Specialist Palliative Care aims to effectively support the quality of life of patients and those close to them through progressive, life-limiting disease. Quality of life, an individual concept, requires a personalized approach to support and maintain it. Primarily achieved through the management of symptoms, both physical and psychological, alongside social and spiritual support, this approach is of the utmost importance to patients with advanced malignancy. Several randomized, controlled trials suggest earlier provision of specialist palliative care may increase quality of life, improve symptoms and facilitate considered end of life care planning. This appears beneficial; however, evidence is mixed about the effectiveness of early specialist palliative care and its potential benefits. Results, therefore, should be interpreted with caution. In reviewing the literature, it is clear that implementing early specialist palliative care is fraught with obstacles and requires increased resources and funding. Until the benefits and cost implications for such provision are better understood, it will not be accessible to all that may have potential to benefit.
Purpose: The objective of this pilot study is to evaluate the (1) applicability of a 15-hour attending-taught psychoeducational intervention in a retrospective cohort and (2) feasibility of a trainee-taught intervention in a prospective cohort of patients with gynecologic cancer to help manage cancer-related cognitive impairment (CRCI).
Methods: Adults with any stage gynecologic cancer who completed chemotherapy and reported cognitive complaints were eligible. Additionally, the screening criteria of Functional Assessment of Cancer Therapy–Cognition (FACT-Cog) perceived cognitive impairment (PCI) subscale score <59 was used in the prospective cohort. Validated patient-reported outcomes including FACT-Cog and Patient-Reported Outcomes Measurement Information System (PROMIS) Applied Cognition Abilities and General Concerns were measured before and after the intervention.
Results: Twelve patients underwent an attending-taught intervention between 2011 and 2014. Significant improvements in mean FACT-Cog PCI (+6.1, P < .048), quality of life (+2.4, P = .04), and total score (+9.8, P = .03) were demonstrated, while there was no significant change in mean FACT-Cog perceived cognitive abilities. Ten patients underwent a trainee-taught intervention in 2017. No significant changes in mean FACT-Cog subscale or total scores were seen. Significant improvements in PROMIS Applied Cognition Abilities (+8.2, P = .01) and PROMIS Applied Cognition General Concerns were demonstrated (-8.0, P < .01).
Conclusions: Our psychoeducational intervention demonstrates applicability to patients with gynecologic cancer reporting CRCI and supports the feasibility of more widespread training based on improvements in validated patient-reported outcomes related to cognition.
Cet article est le deuxième d'une série de deux qui se voit consacré au concept de présence chez les infirmières en soins palliatifs (SP), dans le cadre de la programmation de recherche SATIN II (SATisfaction, le sens au travail et le bien-être des INfirmières, Fillion et al. 2017). Le premier article visait à mieux comprendre l'expérience vécue de la présence selon le point de vue d'infirmières en SP. La présente étude qualitative a pour sa part comme objectif d'explorer les effets possibles d'une intervention de groupe basée sur le sens et la pleine conscience sur l'expérience de la présence des infirmières. Des entretiens semi-structurés ont été menés auprès de huit infirmières qui oeuvraient exclusivement dans un service de SP après leur participation à l'intervention de groupe. Nos analyses des récits des participantes nous ont permis de catégoriser en deux groupes les effets de l'intervention sur la présence des infirmières, soit les bienfaits de l'intervention : 1) être plus présente à soi ; 2) mieux faire face au stress du quotidien ; 3) revenir au "ici et maintenant" ; 4) accroître sa conscience de la présence et 5) donner sens au prendre soin. Nous avons également soulevé certains défis associés à l'intervention. En conclusion, notre recherche souligne la nécessité d'accompagner les soignants dans leur pratique de la présence et de la pleine conscience dans le cadre de leur travail.
AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations.
METHODS: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines.
RESULTS: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model.
CONCLUSIONS: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.
The aim of this exploratory survey was to provide an overview of physiotherapeutic and occupational therapeutic techniques and outcome measures applied in practice within palliative care. An anonymous web-based questionnaire was distributed to physiotherapists and occupational therapists in Flanders, Belgium between December 2017 and February 2018. A total of 91 respondents were included. Frequently applied interventions were: massage (51%), mobilization (49%), exercise therapy (46%), manual lymphatic drainage (42%), walking rehabilitation (40%) and breathing therapy (32%). Additional therapeutic aspects such as ‘comfort care’ and ‘creating a therapeutic alliance’ were mentioned by 34% of all therapists and cannot be ignored as an important part of treatment. Outcome measures were not always used to evaluate treatment because of time constraints and because progress was considered difficult to conceptualize in a palliative care context. The most frequently used outcome measures were a visual analogue scale (VAS) and the 6-minute walk test. In this study, the most frequently applied physiotherapeutic and occupational therapeutic interventions within palliative care were massage, mobilization and exercise therapy. However, therapists stress that these techniques are not mandatory, since care is always informed by the individual comfort and daily functioning of patients. Other than a VAS, outcome measures were used minimally.
PURPOSE OF REVIEW: People with cancer commonly experience persistent pain and psychological distress. Interventions are needed which address the multifactorial nature of pain and depression, yet few studies have examined the impact of mindfulness-based interventions (MBIs) for cancer-related pain and depression.
RECENT FINDINGS: MBIs for cancer-related pain and depression can be effectively delivered across a range of modalities and show promise for alleviating mood and some physical health symptoms, although not always pain. There is some evidence for the cost-effectiveness of MBIs.
SUMMARY: The field of MBIs would benefit from greater methodological rigour and investigation into a broader range of cancer populations to increase the knowledge base and in turn the evidence base on which interventions can be developed to the benefit to patients with cancer-related pain and depression.
BACKGROUND: While several internet interventions target severe prolonged grief symptoms after bereavement, no randomised controlled trial investigated interventions for prolonged grief after separation/divorce.
METHODS: This randomised controlled trial aimed to evaluate the efficacy of a guided internet-based self-help intervention for prolonged grief symptoms after spousal bereavement or separation/divorce compared to a wait-list control group. Furthermore, we analysed whether the intervention was also efficacious for participants with milder grief symptoms.
RESULTS: A total of 110 participants were mainly recruited by newspaper articles. Average age was 51 years, 77% were separated/divorced, 79% were female. Dropout rate was 11%. Compared to the control group, the intervention resulted in significant reductions in grief (d = 0.81), depression (d = 0.59), psychopathological distress (d = 0.39) (primary outcomes), embitterment (d = 0.37), loneliness (d = 0.37) and an increase in life satisfaction (d = -0.41) (secondary outcomes). These gains were maintained over three months. Improvements were similar among widowed and separated/divorced participants as well as among participants with low, medium or high levels of grief at baseline.
LIMITATIONS: Limitations include the self-selective sample and a rather small number of widowed participants.
CONCLUSIONS: Findings indicate that an internet intervention based on models for coping with grief after bereavement was not only beneficial for widowed but also separated or divorced participants. Furthermore, also participants with lower levels of grief at baseline benefitted from the intervention. This corroborates that indicated prevention efforts for grief are efficacious.
BACKGROUND: Increasing attention to palliative care for the general population has led to the development of various evidence-based or consensus-based tools and interventions. However, specific tools and interventions are needed for people with severe mental illness (SMI) who have a life-threatening illness. The aim of this systematic review is to summarize the scientific evidence on tools and interventions in palliative care for this group.
METHODS: Systematic searches were done in the PubMed, Cochrane Library, CINAHL, PsycINFO and Embase databases, supplemented by reference tracking, searches on the internet with free text terms, and consultations with experts to identify relevant literature. Empirical studies with qualitative, quantitative or mixed-methods designs concerning tools and interventions for use in palliative care for people with SMI were included. Methodological quality was assessed using a critical appraisal instrument for heterogeneous study designs. Stepwise study selection and the assessment of methodological quality were done independently by two review authors.
RESULTS: Four studies were included, reporting on a total of two tools and one multi-component intervention. One study concerned a tool to identify the palliative phase in patients with SMI. This tool appeared to be usable only in people with SMI with a cancer diagnosis. Furthermore, two related studies focused on a tool to involve people with SMI in discussions about medical decisions at the end of life. This tool was assessed as feasible and usable in the target group. One other study concerned the Dutch national Care Standard for palliative care, including a multi-component intervention. The Palliative Care Standard also appeared to be feasible and usable in a mental healthcare setting, but required further tailoring to suit this specific setting. None of the included studies investigated the effects of the tools and interventions on quality of life or quality of care.
CONCLUSIONS: Studies of palliative care tools and interventions for people with SMI are scarce. The existent tools and intervention need further development and should be tailored to the care needs and settings of these people. Further research is needed on the feasibility, usability and effects of tools and interventions for palliative care for people with SMI.
BACKGROUND: In 2016, Kavalieratos and colleagues performed a systematic review of randomized clinical trials (RCTs) of palliative care (PC) interventions. The majority of RCTs included focused on oncology, with fewer in heart failure (HF). Cancer patients' often predictable decline differs from the variable illness trajectories of HF; however, both groups experience similar palliative needs, and accordingly, PC in HF continues to grow.
OBJECTIVE: To investigate if PC interventions differ between cancer and HF patients.
DESIGN: In this secondary analysis, we compare PC interventions for cancer and HF patients evaluated in the 2016 systematic review. Settings/Subjects: We included a total of 25 trials, 19 of which included 3730 cancer patients, and 6 of which included 1049 HF patients (mean age, 67 years).
MEASUREMENTS: We compared the following five characteristics among included trials: PC domains addressed, duration, location, provider specialization, and measured outcomes.
RESULTS: The content of the cancer and HF interventions was similar. HF interventions tended to include more home-based (50% vs. 37%) and specialty PC interventions (67% vs. 47%), although these results did not reach statistical significance. Both cancer and HF interventions favored longer durations (i.e., more than one month; 79% and 67%). No HF intervention RCTs included caregiver outcomes, whereas 32% of cancer interventions did.
CONCLUSIONS: There were no substantial differences in content of cancer and HF interventions, although the latter tended to be delivered by PC specialists at home. There is a need for scalable interventions that incorporate the needs and preferences of individual patients, regardless of diagnosis.
Context: Though palliative sedation has been recognized as an acceptable practice in Canada for many years now, there is a lack of clinical research and guidelines pertaining to its use as a treatment of existential refractory symptoms in the terminally ill.
Objectives:This scoping review aimed to survey the literature surrounding palliative sedation and existential suffering and to inform research, policy, and practice.
Methods: to address the main research question: Is palliative sedation an acceptable intervention to treat existential refractory symptoms in adults aged 65 and older? a scoping review following Arksey and O’Malley’s framework was performed, spanning electronic databases of the peer reviewed and grey literature. Articles were screened for inclusion, and a thematic content analysis allowed for a summary of key findings.
Results: Out of 427 search results, 71 full text articles were obtained, 20 of which were included. Out of these articles, four themes were identified as key findings. These included: (1) Ethical considerations; (2) The role of the health care provider; looking specifically at the impact on nurses; (3) The need for multidisciplinary care teams; and (4) Existential suffering's connection to religiosity and spirituality.
Conclusion: Palliative sedation to treat existential refractory symptoms was labelled a controversial practice. A shortage of evidence-based resources limits the current literature’s ability to inform policy and clinical practice. There is a need for both qualitative and quantitative multi-center research so health care professionals and regional-level institutions have firm roots to establish proper policy and practice.
Family caregivers are an increasingly diverse group of individuals who provide significant amounts of direct and indirect care for loved ones with long-term chronic illnesses. Caregiver needs are vast, particularly as these relate to the caregiver's quality of life. However, caregivers are often unlikely to address their personal and health-related concerns. Unmet needs combined with the caregiving role often lead to high levels of caregiver anxiety. Unaddressed, this anxiety is likely to result in poor health and low quality of life. Nurses, along with the health care team, are well positioned to assess, monitor, intervene, and reassess anxiety levels in caregivers using standardized screening tools across care settings. This article focuses on the family caregiver anxiety symptom in community-based settings, where health care providers have unique opportunities to detect this symptom in a familiar environment and begin immediate intervention leading to promotion of quality of life for the caregiver and subsequently the care recipient. Additional research efforts should be focused on health care provider goals of care, dyadic assessments, and monitoring of caregiver needs while caring for their loved ones aging in place.
BACKGROUND: Most seriously ill older adults visit the emergency department (ED) near the end of life, yet no feasible method exists to empower them to formulate their care goals in this setting.
OBJECTIVE: To develop an intervention to empower seriously ill older adults to formulate their future care goals in the ED.
DESIGN: Prospective intervention development study.
SETTING: In a single, urban, academic ED, we refined the prototype intervention with ED clinicians and patient advisors. We tested the intervention for its acceptability in English-speaking patients ‡ 65 years old with serious illness or patients whose treating ED clinician answered ‘‘No’’ to the ‘‘surprise question’’ (‘‘would not be surprised if died in the next 12 months’’). We excluded patients with advance directives or whose treating ED clinician determined the patient to be inappropriate.
MEASUREMENTS: Our primary outcome was perceived acceptability of our intervention. Secondary outcomes included perceived main intent and stated attitude toward future care planning.
RESULTS: We refined the intervention with 16 mock clinical encounters of ED clinicians and patient advisors. Then, we administered the refined intervention to 23 patients and conducted semistructured interviews afterward. Mean age of patients was 76 years, 65% were women, and 43% of patients had metastatic cancer. Most participants (n = 17) positively assessed our intervention, identified questions for their doctors, and reflected on how they feel about their future care.
CONCLUSION: An intervention to empower seriously ill older adults to understand the importance of future care planning in the ED was developed, and they found it acceptable.
BACKGROUND: Methods to improve care, trust and communication are important in acute hospitals. Complex interventions aimed at improving care of patients approaching the end of life are increasingly common. While evaluating outcomes of complex interventions is essential, exploring healthcare professionals' perceptions is also required to understand how they are interpreted; this can inform training, education and implementation strategies to ensure fidelity and consistency in use.
AIM: To explore healthcare professionals' perceptions of using a complex intervention (AMBER care bundle) to improve care for people approaching the end of life and their understandings of its purpose within clinical practice.
DESIGN: Qualitative study of healthcare professionals. Analysis informed by Medical Research Council guidance for process evaluations.
SETTING/PARTICIPANTS: A total of 20 healthcare professionals (12 nursing and 8 medical) interviewed from three London tertiary National Health Service hospitals. Healthcare professionals recruited from palliative care, oncology, stroke, health and ageing, medicine, neurology and renal/endocrine services.
RESULTS: Three views emerged regarding the purpose of a complex intervention towards the end of life: labelling/categorising patients, tool to change care delivery and serving symbolic purpose indirectly affecting behaviours of individuals and teams. All impact upon potential utility of the intervention. Participants described the importance of training and education alongside implementation of the intervention. However, adequate exposure to the intervention was essential to witness its potential added value or embed it into practice.
CONCLUSION: Understanding differing interpretations of complex interventions is essential. Consideration of ward composition, casemix and potential exposure to the intervention is critical for their successful implementation.
Spousal loss is one of life’s greatest stressors. Bereaved spouses are at risk for aberrant cognitive and affective processing. Recent work in psychoneuroimmunology and cognitive neuroscience reveals physiological biomarkers and neural mechanisms underlying acute distress and grief during bereavement that may represent targets for future interventions. We review evidence from existing pharmacological and psychotherapeutic treatment approaches for normal bereavement, complicated grief, and bereavement-related depression. We propose promising future directions, namely the development and empirical validation of novel, personalised cognitive and neurostimulatory interventions to promote adaptive emotion regulation and reduce depressive symptoms following spousal loss. Future work may substantiate which interventions to improve emotional and physical health will be best matched to the needs of a particular surviving spouse.
Background: Family caregivers are a key communication source for nurses, and there is a need to provide communication skill building for caregivers.
Objective: A pilot study was conducted to determine feasibility and use of a communication coaching telephone intervention aimed at improving caregiver confidence in communication and reducing psychological distress.
Methods: A printed communication guide for caregivers and a 1-time communication coaching call delivered by a research nurse were provided to caregivers. Recruitment and attrition, implementation and content of coaching calls, caregiver outcomes, and satisfaction with intervention were analyzed.
Results: Twenty caregivers were recruited across 4 cohorts-diagnosis, treatment, survivorship, and end of life-with recruitment greater than 70%. Caregiver calls averaged 37 minutes, and most caregivers reported communication challenges with family members. Caregiver action plans revealed a need to develop communication skills to ask for help and share information. Caregivers reported satisfaction with the print guide, and 90% of caregivers followed through with their action plan, with 80% reporting that the action plan worked. Caregiver confidence in communication with healthcare providers was improved, except for caregivers of cancer survivors.
Conclusions: Recruitment and attrition rates demonstrate feasibility of the intervention. Caregivers reported that the communication coaching telephone intervention was considered valuable and they were able to implement a communication action plan with others.
Implications for practice: Lessons were learned about intervention content, namely, that nurses can help caregivers learn communication strategies for asking for help, sharing cancer information, and initiating self-care.
Introduction: Patient-centred care is essential to the delivery of healthcare; however, this necessitates direct patient involvement in clinical decision-making and can be challenging for patients diagnosed with advanced non-small cell lung cancer where there may be misunderstanding of the extent of disease, prognosis and aims of treatment. In this context, decisions are complex and there is a need to balance the risks and benefits, including treatment with palliative intent. The aim of the PACT study is to identify the information and decision support needs of patients, leading to the development of an intervention to support patients with advanced lung cancer when considering treatment options.
Methods and analysis: PACT is a five-stage, multimethod and multicentre study. Participants: Patients and health professionals will be recruited from three health boards. Methods: Non-participant observation of multidisciplinary team meetings (n=12) will be used to determine patients' allocation to treatment pathways (stage I). Non-participant observation of patient-clinician consultations (n=20-30) will be used to explore communication of treatment options and decision-making. Extent of participation in decision-making will be assessed using the Observing Patient Involvement in Shared Decision-Making tool. Interviews with patients (stage III) and their clinicians (stage IV) will explore the perception of treatment options and involvement in decision-making. Based on stages I-IV, an expert consensus meeting will finalise the content and format of the intervention. Cognitive interviews with patients will then determine the face validity of the intervention (stage V). Analysis: analysis will be according to data type and research question and will include mediated discourse analysis, thematic analysis, framework analysis and interpretative phenomenological analysis.
Ethics and dissemination: Ethical approval has been granted. The study findings will contribute to and promote shared and informed decision-making in the best interest of patients and prudent healthcare. We therefore aim to disseminate results via relevant respiratory, oncology and palliative care journals and conferences.
Objectives: Patients with severe heart failure (HF) suffer from a high symptom burden and high mortality. European and Swedish guidelines for HF care recommend palliative care for these patients. Different models for integrated palliative care and HF care have been described in the literature. No studies were found that qualitatively evaluated these models. The purpose of this study is to describe patients' experiences of a new model of person-centred integrated HF and palliative care at home.
Method: Interviews were conducted with 12 patients with severe HF (New York Heart Association class IIIâ€"IV) and included in the research project of Palliative advanced home caRE and heart FailurE caRe (PREFER). Qualitative content analysis was used for data analysis.
Results: Two themes and a total of five categories were identified. The first theme was feeling secure and safe through receiving care at home with the categories: having access to readily available care at home, being followed up continuously and having trust in the team members' ability to help. The second theme was being acknowledged as both a person and a patient, with the following two categories: being met as a person, participating in decisions about one's care and receiving help for symptoms of both HF and comorbidities.
Conclusions: Person-centred integrated HF and palliative care provides a secure environment and holistic care for patients with severe HF. This approach is a way to improve the care management in this population.
Purpose of review: In comparison with patients who have other serious illnesses, patients with advanced kidney disease have a higher rate of intensive care utilization at the end of life and receive palliative care less frequently. Consensus and clinical practice guidelines have therefore recommended the incorporation of palliative care earlier in the disease trajectory. This review summarizes recent literature on this aspect of care and will highlight future directions for patient-centered care within palliative nephrology.
Recent findings: Patients with advanced kidney disease and their families frequently do not engage effectively with their clinicians to make informed treatment decisions or plan for care at the end of life. Furthermore, racial and ethnic minority patients continue to receive a lower rate of palliative care services compared to other racial groups. Interventions that promote better palliative care communication and education among nephrology clinicians, patients and their families are becoming increasingly more common in nephrology.
Summary: Overall, improved understanding of the unique care needs of patients with advanced and end-stage kidney disease provides a solid foundation to improve palliative and end-of-life care delivery among diverse populations in nephrology.
Cet article décrit les éléments éducatifs, pour les patients et leurs aidants familiaux, d’une intervention interdisciplinaire adaptée de soins palliatifs guidée par une infirmière dans le cas de patients atteint d'un cancer du poumon à un stade précoce et à un stade avancé. L'article se focalise sur la procédure de l'intervention.
Les auteurs revoient la littérature scientifique vis-à-vis du bénéfice que peuvent retirer les enfants endeuillés des services de soutien de deuil communautaires. Force est de constater que les preuves empiriques ne sont pas assez concluantes.