Objectives To explore seriously ill, older hospitalised patients' and their family members' perspectives on the barriers and facilitators of advance care planning (ACP). Methods We used qualitative descriptive study methodology to analyse data from an interviewer administered, questionnaire-based, Canadian multicentre, prospective study of this population. Results Three main categories described these barriers and facilitators: (1) person (beliefs, attitudes, experiences, health status), (2) access (to doctors and healthcare providers, information, tools and infrastructure to communicate ACP preferences) and (3) the interaction with the doctor (who and how initiated, location, timing, quality of communication, relationship with doctor). Conclusions Based on the findings, we suggest strategies for both healthcare systems and individual healthcare providers to improve the quality and quantity of ACP with this population. These include assessing readiness for participation in ACP and personalising relevance of ACP to each individual, routinely offering scheduled family meetings for exploring a person's own goals and sharing information, ensuring systems and policies are in place to access previous ACP documentation and ensuring doctors' education includes ACP communication skills.
BackgroundMuch of what we understand about the design of healthcare systems to support care of the dying comes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognized that in addition to cancer, high quality end of life care should be an integral part of care that is provided for those with other advancing chronic life-limiting conditions. A “palliative approach” has been articulated as one way of conceptualizing this care. However, there is a lack of conceptual clarity regarding the essential characteristics of a palliative approach to care. The goal of this research was to delineate the key characteristics of a palliative approach found in the empiric literature in order to establish conceptual clarity.MethodsWe conducted a knowledge synthesis of empirical peer-reviewed literature. Search terms pertaining to “palliative care” and “chronic life-limiting conditions” were identified. A comprehensive database search of 11 research databases for the intersection of these terms yielded 190,204 documents. A subsequent computer-assisted approach using statistical predictive classification methods was used to identify relevant documents, resulting in a final yield of 91 studies. Narrative synthesis methods and thematic analysis were used to then identify and conceptualize key characteristics of a palliative approach.ResultsThe following three overarching themes were conceptualized to delineate a palliative approach: (1) upstream orientation towards the needs of people who have life-limiting conditions and their families, (2) adaptation of palliative care knowledge and expertise, (3) operationalization of a palliative approach through integration into systems and models of care that do not specialize in palliative care.ConclusionOur findings provide much needed conceptual clarity regarding a palliative approach. Such clarity is of fundamental importance for the development of healthcare systems that facilitate the integration of a palliative approach in the care of people who have chronic life-limiting conditions.
The primary goal of palliative care is to improve the quality of life (QOL) of people with a terminal illness. Previous studies of the impact of hospice/palliative care have documented improvement in physical and psychological symptoms, but not in overall QOL, due in part to the difficulties of measuring QOL. The McGill Quality of Life Questionnaire (MQOL) was developed to assess QOL in persons with advanced illness. MQOL scores were determined on admission and 7-8 days later for sequential eligible and willing patients admitted to five palliative care units. These 88 patients represented 8% of those admitted to the units during the study period. Following the final MQOL completion, patients were interviewed and asked to describe the nature of the changes in QOL they had experienced since admission. Significant improvements were found in the MQOL total score and subscale scores reflecting physical, psychological and existential well-being. In the interviews patients indicated that they had experienced changes in physical, emotional and interpersonal status, in spiritual outlook, and in their preparation for death. They also described the impact of the palliative care unit environment. This is the first study to demonstrate that hospice/palliative care can improve existential well-being in addition to psychological and physical symptoms. It provides evidence in the patients' own words that improvements in QOL go beyond symptom control following admission to a palliative care unit. However, the study results are generalizable only to those few patients admitted who are well enough to complete a questionnaire 1 week after admission.
A fundamental principle of palliative care is the provision of patient-centred care, an approach explicitly based on the patient's perspective. Although much attention has been given to determining patients’ preferences for involvement in medical decisions, choices related to personal and nursing care routines have been largely ignored in the literature. Data from participant observations of nurse-patient interactions involving 16 palliative care patients and their nurses as well as 10 in-depth open-ended interviews with patients were analyzed using grounded theory methods. Although the choices made by patients appeared uncomplicated on the surface, the context of unfamiliarity, uncertainty, and unpredictability in palliative care increased the underlying complexity of decision making. Through a process of deliberation and trade-offs, patients attempted to regain or maintain some balance in their lives. This process of striving for balance consisted of three overlapping phases: weighing things up, communicating choice, and living with one's choices.
A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration.
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