In statements to Lusa regarding the monitoring by the Health Regulatory Authority (ERS), which concluded that last year almost half of the patients referred for palliative care hospitalization in the National Network of Integrated Continuous Care (RNCCI) died while waiting for a vacancy, the president of APCP (Portuguese Association for Palliative Care) says that funding is not the only problem.
“There are several problems, or various explanations for this issue: one of them is, in fact, the organization and coordination between the two networks, the continuous care and the palliative care,” said Catarina Pazes, emphasizing that this integration “has been failing.”
Recalling that palliative care, in addition to this aspect (of integrated care), also includes hospital and community responses, the official acknowledged that “adequate funding” is needed for a good response and to ensure the quality of care.
“And that has been failing from our perspective,” she added.
Catarina Pazes stated that the funding to offer more beds has not been sufficient, but emphasized that “financial investment alone is not enough,” recalling the need to invest in training and skill acquisition for “adequate professional development” by professionals working in these units.
Only then – she said – can a “good response in all contexts” be guaranteed.
“A patient waiting for a vacancy in a palliative care unit of the national continuous care network is a patient who, while waiting, is at home or in the hospital, or resorting to the emergency service, or in a different social response, and wherever they are, they need to be attended to and have their needs met,” she stated.
She said this does not happen “because there is no prompt and timely response (…) in all contexts.”
“There is no guarantee that palliative care teams will respond in a timely manner, and there is no guarantee that other professionals have some training and competence in this area, in order to identify needs and respond,” she added.
The ERS report also mentions that more than one in 10 (12%) patients referred and admitted in 2023 lived more than an hour’s journey from the unit where they were hospitalized and points out the absence of these palliative inpatient units in the RNCCI in the Central and Algarve regions.
Asked about this reality, Catarina Pazes lamented and recalled that often when the patient is placed more than an hour away from home, they end up giving up the vacancy.
“We are talking about distancing people who are in a crisis situation – often in a situation close to the end of life or where the risk of this happening is very high – from their loved ones at this stage, which means that many patients end up not accepting,” she exemplified, insisting that this situation is “greatly unfair” and aggravates the disparity in access.
This disparity – she insisted – “not only in terms of the existence of beds but also in terms of the existence of palliative care teams, both in the community and in-hospital, with the necessary conditions to respond to all existing needs.”
The official argues that this area “should be a priority for everyone,” to give dignity “to all moments of life marked by serious illness.”
“Whether for adults or children,” said the APCP president, emphasizing that in pediatric palliative care, the response is even worse: “there is practically no response in terms of hospitalization and (…) community teams that support children and families living in difficult situations in the community.”
And she concluded: “There are parents who are caregivers for life and who do not have support and an opportunity to have caregiver respite because there are no units that guarantee hospitalization with the safety and care that children need.”
