need to get through such a hard time.
income per respite
The experience of the Porque Viven Foundation in caring for minors and their families has served as the basis for designing the future project, José Arnau, vice president of the Amancio Ortega Foundation, pointed out in the presentation. The idea is that it be a reality by mid 2025. In the facilities there will be a day center (24 beds); 30 rooms for admissions for respite, continuity of care, medium and long stay; integration classroom (12 places)…
The center will have a pharmacy, therapy rooms for inpatients and outpatients (physiotherapy, occupational therapy, pool hydrotherapy…), psychological care for patients and families…
Besides, there will be four family apartments for the farewell, intended for those children in the last stage of the disease; complementary and necessary services for the well-being of minors and their families: pharmacy, therapy rooms for inpatients and outpatients (physiotherapy, occupational therapy, pool hydrotherapy…), psychological care for patients and their families, recreational and rest spaces (library , games room, music room) or a multi-denominational space with 5,000 m2 of gardens and outdoor spaces.
Patients from all over Spain
Besides, will function as a training center of high-performance pediatric palliative care teams, with the implementation of a training program, with temporary residences in the same center. Likewise, in collaboration with the Gregorio Marañón Hospital, a pharmacological research program will be developed because, explained Dr. Martino, there is a lack of medicines intended for children in this field.
The patients who will arrive at the CAPPI will come from the health care services of the public health system. In addition to minors from Madrid, the center It will also attend patients from other autonomous communities, given its unique character in Spain. The idea, however, is to train palliativists so that resources such as the one presented today can be extended to other parts of the country.
The Porque Viven Foundation was created in 2009 by Dr. Ricardo Martino, a pioneer and benchmark in the discipline. He is the head of the Pediatric Palliative Care Unit of the Niño Jesús Hospital. Since its launch, and in close collaboration with public health, they care for children and adolescents in their own homes and in hospital facilities in the region.
In Madrid there are around 3,640 palliative care patients under the age of 20
With data from the foundation that directs and launched the largest reference in our country in pediatric palliative care, in the Community of Madrid, there is an approximate figure of 1,300,000 people under 20 years of age. According to the diagnostic codes of the World Health Organization (WHO), an estimated prevalence of 28 hospice patients for every 10,000 children under 20 years of age. Crossing both references, the population registry and the WHO statistics, in this autonomous community there are around 3,640 palliative care patients in that age group.
The Spanish Society of Pediatric Palliative Care (PedPal) also confirms these data, estimating that there are 25,000 patients eligible for palliative care throughout Spain, of which slightly more than 15% would be in Madrid, that is, around 4,000. Of all these patients, 85% do not receive palliative care because services, nationally, are scarce.
In 2021, a total of 1,873 deaths of patients under 20 years of age were registered, of which 259 were in the Community of Madrid
On the other hand, in the year 2021 a total of 1,873 deaths of patients under 20 years of age, of which 259 were in the Community of Madrid; According to medical sources, 60% of these deaths are preventable. In the absence of official data, the data collected by the Porque Viven Foundation allow an approximation of the boys and girls with palliative needs who are cared for by the Foundation and their families.
The following data corresponds to “the fixed photo” as of April 23, 2023 in the Community of Madrid: in the last five years the Porque Viven Foundation has served a total of 1,483 people. It has accompanied 498 children and 985 family members with 17,022 direct interventions from the psychosocial care team, offering individual, family and support group care.
The entity led by Dr. Martino has cared for 378 bereaved relatives, carrying out 2,162 direct interventions by the psychosocial care team
In addition, the entity led by Dr. Martino has cared for 378 bereaved relatives, carrying out 2,162 direct interventions by the psychosocial care team to offer individual, family and support group care. On the other hand, in these five years the families have received financial and technical aid such as wheelchairs, beds or cranes, physiotherapy, music therapy or respite services at home.
The Amancio Ortega Foundation, created in 2001, develops projects in the fields of health and education, with special attention to the most vulnerable groups in society. Examples of this line of action are the construction project for Comprehensive Care Centers for the Elderly and the program for the implementation of proton therapy in public health.