Acceptability of automatic referrals to supportive and palliative care by patients living with advanced lung cancer: qualitative interviews and a co-design process.

PURPOSE: Timely access to supportive and palliative care (PC) remains a challenge. A proposed solution is to trigger an automatic referral process to PC by pre-determined clinical criteria. This study sought to co-design with patients and providers an automatic PC referral process for patients newly diagnosed with stage IV lung cancer. METHODS: In Step 1 of this work, nine one on one phone interviews were conducted with advanced lung cancer patients on their perspectives on the acceptability of phone contact by a specialist PC provider triggered by an automatic referral process. Interviews were thematically analysed. Step 2: Patient advisors, healthcare providers (oncologists, nurses from oncology and PC, clinical social worker, psychologist), and researchers were invited to join a working group to provide input on the development and implementation of the automatic referral process. The group met biweekly (virtually) over the course of six months. RESULTS: From interviews, the concept of an automatic referral process was perceived to be acceptable and beneficial for patients. Participants emphasized the need for timely support, access to peer and community resources. Using these findings, the co-design working group identified eligibility criteria for identifying newly diagnosed stage IV lung cancer patients using the cancer centre electronic health record, co-developed a telephone script for specialist PC providers, handouts on supportive care, and interview and survey guides for evaluating the implemented automatic process. CONCLUSION: A co-design process ensures stakeholders are involved in program development and implementation from the very beginning, to make outputs relevant and acceptable for stage IV lung cancer patients.

Care Coordination Between Family Physicians and Palliative Care Physicians for Patients With Cancer: Results of a Quality Improvement Initiative.

PURPOSE: At our institution's cancer palliative care (PC) clinic, new referrals from oncologists were scheduled for consultation and ongoing follow-up by PC physicians without input from the patients' family physicians (FPs). FPs reported that they felt out of the loop. We implemented a quality improvement (QI) initiative aimed at systematically facilitating care coordination between FPs and PC physicians. METHODS: A coordination toolkit was sent from the PC physician to the FP whenever the PC physician received a consultation request from an oncologist. The toolkit included an introduction to the PC physician team; an opportunity for the FP to choose how best to collaborate with PC physicians to meet the patient's PC needs; and contact information for access to 24/7 PC physician support. Responses from FPs regarding their preferred level of engagement with PC determined further care planning in the clinic. We measured feasibility, response rate, and qualitative surveys of FPs about the usefulness of the intervention. RESULTS: Two hundred fourteen new consultations were eligible for a standardized letter over the 6-month implementation period. Feasibility for sending the toolkit was 90.0% and response rate for collaborative care preference from FPs was 86.0%, with median response time of 3-4 days. 78.9% of FPs indicated they would prefer ongoing consultative care by the PC physician, while 18.6% indicated that PC physician consultation was not needed, or that the FP would provide primary PC after a one-time PC physician consultation. CONCLUSION: We successfully implemented a QI initiative to improve care coordination between FPs and PC physicians for patients with cancer. The coordination toolkit can protect the patient-FP primary PC relationship and optimize specialist PC resource utilization for complex patients.

Sex-Based Analysis of Quality Indicators of End-of-Life Care in Gastrointestinal Malignancies.

Indices of aggressive or supportive end-of-life (EOL) care are used to evaluate health services quality. Disparities according to sex were previously described, with studies showing that male sex is associated with aggressive EOL care. This is a secondary analysis of 69,983 patients who died of a GI malignancy in Ontario between 2006 and 2018. Quality indices from the last 14-30 days of life and aggregate measures for aggressive and supportive EOL care were derived from administrative data. Hospitalizations, emergency department use, intensive care unit admissions, and receipt of chemotherapy were considered indices of aggressive care, while physician house call and palliative home care were considered indices of supportive care. Overall, a smaller proportion of females experienced aggressive care at EOL (14.3% vs. 19.0%, standardized difference = 0.13, where ≥0.1 is a meaningful difference). Over time, rates of aggressive care were stable, while rates of supportive care increased for both sexes. Logistic regression showed that younger females (ages 18-39) had increased odds of experiencing aggressive EOL care (OR 1.71, 95% CI 1.30-2.25), but there was no such association for males. Quality of EOL care varies according to sex, with a smaller proportion of females experiencing aggressive EOL care.

Colorectal Cancer Patients' Reported Frequency, Content, and Satisfaction with Advance Care Planning Discussions.

(1) Background: This observational cohort study describes the frequency, content, and satisfaction with advance care planning (ACP) conversations with healthcare providers (HCPs), as reported by patients with advanced colorectal cancer. (2) Methods: The patients were recruited from two tertiary cancer centers in Alberta, Canada. Using the My Conversations survey with previously validated questions, the patients were asked about specific ACP elements discussed, with which HCPs these elements were discussed, their satisfaction with these conversations, and whether they had a goals of care designation (GCD) order. We surveyed and analyzed data from the following four time points: enrollment, months 1, 2, and 3. (3) Results: In total, 131 patients were recruited. At enrollment, 24% of patients reported discussing at least one ACP topic. From enrollment to month 3, patients reported a high frequency of discussions (80.2% discussed fears, 71.0% discussed prognosis, 54.2% discussed treatment preferences at least once); however, only 44.3% of patients reported discussing what is important to them in considering health care preferences. Patients reported having ACP conversations most often with their oncologists (84.7%) and cancer clinic nurses (61.8%). Patients reported a high level of satisfaction with their ACP conversations, with over 80% of patients reported feeling heard and understood. From enrollment to month 3, there was an increase in the number of patients with a GCD order from 53% to 74%. (4) Conclusions: Patients reported more frequent conversations compared to the literature and clinical documentation. While the satisfaction with these conversations is high, there is room for quality improvement, particularly in eliciting patients' personal goals for their treatment.

Non-steroidal anti-inflammatory drugs for pain in hospice/palliative care: an international pharmacovigilance study.

OBJECTIVES: To describe the current, real-world use of non-steroidal anti-inflammatory drugs for pain and the associated benefits and harms. METHODS: A prospective, multicentre, consecutive cohort pharmacovigilance study conducted at 14 sites across Australia, Aotearoa/New Zealand and the UK including hospital, hospice inpatient and outpatient services. Pain scores and harms were graded using the National Cancer Institute Common Terminology Criteria for Adverse Events at baseline, 2 days and 14 days. Ad-hoc safety reporting continued until day 28. RESULTS: Data were collected from 92 patients between March 2018 and October 2021. Most patients had cancer (91%) and were coprescribed opioids (90%). At 14 days, 83% of patients had benefit from non-steroidal anti-inflammatory drugs and 22% had harm. The most common harms were nausea (8%), vomiting (3%), acute kidney injury (3%) and non-gastrointestinal bleeding (3%); only 2% were severe and no patients ceased their non-steroidal anti-inflammatory drugs due to toxicity. Overall, 65% had benefit without harm and 3% had harm without benefit. CONCLUSIONS: Most patients benefited from non-steroidal anti-inflammatory drugs with only one in five patients experiencing tolerable harm. This suggests that short-term use of non-steroidal anti-inflammatory drugs in patients receiving palliative care is safer than previously thought and may be underused.

Tertiary Inpatient Palliative Care within Region-Wide Services: A Retrospective Examination of Psychosocial and Medical Demographics at Admissions.

Palliative care offers symptom relief and improved quality of life. Tertiary palliative care units (TPCUs) focus on complex suffering under the care of specialist palliative physicians and interdisciplinary teams. The Intensive Palliative Care Unit (IPCU) is a TPCU integrated in well-developed region-wide palliative services in Calgary, Canada. We compared the population accessing the IPCU to published data from other Canadian sites. METHODS: A retrospective chart review was conducted using 8 sample months over a 2-year period. We gleaned psychosocial and medical demographics alongside the self-reported symptom burden on the Edmonton Symptom Assessment System. Descriptive statistics were calculated. RESULTS: Adults (n = 117) with cancer admitted to the IPCU were 5-10 years younger, had later-stage cancer, and had higher discharges to preferred locations than other published Canadian TPCUs. Up to two months before admission, most commonly reported symptoms were consistent with the outpatient literature although with higher reported intensity. DISCUSSION: With more advanced disease, younger age, and elevated symptom burden before admission, the IPCU still discharged patients to preferred locations at higher rates than other sites. This may be due to integration in the region's organized palliative care services. CONCLUSION: With proper integration, a TPCU may be able to improve quality of life and reduce deaths in hospitals.

Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol.

BACKGROUND: Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. METHODS: This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants' experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. DISCUSSION: This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.

Safe Prescribing Practices: Clinicians' Views on Prescribing Opioids to Patients With Early-Stage Cancer.

PURPOSE: Opioids are often necessary for patients experiencing high-intensity pain. However, side effects exist and some patients may misuse opioids. To better understand how opioids are prescribed to patients with early-stage cancer and how to enhance opioid safety, clinicians' views of opioid prescribing were explored. METHODS: This was a qualitative inquiry including any Alberta clinician prescribing opioids to patients with early-stage cancer. Semistructured interviews were conducted with nurse practitioners (NP), medical oncologists (MO), radiation oncologists (RO), surgeons (S), primary care physicians (PCP), and palliative care physicians (PC) between June 2021 and March 2022. Interpretive description was used to analyze the data using two coders (C.C. and T.W.). Debriefing sessions were used to resolve and discrepancies. RESULTS: Twenty-four clinicians were interviewed (NP [n = 5], MO [n = 4], RO [n = 4], S [n = 5], PCP [n = 3], and PC [n = 3]). The majority had been in practice at least 10 years. Prescribing practices were related to disciplinary perspective, goals of care, patient condition, and resource availability. Most clinicians did not see opioid misuse as a problem but were aware that specific patient risk factors are present and that long-term use can be problematic. Most clinicians undertake safe prescribing approaches tacitly (eg, screening for past opioid misuse and reviewing number of prescribers) and not all agreed they should be universally applied. Barriers (eg, procedural and time) and facilitators (eg, education) to safe prescribing approaches were identified. CONCLUSION: To enhance uptake and cross-disciplinary consistency of safe prescribing approaches, clinician education regarding opioid misuse and benefits of safe prescribing practices, and addressing procedural barriers are necessary.

Association between Consultation by a Comprehensive Integrated Palliative Care Program and Quality of End-of-Life Care in Patients with Advanced Cancer in Edmonton, Canada.

Literature assessing the impact of palliative care (PC) consultation on aggressive care at the end of life (EOL) within a comprehensive integrated PC program is limited. We retrospectively reviewed patients with advanced cancer who received oncological care at a Canadian tertiary center, died between April 2013 and March 2014, and had access to PC consultation in all healthcare settings. Administrative databases were linked, and medical records reviewed. Composite score for aggressive EOL care was calculated, assigning a point for each of the following: ≥2 emergency room visits, ≥2 hospitalizations, hospitalization >14 days, ICU admission, and chemotherapy administration in the last 30 days of life, and hospital death. Multivariable logistic regression was adjusted for age, sex, income, cancer type and PC consultation for ≥1 aggressive EOL care indicator. Of 1414 eligible patients, 1111 (78.6%) received PC consultation. In multivariable analysis, PC consultation was independently associated with lower odds of ≥1 aggressive EOL care indicator (OR 0.49, 95% CI 0.38−0.65, p < 0.001). PC consultation >3 versus ≤3 months before death had a greater effect on lower aggressive EOL care (mean composite score 0.59 versus 0.88, p < 0.001). We add evidence that PC consultation is associated with less aggressive care at the EOL for patients with advanced cancer.

Patient & Caregiver Experiences: Qualitative Study Comparison Before and After Implementation of Early Palliative Care for Advanced Colorectal Cancer.

BACKGROUND: The Palliative Care Early and Systematic (PaCES) program implemented an early palliative care pathway for advanced colorectal cancer patients in January 2019, to increase specialist palliative care consultation and palliative homecare referrals more than three months before death. This study aimed to understand the experience of patients with advanced colorectal cancer and family caregivers who received early palliative care supports from a specialist palliative care nurse and compared those experiences with participants who experienced standard oncology care prior to implementation of early palliative care. METHODS: This was a qualitative and patient-oriented study. We conducted semi-structured telephone interviews with two cohorts of patients with advanced colorectal cancer before and after implementation of an early palliative care pathway. We conducted a thematic analysis of the transcripts guided by a Person-Centred Care Framework. RESULTS: Seven patients living with advanced colorectal cancer and five family caregivers who received early palliative care supports expressed that visits from their early palliative care nurse was helpful, improved their understanding of palliative care, and improved their care. Four main themes shaped their experience of early palliative care: care coordination, perception of palliative care & advance care planning, coping with advanced cancer, and patient and family engagement. These findings were compared with experiences of 15 patients and seven caregivers prior to pathway implementation. CONCLUSION: An early palliative care pathway can improve advanced cancer care, and improve understanding and acceptance of early palliative care. This work was conducted in the context of colorectal cancer but may have relevance for the care of other advanced cancers.

Palliative Care Use in Patients With Acute Myocardial Infarction and Do-Not-Resuscitate Status From a Nationwide Inpatient Cohort.

OBJECTIVE: To examine the predictors, treatments, and outcomes of the use of palliative care in patients hospitalized with acute myocardial infarction (AMI) who had a do-not-resuscitate (DNR) order. PATIENTS AND METHODS: Using the National (Nationwide) Inpatient Sampling database for 2015-2018, we examined the predictors, in-hospital procedures, and outcomes of palliative care recipients among patients with AMI who had a DNR order. RESULTS: We identified 339,270 admissions with AMI that had a DNR order, including patients who received palliative care (n=113,215 [33.4%]). Compared with patients who did not receive palliative care, these patients were more frequently younger (median age, 81 vs 83 years; P<.001), were less likely to be female (50.9% [57,626 of 113,215] vs 54.7% [123,652 of 226,055]; P<.001), and were more likely to present with cardiac arrest (11.6% [13,133 of 113,215] vs 6.9% [15,598 of 226,055]; P<.001). Patients were more likely to receive palliative care at a large (odds ratio [OR], 1.47; 95% CI, 1.44 to 1.50) or teaching (OR, 2.10; 95% CI, 2.04 to 2.16) hospitals compared with small or rural ones. Patients receiving palliative care were less likely to be treated invasively, with reduced rates of invasive coronary angiography (OR, 0.46; 95% CI, 0.45 to 0.47) and percutaneous coronary intervention (OR, 0.47; 95% CI, 0.45 to 0.48), and were more likely to die in the hospital (52.4% [59,325 of 113,215] vs 22.9% [51,766 of 226,055]). CONCLUSION: In patients who had a DNR status and were hospitalized and received a diagnosis of AMI, only one-third received palliative care.

Quality of End-of-Life Care in Gastrointestinal Cancers: A 13-Year Population-Based Retrospective Analysis in Ontario, Canada.

Population-based quality indicators of either aggressive or supportive care at end of life (EOL), especially when specific to a cancer type, help to inform quality improvement efforts. This is a population-based, retrospective cohort study of gastrointestinal (GI) cancer decedents in Ontario from 1 January 2006-31 December 2018, using administrative data. Quality indices included hospitalizations, emergency department (ED) use, intensive care unit admissions, receipt of chemotherapy, physician house call, and palliative home care in the last 14-30 days of life. Previously defined aggregate measures of both aggressive and supportive care at end of life were also used. In our population of 69,983 patients who died of a GI malignancy during the study period, the odds of experiencing aggressive care at EOL remained stable, while the odds of experiencing supportive care at EOL increased. Most of our population received palliative care in the last year of life (n = 65,076, 93.0%) and a palliative care home care service in the last 30 days of life (n = 45,327, 70.0%). A significant number of patients also experienced death in an acute care hospital bed (n = 28,721, 41.0%) or had a new hospitalisation in the last 30 days of life (n = 33,283, 51.4%). The majority of patients received palliative care in the last year of life, and a majority received a palliative care home service within the last 30 days of life. The odds of receiving supportive care at EOL have increased over time. Differences in care exist according to income, age, and rurality.

The impacts of partnering with cancer patients in palliative care research: a systematic review and meta-synthesis.

Background: Palliative care (PC) is an added layer of support provided concurrently with cancer care and serves to improve wellbeing and sustain quality of life. Understanding what is meaningful and a priority to patients, their families, and caregivers with lived experience of cancer and PC is critical in supporting their needs and improving their care provision. However, the impacts of engaging cancer patients within the context of PC research remain unknown. Objective: To examine the impacts of engaging individuals with lived experience of cancer and PC as partners in PC research. Methods: An a priori systematic review protocol was registered with PROSPERO (CRD42021286744). Four databases (APA PsycINFO, CINAHL, EMBASE, and MEDLINE) were searched and only published, peer-reviewed primary English studies aligned with the following criteria were included: (1) patients, their families, and/or caregivers with lived experience of cancer and PC; (2) engaged as partners in PC research; and (3) reported the impacts of engaging cancer PC patient partners in PC research. We appraised the quality of eligible studies using the Critical Appraisal Skills Program (CASP) and GRIPP2 reporting checklists. Results: Three studies that included patient partners with lived experience of cancer and PC engaged at all or several of the research stages were identified. Our thematic meta-synthesis revealed impacts (benefits and opportunities) on patient partners (emotional, psychological, cognitive, and social), the research system (practical and ethical) and health care system (service improvements, bureaucratic attitudes, and inaction). Our findings highlight the paucity of evidence investigating the impacts of engaging patients, their families and caregivers with lived experience of cancer and PC, as partners in PC research. Conclusions: The results of this review and meta-synthesis can inform the more effective design of cancer patient partnerships in PC research and the development of feasible and effective strategies given the cancer and PC context patient partners are coming from.

Paracentesis for cancer-related ascites in palliative care: An international, prospective cohort study.

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.

Trends in quality indicators of end-of-life care for women with gynecologic malignancies in Ontario, Canada.

OBJECTIVE: A large body of research has validated several quality indicators of end-of-life (EOL) cancer care, but few have examined these in gynecologic cancer at a population-level. We examined patterns of EOL care quality in patients with gynecologic cancers across 13 years in Ontario, Canada. METHODS: We conducted a population-based, retrospective cohort study of gynecologic cancer decedents in Ontario from 2006 to 2018 using linked administrative health care databases. Proportions of quality indices were calculated, including: emergency department (ED) use, hospital or intensive care unit (ICU) admission, chemotherapy ≤14 days of death, cancer-related surgery, tube or intravenous feeds, palliative home visits, and hospital death. We used multivariable logistic regression to examine factors associated with receipt of aggressive and supportive care. RESULTS: There were 16,237 included decedents over the study period; hospital death rates decreased from 47% to 37%, supportive care use rose from 65% to 74%, and aggressive care remained stable (16%). Within 30 days of death, 50% were hospitalized, 5% admitted to ICU, and 67% accessed palliative homecare. Within 14 days of death, 31% visited the ED and 4% received chemotherapy. Patients with vulvovaginal cancers received the lowest rates of aggressive and supportive care. Using multivariable analyses, factors associated with increased aggressive EOL care use included younger age, shorter disease duration, lower income quintiles, and rural residence. CONCLUSIONS: Over time, less women dying with gynecologic cancers in Ontario experienced death in hospital, and more accessed supportive care. However, the majority were still hospitalized and a significant proportion received aggressive care in the final 30 days of life.

Quality of end-of-life care in multiple myeloma: A 13-year analysis of a population-based cohort in Ontario, Canada.

Optimizing end-of-life (EOL) care for multiple myeloma (MM) represents an unmet need. An administrative cohort in Ontario, Canada was analysed between 2006 and 2018. Aggressive care was defined as two or more emergency-department visits in the last 30 days before death, or at least two new hospitalizations within 30 days of death, or an intensive care unit (ICU) admission within the last 30 days of life. Supportive care was defined as a physician house-call in the last two weeks before death, or a palliative nursing or personal support visit at home in the last 30 days before death. Among 5095 patients, 23.2% of patients received chemotherapy at EOL and 55.6% of patients died as inpatient. A minority received aggressive care at EOL [28.3%: autologous stem cell transplant (ASCT), 20.4%: non-ASCT], and a majority received supportive care at EOL (65.4%: ASCT, 61.5%: non-ASCT). Supportive care was less likely to be received by those aged over 80 years and in lower-income neighbourhoods. Supportive care at EOL increased from 56.0% in 2006 to 70.3% in 2018. Despite improvements, many patients with MM experience aggressive care at EOL. Even in a publicly funded health care system, disparities based on age, income and community size are present.

Investigating the benefits and harms of hypodermoclysis of patients in palliative care: A consecutive cohort study.

BACKGROUND: Palliative populations are at risk for dehydration which can cause discomfort, distress and cognitive symptoms. Subcutaneous hydration ('hypodermoclysis') has been used as an alternative administration route to the more invasive intravenous route, but research is lacking on its net clinical effects (harms and benefits) for palliative populations, particularly in real world settings. AIM: To quantify prospectively the net clinical effects of hypodermoclysis in palliative patients with advanced disease who required supplementary fluids. DESIGN: Multisite, multinational consecutive cohort study. SETTING/PARTICIPANTS: Patients receiving hypodermoclysis in an inpatient palliative care setting. RESULTS: Twenty sites contributed data for 99 patients, of which 88 had complete benefits and harms data. The most common primary target symptom for infusion was generalised weakness (18.2%), and the most common non-symptom indication was supplemental hydration (31.8%). Benefits were experienced in 33% of patients in their primary target symptom, and in any symptom in 56.8%. Harms were experienced in 38.7% of patients (42% at Grade 1). Benefits increased with higher performance status, while harms were more frequent in patients with lower performance status (Australia-modified Karnofsky performance status ⩽40). Patients in the terminal phase of their illness experienced the least benefit (15.4% in any indication only) and had more frequent harms (38%). CONCLUSIONS: Hypodermoclysis may improve certain symptoms in patients in palliative care but frequency of harms and benefits may differ at certain timepoints in the illness trajectory. Further research is needed to better delineate which patients will derive the most net clinical benefit from hypodermoclysis.

Pharmacovigilance in hospice/palliative care: Net effect of amitriptyline or nortriptyline on neuropathic pain: UTS/IMPACCT Rapid programme international consecutive cohort.

BACKGROUND: Real-world effectiveness of interventions in palliative care need to be systematically quantified to inform patient/clinical decisions. Neuropathic pain is prevalent and difficult to palliate. Tricyclic antidepressants have an established role for some neuropathic pain aetiologies, but this is less clear in palliative care. AIM: To describe the real-world use and outcomes from amitriptyline or nortriptyline for neuropathic pain in palliative care. DESIGN: An international, prospective, consecutive cohort post-marketing/phase IV/pharmacovigilance/quality improvement study of palliative care patients with neuropathic pain where the treating clinician had already made the decision to use a tricyclic antidepressant. Data were entered at set times: baseline, and days 7 and 14. Likert scales graded benefits and harms. SETTING/PARTICIPANTS: Twenty-one sites (inpatient, outpatient, community) participated in six countries between June 2016 and March 2019. Patients had clinician-diagnosed neuropathic pain. RESULTS: One hundred and fifty patients were prescribed amitriptyline (110) or nortriptyline (40) of whom: 85% had cancer; mean age 73.2 years (SD 12.3); mean 0-4 scores for neuropathic pain at baseline were 1.8 (SD 1.0). By day 14, doses of amitriptyline were 57 mg (SD 21) and nortriptyline (48 mg (SD 21). Fifty-two (34.7%) patients had pain improvement by day 14 (amitriptyline (45/110 (43.3%); nortriptyline (7/40 (18.9%)). Thirty-nine (27.7%) had new harms; (amitriptyline 29/104 (27.9%); nortriptyline 10/37 (27.0%); dizziness (n = 23), dry mouth (n = 20), constipation (n = 14), urinary retention (n = 10)). Benefits without harms occurred (amitriptyline (26/104 (25.0%); nortriptyline (4/37 (10.8%)). CONCLUSIONS: Benefits favoured amitriptyline while harms were similar for both medications.

A multi-stage process to develop quality indicators for community-based palliative care using interRAI data.

BACKGROUND: Individuals receiving palliative care (PC) are generally thought to prefer to receive care and die in their homes, yet little research has assessed the quality of home- and community-based PC. This project developed a set of valid and reliable quality indicators (QIs) that can be generated using data that are already gathered with interRAI assessments-an internationally validated set of tools commonly used in North America for home care clients. The QIs can serve as decision-support measures to assist providers and decision makers in delivering optimal care to individuals and their families. METHODS: The development efforts took part in multiple stages, between 2017-2021, including a workshop with clinicians and decision-makers working in PC, qualitative interviews with individuals receiving PC, families and decision makers and a modified Delphi panel, based on the RAND/ULCA appropriateness method. RESULTS: Based on the workshop results, and qualitative interviews, a set of 27 candidate QIs were defined. They capture issues such as caregiver burden, pain, breathlessness, falls, constipation, nausea/vomiting and loneliness. These QIs were further evaluated by clinicians/decision makers working in PC, through the modified Delphi panel, and five were removed from further consideration, resulting in 22 QIs. CONCLUSIONS: Through in-depth and multiple-stakeholder consultations we developed a set of QIs generated with data already collected with interRAI assessments. These indicators provide a feasible basis for quality benchmarking and improvement systems for care providers aiming to optimize PC to individuals and their families.

Family physicians supporting patients with palliative care needs within the patient medical home in the community: an appreciative inquiry study.

OBJECTIVES: Canadians want to live and die in their home communities. Unfortunately, Canada has the highest proportion of deaths in acute care facilities as compared with other developed nations. This study aims to identify the essential components required to best support patients and families with palliative care needs in their communities to inform system changes and empower family physicians (FPs) in providing community-based palliative care for patients. DESIGN: Appreciative inquiry (AI) methodology with individual interviews. Interview transcripts were analysed iteratively for emerging themes and used to develop 'possibility statements' to frame discussion in subsequent focus groups. A conceptual framework emerged to describe the 'destiny' state as per AI methods. SETTING: FPs, palliative home care providers, patients and bereaved caregivers were recruited in the urban and surrounding rural health authority zones of Calgary, AB, Canada. PARTICIPANTS: 9 females and 9 males FPs (range of practice years 2-42) in interviews; 8 bereaved caregivers, 1 patient, 26 palliative home care team members in focus groups. Interviews and focus groups were recorded digitally and transcribed with consent. RESULTS: The identified themes that transcended all three groups created the foundation for the conceptual framework. Enhanced communication and fostering team relationships between all care providers with the focus on the patient and caregivers was the cornerstone concept. The FP/patient relationship must be protected and encouraged by all care providers, while more system flexibility is needed to respond more effectively to patients. These concepts must exist in the context that patients and caregivers need more education regarding the benefits of palliative care, while increasing public discourse about mortality. CONCLUSIONS: Key areas were identified for how the patient's team can work together effectively to improve the patient and caregiver palliative care journey in the community with the cornerstone element of building on the trusting FP-patient longitudinal relationship.