The experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods study.

BACKGROUND: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time. METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio. RESULTS: Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included "Living one day at the time," "Having inner force/strength," and "Maintaining good health." Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one. CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.

Revie ⊕: Impact of a resource-based life review intervention on patients with advanced cancer: A waitlist controlled trial.

PURPOSE: Life review interventions aim to support individuals facing an incurable disease accompanied by existential concerns and health-related challenges. Based on encouraging feasibility results, this study assessed the effects of Revie ⊕ life review intervention on the self-esteem of patients with advanced cancer, and the effects on well-being, post-traumatic growth, life satisfaction, symptom burden and interaction with nurses. METHOD: The study consisted of a two-arm parallel-group, waitlist-controlled trial (WCT) in the oncology division of a Swiss-French University Hospital. Revie ⊕ was composed of nurse-led meeting with the patient to address and document significant life events using a strengths-focused approach and targeting the life project. RESULTS: Due to Covid-19 pandemic, adjustments were made regarding study duration and participant's allocation: Fifty-eight patients received Revie ⊕, 39 completed all the measurements. Self-esteem was high at baseline and maintained stability over time. The social well-being decreased in the intervention group before-after Revie ⊕ (-1.7 (3.9), p = 0.044) while emotional and functional well-being showed stability. The intensity of symptoms decreased in the intervention group before-after Revie ⊕: 4.9 (9.4), p = 0.020. CONCLUSIONS: This study suggests that patients living with an advanced cancer and who received Revie ⊕ intervention may have maintained their self-esteem high over time. Observed results are promising, particularly considering the influence of the pandemic. Nevertheless, these findings do not allow us to draw definitive conclusions regarding the efficacy of the intervention on self-esteem. WCT seems not to be the appropriate design to highlight the added value of Revie ⊕ for this particularly vulnerable population. CLINICAL TRIAL REGISTRATION NUMBER: NCT04254926.

[Early palliative care for the management of breathlessness in pulmonary diseases]. / Prise en charge palliative précoce de la dyspnée dans les maladies pulmonaires.

Dyspnoea in chronic respiratory disease is a very frequent symptom with a significant impact on quality of life (QoL). The aim of palliative care is to improve and maintain the QoL of patients with life-threatening diseases and its early implementation is now recommended in many evolving pulmonary diseases. The effectiveness of symptomatic treatments to relieve refractory breathlessness (morphine, oxygen supply, hypnosis, pulmonary rehabilitation) is often limited. These measures are more effective if offered early in the holistic management of the patient. This article illustrates and describes, with the help of a clinical situation, these treatments options and the collaborations established between the palliative care and pneumology divisions.

La dyspnée en lien avec une maladie respiratoire chronique est un symptôme très fréquent avec un impact important sur la qualité de vie (QoL). Les soins palliatifs ont pour objectif d'améliorer la QoL et les symptômes des personnes atteintes de maladies potentiellement mortelles et sont recommandés dans la prise en charge usuelle de nombreuses pathologies pulmonaires évolutives. Les traitements symptomatiques de la dyspnée réfractaire (morphine, oxygène, hypnose, réadaptation respiratoire) ont souvent un effet limité. Ces mesures sont d'autant plus efficaces si elles sont proposées précocement dans la prise en charge holistique du patient. Cet article illustre et décrit, à partir d'une situation clinique, ces modalités thérapeutiques et les collaborations établies entre les soins palliatifs et la pneumologie.

Existential suffering as a motive for assisted suicide: Difficulties, acceptability, management and roles from the perspectives of Swiss professionals.

BACKGROUND: Existential suffering is often a part of the requests for assisted suicide (AS). Its definitions have gained in clarity recently and refer to a distress arising from an inner realization that life has lost its meaning. There is however a lack of consensus on how to manage existential suffering, especially in a country where AS is legal and little is known about the difficulties faced by professionals confronted with these situations. OBJECTIVES: To explore the perspectives of Swiss professionals involved in end-of-life care and AS on the management of existential suffering when it is part of AS requests, taking into account the question of roles, as well as on the difficulties they encounter along the way and their views on the acceptability of existential suffering as a motive for AS. METHODS: A qualitative study based on face-to-face interviews was performed among twenty-five participants from the fields of palliative and primary care as well as from EXIT right-to-die organization. A semi-structured interview guide exploring four themes was used. Elements from the grounded theory approach were applied. RESULTS: Almost all participants reported experiencing difficulties when facing existential suffering. Opinions regarding the acceptability of existential suffering in accessing AS were divided. Concerning its management, participants referred to the notion of being present, showing respect, seeking to understand the causes of suffering, helping give meaning, working together, psychological support, spiritual support, relieving physical symptoms and palliative sedation. CONCLUSION: This study offers a unique opportunity to reflect on what are desirable responses to existential suffering when it is part of AS requests. Existential suffering is plural and implies a multiplicity of responses as well. These situations remain however difficult and controversial according to Swiss professionals. Clinicians' education should further address these issues and give professionals the tools to better take care of these people.

Perceptions of healthcare professional about the "PACE Steps to Success" palliative care program for long-term care: A qualitative study in Switzerland.

AIM: This study aimed to examine the healthcare professionals' perceptions after implementing the "PACE Steps to Success" program in the French-speaking part of Switzerland. DESIGN: A qualitative descriptive study. METHODS: Thematic analysis of semi-structured face-to-face and group interviews with health professionals, PACE coordinators, and managers purposely invited in the four long-term home facilities that had previously participated in the PACE cluster randomized clinical trial intervention group. RESULTS: The PACE program implementation has improved communication with residents regarding end-of-life issues and helped identify patients' needs. The introduction of codified tools can complete internal tools and support decision-making. In addition, the training has promoted inter-professional collaboration, particularly in the case of care assistants, by defining each profession's specific responsibilities in providing care for older adults.

Long-Term Dexmedetomidine Use and Safety Profile in Palliative Care: A Case Report.

There is a lack of report of conscious sedation used as a last resort therapy for alleviating severe symptoms. To achieve this goal, dexmedetomidine appears to be a promising option. We report a case of successful two-month long treatment of intravenous (IV) dexmedetomidine added to hydromorphone for intractable cancer pain, restlessness, severe sleep disorder, anxiety, and craving symptoms in a 40-year-old man with active polysubstance use, receiving escalating doses of opioids for intractable abdominal cancer pain together with benzodiazepines. Under dexmedetomidine infusion at 1.2 µg/kg/hour, his symptoms markedly decreased. He could sleep at night and find respite during the day while continuing walking, eating, and other activities. Long-term conscious sedation with IV dexmedetomidine was well tolerated. We did not observe anxiety or agitation rebound during short periods of discontinuation of the infusion. Neither side effects nor tolerance were observed over time. Further research is needed to investigate the indications for conscious sedation and analgesia with dexmedetomidine in palliative patients with a prognosis that is longer than few weeks or uncertain.

Scope of treatment and clinical-decision making in the older patient with COVID-19 infection, a European perspective.

PURPOSE: Older patients were particularly vulnerable to severe COVID-19 disease resulting in high in-hospital mortality rates during the two first waves. The aims of this study were to better characterize the management of older people presenting with COVID-19 in European hospitals and to identify national guidelines on hospital admission and ICU admission for this population. METHODS: Online survey based on a vignette of a frail older patient with Covid-19 distributed by e-mail to all members of the European Geriatric Medicine Society. The survey contained questions regarding the treatment of the vignette patient as well as general questions regarding available services. Additionally, questions on national policies and differences between the first and second wave of the pandemic were asked. RESULTS: Survey of 282 respondents from 28 different countries was analyzed. Responses on treatment of the patient in the vignette were similar from respondents across the 28 countries. 247 respondents (87%) would admit the patient to the hospital, in most cases to a geriatric COVID-19 ward (78%). Cardiopulmonary resuscitation was found medically inappropriate by 85% of respondents, intubation and mechanical ventilation by 91% of respondents, admission to the ICU by 82%, and ExtraCorpular Membrane Oxygenation (ECMO) by 93%. Sixty percent of respondents indicated they would consult with a palliative care specialist, 56% would seek the help of a spiritual counsellor. National guidelines on admission criteria of geriatric patients to the hospital existed in 22 different European countries. CONCLUSION: This pandemic has fostered the collaboration between geriatricians and palliative care specialists to improve the care for older patients with a severe disease and often an uncertain prognosis.

Patient-Related Barriers to the Prescription of Cannabinoid-Based Medicines in Palliative Care: A Qualitative Approach.

Background: A minority of palliative care patients benefit from prescribed cannabinoid-based medicines (CBMs). Objective: The objective of this study was to explore the perceptions, expectations, and experiences of CBM usage among palliative care patients and to evaluate whether and how they may constitute an obstacle to prescription. Design: This is a qualitative study involving semistructured in-depth interviews with 10 patients hospitalized in a palliative care unit in Geneva, Switzerland. The data were analyzed using the interpretative phenomenological analysis method. Results: Semistructured interviews were conducted on 10 patients (average age of 73.3 years), mainly with advanced cancer. Most patients favored CBM use in palliative care and distinguished it from recreational use. Seven themes were identified from patients' perceptions, experiences, and expectations during the interviews: right time to begin CBMs, off-label use, information about side effects, lack of a safe medical framework, costs, relatives, and social acceptance of CBMs. Conclusion: The obstacles described by the patients seem to be surmountable with specific measures at the clinical level. We suggest training health professionals in a palliative care setting, especially in explaining the effects and side effects. CBMs will undoubtedly play a more significant role in palliative care medicine in the years to come.

Experience of hope in adult patients with advanced chronic disease and their informal caregivers: a qualitative systematic review protocol.

OBJECTIVE: This systematic review will evaluate the experience of hope in adult patients with advanced chronic diseases other than cancer, transitioning toward end-of-life. The review will also evaluate the experience of hope in informal caregivers caring for adult patients with advanced chronic diseases other than cancer as they transition toward end-of-life. INTRODUCTION: Hope is an important resource that assists patients and informal caregivers to deal with difficult and complex situations, such as living with advanced chronic disease. INCLUSION CRITERIA: The review will include studies written in English, French, and Portuguese exploring hope. Qualitative studies focusing on adult patients with advanced chronic diseases other than cancer and/or informal caregivers will be considered. Studies with children as patients or parents as caregivers will be excluded. METHODS: The review will search Embase, MEDLINE, CINAHL, PsycINFO, Web of Science, ProQuest Dissertations and Theses, DART-Europe E-theses Portal, and Google Scholar. The search will be conducted without date restrictions. Articles will be assessed against the inclusion criteria by two independent reviewers. Data will be extracted using a standard tool. The extracted findings will be synthesized using the meta-aggregation approach through assembling and categorizing data. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42021266487.

[Opiod prescription in primary care: the case of chronic non cancer pain]. / Prescription des opiacés en médecine de premier recours : le cas des douleurs chroniques non cancéreuses.

Pain, including chronic non-cancer pain (CNCP), is a common reason for primary care consultation. CNCP encompasses a heterogeneous group of patients, whose care is often complex. The increase in opioid prescription in Switzerland and worldwide is associated with CNCP, while opioid use for this indication is debated. Several studies suggest a limited effect on pain and function, while adverse effects are frequent. This article aims to summarize what is known about opioid prescription for CNCP and international guidelines and highlight important aspects for the general practitioner.

La douleur, dont la douleur chronique non cancéreuse (DCNC), est un motif de consultation très fréquent en médecine de premier recours. La DCNC regroupe des populations hétérogènes de patients dont la prise en charge est généralement complexe. L'augmentation de la prescription d'opiacés en Suisse et dans le monde concerne davantage les DCNC, alors que l'utilisation d'opiacés pour cette indication est controversée. Différentes études suggèrent que les effets bénéfiques sur la douleur et la fonctionnalité seraient limités contrairement aux effets secondaires relativement fréquents. Cet article a pour but de résumer l'état des connaissances sur la prescription d'opiacés pour les DCNC et les recommandations internationales pour fournir une aide pratique en médecine générale.

[Improving access to palliative care for patients with heart failure: advances and challenges]. / Améliorer l'accès aux soins palliatifs pour les patients atteints d'insuffisance cardiaque chronique - Avancées et défis.

Following the therapeutic progress of the last decades, patients suffering from chronic heart failure (HF) are living longer than ever before. However, recovery from a HF syndrome remains rare and patients more often have to live with chronic HF which considerably impacts their quality of life. For several years, national and international cardiology societies have recommended the early integration of palliative care for HF patients. Although the impact of palliative care on the quality of life, depression and general symptom management of patients with HF has now been clearly established, its implementation is still scarce. The objective of this review is to highlight recommendations and models of care for the implementation of palliative care for patients with HF.

Grâce aux progrès thérapeutiques des dernières décennies, les personnes atteintes d'insuffisance cardiaque (IC) ont une espérance de vie qui augmente. Cependant, la guérison du syndrome d'IC reste rare et le plus souvent les patients vivent avec une IC chronique ayant un impact considérable sur leur qualité de vie. Depuis de nombreuses années, les recommandations nationales et internationales de cardiologie préconisent une prise en charge palliative intégrée et précoce de ces patients. Bien que son impact sur la qualité de vie, la dépression et la gestion globale des symptômes des patients souffrant d'IC soit maintenant clairement démontré, son implémentation dans la pratique reste insuffisante. L'objectif de cet article est de mettre en lumière les recommandations et modèles de prise en charge palliative pour les patients souffrant d'IC.

Decrease in pain perception during acute SARS-CoV-2 infection: a case series.

ABSTRACT: Many reports have described pain appearance or an increase of chronic pain concomitant to severe acute respiratory syndrome coronavirus 2 infection. Here, we describe the cases of 3 patients with chronic cancer pain, in which COVID-19 was associated with a dramatic reduction or disappearance of pain. Pain reappeared after recovery from COVID-19. Neurological imaging and pathological findings, when available, were inconclusive. To the best of our knowledge, this is the first case series reporting an acute reduction in pain perception in COVID-19. We believe further investigation is mandatory because it could shed new light on the mechanisms of pain perception and modulation.

Shifting palliative care paradigm in primary care from better death to better end-of-life: a Swiss pilot study.

BACKGROUND: Patients suffering from advanced cancer often loose contact with their primary care physician (PCP) during oncologic treatment and palliative care is introduced very late. The aim of this pilot study was to test the feasibility and procedures for a randomized trial of an intervention to teach PCPs a palliative care approach and communication skills to improve advanced cancer patients' quality of life. METHODS: Observational pilot study in 5 steps. 1) Recruitment of PCPs. 2) Intervention: training on palliative care competencies and communication skills addressing end-of-life issues. 3) Recruitment of advanced cancer patients by PCPs. 4) Patients follow-up by PCPs, and assessment of their quality of life by a research assistant 5) Feedback from PCPs using a semi-structured focus group and three individual interviews with qualitative deductive theme analysis. RESULTS: Eight PCPs were trained. Patient recruitment was a challenge for PCPs who feared to impose additional loads on their patients. PCPs became more conscious of their role and responsibility during oncologic treatments and felt empowered to take a more active role picking up patient's cues and addressing advance directives. They developed interprofessional collaborations for advance care planning. Overall, they discovered the role to help patients to make decisions for a better end-of-life. CONCLUSIONS: While the intervention was acceptable to PCPs, recruitment was a challenge and a follow up trial was not deemed feasible using the current design but PCPs reported a change in paradigm about palliative care. They moved from a focus on helping patients to die better, to a new role helping patients to define the conditions for a better end-of-life. TRIAL REGISTRATION: The ethics committee of the canton of Geneva approved the study (2018-00077 Pilot Study) in accordance with the Declaration of Helsinki.

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Oncology, Dementia, Frailty, and Pulmonary Diseases.

Prognostication has been described as "Medicine's Lost Art." Taken with diagnosis and treatment, prognostication is the third leg on which medical care rests. As research leads to additional beneficial treatments for vexing conditions like cancer, dementia, and lung disease, prognostication becomes even more difficult. This article, written by a group of palliative care clinicians with backgrounds in geriatrics, pulmonology, and oncology, aims to offer a useful framework for consideration of prognosis in these conditions. This article will serve as the first in a three-part series on prognostication in adults and children.

Monitoring nociception and awareness during palliative sedation: A systematic review.

BACKGROUND: Providing unawareness and pain relief are core elements of palliative sedation. In addition to clinical scales, nociception and electroencephalogram-based depth of sedation monitoring are used to assess the level of consciousness and analgesia during sedation in intensive care units and during procedures. AIM: To determine whether reported devices impact the outcomes of palliative sedation. DESIGN: Systematic review and narrative synthesis of research published between January 2000 and December 2020. DATA SOURCES: Embase, Google Scholar, PubMed, CENTRAL, and the Cochrane Library. All reports describing the use of any monitoring device to assess the level of consciousness or analgesia during palliative sedation were screened for inclusion. Data concerning safety and efficacy were extracted. Patient comfort was the primary outcome of interest. Articles reporting sedation but that did not meet guidelines of the European Association for Palliative Care were excluded. RESULTS: Six reports of five studies were identified. Four of these were case series and two were case reports. Together, these six reports involved a total of 67 sedated adults. Methodological quality was assessed fair to good. Medication regimens were adjusted to bispectral index monitoring values in two studies, which found poor correlation between monitoring values and observational scores. In another study, high nociception index values, representing absence of pain, were used to detect opioid overdosing. Relatives and caregivers found the procedures feasible and acceptable.

No difference in effects of 'PACE steps to success' palliative care program for nursing home residents with and without dementia: a pre-planned subgroup analysis of the seven-country PACE trial.

BACKGROUND: 'PACE Steps to Success' is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents' comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia. METHODS: Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying-End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome). RESULTS: At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (- 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (- 0.6; p = 0.741), non-advanced and without dementia (- 1.5; p = 0.428), and advanced and non-advanced dementia (0.9; p = 0.632). CONCLUSIONS: The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents' comfort, this program needs further development. TRIAL REGISTRATION: ISRCTN, ISRCTN14741671 . Registered 8 July 2015 - Retrospectively registered.

Palliative care competencies for geriatricians across Europe: a Delphi consensus study.

PURPOSE: Integration of palliative care competencies with geriatric medicine is important for quality of care for older people, especially in the last years of their life. Therefore, knowledge and skills about palliative care for older people should be mandatory for geriatricians. The European Geriatric Medicine Society (EuGMS) has launched a postgraduate curriculum for geriatric medicine recently. AIM: Based on this work, the Special Interest Group (SIG) on Palliative care in collaboration with the SIG in Education and Training aimed to develop a set of specific palliative care competencies to be recommended for training at a postgraduate level. METHODS: Competencies were defined using a modified Delphi technique based upon a Likert like rating scale. A template to kick off the first round and including 46 items was developed based on pre-existing competencies developed in Switzerland and Belgium. RESULTS: Three Delphi rounds were necessary to achieve full consensus. Experts came from 12 EU countries. In the first round, the wording of 13 competencies and the content of 10 competencies were modified. We deleted or merged ten competencies, mainly because they were not specific enough. At the end of the 2nd round, one competence was deleted and for three questions the wordings were modified. These modifications had the agreement of the participants during the last round. CONCLUSION: A list of 35 palliative care competencies for geriatricians is now available for implementation in European countries.

Nurse-led patient-centred intervention to increase written advance directives for outpatients in early-stage palliative care: study protocol for a randomised controlled trial with an embedded explanatory qualitative study.

INTRODUCTION: Discussing the evolution of life-threatening diseases and end-of-life issues remains difficult for patients, relatives and professionals. Helping people discuss and formalise their preferences in end-of-life care, as planned in the Go Wish intervention, could reduce health-related anxiety in the advance care planning (ACP) and advance directive (AD) process. The aims of this study are (1) to test the effectiveness of the Go Wish intervention among outpatients in early-stage palliative care and (2) to understand the role of defence mechanisms in end-of-life discussions among nurses, patients and relatives. METHODS AND ANALYSIS: A mixed-methods study will be performed. A cluster randomised controlled trials with three parallel arms will be conducted with 45 patients with chronic progressive diseases impacting life expectancy in each group: (1) Group A, Go Wish intervention for patients and their relatives; (2) Group A, Go Wish intervention for patients alone and (3) Group B, for patients (with a waiting list), who will receive the standardised information on ADs (usual care). Randomisation will be at the nurse level as each patient is referred to one of the 20 participating nurses (convenience sample of 20 nurses). A qualitative study will be conducted to understand the cognitive and emotional processes and experiences of nurses, patients and relatives confronted with end-of-life discussions. The outcome measurements include the completion of ADs (yes/no), anxiety, quality of communication about end-of-life care, empowerment, quality of life and attitudes towards ADs. ETHICS AND DISSEMINATION: The study protocol has been approved by the Human Research Ethics Committee of the Canton of Geneva, Switzerland (no. 2019-00922). The findings will be disseminated to practice (nurses, patients and relatives), to national and international scientific conferences, and peer-reviewed journals covering nursing science, psychology and medicine. TRIAL REGISTRATION NUMBER: NCT04065685.