Experience of Security Having Access to Specialized Palliative Care Clinic

Palliative care aims to improve the quality of life for patients and families who are affected life-threatening, incurable disease. The concept of palliative care has changed over time and is not longer reserved for patients in the dying phase. More, and more studies show that early integration of palliative care and disease-specific care give positive results. Specifically, palliative care is about prevent and alleviate suffering by early detection of symptoms and treatment of physical, psychological, social and existential problems. In order to provide the best care, a holistic approach is required that takes up what is important right now for the patient, and not focus on only the diagnoses. The care should be person-centred, but it is not entirely clear how this is best achieved.

In an initiative for person-centered care, Palliative care and ASIH, Region Skåne, was the first region in the Sweden to established a new form of care; 'Palliative specialist outpatient clinic' (which was done in 2021). This initiative is a way to support patients who are still receiving disease-specific treatment at their home clinic, which are not specialized in the palliative care needs that may arise. At the same time, the patients do not have that great care needs that they need to be enrolled in specialized palliative care 24/7.

Patients are invited to the study in connection with enrollment at ASiH. All patients who are referred from Palliative specialist reception are consecutively asked about participation in the study. For each patient who previously had contact with the Palliative Specialist Clinic, a patient referred directly from disease-specific care/primary care will be included as to the control group.

Data collection will take place through a self-developed questionnaire where the patient is asked about his experience of security and accessibility in the last 3 months before enrollment in ASiH. Survey questions about safety and accessibility have been chosen as far as possible from among validated questionnaires. If the patient agrees, relatives will also be invited to answer a similar questionnaire. Data on health care consumption, diagnoses and symptoms are collected through Region Skåne's Vårddatabaser and journal review.