Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Psychosocial Impact of Virtual Cancer Care through Technology: A Systematic Review and Meta-Analysis of Randomized Controlled Trials.

This meta-analysis of RCTs aimed to determine whether replacing face-to-face hospital care with telemedicine deteriorates psychosocial outcomes of adult cancer patients, in terms of quality of life (QoL), anxiety, distress, and depression. RCTs on interventions aimed at improving patient psychosocial outcomes were excluded. MEDLINE, EmBASE, and PsycInfo were searched on 13 May 2022 without language or date restrictions. In total, 1400 records were identified and 8 RCTs included (4434 subjects). Study methodological quality was moderate. Statistically significant improvements were observed in favor of the intervention for QoL (SMD = 0.22, 95% CI 0.01 to 0.43, p = 0.04), anxiety (SMD = -0.17, 95% CI -0.30 to -0.04, p < 0.01), and global distress (SMD = -0.38, 95% CI -0.51 to -0.25, p < 0.01). A meta-analysis on depression could not be performed. In subgroup analyses, the intervention appeared to be more beneficial for patients receiving active treatment vs. follow-up, for "other cancer types" vs. breast cancer, and for "other modes of administration" vs. telephone. Given the many potential advantages of being assisted at home, telemedicine appears to be a viable option in oncology. However, more research is necessary to determine the types of patients who may benefit the most from these alternative care modalities.

Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan.

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Psychosocial Care for Adult Cancer Patients: Guidelines of the Italian Medical Oncology Association.

Psychosocial morbidity can have negative consequences for cancer patients, including maladaptive coping, poor treatment adherence, and lower quality of life. Evidence shows that psychosocial interventions can positively impact quality of life, as well as symptoms and side effects; however, they are not always offered to patients who might benefit from them. These guidelines were produced by a multidisciplinary panel of 16 experts, including patients, following GRADE methodology. The panel framed clinical questions and voted on outcomes to investigate. Studies identified by rigorous search strategies were assessed to rate certainty of evidence, and recommendations were formulated by the panel. Although the quality of the evidence found was generally moderate, interventions could be recommended aimed at improving patient information, communication with healthcare professionals and involvement in decision-making; detecting and managing patient psychosocial needs, particularly with non-pharmacological therapy; and supporting families of patients with advanced cancer. The role of nurses as providers of information and psychosocial care is stressed. Most recommended interventions do not appear to necessitate new services or infrastructures, and therefore do not require allocation of additional resources, but predominantly involve changes in clinical staff behavior and/or ward organization. Patients should be made aware of psychosocial care standards so that they can expect to receive them.

Chest wall infiltration is a critical prognostic factor in breast implant-associated anaplastic large-cell lymphoma affected patients.

BACKGROUND: Breast implant-associated anaplastic large-cell lymphoma is a rare disease with a favourable prognosis if adequately treated. Same staged patients have usually a similar prognosis and outcomes, but in our experience, IIA-staged patients have a wider prognosis with outcomes that vary from complete disease response to death. This study aimed to understand and identify all the factors that could influence the prognosis of this group of patients and verify if their prognosis matches the stage they belong to. MATERIAL AND METHODS: Patients in stage IIA have been divided into two subgroups: IIAb with lymphoma extension towards the glandular tissue and IIAcw with tumour extension towards the chest-wall. The overall survival (OS) and event-free survival (EFS) of 64 BIA-ALCL cases were evaluated for each staged group. RESULTS: Significant differences of OS and EFS between IIAb and IIAcw patients (log-rank p = 0.046 and log-rank p = 0.018, respectively) were observed and poor prognosis joined IIAcw- and IV-staged patients. CONCLUSION: Chest-wall infiltration is a critical prognostic factor in BIA-ALCL patients as it influences the possibility of performing a surgical radical tumour extirpation. Our results could represent valid assistance for the physicians in choosing the most appropriate BIA-ALCL prognostic category and treatment and could promote further wider studies to provide stronger evidence on a possible revision of the MDA TNM classification.

Frequency, severity, and impact on daily life of delayed and intercycle chemotherapy-induced nausea, vomiting, and retching.

INTRODUCTION: Chemotherapy-induced nausea, vomiting, and retching (CINVR) remains a common side effect of treatment. Most previous studies have focused on vomiting control; nausea and retching have been less explored. This study aimed at describing the incidence, severity, and impact on daily life (IDL) of CINVR in the acute (0-24 hours), delayed (>24-120 hours), and overall (0-120 hours) postchemotherapy periods and beyond 120 hours (until next chemotherapy administration); and the pharmacologic and nonpharmacologic strategies adopted by patients to relieve symptoms. METHODS: This was a single-center, cross-sectional study of 60 patients undergoing chemotherapy. Participants reported the frequency, severity, and IDL of CINVR from the day of chemotherapy administration up to 120 hours thereafter and nausea and vomiting that occurred beyond 120 hours, as well as pharmacologic and nonpharmacologic remedies used. RESULTS: Forty-seven (78.3%, 95% confidence interval [CI] 66.4-86.9), 37 (61.7%, 95% CI 49.0-72.9), and 35 (58.3%, 95% CI 45.7-69.9) patients reported no nausea (Numeric Rating Scale ⩽1), vomiting, or retching in the acute, delayed, and overall periods, respectively. Nausea was more frequent, more severe, and had a greater IDL than did vomiting and retching across the overall observation period; beyond 120 hours, 11 (18.3%, 95% CI 10.6-29.9) patients reported nausea and none reported vomiting, with a median IDL of 1/10 (interquartile range: 0.75-5.00; 95% CI 0-7.6). Metoclopramide (n = 57 administrations), dexamethasone (n = 28), eating small servings of food (n = 13), and aloe (n = 11) were the most commonly used rescue therapies. CONCLUSIONS: Future studies should set hard outcomes, such as the absence of any symptoms, as a primary end point, and these should be assessed across and beyond the 120-hour period.

A qualitative study of family carers views on how end-of-life communication contributes to palliative-oriented care in nursing home.

BACKGROUND: Although family-centered communication about end-of-life care has been recognized to promote palliative-oriented care in nursing home (NH), how this communication may work is still unknown. Therefore, we explored the mechanisms by which end-of-life communication may contribute to palliative-oriented care in NH from the perspective of bereaved family carers. METHODS: A descriptive qualitative design was performed. Interviews were conducted with 32 bereaved family carers whose relative had died between 45 days to 9 months prior from 13 different NHs. A two-steps analysis process firstly with deductive and then with inductive content analysis was adopted. RESULTS: Four mechanisms by which end-of-life communication contributed to palliative-oriented care were identified: a) promoting family carers understanding about their relative's health conditions, prognosis, and treatments available; b) fostering shared decision-making between healthcare professionals and residents/family carers; c) improving knowledge of residents' preferences; and d) improving knowledge of family carers' preferences. CONCLUSION: Clear and in-depth communication provides insight into residents' and family carers' preferences for care and treatment at the end-of-life, and increases understanding and shared decision-making.

Mechanisms by which end-of-life communication influences palliative-oriented care in nursing homes: A scoping review.

OBJECTIVE: End-of-life communication has been largely recognized to promote quality end-of-life care in nursing home (NHs) by increasing residents' likelihood of receiving comfort-oriented care. This scoping review summarizes what is known about the potential mechanisms by which end-of-life communication may contribute to palliative-oriented care in NHs. METHODS: Using the framework proposed by Arksey and O'Malley and refined by the Joanna Briggs Institute methodology, five literature databases were searched. We extracted 2159 articles, 11 of which met the inclusion criteria: seven quantitative, three qualitative, and one mixed-methods study. RESULTS: Three mechanisms were identified: a) promotion of family carers' understanding about their family member's health condition, prognosis, and treatments available; b) fostering of shared decision-making between health care professionals (HCPs) and residents/family carers; and c) using and improving knowledge about residents' preferences. CONCLUSION: Family carers' understanding, shared decision-making, and knowledge of residents' preferences contribute to palliative-oriented care in NHs. PRACTICE IMPLICATIONS: Discussions about end-of-life should take place early in a resident's disease trajectory to allow time for family carers to understand the condition and participate in subsequent, mindful, shared decision-making. HCPs should conduct systematic and thorough discussions about end-of-life treatment options with all cognitively competent residents to promote informed advance directives.

Randomized Controlled Trials and Quasi-Experimental Studies Published in Nursing Journals: Findings From a Scoping Review With Implications for Further Research.

BACKGROUND: Experimental studies are considered capable of generating substantial evidence; therefore, their production and diffusion are continuously encouraged. However, their trends as publication outputs in nursing journals have rarely been evaluated to date. AIMS: To describe experimental study design features among the highest indexed nursing journals. METHODS: A scoping review was performed by retrieving and analyzing experimental studies published between 2009 and 2016 in nursing journals with a 5-year impact factor >1.5 according to Thomson's Journal Citation Reports. RESULTS: A total of 602 studies were reviewed and 340 (56%) were included; in all, 298/340 (87.6%) were randomized controlled trials (RCTs) and 37/340 (10.9%) pilot studies. The publication trend exhibited a fluctuating pattern with a slight decrease over time (from 54 studies in 2009 to 32 in 2016). Researchers working in Asia and Europe have published more frequently in the selected journals. Published studies most often involved oncological (n = 69, 20%), surgical (n = 41, 12%), and elderly patients (n = 38, 11%). Educational and supportive (n = 119, 35%) interventions were mainly tested for effectiveness. Approximately half of studies enrolled <100 patients, and only two-thirds had included an a priori sample size calculation. Less than one quarter (n = 76) of the research teams were multiprofessional, and 70% of studies were funded, generally, by public institutions. LINKING EVIDENCE TO ACTION: A broad range of research questions has been investigated to date by using experimental study designs. However, study methods and multidisciplinary collaborations must be enhanced with the intent of producing large-scale and methodologically sound studies. Furthermore, reasons for limited funding and, particularly, the lack of support from private funding should be further investigated.

Good end-of-life care in nursing home according to the family carers' perspective: A systematic review of qualitative findings.

BACKGROUND: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. AIM: To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective. DESIGN: Systematic review (PROSPERO no. 95581) with meta-aggregation method. DATA SOURCES: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied. RESULTS: In all, 18 studies met inclusion criteria. A 'life crisis' often resulted in a changed need of care, and the transition towards palliative care was sustained by a 'patient-centered environment'. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident's end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care. CONCLUSION: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.

The Impact of Nursing Homes Staff Education on End-of-Life Care in Residents With Advanced Dementia: A Quality Improvement Study.

CONTEXT: End-of-life care in nursing homes (NHs) needs improvement. We carried out a study in 29 NHs in the Lombardy Region (Italy). OBJECTIVES: The objective of this study was to compare end-of-life care in NH residents with advanced dementia before and after an educational intervention aimed to improving palliative care. METHODS: The intervention consisted of a seven-hour lecture, followed by two 3-hour meetings consisting of case discussions. The intervention was held in each NH and well attended by NH staff. This multicenter, comparative, observational study included up to 20 residents with advanced dementia from each NH: the last 10 who died before the intervention (preintervention group, 245 residents) and the first 10 who died at least three months after the intervention (postintervention group, 237 residents). Data for these residents were collected from records for 60 days and seven days before death. RESULTS: The use of "comfort hydration" (<1000 mL/day subcutaneously) tended to increase from 16.9% to 26.8% in the postintervention group. The number of residents receiving a palliative approach for nutrition and hydration increased, though not significantly, from 24% preintervention to 31.5% postintervention. On the other hand, the proportion of tube-fed residents and residents receiving intravenous hydration decreased from 15.5% to 10.5%, and from 52% to 42%, respectively. Cardiopulmonary resuscitations decreased also from 52/245 (21%) to 18/237 (7.6%) cases (P = 0.002). CONCLUSION: The short educational intervention modified some practices relevant to the quality of end-of-life care of advanced dementia patients in NHs, possibly raising and reinforcing beliefs and attitudes already largely present.

Association Between End-of-Life Conversations in Nursing Homes and End-of-Life Care Outcomes: A Systematic Review and Meta-analysis.

OBJECTIVE: Less aggressive end-of-life (EOL) care has been observed when health care professionals discuss approaching EOL and preferences about life-sustaining treatments with nursing home (NH) residents or their families. We performed a comprehensive systematic review to evaluate the association between health care professionals-residents and health care professionals-family EOL conversations and EOL care outcomes. DESIGN: Systematic review with meta-analysis. SETTING AND PARTICIPANTS: Seven databases were searched in December 2017 to find studies that focused on health care professionals-residents (without oncologic disease) and health care professionals-family EOL conversations and aimed to explore the impact of EOL conversations on resident's or family's EOL care outcomes. MEASURES: Random effects meta-analyses with subsequent quality sensitivity analysis and meta-regression were performed to assess the effects of EOL conversations on the decision to limit or withdraw life-sustaining treatments. A funnel plot and Eagger test were used to assess publication bias. RESULTS: 16 studies were included in the qualitative and 7 in the quantitative synthesis. Health care professionals-family EOL conversations were positively associated with the family's decision to limit or withdraw life-sustaining treatments (odds ratio = 2.23, 95% confidence interval: 1.58-3.14). The overall effect of health care professionals-family EOL conversations on the family's decision to limit or withdraw life-sustaining treatments remained stable in the quality sensitivity analysis. In the meta-regression, family members with a higher level of education were less influenced by EOL conversations with health care professionals when making decisions about limiting or withdrawing life-sustaining treatments. No publication bias was detected (P = .4483). CONCLUSIONS/IMPLICATIONS: This systematic review shows that EOL conversations promote palliative care. Structured conversations aimed at exploring NH resident preferences about EOL treatment should become routine. NH administrators should offer health care professionals regular training on EOL conversations, and resident-centered care that involves residents and their families in a shared decision-making process at EOL needs to be promoted.

Pneumonia in Nursing Home Patients With Advanced Dementia: Decisions, Intravenous Rehydration Therapy, and Discomfort.

BACKGROUND: Comfort may be an appropriate goal in advanced dementia. Longitudinal studies on physician decision-making and discomfort assessed by direct observation are rare, and intravenous rehydration therapy is controversial. METHODS: To assess treatment decisions and discomfort in patients with advanced dementia and pneumonia and to compare by intravenous rehydration therapy, we used data from the observational multicenter Italian End of Life Observatory-Prospective Study On DEmentia patients Care. We analyzed 109 episodes of pneumonia, which involved decisions in 77 nursing home patients with Functional Assessment Staging Tool stage 7. We assessed decisions, decision-making, and treatments every fortnight. Trained observers assessed discomfort with the Discomfort Scale-Dementia Alzheimer Type (DS-DAT). RESULTS: Most decisions referred to treatment with antibiotics (90%; 98 of 109) and intravenous rehydration therapy (53%; 58 of 109), but hospitalization was rare (1%). Selecting decisions with antibiotics, with rehydration therapy, the prognosis was more frequently <15 days (34% vs 5% without rehydration therapy; P = .001), and a goal to reduce symptoms/suffering was more common (96% vs 74%; P = .005) while there was no difference in striving for life prolongation (a minority). With rehydration therapy, the decision was more often discussed with family rather than communicated only. Mean DS-DAT scores over time proximate to the first decision ranged between 9.2 and 10.5. CONCLUSIONS: Italian nursing home patients with advanced dementia and pneumonia frequently received invasive rehydration therapy in addition to antibiotics, however, mostly with a palliative intent. Discomfort was high overall and symptom relief may be improved. Relations between invasive rehydration therapy and discomfort need further study.

[Pain management in patients of a Swiss Institute of Oncology and the role of nurses: from programs to reality]. / La gestione del dolore nei pazienti di un Istituto Oncologico Svizzero e il ruolo degli infermieri: dai programmi alla realtà.

INTRODUCTION: In 2004, the Oncology Institute of Southern Switzerland (IOSI) started a program to improve cancer pain treatment, through training of health professionals and the introduction of monitoring tools . AIM: The aim is to evaluate patient relief from pain (effective pain control), with attention to nursing role (pain assessment, monitoring and documentation). METHOD: Retrospective study. The health records of patients admitted in the last three months of 2010 were consulted to evaluate how pain was assessed and managed. RESULTS: Out of 177 patients admitted, 93 (52.6 %) experienced pain during hospitalization and 85 were included in the analysis . Sixty-two out of 85 (72.9 %) received drugs in reserve > = 2 days. They had pain from 2 to 28 days (median 4). For 56/62 patients ( 90.3 %) analgesic therapy was changed one or more times and 40 of them ( 63.4 % ) received strong opioids during hospitalization . In 8/62 cases pain wasn't documented, and overall, in 25/85 (29.4 %) intensity or any other feature weren't documented. CONCLUSIONS: At IOSI there is a good pharmacological control of pain. Analgesics are prescribed upon entry and are modulated according to patient needs, even with wide administration of opioids. The issue to improve is pain assessment and monitoring by nurses, whose role is mainly oriented to contribute to the pharmacological management of this symptom.

Delayed Chemotherapy-Induced Nausea and Vomiting in the Hematology Population: A Review of the Literature.

BACKGROUND: Chemotherapy-induced nausea and vomiting (CINV) is one of the most bothersome problems experienced by patients with cancer and results in serious complications. Considerable progress has been made in the management of acute CINV, but many patients receiving chemotherapy still complain of delayed nausea. In particular, delayed CINV affects patients in the hematology population who typically undergo several frontline chemotherapy regimens, multiday conditioning regimens, and salvage treatments. However, no international guidelines exist for the prevention of CINV in this population. OBJECTIVES: This article provides a literature review of the pathophysiologic mechanisms of delayed CINV as well as the etiologies, assessment strategies, and potential therapies in this population. METHODS: A narrative review of the literature was performed. FINDINGS: Nurses fulfill an important role in the assessment of delayed symptoms by ensuring adequate measurement of the duration, frequency, severity, and distress caused by nausea, vomiting, and retching. A systematic assessment of retching, in addition to nausea and vomiting, that involves patients' assessment of their own symptoms may enhance the accuracy of clinical reports, leading to improved tolerability of chemotherapy and patient quality of life. In addition, nurses may actively contribute to the development of specific guidelines for hematologic malignancies and a patient risk factor algorithm for optimizing the tolerability of chemotherapy.

Delayed chemotherapy-induced nausea and vomiting in autologous hematopoietic cell transplant patients: an exploratory analysis.

PURPOSE: Delayed chemotherapy-induced nausea and vomiting (CINV) continues to be a problem in patients undergoing a hematopoietic cell transplant (HCT) despite progress in antiemetic prophylaxis. This study investigated the clinical course of nausea and vomiting (NV) and retching over the 5 days following an autologous HCT in a transplant setting. METHODS: This longitudinal observational study was an exploratory analysis of data from a trial that assessed the efficacy of aroma in preventing NV related to dimethyl sulfoxide in 69 autologous HCT patients undergoing highly emetogenic chemotherapy (HEC; n = 56) or moderately emetogenic chemotherapy (MEC; n = 13). RESULTS: Nausea started to increase on the second day after reinfusion, with a peak between 72 and 96 hours, and decreased on the fifth day. The pattern for vomiting was similar, while retching episodes remained unchanged after the third day following transplant. Nausea and emesis were observed in 73% (n = 41) and 64% (n = 36) of HEC patients, respectively, and in 85% (n = 11) and 62% (n = 8) of MEC patients, respectively. CONCLUSIONS: Uncontrolled delayed CINV is still a challenge for autologous HCT patients. Nausea, vomiting and retching are 3 different symptoms that should be assessed and managed separately in routine clinical practice.

Are orange lollies effective in preventing nausea and vomiting related to dimethyl sulfoxide? A multicenter randomized trial.

PURPOSE: Nausea and vomiting (NV) related to DMSO affect patients undergoing auto-SCT despite antiemetic measures. Orange flavoring may reduce gastrointestinal symptoms. METHODS: A multicenter, randomized, three-arm, open-label trial in four Italian large bone marrow transplant centers was conducted to assess the effectiveness of orange aroma in preventing NV related to DMSO. Patients were randomized to orange ice lollies, non-citrus ice lollies, and routine treatment (deep breaths) during reinfusion. Data on NV were collected up to 5 days after infusion; 69/98 patients were randomized: 23 to orange, 21 to non-citrus ice lollies, and 25 to routine treatment. RESULTS: Although 48 h after transplantation no differences were observed in controlled nausea (Numerical Rating Scale (NRS) 0-100, ≤25) or vomiting, significantly fewer patients had no episodes of vomiting, no antiemetic rescue therapy, and no nausea (NRS <5) in the deep breath vs lollies groups (P = 0.017). The intensity of nausea over time differed significantly between ice lollies vs routine care (P = 0.001) groups, but not between the orange and non-citrus groups (P = 0.428). CONCLUSION: The vasoconstrictive action of ice may prevent NV related to DMSO in the acute phase and reduce the need for rescue antiemetic therapy. Ice lollies offer a simple, noninvasive, and economic means for relieving nausea and vomiting related to this preservative.