Receiving Specialist Palliative Care Research Articles

Efficacy of spiritual interventions in palliative care: An umbrella review of systematic reviews.

Spiritual care is increasingly recognised as an essential component of care in palliative settings. Given this growing body of literature on spiritual interventions, there is a need to systematically evaluate and synthesis findings from previous systematic reviews. To systematically synthesise the available evidence from systematic reviews concerning (a) the efficacy of spiritual care interventions and (b) the extent and nature of spiritual care interventions used in specialist palliative care settings. An umbrella review of systematic reviews was conducted in accordance with PROSPERO (CRD42024455147) and followed the Joanna Briggs Institute methodology for umbrella reviews. Electronic databases (Ovid Medline, Embase, APA PsycINFO, Cochrane Database of Systematic Reviews, CINAHL and Web of Science) and references of accepted systematic reviews were searched for systematic reviews from inception to 2024. The AMSTAR-2 criteria was used to assess risk of bias within systematic reviews. A toal of 27 reviews met the eligibility criteria and reported the effects of 14 different spiritual care interventions across 431 studies including 55,759 participants. Findings show that spiritual care interventions especially dignity therapy and life-review may be effective for improving outcomes including spiritual wellbeing, emotional symptoms, quality-of-life and physical symptoms in people receiving specialist palliative care. Under half of included reviews report follow-up data where only emotional symptoms and quality-of-life are reported in more than one review. Overall, spiritual care interventions have positive effects on spiritual wellbeing, quality of life and mood, compared to control conditions. Increased methodological rigour is needed to capture effect and duration of effect with spiritual care interventions at different phases of palliative care.

Multicenter exploration of specialist palliative care in patients with left ventricular assist devices – a retrospective study

BackgroundThe number of advanced heart failure patients with left ventricular assist devices (LVAD) is increasing. Despite guideline-recommendations, little is known about specialist palliative care involvement in LVAD-patients, especially in Europe. This study aims to investigate timing and setting of specialist palliative care in LVAD-patients.MethodsWe conducted a retrospective multicenter study in 2022. Specialist palliative care services in German LVAD-centers were identified and invited to participate. Forty adult LVAD-patients (mean age 65 years (SD 7.9), 90% male) from seven centers that received a specialist palliative care consultation during hospitalization were included.ResultsIn 37 (67.3%) of the 55 LVAD-centers, specialist palliative care was available. The median duration between LVAD-implantation and first specialist palliative care contact was 17 months (IQR 6.3–50.3 months). Median duration between consultation and death was seven days (IQR 3–28 days). 65% of consults took place in an intensive/intermediate care unit with half of the patients having a Do-Not-Resuscitate order. Care planning significantly increased during involvement (advance directives before: n = 15, after: n = 19, p < 0.001; DNR before: n = 20, after: n = 28, p < 0.001). Symptom burden as assessed at first specialist palliative care contact was higher compared to the consultation requests (request: median 3 symptoms (IQR 3–6); first contact: median 9 (IQR 6–10); p < 0.001) with a focus on weakness, anxiety, overburdening of next-of-kin and dyspnea. More than 70% of patients died during index hospitalization, one third of these in a palliative care unit.ConclusionsThis largest European multicenter investigation of LVAD-patients receiving specialist palliative care shows a late integration and high physical and psychosocial symptom burden. This study highlights the urgent need for earlier integration to identify and address poorly controlled symptoms. Further studies and educational efforts are needed to close the gap between guideline-recommendations and the current status quo.

Complexity in palliative care inpatients: Prevalence and relationship with the provision of care—a retrospective study

Context End-of-life palliative care aims to provide comprehensive care and can be marked by somatic, psychosocial, and spiritual distresses, requiring interdisciplinary care. However, interdisciplinary care is costly, and palliative care services, similar to all other medical services, are pressurized to be as cost-effective as possible. Objectives To describe the case complexity of palliative care inpatients, we evaluated possible correlations between complexity and the provision of care and identified complexity subgroups. Methods Patients (N = 222) hospitalized in a specialist palliative care unit in Switzerland were assessed for biopsychosocial complexity using INTERMED. Based on a chart review, INTERMED scores were determined at admission and at the end of hospitalization or at death. Descriptive statistics and Pearson’s correlation coefficients were used to estimate the association between biopsychosocial complexity and the amount and type of care provided. Principal component analysis (PCA) was conducted to explain variance and identify patient subgroups. Results Almost all patients (98.7%) qualified as complex, as indicated by INTERMED. Provision of care was positively correlated (r = 0.23, p = 0.0008) with INTERMED scores upon admission. The change in the INTERMED score during the stay correlated negatively with the provision of care (r = −0.27, p = 0.0001). PCA performed with two factors explained 49% of the total variance and identified two subgroups that differed in the INTERMED psychosocial-item scores. Conclusion Inpatients receiving specialist palliative care showed the highest complexity score of all populations assessed to date using INTERMED. Correlations between biopsychosocial complexity and care provided, and between care and decrease in complexity scores can be considered indicators of care efficiency. Patient subgroups with specific requirements (psychosocial burden) suggested that palliative care teams require specialist palliative care collaborators. Key message Palliative care provision correlates with case complexity and is effective.

Patient Perceptions of Specialist Palliative Care Intervention in Surgical Oncology Care.

Surgical oncology patients have a high symptom burden and increased risk of morbidity. The aim of palliative care is to evaluate and treat the patient in a holistic manner focusing on the unique attributes of each patient. This goal-concordant approach could help surgical patients cope with the stress and uncertainty that often accompany serious illness and surgery, improving overall outcomes. This qualitative analysis sought to explore whether unmet specialist palliative care or end-of-life needs exist in this population. Qualitative interviews were completed with a subset of participants in a randomized, controlled trial of a specialist palliative care intervention for patients undergoing abdominal oncologic surgery. The interview guide sought to elicit respondents' perceptions of palliative care and end-of-life needs perioperatively and postoperatively. Recurring themes were identified by two independent coders. Analysis of 47 interview transcripts revealed few serious concerns about end-of-life issues, however appreciation for the supportive presence offered by palliative care was present. Among participants who received specialist palliative care, many found the intervention helpful, but few were able to articulate issues that the intervention improved. These findings suggest low levels of unmet palliative care needs among this population, which is consistent with the results of the parent trial. Targeting patients with a higher symptom burden perioperatively may allow for improved symptom management and better adherence to the treatment plan postoperatively, as well as be a more focused use of specialist palliative care clinicians' efforts.

‘How long do you think?’ Unresponsive dying patients in a specialist palliative care service: A consecutive cohort study

Background: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. Aim: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. Design: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient’s final phase of life, taking into account variation across age, gender, diagnosis and location of death. Setting/participants: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. Results: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. Conclusion: This study provides valuable new knowledge to support clinicians’ confidence when responding to the ‘how long’ question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering ‘how long’ questions across the illness trajectory.

Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Association between Inappropriate End-of-Life Cancer Care and Specialist Palliative Care: A Retrospective Observational Study in Two Acute Care Hospitals.

A substantial number of patients with life-threatening illnesses like cancer receive inappropriate end-of-life care. Improving their quality of end-of-life care is a priority for patients and their families and for public health. To investigate the association between provision, timing, and initial setting of hospital-based specialist palliative care and potentially inappropriate end-of-life care for patients with cancer in two acute care hospitals in the Netherlands, we conducted a retrospective observational study using hospital administrative databases. All adults diagnosed with or treated for cancer in the year preceding their death in 2018 or 2019 were included. The main exposure was hospital-based specialist palliative care initiated >30 days before death. The outcome measures in the last 30 days of life were six quality indicators for inappropriate end-of-life care (≥2 ED-visits, ≥2 hospital admissions, >14 days hospitalization, ICU-admission, chemotherapy, hospital death). We identified 2603 deceased patients, of whom 14% (n = 359) received specialist palliative care >30 days before death (exposure group). Overall, 27% (n = 690) received potentially inappropriate end-of-life care: 19% in the exposure group, versus 28% in the non-exposure group (p < 0.001). The exposure group was 45% less likely to receive potentially inappropriate end-of-life care (AOR 0.55; 95% CI 0.41 to 0.73). Early (>90 days) and late (≤90 and >30 days) initiation of specialist palliative care, as well as outpatient and inpatient initiation, were all associated with less potentially inappropriate end-of-life care (AOR 0.49; 0.62; 0.32; 0.64, respectively). Thus, timely access to hospital-based specialist palliative care is associated with less potentially inappropriate end-of-life care for patients with cancer. The outpatient initiation of specialist palliative care seems to enhance this result.

Taiwanese family members’ bereavement experience following an expected death: a systematic review and narrative synthesis

BackgroundBereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese family members living in Taiwan following an expected death.MethodsMEDLINE, PsycINFO, CINAHL, China Academic Journal Database, and Chinese Electronic Periodical Services were searched with no date restrictions from inception to 20 October 2022. The methodological rigour of studies was assessed using Hawker’s appraisal tool. A narrative synthesis approach using Popay’s work was employed to synthesise the findings of the studies. Studies investigating Taiwanese family members’ bereavement experiences were included. We excluded papers studying bereavement through the death of a child.ResultsSearches retrieved 12,735 articles (after de-duplication), 17 of which met the inclusion criteria and were included for synthesis: English [9] and Chinese [8], published between 2006 and 2021. The studies varied in quality with scores ranging from 22 to 33 out of 36. The studies differed in the relationship between participants and the deceased, the bereaved time frames, and the definitions of bereavement. Most studies focussed on family members of cancer patients receiving specialist palliative care. Three bereavement theories and four tools were used. Risk factors of bereavement outcomes included family members feeling less prepared for death and deaths where palliative sedative therapy was used. Protective factors were higher caregiving burden and longer caregiving periods. Four themes regarding Taiwanese bereavement experience were generated: multiple impacts of death; problem-based coping strategies; importance of maintaining connections; influential religious beliefs and rituals.ConclusionContinuing the relationship with the deceased is a key element of Taiwanese bereavement experience and it is influenced by religious and cultural beliefs. Suppressing or hiding emotions during bereavement to connect with the deceased and maintain harmonious relationships needs to be acknowledged as culturally acceptable and encouraged by some religions in Taiwan. The findings could be potentially relevant for other Chinese populations, predominantly Buddhist countries or other East Asian societies. The role of preparing for death in bereavement outcomes is little understood and requires further research.

COVID-19 and End of Life in a Quaternary Australian Hospital: Referral for Palliative Care Consultation.

The coronavirus disease 2019 (COVID-19) pandemic resulted in complex physical and psychosocial symptom burden at end of life. The benefit of specialist palliative care input in other disease states has been established, however, there is little evidence on referral patterns to these services in patients dying from COVID-19. This retrospective audit investigated the referral patterns for patients who died from COVID-19 at a quaternary hospital in South Australia (the Royal Adelaide Hospital) over a six-month period in 2022, and whether demographic features or COVID-19 specific factors had an impact on whether these patients received specialist palliative care services (PCS). The second aim was to identify prescription patterns for patients in the last 24 hours of life, and whether this was impacted by referral. Data were obtained from electronic medical records and analyzed using binary logistic regressions for referral to PCS versus no referral based on various predictors. There was no significant difference comparing patient demographics or COVID-19 specific factors with referral to PCS. There was statistical significance between patients who received referral to PCS and those who had a higher oral morphine equivalent daily dose (OMEDD) in the 24 hours before death, as well as the presence of a continuous subcutaneous infusion. Although the cause of this relationship is undetermined, it may represent the prescription patterns of the palliative care physicians during consultation or potentially higher symptom burden prompting referral. There was also a higher proportion of patients who received hydromorphone compared with other opioids, though the OMEDD was consistent with other published literature.

A casemix classification for those receiving specialist palliative care during their last year of life across England: the C-CHANGE research programme

A casemix classification for those receiving specialist palliative care during their last year of life across England: the C-CHANGE research programme

The Oral Symptom Assessment Scale (OSAS): criterion validation with the EORTC QLQ-OH15 and reliability testing.

The aim of this study was to investigate the criterion validity and reliability of the Oral Symptom Assessment Scale (OSAS) in patients with advanced cancer receiving specialist palliative care. To examine criterion validity, participants completed the OSAS, EORTC QLQ-C30 and EORTC QLQ-OH15. Twenty-four hours later participants repeated the OSAS to investigate test-retest reliability. 54 participants were recruited (median age 70; range: 35- 93years). 51 complete datasets were obtained. Cohen's kappa test was used to evaluate the agreement for the presence / absence of symptoms on the OSAS on the first and second days (test-retest reliability). This analysis showed values of moderate and higher for agreement for all symptoms. All kappa values were statistically significant. The test-retest reliability for symptom severity, frequency and distress was assessed using Intraclass Correlation Coefficient. Spearman's rank correlation coefficients were used to evaluate agreement between similar questions on the OSAS from day one and the EORTC QLQ-OH15 also on day one to examine criterion validity. This study supports the validity of the OSAS, and provides evidence for the reliability of this novel oral symptom assessment tool, in patients with advanced cancer. Further research is needed to corroborate the findings of this study. CancerTrials.gov registry registration no.: PM202166.

Inequity in end-of-life care for patients with chronic liver disease in England.

The World Health Assembly recommends integration of palliative care into treatment of patients with any life-limiting condition, yet patients with non-malignant disease are less likely to receive specialist palliative care (SPC). This study compares SPC offered to patients with hepatocellular carcinoma (HCC) versus patients with chronic liver disease without HCC (CLD without HCC). Patients who died from CLD or HCC over 5 years (2013-2017) in England were identified using a dataset linking national data on all hospital admissions (Hospital Episode Statistics - HES) with national mortality data from the Office for National Statistics (HES - ONS). The primary outcome was the proportion of patients who received inpatient SPC in their last year of life (LYOL). Secondary outcomes were (1) early inpatient SPC input and (2) the proportion dying in a hospice. The outcomes were compared between patients with HCC and CLD without HCC. 29 669 patients were identified, 8143 of whom had HCC. Patients with HCC were significantly more likely to receive inpatient SPC input-adjusted OR 3.74 (95% CI 3.52-3.97) and early inpatient SPC input-adjusted OR 7.26 (95% CI 6.38-8.25) and die in a hospice OR 8.23 (95% CI 7.33-9.24) than patients with CLD without HCC. These data highlight the stark inequity in access to SPC services between patients with HCC and patients with CLD without HCC in England. Addressing these inequities will improve end-of-life care for patients with CLD.

Differences in trends in discharge location in a cohort of hospitalized patients with cancer and non-cancer diagnoses receiving specialist palliative care: A retrospective cohort study

Background: Patients with and without cancer are frequently hospitalized, and have specialist palliative care needs. In-hospital mortality can serve as a quality indicator of acute care. Trends in acute care outcomes have not previously been evaluated in patients with confirmed specialist palliative care needs or between diagnostic groups. Aim: To compare trends in discharge location between hospitalized patients with and without cancer who received specialist palliative care. Design: Retrospective cohort study. Association between diagnosis (cancer, non-cancer) and in-hospital mortality was assessed using multivariable logistic regression, controlling for demographic, clinical, and admission-specific information. Setting/participants: Patients who received specialist palliative care at an academic tertiary hospital in Toronto, Canada from 2013 to 2019. Results: The cohort comprised 6846 patients, 5024 with and 1822 without cancer. A higher proportion of patients without cancer had a Palliative Performance Scale score <30%, anticipated prognosis of <1 month, and were referred for end-of-life care (all p < 0.001). The adjusted odds of dying in hospital was 1.24-times higher among patients without cancer (95% CI: 1.05–1.46; p = 0.011). Though the proportion of patients without cancer who died in hospital decreased by 8.4% from 2013 to 2019, this proportion (41.2%) remained substantially higher compared to patients with cancer (14.0%) in 2019. Conclusions: Hospitalized patients without cancer were referred to specialist palliative care at a lower functional status, a poorer anticipated prognosis, and more likely for end-of-life care; and were more likely to die in hospital. Future studies are required to determine whether a proportion of hospital deaths in patients without cancer represent goal-discordant end-of-life care.

Relieving Perception of Thirst and Xerostomia in Patients with Palliative and End-of-life Care Needs: A Rapid Review.

Thirst and dry mouth are interlinked symptoms that frequently cause significant distress for patients with life-limiting conditions. The objective of this rapid review was to identify and synthesize effective interventions that relieve perceptions of thirst and dry mouth of patients with palliative care and end-of-life care needs. Eligible studies were undertaken in clinical settings, with patients experiencing thirst-related distress and/or dry mouth. This review of peer-reviewed literature was conducted following aspects of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines. The main outcomes of interest were: 1) efficacy of thirst and dry mouth interventions for patient, and 2) patient, caregiver, and staff acceptability and satisfaction of the interventions. Scientific journal articles were retrieved through searches in electronic databases of MEDLINE (Ovid), CINAHL (EBSCO), and AgeLine (EBSCO). Eleven studies were included for analysis and synthesis of the results. Most studies either focused on a dry mouth intervention or reported dry mouth outcomes within a broader thirst intervention (n=9/11 studies). Standard oral care was the common intervention type (n=5/11). All but one dry mouth intervention reported statistical improvement in outcomes of interest. All studies that reported on thirst were conducted in an Intensive Care Unit (ICU) setting (n=4/4). No studies specifically addressed thirst in patients in specialist palliative care settings. Evidence from this review suggests that thirst interventions established within the ICU setting may prove effective for treatment of terminally ill patients receiving specialist palliative care.

Specialist Palliative Care Referral Practices Among Oncologists, Cardiologists, Respirologists: A Comparison of National Survey Studies.

Although patients with nonmalignant diseases have palliative care needs similar to those of cancer patients, they are less likely to receive specialist palliative care (SPC). Referral practices of oncologists, cardiologists, and respirologists could provide insight into reasons for this difference. We compared referral practices to SPC among cardiologists, respirologists, and oncologists, discerned from surveys (the Canadian Palliative Cardiology/Respirology/Oncology Surveys). Descriptive comparison of survey studies; multivariable linear regression analysis of association between specialty and referral frequency. Surveys for each specialty were disseminated to physicians across Canada in 2010 (oncologists) and 2018 (cardiologists, respirologists). The combined response rate of the surveys was 60.9% (1568/2574): 603 oncologists,534 cardiologists, and431 respirologists. Perceived availability of SPC services was higher for cancer than for noncancer patients. Oncologists were more likely to make a referral to SPC for a symptomatic patient with a prognosis of <one year. Cardiologists and respirologists were more likely to make a referral to services at a prognosis of <one month; and to refer earlier if palliative care was renamed supportive care.Cardiologists and respirologists had a lower frequency of referrals than oncologists, adjusting for demographic and professional characteristics (P < 0.0001 in both groups). For cardiologists and respirologists in 2018, perceived availability of SPC services was poorer, timing of referral later, and frequency of referral lower than among oncologists in 2010. Further research is needed to identify reasons for differences in referral practices and to develop interventions to overcome them.

Palliative care utilization across health sectors for patients with gynecologic malignancies in Ontario, Canada from 2006 to 2018

ObjectiveEarly palliative care (PC) is associated with improved patient quality of life, less aggressive end-of-life care, and prolonged survival. We evaluated patterns of PC delivery in gynecologic oncology. MethodsWe conducted a population-based, retrospective cohort study of gynecologic cancer decedents in Ontario from 2006 to 2018 using linked administrative health care data. ResultsThe cohort included 16,237 decedents; 51.1% died of ovarian cancer, 30.3% uterine cancer, 12.1% cervical cancer, and 6.5% vulvar/vaginal cancers. Palliative care was most often delivered in the hospital inpatient setting in 81%, and 53% received specialist PC. PC was first received during hospital admission in 53%, and by outpatient physician care in only 23%. Palliative care was initiated a median 193 days prior to death, with the lowest two quintiles initiating care ≤70 days before death. The average user of PC resources (third quintile) received 68 days of PC. While cumulative use of community PC gradually increased over the final year of life, institutional palliative care use exponentially rose from 12 weeks until death. On multivariable analyses, predictors of initiating palliative care during a hospital admission included age ≥70 years at death, ≤3 month cancer survival, having cervical or uterine cancer, not having a primary care provider, or being in the lowest 3 income quintiles. ConclusionMost palliative care is initiated and delivered during hospital admission, and is initiated late in a significant proportion. Strategies to increase access to anticipatory and integrated palliative care may improve the quality of the disease course and the end of life.

‘The palliative care ambulance’: A qualitative study of patient and caregiver perspectives of an ambulance service

Background: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. Aim: To explore patient and family caregiver experiences of paramedics’ contribution to palliative care at home. Design: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. Setting/participants: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. Results: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. Conclusion: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner.

Specialist Palliative Care Consultation for Patients with Nonmalignant Pulmonary Diseases: A Retrospective Study.

Few patients with chronic nonmalignant pulmonary diseases receive specialist palliative care consultation, despite their high symptom burden in end of life. To study palliative care decision making, survival, and hospital resource usage in patients with nonmalignant pulmonary diseases with or without a specialist palliative care consultation. A retrospective chart review of all patients with a chronic nonmalignant pulmonary disease and a palliative care decision (palliative goal of therapy), who were treated in Tampere University Hospital, Finland, between January 1, 2018 and December 31, 2020. A total of 107 patients were included in the study, 62 (58%) had chronic obstructive pulmonary disease (COPD), and 43 (40%) interstitial lung disease (ILD). Median survival after palliative care decision was shorter in patients with ILD than in patients with COPD (59 vs. 213 days, p = 0.004). Involvement of a palliative care specialist in the decision making was not associated with the survival. Patients with COPD who received palliative care consultation visited less often emergency room (73% vs. 100%, p = 0.019) and spent fewer days in the hospital (7 vs. 18 days, p = 0.007) during the last year of life. When a palliative care specialist attended the decision making, the presence and opinions of the patients were recorded more often, and the patients were more frequently referred to a palliative care pathway. Specialist palliative care consultation seems to enable better end-of-life care and supports shared decision making for patients with nonmalignant pulmonary diseases. Therefore, palliative care consultations should be utilized in nonmalignant pulmonary diseases preferably before the last days of life.

Potentially inappropriate prescribing in older adults with cancer receiving specialist palliative care: a retrospective observational study.

Older adults (≥ 65years) with cancer receiving palliative care often have other health conditions requiring multiple medications. To describe and assess the appropriateness of prescribing for older adults with cancer in the last seven days of life in an inpatient palliative care setting. Retrospective observational study of medical records for 180 patients (60.6% male; median age: 74years; range 65-94years) over a two-year period. Medication appropriateness was assessed using: STOPPFrail, OncPal deprescribing guideline and criteria for identifying Potentially Inappropriate Prescribing in older adults with Cancer receiving Palliative Care (PIP-CPC). 94.5% of patients had at least one other health condition (median 3, IQR 2-5). The median number of medications increased from five (IQR 3-7) seven days before death, to 11 medications on the day of death (IQR 9-15). The prevalence of PIP varied depending on the tool used: STOPPFrail (version 1: 17.2%, version 2: 19.4%), OncPal (12.8%), PIP-CPC (30%). However, the retrospective nature of the study limited the applicability of the tools. Increasing number of medications had a statistically significant effect on risk of PIP across all tools (STOPPFrail (version 1: 1.29 (1.13-1.37), version 2: 1.30 (1.16-1.48)); OncPal 1.13 (1.01-1.27); PIP-CPC 0.70 (0.61-0.82)). This study found that the number of medications prescribed to older adults with cancer increased as time to death approached, and the prevalence of PIP varied with the application of different tools. The study also highlights the difficulties of examining PIP in this patient cohort.

Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study.

Patient-reported experience measures (PREMs) are questionnaires that ask patients about their experience of healthcare to inform service improvements. It is unclear how palliative care patients manage the cognitive demands of completing PREMs, or how this can best be supported. This study aimed to explore cognitive operations among people with palliative care needs when completing a PREM focused on the care domains known to be important to this patient population in order to inform future administration of questionnaires for this purpose. A qualitative approach was taken, using cognitive interviews. Participants were people receiving specialist palliative care with stable disease who were not bedbound. Interviews used 'think aloud' and verbal probes to explore the cognitive operations of comprehension, recall, judgement and response to a 33-item PREM, drafted using a standard process employed by the New South Wales Bureau of Health Information. Analysis proceeded first within- and then cross-cases to explore patterns. Fifteen people participated, all of whom had cancer except one with motor neuron disease. Six discussed inpatient care, and nine community care. Participants encountered challenges with all four cognitive operations. Many participants were unfamiliar with end-of-life care concepts like declining treatment and advance care planning. Participants often struggled to remember, answered hypothetically, or digressed beyond the focal setting. Few participants used the mid-point on a 3-point scale. However, all participants could complete two open-ended items on care aspects they regarded as 'best' or 'most needs improving'. Palliative care patients find PREMs challenging to complete and require supports to improve the quality and interpretability of data. Pending further research, tentative suggestions are made for PREM design and administration for this patient population.