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Background: Hospital-to-home transitions in palliative care are fraught with challenges. To assess transitions researchers have used patient reported outcome measures and qualitative data to give unique insights into a phenomenon. Few measures examine care setting transitions in palliative care, yet domains identified in other populations are likely relevant for patients receiving palliative care. Aim: Gain insight into how patients experience three domains, discharge readiness, transition quality, and discharge-coping, during hospital-to-home transitions. Design: Longitudinal, convergent parallel mixed methods study design with two data collection visits: in-hospital before and 3–4 weeks after discharge. Participants completed scales assessing discharge readiness, transition quality, and post discharge-coping. A qualitative interview was conducted at both visits. Data were analyzed separately and integrated using a merged transformative methodology, allowing us to compare and contrast the data. Setting and participants: Study was set in two tertiary hospitals in Toronto, Canada. Adult inpatients ( n = 25) and their caregivers ( n = 14) were eligible if they received a palliative care consultation and transitioned to home-based palliative care. Results: Results were organized aligning with the scales; finding low discharge readiness (5.8; IQR: 1.9), moderate transition quality (66.7; IQR: 33.33), and poor discharge-coping (5.0; IQR: 2.6), respectively. 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. Conclusions: We identified aspects of these three domains that may be targeted to improve transitions through intervention development. Identified discrepancies between the data types should be considered for future research exploration.

We report an anterior translocation of the right pulmonary artery procedure to relieve severe left bronchial obstruction that was caused by right pulmonary artery stent placement in a 1-year-old patient with truncus arteriosus and interrupted aortic arch. After neonatal repair, the patient re-presented with severe truncal valve regurgitation, right pulmonary artery stenosis, and severe biventricular dysfunction, which was treated with truncal valve repair and right pulmonary artery plasty. The patient suffered from left bronchial compression from right pulmonary artery stent placement, which was successfully treated by the translocation procedure. Bronchial stenosis was successfully relieved by the translocation procedure. Indications, advantages, and disadvantages of this procedure are discussed.

Background: Home-based palliative care is care of the patient in their home, while doctors and other healthcare providers (HCPs) make visits as required. Family involvement naturally cultivates a relationship between HCPs and the family. Once the patient dies and home-based palliative care ends, this relationship is abruptly terminated, which may be challenging to both the family and the HCPs. The objective of this study was to understand the thoughts and opinions of HCPs and families on their encountered loss of relationship at the end of home-based palliative care. Methods: Perceptions of 63 participants (32 HCPs and 31 family members) were explored using semi-structured interviews and the qualitative research methodologies of grounded theory. HCPs were interviewed at the Temmy Latner Centre for Palliative Care (TLCPC), a home-based palliative care group of physicians, and 2 hospitals in Toronto, while family members were recruited from TLCPC’s records of deceased patients. Results: Six overarching themes, relating to HCP-family relationship dynamics, the experience of loss of relationship, and potential solutions, were derived from the data: (I) home palliative care is intimate; (II) dissatisfaction is experienced with abrupt relationship ending; (III) families benefit from open communication, especially after patient death; (IV) HCPs recognize the insufficiency in bereavement resources; (V) benefits are recognized for a system to ease loss of relationship, and lastly; (VI) challenges with introducing such a system concern HCP. Conclusions: Overall, families and HCPs do not like the loss of relationship post-patient death, and recognize the potential benefits of an approach that would allow for communication going forward.

Context Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. Objectives 1) Explore patients’ and caregivers’ expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. Methods Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. Results Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). Conclusion Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition.

Background Towards the end of life, use of opioid analgesics becomes more common in patients to control pain and improve quality of life. While pain medication may help manage pain, unwanted cognitive side effects are frequently noted. This balancing act presents a trade-off for patients between pain relief and adverse effects, where the desire to relieve pain must be evaluated against the desire to maintain cognitive clarity and may represent a difficult decision for patients receiving palliative care. Our goal was to understand how patients’ decision making about pain medications balances the pain relief from those medications against the cognitive decline often associated with them. Methods We conducted qualitative semi-structured interviews with patients receiving home-based palliative care from a program in Toronto, Canada. Interview recordings were transcribed and analyzed using thematic analysis. Results Thirty-one interviews were conducted. Some patients preferred cognitive preservation over pain management because of a sense that cognition is central to their identity, the desire to maintain lucidity, a desire to continue participating in work or hobbies, and fear of addiction. Conversely, some patients preferred pain management over cognitive preservation because of a desire to avoid suffering, an inability to sleep without medications, or an acceptance of some cognitive compromise. A few patients attempted to find balance through tapering drugs, limiting their use of breakthrough analgesic doses, or using alternative strategies. Conclusions Decision making around pain and pain management is a highly preference-sensitive process—with no clear right or wrong decisions, only the preferences of each patient. The findings from this study may influence the design of future patient-facing decision aids around pain management. Future studies should pilot interventions to better assist patients with this decision.

Context Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life. Objective To explore patient and caregiver understanding and valuation of “continuity of care” while transitioning from an in-hospital to a home-based palliative care team. Methods Longitudinal qualitative design using semistructured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using thematic analysis within a postpositivist framework. Thirty-nine participants (18 patients, seven caregivers, and seven patient-caregiver dyads) were recruited from two acute care hospitals, wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care. Results Patients had a mean age of 68 years, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 years and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced, as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers. Conclusion Patients' and their caregivers’ valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.

Background In this study we sought to determine whether preoperative superior vena cava (SVC) blood flow measured using cardiac magnetic resonance (CMR) predicts physiology and clinical outcome after bidirectional cavopulmonary shunt (BCPS). Methods The retrospective single-center study included 65 (2012-2017) patients who underwent BCPS. Preoperative CMR imaging, echocardiography, catheterization, and clinical outcomes were reviewed. SVC flow was measured using phase contrast CMR. The Kaplan-Meier method and Cox regression was used for BCPS takedown-free survival and predictor analyses. Results The absolute and indexed SVC flow was 0.5 (interquartile range [IQR], 0.4-0.7) L/min and 1.7 (IQR, 1.4-2.0) L/min/mm2 respectively, which was comparable with the SVC blood flow volume previously measured. The median age and body weight at BCPS was 6.5 (IQR, 5.5-8.5) months and 6.9 (IQR, 6.0-7.7) kg. After follow-up, at a median of 17.1 (IQR, 7.9-41.3) months, 14 patients (21.5%) underwent the Fontan completion and 40 (61.5%) with BCPS physiology were waiting for the Fontan completion. The 11 remaining patients (16.9%), included those who underwent takedown (n = 7; 10.8%) or died with a BCPS (n = 4; 6.2%). Severe hypoxia was the leading cause of mortality, directly accounting for two-thirds of deaths (66.6%; 6/9). The BCPS takedown-free survival was 96.8% at 6 months, and 79.9% at 3 years. Preoperative SVC blood flow was significantly positively correlated with early post-BCPS arterial saturation (P = .00). The multivariable analysis showed SVC flow was the only factor associated with BCPS failure (hazard ratio, 0.186; P = .04) among the predictors related to the pre-BCPS anatomy and physiology. Conclusions SVC blood flow might be as critically important as pulmonary artery anatomic and physiologic parameters in the evaluation of BCPS candidacy in the single-ventricle population.

BackgroundWhile a number of pharmacological interventions exist for the treatment of opioid use disorder, evidence evaluating the effect of pain on substance use behavior, attrition rate, and physical or mental health among these therapies has not been well established. We aim to evaluate these effects using evidence gathered from a systematic review of studies evaluating chronic non-cancer pain (CNCP) in patients with opioid use disorder.MethodsWe searched the Medline, EMBASE, PubMed, PsycINFO, Web of Science, Cochrane Database of Systematic Reviews, ProQuest Dissertations and theses Database, Cochrane Central Register of Controlled Trials, World Health Organization International Clinical Trials Registry Platform Search Portal, and National Institutes for Health Clinical Trials Registry databases to identify articles evaluating the impact of pain on addiction treatment outcomes for patients maintained on opioid agonist therapy.ResultsUpon screening 3,540 articles, 14 studies with a combined sample of 3,128 patients fulfilled the review inclusion criteria. Results from the meta-analysis suggest that pain has no effect on illicit opioid consumption [pooled odds ratio (pOR): 0.70, 95%CI 0.41–1.17; I2= 0.0] but a protective effect for reducing illicit non-opioid substance use (pOR: 0.57, 95%CI 0.41–0.79; I2= 0.0). Studies evaluating illicit opioid consumption using other measures demonstrate pain to increase the risk for opioid abuse. Pain is significantly associated with the presence of psychiatric disorders (pOR: 2.18; 95%CI 1.6, 2.9; I2= 0.0%).ConclusionCNCP may increase risk for continued opioid abuse and poor psychiatric functioning. Qualitative synthesis of the findings suggests that major methodological differences in the design and measurement of pain and treatment response outcomes are likely impacting the effect estimates.