Would primary care services benefit from the aid of a clinical ethics committee (CEC)? The implementation of CECs in primary care in four Norwegian municipalities was supported and their activities followed for 2.5 years. In this study, the CECs’ structure and activities are described, with special emphasis on what characterizes the cases they have discussed. In total, the four CECs discussed 54 cases from primary care services, with the four most common topics being patient autonomy, competence and coercion; professionalism; cooperation (...) and disagreement with next of kin; and priority setting, resource use and quality. Nursing homes and home care were the primary care services most often involved. Next of kin were present in 10 case deliberations, whereas patients were never present. The investigation indicates that it might be feasible for new CECs to attain a high level of activity including case deliberations within the time frame. It also confirms that significant, characteristic and complex moral problems arise in primary care services. (shrink)

BackgroundHow should clinical ethics support services such as clinical ethics committees (CECs) be implemented and evaluated? We argue that both the CEC itself and theimplementationof the CEC should be considered as ‘complex interventions’.Main textWe present a research project involving the implementation of CECs in community care in four Norwegian municipalities. We show that when both the CEC and its implementation are considered as complex interventions, important consequences follow – both for implementation and the study thereof. Emphasizing four such sets of (...) consequences, we argue, first, that the complexity of the intervention necessitates small-scale testing before larger-scale implementation and testing is attempted; second, that it is necessary to theorize the intervention in sufficient depth; third, that the identification of casual connections charted in so-called logic models allows the identification of factors that are vital for the intervention to succeed and which must therefore be studied; fourth, that an important part of a feasibility study must be to identify and chart as many as possible of the causally important contextual factors.ConclusionThe conceptualization of the implementation of a CEC as a complex intervention shapes the intervention and the way evaluation research should be performed, in several significant ways. We recommend that researchers consider whether a complex intervention approach is called for when studying CESS implementation and impact. (shrink)

Questions on what it means to live and die well are raised and discussed in the hospice movement. A phenomenological lifeworld perspective may help professionals to be aware of meaningful and important dimensions in the lives of persons close to death. Lifeworld is not an abstract philosophical term, but rather the opposite. Lifeworld is about everyday, common life in all its aspects. In the writings of Cicely Saunders, known as the founder of the modern hospice movement, facets of lifeworld are (...) presented as important elements in caring for dying patients. Palliative care and palliative medicine today are, in many ways, replacing hospices. This represents not only a change in name, but also in the main focus. Hospice care was originally very much about providing support and comfort for, and interactions with the patients. Improved medical knowledge today means improved symptomatic palliation, but also time and resources spent in other ways than before. Observations from a Nordic hospice ward indicate that seriously ill and dying persons spend much time on their own. Different aspects of lifeworld and intersubjectivity in the dying persons’ room is presented and discussed. (shrink)

BackgroundAs part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members’ participation (...) and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning.MethodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.ResultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.ConclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences. (shrink)

An amendment to this paper has been published and can be accessed via the original article.