A good death from the perspective of patients with severe illness and advance care planning (ACP) in patients near end-of-life

Abstract: Previous research has indicated that what constitutes a good death is heterogenic and complex although there are some recurrent themes and similarities regardless individual background factors. Studies on advance care planning (ACP), i.e. making proactive plans regarding content of care and treatment limitations, on nursing home (NH) patients are rare. Positive effects of ACPs are shown, but also that these often are lacking. The overall aim with this thesis was to explore the perceptions of a good death from the perspective of patients with severe illness and to investigate, from different perspectives, experiences of ACP in a NH context. In paper I, patients with cancer in a palliative phase were interviewed on their perceptions of a good death. Death was viewed as a process and previous experiences on the death of others influenced their own perceptions. A good death was associated with living with the prospect of imminent death, preparing oneself and others for one’s death and dying comfortably, e.g. without suffering, with independence and with social relations intact. Some were comforted by their belief that death is predetermined, and that after death, there is something else. Others felt uncomfortable when they viewed death as the end of the existence. In paper II, nurses and physicians were interviewed on their experiences of the factors that shape the ACP process in NHs. Exploration of the patient’s preferences regarding content of care and treatment limitations was important, as well as integration of the patient’s preferences and the views of the family members and staff concerning these questions. ACP documentation had to be clear, updated and available for staff and the implementation and reevaluation of ACP were also considered important, according to the participants. Significance of clinicians’ perceiving beneficence as well as fear of accusations of maleficence were shown to be essential factors to contemplate. In a retrospective chart review (paper III), medical records of 367 deceased NH patients were analysed. A high prevalence of ACP was shown, using two different definitions of ACP (ACP I and ACP II). Moreover, adherence to the ACP content was strong and positive associations were seen between ACP and variables of the three research aims, such as: diagnosis (dementia), physician attendance at NH and end-of-life (EOL) care. In paper IV, family members of deceased NH patients were interviewed on their experiences of ACP in NHs. EOL issues were challenging to talk about, although the family members appreciated staff raising these questions. The patient’s preferences were sometimes explicitly or implicitly communicated. However, in some cases, family members had a feeling of the patient’s preferences, although they had not been clearly communicated. Everyday details symbolised staff commitment. The family members viewed the nurse as central. The physician was described as absent and ACP meetings often went unnoticed. Both involvement and lack of involvement could cause the family members feelings of guilt. In conclusion, we found that what constitutes a good death is highly individual, although recurrent themes are seen. EOL conversations are important and challenging and need staff training and experience. It seems important to support healthcare staff not only to initiate ACP in NH patients, but also to involve the patient and family members in the ACP and planning EOL care. Making proactive plans regarding content of care including treatment limitations, could enable patient autonomy, optimise the chances for the patient to experience a good death and enhance for the family members during the dying trajectory and after the patient’s death.