Caregivers' active role in palliative home care – to encourage or to dissuade? A qualitative descriptive study

<p>Abstract</p> <p>Background</p> <p>Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.</p> <p>Methods</p> <p>The study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses.</p> <p>Results</p> <p>Four main categories were found: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked).</p> <p>Conclusion</p> <p>The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.</p

Hospitalisations at the end of life: using a sentinel surveillance network to study hospital use and associated patient, disease and healthcare factors

<p>Abstract</p> <p>Background</p> <p>Hospital deaths following several hospital admissions or long hospital stays may be indicative of a low quality of dying. Although place of death has been extensively investigated at population level, hospital use in the last months of life and its determinants have been studied less often, especially in Europe and with a general end-of-life patient population. In this study we aim to describe hospital use in the last three months of life in Belgium and identify associated patient, disease and healthcare factors.</p> <p>Methods</p> <p>We conducted a retrospective registration study (13 weeks in 2004) with the Belgian Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian patient population. All registered non-sudden or expected deaths of patients (aged one year or older) at the GPs' practices were included. Bivariate and regression analyses were performed.</p> <p>Results</p> <p>The response rate was 87%. The GPs registered 319 deaths that met inclusion criteria. Sixty percent had been hospitalised at least once in the last three months of life, for a median of 19 days. The percentage of patients hospitalised increased exponentially in the last weeks before death; one fifth was admitted in the final week of life. Seventy-two percent of patients hospitalised at least once in the final three months died in hospital. A palliative treatment goal, death from cardiovascular diseases, the expression of a wish to die in an elderly home and palliative care delivery by the GP were associated with lower hospitalisation odds.</p> <p>Conclusion</p> <p>Hospital care plays a large role in the end of patients' lives in Belgium, especially in the final weeks of life. The result is a high rate of hospital deaths, showing the institutionalised nature of dying. Patients' clinical conditions, the expression of preferences and also healthcare characteristics such as being treated as a palliative care patient, seem to be associated with hospital transfers. It is recommended that hospitalisation decisions are only made after careful consideration. Short admissions in the final days of life should be prevented in order to make dying at home more feasible.</p

Healthcare organizations, linguistic communities, and the emblematic model of palliative care Organizações de saúde, comunidades lingüísticas e o modelo emblemático dos cuidados paliativos

The linguistic-communicative paradigm offers some interesting perspectives in a context where the perception of patient needs is considered a critical step in high-quality care. This study describes healthcare organizations as linguistic communities based on the conceptual framework of Habermas' communicative action theory. Four communicative models are present in healthcare settings: objectifying-instrumental (hegemonic model), where elements of interaction are objectified for clinical purposes; dialogic model with strategic perspectives, in which conversations are used unilaterally as tools to access subjective states; non-dialogic-transmissional model, in which linguistic exchanges are replaced with artifacts to transmit information; and full communicative model (present in palliative care based in homecare and informal caregivers, emphasizing health team/family interactions). Based on these premises, we considered palliative care an emblematic communicative model based on multidisciplinary teams devoted to transdisciplinary collaboration. In these settings, linguistic interaction with patients and their families could provide a solid basis for organization of healthcare networks.<br>O paradigma lingüístico-comunicativo tem a oferecer perspectivas interessantes em um contexto no qual a percepção das necessidades dos pacientes é tida como um passo essencial à humanização da assistência. O presente estudo descreve as organizações de saúde como comunidades lingüísticas com base no marco conceitual da teoria da ação comunicativa de Habermas. No contexto assistencial estão presentes quatro modelos comunicativos: objetivador-instrumental (modelo hegemônico), no qual elementos da interação são objetificados em vista de propósitos clínicos; dialógico com perspectivas estratégicas, no qual as conversações são utilizadas unilateralmente como ferramentas para obter acesso a estados subjetivos; adialógico-transmissional, no qual as trocas lingüísticas são substituídas por artefatos para transmissão de informações; comunicativo pleno, presente nos cuidados paliativos organizados ao redor da assistência domiciliar e dos cuidadores informais, enfatizando a interação entre equipes de saúde e familiares. Com base em tais premissas, consideramos os cuidados paliativos como modelos comunicativos emblemáticos porque fundamentados em times multidisciplinares dedicados à mútua colaboração transdisciplinar. Nesse cenário, a interação lingüística com pacientes e seus familiares serviria como base estruturante das equipes assistenciais