Understanding Nonpharmacologic Palliative Care for People With Serious COPD: The Individual and Organizational Perspective.

TOPIC IMPORTANCE: This narrative review emphasizes the growing interest in palliative care for people with serious lung diseases such as COPD. It reflects on recent publications from the American Thoracic Society, the World Health Organization, and European Respiratory Society, with a focus on nonpharmacologic palliative care for people with COPD from both the health care professional and organizational perspective. REVIEW FINDINGS: The concept of palliative care has changed over time and is now seen as applicable throughout the entire disease trajectory according to need, in conjunction with any disease-modifying therapies. Palliative care should pay attention to the needs of the person with COPD as well as the informal caregiver. Timely integration of palliative care with disease-modifying treatment requires assessment of needs at the individual level as well as organizational changes. High-quality communication, including advance care planning, is a cornerstone of palliative care. SUMMARY: Therefore, services should be based on the understanding that palliative care is not only specific standardized actions and treatments, but rather a holistic approach that includes compassionate communication, treatment, and care addressing the patient and informal and formal caregivers. Living with and dying of COPD is much more than objective measurements. It is the sum of relationships with others and the experience of living in the best possible harmony with one's own values and hopes, despite having a serious illness.

Reliability and Validity of the New Urgency Classification Model for Acute Medical Care in Dutch Nursing Home Setting.

OBJECTIVE: To validate an Urgency Classification Model developed for telephone triage in Dutch nursing homes. DESIGN: Retrospective observational study. SETTING AND PARTICIPANTS: Retrospective analysis of triage data of nursing home residents in a medical service organization, active in 40 nursing homes across the Netherlands. METHODS: An Urgency Classification Model for nursing home care was developed through a collaborative cocreation session by modifying existing acute medical care delivery models. All inquiries to central triage personnel during regular working hours between April 1 and April 30, 2022, were retrospectively categorized according to the new Urgency Classification Model ("urgency," consisting of 6 levels from U0 to U5; and "goals of care and treatment limitations," consisting of 4 options) by 2 independent physicians to evaluate the reliability using Cohen's kappa. To ascertain validity, the categorized data were juxtaposed with the executed treatment plan as documented in the patient records. RESULTS: Of 387 inquiries, consensus between assessors using the Urgency Classification Model was reached upon initial independent classification of urgency in 77.0% (n = 298, Cohen's kappa 0.654) of cases and in 77.3% (n = 299, Cohen's kappa 0.649) of goals of care and treatment limitations classification, representing substantial interrater reliability. A strong positive correlation was found between the urgency identified through the Urgency Classification Model and the observed urgency in the executed treatment, rs = 0.662, P < .001; the same urgency was given in 71.5% (n = 276) of all inquiries. Overtriage (meaning the model classified the inquiry as more urgent than the executed treatment plan) occurred in 9.8% (n = 38) and undertriage in 18.7% (n = 72). CONCLUSION AND IMPLICATIONS: The new Urgency Classification Model is a valid and reliable classification tool for implementation within its intended target population. Universal and comprehensive implementation is expected to lead to more appropriate care delivery, while realizing integration with the acute medical care frameworks already in place.

End-of-life preferences of people with advanced chronic obstructive pulmonary disease.

OBJECTIVES: To identify end-of-life preferences of people with advanced chronic obstructive pulmonary disease (COPD) and to compare characteristics between those who wish to discuss the end-of-life and those who do not. METHODS: An analysis of the baseline data of a randomised controlled trial was performed including people with COPD GOLD stages III-IV or former quadrant D with modified Medical Research Council questionnaire grade ≥2, after hospital discharge following an exacerbation. Participants were interviewed using the End-of-Life Preferences Interview. RESULTS: A total of 165 individuals (53% men; 68±9 years old; 55% care dependent) were included. Most participants wished to take part in shared decision-making (78%), to be informed about a short life expectancy (82%), to discuss the end-of-life (82%), to have loved ones around at death (87%) and to choose when to die (70%). They also reported accepting opioids (74%). Preferences for who to provide physical care, the place, consciousness and atmosphere at death as well as life-sustaining treatments were heterogeneous. Participants who wanted to discuss the end-of-life had a significantly higher educational level (p=0.030) and worse health status than participants who did not (p=0.007). CONCLUSIONS: End-of-life preferences of people with advanced COPD were heterogeneous, however, most wished to discuss it, especially those with higher educational level and worse health status. TRIAL REGISTRATION NUMBER: NTR3940.

Fundamentals of end-of-life communication as part of advance care planning for older people: An interview study with nursing staff.

This exploratory interview study investigated nursing staff members' perspectives on the fundamentals of end-of-life communication with older people as part of advance care planning in home care, nursing home, and hospital settings. Separate semi-structured interviews were conducted with 17 nursing staff members about their experiences, opinions, and preferences before, during, and after end-of-life conversations. Overall themes clustering the fundamentals include preconditions such as feeling comfortable talking about the end of life and creating space for open communication. Fundamentals related to the actual conversation-such as using senses and applying associative communication techniques (e.g., using understandable language), following conversation phases, and being aware of interprofessional collaboration-were also considered important. This study emphasizes the importance of moving along with the older person as well as connecting, adapting, and letting go of control over the conversation's outcome. Many fundamentals can be traced back to the basics of nursing and the humanity of conversation.

Symptom burden and its associations with clinical characteristics in patients with COPD: a clustering approach.

Background: Symptom burden in patients with COPD is often under-recognised. In this cross-sectional analysis, we aimed to study the severity of a variety of (non-)respiratory symptoms in patients with and without COPD and to explore the associations between clusters based on symptom severity and other clinical characteristics. Methods: Characteristics were assessed in 538 patients with COPD from primary, secondary and tertiary care and 116 non-COPD participants. The severity of 20 symptoms was measured using a visual analogue scale (VAS), ranging from 0 mm (no symptom) to 100 mm (maximum severity). K-means cluster analysis was applied to symptom severity in the patient sample only. Results: People with COPD were comparable with non-COPD participants in terms of gender (58% versus 55% male, p=0.132) and age (64±9 years versus 63±6 years, p=0.552) and had a reduced forced expiratory volume in 1 s (57±23% predicted versus 111±17% predicted, p<0.001). The COPD group had higher VAS scores for most symptoms (p<0.05). The most severe symptoms in patients with COPD were dyspnoea, fatigue and muscle weakness while non-COPD participants mainly experienced insomnia and micturition. Three clusters were identified in the patient sample. Health status and care dependency differed between all clusters, while functional mobility, exacerbation history and lung function differed between cluster 1 and the other two clusters (p<0.05). Conclusions: People with COPD report a high burden of respiratory as well as non-respiratory symptoms. Cluster analysis demonstrated a co-occurrence of different levels of symptom severity, highlighting the heterogeneity of symptoms experience. Identifying clusters of patients with shared symptom experiences will help us to understand the impact of the disease and define integrated, multidimensional treatment strategies.

Motivation and preferences for learning of patients with COPD or asthma and their significant others in pulmonary rehabilitation: a qualitative study.

Introduction: An in-depth understanding of educational needs from the perspective of learners in pulmonary rehabilitation is lacking. To improve learning in pulmonary rehabilitation, understanding of factors that induce or enhance intrinsic motivation in both patients and their significant others is needed. Therefore, this study aims to gain in-depth understanding of what motivates patients with COPD or asthma referred for pulmonary rehabilitation and their significant others to learn and what their preferences are for education. Methods: For this qualitative study, a sample was taken from a previous quantitative study. Data was collected through one-time face-to-face semi-structured interviews. The interviews were transcribed and independently analysed by two researchers using thematic analyses. Results: Twelve patients and four significant others (56% female; age: 63±11 years) were interviewed. Participants expressed a variety of information needs and learning preferences. Subthemes that emerged within the theme of motivation for learning were: 1) curiosity, such as knowledge gaps and hope for new information; and 2) values and goals, such as own health, caring for loved ones and spending time with family. Discussion: To enhance intrinsic motivation for learning within pulmonary rehabilitation, autonomy of individuals should be supported by offering several learning topics and education adapted to preferences, while curiosity should be fostered by targeting information needs. Moreover, health education programmes should match with the personal values and goals of individuals, such as own health, caring for loved ones and spending time with family.

Desired dementia care towards end of life: Development and experiences of implementing a new approach to improve person-centred dementia care.

AIMS: To describe the co-creation of the 'Desired Dementia Care Towards End of Life' (DEDICATED) approach to improve person-centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation. METHODS: A needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co-created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi-structured interviews with actively engaged professionals were analysed using Conventional Content Analysis. RESULTS: The needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co-creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones. CONCLUSION: Co-creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person-centred palliative dementia care. IMPACT STATEMENT: This study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: The developed approach can improve person-centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones. REPORTING METHOD: This study used the Consolidated Criteria for Reporting Qualitative Research. PATIENT OF PUBLIC CONTRIBUTION: No patient or public contribution.

Effects of Asthma on the Performance of Activities of Daily Living: A Retrospective Study.

The study aim was to identify the most problematic self--reported activities of daily living (ADLs). In a retrospective study, 1935 problematic ADLs were reported by 538 clients with 95% experiencing two or more problematic ADLs. Problematic ADLs were assessed by occupational therapists using the Canadian Occupational Performance Measure with walking (67%), household activities (41%), and climbing the stairs (41%) identified as the most prevalent problematic ADLs. Significant but weak associations were found between clinical determinants (e.g. physical, psychosocial) and problematic ADLs. The wide variety of problematic ADLs and the absence of a strong association with clinical determinants emphasizes the need for using individualized interview-based performance measures in clients with asthma.

Association of inadequate social support and clinical outcomes in patients with chronic obstructive pulmonary disease - A cross-sectional study.

INTRODUCTION: In patients with chronic obstructive pulmonary disease (COPD), loneliness and social isolation are associated with increased morbidity and decreased mobility, self-reliance, and health-related quality of life. Social support has been shown to improve these outcomes. AIMS: This cross-sectional study aimed to investigate the level of experienced social support and the clinical outcomes associated with inadequate social support among patients with COPD with a resident loved one. METHODS: Level of social support was assessed with the Medical Outcomes Study - Social Support Survey (MOS-SSS) in patients with COPD with a resident loved one. Patients were sub-grouped into adequate or inadequate social support. Multiple clinical outcomes were assessed, including lung function, degree of dyspnoea, health status, symptoms of anxiety and depression, the degree of care dependency, functional status, and mobility. RESULTS: The study included 191 Dutch patients with COPD (53.4% men, age: 65.6 ± 8.9 years, FEV1: 47.3 ± 17.7% predicted). Eighteen percent of the patients reported inadequate social support. Patients with inadequate social support reported a significantly symptom severity of COPD (p = 0.004), a higher care dependency level (p = 0.04) and a higher level of depression (p = 0.004) compared to patients with adequate social support. Other traits were comparable for both groups. CONCLUSION: Patients with COPD with a resident loved one who perceive an inadequate level of social support are more likely to report a higher impact of COPD, a higher care dependency and symptoms of depression. Other characteristics are comparable with patients who perceive adequate social support.

Integrating palliative care education in pulmonary rehabilitation: a randomized controlled study protocol.

BACKGROUND: Palliative care addresses multiple unmet needs of people with chronic obstructive pulmonary disease (COPD) or interstitial lung diseases (ILD) and their family and/or friend caregivers, but it remains highly underused. Pulmonary rehabilitation (PR) may provide a key opportunity to introduce palliative care. We aim to explore the effects of palliative care education as part of PR on knowledge about this field in people with COPD or ILD and their family and/or friend caregivers. METHODS: A randomized controlled study will compare PR with palliative care education (experimental) with traditional PR (control) in people with COPD or ILD and their family and/or friend caregivers. Family and/or friend caregivers will be invited to take part in education and psychosocial support sessions. In addition to the usual educational content, the experimental group will have a session on palliative care, a "Peer-to-peer session", two "Get-apart sessions" and online sessions. The "Peer-to-peer session" and the "Get-apart sessions" will be discussions about topics suggested by participants. The "Get-apart sessions" will be dedicated to people with COPD or ILD apart from their family and/or friend caregivers and vice versa. The online sessions will be zoom meetings to discuss any health-related issues raised by participants, at a flexible time. A mixed-methods approach will be used to evaluate the outcomes. The primary outcome will be knowledge about palliative care. Secondary outcomes will include attitude towards palliative care referral, symptoms, disease impact, health-related quality of life, needs, knowledge about the disease, burden of providing care, adherence, adverse events and referral to a specialist palliative care team. Quantitative and qualitative data will be collected at baseline and end of PR. At 6-months post-PR, only patient-reported outcomes will be collected. For the primary outcome, time*group interaction will be analyzed with mixed analysis of variance. DISCUSSION: This study aims to demonstrate the impact of integrating palliative care into the PR education program. TRIAL REGISTRATION: The trial was registered in the ClinicalTrials.gov U.S. National Library of Medicine, on 1st September, 2023 (NCT06046547).

Impact of post-COVID-19 condition on health status and activities of daily living: the PRIME post-COVID study.

OBJECTIVE: To assess health and activities of daily living (ADL) in SARS-CoV-2-positive adults with and without post-COVID-19 condition (PCC) and compare this with negative tested individuals. Furthermore, different PCC case definitions were compared with SARS-CoV-2-negative individuals. METHODS: All adults tested PCR positive for SARS-CoV-2 at the Public Health Service South Limburg (Netherlands) between June 2020 and November 2021 (n=41 780) and matched PCR negative individuals (2:1, on age, sex, year-quarter test, municipality; n=19 875) were invited by email. Health (five-level EuroQol five-dimension (EQ5D) index and EuroQol visual analogue scale (EQVAS)) and ADL impairment were assessed. PCC classification was done using the WHO case definition and five other common definitions. RESULTS: In total, 8409 individuals (6381 SARS-CoV-2 positive; 53±15 years; 57% female; 9 (7-11) months since test) were included. 39.4% of positives had PCC by the WHO case definition (EQVAS: 71±20; EQ5D index: 0.800±0.191; ADL impairment: 30 (10-70)%) and perceived worse health and more ADL impairment than negatives, that is, difference of -8.50 points (95% CI -9.71 to -7.29; p<0.001) for EQVAS, which decreased by 1.49 points (95% CI 0.86 to 2.12; p<0.001) in individuals with PCC for each comorbidity present, and differences of -0.065 points (95% CI -0.074 to -0.056; p<0.001) for EQ5D index, and +16.72% (95% CI 15.01 to 18.43; p<0.001) for ADL impairment. Health and ADL impairment were similar in negatives and positives without PCC. Replacing the WHO case definition with other PCC definitions yielded comparable results. CONCLUSIONS: Individuals with PCC have substantially worse health and more ADL impairment than negative controls, irrespective of the case definition. Authorities should inform the public about the associated burden of PCC and enable adequate support.

Development of the conversation tool "I-HARP for COPD" for early identification of palliative care needs in patients with chronic obstructive pulmonary disease.

OBJECTIVES: This study aimed to develop the conversation tool "I-HARP for COPD" for timely identification of palliative care needs in Dutch patients with chronic obstructive pulmonary disease (COPD). METHODS: An iterative and participatory research design was used to develop "I-HARP for COPD". There were 2 phases to the development of "I-HARP for COPD": content development and testing. A review of current literature, parallel focus groups, and a questionnaire among experts were used to develop the content of "I-HARP for COPD". "I-HARP for COPD" was then assessed by health-care professionals (HCPs) in clinical practice for understanding, difficulty, and relevance. RESULTS: A total of 46 HCPs, 6 patients, 1 informal caregiver, and 1 bereaved informal caregiver participated in this study. "I-HARP for COPD" included 14 screening questions, additional in-depth questions, and recommendations to address identified needs. The content of "I-HARP for COPD" was accepted by 86.2% of the HCPs. SIGNIFICANCE OF RESULTS: "I-HARP for COPD" was successfully developed for providing guidance in the palliative care of Dutch patients with COPD and their informal caregivers. By supporting HCPs with "I-HARP for COPD", they are better able to timely identify and direct palliative care needs.

Fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers: a scoping review.

BACKGROUND: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff. OBJECTIVE: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver. DESIGN: Scoping review. METHODS: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review. RESULTS: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills. CONCLUSIONS: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.

Symptoms and quality of life before, during, and after a SARS-CoV-2 PCR positive or negative test: data from Lifelines.

This study evaluates to what extent symptoms are present before, during, and after a positive SARS-CoV-2 polymerase chain reaction (PCR) test, and to evaluate how the symptom burden and quality of Life (QoL) compares to those with a negative PCR test. Participants from the Dutch Lifelines COVID-19 Cohort Study filled-out as of March 2020 weekly, later bi-weekly and monthly, questions about demographics, COVID-19 diagnosis and severity, QoL, and symptoms. The study population included those with one positive or negative PCR test who filled out two questionnaires before and after the test, resulting in 996 SARS-CoV-2 PCR positive and 3978 negative participants. Nearly all symptoms were more often reported after a positive test versus the period before the test (p < 0.05), except fever. A higher symptom prevalence after versus before a test was also found for nearly all symptoms in negatives (p < 0.05). Before the test, symptoms were already partly present and reporting of nearly all symptoms before did not differ between positives and negatives (p > 0.05). QoL decreased around the test for positives and negatives, with a larger deterioration for positives. Not all symptoms after a positive SARS-CoV-2 PCR test might be attributable to the infection and symptoms were also common in negatives.