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Background: Palliative rehabilitation amalgamates the principles of palliative care and rehabilitation to enhance patients' quality of life by optimizing physical function and maximizing autonomy despite advancing illness. Alongside providing non-pharmacological symptom management, it emphasizes personalized goal-setting tailored to individual needs. This case illustrates the transformative impact targeted physiotherapy interventions can have on patients' physical function, morale and motivation in spite of their expected deterioration. Case presentation: An 85-year-old male with angioimmunoblastic T cell lymphoma was admitted to home hospice care. He was referred for physiotherapy to optimize his function and mobility despite his short prognosis. A conversation guide was used throughout the duration of therapy to identify personal goals, prescribe and review the use of appropriate interventions, and discuss future therapeutic plans. Within a month he achieved his functional goals, experienced reduced physical dependency, and had increased satisfaction in his ability to participate more actively in self-care. This also resulted in significant improvements in his confidence, mood, and overall well-being. Engaging the patient actively in his care and management journey provided him with significant motivation and hope. Conclusion: The case study highlights the vital role of physiotherapists in facilitating transparent communication among patients, healthcare providers, and caregivers throughout palliative rehabilitation. Through open dialogue and utilizing conversation guides, physiotherapists help understand patient preferences, goals, and motivation. This patient-centred approach ensures that therapeutic interventions align with individual needs, enhancing overall patient care and the provision of holistic palliative care. [ABSTRACT FROM AUTHOR]

Objective: Communication about patients' values, goals, and prognosis in serious illness (serious illness communication) is a cornerstone of person-centered care yet difficult to implement in practice. As part of Serious Illness Care Program implementation in five health systems, we studied the clinical culture-related factors that supported or impeded improvement in serious illness conversations. Methods: Qualitative analysis of semi-structured interviews of clinical leaders, implementation teams, and frontline champions. Results: We completed 30 interviews across palliative care, oncology, primary care, and hospital medicine. Participants identified four culture-related domains that influenced serious illness communication improvement: (1) clinical paradigms; (2) interprofessional empowerment; (3) perceived conversation impact; (4) practice norms. Changes in clinicians' beliefs, attitudes, and behaviors in these domains supported values and goals conversations, including: shifting paradigms about serious illness communication from 'end-of-life planning' to 'knowing and honoring what matters most to patients;' improvements in psychological safety that empowered advanced practice clinicians, nurses and social workers to take expanded roles; experiencing benefits of earlier values and goals conversations; shifting from avoidant norms to integration norms in which earlier serious illness discussions became part of routine processes. Culture-related inhibitors included: beliefs that conversations are about dying or withdrawing care; attitudes that serious illness communication is the physician's job; discomfort managing emotions; lack of reliable processes. Conclusions: Aspects of clinical culture, such as paradigms about serious illness communication and inter-professional empowerment, are linked to successful adoption of serious illness communication. Further research is warranted to identify effective strategies to enhance clinical culture and drive clinician practice change. [ABSTRACT FROM AUTHOR]

Background: There is growing evidence that conversations between healthcare professionals and patients with serious illness can improve the quality of end-of-life cancer care. Yet, there is lack of insight into how different healthcare professions collaborate to deliver serious illness communication, as well as patients' and caregivers' perceptions of this collaboration between the nurse and physician. This study explores the interdisciplinary collaboration between nurses and physicians in serious illness conversations with patients diagnosed with multiple myeloma and their caregivers. Methods: Eleven dyadic interviews were conducted with 22 patients and caregivers, and two focus group interviews involving four nurses and the other with four physicians. Data analysis and reporting were conducted using reflexive thematic analysis within phenomenological epistemology. Results: The interdisciplinary collaboration was characterized by three main themes: (1) Importance of relationships, (2) Complementary perspectives, and (3) The common goal. Conclusion: This study highlights the importance of interdisciplinarity in serious illness conversations as it enhances the use of existential and descriptive language when addressing medical, holistic, and existential issues. The use of broader language also reflects that interdisciplinary interaction strengthens the expertise of each professional involved in patient care. Through interdisciplinary collaboration, the preferences, hopes, and values of the patient and caregiver can be integrated into the treatment plan, which is key in providing the delivery of optimal care. To promote cohesive and coordinated collaboration, organizational changes are recommended such as supporting continuity in patient–healthcare professional relationships, providing interdisciplinary training, and allocating time for pre-conversation preparation and post-conversation debriefing. [ABSTRACT FROM AUTHOR]

Background: Uncertainty has been associated with distress and poorer quality of life in patients with advanced cancer. Prior studies have focused on prognostic uncertainty; little is known about other types of uncertainty that patients and family members experience when discussing goals of care. Understanding the types of uncertainty expressed and differences between Black and White patients can inform the development of uncertainty management interventions. Methods: This study sought to characterize the types of uncertainty expressed by Black and White patients and family members within the context of information needs during inpatient goals-of-care discussions. We performed a secondary analysis of transcripts from 62 recorded goals-of-care discussions that occurred between 2012 and 2014 at an urban, academic medical center in the United States. We applied an adapted taxonomy of uncertainty to data coded as describing information needs and used an inductive qualitative analysis method to analyze the discussions. We report the types of uncertainty expressed in these discussions. Results: Fifty discussions included patient or family expressions of information needs. Of these, 40 discussions (n=16 Black and n=24 White) included statements of uncertainty. Black and White patients and families most frequently expressed uncertainty related to processes and structures of care (system-centered uncertainty) and to treatment (scientific uncertainty). Statements of prognostic uncertainty focused on quantitative information among Whites and on qualitative information and expectations for the future among Blacks. Conclusions: Black and White patients and families frequently expressed system-centered uncertainty, suggesting this may be an important target for intervention. Addressing other sources of uncertainty, such as prognostic uncertainty, may need more tailored approaches. [ABSTRACT FROM AUTHOR]

Background: Postgraduate medical trainees are not well prepared difficult conversations about goals of care with patients and families in the acute care clinical setting. While contextual nuances within the workplace can impact communication, research to date has largely focused on individual communication skills. Our objective was to explore contextual factors that influence conversations between trainees and patients/families about goals of care in the acute care setting. Methods: We conducted an exploratory qualitative study involving five focus groups with Internal Medicine trainees (n = 20) and a series of interviews with clinical faculty (n = 11) within a single Canadian centre. Thematic framework analysis was applied to categorize the data and identify themes and subthemes. Results: Challenges and factors enabling goals of care conversations emerged within individual, interpersonal and system dimensions. Challenges included inadequate preparation for these conversations, disconnection between trainees, faculty and patients, policies around documentation, the structure of postgraduate medical education, and resource limitations; these challenges led to missed opportunities, uncertainty and emotional distress. Enabling factors were awareness of the importance of goals of care conversations, support in these discussions, collaboration with colleagues, and educational initiatives enabling skill development; these factors have resulted in learning, appreciation, and an established foundation for future educational initiatives. Conclusions: Contextual factors impact how postgraduate medical trainees communicate with patients/families about goals of care. Attention to individual, interpersonal and system-related factors will be important in designing educational programs that help trainees develop the capacities needed for challenging conversations. [ABSTRACT FROM AUTHOR]

Background: Communication gaps impact the quality of patient care. Previous research has focused on communication barriers rather than seeking solutions. Our aim was to identify strategies for effective communication and decision-making about goals of care for medical interventions in serious illness, from the perspectives of hospital-based healthcare providers. Methods: A cross-sectional survey composed of closed- and open-ended questions about goals of care communication and decision-making was administered to healthcare providers in 13 centres in six Canadian provinces. We analyzed a portion of the open-ended survey questions, specifically (1) suggestions for overcoming barriers encountered in discussing goals of care, and (2) currently effective practices. Thematic content analysis was used to analyze responses to the open-ended questions. Results: Of the 1,256 respondents to the larger survey, 468 responded to the open-ended questions (37 %), including 272 of 512 nurses (53 %), 153 of 484 internal medicine trainees (32 %), and 43 of 260 attending physicians (17 %). Responses to each of the two questions were similar, generating a common set of themes and subthemes. Effective strategies and ideas for improving communication and decision-making about goals of care clustered under five themes: patient and family factors, communication between healthcare providers and patients, interprofessional collaboration, education, and resources. Subthemes highlighted core elements of shared decision-making. Conclusions: Translating our findings into multifaceted interventions that consider patient and family factors, address knowledge gaps, optimize resource utilization, and facilitate communication and collaboration between patients, families and healthcare providers may improve communication and decision-making about goals of care. [ABSTRACT FROM AUTHOR]

Background: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling. Discussion: Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. Summary: The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process. [ABSTRACT FROM AUTHOR]

Background: In Germany, patients suffering from life-limiting conditions are eligible for specialized outpatient palliative care (SOPC). Evaluation of the quality of this service lacks currently integration of patient-relevant outcomes. There is also no scientific consensus how to prove quality of care in the special context of SOPC adequately. Existing quality reports are primarily based on descriptive structural data which do not allow for estimation of process quality or result quality. The ELSAH study ('Evaluation of Specialized Outpatient Palliative Care in the German state of Hesse') aims to choose - or, if necessary, to adopt - to evaluate and to implement a suit of measures to assess, evaluate and monitor the quality of specialized, home-based palliative care. Methods: All 22 SOPC teams providing their services in the state of Hesse, Germany, participate in the ELSAH study. The study is divided in two phases: a preparation phase and a main study phase. Based on the findings of the preparation phase we have chosen a preliminary set of instruments including the Integrated Palliative Outcome Scale, Views on Care, Zarit Burden Interview, Phase of Illness, Goal Attainment Scaling, Eastern Cooperative Oncology Group Performance Status, Consumer Quality Indices Palliative Care and Sense of Security in Care. During the main study phase, we will use a mixed-methods approach to evaluate the instruments' psychometric properties (reliability, validity, feasibility and practicability), to identify barriers, facilitators and limitations of their routine use and to explore how their use affects the care within the SOPC setting. Discussion: At the end of this study, an outcome- and patient-centered, validated measurement approach should be provided, adapted for standardized evaluations in SOPC across patient groups, palliative care services and regions nationwide. The standardized application of instruments should allow for making valid statements and comparisons of health care quality in SOPC based on process- and outcome-evaluation rather than relying on structural data only. Moreover, the instruments might directly influence the care of patients in palliative situations. Trial registration: German Clinical Trials Register (DRKS-ID: DRKS00012421). [ABSTRACT FROM AUTHOR]

Background: In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care. Methods: Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals. Results: Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568–0.995) and discriminant (0.472–0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained. Conclusion: This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer. [ABSTRACT FROM AUTHOR]