Optimale Versorgung am Lebensende aus der Angehörigenperspektive – eine qualitative Interviewstudie in zwei niedersächsischen Landkreisen

Background

Established as health insurance benefit in 2007, Specialized Palliative Home Care (SPHC) has been continuously expanded. At the same time, health policy initiatives intended to promote general outpatient palliative care. In comparison to urban centers, the development of palliative care networks in rural areas appears to be more difficult. In addition, there is an increasing shortage of family doctors in primary care. Family members play a key role in the home care for seriously ill patients. This paper therefore investigated the experiences of relatives with the end-of-life (EoL) care for family members with life-limiting chronic diseases in more rural regions. The aim was to determine aspects that, from the relatives’ point of view, are essential for optimizing EoL care.

Methods

Qualitative after-death interviews with relatives in two districts were conducted in the first six months of 2019, who were recruited by the deceased patients’ family doctor. Relatives (age ≥ 18 years) of patients who died in 2018 were included. The interviews were digitally recorded, transcribed and analyzed using content analysis.

Results

In the first half of 2019, 28 after-death interviews were conducted with 30 relatives (77% female, age: 32 to 83 years) from rural (n = 8) and urban communities (n = 22) in two Lower Saxonian counties. They were mostly in a partnership or parent-child relationship with the deceased person.

The central categories and needs that emerged in the analysis were: (1) communication about dying and death, (2) information and enabling, (3) support of and relief for relatives, and (4) continuity and cooperation of the services involved in EoL care. The results underline the fact that family caregivers in particular find open communication, information to provide them with the confidence to act, recognizing and responding to support needs and continuity in the course helpful in coping with EoL care situations. Access problems to specialist medical care, deficiencies in care coordination and bureaucratic hurdles in the provision of medical aids proved to be an additional burden.

Discussion

The results underline the importance of open communication and the integration of relatives into the care process for optimal care at the end of life. Close cooperation between the services involved and proactive support for relatives are essential, too, especially in rural areas where the challenges of accessing and coordinating care services are a major concern.

Conclusion

The identification and communication of complex problems, the needs of patients and their relatives and possible barriers to accessing care services are prerequisites for the timely initiation of palliative care measures and support for family caregivers. In addition to needs-based care structures, the optimization of EoL care in home settings requires cooperation and networking between professional stakeholders.