SB: Can you describe your work in children’s palliative care?
NR: Since we started developing CPC in 2003, my work is divided among the care of children with oncology diseases receiving chemotherapy and the care for children and their families who require palliative care when cure is no longer possible. I work with a team composed of a nurse, paramedic technician, a pharmaceutical chemist and a psychologist. We have served approximately 110 households. Half of them received the direct attention of our team and the other half, as they return to their own home towns, our group coordinates their care with local health teams, trains caregivers in managing symptoms and medications at home.
Also between 2003 and 2010 I was the coordinator of this programme for the whole country, because in every paediatric cancer centre network of public hospitals in Chile there is a palliative care unit responsible for caring children with advanced cancer disease. This programme has served nearly 500 children since its inception, assisting more than 50% of our patients to die at home.
SB: What led you to choose this field of care?
When I started working in paediatric oncology in 1998, I realised that although there was progress in the survival of these patients, there was a percentage of them who died due to the disease progression and there was no special coordination to address the needs of these patients, producing much anguish in the family and the team. Since palliative care was organised and teams were trained, we have managed to provide quality care. Once we had organised this attention for children with cancer, other specialists in our hospital have approached our team to seek similar care for children with life-limiting diseases other than cancer, and this has allowed us to raise with local authorities the issue that this is a growing need that must be supported.
SB: So what would you say is the status of children’s palliative care in Chile at present?
In Chile, the infant mortality rate is 7.8 per 1,000 live births and each year around 800 children aged 1–15 years die for various reasons such as trauma, violence, cancer and other life-limiting illnesses. Currently, palliative care (PC) is organised in paediatric hospitals, specifically in oncology units. However, it has been increasingly recognised that there is a need to develop PC units to provide care to children with other conditions. Cancer is the second leading cause of death in children between 5 and 15 years. It is estimated that there are 520 new cases annually and of these, 85% are treated in the public health system. In 1988 the Children’s Cancer Program (PINDA) was started, dependent on the Ministry of Health, which works in a cross country network. The strategies for diagnosis, treatment and appropriate follow-up of children in the programme have yielded an overall survival of 70%; however, despite this, 30% of children die from disease progression. Since 2003, this group has access to a multi-care PC model which is given as a continuum of care throughout the progression of the disease, without referring patients to another team that does not know the patient or his/her family. The current challenge is to develop this type of care in other clinical situations, based on the experience gained in paediatric oncology and using the platform that delivers the public health system to ensure quality of service and fairness.
SB: What training in CPC is available to professionals in Chile?
For the development of the PC programme, meetings are held monthly involving a group of experts in the field who provide advice to the director of the programme in the ministry. In addition, every year, during the first week of October, a “Day of Evaluation” of the PC programme is held. During this event, the annual technical report analysing the number of cases handled, their demographic characteristics, relevant symptoms, and the level of completion of the health objectives is released. Adults and children representing all PC teams in the country participate in the conference, as well as national and foreign guests who discuss other topics of interest to palliative care.
Regarding education, members of the PC teams give frequent classes to undergraduate students in Nursing Schools, both in public and private universities, even if such a palliative care teaching topic does not officially exist. At the postgraduate level, during the training of Specialists in Haematology and Paediatric Oncology at the Faculty of Medicine of the University of Chile, students participate in palliative care activities created by the PC team, both in hospital settings and at home. In addition, the Pontifical Catholic University of Chile offers a specialisation in paediatric oncology for nurses, which includes an in-depth course in Palliative Care.
Considering the lack of university programmes to train specialists in Palliative Medicine, the Ministry of Health established a strategic alliance with Spain to train staff via a distance learning degree called “Advanced Course in Palliative Care”. This programme is supported by the Ministry and the Spanish Health Cabinet (GAFOS). Subsequently, another strategic partnership with the Postgraduate School of the Faculty of Medicine of the Universidad Mayor (a private university) was established. In 2006, the training of specialists in Palliative Medicine was initiated as a test for a period of 14 months, totalling 2082 academic hours. This programme has now been discontinued, but there is interest in re-initiating it at the University of Chile, which is a state university.
Despite the intent of the Ministry of Health to increase the number of palliative care experts, this initiative is still insufficient, given the increasing demand for palliative care in the different services of the public health network. A degree in Palliative Care Oncology offered through the Digital Learning Network (MEDICHI) of the Faculty of Medicine of the University of Chile focuses on adults’ care training, but in the near future concepts of paediatric palliative care will be included.
Professionals who work in PC for adults and children actively participate in scientific activities (nationally and internationally) such as those organised by the Latin-American Association of Palliative Care (ALCP) which, in 2010, established the Commission of Paediatric PC which is in charge, among other missions, of establishing the standards of care for children in palliative care in countries of Latin America.
Regarding research in paediatric palliative care, I can say that at the moment this is not considered a priority. There is no support from the Ministry of Health or funds available at the local level to develop research. There are few publications or participation in collaborative research protocols. Some teams are developing descriptive research, but efforts are made to consolidate projects with wide topics through initiatives such as the ALCP.
SB: How easy is it for children who need CPC to access these services?
There is no national registry of children with Life Limiting Diseases (LLDs). Some national publications suggest that the group of paediatric patients with “chronic disease” represent 34% of hospital expenses. Since 2008, the Chilean Society of Paediatrics has a multidisciplinary committee in charge of organising the care of children and adolescents with special health needs (NANEAS) in the different health centres, but so far it has not been possible to obtain an exact number of children requiring such special attention.
Of all the LLDs, cancer has the highest probability of cure. In our country, it is estimated that 480–520 new cases of child cancer are diagnosed each year, and with the development of the national Children Cancer Program (PINDA) by the Ministry of Health of Chile, the prognosis of children with cancer has improved, achieving a survival rate of 73%. However, despite the progress made so far, approximately 120 children die from cancer each year. One third of these children die from complications of the disease or from complications resulting from treatment, and two thirds die from advanced disease that has not been responsive to treatments currently in use in our country.
This group of patients has been the focus of the Pain Relief and Palliative Care (PC) program in an organised manner since 2003.
Private health organisations, which serve a smaller section of the population with greater economic resources, provide PC support for children and their families mainly in oncology units. At home nursing care is also available and must be financed by parents or health insurance. Care systems organised and coordinated by the Ministry of Health do not exist for other LLDs that affect children, and these children count on local initiatives to provide care (e.g., NANEAS Unit in Hospital Sótero del Río, southeast of Santiago). However, in recent years there has been a growing awareness of the issue, resulting in the formation of Committees of Pediatric PC in hospitals to coordinate the care of children with non-oncological diseases. The first in the country was formed in 2010 in my hospital (the Children’s Hospital Roberto del Rio) which has an assigned population of approximately 400,000 children who are under the age of 15, have limited economic resources, and come from the North of Santiago and the 3rd and 4th regions in the North of Chile. The mission of this Committee, involving professionals from different paediatric specialities, is to make a diagnosis for the need of specialised PC at the local level and, based on this information, coordinate and organise a team to respond to these needs in patients with diseases that are neurological, genetic, respiratory, etc.
SB: What support do CPC services receive from government and non government agencies?
For the Chilean Ministry of Health, cancer is a public health concern. Although child cancer cure rates are high, one third of these patients will die from disease progression or complications resulting from it. Considering this background, it was decided in 2003 to incorporate Palliative Care for advanced cancer into the health reform. This reform includes, in addition to other modifications, the addition of Palliative Care to the regulations of “Explicit Health Guarantees”, which means that health centres are mandated by law to guarantee access, opportunity, financial coverage, and quality of care for patients in the public health system.
The guarantee of “access” implies that all patients with cancer who require PC must receive it, without exclusion. Regarding the guarantee of “opportunity”, patients must received PC in no more than 5 days from the moment the diagnosis of advanced cancer is made and it is determined that there is no possibility for a cure. As for the guarantee of “financial coverage”, the Ministry of Health guarantees the financing of a “basic basket” of drugs and procedures included in the PC Protocol. Finally, the guarantee of “quality of care” means that health care protocols are evaluated and updated annually in accordance to recommendations made by groups of experts and evidence available nationally and internationally.
Bereavement support for parents: To date, two support groups for parents who have lost a child to cancer have been created. These are called “Living again” and “Learning to live again”. Both groups operate in Santiago, and have been evaluated positively by participants.
SB: What has been your greatest achievement to date?
NR: I think the main achievement has been to raise the profile of paediatric palliative care as an important health issue and that we have also managed to organise a nationwide network of care for a specific group of patients, but with the possibility of using this network for other children with life-limiting diseases. No doubt there are huge challenges ahead.
SB: What is your greatest need at present and what are the major challenges you face?
NR: Our greatest need now is the training of health teams in non cancer patients who need palliative care (e.g. neurology), in addition to implementing a unit of care for children with special health care needs.
SB: What does the future hold for your organisation and the work that you are doing?
NR: As I mentioned before our challenge is to organise a unit of paediatric palliative home care, following the model of the Palliative Care Unit of the Hospital Niño Jesús de Madrid and the standards proposed by the Paediatric Committee of the EAPC.
Interview with Dr Natalie Rodriguez: 14 March 2013