Publications by authors named "Aynharan Sinnarajah"

27 Publications

  • Page 1 of 1

Missing in Action: Reports of Interdisciplinary Integration in Canadian Palliative Care.

Curr Oncol 2021 07 16;28(4):2699-2707. Epub 2021 Jul 16.

Tom Baker Cancer Centre, Alberta Health Services, Calgary, AB T2N 4N2, Canada.

Palliative care has an interdisciplinary tradition and Canada is a leader in its research and practice. Yet even in Canada, a full interdisciplinary complement is often lacking, with psychosocial presence ranging from 0-67.4% depending on the discipline and region. We sought to examine the most notable gaps in care from the perspective of Canadian palliative professionals. Canadian directors of palliative care programs were surveyed with respect to interdisciplinary integration. Participants responded in writing or by phone interview. We operationalized reports of interdisciplinary professions as either "present" or "under/not-represented". The Vaismoradi, Turunen, and Bondas' procedure was used for content analysis. Our 14 participants consisted of physicians (85.7%), nurses (14.3%), and a social worker (7.1%) from Ontario (35.7%), British Columbia (14.3%), Alberta (14.3%), Quebec (14.3%), Nova Scotia (14.3%), and New Brunswick (7.1%). Psychology and social work were equally and most frequently reported as "under/not represented" (5/14, each). All participants reported the presence of medical professionals (physicians and nurses) and these groups were not reported as under/not represented. Spiritual care and others (e.g., rehabilitation and volunteers) were infrequently reported as "under/not represented". Qualitative themes included Commonly Represented Disciplines, Quality of Multidisciplinary Collaboration, Commonly Under-Represented Disciplines, and Special Concern: Psychosocial Care. Similar to previous reports, we found that (1) psychology was under-represented yet highly valued and (2) despite social work's relative high presence in care, our participants reported a higher need for more. These finding highlight those psychosocial gaps in care are most frequently noted by palliative care professionals, especially psychology and social work. We speculate on barriers and enablers to addressing this need.
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http://dx.doi.org/10.3390/curroncol28040235DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8293061PMC
July 2021

Reflecting on Palliative Care Integration in Canada: A Qualitative Report.

Curr Oncol 2021 07 19;28(4):2753-2762. Epub 2021 Jul 19.

Tom Baker Cancer Centre, Alberta Health Services, Calgary, AB T2N 4N2, Canada.

Studies have identified integrated interdisciplinary care as a hallmark of effective palliative care. Although models attempt to show how integration may function, there is little literature available that practically explores how integration is fostered and maintained. In this study we asked palliative care clinicians across Canada to comment on how services are integrated across the healthcare system. This is an analysis of qualitative data from a larger study, wherein clinicians provided written responses regarding their experiences. Content analysis was used to identify response categories. Clinicians ( = 14) included physicians, a nurse and a social worker from six provinces. They identified the benefits of formalized relationships and collaboration pathways with other services to streamline referral and consultation. Clinicians perceived a need for better training of residents and primary care physicians in the community and more acceptance, shared understanding, and referrals. Clinicians also described integrating well with oncology departments. Lastly, clinicians considered integration a complex process with departmental, provincial, and national involvement. The needs and strengths identified by the clinicians mirror the qualities of successfully integrated palliative care programs globally and highlight specific areas in policy, education, practice, and research that could benefit those in Canada.
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http://dx.doi.org/10.3390/curroncol28040240DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8293234PMC
July 2021

Palliative home care and emergency department visits in the last 30 and 90 days of life: a retrospective cohort study of patients with cancer.

BMJ Support Palliat Care 2021 Jun 29. Epub 2021 Jun 29.

Department of Oncology, University of Calgary, Calgary, Alberta, Canada

Objectives: Evaluate the association of specialist palliative home care (HC) on emergency department (ED) visits in the 30 and 90 days prior to death.

Methods: This retrospective cohort study using administrative data identified 6976 adults deceased from cancer between 2008 and 2015, living ≥180 days after diagnosis of cancer, and residing in the urban Calgary Zone of Alberta Health Services. All palliative HC and generalist HC services were examined. Regression analyses examined the relationships of HC type to ED visits in the last 30 or 90 days of life.

Results: In the last 30 days of life, compared with patients receiving palliative HC, patients receiving only generalist HC, or no HC, were more likely to visit the ED (OR) 1.19; 95% CI 1.06 to 1.34; OR 1.54; 95% CI 1.31 to 1.82). In the last 90 days of life, compared with patients receiving palliative HC, those receiving generalist HC (OR 1.48; 95% CI 1.32 to 1.67) and no HC (OR 1.66; 95% CI 1.39 to 1.99) had increased odds of visiting the ED.

Conclusions: Receiving generalist HC and no HC was associated with increased odds of visiting the ED in the last 30 and 90 days of life, when compared with patients receiving palliative HC. Improving access to palliative HC for patients at high risk of visiting the ED may reduce ED visits and acute care costs and improve quality of life in the last 90 days of life.
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http://dx.doi.org/10.1136/bmjspcare-2021-002889DOI Listing
June 2021

Development and validation of a patient-reported measure of compassion in healthcare: the Sinclair Compassion Questionnaire (SCQ).

BMJ Open 2021 06 16;11(6):e045988. Epub 2021 Jun 16.

College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.

Objectives: Compassion is a key indicator of quality care that is reportedly eroding from patients' care experience. While the need to assess compassion is recognised, valid and reliable measures are lacking. This study developed and validated a clinically informed, psychometrically rigorous, patient-reported compassion measure.

Design: Data were collected from participants living with life-limiting illnesses over two study phases across four care settings (acute care, hospice, long term care (LTC) and homecare). In phase 1, data were analysed through exploratory factor analysis (EFA), with the final items analysed via confirmatory factor analysis (CFA) in phase 2. The Schwartz Center Compassionate Care Scale (SCCCS), the revised Edmonton Symptom Assessment Scale (ESAS-r) and Picker Patient Experience Questionnaire (PPEQ) were also administered in phase 2 to assess convergent and divergent validity.

Setting And Participants: 633 participants were recruited over two study phases. In the EFA phase, a 54-item version of the measure was administered to 303 participants, with 330 participants being administered the final 15-item measure in the CFA phase.

Results: Both EFA and CFA confirmed compassion as a single factor construct with factor loadings for the 15-item measure ranging from 0.76 to 0.86, with excellent test-retest reliability (intraclass correlation coefficient range: 0.74-0.89) and excellent internal reliability (Cronbach's alpha of 0.96). The measure was positively correlated with the SCCCS (r=0.75, p<0.001) and PPEQ (r=0.60, p<0.001). Participants reporting higher experiences of compassion had significantly greater well-being and lower depression on the ESAS-r. Patients in acute care and hospice reported significantly greater experiences of compassion than LTC residents.

Conclusions: There is strong initial psychometric evidence for the Sinclair Compassion Questionnaire (SCQ) as a valid and reliable patient-reported compassion measure. The SCQ provides healthcare providers, settings and administrators the means to routinely measure patients experiences of compassion, while providing researchers a robust measure to conduct high-quality research.
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http://dx.doi.org/10.1136/bmjopen-2020-045988DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8211045PMC
June 2021

Multi-disciplinary supportive end of life care in long-term care: an integrative approach to improving end of life.

BMC Geriatr 2021 05 22;21(1):326. Epub 2021 May 22.

Cumming School of Medicine, University of Calgary, Calgary, Canada.

Background: Optimal supportive end of life care for frail, older adults in long term care (LTC) homes involves symptom management, family participation, advance care plans, and organizational support. This 2-phase study aimed to combine multi-disciplinary opinions, build group consensus, and identify the top interventions needed to develop a supportive end of life care strategy for LTC.

Methods: A consensus-building approach was undertaken in 2 Phases. The first phase deployed modified Delphi questionnaires to address and transform diverse opinions into group consensus. The second phase explored and prioritized the interventions needed to develop a supportive end of life care strategy for LTC. Development of the Delphi questionnaire was based on findings from published results of physician perspectives of barriers and facilitators to optimal supportive end of life care in LTC, a literature search of palliative care models in LTC, and published results of patient, family and nursing perspectives of supportive end of life care in long term care. The second phase involved World Café Style workshop discussions. A multi-disciplinary purposive sample of individuals inclusive of physicians; staff, administrators, residents, family members, and content experts in palliative care, and researchers in geriatrics and gerontology participated in round one of the modified Delphi questionnaire. A second purposive sample derived from round one participants completed the second round of the modified Delphi questionnaire. A third purposive sample (including participants from the Delphi panel) then convened to identify the top priorities needed to develop a supportive end-of-life care strategy for LTC.

Results: 19 participants rated 75 statements on a 9-point Likert scale during the first round of the modified Delphi questionnaire. 11 participants (participation rate 58 %) completed the second round of the modified Delphi questionnaire and reached consensus on the inclusion of 71candidate statements. 35 multidisciplinary participants discussed the 71 statements remaining and prioritized the top clinical practice, communication, and policy interventions needed to develop a supportive end of life strategy for LTC.

Conclusions: Multi-disciplinary stakeholders identified and prioritized the top interventions needed to develop a 5-point supportive end of life care strategy for LTC.
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http://dx.doi.org/10.1186/s12877-021-02271-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8140573PMC
May 2021

Oncology Clinicians' Challenges to Providing Palliative Cancer Care-A Theoretical Domains Framework, Pan-Cancer System Survey.

Curr Oncol 2021 04 9;28(2):1483-1494. Epub 2021 Apr 9.

Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB T2N 4Z6, Canada.

Despite the known benefits, healthcare systems struggle to provide early, integrated palliative care (PC) for advanced cancer patients. Understanding the barriers to providing PC from the perspective of oncology clinicians is an important first step in improving care. A 33-item online survey was emailed to all oncology clinicians working with all cancer types in Alberta, Canada, from November 2017 to January 2018. Questions were informed by Michie's Theoretical Domains Framework and Behaviour Change Wheel (BCW) and queried (a) PC provision in oncology clinics, (b) specialist PC consultation referrals, and (c) working with PC consultants and home care. Respondents ( = 263) were nurses (41%), physicians (25%), and allied healthcare professionals (18%). Barriers most frequently identified were "clinicians' limited time/competing priorities" (64%), "patients' negative perceptions of PC" (63%), and clinicians' capability to manage patients' social issues (63%). These factors mapped to all three BCW domains: motivation, opportunity, and capability. In contrast, the least frequently identified barriers were clinician motivation and perceived PC benefits. Oncology clinicians' perceptions of barriers to early PC were comparable across tumour types and specialties but varied by professional role. The main challenges to early integrated PC include all three BCW domains. Notably, motivation is not a barrier for oncology clinicians; however, opportunity and capability barriers were identified. Multifaceted interventions using these findings have been developed, such as tip sheets to enhance capability, reframing PC with patients, and earlier specialist PC nursing access, to enhance clinicians' use of and patients' benefits from an early PC approach.
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http://dx.doi.org/10.3390/curroncol28020140DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8167753PMC
April 2021

Hospital-based acute care in the last 30 days of life among patients with chronic disease that received early, late or no specialist palliative care: a retrospective cohort study of eight chronic disease groups.

BMJ Open 2021 03 24;11(3):e044196. Epub 2021 Mar 24.

Division of Palliative Medicine, Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

Objective: For eight chronic diseases, evaluate the association of specialist palliative care (PC) exposure and timing with hospital-based acute care in the last 30 days of life.

Design: Retrospective cohort study using administrative data.

Setting: Alberta, Canada between 2007 and 2016.

Participants: 47 169 adults deceased from: (1) cancer, (2) heart disease, (3) dementia, (4) stroke, (5) chronic lower respiratory disease (chronic obstructive pulmonary disease (COPD)), (6) liver disease, (7) neurodegenerative disease and (8) renovascular disease.

Main Outcome Measures: The proportion of decedents who experienced high hospital-based acute care in the last 30 days of life, indicated by ≥two emergency department (ED) visit, ≥two hospital admissions,≥14 days of hospitalisation, any intensive care unit (ICU) admission, or death in hospital. Relative risk (RR) and risk difference (RD) of hospital-based acute care given early specialist PC exposure (≥90 days before death), adjusted for patient characteristics.

Results: In an analysis of all decedents, early specialist PC exposure was associated with a 32% reduction in risk of any hospital-based acute care as compared with those with no PC exposure (RR 0.69, 95% CI 0.66 to 0.71; RD 0.16, 95% CI 0.15 to 0.17). The association was strongest in cancer-specific analyses (RR 0.53, 95% CI 0.50 to 0.55; RD 0.31, 95% CI 0.29 to 0.33) and renal disease-specific analyses (RR 0.60, 95% CI 0.43 to 0.84; RD 0.22, 95% CI 0.11 to 0.34), but a~25% risk reduction was observed for each of heart disease, COPD, neurodegenerative diseases and stroke. Early specialist PC exposure was associated with reducing risk of four out of five individual indicators of high hospital-based acute care in the last 30 days of life, including ≥two ED visit,≥two hospital admission, any ICU admission and death in hospital.

Conclusions: Early specialist PC exposure reduced the risk of hospital-based acute care in the last 30 days of life for all chronic disease groups except dementia.
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http://dx.doi.org/10.1136/bmjopen-2020-044196DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7993357PMC
March 2021

Real World Implementation of the Serious Illness Care Program in Cancer Care: Results of a Quality Improvement Initiative.

J Palliat Med 2021 06 12;24(6):905-909. Epub 2021 Jan 12.

Department of Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta, Canada.

Guidelines suggest that advance care planning (ACP) and goals-of-care discussions should be conducted for patients with advanced cancer early in the course of their disease. A recent audit of our health system found that these discussions were rarely being documented in the electronic medical record (EMR). We conducted a quality improvement initiative to improve rates of documentation of goals and wishes among patients with advanced cancer. On the basis of previous analyses of this problem, we determined that provider capability and opportunity were the main barriers to conducting and documenting serious illness conversations. We implemented the serious illness care program (SICP), a systematic multicomponent intervention that has shown potential for conducting and documenting ACP discussions in two oncology clinics. Our goal was to conduct at least 24 serious illness conversations over the implementation period, with documentation of at least 95% of all conversations. The SICP was implemented in two outpatient medical oncology clinics. A total of 15 serious illness care conversations occurred and 14 (93%) of these conversations were documented in the EMR. Total rates of documentation increased between the preimplementation and implementation period (4.2%-5.4% for clinician A and 0%-7.3% for clinician B). Implementation of the SICP resulted in increased rates of documentation, but the target number of conversations was not met. Further improvement cycles are required to address barriers to conducting and documenting routine serious illness conversations.
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http://dx.doi.org/10.1089/jpm.2020.0680DOI Listing
June 2021

Patient and caregiver experiences with advanced cancer care: a qualitative study informing the development of an early palliative care pathway.

BMJ Support Palliat Care 2020 Oct 19. Epub 2020 Oct 19.

Community Health Sciences, University of Calgary, Calgary, Alberta, Canada.

Background: Palliative care is an approach that improves the quality of life of patients and families facing challenges associated with life-threatening illness. In order to effectively deliver palliative care, patient and caregiver priorities need to be incorporated in advanced cancer care.

Aim: This study identified experiences of patients living with advanced colorectal cancer and their caregivers to inform the development of an early palliative care pathway.

Design: Qualitative patient-oriented study.

Settings/participants: Patients receiving care at two cancer centres were interviewed using semistructured telephone interviews to explore their experiences with cancer care services received prior to a new developed pathway. Interviews were transcribed verbatim, and the data were thematically analysed.

Results: From our study, we identified gaps in advanced cancer care that would benefit from an early palliative approach to care. 15 patients and 7 caregivers from Edmonton and Calgary were interviewed over the phone. Participants identified the following gaps in advanced cancer care: poor communication of diagnosis, lack of communication between healthcare providers, role and involvement of the family physician, lack of understanding of palliative care and advance care planning.

Conclusions: Early palliative approaches to care should consider consistent and routine delivery of palliative care information, collaborations among different disciplines such as oncology, primary care and palliative care, and engagement of patients and family caregivers in the development of care pathways.
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http://dx.doi.org/10.1136/bmjspcare-2020-002578DOI Listing
October 2020

Barriers and facilitators to optimal supportive end-of-life palliative care in long-term care facilities: a qualitative descriptive study of community-based and specialist palliative care physicians' experiences, perceptions and perspectives.

BMJ Open 2020 08 5;10(8):e037466. Epub 2020 Aug 5.

Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

Objective: The COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities.

Design: Qualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework.

Setting: Residential long-term care.

Participants: 23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians.

Results: Motivation barriers include families' lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population.

Conclusion: Findings reveal that validating families' concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.
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http://dx.doi.org/10.1136/bmjopen-2020-037466DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7409966PMC
August 2020

Comparing the physical, psychological, social, and spiritual needs of patients with non-cancer and cancer diagnoses in a tertiary palliative care setting.

Palliat Support Care 2020 10;18(5):513-518

Division of Palliative Care, Department of Oncology, University of Calgary, Calgary, Alberta, Canada.

Objective: The purpose was to describe the physical, psychological, social, and spiritual needs of patients with non-cancer serious illness diagnoses compared to those of patients with cancer.

Method: We conducted a retrospective chart review of all patients with a non-cancer diagnosis admitted to a tertiary palliative care unit between January 2008 and December 2017 and compared their needs to those of a matched cohort of patients with cancer diagnoses. The prevalence of needs within the following four main concerns was recorded and the data analyzed using descriptive statistics and content analysis: •Physical: pain, dyspnea, fatigue, anorexia, edema, and delirium•Psychological: depression, anxiety, prognosis, and dignity•Social: caregiver burden, isolation, and financial•Spiritual: spiritual distress.

Results: The prevalence of the four main concerns was similar among patients with non-cancer and cancer diagnoses. Pain, nausea/vomiting, fatigue, and anorexia were more prevalent among patients with cancer. Dyspnea was more commonly the primary concern in patients with non-cancer diagnoses (39%), who also had a higher prevalence of anxiety and concerns about dignity. Spirituality was addressed more often in patients with cancer.

Significance Of Results: The majority of patients admitted to tertiary palliative care settings have historically been those with cancer. The tertiary palliative care needs of patients with non-cancer diagnoses have not been well described, despite the increasing prevalence of this population. Our description of the palliative care needs of patients with non-cancer diagnoses will help guide future palliative care for the increasing population of patients with non-cancer serious illness diagnoses.
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http://dx.doi.org/10.1017/S1478951519001020DOI Listing
October 2020

Staffing a Specialist Palliative Care Service, a Team-Based Approach: Expert Consensus White Paper.

J Palliat Med 2019 11 26;22(11):1318-1323. Epub 2019 Jul 26.

Department of Oncology, University of Calgary, Calgary, Alberta, Canada.

Palliative care is an evolving field with extensive studies demonstrating its benefits to patients, families, and the health care system. Many health systems have developed or are developing palliative care programs. The Canadian Society of Palliative Care Physicians (CSPCP) is often asked to recommend how many palliative care specialists are needed to implement and support an integrated palliative care program. This information would allow health service decision makers and educational institutions to plan resources accordingly to manage the needs of their communities. The CSPCP is well positioned to answer this question, as many of its members are Directors of palliative care programs and have been responsible for creating and overseeing the pioneering work of building these programs over the past few decades. In 2017, the CSPCP commissioned a working group to develop a staffing model for specialist palliative care teams based on the interdependence of three key professional roles, an extensive literature search, key stakeholder interviews, and expert opinions. This article is the Canadian Society of Palliative Care's recommended starting point that will be further evaluated as it is utilized across Canada. For more information and to see sample calculations go to the Canadian Society of Palliative Care Physicians Staffing Model for Palliative Care Programs (https://www.cspcp.ca).
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http://dx.doi.org/10.1089/jpm.2019.0314DOI Listing
November 2019

Premature deaths due to head and neck cancers in canada: A nationwide analysis from 1980 to 2010.

Laryngoscope 2020 04 25;130(4):911-917. Epub 2019 Apr 25.

Surveillance and Reporting, Cancer Control Alberta, Alberta Health Services, Calgary, Alberta, Canada.

Objectives/hypothesis: To examine if there has been a reduction in premature mortality due to head and neck cancers and their subtypes in the Canadian population between 1980 and 2010.

Study Design: Retrospective database review.

Methods: Mortality data for head and neck cancers were obtained from the World Health Organization's mortality database. Years of life lost (YLL) was calculated according to Canadian life tables. A new measure, average lifespan shortened (ALSS), was calculated as a ratio of YLL over the expected lifespan.

Results: During the period of interest, decreases in age standardized rates of death adjusted to the World Standard Population were observed mainly among men. The adjusted YLL rates remained unchanged with respect to oral cancers in women, but slightly decreased for oral cancers in men and for laryngeal cancers in both sexes. Our new measure of ALSS showed that in 1980, patients with oral cancers lost an average of 20% of their lifespan, whereas in 2010, men and women still lost approximately 20% and 18%, respectively. Patients with laryngeal cancers lost 18% of their lifespan in both sexes in 1980 and 17% in 2010. The ALSS subanalysis showed that the largest gain of lifespan was observed for cancers of the hypopharynx in men and for cancers of the floor of mouth and nasopharynx in women.

Conclusions: There appears to be modest improvements in premature mortality due to head and neck cancers in Canada over a 30-year period, with the exception of oral cancers in men. Changes in premature mortality varied slightly by cancer subtypes.

Level Of Evidence: NA Laryngoscope, 130:911-917, 2020.
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http://dx.doi.org/10.1002/lary.28024DOI Listing
April 2020

Description of Continuous Palliative Sedation Practices in a Large Health Region and Comparison with Clinical Practice Guidelines.

J Palliat Med 2019 09 2;22(9):1052-1064. Epub 2019 Apr 2.

Division of Palliative Medicine, Department of Oncology, University of Calgary, Calgary, Alberta, Canada.

Published reports of continuous palliative sedation therapy (CPST) suggest heterogeneity in practice. There is a paucity of reports that compare practice with clinical guidelines. To assess adherence of continuous palliative sedation practices with criteria set forth in local clinical guidelines, and to describe other features including prevalence, medication dosing, duration, multidisciplinary team involvement, and concurrent therapies. Retrospective chart review. We included cases in which a midazolam infusion was ordered at the end of life. Study sites included four adult hospitals in the Calgary health region, two hospices, and a tertiary palliative care unit. Descriptive data, including proportion of deaths involving palliative sedation therapy, number of criteria documented, midazolam dose/duration, concurrent symptom management therapies, and referrals to spiritual care, psychology, or social work. CPST occurred in 602 out of 14,360 deaths (4.2%). Full adherence to criteria occurred in 7% of cases. The most commonly missed criteria were: a "C2" goals-of-care designation order (comfort care focus in the imminently dying) (84%) and documentation of imminent death in the chart (55%). Concurrent medical therapies included opioids in 98% of cases and intravenous hydration in 85% of cases. Few referrals were made to multidisciplinary care teams. We found low adherence to palliative sedation guidelines. This may reflect the perception that some criteria are redundant or clinically unimportant. Future work could include a study of barriers to guideline uptake, and guideline modification to provide direction on concurrent therapies and multidisciplinary team involvement.
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http://dx.doi.org/10.1089/jpm.2018.0372DOI Listing
September 2019

Recommendations for the Care of Patients Receiving Conservative Kidney Management: Focus on Management of CKD and Symptoms.

Clin J Am Soc Nephrol 2019 04 28;14(4):626-634. Epub 2019 Feb 28.

Division of Care of the Elderly, Department of Family Medicine, University of Alberta, Edmonton, Alberta, Canada.

Conservative kidney management is increasingly accepted as an appropriate treatment option for patients with eGFR category 5 CKD who are unlikely to benefit from dialysis and/or who choose a nondialysis care option. However, there remains great variation in the delivery of their care. As part of the development of a conservative kidney management pathway that is undergoing evaluation, a set of recommendations specific to conservative kidney management for managing the complications of CKD and common symptoms was developed. These recommendations focus on the patient's values and preferences and aim to optimize comfort and quality of life. Explanations for the interventions are provided to support the shared decision-making process between health care professionals, patients, and family members. The recommendations generally emphasize the preservation of function (cognitive, physical, and kidney) and address symptom burden, acknowledging that management priorities can change over time. The recommendations should be used in conjunction with other key elements of conservative kidney management, including clear communication and shared decision making for choosing conservative kidney management, advance care planning, and psychosocial support. Although there are limitations to the existing evidence specific to conservative kidney management, these recommendations are intended as a starting point toward reaching consensus and generating further evidence.
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http://dx.doi.org/10.2215/CJN.10510917DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450361PMC
April 2019

Web-based videoconferencing for rural palliative care consultation with elderly patients at home.

Support Care Cancer 2019 Sep 7;27(9):3321-3330. Epub 2019 Jan 7.

Palliative Care Consult Service - Rural, Calgary Zone, Alberta Health Services, 11 Cimarron Common, Okotoks, Alberta, T1S 2E9, Canada.

Purpose: Providing specialized palliative care support to elderly patients in rural areas can be challenging. The purpose of this study was to gain a preliminary understanding of the experience of using mobile web-based videoconferencing (WBVC) for conducting in-home palliative care consults with elderly rural patients with life-limiting illness.

Methods: This was a descriptive, exploratory, proof-of-concept study with a convenience sample of 10 WBVC visits. A palliative care clinical nurse specialist (PC-CNS), in the home with the patient/family and home care nurse (HC-N), used a laptop computer with webcam and speakerphone to connect to a distant palliative care physician consultant (PC-MD) over a secure Internet connection. Data was collected using questionnaires, interviews, and focus groups.

Results: Analysis of qualitative data revealed four themes: communication, logistics, technical issues, and trust. Participants reported they were comfortable discussing concerns by WBVC and felt it was an acceptable and convenient way to address needs. Audiovisual quality was not ideal but was adequate for communication. Use of WBVC improved access and saved time and travel. Fears were expressed about lack of security of information transmitted over the Internet.

Conclusions: Using WBVC for in-home palliative care consults could be an acceptable, effective, feasible, and efficient way to provide timely support to elderly rural patients and their families. Having a health care provider in the home during the WBVC is beneficial. WBVC visits have advantages over telephone calls, but limitations compared to in-person visits, suggesting they be an alternative but not replacement for in-person consultations.
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http://dx.doi.org/10.1007/s00520-018-4580-8DOI Listing
September 2019

Identification and Prioritization of Quality Indicators for Conservative Kidney Management.

Am J Kidney Dis 2019 02 25;73(2):174-183. Epub 2018 Oct 25.

Department of Medicine, University of Calgary, Calgary, Alberta, Canada. Electronic address:

Rationale & Objective: Conservative kidney management is holistic patient-centered care for patients with kidney failure that focuses on delaying the progression of kidney disease and symptom management, without the provision of renal replacement therapy. Currently there is no consensus as to what constitutes high-quality conservative kidney management. We aimed to develop a set of quality indicators for the conservative management of kidney failure.

Study Design: Nominal group technique and Delphi survey process.

Setting & Participants: 16 patients and caregivers from Calgary, Canada, participated in 2 nominal group meetings. 91 multidisciplinary health care professionals from 10 countries took part in a Delphi process.

Analytical Approach: Nominal group technique study of patients and caregivers was used to identify and prioritize a list of quality indicators. A 4-round Delphi process with health care professionals was used to rate the quality indicators until consensus was reached (defined as a mean rating on the Likert scale ≥7.0 and percent agreement >75%). Quality indicators that met criteria for consensus inclusion in the Delphi survey were ranked, and comparisons were made with nominal group priorities.

Results: 99 quality indicators met consensus criteria for inclusion. The most highly rated quality indicator in the Delphi process was the "percentage of patients that die in the place they desire." There was significant discordance between priorities of the nominal groups with that of the Delphi survey, with only 1 quality indicator being shared on each groups' top 10 list of quality indicators.

Limitations: Participants were largely from high-income English-speaking countries, and most already had structured conservative kidney management programs in place, all potentially limiting generalizability.

Conclusions: Quality of conservative kidney management care is important to patients, caregivers, and health care professionals. However, discordant quality indicator priorities between groups suggested that care providers delivering conservative kidney management may not prioritize what is most important to those receiving this care. Conservative kidney management programs and health care providers can improve the applicability of this consensus-based quality indicator list to their program by further developing and evaluating it for use in their program.
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http://dx.doi.org/10.1053/j.ajkd.2018.08.014DOI Listing
February 2019

Outcomes From a Patient-Centered, Interprofessional, Palliative Consult Team in Oncology.

J Natl Compr Canc Netw 2018 06;16(6):719-726

Palliative care aims to improve suffering and quality of life for patients with life-limiting disease. This study evaluated an interdisciplinary palliative consultation team for outpatients with advanced cancer at the Tom Baker Cancer Centre. This team traditionally offered palliative medicine and recently integrated a specialized psychosocial clinician. Historic patient-reported clinical outcomes were reviewed. There were no a priori hypotheses. A total of 180 chart reviews were performed in 8 sample months in 2015 and 2016; 114 patients were included. All patients were referred for management of complex cancer symptomatology by oncology or palliative care clinicians. Patients attended initial interviews in person; palliative medicine follow-ups were largely performed by telephone, and psychosocial appointments were conducted in person for those who were interested and had psychosocial concerns. Chart review included collection of demographics, medical information, and screening for distress measures at referral, initial consult, and discharge. A total of 51% of the patient sample were men, 81% were living with a partner, and 87% had an advanced cancer diagnosis. Patients were grouped based on high, moderate, or low scores for 5 symptoms (pain, fatigue, depression, anxiety, and well-being). High scores on all 5 symptoms decreased from referral to discharge. Pain and anxiety decreased in the moderate group. All 5 low scores increased significantly. Sleep, frustration/anger, sense of burdening others, and sensitivity to cold were less frequently endorsed by discharge. Patients who completed this interdisciplinary palliative consult service appeared to experience a reduction in their most severe symptoms. Visits to patients during existing appointments or having them attend a half-day clinic appears to have reached those referred. With interdisciplinary integration, clinicians are able to collaborate to address patient care needs. Considerations include how to further integrate palliative and psychosocial care to achieve additional benefits and ongoing monitoring of changes in symptom burden.
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http://dx.doi.org/10.6004/jnccn.2018.7014DOI Listing
June 2018

Healthcare providers' perspectives on perceived barriers and facilitators of compassion: Results from a grounded theory study.

J Clin Nurs 2018 May;27(9-10):2083-2097

Faculty of Nursing, University of Calgary, Calgary, AB, Canada.

Aims And Objectives: To explore healthcare provider perspectives and experiences of perceived barriers and facilitators of compassion.

Background: Compassion is considered a component of quality health care that healthcare providers are increasingly expected to provide. While there have been some studies exploring facets of healthcare providers' perspectives on the barriers and facilitators to providing compassion, a comprehensive understanding based on direct reports from healthcare providers is lacking.

Design: Data were collected via focus groups and semi-structured interviews. Data was analyzed in accordance with Straussian grounded theory.

Methods: Semistructured focus groups with frontline healthcare providers and individual interviews with peer-nominated exemplary compassionate care providers were audio-recorded, professionally transcribed and analysed. Fifty-seven participants were recruited from three healthcare settings within both rural and urban settings in Alberta, Canada, using convenience, snowball and theoretical sampling.

Results: Qualitative analysis of the data generated two categories and associated themes and subthemes delineating perceived barriers and facilitators to compassion. The first category, challenges to compassion, reflects participants' discomfort associating the notion of barriers to compassion and contained several themes participants conceptualised as challenges: personal challenges, relational challenges, systemic challenges and maladaptive responses. The second category, facilitators of compassion, included the themes of personal facilitators, relational facilitators, systemic facilitators and adaptive responses of intentional action.

Conclusion: Although participants described certain factors such as system and time constraints along with interaction styles of patients and families that can challenge healthcare provider compassion, these challenges were not considered insurmountable. While acknowledging these as challenges, participants identified healthcare providers themselves, including their responses towards the identified challenges of compassion, as significant factors in this process-a novel finding from this study. This study provides insight into healthcare providers' perspectives on the notion of barriers and facilitators in the provision of compassion.

Relevance To Clinical Practice: This study provides a blueprint for optimising compassion on a personal, relational and system level.
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http://dx.doi.org/10.1111/jocn.14357DOI Listing
May 2018

What are healthcare providers' understandings and experiences of compassion? The healthcare compassion model: a grounded theory study of healthcare providers in Canada.

BMJ Open 2018 03 14;8(3):e019701. Epub 2018 Mar 14.

Research Institute in Oncology and Hematology, CancerCare Manitoba, Winnipeg, Manitoba, Canada.

Background: Healthcare providers are considered the primary conduit of compassion in healthcare. Although most healthcare providers desire to provide compassion, and patients and families expect to receive it, an evidence-based understanding of the construct and its associated dimensions from the perspective of healthcare providers is needed.

Objectives: The aim of this study was to investigate healthcare providers' perspectives and experiences of compassion in order to generate an empirically derived, clinically informed model.

Design: Data were collected via focus groups with frontline healthcare providers and interviews with peer-nominated exemplary compassionate healthcare providers. Data were independently and collectively analysed by the research team in accordance with Straussian grounded theory.

Setting And Participants: 57 healthcare providers were recruited from urban and rural palliative care services spanning hospice, home care, hospital-based consult teams, and a dedicated inpatient unit within Alberta, Canada.

Results: Five categories and 13 associated themes were identified, illustrated in the Healthcare Provider Compassion Model depicting the dimensions of compassion and their relationship to one another. Compassion was conceptualised as-a virtuous and intentional response to know a person, to discern their needs and ameliorate their suffering through relational understanding and action.

Conclusions: An empirical foundation of healthcare providers' perspectives on providing compassionate care was generated. While the dimensions of the Healthcare Provider Compassion Model were congruent with the previously developed Patient Model, further insight into compassion is now evident. The Healthcare Provider Compassion Model provides a model to guide clinical practice and research focused on developing interventions, measures and resources to improve it.
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http://dx.doi.org/10.1136/bmjopen-2017-019701DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5857658PMC
March 2018

Pharmacovigilance in Hospice/Palliative Care: Net Effect of Haloperidol for Nausea or Vomiting.

J Palliat Med 2018 01 3;21(1):37-43. Epub 2017 Aug 3.

5 Wolfson Palliative Care Research Centre, Hull York Medical School , University of Hull, Hull, England.

Background: Haloperidol is widely prescribed as an antiemetic in patients receiving palliative care, but there is limited evidence to support and refine its use.

Objective: To explore the immediate and short-term net clinical effects of haloperidol when treating nausea and/or vomiting in palliative care patients.

Design: A prospective, multicenter, consecutive case series.

Setting/subjects: Twenty-two sites, five countries: consultative, ambulatory, and inpatient services.

Measurements: When haloperidol was started in routine care as an antiemetic, data were collected at three time points: baseline; 48 hours (benefits); day seven (harms). Clinical effects were assessed using the National Cancer Institute's Common Terminology Criteria for Adverse Events (NCI CTCAE).

Results: Data were collected (May 2014-March 2016) from 150 patients: 61% male; 86% with cancer; mean age 72 (standard deviation 11) years and median Australian-modified Karnofsky Performance Scale 50 (range 10-90). At baseline, nausea was moderate (88; 62%) or severe (11; 8%); 145 patients reported vomiting, with a baseline NCI CTCAE vomiting score of 1.0. The median (range) dose of haloperidol was 1.5 mg/24 hours (0.5-5 mg/24 hours) given orally or parenterally. Five patients (3%) died before further data collection. At 48 hours, 114 patients (79%) had complete resolution of their nausea and vomiting, with greater benefit seen in the resolution of nausea than vomiting. At day seven, 37 (26%) patients had a total of 62 mild/moderate harms including constipation 25 (40%); dry mouth 13 (21%); and somnolence 12 (19%).

Conclusions: Haloperidol as an antiemetic provided rapid net clinical benefit with low-grade, short-term harms.
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http://dx.doi.org/10.1089/jpm.2017.0159DOI Listing
January 2018

Paraneoplastic neuropsychiatric syndrome presenting as delirium.

BMJ Support Palliat Care 2017 Jun 28;7(2):218-220. Epub 2016 Jul 28.

Division of Medical Oncology, Department of Oncology, Faculty of Medicine, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta, Canada.

Delirium in patients with cancer is associated with poor outcomes, but reversible causes need to be ruled out. We report the case of a 59-year-old woman who was presented with behavioural and cognitive changes over 2 weeks. She was non-verbal and combative, requiring involuntary admission and declaration of incompetence to make healthcare treatment decisions. Infectious and metabolic investigations and initial brain imaging were unremarkable. She was diagnosed with limited-stage small cell lung cancer and a paraneoplastic neuropsychiatric syndrome. Owing to the patient's delirium, chemotherapy delivery required pharmacological and physical restraints. After 2 cycles of chemotherapy, she could participate in the decision process and was discharged home. She completed radical chemo-radiotherapy and has remained free of disease progression for 18 months. Paraneoplastic neuropsychiatric syndromes, although rare, are potentially treatable and need to be excluded as a cause of delirium.
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http://dx.doi.org/10.1136/bmjspcare-2015-001043DOI Listing
June 2017

Breathlessness in Elderly Adults During the Last Year of Life Sufficient to Restrict Activity: Prevalence, Pattern, and Associated Factors.

J Am Geriatr Soc 2016 Jan;64(1):73-80

Discipline of Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia.

Objectives: To investigate relationships between age, clinical characteristics, and breathlessness sufficient to have people spend at least half a day a month in bed or to cut down on their usual activities (restricting breathlessness) during the last year of life.

Design: Secondary data analysis.

Setting: General community.

Participants: Nondisabled persons aged 70 and older (N=754).

Measurements: Monthly telephone interviews were conducted to determine the occurrence of restricting breathlessness. The primary outcome was percentage of months with restricting breathlessness reported during the last year of life.

Results: Data regarding breathlessness were available for 548 of 589 (93.0%) participants who died (mean age 86.7, range 71-106; 38.8% male) between enrollment (March 1998 to October 1999) and June 2013; 311 of these (56.8%) reported restricting breathlessness at some point during the last year of life, but none reported it every month. Frequency increased in the months closer to death, irrespective of cause. Restricting breathlessness was associated with anxiety (0.25 percentage points greater in months with breathlessness per percentage point months reported anxiety, 95% confidence interval (CI)=0.16-0.34, P<.001), depression (0.14, 95% CI=0.05-0.24, P=.003), and mobility problems (0.07, 0.03-0.1, P<.001). Percentage months of restricting breathlessness was greater if chronic lung disease was noted at the most-recent comprehensive assessment (6.62 percentage points, 95% CI=4.31-8.94, P<.001), heart failure (3.34 percentage points, 95% CI=0.71-5.97, P=.01), and ex-smoker status (3.01 percentage points, 95% CI=0.94-5.07, P=.004) but decreased with older age (-0.19 percentage points, 95% CI=-0.37 to -0.02, P=.03).

Conclusion: Restricting breathlessness increased in this elderly population in the months preceding death from any cause. Breathlessness should be assessed and managed in the context of poor prognosis.
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http://dx.doi.org/10.1111/jgs.13865DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4719155PMC
January 2016

Variations in intensity of end-of-life cancer therapy by cancer type at a Canadian tertiary cancer centre between 2003 and 2010.

Support Care Cancer 2015 Oct 7;23(10):3059-67. Epub 2015 Mar 7.

Department of Oncology, Division of Radiation Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, AB, Canada.

Background: Aggressive medical management of cancer patients at the end of life (EOL) is an indicator of health services quality. We evaluated the variations in EOL cancer therapy utilization and in acute care hospital deaths across different types of cancer within the setting of a regionalized cancer program.

Methods: Intravenous chemotherapy and radiotherapy use within the last 14 and 30 days of life was identified through the Alberta Cancer Registry and then verified by chart review for cancer decedents residing within 50 km of the Tom Baker Cancer Centre between 2003 and 2010. Multivariable logistic regression was used to examine variations in outcomes of interest by cancer, adjusting for age and other factors in prespecified models.

Results: Of the 9863 decedents included in the study, 3.0 and 6.3 % received chemotherapy within the final 14 and 30 days of life, respectively. In multivariable model, breast, hematological, and gynecological cancers were at least 2.5 times more likely than other cancers to undergo EOL chemotherapy. Radiotherapy was given to 4.6 % of decedents within 14 days of death, but only 66 % (359/542 courses) were completed as prescribed. Acute care admission within 14 days of death was seen in 44 % of decedents and 34 % died in the hospital.

Conclusions: In our regional cancer program, the intensity of cancer therapies near the end of life varied considerably across different cancer types. Such variations may be unwarranted. A substantial proportion of cancer deaths occurred in the acute care setting. Greater efforts to integrate palliative care in outpatient cancer services are needed.
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http://dx.doi.org/10.1007/s00520-015-2676-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4552769PMC
October 2015

Managing brain metastases patients with and without radiotherapy: initial lessonsfrom a team-based consult service through a multidisciplinary integrated palliative oncology clinic.

Support Care Cancer 2013 Dec 10;21(12):3379-86. Epub 2013 Aug 10.

Department of Nursing, Tom Baker Cancer Centre, Alberta Health Services Cancer Care, Calgary, Canada.

Purpose: A new ambulatory consultative clinic with integrated assessments by palliative care, radiation oncology, and allied health professionals was introduced to (1) assess patients with brain metastases at a regional comprehensive cancer center and (2) inform and guide patients on management strategies, including palliative radiotherapy, symptom control, and end-of-life care issues. We conducted a quality assurance study to inform clinical program development.

Methods: Between January 2011 and May 2012, 100 consecutive brain metastases patients referred and assessed through a multidisciplinary clinic were evaluated for baseline characteristics, radiotherapy use, and supportive care decisions. Overall survival was examined by known prognostic groups. Proportion of patients receiving end-of-life radiotherapy (death within 30 and 14 days of brain radiotherapy) was used as a quality metric.

Results: The median age was 65 years, with non-small cell lung cancer (n = 38) and breast cancer (n = 23) being the most common primary cancers. At least 57 patients were engaged in advance care planning discussions at first consult visit. In total, 75 patients eventually underwent brain radiotherapy, whereas 25 did not. The most common reasons for nonradiotherapy management were patient preference and rapid clinical deterioration. Overall survival for prognostic subgroups was consistent with literature reports. End-of-life brain radiotherapy was observed in 9 % (death within 30 days) and 1 % (within 14 days) of treated patients.

Conclusions: By integrating palliative care expertise to address the complex needs of patients with newly diagnosed brain metastases, end-of-life radiotherapy use appears acceptable and improved over historical rates at our institution. An appreciable proportion of patients are not suitable for palliative brain radiotherapy or opt against this treatment option, but the team approach involving nurses, palliative care experts, allied health, and clinical oncologists facilitates patient-centered decision making and transition to end-of-life care.
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http://dx.doi.org/10.1007/s00520-013-1917-1DOI Listing
December 2013

Optimizing standard patient management through order sets - impact on care (blood cultures).

Stud Health Technol Inform 2009 ;143:487-95

Calgary Health Region, Calgary, AB, Canada.

We show that order set design and support must be thoughtful to result in improved quality of care and reduced waste and that order set use should be monitored to confirm expected impact and detect unanticipated consequences.
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June 2009

Physician adoption of an information system in an integrated health region.

AMIA Annu Symp Proc 2007 Oct 11:1096. Epub 2007 Oct 11.

Calgary Health Region, Calgary, Alberta, Canada.

We describe the strategies used to engage organizational and physician leadership through design, preparation, and support to achieve an inpatient Computerized Physician Order Entry (CPOE) rate over 70% by 1,700 physicians.
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October 2007
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