Each year, the IAHPC awards several grants to people who are working in palliative care in low- and middle-income countries enabling them to attend education and training events where their oral or poster presentation has been accepted. In May, we were delighted to provide grants enabling 11 people to attend the 14th World Congress of the European Association for Palliative Care, held in Copenhagen, Denmark, on 8-10 May.
In this edition, we are delighted to publish three more contributions from traveling scholars from Brazil, Colombia and Moldova that give an insight into palliative care in their countries and explain how their participation at the congress may influence their work.
Juliano Ferreira Arcuri is a physiotherapist and a PhD student in the Federal University of São Carlos, Brazil. Here, he explains how IAHPC support has changed the direction of his research and gives some impressions of his attendance at the 14th EAPC World Congress.
“In my university, there isn’t a palliative care group doing research, treating patients, or stimulating the palliative care approach in the university hospital. The congress has encouraged me to think outside the box and [given me] the incentive [for] the creation of a palliative care service.”
In 2011, I started working in a palliative care ward, in the Americo Brasiliense State Hospital. The hospital administration understood the importance of investing in palliative care and encouraged its employees to study and to apply the best possible care to its patients – that is why they recently received a ‘best hospital award in the São Paulo State public health system’. I had already started a Ph.D., researching pulmonary rehabilitation, when IAHPC funded me to go to the 7th World Research Congress of the European Association for Palliative Care in Trondheim, Norway (2012).
After my experience in this congress, my Ph.D. supervisor (Prof Valéria A. Pires Di Lorenzo) and I decided to change the area I was researching to ‘respiratory physiotherapy in palliative care’. We sought help from the International Observatory on End of Life Care (IOELC) in Lancaster, United Kingdom, and they agreed to guide us in exploring the potential of respiratory physiotherapy in a palliative care context. I will always be thankful to them, especially Dr. Nancy Preston who agreed to co-supervise my thesis.
The most upsetting issue I saw while working in the hospital was the care of patients who presented with mucus hypersecretion. The palliative care guidelines deal with this issue mostly in the last days of life (death rattle), but I found few studies about palliative care patients presenting with hypersecretion due to infections, cough inefficiency or increase in the mucus production. In practice, the nurse and physiotherapy staff were repeatedly facing a dilemma when deciding if they should perform suctioning or not when drugs weren’t enough to control this symptom.
I received funding from CAPES (a Brazilian government agency) to develop a research study to verify alternatives to suctioning, and left the hospital to focus on my Ph.D. I was able to work in the IOELC for nine months, which was a life-changing experience.
The 14th EAPC World Congress in Copenhagen was a great opportunity to show the first results of my thesis, and I have to thank IAHPC for funding me again to bring these results to the congress. I was able to listen to experts talking about topics that are a challenge in clinical care and research. This may change my clinical practice and also influence my work as a researcher, as well as giving me some excellent ideas for new studies.
Additionally, the congress enabled me to get to know more Brazilians who are working in palliative care and to discuss the development of palliative care in our country. Brazil is a continental country and talking about it as a whole is always a challenge – most of us do not know what is happening on the other side of the country! In palliative care the scenario is no different; despite the efforts of national palliative care associations there is still a lack of communication among services, which are usually restricted to university hospitals, or specialized oncology centers.
A study from Lynch, Connor and Clark (2013) classified Brazil as a country with isolated provision of palliative care, and it was clear from discussion at the congress that we still feel isolated. Therefore, communication of good practices among services may be one of the main steps towards better development of palliative care in Brazil.
My experience at the 14th EAPC World Congress in Copenhagen was important for the development of my career, for the care I will provide to my patients and, in the future, to the students I will teach. However, the biggest impact was the perception of myself as one of the many people responsible for developing palliative care in Brazil, and I understand that communication is the key issue to start this process.
Dr Natalia Carafizi, Medical Coordinator of Hospice ‘Angelus’, Chisinau, Moldova.
“Participation in plenary sessions, parallel meetings and free communication sessions was very precious due to the importance and updates of the presented and discussed information.”
Any congress is a good place to meet familiar faces, to gain new professional contacts, to discuss face-to-face past and present activities and to plan future projects. But the EAPC Congress also offered the chance to meet palliative care professionals from countries of the former Soviet bloc, such as Georgia, Ukraine and Russia. This was important because of the similarities of the problems we face in developing palliative care and the opportunities to overcome barriers and develop mutual collaboration.
Together with my colleagues I presented two posters, one of which described the achievements over the past 13 years of our home-based palliative care service in Moldova. The other described the long-awaited progress in introducing alternative oral and patched forms of strong opioids, as well as oral methadone, to control chronic pain in cancer, in a country where, for many decades, only injectable strong opioids had been available. I was impressed by the diversity and high quality of congress posters and inspired by the activities that are taking place in palliative care in different countries of the world.
Moldova is one of the countries where access to medications to control chronic pain in cancer and other symptoms has been improving gradually since 2010, so the chance to get acquainted with new pain control medicines was of special interest to me. The congress has also enabled me to visualize new directions in the organization of palliative care services; to get updated information on modern medical equipment to facilitate the daily care of bedridden patients, and to learn about potential international projects that our country might take part in. And, of course, to share what I learnt with my workplace colleagues and other healthcare professionals working in local palliative care institutions, as well as with the Moldovan health authorities and policymakers.
I would like to express my deepest gratitude to the IAHPC for making my attendance at the congress possible and for its enormous support to palliative care development worldwide.
Sabrina Carvajalino Palacio is an internal medicine attendant at Hospital Universitario Fundación Santa Fé de Bogotá in Colombia and has an MSc in Palliative Care.
“… seeing people from around the world and their passion for palliative care made me feel there is a lot of work to be done but also that we have come a long way in the development of services. The congress reinforced my desire to create awareness of end-of-life care, advance care planning and the implementation of hospice care as a concept in Colombia, as well as the continued care of family members and other caregivers after the patient´s death.”
Palliative care is an ever-growing field in Colombia, not that different from many other countries. Even though there are recognized schools training doctors and nurses in this area, the biggest challenge remains in getting less privileged populations to have access to palliative care.
A few months ago, a new law was passed in Colombia, recognizing the right of every patient with any type of life-limiting irreversible condition to receive palliative care. All patients and their families should have access to care whether they have private or public health insurance. A lot needs to happen in order to create the infrastructure and resources needed to meet these requirements. Many remote areas, with difficult access, low levels of education, and hardly any access to pain medication, abound in my country.
During the sessions I attended there was little, if any, mention of euthanasia – a subject that needs to be addressed in Colombia. Recently, the Ministry of Health developed the rules to implement an euthanasia law which was adopted several years ago and passed by the Supreme Court, but had not been regulated. Suddenly, we are faced with a new array of ethical dilemmas, when we should rather be focusing on the development of palliative care services, disease prevention and promotion, and the education of healthcare providers. So, the biggest challenge we face nowadays is meeting the requirements made by these laws and in some cases finding the strength and unity to refute them when they are not realistic.
What I learned during the congress reinforced the notion that we are way past the phase in which we showed the world the ‘beauty’ of accompanying patients and their loved ones on the journey to a ‘good’ death. We need to continue to show through hard facts the cost-effectiveness and benefits of providing palliative care and that care must be balanced between evidence-based medicine and individualized attention. Seeing how research is conducted in a multidisciplinary environment, as well as across countries, in the European region, is an inspiration for those working in Latin America. Also, the amount of research in patients with chronic obstructive pulmonary disease, liver disease, heart failure, highlights the importance of further exploration in these fields. Only through research will we be able to find a common ground and balance what the law states, what patients and families want, the preservation of human rights, work ethics, so that we can provide the best care possible.
I am grateful to IAHPC for giving me the opportunity to participate in this Congress.