In 2012, with the publication of the Portuguese Basic Law for Palliative Care, the Portuguese government committed to palliative care and created the National Palliative Care Network. Pallliative care is provided by the public and private sector in Portugal, and Sara Margarida Rodrigues Gomes, a palliative care nurse, reflects on whether this works well for people receiving palliative care.
Healthcare professionals in Portugal recognise an asymmetry between public and private hospitals, treating different patient populations, which certainly impacts resources to deliver palliative care. This was the root of an Associação Aproximar os Enfermeiros (Bringing Nurses Together) webinar held in December 2023. Reflecting on this topic allows us to become more aware of the reality, leading us to understand the present and prepare for the future.
In Portugal, the first units to provide palliative care in inpatient settings and for communities were in the public sector, around 30 years ago, in the cities of Lisbon, Porto and Fundão. When the National Palliative Care Network was established in 2012, one of its missions was to monitor patient admissions, ensuring equity in access. But the reality is not so simple.
In the last 15 years, we have seen the interest of the private sector in creating answers for patients with incurable and advanced pathologies, whose time is running in the opposite direction. Presenting the quick response when scheduling a first appointment, there are several benefits that professionals, patients, families and society recognise in the private sector. These include reduced waiting time for appointments; guarantee of bed availability when it is necessary to admit the patient on the same day; facility in hiring staff according to increased demand; flexibility in offering other options of consultation in addition to face-to-face consultations and the guarantee of continuity of care and surveillance at home. The patient and family can feel greater control over the care provided to them when they choose where they want to be treated and hospital admissions can be reduced, where possible, by having access to wider services so crises could be managed at home.
And yet… public services are almost always the first choice for people needing pallaitive care, especially in the diagnosis identification phase and in moments of crisis. In Portugal, inpatient units, day hospitals and community care is free for palliative care patients, bringing accessible services to those who can’t afford to pay. Additionally, the commitment of public services to contributing to the training of future professionals and making sure that specialist roles are supported is recognised by people receiving palliative care, families and society. External accreditation provided by quality organisations is being increasingly sought after by the public sector as a guarantee of safety and quality of the care provided.
In recent years I have seen companies marketing their services by attempting to fill in the gaps left by poor information, pretending to encourage the empowerment of society’s patients and improving knowledge about some themes, such as the philosophy of pallative care and places to receive care1. We all need to agree that this marketing is not understood at the same level and in the same way by those who may need palliative care services2. Health literacy (accessing good quality information and understanding it) is vital to make sure people can choose the care they need.
Although the intention was to have equity in palliative care in Portugal, research3 suggests that those with more money, are more likely to have the care that they wish for (whether at the beginning of the treatment of their illness or the end of their life). This is significantly important.
For care to be truly individualised, with a greater focus on what is important to the person, there has to be choice. But why can’t we also achieve this in public services? Are political decision-makers far from reality? Or are we, as health professionals, not highlighting and reporting the gaps in care and difficulties experienced by those trying to navigate between the private and public sectors?
So perhaps the question should be – is it all about money, marketing or health literacy?
References
1) Michael Matthews, Cara Peters & Stephanie Lawson (2017) An exploratory investigation of hospice marketing: How are palliative care providers marketing their services? Health Marketing Quarterly, 34:1, 48-61, DOI: 10.1080/07359683.2016.1275218.
2) Ribeiro, O., Lima, S., & Duarte, J. (2020). Literacy in health in palliative care. Millenium – Journal of Education, Technologies, and Health, 2(5e), 281–292. https://doi.org/10.29352/mill0205e.30.00321
3) Hipkiss J (2023) How personal health budgets benefit end-of-life patients and their families. Nursing Times [online]; 119: 11.
Links and resources
- Find out more about palliative care In Portugal from the Portugal Portuguese Palliative Care Association and the National Commission of Palliative Care 2023-24.
About the author
Sara Margarida Rodrigues Gomes is a registered nurse, specialising in medical and surgical nursing, with a Masters in palliative care, and she is currently studying for a PhD in nursing. She is a lecturer at the Nursing School of Coimbra (ESEnfC) and she worked at the Portuguese Oncology Institute, in Coimbra, for fifteen years, and the last eight years in the inpatient palliative care unit. Sara is a member of the EAPC’s blog editorial team. ORCID ID: 0000-0003-4599-7345.
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