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Marinela and Wim van den Heuvel

PACARO   Back to projects page

PACARO (PAlliative CAre in ROmania)  was directed to the development of palliative care at home in Romania. Palliative care was and is rare in Romania.  PACARO is executed in 2002-2004 and was granted by the Dutch Ministry of Foreign Affairs.

It intended to set up an new palliative care service at home, i.e. palliative home care by multidisciplinary teams and evaluates the new service. The project was called PACARO (PAlliative CAre for ROmania). The project was started, because there is a great need for palliative care in Romania. But there are possibilities since the development of palliative care during the last decade in Romania followed the recommendations of the World Health Organization. Palliative care aims to improve the quality of a patient's life through specialized medical services.
The results of PACARO are shortly summarized. Five multidisciplinary teams were trained in the palliative field and these teams provided palliative care at home to 129 patients suffering from incurable diseases in different terminal stages, both in urban and rural areas in two years.
The experience and opinions of the Romanian GPs regarding palliative care shows, that although over 98% of the GPs had provided services to incurable or terminal patients, the majority has limited experience and knowledge regarding palliative care. Most GPs believe that the development of at-home palliative care services is necessary, in view of the Romanian tradition of dying at home instead of in an institution. Most GPs see themself as coordinator of the palliative care team.

As compared to studies abroad, the patients enrolled in the new palliative care service in Romania show a very high number of symptoms: on average 12.8 symptoms per patient, with a sizable difference between the urban and rural areas. A similar pattern is found for the number of metastases in urban and rural areas. Pain is the most frequently reported symptom by 90% of the patients. This differs from data in Western Europe. More than half of the patients indicates psychological problems. Here too a sizable difference exists between patients in urban and rural areas (71% in urban areas and 25% in rural ones.

After enrollment in palliative care, patients show a strong reduction in number of symptoms and intensity of pain. The average number of symptoms decreases by 8. High intensity of pain is reported by 42 patients at enrollment and by 7 patients at the last consultation before death. Fatigue, loss of appetite and nausea also decline significantly between the first and last consultation.

Interventions by the members of the palliative care team are numerous and varied. Medication is changed for three quarters of the patients. Consultation is the intervention most frequently mentioned, followed by interventions directed at relief. Doctors’ interventions include small surgery interventions, perfusions and venous punctures. Nurses’ interventions include oral medication, artificial alimentation, injections and functional exercises.

Over half of the patients stated that the teams’ interventions provide good results for all their problems, and one third states that the number and/or intensity of the problems were reduced.

The delivery of palliative care my put a burden on the professionals involved. The views of the professionals involved are analyzed after the death of the patient. The majority of team members givse a positive evaluation of their activities within the team, the services provided to the patient, and their knowledge of palliative medicine. The GPs and the nurses are more modest about their knowledge and admitted they had to improve their knowledge, especially in the case of complications. About one quarter of respondents reportes communication problems with the patient, which was explained by the unwillingness of family members to inform the patient about diagnosis and/or prognosis. Over one third of the professionals reportes an emotional burden and discomfort caused by the patients’ suffering, but most do not consider this an unreasonable burden.

The quality of palliative services provided to the patients can also be measured by asking the family members involved about their satisfaction and opinion regarding the service. Family members of the deceased patients are asked about their experience and opinion. Family members express satisfaction with the care provided to the patient. This is especially true for family members who played a role as central caregivers. The information received is qualified as (very) good by most family members and the communication with the team members is judged as good. The care provided do not generate family conflicts or conflicts with team members. On the contrary, family members report that such care reduced the risk of family conflicts. Generally, the family’s expectations are fulfilled, but there are cases where the family has higher expectations from the team. This occurs when family members ask for help in obtaining the drugs needed. Most of the families would recommend this type of service to other terminal patients or to their families.

It is concluded that more centers for palliative care at home as well as regional expertise (consulting) centers are needed. The Ministry of Health needs to become directly involved in organizing this type of service, whereby the professionals involved could be compensated via the health insurance system. This might provide all terminal patients with access to specialized services, which could improve their quality of life and alleviate their suffering. It is also concluded, that the further development of palliative care in Romania is a necessity from both the patient’s and the health professional’s point of view.