Do Patients with Life-Limiting Diseases Perceive a Need for Early Palliative Care? Interview Study about Experienced Care Needs and Seeking for Help from Diagnosis Onwards

Background. Despite the increased attention for early palliative care, research shows us that many patients, especially non-cancer patients, do not receive palliative care or are referred relatively late. Reasons for these late shift to palliative care often fall into three main categories: the health care system level, the health care professionals' level or the patient/ family level.
Aim. to offer insights in how patients with a life-limiting disease experience and give meaning to certain problems experienced during their disease course and accordingly will search for formal help (or not) and would benefit from early palliative care.
Methods. We conducted 18 qualitative semi-structured interviews with patients with cancer, copd, heart failure or mild dementia. Patients were at different stages across the illness trajectory. We analyzed the data based on thematic analysis and tried to describe and understand how patients experience their health related problems and accordingly why a gradual shift to palliative care is difficult in practice.
Findings. Within the different domains of palliative care (ie physical, information, financial, social, practical, psychological, existential) we found unmet care needs of patients during their disease course, from diagnosis onwards. The help seeking behavior and perceived need for professional care differed according to the domain of care, the stage of disease and sometimes disease. The most important themes we found were: internet resources for insufficient information, physical and psychological problems lead to feelings of isolation, medication for depression and anxiety, acknowledgment of the life-limiting disease leads to thinking about death and dying and sometimes planning and specialist palliative care is involved when physician offers this to patient.
Conclusion. Our study showed that some patients with chronic life-limiting disease experience care needs early in their disease trajectory for which a palliative care approach could be meaningful. Awareness of these needs, good assessment and communication from professional care givers is necessary to meet these patients' care needs.