ONgoing projects

  • Principal Investigators: Sarina Isenberg, Ed Fitzgibbon, and Jill Rice

    In palliative care, a common transition is from hospital to home, but barriers limit this process; family caregivers struggle to coordinate care, communication among the care team is poor, and patients are often readmitted to hospital. While different methods exist to improve communication and coordination, no interventions for the hospital-to-home transition in palliative care have been developed in partnership with patients and caregivers, nor have any been tested in Canada. Accordingly, interventions may not capture the components needed to improve outcomes that most matter to patients. This project aims to engage patients receiving palliative care, their caregivers, and healthcare providers to design an intervention for the hospital-to-home transition at two sites: The Ottawa Hospital and Bruyère Continuing Care. Using innovative co-design workshops—a participatory approach in which all stakeholders are treated as equal collaborators in the design process to ensure the result meets their needs and is usable—we aim to create an intervention that is informed by patients, caregivers, and healthcare providers while also tailoring it to the unique needs of the Canadian hospital-to-home setting. Co-design workshop outputs will be developed into 4-6 low-fidelity prototypes of interventions. Prototypes will be tested with stakeholders to identify logistical needs and respond to design constraints. 2-3 prototypes will be developed into high-fidelity prototypes. Participants will validate or reject intervention elements based on how the prototypes meet their needs and improve their care experience. Following the co-design process, we will run a convergent parallel mixed methods implementation study to test acceptability, appropriateness, feasibility, costs and fidelity using the most successful prototype concept.

    This work is supported by The Ottawa Hospital Academic Medical Organization (TOHAMO) Innovation Fund, the Canadian Institutes of Health Research (CIHR) Transitions in Care-Phase 2 Team Grant, and the Canadian Frailty Network (CFN) Springboard Grants Program.

  • Principal Investigators: Sarina Isenberg, Grace Warmels, Adrianna Bruni, Leila Cohen

    Organ failure encompasses multiple life-limiting diseases that impact a growing proportion of the population at end of life, and are associated with a significant symptom burden that contributes to decreased quality of life. The importance of early specialist palliative care for patients with cancer is well-recognized. However, research demonstrates that palliative care is much less accessible for patients with non-cancer illnesses, such as end-stage kidney disease and end-stage liver disease. The optimal way to provide specialist palliative care to patients with these non-cancer illnesses is not known. Further research, including evaluations of current clinics, is required to model provision of outpatient palliative care for patients with end-stage kidney disease or end-stage liver disease and their families. The aim of this study is to explore the model of care provided by two novel consultative palliative care collaboration clinics for patients with end-stage kidney disease on dialysis and patients with end-stage liver disease through performance of a process evaluation. We will describe the outpatient programs via chart review and qualitative interviews. Our chart review will identify patient demographics, processes of care, and outcomes. Our qualitative interviews will explore healthcare provider, patient, and family caregiver perspectives related to their expectations and experiences within the clinics, and garner suggestions regarding how this model can evolve to best meet care needs. This study will inform the ongoing design and delivery of early outpatient palliative care for patients within each clinic and guide the future development of palliative clinics for other sub-types of organ failure.

    This work is supported by the University of Ottawa Department of Medicine Pilot Research Grant and The Ottawa Hospital Academic Medical Organization Innovation Fund.

  • Principal Investigators: Sarina Isenberg, James Downar, Peter Tanuseputro, Jason McVicar

    During the COVID-19 pandemic, many jurisdictions globally experienced surges in demand for critical care that strained or overwhelmed their healthcare systems’ ability to respond. In Canada, some jurisdictions developed critical care triage frameworks (i.e., ‘protocols’) in preparation for this eventuality, but these protocols have not yet been used. Overt triage has (so far) been averted by a combination of effective public health measures, vaccine prioritization, reducing scheduled care, and by increasing capacity through reallocation of existing staff, supplies and bed space to provide the required ICU care, or moving patients to other hospitals where ICU capacity still existed. This study aims to better understand the unintended consequences of these health measures. To do so, we will conduct two rounds of focus groups with core nation-wide stakeholders to interpret, synthesize, and supplement quantitative findings describing the effects of triage-avoidant strategies on the health outcomes of Canadians. Focus group discussions will formulate rich conversations to contextualize the quantitative findings with lived experiences, and will help formulate and test the development of a jurisdiction-level resource allocation framework that could help decision-makers improve outcomes and mitigate the potentially disproportionate effects of future pandemics on marginalized populations.

    This work is supported by the Canadian Institutes of Health Research Operating Grant-Addressing the Wider Health Impacts of COVID-19.

  • Principal Investigators: Sarina Isenberg and Amy Hsu

    Across Canada, there is an increasing emphasis on the provision of palliative and end of life care in home and community settings. Home care at the end of life can reduce hospital visits in the last two weeks of life, reduce the chances of in-hospital death, and improve patient satisfaction and provision of goal-concordant care. Physicians and nurse practitioners are often the first point of contact for palliative care initiation. However, many Canadians do not receive adequate physician and nurse practitioner home visits near the end of life. We need to be better understand provider-and policy-level factors that may be preventing or facilitating palliative care and primary care providers’ willingness to support palliative care in patients’ homes. To do so, we are conducting a mixed-methods sequential explanatory study to explore ways to build equitable system capacity for home visits for patients near the end of life in Ontario. We are using ICES population-level data to explore the association between policies based on payment incentives and home visit volumes. After estimating the incremental cost of providing home visits to achieve a unit increase in the desired policy and population-level outcomes, we will use thematic analysis to analyze qualitative interviews with physicians and nurse practitioners who do and do not provide home visits. This study will bring awareness to ways to build system capacity for home visits for people near the end of life, provide a business case for the Ontario government outlining a trajectory for how to scale up home visits at the end of life, and will increase palliative care in peoples’ homes.

    This work is supported by the Canadian Institutes of Health Research Project Grant.

  • Principal Investigators: Sarina Isenberg and Michelle Howard

    Canadians are living longer and they often experience one of more illnesses for a period of time near the end of life, which can require increases in use of health care and the need to see numerous physicians. When a person sees the same physicians over time, this is called “continuity of care”. Continuity of care is desirable, and improves outcomes such as preventive care and hospitalizations. Previous research found that during the last year of life, patients in Ontario received care in outpatient settings from an average of six different physicians representing four different specialties. The aim of this study into explore the patterns of continuity of care during the last years of life. During the first phase of the project, we are conducting a population-based retrospective cohort study using health administrative databases in Ontario. Following, phase two will be a design installation that services as a public consultation through participatory art. We will then conduct a qualitative study with patients and family caregivers to help develop a theory of whether and how patterns of continuity of care enhance outcomes important to patients and the healthcare system, while raising awareness about the role that continuity of care serves in the end-of-life period. A second design installation will incorporate findings from the quantitative and qualitative phases of this project.

    This work is supported by the Canadian Institutes of Health Research Project Grant.

  • Principal Investigators: Sarina Isenberg and Caroline McGuinty

    Heart failure is a chronic, progressive and highly symptomatic disease. There are over 600,000 Canadians living with the disease and 50,000 new cases diagnosed each year. It remains the most common reason for hospital admissions in patients over 65 years of age. Palliative care is an approach that improves the quality of life of patients with life-threatening illness and their caregivers and is well suited for patients with heart failure. Despite the demonstrated benefits of palliative care in cancer, there is limited evidence for palliative care in heart failure, and even more limited evidence on outpatient palliative care for heart failure. With this in mind, there is a need for a model of outpatient palliative care for patients with advanced heart failure and their families. Our study aims to describe a novel palliative care outpatient clinic for patients with advanced heart failure. To do so, we will conduct a retrospective chart review of individuals rostered in the cardiac palliative program to describe demographic characteristics, care processes, and outcomes. Using semi-structured interviews, we will identify key themes in the integration of palliative care for patients with heart failure from the perspectives of patients and caregivers. This study will inform the ongoing design and delivery of palliative care for patients with health failure and can be applied to other diseases such as advanced lung and kidney disease.

    This work is supported by the Pan-Canadian Palliative Care Research Collaborative (PCPCRC) Seed Funding Competition.

  • Principal Investigators: Sarina Isenberg and Jill Rice

    Care transitions at the end of life are documented as being one of the most vulnerable points along the care continuum. Of the few existing interventions focused on the subacute-to-home transition, none have not been developed in partnership with patients and caregivers, nor have they been tested in Canada. This project seeks to collect an in-depth understanding of subacute-to-home transitions at the end of life from the lived experiences of patients, caregivers, and healthcare providers. We first conducted a comprehensive literature review on subacute-to-home transitions near the end of life .Semi-structured focus groups are currently being conducted with physicians, nurses and care coordinators, administrators, and patients and caregivers. Focus groups results will inform co-design workshops with patients, caregivers, and healthcare providers. This co-design work will then move through low- and high-fidelity prototyping to develop and test an intervention that will be implemented across Bruyère Continuing Care

    This work is supported by the Bruyere Academic Medical Organization (BAMO) Incentive Award.

  • Principal Investigators: Kieran Quinn and Sarina Isenberg

    Heart failure is a chronic, incurable condition that occurs when the heart cannot sufficiently pump enough blood to meet the body’s demands. In Canada, there are currently 750,000 people suffering from heart failure. Patients with heart failure often experience depression, anxiety, frequent hospitalization, and a decreased quality of life. The initiation of palliative care may improve health outcomes for people with heart failure. Previous work has shown that people with heart failure have multidimensional, heterogenous, and evolving palliative care needs across physical, psychological, social, spiritual, and informational domains. Further research is needed to explore the palliative needs of Canadians and Ontarians with heart failure to accurately reflect unique social, demographic, and health system factors.

    This project seeks to understand the palliative care needs of patients with heart failure receiving home-based palliative care, and how their needs change over the time as their disease progresses. These insights will also inform the future creation and advancement of novel palliative care interventions tailored to the specific needs of people with heart failure. To do so, we are conducting a retrospective cohort study of individuals who died, and will be doing so using the consult notes from patient charts extracted from the Temmy Latner Centre for Palliative Care’s electronic medical records. Palliative care consult notes will be assessed to identify patient needs, as well as gaps in care. The primary needs assessed in the consult notes will include the assessment of physical symptoms; assessment of psychological, psychiatric, and cognitive aspects of care; spiritual, religious, and existential concerns; medical decision making and care planning; care transition and coordination of care; and cultural aspects of care and other factors.

    This study will help understand the palliative needs of people with heart failure, and to ensure that the right care is delivered to the right person, in the right place, at the right time.

    This work is supported by the Canadian Institutes of Health Research Project Grant

  • Principal Investigators: Sarina Isenberg and Jenny Lau

    Given the rising prevalence of opioid use disorder, there is an urgent need to understand the end-of-life needs of and to provide palliative care to people with opioid use disorder. Not only are people with opioid use disorder dying from overdoses, but they also face an increased risk of life-limiting conditions. Due to stigma, people with opioid use disorder likely face difficulty accessing palliative care and opioids, which are essential medicines to relieve pain and shortness of breath at the end of life. This aim of this project is to explore the current state of palliative care, opioid-prescribing and end-of-life outcomes for people with opioid use disorder in Ontario. To do so, we are conducting a mixed-methods project with two phases. In phase one, we are using administrative data to compare people with and without opioid use disorder—specifically identifying differences in palliative care provision, opioid prescribing, and end-of-life outcomes. During phase two, we will interview people with opioid use disorder, their caregivers, and palliative care physicians and nurses. We will use narrative analysis to understand the end-of-life experiences of people with opioid use disorder, including how stigma influences their access and experiences surrounding palliative care. Findings will be combined to fully understand the end-of-life experiences of people with opioid use disorder. This project aims to inform research and generate awareness about people with opioid use disorder at the end of their lives.

    This work is supported by Health Canada; Health Care Policy and Strategies Program Contribution and the Canadian Institutes of Health Research Project Grant.

  • Principal Investigators: Sarina Isenberg and Kaitlyn Boese

    In the past, storytelling exercises have been used for patients, family caregivers, and health care providers in palliative care units to reflect on and share lived experiences as well as explore difficult emotions. Storytelling exercises have reportedly assisted in processing challenging feelings and in the validation of their feelings of suffering for their family members and themselves. Healthcare providers have benefited from storytelling initiatives for self-care by processing challenging feelings. Currently, there is limited research exploring the feasibility of ongoing storytelling programs in the palliative care unit and the best practices for using these initiatives. The objective of this study is to use a multi-method approach to test the proof of concept, feasibility, and acceptability of a storytelling initiative in the palliative care unit at Bruyère Continuing Care. To do so, we are working with a professional storyteller to support participants (patients, family caregivers, and health care providers) in creating a 55-word story or poem to articulate the essence of their story. Participants will also complete a brief online pre/post survey focusing on perceived usefulness and each of participation. Using a semi-structured interview guide, the professional storyteller will complete an exit interview with Dr. Isenberg. Storytelling invites individuals to share what matters to them and by prioritizing this as an institution, it can contribute to a culture of acceptance and support. By affirming that the arts have a place in compassionate health care, we are demonstrating an ongoing commitment to innovative approaches to supporting patients, family caregivers, and healthcare providers. We believe that this project can help foster a positive culture on the palliative care unit.

    This work is supported by Bruyère Academic Medical Organization Incentive Funding.

  • Hafid A, Howard M, Webber C, Gayowsky A, Scott M, Jones A, Hsu AT, Tanuseputro P, Downar J, Manuel D, Isenberg SR. Describing settings of care in the last 100 days of life for cancer decedents: a population-based descriptive study. Cancer Medicine. 2022; 12(4): 4809-4820. View article

    Studies have shown that the majority of people prefer to receive care at home near the end of life. Few studies have described the settings that those with cancer spend time in during the end-of-life, and none consider homecare specifically. This study aimed to explore the different settings of care experienced in the last 100 days of life for individuals who are diagnosed with cancer, and how their care settings change as they approach death. To do so, we conducted a retrospective cohort study with descendants of those whose cause of death was cancer using health administrative data. We found that during their last 100 days, cancer descendants spent most of their time in either institutions or were at home and did not receive any care. Findings of this study demonstrate that improving homecare services during the end-of-life period may provide people dying of cancer with a more preferred dying experience.

    Howard M, Hafid A, Webber C, Isenberg SR, Gayowsky A, Jones A, Scott M, Hsu AT, Conen K, Downar J, Manuel D, Tanuseputro P. Continuity of physician care over the last year of life in different end-of-life trajectories: A retrospective population-based study. CMAJ Open. 2022; 10(4): E971-E980. View Article

    Care provided by providers such as family physicians, specialists, and palliative care physicians can vary by the illness. This variability may cause disruptions of continuity of care for patients near the end of life. This study aimed to measure continuity of outpatient physician care in the last year of life for individuals with a variety of causes of death. We also aimed to assess factors that are associated with higher rates of continuity. To do so, we conducted a retrospective descriptive study of adults who died in Ontario between 2013-2018 using provincial health administrative data. We found that the continuity of physician care in the last year of life was low, especially for those with cancer. Factors that are associated with lower rates of continuity included higher numbers of comorbidities, higher neighborhood income quintile, and non-sudden death.

    Howard M, Hafid A, Isenberg SR, Hsu AT, Scott M, Conen K, Webber C, Bronskill S, Downar J, Tanuseputro P. Intensity of outpatient physician care in the last year of life: a population-based descriptive study. CMAJ Open. 2021; 9(2): 613–22. View article

    For many patients, healthcare needs increase toward the end of life. However, little is known about the extent of outpatient physician care during that time. This study aimed to describe the amount and mix of outpatient physician care over the last 12 months of life for patients dying with different end-of-life trajectories. To do so, we conducted a retrospective descriptive study of adults who died in Ontario between 2013-2017 using provincial health administrative databases. We examined individuals with terminal illness, organ failure, frailty, sudden death and ‘other’ causes of death. We also examined the number of physician encounters, physician specialties, and number of unique physicians involved per patient. We found that the average number of outpatient physician visits over the last year of life was 16.8. These visits involved an average of 3.9 unique specialties, and 5.9 unique physicians.

    Morey T, Scott M, Saunders S, Varenbut J, Howard M, Tanuseputro P, Webber C, Killackey T, Wentlandt K, Zimmermann C, Bernstein M, Ernecoff N, Hsu A, Isenberg SR. Transitioning from hospital to palliative care at home: Patient and caregiver perceptions of continuity of care. Journal of Pain and Symptom Management. 2020; 62(2): 233-241:S0885-3924(20)30970-2. View article

    Continuity of care is important to improve the patient experience and reduce unnecessary hospitalizations when transitioning across care settings, especially at the end of life. This study aimed to explore patient and caregiver understanding and valuation of “continuity of care” when transitioning from in-hospital to a home-based palliative care team. To do so, we conducted semi-structured interviews with patients and caregivers before and after transitioning from hospital to home, and analyzed the interviews using thematic analysis. Participants perceived continuity of care in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced as the consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as the consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers.

  • Saunders S, Killackey T, Kurahashi A, Walsh C, Wendlandt K, Lovrics E, Scott M, Mahtani R, Bernstein M, Howard M, Tanuseputro P, Goldman R, Zimmermann C, Isenberg SR. Patient and caregiver experiences of transitioning from acute care to home-based care, in the context of palliative care: a systematic review. Journal of Pain and Symptom Management. 2019; 58(4): 721-734. View article

    Although the literature on transitions from hospital to the community is extensive, little is known about this experience within the context of palliative care. To explore this further, we conducted a systematic review to investigate the impact of receiving palliative care in hospital on the transition from hospital to the community. Using databases such as MEDLINE, Embase, ProQuest, CINAHL, we identified 1514 studies, 8 of which met inclusion criteria. We found that specialist palliative care interventions were delivered by multidisciplinary care teams as part of inpatient palliative care triggers, discharge planning programs, and transitional care programs. Common outcomes reported with significant findings consisted of length of stay, discharge support, and hospital readmission for those who received inpatient palliative care. This systematic review identifies that further research should use standardized outcomes with randomized controlled trials and/or propensity matched cohort designs.

    Killackey T, Lovrics E, Saunders S, Isenberg SR. Palliative care transitions from acute care to community-based care: A qualitative systematic review of the experiences and perspectives of health care providers. Palliative Medicine. 2020; 34(10): 1316-1331. View article

    Transitioning from the hospital to community is a vulnerable point in patients’ care trajectory, yet little is known about this experience within the context of palliative care. To explore this further, we conducted a systematic review to understand the experience and perspective of healthcare providers who support the transition of patients receiving palliative care as they move from acute care to community settings. Using databases such as MEDLINE, Embase, ProQuest, and CINAHL, we identified 1791 studies, 15 of which met inclusion criteria. We found that three core themes related to the role and experience of healthcare providers: assessing and preparing for the transition, organizing and facilitating the logistics of the transition, and coordinating and collaborating transitional care across sections. We found that healthcare providers experience multiple complex roles during the transition facilitation process, and future research should examine how to better assist clinicians in supporting these transitions within the context of palliative care provision.

    Saunders S, Wilkes K, Oikonen K, Abrams J, Lovrics E, Stern MA, Cheung M, Wentlandt K, Isenberg SR. The development and realization of a research-through-design knowledge translation approach in a palliative care context. Design for Health. 2021; 5(1): 39-60. View article

    Due to poor access, health research rarely engages with stakeholders outside of academic settings. As a result, it -is important to find strategic and creative ways to engage the public. To address this, we completed a research-through-design knowledge translation approach to share our research about transitioning home at end of life and generate reciprocal insights from a broader community. Working alongside an innovation design team, our research, clinical, and patient team developed and presented a design installation sharing a sense of medicalization of home at the end of life at the Toronto-based DesignTO festival. We incorporated research and patients’ experiences while encouraging attendees to share wishes and/or worries about transitioning from hospital to home at end-of-life. Fifteen hundred visitors attended our section of the event and 100 attendees interacted with our installation. We interpreted this process as a research-to-public feedback loop, whereby attendees had the opportunity to learn about EOL research and contribute to it with tangible outcomes that can support future research. Overall, making use of research-through-design resulted in a research-to-public feedback approach that can be used in various contexts outside EOL.

    Saunders S, Weiss ME, Meaney C, Killackey T, Varenbut J, Lovrics E, Ernecoff N, Hsu AT, Stern M, Mahtani R, Wentlandt K, Isenberg SR. Examining the course of transitions from hospital to home-based palliative care: a mixed methods study. Palliative Medicine. 2021; 35(8): 1590-1601. View article

    People undergoing hospital-to-home transitions in palliative care often experience challenges. To evaluate these transitions, researchers have used patient-reported outcome measures and qualitative data. The aim of this study was to gain insight into how patients experience three domains: discharge readiness, transition quality, and discharge-coping during hospital-to-home transitions. To do so, we conducted a longitudinal, convergent parallel mixed-methods study. We collected data twice: in-hospital before- and 3-4 weeks after- discharge. Patients were asked to complete scales that assessed discharge readiness, transition quality, and post-discharge coping. Qualitative interviews were also conducted at both sites. We found that patients experienced low discharge readiness, moderate transition quality, and poor discharge coping. Positive transitions involved feeling well supported, managing medications, feeling well, and having healthcare needs met. Challenges in transitions were feeling unwell, confusion over medications, unclear healthcare responsibilities, and emotional distress. Results demonstrate that these three domains can be targeted to improve transitions through intervention development.

    Isenberg SR, Killackey, T, Saunders S, Scott M, Ernecoff N, Bush ST, Varenbut J, Lovrics E, Stern MA, Hsu AT, Bernstein M, Zimmermann C, Wentlandt K, Mahtani R. “Going home [is] just a feel-good idea with no structure”: A qualitative exploration of patient and family caregiver expectations and experiences of transitioning from hospital to home in palliative care. Journal of Pain and Symptom Management. 2021; 62(3), e9-e19. View article

    Hospital-to-home transitions can be challenging for patients and family caregivers, especially at the end of life. There is a need to better understand the gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention that can improve the hospital to home transition. This study aimed to explore patients’ and caregivers’ expectations and experience of the hospital-to-home transition while receiving palliative care. We also aimed to build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. To do so, we conducted semi structured interviews with patients and caregivers at hospital discharge, and 3-4 weeks after discharge home to home-based palliative care. Using thematic analysis, we identified transition needs, health and well-being needs, and practical needs. We also identified enablers and disablers that impact the likelihood of needs being met. These included caregiver roles, education on symptom management, financial resources, and uncertainty.

  • Campos E, Isenberg SR, Lovblom LE, Mak S, Steinberg L, Bush SH, Graham C, Kavalieratos D, Tanuseputro P, Quinn K. Supporting the heterogenous and evolving treatment preferences of patients with heart failure through collaborative home-based palliative care. JAHA. 2022; 11(19): e026319. View article

    This study described the treatment preferences, care settings, and end-of-life outcomes for patients who had advanced heart failure and who were supported by a collaborative home-based model of palliative care. To do so, we organized patients into four groups by their initial treatment preferences. We measured outcomes such as location of death (hospital vs out of hospital), changes in treatment preferences, and health service use. We found that among those that initially prioritized quality of life, nearly 50% changed their treatment preferences. The majority changed their preferences to avoid hospitalization, and focus on comfort at home instead. Of those who originally prioritized quantity of life, they had decreased amounts of out-of-hospital death, and more frequent hospitalizations, in comparison to those who initially prioritized quality of life at home. This study provides a more detailed understanding of the interaction of advance care planning and patient preferences, and helps showcase that shared decision making is dynamic, and should be enacted earlier than the very end of life.

    Quinn K, Stukel TA, Campos E, Graham C, Kavalieratos D, Mak S, Steinberg L, Tanuseputro P, Tuna M, Isenberg SR. Regional collaborative home-based palliative care and health care outcomes among adults with heart failure. CMAJ. 2022; 194(37): E1274-E1282. View article

    Models of collaborative palliative care are urgently needed to meet gaps in end-of-life care among people with heart failure. This research aimed to determine whether collaborative, home-based palliative care was associated with a greater likelihood of patients dying at home than in hospital. To do so, we conducted a population-based matched cohort study of adults who died with chronic heart failure across two health regions in Ontario. We found that patients who received regionally organized, collaborative, home-based palliative care had a lower associated risk of dying in hospital, compared with the matched cohort who received usual care. The collaborative approach also allowed for higher rates of clinician home visits, longer time to first hospital admission, shorter hospitals stays, and more days spent at home. This research illustrates that this model may improve end-of-life outcomes for people with chronic heart failure.

    Graham C, Schonnop R, Killackey T, Kavalieratos D, Bush SH, Steinberg L, Mak S, Quinn K, Isenberg SR. Exploring health care providers’ experiences of providing collaborative palliative care for patients with advanced heart failure at home: a qualitative study. JAHA. 2022; 11(13): e024628. View article

    The HeartFull Collaborative is a regionally organized model of care that involves palliative care and cardiology healthcare providers who provide home-based palliative care for patients with advanced heart failure. This study aimed to evaluate healthcare provider perspectives of barriers and facilitators to providing coordinated palliative care for patients with advanced heart failure at home. To do so, we conducted semi-structured interviews with healthcare providers (palliative care and cardiology physicians and nurse practitioners) who were involved in the HeartFull Collaborative from 2013-2020. Using thematic analysis, we identified facilitators at the individual healthcare provider level, and at the interpersonal level. Ongoing barriers were identified at the individual healthcare provider level, and at the system level. Our findings suggest that this model of care leads to more comprehensive patient care, and that addressing ongoing barriers will help improve care delivery.

    Steinberg L, Isenberg SR, Mak S, Meaney C, Lokuge B, Arvanitis J, Goldman R, Wegier P, Husain A. HeartFull: Feasibility of an Integrated Program of Care for Patients with Advanced Stage Heart Failure. American Journal of Hospice Palliative Medicine. 2022. Online ahead of print. View article

    Patients at an advanced stage of heart failure have high mortality, utilize the healthcare system greatly, and have low palliative care involvement. The aim of this study was to determine the feasibility of recruiting patients and engaging cardiology and healthcare providers in HeartFull- a program that offers integrated care. We also aimed to determine the proportion of patients who died in non-acute care settings, and to describe patient-reported outcomes and pre-post comparison of healthcare utilization. To do so, we recruited patients with heart failure who were receiving 24/7 home palliative services. We found no significant different in pre- and post-intervention rates of hospitalizations or emergency visits, but both trended downward. No significant changes were found in patient-reported outcomes.

  • Isenberg SR, Meaney C, May P, Quinn K, Qureshi D, Saunders S, Tanuseputro P, Seow H, Smith TJ, Husain A, Lawlor PG, Fowler R, Lachance J, McGrail K, Hsu AT. The association between varying levels of palliative care involvement on costs during terminal hospitalizations in Canada from 2012 to 2015. BMC Health Services Research. 2021; 21(1): 331. View article

    Inpatient palliative care is associated with lower inpatient costs. However, this has yet to be studied using inpatient palliative care and a national population-representative dataset. The aim of this study was to describe patients’ receipt of palliative care and active interventions in their terminal hospitalization, and also examine the relationship between inpatient palliative care and hospitalization costs. To do so, we used a population-based cohort of Canadians who died in hospital between 2012-2015. We explored their level of palliative care involvement, and calculated acute care costs. We found that 250,640 adults died in hospital. The majority of individuals had no, or low, palliative care involvement, while 24% received medium-high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (no involvement), $1175 (low involvement), and $744 (medium-high involvement). Increased involvement of palliative care was associated with lower costs.

    Quinn KL, Isenberg SR, Downar J, Hsu A, Tanuseputro P, Bonares M, Barrett K, Kyeremanteng K, Fassbender K. 2021. Expensive Endings: Reining In the High Cost of End-of-Life Care in Canada. Commentary 608. October 2021.Toronto: C.D. Howe Institute. View article

    This commentary describes some of the gaps in the Canadian healthcare system that lead to costly and low-quality end-of-life practices. We also suggest some specific strategies that could help to address these gaps. Throughout the commentary, three major themes are present. First, Canada must stop treating end-of-life care as acute care. Second, palliative and end-of-life care must be provided across multiple healthcare settings— this responsibility cannot only fall on hospices and palliative-care facilities. Third, although people may benefit from a palliative care approach at almost any time in their life, the large majority of healthcare expenses occur during the last 3-4 months of life. To reduce costly and low-value end-of-life care, we need to identify and intervene during this period.

    Isenberg SR, Tanuseputro P, Spruin S, Seow H, Goldman R, Hsu AT. Cost-effectiveness of investment in end-of-life home care to enable death in community settings. Medical Care. 2020; 58(8): 665-673. View article

    Many people with terminal illness prefer to die in home-like settings instead of acute care hospitals. Examples of home-like settings includes homes, retirement homes, hospices, or palliative care units. Home-based palliative care services might increase the likelihood of death in a community setting, but providing these services may increase costs related to usual care. We aimed to estimate the cost per community death for persons enrolled in end-of-life home care in Ontario. To do so, we used a population-based cohort of older adults and determined the total cost of care in the last 90 days of life. We also determined the cost to achieve an additional community death for persons enrolled in end-of-life care, in comparison to those who did not receive home care services in the last 90 days of life. We found that those receiving end-of-life care were nearly three times more likely to experience a community death, and that the cost to achieve an additional community death by providing end-of-life care was CAD $995. Investing in a model to improve end-of-life care has the potential to improve the dying experience of those living in the community by reducing the amount of deaths in-hospital.

    Isenberg SR, Razzak R, Rabow M. and Smith TJ. “Financial aspects of outpatient palliative care.” Textbook of Palliative Care. Eds. Roderick MacLeod and Lieve Van den Block. Springer; 2019. View article

    Community-based palliative care (outpatient clinics and in the home) has become the focus of palliatives care’s growth and opportunity. Twelve of the largest randomized control trials on palliative care are community-based and result in equal or greater survival, positive satisfaction from patients and caregivers, and equal or less cost. With healthcare financing that embraces value-based programs such as shared savings, bundled payments, and global budget revenues, community-based palliative care shows great promise and may be part of the solution to provide better care for patients at an affordable cost. This textbook chapter summarizes the literature on the health economics of community-based palliative care, describes symptom management in home-based palliative care, highlights organizations that have been successful in their implementation of outpatient palliative care, and provides a blueprint on how to make outpatient palliative care sustainable and replicable.

    Isenberg SR, Smith TJ, Lu C, McQuade J, Razzak R. Impact of a new palliative care program on health system finances: An analysis of the palliative care program inpatient unit and consultations at Johns Hopkins Medical Institutions. Journal of Oncology Practice. 2017; 13(5): e421-e430. View article

    Palliative care inpatient units can improve symptoms, family perception of care, and lower costs compared to usual care. In 2013, Johns Hopkins Medical Institution added a palliative care inpatient unit to their palliative care program. This study aimed to investigate the financial impact of the palliative care program on Johns Hopkins Medical Institution from 2013-2014. To do so, we used admission data to consider costs associated with the palliative care unit, palliative care consultations, and professional fees. We found that the total positive financial impact of the palliative care program was $3,488,863.17 during the study timeframe. We determined that the palliative care unit and palliative care program had a favorable impact on the Johns Hopkins Medial Institution, while providing expert patient-centered care.

    Isenberg SR, Holtgrave, D., Smith, T.J., Lu, C., McQuade, J., Razzak, R. Economic Evaluation of a Hospital-Based Palliative Care Program. Journal of Oncology Practice. 2017; 13(5): e408-e420. View Article

    Inpatient palliative care programs are expanding. The expansion of these services proposes the question whether these resources meet societal thresholds for cost effectiveness. The purpose of this study was to establish costs of an inpatient palliative care unit, and to analyze the maximum possible costs for the palliative care unit to be considered cost effective. To do so, we considered variable costs, contribution margin, and palliative care unit cost savings in comparison to usual care. We determined that according to variable costs, the palliative care unit was not cost effective. However, in comparison to usual care, the palliative care unit was cost saving at a value of $353,645 ($452 savings per patient encounter per day) . The contribution margin showed that the palliative care unit was cost saving. This study supports efforts to expand PCUs, which enhance care for patients and their caregivers and can generate hospital savings. Future research should prospectively explore the cost utility of PCUs.

  • Isenberg SR. An unexpected preoperative conversation, a new perspective on palliative care research. Patient Education and Counselling. 2019; 102(8): 1570-1572. View article

    During the course of recruitment of a randomized control trial, Dr. Isenberg encountered a patient who changed her perspective on research and who inspires her to continue work in the field of palliative care. This paper describes the encounter with the patient, and Dr. Isenberg’s reflections on the conversation. This paper highlights the need to partake in shared decision making towards the end of life, and reinforces the value of discussing these topics before major surgeries and in complicated cases.

    Aslakson, RA, Isenberg SR, Crossnohere NL, Conca-Chang AM, Bhamidipati A, Mora S, Miller S, Singh S, Swoboda S, Pawlik T, Weiss M, Volandes AE, Smith TJ, Bridges J, Roter D. Integrating advance care planning videos into surgical oncologic care: a randomized clinical trial. Journal of Palliative Medicine.  2019; 22(7): 764-772. View article

    Preoperative advance care planning may be beneficial for patients who are undergoing surgery. Building off of the study protocols, the aim of this study was to evaluate whether the video-based advance care planning tool is safe, feasible, and effective for patients who are undergoing surgery. Patients were assigned to watch either an informational video, or a video about the hospitals surgical program. Results showed that the video was successfully integrated, and did not cause any harm. Patient-centeredness was unchanged, although there were more advance care planning discussions between patients who watched the intervention video. There were no differences in the satisfaction measures, Iowa Criteria Goals of Care survey, Hospital Anxiety and Depression scale, whether the patient had assigned a medical decision maker, or whether they had a conversation about care practices. However, the intervention video was found to be more helpful, in comparison to the information video.

    Isenberg SR, Aslakson RA, Dionne-Odom JN, Smith TJ, Smith KC, Singh S, Wolff JL, Roter D. Family companions’ involvement during pre-surgical consent visits for major cancer surgery and its relationship to visit communication and satisfaction. Patient Education and Counselling. 2018; 101(6): 1066-1074. View article

    Past studies have found relevance for companion involvement in surgical decisions. However, there has been little exploration of the companion’s role within pre-surgical visits where decisions about major elective cancer surgery are discussed. This study aimed to examine the association between family companion presence during pre-surgical visits to discuss major cancer surgery and patient-provider communication and satisfaction. To do so, we completed secondary analysis of pre-surgical visit recordings. Patients, companions, and surgeons also completed post-visit satisfaction questionnaires. We found that companion communication was emotional and facilitative. The presence of a companion was associated with more surgeon talk and medical information-giving, and less disclosure from patients.

    Isenberg SR, Crossnohere NL, Conca-Chang AM, Yang T, Weiss M, Bridges J, Smith TJ, Roter Volandes AE, Aslakson RA. An advance care plan decision support video before major surgery: a patient- and family-cantered approach. British Medical Journal Supportive and Palliative Care. 2018; 8(2): 229-236. View article

    Advance care planning involves individuals clarifying their medical and personal values, goals, and preferences. Video-based advance care planning tools have been studied in a variety of medical contexts. However, none have been developed for patients who are undergoing major surgery. Using a patient- and family-centered approach, we aimed to implement human-centered design to develop an advance care planning decision support video for patients and their family members when preparing for major surgery. To do so, we completed a six-stage human-centered design process to design, develop, test, and implement an advance care planning video tool that can be used for patients who will be undergoing surgery. We were able to successfully create a product that was acceptable to stakeholders, and was patient- and family-centered.

    Aslakson RA, Schuster ALR, Lynch TJ, Weiss MJ, Gregg L, Miller J, Isenberg SR, Crossnohere NL, Conca-Cheng AM, Volandes AE, Smith TJ, Bridges JFP. Developing the storyline for an advance care planning video for surgery patients: Patient-centered outcomes research engagement from stakeholder summit to State Fair. Journal of Palliative Medicine. 2018; 21(1): 89-94. View article

    Patient-centered outcomes research methods and social learning theory require intensive interaction between researchers and stakeholders. Advance care planning is valuable before major surgery, but a systematic review found no extant advance care planning tools. Consequently, patient-centered outcomes research methods and social learning theory can inform the development of an advance care planning educational video for patients and families preparing for major surgery. The objective of this research study was to develop and test the acceptability of an advance care planning video storyline. To do so, we worked with patients and family members to design and evaluate storyboards that contained the proposed storyline. Patients and family members evaluated and prioritized evidence from an environmental scan. A team consisting of a surgeon, family member, palliative care physician and graphic designer worked together to develop a script that features 12 core teams. Attendees from the Maryland State Fair reviewed the storyboards, and noted that they would be “comfortable” seeing the storyboard before major surgery, and thought it would be “helpful” for others preparing for major surgery.

    Aslakson RA, Isenberg SR, Crossnohere NL, Conca-Chang AM, Yang T, Weiss M, Volandes AE., Bridges J, Roter D. Utilizing advance care planning videos to empower perioperative cancer patients and families: The protocol for a patient-centered outcomes research institute-funded study. British Medical Journal (BMJ) Open. 2017; 7(5): e016257. View article

    This paper describes the study protocol of a randomized control trial. Positive health outcomes are associated with advance care planning, but little research has explored how advance care planning impacts those receiving surgery. This study aimed to explore how an advance care planning intervention video impacts the patient centeredness and advance care planning of conversations between patients and their surgeons during the presurgical consent visit. To do so, we recruited patients from nine surgical oncology clinics who were undergoing major cancer surgery, and randomly assigned into them two groups: one group viewed a patient preparedness video, and the second group viewed an informational video about the hospital surgical program. Data was collected from participants four different times (baseline, presurgical consent, postoperative 1 week, postoperative 1 month). Primary outcome was patient centredness as measured by the Roter Interaction Analysis System and advance care planning content in the presurgical consent visit. Secondary outcomes included patient Hospital Anxiety and Depression Scale score; patient goals of care; patient, companion and surgeon satisfaction; video helpfulness; medical decision maker designation; and the frequency patients watch the video.

  • Heidinger B, Downar A, Frolic A, Downar J, Isenberg SR. Understanding the physician and administrator experience of preparing to implement Ontario’s ICU Triage Emergency Standard of Care during the COVID-19 Pandemic: a qualitative study. 2023. In press.

    As the COVID-19 pandemic created a surge in demand for critical care resources, Ontario released the “Adult Critical Care Clinical Emergency Standard of Care for Major Surge” (ESoC)—a triage framework to guide the allocation of critical care resources in anticipation of intensive care units being overwhelmed. This study aimed to understand physicians’ and administrators’ experiences and perceptions of planning to implement the ESoC, and to identify opportunities for improvement of critical care triage processes for future pandemics.

    To do so, we conducted semi-structured qualitative interviews with physicians and hospital administrators who represented nine health regions within Ontario between April-October 2021. In addition to participant suggestions on how to improve preparation for ESoC implementation, four themes were identified regarding participants’ preparation to implement the ESoC: 1) Infrastructure to enable effective triage implementation; 2) Social, medical, and political supports to enable effective triage implementation; 3) Moral dimensions of triage implementation, and 4) Communication of triage results. Results indicated that the implementation of a jurisdiction-level triage framework poses moral challenges for a healthcare system, but also requires dedicated infrastructure, as well as institutional support. Insights gleaned from Ontario’s implementation preparation process, as well as participants’ suggestions, can be used when planning for current and future pandemics.

    Vincent D, Peixoto C, Kyeremanteng K, Quinn K, Lalumiere G, Kurahashi A, Gilbert N, Isenberg SR. Virtual Home-based Palliative Care During COVID-19: A qualitative exploration of the patient, caregiver and healthcare provider experience. Palliative Medicine. 2022. In press.

    The COVID-19 pandemic has forced many community palliative care providers to shift to virtual care, or a combination of in-person and virtual care. This study aimed to explore the experiences and perceptions of community palliative care providers, patients, and caregivers who delivered or received virtual palliative care during the pandemic. Using thematic analysis, we found that participants generally preferred in-person care, but suggested that virtual care could be a useful supplement to in-person care. The findings highlight the impact of the pandemic on community palliative care services, factors influencing the transition from exclusively virtual to a blended model of care, and recommended uses and implementation of virtual palliative care. The study suggests that incorporating virtual care into healthcare provider practice models may be the ideal model of care moving forward beyond the pandemic.

    Isenberg SR, Bonares M, Kuruhashi A, Algu K, Mahtani R. Race and birth country are associated with where patients are discharged to from hospital: A retrospective cohort study of health equity differences for patients receiving inpatient palliative care. Eclinical Medicine. 2022; 45(1): 101303. View article

    This retrospective cohort study investigated whether demographic variables such as age, gender, race/ethnicity, sexual orientation, income, birth country and language are associated with differences in clinical process indicators among patients receiving inpatient palliative care. Using electronic medical record data from Mount Sinai Hospital in Toronto, we found that variables such as birth country, race/ethnicity, and language were significantly associated with the disposition (i.e., discharge location) of patients receiving palliative care. Language was also found to be significantly associated with the time from admission to palliative care referral. However, there were no significant associations found between demographics and length of stay or time from referral to consultation. The study suggests that inequalities in disposition and referral to palliative care may exist based on demographics, and further research is needed to understand the underlying practices that maintain these inequalities.

    Quinn KL, Hsu AT, Qureshi D, Tanuseputro P, Seow H, McGrail K, Isenberg SR. Association between high-cost user status and hospital-based end-of-life care in Canada. Palliative Medicine. 2021; 35(9): 1671-1681. View article

    This study aimed to compare end-of-life care for patients who were high-cost users of the healthcare system with those who were not. To do so, we used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit, receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. We found that high-cost users were more likely to receive invasive interventions and major surgery, but less likely to receive palliative care compared to non-high-cost users. The study highlights the need for better care planning and provision for end-of-life care, particularly for those who were previously high- and non-high-cost users.

    Isenberg SR, Kavalieratos D, Chow R, Le LW, Wegier P, Zimmermann C. Assessing quality and bias of early palliative trials: a comparison of two tools. BMJ Supportive and Palliative Care. 2020; 59(2): 449-450. View article

    This study compared two tools used to evaluate the quality of research studies on palliative care. To do so, we reviewed 43 randomized controlled trials using both the Palliative Care Trial Assessment Tool (PCTAT) and the Cochrane Risk of Bias (RoB) tool. We found that trials with a low RoB tended to have higher PCTAT scores, indicating better quality. The researchers also found that the quality of reporting improved over time (as captured by the PCTAT), but the RoB did not. Overall, there was only fair agreement between the two tools, and they identified areas of disagreement or non-comparability. These results suggest that a specific tool to evaluate the quality of palliative care trials may be needed.

    Isenberg SR, Maragh-Bass AC, Ridgeway K, Knowlton AR. A Qualitative Exploration of Chronic Pain and Opioid Treatment among HIV Patients with Drug Use Disorders. Journal of Opioid Management. 2017; 13(1): 5-16. View article

    This study explored the experiences of individuals living with HIV with a history of drug use who also suffer from chronic pain, specifically looking at their access to and use of prescription opioids for pain management. To do so, we conducted qualitative interviews and focus groups with participants to gain insight into their experiences with healthcare providers and prescribed medication. We identified two major themes: participants had both positive and negative experiences with healthcare providers in relation to pain management, and they felt that the prescribed opioid analgesics they received were not sufficient in addressing their pain, resulting in rationing or modification of dosages, and sometimes even relapse to illicit drug use. Overall, the study suggests a need for additional therapies and guidelines for providers working with this population.

A Sampling of Past Projects