Over 25,000 children in Spain are diagnosed with incurable terminal diseases and over 3,000 die every year, yet there has been no specifically designed palliative care protocol for them. Ricardo is leading a paradigm shift focusing on both health professionals and on patients, their families, so that these children can enjoy the best quality of life possible which is child-centered, home based, and health professional supported.
The New Idea
Ricardo has designed and implemented the first pediatric palliative care system in Spain for children. Two of the key insights of his model are that, first, the focus is on the child´s living and not on their eventual death and, secondly, staying at home instead of being hospitalized can make a vital difference to their quality of life. Staying at home ensures that the family stays together, makes it easier for parents to care for their child and doesn´t separate the child from her secure environment, all of which improves the conditions under which the children live through this extremely painful (emotional and physical) reality. Moreover, avoiding unnecessary hospitalization minimizes the financial and logistical problems that many families face.
Ricardo has been the driving force behind the first public national system of home-based pediatric palliative care in Spain for all children with incurable diseases, revolutionizing the approach to ensure that no matter their economic situation, the illness they suffer or how far away they are from a hospital, children have access to quality and dignified care. His model demonstrates: that economic savings can be made by implementing home-based care; that palliative care specialists acting as patient-champions substantially improve the quality of life for children, that pediatricians feel more confident and supported when having to communicate and implement the diagnosis; that the child´s decision always prevails over the family´s or even the doctors who recommend that they remain hospitalized until their death; and that the grieving process for families begins earlier resulting in increased acceptance of the situation.
To promote an end-of-life culture for children, Ricardo began with an integrated (physical, psychological, social and spiritual) palliative care service in one of the biggest public hospitals in Madrid for all children with terminal diseases. He has since helped to create palliative care teams in 15 hospitals in different regions of Spain to implement his home-based pediatric palliative care model, he has created an online master of pediatric palliative care for doctors and nurses and has created a scientific network, the Spanish Society of Pediatric Palliative Care in order to publish and share knowledge of the sector.
Ricardo is now starting to build an educational and outreach strategy, to be followed by an international scaling strategy. He creates awareness of the problem, educates new professionals in the field and builds a pediatric network (universities, public administration, private sector and families) to share knowledge. Southern Europe and Latin America are the areas most interested in adopting his child-centered, home based, and health professional supported pediatric palliative care approach.
The diagnosis of certain death of a child is a traumatic process. So traumatic that in most languages there is no word for the loss of a child – there is widow and widower, there is orphan but no word for a parent that has been left bereft. This taboo or non-acceptance extends to the medical profession, where pediatricians are unable to communicate the realities to the patient and his or her family. This can lead to children dying without their family around them, or in extreme cases death taking families by surprise.
The death of a child is seen as a tragedy for the family but doctors are also affected. Doctors, especially pediatricians, have a vocation to cure, and the death of a child is considered an inherent failure of their responsibility. It is vital for them to receive specialized training covering psychological, spiritual and ethical input. It is estimated that without training and support, only 20% of doctors are capable of clearly communicating a certain death to children and their families.
There was no uniform practice for palliative pediatric care in the Spanish health system. That means no process but also means a lack of professionals trained in managing life for dying children.
Palliative care is normally associated with cancer and with the last months of life, but around 70% of children die from brain-related diseases. These illnesses, which are generally degenerative, mean a long complex process with numerous hospital visits, stays and treatments which can disrupt family life for years. Around 3,000 children die each year in Spain, but around 25,000 have incurable diseases. The inexistence of a child- centered palliative protocol means that in the cases of long-term incurable diseases, there is no long-term plan for these children and long, dehumanizing and expensive hospital stays is the frequent outcome.
Without a specific palliative care plan in place, conflict can arise as regards the patients´ treatment path, with specialists concentrating on their area where for example a heart specialist may contradict or prioritize over a neurological consultant with neither of them treating the patient in a holistic manner.
Palliative care units are also an extra cost center for many hospitals where accounting by departments and lack of inter-relation means that they are often perceived as a drain on resources especially in a long-term context.
In-home care is often dismissed as too difficult, too expensive or too risky even despite technological advances which can alleviate these issues.
Ricardo has worked strategically on two basic levels within the public hospital system: (1) to provide training, structure and support for doctors and multidisciplinary (physiotherapists, psychologists, doctors, social workers) teams and (2) to influence the healthcare structures through the design and implementation of protocols in the Public Health Service, through the creation of the Spanish Society of Pediatric Palliative Care so that his innovative approach can be implanted all over Spain and begin to be exported. Ricardo has not stopped there but has also developed a private NGO to cover the gaps he has identified.
Supply: Giving healthcare professionals the training they need
Ricardo has created the first specific post-graduate specialization studies in pediatric palliative care in Spain. This nationally recognized online Master program has an agreement with Niño Jesús hospital, the benchmark hospital for pediatric care in Madrid, so professionals can do their internship there. It also works closely with other hospitals around Spain that have palliative care units. Around 30% of students are from Latin America and graduates of the Master program are crucial in the setting up and extension of these units back in their cities and countries of origin. To date, almost three hundred doctors and nurses have completed the Master and many of them constitute an active online community where doubts and learnings are shared.
Ricardo has also established his hospital as a Centre of Excellence and provides rotating residencies, where junior or fully qualified doctors have a learning session of one to three months then return to their hospitals to implement the knowledge acquired.
Ricardo has created the tools and the awareness amongst the younger generation of health professionals to ensure a ready supply of trained staff to fill the demand created by his awareness activities and lobbying.
Demand: Creating awareness, providing solutions, expanding outreach
With a focus on the public health service, Ricardo is growing awareness within public administrations on a national and local level. In 2014, Ricardo coordinated the first ever Pediatric Palliative Care Plan for the Spanish National Health System. His hospital was the first to implement it and provides the Care Plan to all 27 hospitals in the Madrid area.
The creation of this standard national framework sets the parameters for the best care for children in need of palliative care. The Care Plan was signed off by each Regional Health Minister (Health is devolved to the 17 regions) and he has been instrumental in implementing the plan in fifteen hospitals in different regions of Spain. His home–based psychosocial pediatric palliative care model has now been integrated as part of the public health service.
Ricardo has also surmounted financial challenges posed by health services by creating and explaining financial models that show cross-departmental savings where the Pediatric Palliative Care Plan has been implemented.
In order to raise and maintain awareness, Ricardo also participates in different congresses, talks and meetings to expand knowledge about pediatric palliative care in Spain, Portugal and Latin America.
Ricardo was instrumental in the creation of the Spanish Society for Pediatric Palliative Care, a professional network that carries out research, best practice exchange, and organizes publications and congresses. The Society has over 170 members and plays a growing role on the international stage. Their output is shared with other organizations around the world and is used to continue to bring on board hospitals. They also have imparted one-hour awareness sessions to over 400 doctors, nurses, psychologists, physiotherapists etc.
All of this work has resulted in a demand for Palliative Care specialists and departments and the incorporation of Ricardo´s protocol to pediatricians’ work throughout the different health services both in Spain and abroad.
Beyond the health system
Ricardo has identified the areas where the public system falls short and has created a private foundation to fill the gaps. The Foundation is raising awareness, training and exchanging best practices in the private sector and civil society. He has managed to raise 300.000 euros in the first two years and now has a part-time manager to continue the growth. The foundation has cemented 62 partnerships, including NGOs, private companies and hospitals and schools.
The most innovative support element is “Hospice at Home” where the Foundation arranges for nursing support at home so that families can rest or do other tasks. Ricardo´s foundation is also the formal vehicle to collaborate with different health institutions from Spain and beyond to help them improve or include pediatric palliative cares.
Expanding the impact
To date, 800 children and their families have been supported with dignified pediatric palliative cares service from the Niño Jesús Hospital. 65% of them have died in their homes. Qualitative feedback from families shows that their suffering was greatly reduced and that closure and acceptance were reached more easily.
Ricardo´s has created different structures to allow for scaling on different levels and in different areas. The residencies he offers in his own hospital can be scaled to others as they become more and more experienced. The Master program trains the next generation of doctors, so that they can create departments in their hospitals in Spain, Europe and in Latin America. The private foundation also forges international links and spreads awareness to society in general and the Scientific Society gives a voice to professionals on the international stage as well as spreading Ricardo´s wider vision on patients and treatment.
As video technology has improved, Ricardo is incorporating emerging telematic support systems into his Care Plan for local use and for international expansion. This now forms part of a module in the Master and will be instrumental in minimizing hospital visits and best practice sharing.
Ricardo is the youngest of a family of four siblings and he was attracted from a very early age to a profession that revolved around helping others. His Catholic faith was and continues to be a central pillar in his life, and the interaction of both physical and spiritual care has always been of interest driving his degree thesis and many of his extracurricular activities.
He became a pediatrician, specialized in intensive care. Throughout his years of work, he realized most children with terminal diseases died without their parents. Many parents were not properly informed about their child´s situation, and in extreme cases death took them by surprise. Doctors didn’t know how to address the situation and were not fully able to prepare the families to face the death of their children.
During his Fellowship in Switzerland, he realized that there, child death was treated as a more natural issue. After this experience Ricardo wanted to change the way palliative care was done in Spain and he focused his doctoral thesis on dignified palliative care for children and first articulated his beliefs that this new system should be child centered, home based, and health professional supported, all of which were contrary to current medical thinking and practice.
In parallel, he became involved in a project offering voluntary medical support to a hospice for children with AIDS. At that time, almost all patients died of the disease, and it was in this project that he saw how important it was for children to be hospitalized as little as possible and for them to be at the centre of decision making.
Ricardo voluntarily designed the program and lobbied the Madrid regional health service until it was approved. Over time, he has created a successful model that is being widely extended by a new generation of doctors, and so he now considers his value to lie in bringing this topic to a wider audience and to society in general. He presented his program in an informative session in the Madrid parliament as a step toward changing public policy. He will not rest until he has changed the mindset of society toward pediatric palliative care throughout the Iberian Peninsula and extended to parts of Latin America.