Expected deaths at home - a qualitative study of collaboration. / Forventet dødsfall i hjemmet ­ en kvalitativ studie om samarbeid.

BACKGROUND: It is a goal of health policy that more patients with serious illness should be able to die at home. This study elucidates the collaboration between healthcare personnel and undertakers immediately after the death, the dignity of the deceased patient and the bereaved relatives is challenged. MATERIAL AND METHOD: The study is primarily based on five focus group interviews with undertakers, GPs, nurses and healthcare workers in homecare nursing, a total of 23 participants in an urban municipality. RESULTS: The GPs and homecare nurses experienced concurrency conflicts which resulted in the downgrading of tasks concerning the deceased patient and bereaved relatives. Lack of clarity was identified concerning the doctors' verification of the death and completion of the death certificate, and the homecare nurses' personal care of the deceased patient. If the issuance of the death certificate was delayed, this had an impact on the way in which the deceased patient was dealt with by other parties involved. INTERPRETATION: The current GP system and the emergency primary health care scheme do not appear to have adequate resources for the doctor to be able to verify death and complete the death certificate, with potentially negative consequences for the subsequent work of undertakers and homecare nurses with the deceased patient and bereaved relatives.

Experiences and challenges of home care nurses and general practitioners in home-based palliative care - a qualitative study.

BACKGROUND: Norway has one of the lowest home death rates in Europe. However, it is the health authorities´ ambition to increase this by facilitating palliative care at home. The aim of this study was to achieve more insight, through home care nurses and general practitioners, of conditions that facilitate or hamper more time at home and more home deaths for patients with terminal disease and short life expectancy. METHODS: We used a qualitative research design with four focus groups with a total of 19 participants, of either home care nurses or general practitioners, using semi-structured question guides. The data were processed by systematic text condensation and encompassed thematic analysis of meaning and content of data across cases, which included four steps of analysis. RESULTS: Three main themes were identified: 1) The importance of a good start for the patient and family with five sub-themes, 2) 'Passing the baton' - the importance of collaboration across the health system with four sub-themes, and 3) Avoiding new hospitalization by establishing collaboration and competence within primary health care with four sub-themes. CONCLUSIONS: This study demonstrates that optimum palliative care at home depends on close collaboration and dialogue between the patient, family, home care nurses and general practitioner. It suggests the need for safer discharge routines and planning when hospitals transfer patients with terminal disease to their homes. A good start for the patient and family, where the initial interdisciplinary collaboration meeting takes place in the patient's home, is crucial for a good result. The general practitioners' perception of their 'disconnection' during hospitalization and prior to discharge has the potential to reduce patient safety. The family seems to be fundamental in gaining more time at home for the patient and supporting the patient to eventually die at home. Home-based palliative care demands experience and competence as well as regular supportive mentoring.

Living with advanced cancer and short life expectancy: patients' experiences with managing medication.

Our aim is to explore patients' experiences of using medicines when they are living with far-advanced cancer and short life expectancy; our method is a qualitative interview study. At a daycare centre at a palliative clinic in Norway, we interviewed 15 patients with advanced incurable cancer with multiple metastases who had a short life expectancy. We found that in taking their medications, they feared losing control, becoming addicted, or suffering harmful effects. Non-compliance was the rule, not the exception: patients juggled doses or dosage intervals, or they stopped taking the medications. They wanted to take as little medication as possible and self-manage it to gain control over their lives. We concluded that patients need to discuss their medication practice. If they choose alternative medication strategies, that choice must be respected. For patients, the issue is self-management, not compliance. Patients with a short life expectancy want to negotiate their medication practice with health care professionals and take an active role in tailoring it to suit their preferences. Health professionals should therefore consider a concordance rather than a compliance model for these patients.