Background: New Orleans, Louisiana served as a central location for a surge of novel coronavirus cases during the months of March 2020 to May 2020. To provide guidance to palliative care teams naive to the palliative care demand associated with a surge of coronavirus cases, we document our protocol to best optimize palliative care resources. This report aims to present this information and reflect upon what was most beneficial/least beneficial to serve as a roadmap for palliative teams facing this pandemic.
Objective: To pilot a team-based structured protocol to categorize severity of COVID-19 intensive care unit (ICU) admissions and subsequently collaborate with the palliative interdisciplinary team to assess physical, spiritual, and psychosocial needs.
Design: New ICU consults were categorized into color-coded clinical severity "pots" during daily ICU interdisciplinary rounds. Clinical decision making and communication with patient/next of kin were based on "pot" classification.
Settings/Subjects: Palliative medicine consults were placed on all COVID-19 positive patients admitted to the ICU between March 29, 2020, and May 1, 2020.
Measurements: A retrospective chart review was performed to analyze the effect of palliative care consultation on completion of goals-of-care conversations and the life-sustaining treatment (LST) document, an advance directive form specific to the Veterans Affairs hospital system between March 29, 2020 and May 1, 2020.
Results: Of the palliative consults evaluated by a palliative provider, 74% resulted in completion of a LST document, 58% resulted in video contact with family members, and 100% incorporated a goals-of-care discussion.
Conclusions: We found that standardizing palliative care consultation on all COVID-19 positive ICU admissions subjectively alleviated the burden on ICU providers and staff in the midst of a crisis, resulted in increased documentation of patient goals-of-care preferences/LSTs, facilitated clinical updates to family members, and better distributed clinical burden among palliative team members.
BACKGROUND: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs.
PURPOSE: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life.
METHOD: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted.
RESULTS: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%).
CONCLUSIONS: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.
Background: Intellectual and Developmental Disabilities (IDD) are defined as physical/mental impairments before age 18. Not only are many IDD patients living into adulthood, but deinstitutionalization has also led to most living in community settings. Little is known about end-of-life needs in these adults, and existing literature does not examine attitudes of Canadian providers.
Objective: Thematic and content analysis examined attitudes of Canadian Pediatric Palliative Care (PPC) practitioners on caring for adults with IDD to identify components of care, which could be improved.
Design: An anonymized survey was created (Surveymonkey.com) using open-ended and Likert-scale questions, with thematic/subthematic coding on NVivo11. Initial coding included a codebook, which was refined. Independent coding was compared with initial coding. Coded data were reanalyzed after demographic stratification, results discussed, and consensus reached.
Settings/Subjects: All Canadian PPC centers responded through snowball sampling (25 of 36 [70%] practitioners).
Measurements/Results: Major themes covered communication and decision making, lack of resources (including access to appropriate services), and knowledge/skill/experience gaps among adult palliative care and generalist practitioners. Gaps included complex medical conditions of IDD patients, trajectories, and related management. Knowledge ratings of adult palliative care and generalist practitioners by respondents were evenly distributed, but only pediatricians gave ratings of poor or worse. PPC practitioners are comfortable being consulted by adult palliative care and generalist colleagues. However, frequency of consults varied dramatically, from one to two times/month in British Columbia to never.
Conclusions: PPC practitioners across Canada identified several major issues and barriers to optimal palliative care for adults with IDD.
Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.
PURPOSE: Monitoring and improving the quality of palliative and end-of-life cancer care remain pressing needs in the United States. Among existing measures that assess the quality of palliative and end-of-life care, many operationalize similar concepts. We identified existing palliative care process measures and synthesized these measures to aid stakeholder prioritization that will facilitate health system implementation in patients with advanced cancer.
METHODS: We reviewed MEDLINE/PubMed-indexed articles for process quality measures related to palliative and end-of-life care for patients with advanced cancer, supplemented by expert input. Measures were inductively grouped into "measure concepts" and higher-level groups.
RESULTS: Literature review identified 226 unique measures from 23 measure sources, which we grouped into 64 measure concepts within 12 groups. Groups were advance care planning (11 measure concepts), pain (7), dyspnea (9), palliative care-specific issues (6), other specific symptoms (17), comprehensive assessment (2), symptom assessment (1), hospice/palliative care referral (1), spiritual care (2), mental health (5), information provision (2), and culturally appropriate care (1).
CONCLUSION: Measure concepts covered the spectrum of care from acute symptom management to advance care planning and psychosocial needs, with variability in the number of measure concepts per group. This taxonomy of process quality measure concepts can be used by health systems seeking stakeholder input to prioritize targets for improving palliative and end-of-life care quality in patients with advanced cancer.
Objectives: To examine palliative care needs of advanced cancer patients and their informal caregivers and correlates of their needs within Chinese context.
Methods: This was a cross-sectional survey conducted in two study sites in Mainland China. Patients and caregivers were recruited in dyads. Patients completed the following questionnaires: Problems and Needs in Palliative Care-short version, Hospital Anxiety and Depression Scale (HADS), Edmonton Symptom Assessment Scale (ESAS), Medical Outcomes Study-Social Support Survey (MOS-SSS), Brief Coping Orientation to Problems Experienced Scale (Brief-COPE), and Quality-of-Life Questionnaire Core 15-Palliative Care Scale. Questionnaires for caregivers were as follows: Comprehensive Needs Assessment Tool in Cancer for Caregivers, HADS, ESAS, MOS-SSS, Brief-COPE, and Caregiver Quality of Life Index-Cancer. All of the outcome variables were selected based on a conceptual framework of palliative care needs assessment.
Results: Four hundred nineteen patient-caregiver dyads completed this survey. Patients’ unmet palliative care needs were mainly related to financial (85.2%), informational (82.3%), physical (pain) (69.7%), and psychological (64.9%) domains. Caregivers’ commonly reported unmet needs mainly focused on the domains of healthcare staff (95.0%), information (92.1%), and hospital facilities and services (90.5%). Patients’ greater severity of symptom distress, presence of anxiety and/or depression, use of coping strategies particularly the less use of problem-focused coping, and caregivers’ poorer quality of life were identified as key negative predictors of the needs of both patients and caregivers (p < 0.05).
Conclusions: Both patients and caregivers had context-bounded palliative care needs. In addition to increasing the amount of external asistance, more emphasis should be placed on screening for physical and psychological distress, the use of coping strategies, and the well-being of caregivers to help identify those in need for more clinical attention and specific interventions.
CONTEXT: In palliative care, caregivers often lack words and competences to discuss patients' needs in the social and spiritual dimensions. The Utrecht Symptom Diary - 4 Dimensional (USD-4D) is an instrument that can be used to monitor symptoms and needs in the physical, psychological, social and spiritual dimensions and to optimize communication between patients and caregivers.
OBJECTIVE: To assess the content validity of the USD-4D items related to the social and spiritual dimensions from a patient's perspective, measured in terms of comprehensibility, relevance and comprehensiveness.
METHODS: An explorative qualitative study was conducted using in-depth semi-structured interviews and thematic analysis. Twelve participants (male N=7, 53-87 years old) with an estimated life expectancy of < 1 year were recruited in two home care services , a general hospital and a hospice.
RESULTS: The instructions, items and response options were comprehensible for almost all participants. The meaning that was provided to the items was expressed in themes: maintaining personal identity and autonomy, resilience, letting go, perceived balance in one's life and death and afterlife. This corresponds with the intended meaning. The items were relevant at some points in time. Not all participants had needs for personal care during the interviews. Participants found the USD-4D comprehensive, no key concepts related to the social or spiritual dimensions appeared to be missing.
CONCLUSIONS: The USD-4D constitutes a content valid PROM from the patient's perspective. The items support patients' in identifying needs in the social and spiritual dimensions and in the conversation to further explore these needs.
In order to plan the right palliative care for patients and their families, it is essential to have detailed information about patients' needs. To gain insight into these needs, we analyzed five Italian local palliative care networks and assessed the clinical care conditions of patients facing the complexities of advanced and chronic disease. A longitudinal, observational, noninterventional study was carried out in five Italian regions from May 2017 to November 2018. Patients who accessed the palliative care networks were monitored for 12 months. Sociodemographic, clinical, and symptom information was collected with several tools, including the Necesidades Paliativas CCOMS-ICO (NECPAL) tool, the Edmonton Symptom Assessment System (ESAS), and interRAI Palliative Care (interRAI-PC). There were 1013 patients in the study. The majority (51.7%) were recruited at home palliative care units. Cancer was the most frequent diagnosis (85.4%), and most patients had at least one comorbidity (58.8%). Cancer patients reported emotional stress with severe symptoms (38.7% vs. 24.3% in noncancer patients; p = 0.001) and were less likely to have clinical frailty (13.3% vs. 43.9%; p < 0.001). Our study confirms that many patients face the last few months of life with comorbidities or extreme frailty. This study contributes to increasing the general knowledge on palliative care needs in a high-income country.
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.
OBJECTIVES: This is the second of a 2-part article that discusses essential case management practices and strategies amidst the novel coronavirus disease 2019 (COVID-19). The series showcases the potential professional case managers have in support of managing during a crisis such as a global pandemic. Part II continues to describe reenvisioned roles and responsibilities of case managers and their leaders to meet the needs of patients/support systems during the crisis. It focuses on the increased need for end-of-life care, impact on workers' compensation case management practice, and the self-care needs of the professional case manager.
PRIMARY PRACTICE SETTINGS: Applicable to the various case management practice settings across the continuum of health and human services, with special focus on acute care.
FINDINGS/CONCLUSIONS: The COVID-19 global pandemic has resulted in a crisis case managers and other health care professionals never faced something like it before. At the same time, it has provided opportunities for innovation and creativity including use of digital and telecommunication technology in new ways to ensure the continued delivery of health and human services to those who need them regardless of location. It has also resulted in the development of necessary and impactful partnerships within and across different health care organizations and diverse professional disciplines. Most importantly, this pandemic has required special attention to the increased need of patients for timely palliative and end-of-life care. In addition, it has prompted a focus on the safety, health, and well-being of case managers and other health care professionals, resulting in expanded workers' compensation case management practice coupled with the need for self-care and resilience.
IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: Professional case managers are integral members of interprofessional health care teams. Their roles and responsibilities are even more necessary during the uncertainty of a global pandemic such as COVID-19. So far, the experience of this crisis has resulted in a deliberate need to ensure the safety of both, those who are the recipients of health care services and those who are responsible for the provision of care. Self-care and resilience of health care professionals and case managers, especially due to the complex dynamics of the COVID-19 pandemic, have advanced a desirable and necessary view of remote/virtual practice and as a strategy for enhancing the person's health and well-being. This pandemic has forced the development of impactful partnerships and collaborations among the diverse contexts of health care organizations and support service providers. These contexts of care delivery have also emphasized the necessary legal and ethical practice of case managers and the other involved parties. Experts agree that the innovative care delivery methods practiced during the pandemic will undoubtedly remain as desirable beyond the current crisis period.
OBJECTIVES: To estimate past trends and future projection of adult palliative care needs in Malaysia.
METHODS: This is a population-based secondary data analysis using the national mortality registry from 2004 to 2014. Past trend estimation was conducted using Murtagh's minimum and maximum methods and Gómez-Batiste's method. The estimated palliative care needs were stratified by age groups, gender and administrative states in Malaysia. With this, the projection of palliative care needs up to 2030 was conducted under the assumption that annual change remains constant.
RESULTS: The palliative care needs in Malaysia followed an apparent upward trend over the years regardless of the estimation methods. Murtagh's minimum estimation method showed that palliative care needs grew 40% from 71 675 cases in 2004 to 100 034 cases in 2014. The proportion of palliative care needs in relation to deaths hovered at 71% in the observed years. In 2030, Malaysia should anticipate the population needs to be at least 239 713 cases (240% growth from 2014), with the highest needs among age group = 80-year-old in both genders. Sarawak, Perak, Johor, Selangor and Kedah will become the top five Malaysian states with the highest number of needs in 2030.
CONCLUSION: The need for palliative care in Malaysia will continue to rise and surpass its service provision. This trend demands a stepped-up provision from the national health system with advanced integration of palliative care services to narrow the gap between needs and supply.
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: The impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers’ burdens can be increased due to the patients’ unmet needs and unresolved problems. Additionally, the caregivers’ unmet needs may adversely affect their own well-being and the patients’ health outcomes. This study aims to determine the palliative care needs and the factors associated with these needs in patients with advanced solid cancer and their FCs.
Methods: In a cross-sectional survey, 599 patients with advanced solid tumours and 599 FCs were recruited from the largest ambulatory cancer centre and the inpatient ward of the largest hospital in Singapore. Determinants of patients’ and FCs’ needs were assessed by the Comprehensive Needs Assessment Tool (CNAT) and CNAT-C respectively. Clinical characteristics of patients were obtained from medical records.
Results: The FCs (median age 51 years) were younger than the patients (median age 62 years), and were mostly female (62.6%) whereas the gender distribution of patients was quite balanced (49.2% male and 50.8% female). Both patients and FCs had “information” and “practical support” in their top three domains of palliative care needs. The second highest domain of needs was “psychological problems” (16.4 ± 21.5) in patients and “health-care staff” (23.4 ± 26.5) in FCs. The item that had the highest need score in “information” domain for both patients and FCs was “financial support for patients, either from government and/ or private organizations”. Under clinical setting, the inpatients (19.2 ± 16.4) and their FCs (26.0 ± 19.0) tend to have higher needs than the outpatients (10.5 ± 12.1) and their FCs (14.7 ± 14.3). In terms of palliative care, higher total CNAT score was observed in both patients (16.6 ± 12.9 versus 13.3 ± 15.2) and their FCs (25.1 ± 18.6 versus 17.7 ± 16.7) who received palliative care. In terms of patients’ KPS scores, patients with lower KPS scores tend to have higher needs.
Conclusion: Overall, the findings confirm that patients with advanced cancer and their FCs have many palliative care needs irrespective of their clinical settings. Initiatives and interventions for the development of a comprehensive support system for both patients with advanced cancer and their FCs are warranted and can be derived from these findings.
In the United States and other nations, palliative care is under-resourced and there are not enough specialists to consistently meet the needs of patients suffering from serious illness. Nonetheless, palliative care is an integral component of care in the intensive care unit (ICU), as the ICU is designed for patients with life-threatening illnesses. In general, palliative care needs are best met through a combination of specialty and primary palliative care and the ideal approach depends on setting and context. Palliative care needs have been magnified by the COVID-19 pandemic with the hospitalization of hundreds of thousands of patients with COVID-19, many requiring critical care. Furthermore, hospitals are required to limit family presence, further complicating our ability to address patients' palliative care needs.
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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: There is a growing emphasis on the importance of availability of specialist palliative care for people living with dementia. However, for people imminently dying with dementia, we still have little knowledge about their palliative care needs and utilization of different specialist services.
Objectives: To (i) assess palliative care needs and other clinical and social characteristics of people imminently dying with dementia on their last admission in the context of community and inpatient palliative care services before death; (ii) compare care needs between patients requiring community-based and inpatient services; (iii) determine how and whether such care needs affect utilization of different palliative care services.
Design: Observational study using data from the Australian Palliative Care Outcomes Collaboration.
Settings: Specialist palliative care services across Australia registered in the Palliative Care Outcomes Collaboration.
Participants: A total of 3361 people who required specialist palliative care principally for dementia (including Alzheimer's disease and other dementias), and whose death occurred between 1 January 2013 and 31 December 2018.
Methods: Five validated clinical instruments were used to collect point-of-care outcomes on each individual's function (Resource Utilisation Groups - Activities of Daily Living & Australia-modified Karnofsky Performance Status), symptom distress (Symptoms Assessment Scale & Palliative Care Problem Severity Score) and other clinical characteristics (Palliative Care Phases). We fitted multivariate logistic regression models to examine the association between these clinical outcomes and utilization of different specialist palliative care services.
Results: The majority of people imminently dying with dementia had absent or mild levels of symptom distress but experienced high levels of functional decline and needed substantial assistance with basic tasks of daily living in their last days of life. Large disparities in symptoms distress and functional decline between inpatient and community groups were not observed although differences in assessment scores were often statistically significant. Poor functional outcomes (odds ratio = 1.77, 95% confidence interval: 1.24–2.52) and “non-stable” palliative care phases (odds ratio =24.51, 95% confidence interval: 12.03–49.96) were positively associated with use of inpatient versus community palliative care, whereas there was no clear association between the majority of symptoms and use of different care services.
Conclusions: The majority of people imminently dying with dementia could potentially benefit from greater access to supportive services in the community. Development of a dementia-specific palliative care pathway is needed to promote needs-based palliative care delivery models.
Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence.
Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care.
Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974).
Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included.
Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom (n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support).
Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.
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.
Fibrotic interstitial lung disease (f-ILD) has a guarded prognosis, and the goal of therapy in advanced-stage disease should be symptom-based. Despite this, patients may still undergo burdensome investigation at the end of life. A retrospective audit was performed on 67 patients who died from f-ILD at the Royal Melbourne and Austin Hospitals between 2012 and 2016. Increased investigation burden was associated with lack of outpatient palliative care referral and documented advance care plan, and admission to a high-dependency unit. Eighteen per cent of patients underwent ongoing investigations after the institution of comfort care. These findings highlight the unmet end-of-life care needs of people with f-ILD.