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.
BACKGROUND: Eating and drinking are essential also in social life. Nutrition and hydration (N&H) at end of life are often a source of discussion and distress. Stopping eating and drinking is a defining element of the dying phase, however, this time point is not well defined. The aim of this retrospective analysis was to investigate whether such a time point can be detected, whether there are specific characteristics associated.
METHODS: The time point when patients stopped oral intake was analyzed in relation to time until death on a specialist palliative care ward (sPCW) of a tertiary comprehensive cancer center. This "tipping point" (TP) was defined as the time point when total food intake fell below 25% of normal solid intake (TP-S) and "tipping point fluid" (TP-F) when fluid intake fell below 500 ml/day (oral/intravenous/subcutaneous). Demographic and medical data, the N&H-module in the electronic patient management system and the daily multiprofessional treatment notes at TP (±3 days) were analyzed in all patients cared on the sPCW between 1/15 and 9/17.
RESULTS: In these 32 months, of 1194 treated patients 683 (57%) died on the ward. A TP-S was identified in 291 patients prior to dying on the ward (43%) with a median time of six days from to TP-S death. In 75% of these patients, TP-S occurred within two weeks prior to death (range: 0-5 weeks). A TP-F was detected in 202 patients (30%) with a median TP-F-time of two days prior to death. In 75% of these patients, the TP-F was within three days prior to death (range: 0-14 days). The cancer entities in patients in whom TPs could be detected were heterogeneous. No specific disease-related or sociodemographic characteristics for patients with TPs could be determined. In the daily treatment notes, oral and swallowing problems, taste alterations and discussions about stopping artificial nutrition were mentioned.
CONCLUSION: In less than half of dying patients a definitive TP could be detected. In these patients, TP-S occurred within two weeks and TP-F within few days before death. No specific characteristics of patients with TPs could be observed. This indicates the individual nature of the trajectory at end of life.
PURPOSE: Benefits of early palliative referral in oncology are well documented. Palliative care referral "triggers" may help identify patients for referral. Many triggers have been proposed, but are not commonly used. This study reviewed the timing of palliative care involvement for patients in a tertiary referral oncology hospital, and whether the use of a trigger tool prior to admission would have facilitated earlier referral.
METHODS: This was a retrospective cohort study of cancer patients who died during an unplanned admission between November 2014 and October 2015. A literature review identified seven palliative care referral tools which were included in this analysis, and compared by identifying common themes. Each tool was applied to patients by reviewing electronic patient records. Timing of palliative referral and whether patients met any triggers within 6 months before their terminal admission were assessed.
RESULTS: A total of 159 patients were identified. Forty-six percent were referred to palliative care prior to terminal admission. Application of 6 out of 7 trigger tools would have resulted in the majority of patients (up to 91.2%) referred to palliative care prior to admission. Most patients (52.2%) were referred only during their terminal admission. Patients known to palliative care before admission (N = 73) were reviewed quicker than those who were not (N = 86) (median (range) 1 day (0-23 days) versus 5 days (0-59 days), p < 0.00001).
CONCLUSIONS: In this patient cohort, a palliative referral trigger tool may have proactively identified most patients prior to their terminal admission. Prospective testing of trigger tools in oncology populations is warranted.
PURPOSE: To evaluate a screening tool for identifying which patients admitted to the oncology ward of a Vietnamese hospital should be referred to specialist palliative care (PC).
METHODS: We performed a cross-sectional survey of consecutive patients hospitalized in the Department of Oncology and Palliative Care at Hanoi Medical University Hospital between June 2019 and September 2019. We translated a validated 11-item screening tool into Vietnamese and used a total score of = 5 as a positive screen.
RESULTS: One hundred participants were recruited. Forty-four patients (44%) screened positive. Of these, 37 (84%) had locally advanced or metastatic disease, 31 (70%) had uncontrolled symptoms, and 43 (98%) requested a PC consultation. A score = 5 was significantly more common in patients with stage IV disease versus earlier stage, performance status of Eastern Cooperative Oncology Group (ECOG) 2 versus ECOG 0, and when life-limiting complications of cancer were present. Screening identified four patients overlooked by oncologists as needing referral, and 34% of patients requesting a referral had scores < 5.
CONCLUSION: This screening tool provided oncologists with easy-to-use criteria for referring patients for PC. At the same time, it relieved the work load for under-resourced PC physicians by screening out requests with low-level need. This tool should be part of routine assessment on admission in all oncology units in Vietnam.
OBJECTIVE: This review will explore definitions of early palliative care and describe how it has been implemented for those diagnosed with a life-limiting chronic illness.
INTRODUCTION: People with life-limiting chronic illnesses who receive palliative care interventions have increased quality of life, better symptom management, and are more likely to have advance care plans than patients who do not. It is therefore best practice to encourage early identification of those in need of palliative care services. However, there is uncertainty over what is considered to be "early palliative care" and this presents a barrier to evaluating outcomes associated with it.
INCLUSION CRITERIA: All literature that defines an early palliative care approach in adults (aged 18+) with a life-limiting chronic illness will be included in this review.
METHODS: This scoping review will be completed using the JBI scoping review methodology. A comprehensive search of academic and gray literature using MEDLINE (Ovid), CINAHL (EBSCO), Embase (Ovid), PsycINFO (Ovid), Web of Science Core Collection, Ovid Cochrane Library, and ProQuest (Health and Medicine and Sociology Collections) will be utilized. Once screened by two reviewers, results will be extracted using a customized tool and summarized into a final report using a narrative synthesis presented in table form.
BACKGROUND: As part of a broader study to improve the capacity for advance care planning (ACP) in primary healthcare settings, the research team set out to develop and validate a computerized algorithm to help primary care physicians identify individuals at risk of death, and also carried out focus groups and interviews with relevant stakeholder groups. Interviews with patients and family caregivers were carried out in parallel to algorithm development and validation to examine (1) views on early identification of individuals at risk of deteriorating health or dying; (2) views on the use of a computerized algorithm for early identification; and (3) preferences and challenges for ACP.
METHODS: Fourteen participants were recruited from two Canadian provinces. Participants included individuals aged 65 and older with declining health and self-identified caregivers of individuals aged 65 and older with declining health. Semi-structured interviews were conducted via telephone. A qualitative descriptive analytic approach was employed, which focused on summarizing and describing the informational contents of the data.
RESULTS: Participants supported the early identification of patients at risk of deteriorating health or dying. Early identification was viewed as conducive to planning not only for death, but for the remainder of life. Participants were also supportive of the use of a computerized algorithm to assist with early identification, although limitations were recognized. While participants felt that having family physicians assume responsibility for early identification and ACP was appropriate, questions arose around feasibility, including whether family physicians have sufficient time for ACP. Preferences related to the content of and approach to ACP discussions were highly individualized. Required supports during ACP include informational and emotional supports.
CONCLUSIONS: This work supports the role of primary care providers in the early identification of individuals at risk of deteriorating health or death and the process of ACP. To improve ACP capacity in primary healthcare settings, compensation systems for primary care providers should be adjusted to ensure appropriate compensation and to accommodate longer ACP appointments. Additional resources and more established links to community organizations and services will also be required to facilitate referrals to relevant community services as part of the ACP process.
BACKGROUND: Palliative needs in older patients are often not timely identified. The Surprise Question (SQ) 'would I be surprised if this patient died in the next year?' is a well-researched tool that could aid in this effort. Most studies thus far involved physicians or specialist nurses, however the predictive value of the SQ when used by general nurses caring for hospitalized older patients is unknown.
OBJECTIVES: To assess the predictive value of the SQ when used by general nurses and student nurses, in determining one year mortality in acutely hospitalized older patients.
DESIGN: Observational cohort study with an one year follow-up.
SETTING: One academic and one regional hospital in the Netherlands.
PARTICIPANTS: Patients >=70 years acutely hospitalized for at least 48 hours.
METHODS: Registered nurses and student nurses answered the SQ with 'No' (a positive SQ), 'Yes' or 'Don't know'. Data on student nurses was analysed separately. The sensitivity, specificity, negative- and positive predictive values were calculated. Furthermore, logistic regression was performed to determine the odds of death.
RESULTS: 66 registered nurses answered the SQ for 252 patients of whom 77 (30.6%) died in the year after inclusion. Respectively, 44%, 14% and 22% died within the 'No', 'Yes' and 'Don't know' group. 85% of patients who died during admission or in the first three months post-discharge were identified. The sensitivity and specificity were 76.7% and 56.6%. The positive and negative predictive values were 43.7% and 84.6 %. Compared to persons in whom the SQ was answered with yes, a no answer was associated with an 4.7 times increased odds of dying in the next 12 months (odds ratio 4.71, 95% CI 2.43-9.12, p<0.001). Additionally, 20 student nurses answered the SQ about 73 patients; sensitivity and specificity were 46.7% and 72.1%, with a positive and negative predictive value of 53.8% and 66.0% respectively.
CONCLUSION: The usability of the Surprise Question in predicting 12-month mortality in older acutely admitted patients is limited, due to the high false positive rate. The SQ when used by non-specialized nurses identifies vulnerable patients with an increased mortality risk and can be used as a first step in assessing a patients' palliative needs, but has limited use as a single criterion for referral to specialist palliative care.
Background: Despite increasing evidence of the benefits of early access to palliative care, many patients do not receive palliative care in a timely manner. A systematic approach in primary care can facilitate earlier identification of patients with potential palliative care needs and prompt further assessment.
Aim: To identify existing screening tools for identification of patients with advanced progressive diseases who are likely to have palliative care needs in primary healthcare and evaluate their accuracy.
Design: Systematic review (PROSPERO registration number CRD42019111568).
Data sources: Cochrane, MEDLINE, Embase and CINAHL were searched from inception to March 2019
Results: From 4,127 unique articles screened, 25 reported the use or development of 10 screening tools. Most tools use prediction of death and/or deterioration as a proxy for the identification of people with potential palliative care needs. The tools are based on a wide range of general and disease-specific indicators. The accuracy of five tools was assessed in eight studies; these tools differed significantly in their ability to identify patients with potential palliative care needs with sensitivity ranging from 3% to 94% and specificity ranging from 26% to 99%.
Conclusion: The ability of current screening tools to identify patients with advanced progressive diseases who are likely to have palliative care needs in primary care is limited. Further research is needed to identify standardised screening processes that are based not only on predicting mortality and deterioration but also on anticipating the palliative care needs and predicting the rate and course of functional decline. This would prompt a comprehensive assessment to identify and meet their needs on time.
Background: Access to specialty palliative care delivery in the intensive care unit is inconsistent across institutions. The intensive care unit at the study institution uses a screening tool to identify patients likely to benefit from specialty palliative care, yet little is known about outcomes associated with the use of screening tools.
Objective: To identify outcomes associated with specialty palliative care referral among patients with critical illness.
Methods: Records of 112 patients with positive results on palliative care screening were retrospectively reviewed to compare outcomes between patients who received a specialty palliative care consult and those who did not. Primary outcome measures were length of stay, discharge disposition, and escalation of care.
Results: Sixty-five patients (58%) did not receive a palliative care consult. No significant differences were found in length of hospital or intensive care unit stay. Most patients who experienced mechanical ventilation did not receive a palliative care consultation ( 2 = 5.14, P = .02). Patients who were discharged to home were also less likely to receive a consult ( 2 = 4.1, P = .04), whereas patients who were discharged to hospice were more likely to receive a consult ( 2 = 19.39, P < .001).
Conclusions: Unmet needs exist for specialty palliative care. Understanding the methods of identifying patients for specialty palliative care and providing them with such care is critically important. Future research is needed to elucidate the factors providers use in their decisions to order or defer specialty palliative care consultation.
Background: Advance care plans (ACP) provide patients the opportunity to communicate their goals and wishes for future care.
Local problem: A retrospective case note review of 50 inpatient deaths in 2017 confirmed a doctor had discussed expected death in 90%, however only 2% had an ACP.
Methods: Patients appropriate for ACP were identified on a single geriatrics ward. Interventions were implemented with monthly data collection. Patients with an ACP were followed prospectively. The initiatives were subsequently applied across six geriatrics wards.
Interventions: Interventions included improved identification of patients appropriate for ACP, doctor education and improved communication to general practitioners and healthcare providers.
Results: Before initiation of interventions on the pilot ward, ACP was completed for 38% of appropriate patients; this increased to a mean of 78.6% over 4 months post-interventions. During the pilot, 44 patients had an ACP. Of those discharged, 75% avoided readmission over the following 6 months. After applying the interventions across all geriatric wards, ACPs increased to a mean of 81.2% and was maintained 12 months later at 72%.
Conclusions: The initiatives formed a structure to promote the use of ACP on the wards. Care plans focused on individualising care and effective communication resulted in reduction of readmissions.
In the setting of the coronavirus disease 2019 (COVID-19) pandemic, new strategies are needed to address the unique and significant palliative care (PC) needs of patients with COVID-19 and their families, particularly when health systems are stressed by patient surges. Many PC teams rely on referral-based consultation methods that can result in needs going unidentified and/or unmet. Here, we describe a novel system to proactively identify and meet the PC needs of all patients with COVID-19 being cared for in our hospital's intensive care units. Patients were screened through a combination of chart review and brief provider interview, and PC consultations were provided via telemedicine for those with unmet needs identified. In the first six weeks of operation, our pilot program of proactive screening and outreach resulted in PC consultation for 12 of the 29 (41%) adult patients admitted to the intensive care unit with COVID-19 at our institution. Consultations were most commonly for patient and family support as well as for goals of care and advance care planning, consistent with identified PC needs within this unique patient population.
Background: Difficulties in identifying patients at risk of clinical deterioration or death represent one of the main barriers to Palliative Care (PC) development in the community. Currently, no specific Italian tools aimed at identifying patients with PC needs are available. Of the different European tools available, the SPICT™ can be used easily in any kind of setting and does not include the Surprise Question. The purpose of the study was to translate, cross-culturally adapt and pre-test the Italian version of the SPICT™.
Methods: The Beaton recommendations for the cross-cultural adaptation of instruments were followed. Content validity was assessed using the Lynn method. A sample of Italian General Practitioners (GPs) assessed the SPICT-IT™ for feasibility and tested it.
Results: During the cross-cultural adaptation, some issues regarding semantic, experiential, idiomatic and conceptual equivalences were raised and resolved. The Scale-Content Validity Index/Ave was 0.86. Of the 907 GPs included in the sample, 71 (7.8%) agreed to test the SPICT-IT™ and to assess its feasibility. The participants provided care for 73,526 people in the community. Of these people, 1.7% (N = 1303) were identified as being in need of PC according to the SPICT-IT™. Sixty-six (93.0%) GPs stated they would use the SPICT-IT™ in their daily clinical practice.
Conclusions: The SPICT-IT™ demonstrated acceptable content validity. The percentage of patients identified through the SPICT-IT™ was comparable to findings from literature. The next phase of this project will investigate the impact of a proactive training programme aimed at supporting GPs in identifying patients with PC needs and delivering appropriate Primary Palliative Care (PPC).
Objective: The ‘surprise question’ (SQ) and the palliative care screening tool (PCST) are the common assessment tools in the early identification of patients requiring palliative care. However, the comparison of their prognostic accuracies has not been extensively studied. This study aimed to compare the prognostic accuracy of SQ and PCST in terms of recognising patients nearing end of life (EOL) and those appropriate for palliative care.
Methods: This prospective study used both the SQ and PCST to predict patients’ 12-month mortality and identified those appropriate for palliative care. All adult patients admitted to Taipei City Hospital in 2015 were included in this cohort study. The c-statistic value was calculated to indicate the predictive accuracies of the SQ and PCST.
Results: Out of 21 109 patients, with a mean age of 62.8 years, 12.4% and 11.1% had a SQ response of ‘no’ and a PCST score of =4, respectively. After controlling for other covariates, an SQ response of ‘no’ and a PCST score of =4 were the independent predictors of 12-month mortality. The c-statistic values of the SQ and PCST at recognising patients in their last year of life were 0.680 and 0.689, respectively. When using a combination of both SQ and PCST in predicting patients’ 12-month mortality risk, the predictive value of the c-statistic increased to 0.739 and was significantly higher than either one in isolation (p<0.001).
Conclusion: A combination of the SQ with PCST has better prognostic accuracy than either one in isolation.
Introduction: The mortality of patients with neck-of-femur (NOF) fractures remains high, with increasing recognition of a subgroup of patients with predictable mortality. The role of palliative care in this group is poorly understood and underdeveloped. This research aims to investigate current clinician attitudes toward palliative care for patients with NOF fracture, and explore processes in place for early identification for patients nearing the end of life.
Materials and Methods: An online survey was constructed with reference to National Institute for Health and Clinical Excellence end-of-life guidelines (CG13) and distributed to multidisciplinary teams involved in the care of NOF fracture patients in 4 hospitals of contrasting size and location in the United Kingdom.
Results: Forty health-care professionals with a broad range of seniority and roles responded. The palliative care team was felt to have several potential roles in the care of NOF fracture patients, but there was difference of opinion between specialties about what these were. A number of barriers to palliative referral were identified, including stigma and active surgical management. The majority (75%) felt that all NOF fracture patients should have a discussion about ceiling of care, with difference of opinion about who should do so, and when.
Discussion: As the elderly population has grown, so too has the volume of NOF fracture patients. It is increasingly important to identify and escalate patients who have poor prognosis following hip fracture and ensure they benefit from palliative care where appropriate. This survey demonstrates a barrier to addressing the care of these patients and a lack of consensus on identification and referral to appropriate palliative care planning.
Conclusions: There should be close communication between specialties with regard to requirements for palliative care in NOF fracture patients, with ongoing education and clear local and national guidance to ensure they receive the right care at the right time.
Context: The COVID-19 pandemic is spreading across the world. Many patients will not be suitable for mechanical ventilation owing to the underlying health conditions, and they will require a conservative approach including palliative care management for their important symptom burden.
Objectives: To develop a management plan for patients who are not suitable for mechanical ventilation that is tailored to the stage their COVID-19 disease.
Methods: Patients were identified as being stable, unstable, or at the end of life using the early warning parameters for COVID-19. Furthermore, a COVID-19–specific assessment tool was developed locally, focusing on key symptoms observed in this population which assess dyspnoea, distress, and discomfort. This tool helped to guide the palliative care management as per patients' disease stage.
Results: A management plan for all patients' (stable, unstable, end of life) was created and implemented in acute hospitals. Medication guidelines were based on the limitations in resources and availability of drugs. Staff members who were unfamiliar with palliative care required simple, clear instructions to follow including medications for key symptoms such as dyspnoea, distress, fever, and discomfort. Nursing interventions and family involvement were adapted as per patients' disease stage and infection control requirements.
Conclusion: Palliative care during the COVID-19 pandemic needs to adapt to an emergency style of palliative care as patients can deteriorate rapidly and require quick decisions and clear treatment plans. These need to be easily followed up by generalist staff members caring for these patients. Furthermore, palliative care should be at the forefront to help make the best decisions, give care to families, and offer spiritual support.
Background: General practitioners’ (GPs) play a central role in facilitating end-of-life discussions with older patients nearing the end-of-life. However, prognostic uncertainty of time to death is one important barrier to initiation of these discussions.
Objective: To explore GPs’ perceptions of the feasibility and acceptability of a risk prediction checklist to identify older patients in their last 12 months of life and describe perceived barriers and facilitators for implementing end-of-life planning.
Methods: Qualitative, semi-structured interviews were conducted with 15 GPs practising in metropolitan locations in New South Wales and Queensland between May and June 2019. Data were analysed thematically.
Results: Eight themes emerged: accessibility and implementation of the checklist, uncertainty around checklist’s accuracy and usefulness, time of the checklist, checklist as a potential prompt for end-of-life conversations, end-of-life conversations not an easy topic, end-of-life conversation requires time and effort, uncertainty in identifying end-of-life patients and limited community literacy on end-of-life. Most participants welcomed a risk prediction checklist in routine practice if assured of its accuracy in identifying which patients were nearing end-of-life.
Conclusions: Most participating GPs saw the value in risk assessment and end-of-life planning. Many emphasized the need for appropriate support, tools and funding for prognostic screening and end-of-life planning for this to become routine in general practice. Well validated risk prediction tools are needed to increase clinician confidence in identifying risk of death to support end-of-life care planning.
La souffrance est une entité universelle, multidimensionnelle, mais aussi unique et personnelle, paradoxalement sous-diagnostiquée, alors qu’elle est omniprésente dans notre pratique en milieu hospitalier. Le but de cet article est de proposer au lecteur quelques pistes pour l’exploration et l’identification de la souffrance des proches de patients en situation palliative, et surtout quelques outils d’accompagnement et de soutien.
Context: The COVID-19 pandemic created a rapid and unprecedented shift in our medical system. Medical providers, teams, and organizations have needed to shift their visits away from face-to-face visits and toward telehealth (both by phone and through video). Palliative care teams who practice in the community setting are faced with a difficult task: How do we actively triage the most urgent visits while keeping our vulnerable patients safe from the pandemic?
Measures: The following are recommendations created by the Palo Alto Medical Foundation Palliative Care and Support Services team to help triage and coordinate for timely, safe, and effective palliative care in the community and outpatient setting during the ongoing COVID-19 pandemic. Patients are initially triaged based on location followed by acuity. Interdisciplinary care is implemented using strict infection control guidelines in the setting of limited personal protective equipment (PPE) resources. We implement thorough screening for COVID-19 symptoms at multiple levels before a patient is seen by a designated provider.
Conclusions/Lessons Learned: We recommend active triaging, communication, frequent screening for COVID-19 symptoms for palliative care patients been evaluated in the community setting. An understanding of infection risk, mutual consent between designated providers, patients, and their families are crucial to maintaining safety while delivering community-based palliative care during the COVID-19 pandemic.
The Covid-19 pandemic has led to severe shortages of many essential goods and services, from hand sanitizers and N-95 masks to ICU beds and ventilators. Although rationing is not unprecedented, never before has the American public been faced with the prospect of having to ration medical goods and services on this scale.
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