Designing Palliative Care Facilities to Better Support Patient and Family Care: A Staff Perspective

Objective: To contribute staff perspectives on the design of palliative care facilities to better align with the philosophy of palliative care, in support of patient, family, and staff well-being. Background: The receipt of palliative care differs from other inpatient experiences owing to its distinct philosophy of care, longer lengths of stay, a greater presence of family members, and more frequent end-of-life events. While research regarding the optimal design of palliative care environments recognizes these differences, this knowledge has been slow to exert change on the guidelines and procurement processes that determine the design solutions possible within these settings. Sustained research attention is required. Methods: An online survey, comprising a series of open-ended questions, elicited the perceptions of palliative care staff regarding the relationship between the physical environment and the distinct philosophy of palliative care. Results: Responses from 89 Australian-based palliative care professionals confirmed the high value that staff place on environments that offer privacy, homeliness, safety, and access to gardens to assist the delivery of optimum care. Conclusions: Our findings illustrate that the implications of privacy and homeliness extend far beyond the patient room and that homeliness is about more than an aesthetic of comfort. This highlights a broader capacity for design to better support the philosophy of palliative care. Importantly, the data reveal a key relationship between staff well-being and the environments in which they work; environments that are unable to match the quality of care that staff aspire to deliver can engender frustration and distress.

Visitor Restrictions, Palliative Care, and Epistemic Agency: A Qualitative Study of Nurses’ Relational Practice During the Coronavirus Pandemic

Efforts to curb spread of COVID-19 has led to restrictive visitor policies in healthcare, which disrupt social connection between patients and their families at end of life. We interviewed 17 Canadian nurses providing palliative care, to solicit their descriptions of, and responses to, ethical issues experienced as a result of COVID-19 related circumstances. Our analysis was inductive and scaffolded on notions of nurses’ moral agency, palliative care values, and our clinical practice in end-of-life care. Our findings reveal that while participants appreciated the need for pandemic measures, they found blanket policies separating patients and families to be antithetical to their philosophy of palliative care. In navigating this tension, nurses drew on the foundational values of their practice, engaging in ethical reasoning and action to integrate safety and humanity into their work. These findings underscore the epistemic agency of nurses and highlight the limits of a purely biomedical logic for guiding the nursing ethics of the pandemic response.

Palliative Care in Dysphagia and Dementia

Purpose The purpose of this clinical focus article is to discuss palliative care for patients with dysphagia who also have a comorbid condition of dementia. It reviews the nature of palliative care as encompassing important aspects of patient/resident choice and comfort, which are important regardless of the cognitive status of the patient or the terminal nature of the diagnosis. It provides a comparison of palliative care, hospice care, and rehabilitative care. It then discusses issues that are specific to dementia and dysphagia for patients who are approaching the end of life. Conclusion The philosophy of palliative care need not be limited to end-of-life cases in dysphagia management as considerations for comfort, and patient's wishes should always be part of care planning. Clinicians working with cognitively impaired patients at the end of life must be particularly sensitive to their communication efforts and be willing to work cooperatively with family members and other stakeholders in developing plans of care using shared decision making.

Effect of nationwide palliative care education program on lung cancer specialists.

e21715 Background: Although palliative care has owed an essential part of cancer treatment, palliative care specialists are still insufficient. Thus in Japan, the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education (PEACE) was launched in 2008 to provide primary palliative care education for all physicians engaged in cancer treatment. However, the effect of PEACE program on participants was uncertain. Methods: We conducted web-based surveys for physicians belonging to the Japan Lung Cancer Society and assessed outcomes of the PEACE program across three domains: knowledge, practices, and difficulties regarding palliative care by using the palliative care knowledge questionnaire for PEACE (PEACE-Q), Palliative Care self-reported Practice Scale (PCPS), and the Palliative Care Difficulties Scale (PCDS), respectively. All of these instruments were already validated in previous studies. Results: In February 2015, the survey was distributed to 5300 physicians and 923 of those surveyed including 455 respiratory physicians, 345 pulmonary surgeons, and 35 medical oncologist responded to all questionnaires. The result of PEACE-Q, PCPS, and PCDS (low score is better) were significantly superior in physicians who had participated in the PEACE program (n = 519) compared with non-participants (n = 404) (28.0 vs. 24.5, 71.8 vs. 67.1, and 34.4 vs. 36.9, respectively). The PEACE participants made significantly better scores than non-participants in all domains of PEACE-Q (philosophy of palliative care, cancer pain, side effects of opioids, dyspnea, nausea and vomiting, psychological distress, delirium, communication, and community-based palliative care) and PCPS (pain, dyspnea, delirium, dying-phase care, communication, and patient- and family-centered care), and 3 domains of PCDS (alleviation of symptoms, expert support, and communication with the patient and family). Conclusions: The PEACE program improved knowledge and practice of palliative care in lung cancer specialists in Japan.

CUIDADOS PALIATIVOS: VISÃO DE ENFERMEIROS DE UM HOSPITAL DE ENSINO

Objetivo: identificar se há a inserção do conceito e dos princípios dos Cuidados Paliativos definidos pela Organização Mundial de Saúde na atuação de enfermeiros de Unidades de Clínicas Médicas e da Comissão de Cuidados Paliativos e Controle da Dor de um Hospital- Escola da Região Sul do Brasil. Metodologia: pesquisa qualitativa com coleta de dados mediante entrevista semiestruturada com 22 enfermeiros, submetidas à técnica de análise de conteúdo. Resultados: o enfermeiro vincula os Cuidados Paliativos com o processo de morte dos pacientes. A comunicação limitada oblitera as condutas tomadas pelos membros da equipe. As pessoas com doença crônica são encaminhadas tardiamente, submetendo-se a ações reducionistas que não proporcionam qualidade de vida. Conclusões: os princípios da filosofia dos Cuidados Paliativos estão inseridos parcialmente na prática dos profissionais. Há demanda de formação acadêmica e em serviço.Descritores: Cuidados Paliativos, Doença Crônica, Cuidados de Enfermagem, Serviço Hospitalar de Enfermagem.PALLIATIVE CARE: NURSES VISION OF A TEACHING HOSPITALObjective: identify if there is the inclusion of the concept and the principles of palliative care as defined by the World Health Organization in the performance of Medical Clinical Unit nurses and the Committee on Palliative Care and Pain Management of a teaching hospital in southern Brazil. Methodology: qualitative research with data collection through semi-structured interviews with 22 nurses, submitted to the technique of content analysis. Results: the nurse links Palliative Care of death of patients process. The limited communication obliterates the steps taken by team members. People with chronic disease are referred late, undergoing reductionist actions that do not provide quality of life. Conclusion: the principles of the philosophy of palliative care are partially inserted in professional practice. There is demand for academic training and service.Descriptors: Palliative Care, Chronic Disease, Nursing Care, Nursing Service Hospital.CUIDADOS PALIATIVOS: VISIÓN DE ENFERMEROS DE UN HOSPITAL UNIVERSITARIOObjetivo: identificar si existe la inclusión del concepto y los principios de los cuidados paliativos según lo definido por la Organización Mundial de la Salud en el desempeño de médicos enfermeras Clinical Unit y el Comité de Cuidados Paliativos y Tratamiento del Dolor de un hospital universitario en el sur de Brasil. Metodología: la investigación cualitativa con la recolección de datos a través de entrevistas semiestructuradas con 22 enfermeras, sometidos a la técnica de análisis de contenido. Resultados: la enfermera une cuidados paliativos de la muerte del proceso de los pacientes. La comunicación limitada borra las medidas adoptadas por los miembros del equipo. Las personas con enfermedades crónicas se refieren tarde, sometidos a acciones reduccionistas que no proporcionan la calidad de vida. Conclusións: los principios de la filosofía de los cuidados paliativos se insertan parcialmente en la práctica profesional. Hay demanda de formación académica y de servicio.Descriptores: Cuidados Paliativos, Enfermedad Crónica, Atención de Enfermería, Servicio de Enfermería en Hospital.

The integration of a person-centered approach in palliative care

Objective:The philosophy underlying palliative care places the respect of patients and their autonomy at the heart of clinical practice. A study was conducted at a palliative care facility to document changes that occurred after the integration of a person-centered approach focusing on human freedom (which is linked to autonomy): the humanbecoming school of thought. It aimed to describe changes observed in the beliefs and practices of healthcare providers, the concept and respect of autonomy by healthcare providers, care and respect of autonomy experienced by patients' relatives, and consideration of patients' wishes through their documentation.Method:The method adopted consisted of a pre-project – process – post-project descriptive qualitative design and was inspired by teaching-learning and mentoring models. Data were collected from 51 healthcare providers and 10 relatives through semistructured interviews and from the medical records of 30 patients during the pre- and post-project phases. They were analyzed and compared at the end of the study. The process phase consisted of offering training sessions and mentoring, encouraging the involvement of healthcare providers, and cocreating integration and care tools.Results:While the analysis exposed some discrepancies with the language of the approach and differences between nurses and other healthcare providers, it revealed, above all, similarities in the changes observed between the different sources of data. The focus moved from being task-centered to being person-centered; the affirmation of the priority of respecting patients' choices, desires, and needs; a presence shifting from being available to true listening; the affirmation of following the ever-changing rhythm of the patient; and a notion of respect of autonomy now including the other.Significance of results:In line with the philosophy of palliative care, the project demonstrated that the integration of the humanbecoming approach can result in changes that contribute to the development of a more person-centered practice.

A discourse of silence: professional carers reasoning about death and dying in nursing homes

ABSTRACTNursing homes are a setting in which death and dying is common. How death and dying is articulated and the actions that take place in a nursing home constitute a discourse that guides the staff in their work. The aim of this study was to explore the discourse of death and dying in nursing homes from the perspective and understanding of the staff. The study draws on Foucault's discourse analysis. Data are from five focus-group discussions held with 28 staff of four different nursing homes in Sweden. The findings show that the discourse had three characteristics: (a) dying was silent and silenced, (b) emotions were pushed into the background, and (c) attentiveness to death arose after the moment of the elderly person's death. The structure of the discourse was characterised by a movement between two positions, avoiding and confronting death, the main focus being on avoidance. The articulation and practices of silence highlight a need to regard dying as a process that requires attention. One way to ensure appropriate attention could be to instil the philosophy of palliative care in nursing homes, including training and support for the staff in their work. The study demonstrates that nursing-home staff need more knowledge and support to enable them to feel that they do a good job.