Specialist Palliative Services Research Articles

Place of death among children from 0 to 17 years of age: A population-based study from Sweden.

The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age. We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors. Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%). Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.

Hematologic Malignancies Patients Face High Symptom Burden and Are Lately Referred to Palliative Consultation: Analysis of a Single Center Experience.

Although hematologic neoplasms have been on the vanguard of cancer therapies that led to notable advances in therapeutic efficacy, many patients face significant symptom burden, which make them eligible for early palliative care (PC) integration. However, previous reports demonstrated that hematological malignancies receive more aggressive care at the end-of-life and are less likely to receive care from specialist palliative services compared to solid tumors. Our aim was to characterize symptom burden, performance status and clinical characteristics of a cohort of hematologic malignancies patients referred toPCoutpatient consultation, according to their diagnosis. Fifty-nine hematological malignancies patients referred toPCconsultation between January 2018 and September 2021 were included. Clinical and laboratory data were evaluated retrospectively by medical charts analysis. Patients exhibited high ESAS and reduced PPS scores at the time ofPCreferral. Acute leukemia and multiple myeloma patients had the highest symptom burden scores; in spite of this, median time from the firstPCconsultation until death was only 3 and 4 months, respectively. In conclusion, we identified that hematologic neoplasms patients are highly symptomatic and are frequently referred toPCin end stages of their disease.

PEARL: A randomised phase 3 trial of palliative care early in advanced lung cancers (ALTG/TOGA 13/008).

12020 Background: Early referral to palliative care was associated with improved health-related quality of life (HRQL) and overall survival (OS) in a US phase 3 trial in lung cancer patients (pts). International studies in mixed cancer types have reported conflicting results. PEARL aimed to determine whether early referral to palliative care would improve HRQL, OS, and resource use in Australian pts with recently diagnosed, advanced thoracic cancers. Methods: Eligible participants (pts) in this unblinded, multi-centre, randomised, phase 3 trial had advanced thoracic cancers diagnosed within 60 days, and the ability to complete patient-rated outcome measures (PROMS). Pts were randomly allocated to early referral to palliative care (ER) or referral at clinician’s discretion (DR). All pts received standard oncological care. PROMS were completed at baseline, every 3-4 weeks for 6 months, then 6-8 weekly. The primary objective was to determine the frequency of sustained, substantial improvements in HRQL, defined as a 5-point improvement in the FACT-L Trial Outcome Index (TOI) maintained for at least 2 consecutive assessments. Secondary outcomes included OS, documentation of advanced care plan (ACP), PROM scores at 12 weeks, anxiety/depression (PROMIS-ED), lung cancer symptoms (FACT-L), global HRQL (ICECAP-SCM), carer-satisfaction and burden, and understanding of illness and prognosis. The accrual target of 200 gave 80% power (alpha 0.05) to detect an absolute improvement of 20% in the proportion of pts achieving the primary endpoint. Results: 113 pts and 78 carers were recruited when the trial closed for slow accrual. Pt characteristics were well balanced: 88 (75%) had NSCLC, 18 (16%) small cell and 7 (6%) mesothelioma. Median age was 69 (IQR 62-74), 63 (56%) were male; systemic anti-cancer therapy ongoing or planned in 88 (78%). Median follow-up was 30 months. First consultations with a palliative care specialist within 60 days of diagnosis occurred in more pts assigned ER vs DR (57% vs 3.5%). Sustained substantial improvements in FACT-L TOI were reported by similar numbers of pts assigned ER vs DR: 33% vs 32%, p = 0.9. OS was similar among those assigned ER versus DR (median 12 vs 18.4 months, p = 0.11). A similar % had a written advanced care plan at death: 15/40 (39%) vs 15/33 (47%). We found no important differences between arms in global HRQL (ICECAP-SCM), depression/anxiety (PROMIS-ED), lung cancer symptoms (FACT-L), carer satisfaction (FAMCARE-2), carer burden (CRA), or understanding of illness by carers or pts. Conclusions: Early referral to palliative care, compared with discretionary referral, did not improve important outcomes for Australian thoracic cancer pts or carers. Our findings suggest that the palliative care needs of such pts were addressed equally well by delayed referral when clinically indicated, resulting in reduced burden for resource-limited specialist palliative services. Clinical trial information: ACTRN12617000166370.

Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study.

SummaryObjectiveTo explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic.DesignQualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis.SettingOrganisations providing specialist palliative services in any setting.ParticipantsStaff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience.Main outcome measuresExperiences of working in palliative care during the COVID-19 pandemic.ResultsFive cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants’ ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a ‘crescendo effect’ in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided ‘moral comfort’ for some.ConclusionsThis study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts.

Access to specialist palliative care services by people with severe and persistent mental illness: A retrospective cohort study.

Compared to the general population, people with pre-existing serious and persistent mental illness (SPMI) have higher rates of physical illness and die at an earlier age, raising questions about their palliative and end-of-life care needs when they are diagnosed with an incurable physical illness. In the present study, we explored access to specialist palliative care services within one New Zealand health district. Routinely-collected, de-identified patient information on a cohort of people diagnosed with SPMI, and receiving specialist palliative care services from the Capital and Coast District Health Board (CCDHB), was compared to the general population from the same health district. People with SPMI are 3.5 times less likely to receive specialist palliative services compared to the general population from the Capital and Coast District Health Board. The proportion of people identifying as Māori is 1.2 times higher in the SPMI cohort than the general CCDHB population. The SPMI cohort experiences a higher level of deprivation compared to the general population in the CCDHB. The present study confirms that those diagnosed with an SPMI are less likely to use specialist palliative care services at the end of life. Research using a national dataset is needed to determine whether the study findings are applicable to the national population.

Knowledge and perceptions of palliative care among oncology outpatients.

118 Background: Palliative care is emerging as an integral component of oncology care. There is growing evidence of its benefits but providers struggle with how to integrate specialist palliative services for the oncology population. The purpose of this study was to measure patients’ knowledge and perceptions, and their intention to seek palliative services. This study helps inform and guide oncology and palliative providers in their efforts to bridge the gap for oncology patients. Methods: The study used a cross-sectional design. A convenience sample of adult oncology patients using ambulatory cancer services at a community hospital was surveyed using the Knowledge of Care Options (KOCO) and Perceptions of Palliative Care Instrument (PPCI). Clinical information was abstracted from their health records retrospectively. Descriptive statistics were used to describe all variables. The association between knowledge, perceptions, and intention was analyzed using Pearson’s r correlation and multivariate regression analysis. Results: The majority of the 139 participants enrolled were female (61.9%), white (76.7%), and had good functional status with ECOG of 0 or 1 (87.1%). Mean age was 63.4 years. The mean KOCO score was 84.4% although several items scored less than 70%. Overall intention to seek palliative care was low at 2.53 on a seven point scale; a majority of patients indicated that they were unlikely to seek palliative care. There was a positive correlation between overall perception and intention to seek palliative care in the next three months (r = 0.212, p = 0.02).In addition, patients with higher scores on perceived needs for palliative care were more likely to report an intention to seek palliative care (r = 0.308, p = 0.001). Conclusions: There remains a knowledge deficit about palliative care in the oncology population. Participants did not experience negative emotional or cognitive reactions in response to information about palliative care. Perceived needs were associated with intention to seek palliative care services. Routine screening for needs and effective educational strategies are needed to better integrate palliative and oncology care.

From PRO screening to improved wellness: A nurse-led intervention.

72 Background: Emotional and physical distress in cancer patients is underreported and undertreated. In effort to address this, the Quality Oncology Practice Initiative (QOPI) requires patients to be screened for emotional well-being and pain by their second oncology visit. This project details one cancer center’s quality improvement initiative to: (1) utilize patient reported outcomes (PRO) screening to identify patient distress, (2) develop adaptive nurse-led algorithms to assess and intervene for unmet needs. Methods: In June 2015, we launched electronic collection of PROs using the Patient Reported Outcome Measurement Instrument System (PROMIS) global screen. Screening is completed via EMR patient portal prior to first return visit and 30-day intervals thereafter. A nurse-led algorithm categorizing distress was developed with evidence-based clinical pathways for care. Pathways optimize primary palliative care and referrals to specialist palliative services when appropriate. In August 2015, we will randomize four nurse navigators in gynecologic oncology to test the algorithm and make adaptations for scaling cancer center wide. We will assess the percent of patients screening positive for distress and the rate of primary palliative care interventions (e.g., symptom management and psychosocial support). We will also assess rate of referral to specialist palliative teams. Finally, we will interview a subset of patients to compare self-reported need, clinical management of needs, and whether needs were managed to the patient’s satisfaction. Results: We expect to report on adoption and adaptation of the algorithm for disease-specific groups. We will also report rates of primary palliative care interventions, referrals to specialist palliative care and PROs. Conclusions: Standard screening using PROs and clinical care pathways may foster early identification and management of patient’s psychosocial and physical needs. Support for oncology nurses to lead assessment and connect patients with resources is an opportunity to incorporate primary palliative care into oncology practice. The use of structured, adaptive, novel algorithms is a promising approach to meet patient needs and improve access to supportive resources.

Palliative Care in Advanced Lung Disease: The Challenge of Integrating Palliation Into Everyday Care

The tendency toward "either/or" thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic illness. Calls for improved palliation in chronic lung disease mandate a review of related care gaps and current clinical practices. Although specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex, care paradigm can be a challenge. Instead, we propose a more holistic, patient-centered approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach, we review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centered communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients' increasing dependency on episodic ED care to deal with preventable episodic crises and refractory dyspnea. We address this issue as part of a proposed model of care that provides proactive, collaborative case management and the appropriate and carefully monitored use of opioids. We encourage and support a renewed primary care resolve to integrate palliative approaches to care in advanced lung disease that, in concert with judicious referral to appropriate specialist palliative care services, is fundamental to what should be a more sustainable systematic improvement in palliative care delivery.

Guideline on the management of primary resistant and relapsed classical Hodgkin lymphoma

Summary of key recommendations ● Repeat biopsy is generally recommended in Hodgkinlymphoma (HL) patients thought to have relapsed, andshould be considered in those who have residual fluoro-deoxyglucose (FDG)-avid lesions post-therapy (1C).● Positron-emission tomography/computerized tomogra-phy (PET-CT) is the preferred restaging modality aftersalvage therapy (1B).● The aim of salvage treatment should be to achieve anFDG-PET-negative remission (1B).● The choice of a first-line salvage regimen in patients eli-gible for autologous stem cell transplantation (ASCT)should be based on patient factors and familiarity ofthe treatment centre with the regimen (2C).● Regimens containing stem cell toxic agents (such as car-mustine and melphalan) should be avoided if possibleuntil stem cells have been successfully collected andcryopreserved if ASCT is planned (1B).● There is currently no evidence to support intensivesequential induction/consolidation strategies prior toASCT (1B).● Consider switching to an alternative non-cross-resistantsalvage regimen if there are residual FDG-avid lesionsafter first line salvage treatment and the intent is toproceed to ASCT (2B).● In patients not eligible for ASCT, combined modalitytherapy should be considered especially in early stagerelapse and in patients who have not received priorradiotherapy or who have relapsed outside of the initialradiotherapy field (2B).● In patients unlikely to tolerate the toxicities associatedwith more intensive regimens, palliation with either a sin-gle agent or with a multi-agent oral regimen with or with-out intravenous vinblastine should be considered (2C).● Early consideration of involvement of palliative care ser-vices is recommended, particularly in those not eligiblefor high dose therapy (1C).● ASCT is the standard treatment for patients withrelapsed disease who achieve an adequate response tosalvage therapy (1A).● ASCT is also the standard treatment for patients withprimary resistant disease who achieve an adequateresponse to salvage therapy (1B).● ASCT is not recommended in those failing to achievean adequate response (1B).Guideline

Palliative Care Is Everyone's Business, Including Pharmacists

Palliative Care Is Everyone's Business, Including Pharmacists

The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: a systematic review.

The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: a systematic review.