Short summary

Although several issues may be common to patients and families, studies show that factors important to quality at the end of life differ by role and by individual and research does not clearly prescribe a model for out-patient Specialized Palliative Care (SPC). I this study we compare two different ways of organizing outpatient SPC and two perspectives represented in independent studies will highlight the purpose being patient and families' experiences of the two outpatient SPC models.

Rationale

Patients with serious or terminal illness typically suffer from a reduced quality of life (QOL) and multiple symptoms, such as pain, fatigue, and dyspnea because of their illness and/or its treatment. Ideally, these patients should receive palliative care, addressing their specific needs. The many well-defined clinical pathways in general ensure this, but they may not always leave room for a person-centered and individual approach concerning symptom control, psychosocial and spiritual support, as well as practical issues. 

While many have studied in-hospital SPC much fewer have investigated outpatient SPC in connection with home visits. As a result of this, many published studies does not include standardized outpatient SPC-models why comparing interventions, organization or clinical results is problematic. 

Also in Denmark, results are not clear though it seems that most patients and families are very satisfied with the SPC they receive. In a study including patents representing the whole country, results show a high degree of satisfaction with communication, and that factors influencing satisfaction are the patients' age; weather they live with a spouse or alone; and where they are staying when cared for. Dissatisfaction was found concerning families' involvement in the treatment and staffs interest in their wellbeing. This is supported by another study examining experiences of seriously ill patients' families, which found that the professional practice meets neither families' needs nor their expectations.

Although several issues may be common to patients and their families, studies show that factors important to quality at the end of life differ by role and by individual, and research does not clearly prescribe a model for out-patient SPC. Thus, when deciding how to organize outpatient SPC in the future, it is relevant to study outpatient SPC and include patients and families experiences.

The overall purpose of this study was to compare two different ways of organizing outpatient SPC, to gain new knowledge about symptom control, QOL and satisfaction, on outpatient SPC and to include this knowledge in future organization. We examined both patient and families' perspectives, in a mixed method study including questionnaires and interviews.

Description of the cohort

Included were adult patients admitted to outpatient SPC at Zealand University Hospital, Department of Oncology and Palliative Care, who had at least one consultation and one of their close family members/friends. Patients were excluded if they did not understand or speak Danish, or if they are considered not able to participate due to physical, mental or social reasons.

Collaborating researchers and departments

Department of Research Support, Zealand University Hospital

• Professor Bibi Hølge-Hazelton

Department of Oncology and Palliative Care, Zealand University Hospital

• Chief Physician Birgit Åbom

The Danish Knowledge Centre for Rehabilitation and Palliative Care

• Senior researcher Mette Raunkiær