JournalTOCs

Palliative Medicine
Journal Prestige (SJR): 2.29

Citation Impact (citeScore): 4
Number of Followers: 54

Hybrid journal (It can contain Open Access articles)
ISSN (Print) 0269-2163 - ISSN (Online) 1477-030X
Published by Sage Publications

[1174 journals]

Opportunities for computational tools in palliative care: Supporting
patient needs and lowering burden
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  Authors: Brigitte N Durieux, Elise C Tarbi, Charlotta Lindvall
  Pages: 1168 - 1170
  Abstract: Palliative Medicine, Volume 36, Issue 8, Page 1168-1170, September 2022.
  
  Citation: Palliative Medicine
  PubDate: 2022-09-05T06:17:33Z
  DOI: 10.1177/02692163221122261
  Issue No: Vol. 36, No. 8 (2022)
‘Mum, I think we might ring the ambulance, okay'’ A qualitative
exploration of bereaved family members’ experiences of emergency
ambulance care at the end of life
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  Authors: Natalie Elizabeth Anderson, Jackie Robinson, Hetty Goodwin, Merryn Gott
  Abstract: Palliative Medicine, Ahead of Print.
  Background:In the context of a sudden or unexpected event, people with a life-limiting illness and their family caregivers may be dependent on emergency ambulance servicesAim:To explore bereaved family members’ experiences of emergency ambulance care at the end of life.Design:A qualitative study using reflexive thematic analysis of data collected from semi-structured phone interviews.Setting/Participants:A purposive sample of 38 family caregivers identified from a database of deaths in Aotearoa, New Zealand.Results:Emergency ambulance personnel assist, inform and reassure patients and family caregivers managing distressing symptoms, falls, infections, unexpected events and death itself. Family members and patients are aware of the pressure on emergency services and sometimes hesitate to call an ambulance. Associating ambulances with unwanted transport to hospital is also a source of reluctance.Conclusions:The generalist palliative care provided by emergency ambulance personnel is a vital service for patients in the last year of life, and their caregivers. This must be acknowledged in palliative care policy and supported with training, specialist consultation and adequate resources.
  Citation: Palliative Medicine
  PubDate: 2022-09-26T04:30:33Z
  DOI: 10.1177/02692163221118204
‘You can’t feel what we feel’: Multifaceted dyspnoea invisibility in
advanced chronic obstructive pulmonary disease examined through
interpretative phenomenological analysis
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  Authors: Laure Serresse, Antoine Guerder, Jonathan Dedonder, Nathalie Nion, Sophie Lavault, Capucine Morélot-Panzini, Jésus Gonzalez-Bermejo, Laelia Benoit, Thomas Similowski
  Abstract: Palliative Medicine, Ahead of Print.
  Background:More than a symptom, dyspnoea is an existential experience shaping the lives of those afflicted, particularly when its persistence despite maximal pathophysiological treatments makes it pervasive. It is, however, insufficiently appreciated by concerned people themselves, family members, healthcare professionals and the public (dyspnoea invisibility), limiting access to appropriate care and support.Aim:To provide a better understanding of dyspnoea experiences and its invisibility.Design:Interpretative phenomenological analysis of data collected prospectively through in-depth semi-structured interviews.Setting/Participants:Pulmonary rehabilitation facility of a tertiary care university hospital; 11 people (six men, five women) with severe chronic obstructive pulmonary disease (stages 3 and 4 of the 4-stage international GOLD classification) admitted for immediate post-exacerbation rehabilitation.Results:We identified several types of dyspnoea invisibility depending on temporality and interlocutors: (1) invisibility as a symptom to oneself; (2) invisibility as a symptom to others; (3) invisibility as an experience that cannot be shared; (4) invisibility as an experience detached from objective measurements; (5) invisibility as an experience that does not generate empathic concern. The notion of invisibility was present in all the identified experiential dimensions of dyspnoea. It was seen as worsening the burden of the disease and as self-aggravating through self-isolation and self-censorship.Conclusions:The study confirmed that dyspnoea invisibility is a reality for people with advanced chronic obstructive pulmonary disease. It shows dyspnoea invisibility to be a multifaceted burden. Future research should aim at identifying individual and collective measures to overcome dyspnoea invisibility.
  Citation: Palliative Medicine
  PubDate: 2022-09-26T04:28:24Z
  DOI: 10.1177/02692163221118198
“It was terrible, I didn’t sleep for two years”: A mixed methods
exploration of sleep and its effects among family caregivers of in-home
hospice patients at end-of-life
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  Authors: Lauren T Starr, Karla T Washington, Miranda V McPhillips, Kyle Pitzer, George Demiris, Debra Parker Oliver
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects.Aim:To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers’ wellbeing in the context of caregiver health and live-in status.Design:Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis.Setting/participants:About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews.Results:Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described “fair” or “poor” sleep quality, with “interrupted” sleep and frequent night-waking due to “on-call” “vigilance” and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p
  Citation: Palliative Medicine
  PubDate: 2022-09-24T05:01:30Z
  DOI: 10.1177/02692163221122956
The range and suitability of outcome measures used in the assessment of
palliative treatment for inoperable malignant bowel obstruction: A
systematic review
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  Authors: Alison Bravington, George Obita, Elin Baddeley, Miriam J Johnson, Fliss EM Murtagh, David C Currow, Elaine G Boland, Annmarie Nelson, Kathy Seddon, Alfred Oliver, Simon IR Noble, Jason W Boland
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Malignant bowel obstruction, a complication of certain advanced cancers, causes severe symptoms which profoundly affect quality of life. Clinical management remains complex, and outcome assessment is inconsistent.Aim:To identify outcomes evaluating palliative treatment for inoperable malignant bowel obstruction, as part of a four-phase study developing a core outcome set.Design:The review is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA); PROSPERO (ID: CRD42019150648). Eligible studies included at least one subgroup with obstruction below the ligament of Treitz undergoing palliative treatment for inoperable malignant bowel obstruction. Study quality was not assessed because the review does not evaluate efficacy.Data sources:Medline, Embase, the Cochrane Database, CINAHL, PSYCinfo Caresearch, Open Grey and BASE were searched for trials and observational studies in October 2021.Results:A total of 4769 studies were screened, 290 full texts retrieved and 80 (13,898 participants) included in a narrative synthesis; 343 outcomes were extracted verbatim and pooled into 90 unique terms across six domains: physiological, nutrition, life impact, resource use, mortality and survival. Prevalent outcomes included adverse events (78% of studies), survival (54%), symptom control (39%) and mortality (31%). Key individual symptoms assessed were vomiting (41% of studies), nausea (34%) and pain (33%); 19% of studies assessed quality of life.Conclusions:Assessment focuses on survival, complications and overall symptom control. There is a need for definitions of treatment ‘success’ that are meaningful to patients, a more consistent approach to symptom assessment, and greater consideration of how to measure wellbeing in this population.
  Citation: Palliative Medicine
  PubDate: 2022-09-22T05:01:04Z
  DOI: 10.1177/02692163221122352
Bureaucracy and burden: An Intersectionality-Based Policy Analysis of
social welfare policy with consequences for carers of people with
life-limiting illness
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  Authors: Kristin Bindley, Joanne Lewis, Joanne Travaglia, Michelle DiGiacomo
  Abstract: Palliative Medicine, Ahead of Print.
  Background:For informal carers of people with life-limiting illness, social welfare policy related to income support and housing has been associated with varied psychosocial issues, yet remains relatively under-explored. An intersectional approach offers potential to illuminate diverse experiences and implications.Aim:To explore the way in which caring in the context of life-limiting illness is framed within welfare policy, to articulate inequities encountered by carers, and to identify policy and practice recommendations.Design:The Intersectionality-Based Policy Analysis (IBPA) Framework was used to situate findings of a broader qualitative study.Setting/participants:Data were collected via semi-structured interviews with participants who were bereaved carers (n = 12), welfare workers (n = 14) and palliative care workers (n = 7), between November 2018 and April 2020, in an Australian region associated with socioeconomic disadvantage. Five elements of IBPA were applied to the products of analysis of this data.Results:Use of the IBPA Framework revealed that representations of carers and causes of their welfare needs in policy were underpinned by several assumptions; including that caring and grieving periods are temporary or brief, and that carers have adequate capacity to navigate complex systems. Policy and processes had differentiated consequences for carers, with those occupying certain social locations prone to accumulating disadvantage.Conclusions:This intersectional analysis establishes critical exploration of the framing and consequences of welfare policy for carers of people with life-limiting illness, presented in a novel conceptual model. Implications relate to intersectoral development of structural competency, responsiveness to structurally vulnerable carers in clinical practice, and needed policy changes.
  Citation: Palliative Medicine
  PubDate: 2022-09-17T05:04:16Z
  DOI: 10.1177/02692163221122289
A think-aloud study of the feasibility of patients with end-stage organ
failure completing the ICECAP-SCM
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  Authors: Henry Nwankwo, Joanna Coast, Alistair Hewison, Philip Kinghorn, Shyam Madathil, Cara Bailey
  Abstract: Palliative Medicine, Ahead of Print.
  Background:The ICECAP-Supportive Care Measure (SCM) is a self-complete measure developed to inform economic decision making at the end-of-life. Previous research has demonstrated its feasibility in hospice and nursing home settings. This is the first study of its use with patients on the organ failure trajectory.Aim:To determine the feasibility of using the ICECAP-SCM with patients experiencing end-stage organ failure in a hospital setting.Design:Participants were asked to ‘think aloud’ when completing the ICECAP-SCM, ICECAP-A and EQ-5D-5L measures. The interviews were transcribed verbatim and examined for errors in comprehension, retrieval, judgement, and response by five raters. Qualitative data were collected to explore reasons for errors in completing the measures and participants’ views about the measures.Setting/participants:Sixty patients (with end-stage renal failure n = 18; end-stage heart failure n = 21; end-stage chronic obstructive pulmonary disease n = 21) participated. Senior clinicians applied prognostic criteria to determine eligibility.Results:Participants reported that the measures were acceptable, clear, and easy to complete. Error rates in completing the measures were low (ICECAP-A = 3%,and ICECAP-SCM = 5.7% and EQ-5D-5L = 6.3%). There was some variation in responses between patients with different end-stage conditions, particularly those with symptom fluctuation. Some patients had not considered their end-of-life (i.e. advance care planning) and reported finding questions about this difficult to answer.Conclusion:It is feasible to use the ICECAP-SCM with patients with end-stage organ failure receiving care in hospital settings. This study provides evidence for researchers and policy makers involved in measuring end-of-life care globally. The ICECAP-SCM can be recommended for research with patients in end-stage organ failure to appropriately capture the broader benefits of end-of-life care.
  Citation: Palliative Medicine
  PubDate: 2022-09-17T04:45:08Z
  DOI: 10.1177/02692163221122979
Paracentesis for cancer-related ascites in palliative care: An
international, prospective cohort study
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  Authors: Davinia SE Seah, Andrew Wilcock, Sungwon Chang, Mariana S Sousa, Aynharan Sinnarajah, Cy Oun Teoh, Simon Allan, Richard Chye, Matthew Doogue, Jane Hunt, Meera Agar, David C Currow
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Paracentesis is commonly undertaken in patients with cancer-related ascites.Aim:To systematically investigate the symptomatic benefits and harms experienced by patients with cancer undergoing paracentesis using real-world data in the palliative care setting.Design:Prospective, multisite, observational, consecutive cohort study. Benefits and harms of paracentesis were assessed between 01/07/2018 and 31/02/2021 as part of routine clinical assessments by treating clinicians at four timepoints: (T0) before paracentesis; (T1) once drainage ceased; (T2) 24 h after T1 and (T3) 28 days after T1 or next paracentesis, if sooner.Setting/participants:Data were collected from 11 participating sites across five countries (Australia, England, Hong Kong, Malaysia and New Zealand) on 111 patients undergoing paracentesis via a temporary (73%) or indwelling (21%) catheter: 51% male, median age 69 years, Australia-modified Karnofsky Performance Score 50.Results:At T1 (n = 100), symptoms had improved for most patients (81%), specifically abdominal distension (61%), abdominal pain (49%) and nausea (27%), with two-thirds experiencing improvement in ⩾2 symptoms. In the remaining patients, symptoms were unchanged (7%) or worse (12%). At least one harm occurred in 32% of patients, the most common being an ascitic leak (n = 14). By T3, 89% of patients had experienced some benefit and 36% some harm, including four patients who experienced serious harm, one of which was a fatal bowel perforation.Conclusion:Most patients obtained rapid benefits from paracentesis. Harms were less frequent and generally mild, but occasionally serious and fatal. Our findings help inform clinician-patient discussions about the potential outcomes of paracentesis in this frail population.
  Citation: Palliative Medicine
  PubDate: 2022-09-16T05:32:10Z
  DOI: 10.1177/02692163221122326
Non-steroidal anti-inflammatory drugs (NSAIDs) in cancer pain: A database
analysis to determine recruitment feasibility for a clinical trial
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  Authors: Andrew J Page, Katie Spencer, Matthew R Mulvey, Barry JA Laird, Michael I Bennett
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Insufficient evidence exists to support or refute use of NSAIDs for managing cancer pain. Palliative physicians support a placebo-controlled trial of NSAIDs as strong opioid adjuncts for cancer-induced bone pain as the most pragmatic design to benefit clinical practice.Aim:We aimed to determine patient numbers receiving palliative radiotherapy for cancer-induced bone pain, estimate the suitability of NSAID prescription and determine survival, guiding future trial feasibility.Design:A retrospective observational database analysis was undertaken using 5 years of routinely collected regional radiotherapy and healthcare data, filtered to achieve a cohort with cancer-induced bone pain. Demographics and survival were linked to available serology and co-morbidity data.Setting/participants:Data was sourced from the regional Leeds Cancer Centre, a tertiary care setting. Patients who underwent palliative single fraction 8 gray (Gy) radiotherapy treatment for cancer-induced bone pain were included, totalling 2411 over 5 years.Results:A mean of 478 patients received palliative radiotherapy for cancer-induced bone pain annually. Median age (IQR) was 70 (62–77); negatively skewed (−0.69). 65.3% died within 1 year of radiotherapy; 48.0% within 6 months. Age was not associated with survival on univariable analysis (HR 0.999 (95% CI 0.996–1.003)). Serology from 1063 patients (44.2%) were available; eGFR was ⩾60 mL/min/1.73 m2 in 83.0%. From available data (1352 pts; 51.6% of sample), 20.2% had a coded co-morbidity contra-indicating NSAIDs. Combining serology and co-morbidities, 68.5% could be considered for NSAID prescription.Conclusions:Patient numbers at a regional radiotherapy centre support the feasibility of trial recruitment. Available serology and co-morbidity data suggest two-thirds may be suitable for NSAID prescription.
  Citation: Palliative Medicine
  PubDate: 2022-09-15T04:59:03Z
  DOI: 10.1177/02692163221122263
Cancer pain: Results of a prospective study on prognostic indicators of
pain intensity including pain syndromes assessment
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  Authors: Morena Shkodra, Cinzia Brunelli, Ernesto Zecca, Gabriele Infante, Rosalba Miceli, Mariangela Caputo, Paola Bracchi, Silvia Lo Dico, Stein Kaasa, Augusto Caraceni
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Pain is a prevalent symptom in patients with advanced cancer. Recognition of prognostic factors associated with pain intensity, could help provide better assessment, leading to better pain management.Aim:identifying prognostic factors which could guide improvements on cancer pain classification.Design:a prospective observational study on chronic cancer pain, exploring the association between average mean pain intensity during a 28 days study follow-up and patients’ clinical and pain-related characteristics, including pain syndromes. To evaluate these associations, a mixed model was built.Setting/participants:Patients attending a Palliative Care and Pain Outpatient Clinic from May 2015 to June 2019 were screened. Patients with moderate to severe cancer pain who were already receiving or needed treatment with third step WHO ladder opioids were enrolled in the study. Data from 342 patients with at least one follow-up visit were analyzed.Results:Pain intensity decreased significantly for all patients during time (p
  Citation: Palliative Medicine
  PubDate: 2022-09-15T04:51:48Z
  DOI: 10.1177/02692163221122354
The health of mothers of children with a life-limiting condition: A
qualitative interview study
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  Authors: Victoria Fisher, Karl Atkin, Lorna K Fraser
  Abstract: Palliative Medicine, Ahead of Print.
  Background:The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers’ perspectives.Aim:To explore mothers’ accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health.Design:Qualitative semi-structured interviews were conducted and analysed using thematic analysis.Setting/participants:Thirty mothers of children with a life-limiting condition were recruited via three UK children’s hospices and social media.Results:Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers’ reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child’s. Hospice support was particularly valuable in this respect.Conclusions:A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.
  Citation: Palliative Medicine
  PubDate: 2022-09-15T04:50:08Z
  DOI: 10.1177/02692163221122325
Strategies for recruiting the dependent children of patients with a
life-limiting illness as research participants
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  Authors: Steve Marshall, Pam Stephenson, Denice Sheehan
  Abstract: Palliative Medicine, Ahead of Print.
  Background:The voices of children and adolescents have historically been substituted by the perspective of adults. There is growing recognition that children (
  Citation: Palliative Medicine
  PubDate: 2022-09-15T04:46:09Z
  DOI: 10.1177/02692163221122302
A feasibility study of a decision aid to support family carers of people
with severe dementia or those towards the end-of-life
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  Authors: Nathan Davies, Narin Aker, Victoria Vickerstaff, Elizabeth L Sampson, Greta Rait
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Advance care planning in dementia does not always happen. As dementia progresses, decisions are often left for family carers to make with professionals.Aim:To test the feasibility and acceptability of the delivery and use of a decision aid for family carers of people with severe dementia or towards the end-of-life.Design:Feasibility study using a before-after design of a paper-based decision aid with family carers of people with severe dementia or towards the end-of-life. Criteria for whether to progress to full evaluation included achieving: 70% recruitment rate of target of 30 people, and retention of 70% at 6 months. Outcome measures at baseline, 3 and 6 months, included: the Decisional Conflict Scale (DCS), Kessler Psychological Distress Scale (K10), EQ5D-5L and Satisfaction with Care at the End of Life (SWC-EOLD).Participants:Twenty-eight family carers were recruited (93% of target), 26 completed baseline assessment and 20 (71%) of those were followed-up at 6 months.Results:Almost all outcomes changed indicating improvement over 6 months. The DCS and K10 scores decreased indicating less decisional conflict and less psychological distress. The decision aid was acceptable, 25% found it very helpful and 55% a little helpful at 6 months.Conclusion:We met the success criteria demonstrating this study was feasible and acceptable to carers. Future research should test the effectiveness of the decision aid in a full scale evaluation.
  Citation: Palliative Medicine
  PubDate: 2022-09-09T05:10:55Z
  DOI: 10.1177/02692163221122379
‘There’s something about admitting that you are lonely’ –
prevalence, impact and solutions to loneliness in terminal illness: An
explanatory sequential multi-methods study
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  Authors: Jeffrey R Hanna, Tracey McConnell, Craig Harrison, Katarzyna A Patynowska, Anne M Finucane, Briony Hudson, Sharon Paradine, Angela McCullagh, Joanne Reid
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Loneliness is a prevalent societal issue and can impact on a person’s physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated.Aim:To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals.Design:An explanatory multi-method study.Setting/participants:An online survey (n = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals (n = 14). Data were analysed using descriptive statistics and thematic analysis.Results:Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks.Conclusion:There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.
  Citation: Palliative Medicine
  PubDate: 2022-09-09T05:04:07Z
  DOI: 10.1177/02692163221122269
Systematic review of conceptual and theoretical frameworks used in
palliative care and end-of-life care research studies
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  Authors: Aluem Tark, Leah V Estrada, Patricia W Stone, Marianne Baernholdt, Harleah G Buck
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Frameworks are the conceptual underpinnings of the study. Both conceptual and theoretical frameworks are often used in palliative and end-of-life care studies to help with study design, guide, and conduct investigations. While an increasing number of investigators have included frameworks in their study, to date, there has not been a comprehensive review of frameworks that were utilized in palliative and end-of-life care research studies.Aim:To summarize conceptual and theoretical frameworks used in palliative and end-of-life care research studies. And to synthesize which of eight domains from the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care (fourth edition) each framework belongs to.Design:Systematic review.Data sources:Four electronic databases (EMBASE, the Cumulative Index to Nursing and Allied Health, PsychINFO, and PubMed) were searched from July 2010 to September 2021.Results:A total 2231 citations were retrieved, of which 44 articles met eligibility. Across primary studies, 33,801 study participants were captured. Twenty-six investigators (59.1%) proposed previously unpublished frameworks. In 10 studies, investigators modified existing frameworks, mainly to overcome inherent limitations. In eight studies, investigators utilized existing frameworks referenced in previously published studies. There were eight orientations identified among 44 frameworks we reviewed (e.g. system, patient, patient-doctor).Conclusions:We examined palliative and end-of-life research studies to identify and characterize conceptual or theoretical frameworks proposed or utilized. Of 44 frameworks we reviewed, 21 studies (47.7%) were aligned with a Clinical Practice Guideline’s single domain, while the rest two or more of eight guidelines in quality palliative care domains.
  Citation: Palliative Medicine
  PubDate: 2022-09-09T04:59:48Z
  DOI: 10.1177/02692163221122268
How best to capture the impact of complementary therapies in palliative
care: A systematic review to identify and assess the appropriateness and
validity of multi-domain tools
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  Authors: Lucy Mitchinson, Christina Chu, Andrea Bruun, Ali-Rose Sisk, Megan Armstrong, Cecilia Vindrola-Padros, Nuriye Kupeli, Bridget Candy, Patrick Stone
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Complementary therapies are widely used in palliative care settings. Qualitative research found that people with advanced disease report a range of physical and psychological benefits from complementary therapies, however evidence of their effectiveness from clinical trials is inconclusive. This may be because trials are limited by use of inappropriate outcome measures.Aims:To identify tools which capture the impact of massage, reflexology and aromatherapy in people with advanced disease. We (1) identified multi-domain tools used to evaluate these therapies in populations with any chronic health condition and (2) assessed whether tools were valid and psychometrically robust in populations with advanced disease.Design:A two-stage systematic review was conducted using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines (PROSPERO: CRD42020161199).Data sources:Six databases were searched (August 2021). Study methodological quality, tool psychometric properties and evidence quality were assessed. A global comparison score was generated.Results:Stage 1: 66 trials using 40 different multi-domain tools were identified. Stage 2: Of these tools, we identified papers for seven tools regarding development or validation in advanced disease populations. The majority of psychometric data were inconsistent or inconclusive. Data were mostly of low quality due to methodological issues.Conclusion:Of the tools identified, ‘Functional Assessment of Cancer Therapy – General’ appears to be the most suitable alternative tool against COMSIN criteria, for trials of massage, reflexology and aromatherapy in palliative care. Further tool validation is required before firm recommendations can be made. Co-development of a core outcome set could ensure relevant domains are assessed.
  Citation: Palliative Medicine
  PubDate: 2022-09-08T05:13:18Z
  DOI: 10.1177/02692163221122955
Virtual home-based palliative care during COVID-19: A qualitative
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  Authors: Daniel Vincent, Cayden Peixoto, Kieran L Quinn, Kwadwo Kyeremanteng, Genevieve Lalumiere, Allison M Kurahashi, Nathalie Gilbert, Sarina R Isenberg
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Due to the COVID-19 pandemic, many community palliative healthcare providers shifted from providing care in a patient’s home to providing almost exclusively virtual palliative care, or a combination of in-person and virtual care. Research on virtual palliative care is thus needed to provide evidence-based recommendations aiming to enhance the delivery of palliative care during and beyond the pandemic.Aim:To explore the experiences and perceptions of community palliative care providers, patients and caregivers who delivered or received virtual palliative care as a component of home-based palliative care during the COVID-19 pandemic.Design:Qualitative study using phone and video-based semi-structured interviews. Data were analyzed using thematic analysis.Setting/participants:A total of 37 participants, including community palliative care patients/caregivers (n = 19) and healthcare providers (n = 18) recruited from sites in Ottawa and Toronto, Ontario, Canada.Results:Overall, participants preferred in-person palliative care compared to virtual care, but suggested virtual care could be a useful supplement to in-person care. The findings are presented in three main themes: (1) Impact of COVID-19 pandemic on community palliative care services; (2) Factors influencing transition from exclusively virtual model of care back to a blended model of care; and (3) Recommended uses and implementation of virtual palliative careConclusions:Incorporating virtual palliative care into healthcare provider practice models (blended care models) may be the ideal model of care and standard practice moving forward beyond the COVID-19 pandemic, which has important implications toward organization and delivery of community palliative care services and funding of healthcare providers.
  Citation: Palliative Medicine
  PubDate: 2022-09-08T05:10:59Z
  DOI: 10.1177/02692163221116251
Corrigendum
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  Abstract: Palliative Medicine, Ahead of Print.
  
  Citation: Palliative Medicine
  PubDate: 2022-09-07T04:57:22Z
  DOI: 10.1177/02692163221121217
Evaluating a partnership model of hospice enabled dementia care: A
three-phased monitoring, focus group and interview study
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  Authors: Dorry McLaughlin, Felicity Hasson, Joanne Reid, Kevin Brazil, Lesley Rutherford, Carol Stone, Jenny T van der Steen, Joanne Ballentine
  Abstract: Palliative Medicine, Ahead of Print.
  Background:People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly.Aim:This study aimed to evaluate the model of ‘Hospice Enabled Dementia Partnership’ mapped to international domains of best practice.Design:Three-phased monitoring, group interview and individual interview study using a formative evaluation framework.Setting/Participants:The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care.Results:One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data ‘Impact of Dementia’, ‘Value of the Service’, ‘Information and Learning Needs’ and ‘Working in Partnership’.Conclusions:Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally.
  Citation: Palliative Medicine
  PubDate: 2022-09-06T04:31:31Z
  DOI: 10.1177/02692163221116763
Addressing inequity in palliative care provision for older people living
with multimorbidity. Perspectives of community-dwelling older people on
their palliative care needs: A scoping review
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  Authors: Caroline Jane Nicholson, Sarah Combes, Freda Mold, Helen King, Richard Green
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Older people living with multimorbidity are projected to become the main recipients of palliative care in the coming decades, yet there is limited evidence regarding their expressed palliative care needs to inform person-centred care.Aim:To understand the palliative care needs of community-dwelling people aged ⩾60 living with multimorbidity in the last 2 years of life.Design:A scoping review following Arksey and O’Malley.Data sources:Three international electronic databases (CINAHL, Ovid Medline, PsycINFO) were searched from March 2018 to December 2021. Reference lists were hand searched. Eligible papers were those reporting empirical data on older people’s needs.Results:From 985 potential papers, 28 studies were included, published between 2002 and 2020; sixteen quantitative, nine qualitative and three mixed methods. Data were extracted and presented under the holistic palliative care domains of need: physical, psychological, social, spiritual, and additionally practical needs. Different measurement tools (n = 29) were used, of which 20 were multidimensional. Primacy in reporting was given to physical needs, most commonly pain and function. Social and practical needs were often prioritised by older people themselves, including maintaining social connections and accessing and receiving individualised care.Conclusion:Identifying the palliative care needs that matter most to older people with multimorbidity requires the recognition of their concerns, as well as their symptoms, across a continuum of living and dying. Available evidence is superficial. Supporting end of life provision for this growing and underserved population necessitates a shift to tailored multidimensional tools and community focussed integrated care services.
  Citation: Palliative Medicine
  PubDate: 2022-08-25T04:54:41Z
  DOI: 10.1177/02692163221118230
Is the use of palliative care services increasing' A comparison of
current versus historical palliative care access using health service
datasets for patients with cancer
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  Authors: Jennifer Philip, Anna Collins, Olivia Warwyk, Vijaya Sundararajan, Brian Le
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Mature evidence exists supporting the integration of palliative care in cancer care, but translation of evidence into practice is less well understood.Aim:We sought to understand current access to palliative care and its timing for people with cancer and to compare practices over time.Design:We conducted a retrospective population cohort study using routinely collected administrative health data sets in Victoria, Australia.Setting/Participants:All adult cancer decedents in 2018 were identified and clinical, demographic, palliative care access and quality of end of life care indices collected.Comparisons between a historic cohort of lung, breast and prostate cancer patients who died between the years 2005 and 2009 and those with these diagnoses in the current cohort.Results:In 2018 there were 10,245 Victorian decedents with a cancer-coded cause of death, of these 3689 had lung, prostate or breast cancer. In 2018, access to palliative care increased (66% vs 54%) and greater numbers accessed palliative care more than 3 months before death (18% vs 10%) than in 2005–2009. Indices of end of life quality improved across most domains. However the median time between first palliative care and death was shorter in 2018 (22 vs 25 days) and more people first accessed palliative care in the hospitalisation during which they died (43% vs 33%).Conclusion:Despite established benefits of early palliative care, the important task of translation of this evidence into practice remains.
  Citation: Palliative Medicine
  PubDate: 2022-08-25T04:52:43Z
  DOI: 10.1177/02692163221118205
The association between socioeconomic position and the symptoms and
concerns of hospital inpatients seen by specialist palliative care:
Analysis of routinely collected patient data
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  Authors: Joanna M Davies, Katherine E Sleeman, Christina Ramsenthaler, Wendy Prentice, Matthew Maddocks, Fliss EM Murtagh
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Understanding how socioeconomic position influences the symptoms and concerns of patients approaching the end of life is important for planning more equitable care. Data on this relationship is lacking, particularly for patients with non-cancer conditions.Aim:To analyse the association between socioeconomic position and the symptoms and concerns of older adult patients seen by specialist palliative care.Design:Secondary analysis of cross-sectional, routinely collected electronic patient data. We used multivariable linear regression with robust standard errors, to predict scores on the three subscales of the Integrated Palliative care Outcome Scale (IPOS; physical symptoms, emotional symptoms and communication and practical concerns) based on patient level of deprivation, measured using Index of Multiple Deprivation.Setting/participants:Consecutive inpatients aged 60 years and over, seen by specialist palliative care at two large teaching hospitals in London between 1st January 2016 and 31st December 2019.Results:Seven thousand eight hundred and sixty patients were included, 38.3% had cancer. After adjusting for demographic and clinical characteristics, patients living in the most deprived areas had higher (worse) predicted mean scores on the communication and practical subscale than patients living in the least deprived areas, 5.38 (95% CI: 5.10, 5.65) compared to 4.82 (4.62, 5.02) respectively. This effect of deprivation diminished with increasing age. Deprivation was not associated with scores on the physical or emotional symptoms subscales.Conclusions:Targetting resources to address practical and communication concerns could be a strategy to reduce inequalities. Further research in different hospitals and across different settings using patient centred outcome measures is needed to examine inequalities.
  Citation: Palliative Medicine
  PubDate: 2022-08-11T05:13:17Z
  DOI: 10.1177/02692163221115331
A tribute to Derek Doyle and Cynthia Goh
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  Authors: Catherine Walshe
  Abstract: Palliative Medicine, Ahead of Print.
  
  Citation: Palliative Medicine
  PubDate: 2022-07-04T12:04:12Z
  DOI: 10.1177/02692163221109320
Corrigendum to Using the Delphi technique to achieve consensus on
bereavement care in palliative care in Europe: An EAPC White Paper
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  Abstract: Palliative Medicine, Ahead of Print.
  
  Citation: Palliative Medicine
  PubDate: 2022-04-11T04:33:53Z
  DOI: 10.1177/02692163221090072
Family carers research: What progress has been made'
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  Authors: Sheila Payne, Peter Hudson, Gunn Grande
  Abstract: Palliative Medicine, Ahead of Print.
  
  Citation: Palliative Medicine
  PubDate: 2022-02-18T05:01:01Z
  DOI: 10.1177/02692163211037855
Good medicines management: From describing problems to a vision for change
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  Authors: Sally-Anne Francis, Joanne Wilson, Sarah Yardley
  Abstract: Palliative Medicine, Ahead of Print.
  
  Citation: Palliative Medicine
  PubDate: 2022-02-14T01:06:44Z
  DOI: 10.1177/02692163221076712
When should palliative care be introduced for people with progressive
fibrotic interstitial lung disease' A meta-ethnography of the
experiences of people with end-stage interstitial lung disease and their
family carers
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  Authors: Evelyn Palmer, Emily Kavanagh, Shelina Visram, Anne-Marie Bourke, Ian Forrest, Catherine Exley
  First page: 1171
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Little is currently known about the perspectives of people with interstitial lung disease and their carers in relation to the timing of palliative care conversations.Aim:To establish patients’ and carers’ views on palliative care in interstitial lung disease and identify an optimum time to introduce the concept of palliative care.Design:Meta-ethnography of qualitative evidence. The review protocol was prospectively registered with PROSPERO (CRD42021243179).Data sources:Five electronic healthcare databases were searched (Medline, Embase, CINAHL, Scopus and Web of Science) from 1st January 1996 to 31st March 2022. Studies were included that used qualitative methodology and included patients’ or carers’ perspectives on living with end-stage disease or palliative care. Quality was assessed using the Critical Appraisal Skills Programme checklist.Results:About 1779 articles were identified by initial searches. Twelve met the inclusion criteria, providing evidence from 266 individuals across five countries. Three stages were identified in the illness journey of a person with interstitial lung disease: (1) Information seeking, (2) Grief and adjustment, (3) Fear of the future. Palliative care involvement was believed to be most appropriate in the latter two stages and should be prompted by changes in patients’ health such as respiratory infections, onset of new symptoms, hospital admission, decline in physical function and initiation of oxygen.Conclusions:Patients and carers prefer referral to palliative care services to be prompted by changes in health status. Future research should focus on supporting timely recognition of changes in patients’ health status and how to respond in a community setting.
  Citation: Palliative Medicine
  PubDate: 2022-06-11T07:11:16Z
  DOI: 10.1177/02692163221101753
Measuring quality of dying, death and end-of-life care for children and
young people: A scoping review of available tools
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  Authors: Catriona R Mayland, Katy A Sunderland, Matthew Cooper, Paul Taylor, Philip A Powell, Lucy Zeigler, Vicki Cox, Constance Gilman, Nicola Turner, Kate Flemming, Lorna K Fraser
  First page: 1186
  Abstract: Palliative Medicine, Ahead of Print.
  Background:The circumstances and care provided at the end of a child’s life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided.Aim:To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools.Design:Scoping review was conducted following the Arksey and O’Malley methodological framework.Data sources:Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000–June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the ‘dying’ phase of illness (defined as the last month of life).Results:From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as ‘proxy’ assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting.Conclusions:Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.
  Citation: Palliative Medicine
  PubDate: 2022-08-02T04:50:42Z
  DOI: 10.1177/02692163221105599
Machine learning models to detect social distress, spiritual pain, and
severe physical psychological symptoms in terminally ill patients with
cancer from unstructured text data in electronic medical records
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  Authors: Kento Masukawa, Maho Aoyama, Shinichiroh Yokota, Jyunya Nakamura, Ryoka Ishida, Masaharu Nakayama, Mitsunori Miyashita
  First page: 1207
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Few studies have developed automatic systems for identifying social distress, spiritual pain, and severe physical and phycological symptoms from text data in electronic medical records.Aim:To develop models to detect social distress, spiritual pain, and severe physical and psychological symptoms in terminally ill patients with cancer from unstructured text data contained in electronic medical records.Design:A retrospective study of 1,554,736 narrative clinical records was analyzed 1 month before patients died. Supervised machine learning models were trained to detect comprehensive symptoms, and the performance of the models was tested using the area under the receiver operating characteristic curve (AUROC) and precision recall curve (AUPRC).Setting/participants:A total of 808 patients was included in the study using records obtained from a university hospital in Japan between January 1, 2018 and December 31, 2019. As training data, we used medical records labeled for detecting social distress (n = 10,000) and spiritual pain (n = 10,000), and records that could be combined with the Support Team Assessment Schedule (based on date) for detecting severe physical/psychological symptoms (n = 5409).Results:Machine learning models for detecting social distress had AUROC and AUPRC values of 0.98 and 0.61, respectively; values for spiritual pain, were 0.90 and 0.58, respectively. The machine learning models accurately identified severe symptoms (pain, dyspnea, nausea, insomnia, and anxiety) with a high level of discrimination (AUROC > 0.8).Conclusion:The machine learning models could detect social distress, spiritual pain, and severe symptoms in terminally ill patients with cancer from text data contained in electronic medical records.
  Citation: Palliative Medicine
  PubDate: 2022-07-01T05:27:14Z
  DOI: 10.1177/02692163221105595
Paramedics’ experiences and educational needs when participating
end-of-life care at home: A mixed method study
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  Authors: Leena K Surakka, Minna Hökkä, Kari Törrönen, Pekka Mäntyselkä, Juho T Lehto
  First page: 1217
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Paramedics face end-of-life care patients during emergency calls and more recently through planned protocols. However, paramedics experiences and educational needs concerning preplanned end-of-life care at home remain largely unknown.Aim:To describe experiences and educational needs of the paramedics included in the end-of-life care protocol.Design:A mixed method study with a questionnaire including open ended questions and numeric evaluations on a Likert scale.Setting/Participants:The questionnaire was delivered to and answered by all the 192 paramedics working in North Karelia fire and rescue department during the time of the data collection in 2017.Results:Over 80% of the paramedics agreed that the protocol helped them to take care of the patients and to improve the quality of end-of-life care. Visits to the patients were considered useful and the end-of-life care as a meaningful work by 76.5% and 62.5% of the paramedics, respectively. The paramedics expressed challenges in psychosocial aspects, communication, symptom management, and their role in end-of-life care. Encountering and communication with the families as well as managing the most common symptoms were emphasized as educational needs. Using a patient controlled analgesia device emerged as an example of practical educational aspect.Conclusions:Paramedics considered end-of-life care at home meaningful but called for more competency in supporting and encountering the families and in symptom management. Our results can be utilized when developing end-of-life care protocols and education for the paramedics. Patients’ and families’ views on the paramedics’ participation in end-of-life care should be evaluated in the future.
  Citation: Palliative Medicine
  PubDate: 2022-08-04T04:50:01Z
  DOI: 10.1177/02692163221105593
Palliative paramedicine: Comparing clinical practice through guideline
quality appraisal and qualitative content analysis
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  Authors: Madeleine L Juhrmann, Natalie E Anderson, Mark Boughey, Duncan S McConnell, Paul Bailey, Lachlan E Parker, Andrew Noble, Amber H Hultink, Phyllis N Butow, Josephine M Clayton
  First page: 1228
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Palliative care is an emerging scope of practice for paramedicine. The COVID-19 pandemic has highlighted the opportunity for emergency settings to deliver palliative and end-of-life care to patients wishing to avoid intensive life-sustaining treatment. However, a gap remains in understanding the scope and limitations of current ambulance services’ approach to palliative and end-of-life care.Aim:To examine the quality and content of existing Australian palliative paramedicine guidelines with a sample of guidelines from comparable Anglo-American ambulance services.Design:We appraised guideline quality using the AGREE II instrument and employed a collaborative qualitative approach to analyse the content of the guidelines.Data sources:Eight palliative care ambulance service clinical practice guidelines (five Australian; one New Zealand; one Canadian; one United Kingdom).Results:None of the guidelines were recommended by both appraisers for use based on the outcomes of all AGREE II evaluations. Scaled individual domain percentage scores varied across the guidelines: scope and purpose (8%–92%), stakeholder involvement (14%–53%), rigour of development (0%–20%), clarity of presentation (39%–92%), applicability (2%–38%) and editorial independence (0%–38%). Six themes were developed from the content analysis: (1) audience and approach; (2) communication is key; (3) assessing and managing symptoms; (4) looking beyond pharmaceuticals; (5) seeking support; and (6) care after death.Conclusions:It is important that ambulance services’ palliative and end-of-life care guidelines are evidence-based and fit for purpose. Future research should explore the experiences and perspectives of key palliative paramedicine stakeholders. Future guidelines should consider emerging evidence and be methodologically guided by AGREE II criteria.
  Citation: Palliative Medicine
  PubDate: 2022-08-09T04:42:09Z
  DOI: 10.1177/02692163221110419
How much information is ‘reasonable’' A qualitative interview
study of the prescribing practices of palliative care professionals
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  Authors: Katie Dumble, Annelieke Driessen, Erica Borgstrom, Jonathan Martin, Sarah Yardley, Simon Cohn
  First page: 1242
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Prescribing clinicians have to negotiate ambiguities around information provision and consent for medications on a daily basis, despite the availability of professional guidance.Aim:This study aims to explore some of the many factors prescribing clinicians in the United Kingdom take into account when deciding what information to give to patients about medication choices, and when.Design:In depth face-to-face interviews, utilising both a hypothetical scenario and semi-structured prompts, were conducted in order to elicit extended reflections on how clinicians individually work through such dilemmas and make decisions.Setting/participants:Ten prescribing clinicians (doctors and nurses) from a large combined team of National Health Service (NHS) secondary and community palliative care providers in England.Results:Palliative care staff regularly face choices about information provision in prescribing discussions, in particular when considering whether information might increase distress. Participants presented three overlapping framings that helped them assess the range of factors that could potentially be taken into account; (1) assessing the individual patient, (2) tailoring the provision of information and (3) jointly forming a plan.Conclusions:Information provision about medication choices and effects is a demanding, ongoing process, requiring nuanced judgements that constitute an unacknowledged yet significant aspect of clinical workload. Although current medical guidelines allow clinical discretion about information provision, this can leave individual clinicians feeling vulnerable. Further evolution of guidelines needs to establish a more sophisticated way to acknowledge professional and legal requirements, whilst also promoting professional autonomy and judgement.
  Citation: Palliative Medicine
  PubDate: 2022-06-11T06:39:14Z
  DOI: 10.1177/02692163221103471
Inadequate human resources, equipment and training: A qualitative
assessment of the objectives of the NUHELP end-of-life care programme in
the context of the COVID-19 pandemic
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  Authors: Emilio Mota Romero, Daniel Puente Fernández, Carmen Rodríguez Pertíñez, Gema Árbol Fernández, Socorro Moreno Guerrero, Rafael Montoya Juárez
  First page: 1252
  Abstract: Palliative Medicine, Ahead of Print.
  Background:The COVID-19 pandemic had a particularly severe impact on nursing homes, exposing numerous pre-existing deficiencies in end-of-life care.Aim:To describe how the COVID-19 pandemic affected nursing home and primary care professionals’ attempts to achieve the objectives of a pre-existing end-of-life programme and to explore their personal experiences of end-of-life care in these facilities.Design:A qualitative descriptive study using thematic analysis.Setting/participants:Twenty semi-structured interviews were conducted from March to November 2020 with professionals from nursing homes and primary care facilities who participated in the development of the NUHELP programme.Results:Six main themes were identified: (1) Comprehensive assessments of residents at the homes were not conducted due to excessive workload and high staff turnover. (2) New technologies and changes to professional roles were used to meet relatives’ needs for information. Residents only received information when they requested it. (3) Advance care planning was not carried out and was limited to potential hospital transfer. (4) Arrangements were made to allow relatives to spend time with residents during their final moments, but complicated grief among relatives and professionals is anticipated. (5) Management of complexity varied depending on the degree of coordination with primary care facilities. (6) Nursing home professionals felt abandoned, with a lack of human resources, equipment and training.Conclusions:The pandemic cast light on existing shortcomings in nursing homes in terms of comprehensive assessments, communication, decision making, grief management and palliative care complexity. Nursing homes need more human, material and training resources, as well as improved coordination with the public healthcare system.
  Citation: Palliative Medicine
  PubDate: 2022-06-22T06:26:30Z
  DOI: 10.1177/02692163221103099
‘It’s not just all about the fancy words and the adults’:
Recommendations for practice from a qualitative interview study with
children and young people with a parent with a life-limiting illness
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  Authors: Steve Marshall, Rachel Fearnley, Katherine Bristowe, Richard Harding
  First page: 1263
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Healthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves.Aim:To develop an understanding of the perspective of children on living with parental life-limiting illness and inform recommendations for healthcare professionals.Design:Qualitative semi-structured interviews were conducted, with thematic analysis of the data.Setting/participants:A diverse sample of 32 children aged 6–17, whose parent was living with life-limiting illness, were recruited from across the United Kingdom.Results:Despite the challenges of living with a parent with a life-limiting illness, the children display agency in their response. The children: feel a responsibility to look after their family; negotiate a relationship with healthcare; employ strategies to maintain some normality; and ensure that the inevitable sadness does not become overwhelming.Conclusions:Five recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children; (2) recognise children’s caregiving roles; (3) engender children’s trust in healthcare; (4) maintain some normality; and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children.
  Citation: Palliative Medicine
  PubDate: 2022-06-29T01:05:08Z
  DOI: 10.1177/02692163221105564
Stakeholder perspectives of a pilot multicomponent delirium prevention
intervention for adult patients with advanced cancer in palliative care
units: A behaviour change theory-based qualitative study
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  Authors: Anna Green, Annmarie Hosie, Jane L Phillips, Slavica Kochovska, Beverly Noble, Meg Brassil, Anne Cumming, Peter G Lawlor, Shirley H Bush, Jan Maree Davis, Layla Edwards, Jane Hunt, Julie Wilcock, Carl Phillipson, Eugene Wesley Ely, Cynthia Parr, Melanie Lovell, Meera Agar
  First page: 1273
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Theory-based and qualitative evaluations in pilot trials of complex clinical interventions help to understand quantitative results, as well as inform the feasibility and design of subsequent effectiveness and implementation trials.Aim:To explore patient, family, clinician and volunteer (‘stakeholder’) perspectives of the feasibility and acceptability of a multicomponent non-pharmacological delirium prevention intervention for adult patients with advanced cancer in four Australian palliative care units that participated in a phase II trial, the ‘PRESERVE pilot study’.Design:A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie’s Behaviour Change Wheel and the Theoretical Domains Framework.Setting/participants:Thirty-nine people involved in the trial: nurses (n = 17), physicians (n = 6), patients (n = 6), family caregivers (n = 4), physiotherapists (n = 3), a social worker, a pastoral care worker and a volunteer.Results:Participants’ perspectives aligned with the ‘capability’, ‘opportunity’ and ‘motivation’ domains of the applied frameworks. Of seven themes, three were around the alignment of the delirium prevention intervention with palliative care (intervention was considered routine care; intervention aligned with the compassionate and collaborative culture of palliative care; and differing views of palliative care priorities influenced perspectives of the intervention) and four were about study processes more directly related to adherence to the intervention (shared knowledge increased engagement with the intervention; impact of the intervention checklist on attention, delivery and documentation of the delirium prevention strategies; clinical roles and responsibilities; and addressing environmental barriers to delirium prevention).Conclusion:This theory-informed qualitative study identified multiple influences on the delivery and documentation of a pilot multicomponent non-pharmacological delirium prevention intervention in four palliative care units. Findings inform future definitive studies of delirium prevention in palliative care.Australian New Zealand Clinical Trials Registry, ACTRN12617001070325; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx'id=373168
  Citation: Palliative Medicine
  PubDate: 2022-08-12T04:53:01Z
  DOI: 10.1177/02692163221113163
Development of a national strategy with recommendations for the care of
seriously ill and dying people and their relatives in pandemics: A
modified Delphi study
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  Authors: Sonja Gauder, Anne Pralong, Constanze Rémi, Farina Hodiamont, Isabell Klinger, Maria Heckel, Steffen T Simon, Claudia Bausewein
  First page: 1285
  Abstract: Palliative Medicine, Ahead of Print.
  Background:The SARS-CoV-2 pandemic is a constant challenge for health care systems, also in Germany. Care of seriously ill and dying people and their relatives is often neglected and suffering increased due to sub-optimal symptom management, visiting restrictions and lonely dying. The project “Palliative Care in Pandemics (PallPan)” intended to develop a national strategy including evidence- and consensus-based recommendations for the care of seriously ill and dying people and their relatives during pandemic times in Germany.Aim:To reach consensus on evidence-based recommendations for the care of seriously ill and dying people and their relatives in pandemics.Methods:Three-step consensus process comprising two online Delphi rounds and an expert workshop conducted from April to June 2021. One hundred twenty experts from various areas of healthcare, administration, and politics in Germany were included.Results:During the consensus-process, pre-formulated evidence-based recommendations were refined step-by-step. This resulted in consensus on 33 recommendations on the topics of “supporting patients and their relatives,” “supporting staff,” and “supporting and maintaining structures and provision of palliative care.” The recommendations address professional carers and various responsibilities on a governmental, federal state and municipal level, and in healthcare facilities.Conclusion:We provide evidence and consensus-based recommendations for the care of seriously ill and dying people and their relatives in pandemics in Germany. This is an important step towards a pandemic preparedness and hopefully improves the future palliative care response to pandemics.
  Citation: Palliative Medicine
  PubDate: 2022-08-12T04:54:39Z
  DOI: 10.1177/02692163221114536
The most important components of out-of-hours community care for patients
at the end of life: A Delphi study of healthcare professionals’ and
patient and family carers’ perspectives
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  Authors: Joanna Goodrich, Lydia Tutt, Alice M Firth, Catherine J Evans, Fliss EM Murtagh, Richard Harding
  First page: 1296
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined.Aim:To establish expert consensus on the most important components of out-of-hours community palliative care services.Design:Delphi study. The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals and input from the project’s patient and public involvement advisory group. The components deemed ‘essential’ by over 70% of participants in the first round were refined and carried forward to a second round, asking participants to rank each on a five-point Likert scale (5 highest to 1 lowest). The consensus threshold was median of 4 to 5 and interquartile range of ⩽1.Participants:Community specialist palliative care health professionals, generalist community health professionals and patients and family carers with experience of receiving care out-of-hours at home.Results:Fifty-four participants completed round 1, and 44 round 2. Forty-five components met the threshold as most important for providing out-of-hours care, with highest consensus for: prescription, delivery and administration of medicines; district and community nurse visits; and shared electronic patient records and advance care plans.Conclusions:The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.
  Citation: Palliative Medicine
  PubDate: 2022-06-29T01:08:31Z
  DOI: 10.1177/02692163221106284
Bereavement outcomes in family members of those who died in acute care
hospitals before and during the first wave of COVID-19: A cohort study
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  Authors: James Downar, Henrique A. Parsons, Leila Cohen, Ella Besserer, Samantha Adeli, Valérie Gratton, Rebekah Murphy, Grace Warmels, Adrianna Bruni, Khadija Bhimji, Claire Dyason, Paula Enright, Isabelle Desjardins, Krista Wooller, Monisha Kabir, Chelsea Noel, Brandon Heidinger, Koby Anderson, Kyle Arsenault-Mehta, Julie Lapenskie, Colleen Webber, Daniel Bedard, Akshai Iyengar, Shirley H Bush, Sarina R Isenberg, Peter Tanuseputro, Brandi Vanderspank-Wright, Peter Lawlor
  First page: 1305
  Abstract: Palliative Medicine, Ahead of Print.
  Background:The COVID-19 pandemic has caused millions of deaths worldwide, leading to symptoms of grief among the bereaved. Neither the burden of severe grief nor its predictors are fully known within the context of the pandemic.Aim:To determine the prevalence and predictors of severe grief in family members who were bereaved early in the COVID-19 pandemic.Design:Prospective, matched cohort study.Setting/Participants:Family members of people who died in an acute hospital in Ottawa, Canada between November 1, 2019 and August 31, 2020. We matched relatives of patients who died of COVID (COVID +ve) with those who died of non-COVID illness either during wave 1 of the pandemic (COVID −ve) or immediately prior to its onset (pre-COVID). We abstracted decedents’ medical records, contacted family members>6 months post loss, and assessed grief symptoms using the Inventory of Complicated Grief-revised.Results:We abstracted data for 425 decedents (85 COVID +ve, 170 COVID −ve, and 170 pre-COVID), and 110 of 165 contacted family members (67%) consented to participate. Pre-COVID family members were physically present more in the last 48 h of life; the COVID +ve cohort were more present virtually. Overall, 35 family members (28.9%) had severe grief symptoms, and the prevalence was similar among the cohorts (p = 0.91). Grief severity was not correlated with demographic factors, physical presence in the final 48 h of life, intubation, or relationship with the deceased.Conclusion:Severe grief is common among family members bereaved during the COVID-19 pandemic, regardless of the cause or circumstances of death, and even if their loss took place before the onset of the pandemic. This suggests that aspects of the pandemic itself contribute to severe grief, and factors that normally mitigate grief may not be as effective.
  Citation: Palliative Medicine
  PubDate: 2022-07-04T12:26:34Z
  DOI: 10.1177/02692163221109711
A peripheral opioid antagonist for treating urinary retention induced by
opioids: A case report
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  Authors: Sebastiano Mercadante
  First page: 1313
  Abstract: Palliative Medicine, Ahead of Print.
  Background:Urinary retention is a poorly studied opioid-related adverse effect. There is a paucity of data regarding the treatment of such disturbance in patients with advanced cancer receiving opioids.Actual case:A young man, without comorbidities, was receiving 30 mg/day of oxycodone for abdominal pain due to pancreatic cancer, unsuccessfully. He also complained of severe urinary retention that developed after initiation of opioid therapy. Methadone therapy was effective on pain intensity, but bladder dysfunction persisted.Possible courses of action:Only anedoctal experience exists for opioid-induced urinary retention. The options included alpha-receptor blockers and flavoxate, which are symptomatic drugs, not addressed to the possible mechanism.Formulation of a plan:The use of a peripheral opioid antagonist was planned, according to the presumed mechanism of urinary retention. Thus, naldemedine 200 mcg was prescribed for relieving urinary retention.Outcome:The day after starting naldemedine, urinary retention completely reversed and pain was well-controlled.Lessons:The rational of using naldemedine was based on the component of opioid-induced urinary retention due to involvement of peripheral receptors in the bladder and sphincter.View:In this case report, the effect of the peripheral opioid antagonist was prompt and long-lasting. Future studies of this neglected adverse effect of opioids should be performed to confirm this observation.
  Citation: Palliative Medicine
  PubDate: 2022-08-09T04:45:28Z
  DOI: 10.1177/02692163221107109