Global Palliative Care News Archive

MEDIA WATCH, CREATED AND DISTRIBUTED BY BARRY R. ASHPOLE

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Barry R. Ashpole, Ontario, CANADA
BarryRAshpole@bell.net

MW 701:

Australia

Validation of the responding to urgency of need in palliative care (RUN-PC) triage tool

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An online survey of PC intake officers applying the RUN-PC Triage Tool to a series of 49 real clinical vignettes was assessed against a reference standard: a postal survey of expert PC clinicians ranking the same vignettes in order of urgency. The RUN-PC Triage Tool has good intra- and inter-rater reliability in inpatient, hospital consultation and community PC settings, and moderate to good correlation to expert opinion used as a reference standard. Abstract (w. list of references): view source »

Denmark

Maintaining control: A qualitative study of being a patient in need of specialized palliative care during the COVID-19 pandemic

PROGRESS IN PALLIATIVE CARE | Online – 18 January 2021 – Being a patient in need of specialized palliative care (PC) during the COVID-19 pandemic is challenging. Governments around the world have reduced the available healthcare services as well as restricted in-person meetings between patients, healthcare professionals (HCPs), and relatives. The aim of this study was to explore the experiences of patients with specialized PC needs during the period of restrictions requiring social distancing due to the COVID-19 pandemic. The analysis of this qualitative study was guided by a grounded theory approach. The participants were patients living in their own homes who were being treated by the outpatient clinic PC unit at the Herlev & Gentofte University Hospital in Denmark. Participants’ main concern was maintaining control during the pandemic. They achieved this by aiming to secure a meaningful life by remaining occupied during the day, balancing social contact, contemplating the reopening of society, and seeking help from HCPs. Participants were concerned about losing control and this concern increased with the reopening of society. HCPs must ensure that they provide support and care for patients with specialized PC needs when societal restrictions change. Full text: view source »

U.K. (England)

A national survey of ambulance paramedics on the identification of patients with end-of-life care needs

BRITISH PARAMEDIC JOURNAL, 2020;5(3):8-14. Developing the proactive identification of patients with end of life care (EoLC) needs within ambulance paramedic clinical practice may improve access to care for patients not benefitting from EoLC services at present. To inform development of this role, this study aimed to assess whether ambulance paramedics currently identify EoLC patients, are aware of identification guidance and believe this role is appropriate for their practice. Between 4 November 2019 and 5 January 2020, registered paramedics from nine English NHS ambulance service trusts were invited to complete an online questionnaire. The questionnaire initially explored current practice and awareness, employing multiple-choice questions. The Gold Standards Framework Proactive Identification Guidance (GSF PIG) was then presented as an example of EoLC assessment guidance, and further questions, permitting free text responses, explored attitudes towards performing this role. Most participants (79.9%) perceived that they attended a patient who was unrecognised as within the last year of life on at least a monthly basis. Despite 72.0% of paramedics indicating that they had previously made an EoLC referral to a General Practitioner, only 30.5% were familiar with the GSF PIG and of those only 25.9% had received training in its use. Participants overwhelmingly believed that they could and should perform this role, yet current barriers were identified as the inaccessibility of a patient’s medical records, inadequate EoLC education and communication difficulties. Consequently, facilitators to performing this role were identified as the provision of training in EoLC assessment guidance and establishing accessible, responsive EoLC referral pathways. Full text (click on pdf icon): view source »

MW 700:

The Netherlands

Timely identification of patients in need of palliative care using the Double Surprise Question: A prospective study on outpatients with cancer

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The Double Surprise Question performs better than the original Surprise Question alone when identifying patients with cancer at risk of dying during the next year. Adding the second Surprise Question makes it possible to divide the patients for whom the original Surprise Question is answered with "no" into two groups: a small group to focus proactive PC on, and a larger group to monitor less intensively. Thus, the Double Surprise Question can help professionals to carefully balance between the timely identification of more patients with cancer who have unmet PC needs, without over-burdening limited professional resources. However, more scientific evidence is needed to support this hypothesis. Further research should examine whether the application of the Double Surprise Question contributes to more timely PC. Additionally, future studies should validate the Double Surprise Question in different settings and different patient groups. Moreover, to minimize the risk of missing patients in need of PC, studies need to reveal how often the Double Surprise Question should be used as an identification tool. Finally, the authors recommend studying whether the Double Surprise Question is a cost-effective way to identify patients in need of PC. Full text: view source »

U.K. (Northern Ireland)

Challenges for palliative care day services: A focus group study

BMC PALLIATIVE CARE | Online – 12 January 2021 – Palliative care (PC) day services reflect the holistic nature of PC, in aiming to improve the quality of life of patients and their family caregivers complementing mainstream PC...1 The challenge is to recognise needs that may be addressed via day-services and then to refer patients immediately and integrate day-services into care plans early, even alongside other models of curative intent or life-prolonging treatment. The lack of standardisation of day services has resulted in variations in function, delivery, model of care and staffing, confirming previous research. Research indicates a lack of consensus on the model and variable outcome measures makes replication or application to specific patient groups challenging. Participants noted that the origins of day-service stemmed from a social model of care that has evolved to combine both social and medical services. The hybrid model was viewed as advantageous as it enabled patients' physical, and psychosocial needs to be met in line with the holistic nature of PC, so having the potential to reduce demand on other healthcare services. The lack of evidence about the impact of day services on patient outcomes makes it difficult to quantify such beneficial effects and indeed to understand the specific nature of the contribution of PC day services. There is a need for the model of day-service and the implications of this upon other services, to be investigated. Full text: view source »

1. 'The strengths and challenges of palliative day-care centers: Qualitative study with the professionals involved,' Journal of Palliative Care, published online 3 October 2017. [Noted in Media Watch 9 October 2017 (#533, p.13)] Abstract (w. list of references): view source »

U.K. (Scotland)

What makes palliative care needs "complex"? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

BMC PALLIATIVE CARE | Online – 15 January 2021 – Uncertainty around what complex needs are and ambivalence regarding the hospice services available are features of the current system. Despite this, the authors found that "complex needs," specifically multiple needs within and across domains, are recorded in hospice referrals, though detail is often lacking. Several steps could be taken to improve the consistency of referrals. Referrers may have a history with patients, and could draw more on this knowledge when documenting the reasons for referral to ensure that the patient and their family is directed to the service that best meets their needs. Greater consideration of the non-physical needs of patients is warranted. Across all domains, where appropriate, the use of standardised screening tools and performance measures … as a supplement to free-text information, could provide greater clarity and enable hospices to individualize services early on. Hospices could improve the referral process by ensuring that referrers are aware of the needs addressed by each available service. Palliative care (PC) specialists could offer training and support to GPs, community nurses, care-home nurses and other staff to reach all patients in need, especially those with non-malignant disease. Structured referral forms – now normal practice in all other specialties – could contain a section on PC provided prior to referral, clarifying what PC has already been offered, when and why the person is now being referred for hospice care. Hospices are increasingly under pressure to show their "worth" to commissioning groups through tangible outputs and impacts, which may contribute to a greater emphasis on more medical aspects of PC, which downplays the psychological, social and spiritual care provided. This may partly explain the emphasis on physical symptoms found in referral documentation. Clear communication on the interventions offered by hospices to address non-physical care needs is needed to ensure that referrers and commissioners understand the range of specialist PC services available, and how these can significantly improve quality of life for those with greatest need. Full text: view source »

MW 699:

Australia

Words describing feelings about death: A comparison of sentiment for self and others and changes over time

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A linguistic lexicon of sentiment norms was applied to activities conducted in an online course for the general-public designed to generate discussion about death. The authors analysed the sentiment of words people chose to describe feelings about death, for themselves, for perceptions of the feelings of "others," and for longitudinal changes over the time-period of exposure to a course about death. The results demonstrated that sadness pervades affective responses to death, and that inevitability, peace, and fear were also frequent reactions. However, words chosen to represent perceptions of others' feelings towards death suggested that participants perceived others as feeling more negative about death than they do themselves. Analysis of valence, arousal and dominance dimensions of sentiment pre-to-post course participation demonstrated that participants chose significantly happier (more positive) valence words, less arousing (calmer) words, and more dominant (in-control) words to express their feelings about death by the course end. This suggests that the course may have been helpful in participants becoming more emotionally accepting in their feelings and attitude towards death. Full text: view source »

The Netherlands

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in The Netherlands: A qualitative interview study

BMC PALLIATIVE CARE | Online – 6 January 2021 – Researchers play a key role in ensuring research demonstrates responsiveness to patients with a migration background and other underserved populations in order to obtain representative research findings and allow the development of an evidence base that can be used by service providers and policymakers to reduce disparities in palliative care (PC). Their efforts are affected by the interaction with research institutions, healthcare institutions and healthcare professionals. The authors' research suggests there are several ways to increase opportunities to improve responsiveness of PC through research. To address individual level factors they recommend training in responsiveness for researchers in the field of PC; to increase knowledge of patients with a migration background and other underserved populations in PC and familiarity with responsiveness measures. To address factors on the institutional level the authors also recommend training for healthcare professionals involved in PC research projects; to learn to address the topic of PC and increase enrolment of patients with a migration background and other underrepresented populations. Lastly, the authors encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice. Providing the opportunity for practical support helps researchers to get responsiveness of PC on the agenda and take action to address it. When such opportunities to improve responsiveness of research are utilized, research can help identify and understand determinants of disparities, identify and evaluate interventions to eliminate them and contribute to quality improvement and innovation of equitable PC, in which patients and families receive care according to their needs. Full text: view source »

U.S.

Ethical implications of COVID-19: Palliative care, public health, and long-term care facilities

JOURNAL OF HOSPICE & PALLIATIVE NURSING | Online – 6 January 2021 – Outbreaks of COVID-19 among nursing homes, assisted living facilities, and other long-term care facilities in the U.S. have had devastating effects on residents. Restrictions such as banning visitors, sequestering residents, and testing healthcare staff have been implemented to mitigate the spread of the virus. However, consequences include a decline in mental and physical health, decompensation, and a sense of hopelessness among residents. The authors present and explore a case study at an assisted living facility addressing the ethical issues in balancing the management of the community versus the resident's right to autonomy and self-determination. A team of palliative care (PC) experts was brought into assisted living facilities to manage patients, care for well residents, and provide input in advance care planning and symptom management. The principles of self-determination and autonomy, stewardship, and distributive justice were explored. The use of nursing skills in triage and assessment, principles in public health, and the 8 domains of PC provided a comprehensive framework for structuring emergency operations. Palliative interventions and the role of PC nurses played an integral part in addressing ethical challenges in the containment of the virus and the deleterious effects of social isolation among the elderly. Abstract: view source »

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