Practices of and Perspectives on Palliative Sedation Among Palliative Care Physicians in Ontario, Canada: A Mixed-Methods Study.

Background: Palliative sedation (PS) is a therapeutic intervention employed to manage severe and refractory symptoms in terminally ill patients at end of life. Inconsistencies in PS practice guidelines coupled with clinician ambiguity have resulted in confusion about how PS is best integrated into practice. Understanding the perspectives, experiences, and practices relating to this modality will provide insight into its clinical application and challenges within the palliative care landscape. Objective: The aim is to explore the perspectives of palliative care physicians administering PS, including how practitioners define PS, factors influencing decision making about the use of PS, and possible reasons for changes in practice patterns over time. Methods: A survey (n = 37) and semistructured interviews (n = 23) were conducted with palliative care physicians throughout Ontario. Codes were determined collaboratively and applied line-by-line by two independent investigators. Survey responses were analyzed alongside interview transcripts and noted to be concordant. Themes were generated through reflexive thematic analysis. Results: Five key themes were identified: (1) lack of standardization, (2) differing definitions, (3) logistical challenges, (4) perceived "back-up" to Medical Assistance in Dying, and (5) tool of the most responsible physician. Conclusion: There was significant variability in how participants defined PS and in frequency of use of PS. Physicians described greater ease implementing PS when practicing in palliative care units, with significant barriers faced by individuals providing home-based palliative care or working as consultants on inpatient units. Educational efforts are required about the intent and practice of PS, particularly among inpatient interprofessional teams.

A Case report of a continuous ambulatory drug delivery (CADD) pump to deliver opioid agonist treatment in an acute care setting.

BACKGROUND: People with substance use disorder are at risk of complications of drug use and frequent hospitalization and may continue to use substances during admission to acute care. Acute care harm reduction strategies including oral or injectable prescription opioids may aid in care retention and improve health outcomes in this patient population. CASE PRESENTATION: A 58-year-old woman with refractory opioid use disorder was admitted to hospital for management of dysphagia secondary to esophageal stricture. She received injectable opioid agonist therapy using a continuous ambulatory drug delivery (CADD) pump in order to facilitate completion of her hospital admission. CONCLUSIONS: The patient successfully received acute medical care with the use of a CADD pump for consistent, patient-controlled opioid administration, with the support of an interdisciplinary team and by respecting the patient's own substance use goals.

Use of palliative sedation following Medical Assistance in Dying (MAiD) legislation: A mixed-methods study of palliative care providers.

OBJECTIVES: Palliative sedation (PS) and Medical Assistance in Dying (MAiD) are options for end-of-life (EOL) care in Canada, since the latter was legalized in 2016. Little research to date has explored the potential impact of MAiD on PS practices. This study investigated physicians' perceptions of their practices surrounding PS and how they may have changed since 2016. METHODS: A survey (n=37) and semi-structured interviews (n=23) were conducted with palliative care providers throughout Ontario. Questions focused on PS practices and explored potential changes following the implementation of MAiD. Codes were determined collaboratively and applied line-by-line by 2 independent investigators. Survey responses were analyzed alongside interview transcripts and noted to be concordant. Themes were generated via reflexive thematic analysis. RESULTS: Thematic analysis yielded the following themes: (1) Increased patient/family knowledge of EOL care; (2) More frequent/fulsome discussions; (3) Normalization/repositioning of PS; and (4) Conflation and differentiation of PS/MAiD. Across these themes, participants espoused increased patient, family, and provider comfort with PS, which may stem equally from the advent of MAiD and the growth of palliative care in general. Participants also emphasized that, following MAiD, PS is viewed as a less radical intervention. SIGNIFICANCE OF RESULTS: This is the first study to investigate physicians' perspectives on the impact of MAiD on PS. Participants strongly opposed treating MAiD and PS as direct equivalents, given the differences in intent and eligibility. Participants stressed that MAiD requests/inquiries should prompt individualized assessments exploring all avenues of symptom management - the results of which may or may not include PS.

Factors that Delay Transfers from Acute Care to a Local Palliative Care Unit.

For patients desiring end-of-life care in a palliative care unit, ensuring a safe and timely transfer while reducing length of stay in acute care is optimal. A chart review of 130 patients was completed on those who either died in acute care or were transferred to a palliative care unit. In all, 31% of patients died in acute care and 69% were transferred to a palliative care unit. Barriers impacting a timely transfer included disposition planning, behavioural changes requiring monitoring, imminently dying patients and those awaiting medical assistance in dying. This article makes clinical recommendations to address these barriers.

Impact of legalization of Medical Assistance in Dying on the Use of Palliative Sedation in a Tertiary Care Hospital: A Retrospective Chart Review.

BACKGROUND: Patients approaching end of life may experience intractable symptoms managed with palliative sedation. The legalization of Medical Assistance in Dying (MAiD) in Canada in 2016 offers a new option for relief of intolerable suffering, and there is limited evidence examining how the use of palliative sedation has evolved with the introduction of MAiD. OBJECTIVES: To compare rates of palliative sedation at a tertiary care hospital before and after the legalization of MAiD. METHODS: This study is a retrospective chart analysis of all deaths of patients followed by the palliative care consult team in acute care, or admitted to the palliative care unit. We compared the use of palliative sedation during 1-year periods before and after the legalization of MAiD, and screened charts for MAiD requests during the second time period. RESULTS: 4.7% (n = 25) of patients who died in the palliative care unit pre-legalization of MAiD received palliative sedation compared to 14.6% (n = 82) post-MAiD, with no change in acute care. Post-MAiD, 4.1% of deaths were medically-assisted deaths in the palliative care unit (n = 23) and acute care (n = 14). For patients who requested MAiD but instead received palliative sedation, the primary reason was loss of decisional capacity to consent for MAiD. CONCLUSION: We believe that the mainstream presence of MAiD has resulted in an increased recognition of MAiD and palliative sedation as distinct entities, and rates of palliative sedation increased post-MAiD due to greater awareness about patient choice and increased comfort with end-of-life options.

Characteristics of Older Adults Accessing Medical Assistance in Dying (MAiD): a Descriptive Study.

BACKGROUND: Medical Assistance in Dying (MAiD) is an end-of-life option for Canadians accounting for 2% of all deaths in Canada in 2019. Adults over 80 years old represent a significant proportion of these deaths, yet little is known about how they compare with their younger counterparts. METHODS: This study retrospectively reviewed our tertiary care institution's MAiD database to compare MAiD recipients <65, 65-80, and >80 years of age. Extracted data included basic demographics, illness characteristics, functional status, social living arrangements/contacts, and outcomes of MAiD assessments. RESULTS: Of 267 patients assessed for MAiD, 38.2% were over 80. Compared to the younger groups, those over 80 were more likely to be female, to live alone, and to be widowed; however, they did not self-identify as 'socially isolated'. The majority fit into the illness categories of malignancy, cardiopulmonary or neurologic diseases, but those over 80 were more likely to have other more chronic/subacute conditions leading to the MAiD request. CONCLUSIONS: Older adults accessing MAiD are distinct in that they tend to be increasingly frail and without a predominant underlying diagnosis as compared with younger adults, but rather have an accumulation of losses resulting in global functional decline and subsequent loss of autonomy and independence.

High rates of psychiatric comorbidity among requesters of medical assistance in dying: Results of a Canadian prevalence study.

INTRODUCTION: Medical assistance in dying (MAID) was legalized in Canada in 2016. We aimed to characterize the prevalence of psychiatric comorbidity among MAID requesters in order to enhance clinicians' awareness of the potential for psychiatric needs among MAID requesters. METHODS: Using chart review, we retrospectively abstracted demographic, clinical, and psychosocial variables of MAID requesters at our institution, a 638-bed tertiary care center in Toronto, Canada. Patients requesting MAID between June 2016 and April 2019 were included. Psychiatric comorbidity was the primary dependent variable. RESULTS: 155 patients requested MAID during the study period. Among them, 60 (39%) had documented psychiatric comorbidity, most commonly depression (n=44; 73%). Severe mental illness accounted for 10 cases (6.5% of the total sample). Among patients with psychiatric comorbidity, 25 (41.7%) had at least one MAID eligibility assessment conducted by a psychiatrist, compared to 16 (16.8%) patients without psychiatric comorbidity (χ2=11.649, df=1, p=0.001). Among the 10 patients with severe mental illness (SMI), a psychiatrist conducted a MAID eligibility assessment in 8 patients (80%), compared to 17 patients (34%) without SMI (χ2=7.255, df=1, p=0.007). CONCLUSION: Patients with psychiatric comorbidity comprise a substantial proportion of patients requesting MAID. These findings highlight the importance of recognizing the psychiatric needs of MAID requesters and involving psychiatry in MAID assessments when warranted. A gap still exists in understanding which factors are most important in determining the need for psychiatric involvement in MAID assessments. We propose recommendations borne from our clinical experience.

Patient-Reported Pain in Patients with Breast Cancer Who Receive Radiotherapy.

BACKGROUND: Patients who receive radiation treatment (RT) for breast cancer often report pain, which contributes negatively to quality of life (QoL). AIMS: To identify demographic, treatment, and disease characteristics associated with pain and changes in pain before and after RT using the Edmonton Symptom Assessment Scale (ESAS). DESIGN: Retrospective study. SETTINGS: Odette Cancer Centre. PARTICIPANTS: Patients diagnosed with nonmetastatic breast cancer from January 2011-June 2017 with at least one ESAS completed pre-RT and one completed post-RT. METHODS: Data on systemic treatment, radiation, patient demographics, and disease stage were extracted. To identify factors associated with pain before and after RT and changes in pain, univariate and multivariate general linear regression analysis were conducted. p < .05 was considered statistically significant. RESULTS: This study included 1,222 female patients with a mean age of 59 years. ESAS was completed an average of 28 days before RT (baseline) and 142 days after RT, respectively. In multivariable analysis, higher baseline pain scores were associated with having recently completed adjuvant chemotherapy (p = .002) and eventual receipt of locoregional (p = .026) or chest wall (p = .003) radiation. Adjuvant chemotherapy (p = .002) and chest wall radiation (p = .03), were associated with a significant reduction in pain score after radiotherapy, while locoregional RT was associated with a higher pain score after RT (p < .001). CONCLUSIONS: Patients with locoregional RT had higher baseline pain that remained elevated after RT completion and should be screened for pain and provided with pain management and support when necessary.

Self-reported pain in breast cancer patients receiving adjuvant radiotherapy.

PURPOSE: Breast cancer patients receiving radiotherapy (RT) commonly report pain, contributing to physical and emotional distress, and potentially resulting in poor quality of life. This study prospectively identified trends and risk factors in patient-reported pain associated with breast irradiation using the Edmonton Symptom Assessment Scale (ESAS) and a study-specific Skin Symptom Assessment (SSA). METHODS: Before RT and once per week during RT, patients completed the ESAS and SSA. Upon RT completion, patients were contacted via telephone to complete both assessments weekly for 6 weeks, and a final assessment was conducted 1-3 months post-RT. Only data from patients who had completed both assessments before, at least once during, and at least once after RT were included in our analysis. RESULTS: A total of 426 patients provided data for the analysis. Overall acute pain increased significantly at week 1-2 (p < 0.0001), week 5 (p = 0.0011), and at 1-3 months (p < 0.0001) post-RT compared with baseline, and acute breast pain increased significantly at week 1 (p < 0.001) and week 2 (p = 0.0002) post-RT compared with baseline. Previous chemotherapy (adjuvant or neoadjuvant) in mastectomy patients was associated with increased overall pain compared with mastectomy patients without previous chemotherapy (p = 0.017). Younger patients (40-49 or 50-59 years of age) reported more overall pain (p = 0.0001, p = 0.038) and breast pain (p = 0.0003, p = 0.0038) compared with patients ≥ 60 years of age. CONCLUSIONS: Patient-reported pain associated with breast irradiation peaked 1 week after RT completion. Our findings provide support for closer monitoring of acute pain associated with breast RT in younger patients.

Factors predicting the risk of loss of decisional capacity for medical assistance in dying: a retrospective database review.

BACKGROUND: Bill C-14, the legislation that legalized medical assistance in dying (MAiD) in Canada in 2016, outlines eligibility criteria and includes both a mandated 10-day reflection period and a requirement that the patient have capacity to consent at the time MAiD is provided. We examined clinical factors associated with shortened reflection periods or loss of capacity before provision of MAiD. METHODS: This retrospective database review involved patients who requested MAiD at a tertiary care hospital in Toronto, Canada, between June 2016 and April 2019. We used logistic regression analyses to examine the association between the combined outcome of unanticipated loss of decisional capacity, shortening of the reflection period or death and the clinical risk factors of interest (age, sex, location of MAiD request [inpatient v. outpatient], score on palliative performance scale [PPS] and diagnosis [cancer v. noncancer]). We generated receiver operating characteristic curves to identify the PPS score (encompassing 5 functional domains: ambulation, activity level, self-care, intake and level of consciousness) that best predicted loss of capacity, shortening of the reflection period or death. RESULTS: In total, 155 patients requested assessment for MAiD, and 136 of these were included in the statistical analyses. For 68 patients, the reflection period was not shortened; the other 68 patients lost capacity, died or required shortening of the reflection period. In contrast to the results for age, sex, location of request and diagnosis, the PPS score was associated with loss of capacity or shortening of the reflection period (odds ratio 4.63, 95% confidence interval 2.87-8.23, per 10-point decrease in PPS score). PPS scores less than or equal to 40% balanced sensitivity, specificity and negative predictive value while emphasizing sensitivity to prevent false negative errors. INTERPRETATION: The PPS score at the time of MAiD request was strongly associated with loss of capacity or shortening of the reflection period, with lower scores incrementally increasing the risk of these outcomes. For patients with a PPS score of 40% or below, close monitoring is warranted, potentially with plans made to allow rapid provision of MAiD should their clinical condition deteriorate.

Improving the Management of Terminal Delirium at the End of Life.

OBJECTIVE: Terminal delirium is a distressing process that occurs in the dying phase, often misdiagnosed and undertreated. A hospital developed the "comfort measures order set" for dying patients receiving comfort care in the final 72 h of life. A chart review of patients experiencing terminal delirium revealed that the current medication option initially included in the order set was suboptimally effective and patients with terminal delirium were consistently undertreated. The purpose of this pilot study was to highlight an in-service intervention educating nurses on the management of terminal delirium at the end of life and to assess its effect on their knowledge of the management of patients with terminal delirium. METHODS: A before-and-after survey design was used to assess the effect of the in-service training on nurses' knowledge of terminal delirium. RESULTS: We describe the results from a small sample of nurses at a large urban tertiary care center in Canada. Of the twenty nurses who attended the in-services, 60% had cared for a patient with terminal delirium; however, 50% felt that their knowledge of the topic was inadequate. Despite no statistical significance between the pre- and posttest scores for both the oncology and the medicine unit nurses, all participants who completed posttest survey found the in-services useful. CONCLUSIONS: The findings from this study provide initial insights into the importance of in-service trainings to improve the end-of-life care and nursing practice. Future research will include expanding this pilot project with sufficient power to assess the significance of these types of interventions.

Medical Assistance in Dying (MAiD): A Descriptive Study From a Canadian Tertiary Care Hospital.

BACKGROUND: In June 2016, the Government of Canada passed Bill C-14 decriminalizing medically assisted death. Increasing numbers of Canadians are accessing medical assistance in dying (MAiD) each year, but there is limited information about this population. OBJECTIVE: To describe the characteristic outcomes of MAiD requests in a cohort of patients at an academic tertiary care center in Toronto, Ontario, Canada. METHODS: A retrospective chart review of patients making a formal request for a MAiD eligibility assessment from July 16 to September 18. Data extracted included demographics, diagnosis, psychosocial characteristics, information relating to the MAiD request, and clinical outcome. RESULTS: We received 107 formal requests for MAiD assessment. Ninety-seven patients were found eligible, of whom 80 received MAiD. Cancer was the primary diagnosis for 78% and median age was 74 years. The majority of patients (64%) cited "functional decline or inability to participate in meaningful activities" as the main factor motivating their request for MAiD. Half of patients who received MAiD (46%) described their request as consistent with a long-standing, philosophical view predating their illness. The 10-day reflection period was reduced for 39% of provisions due to impending loss of capacity. Our cohort was very similar demographically to those described both nationally and internationally. CONCLUSION: Patients seeking MAiD at our institution were similar to those described in other jurisdictions where assisted dying is legal and represent a group for whom autonomy and independence is critical. We noted a very high rate of risk of loss of capacity, suggesting a need for both earlier assessments and regular monitoring.

Diphenhydramine Use Disorder and Complicated Withdrawal in a Palliative Care Patient.

Diphenhydramine (DPH) is an over-the-counter antihistamine medication commonly used for symptom management in palliative care. Despite the ease of access and perceived safety of DPH, there is documented evidence of potential for abuse of this medication. We present a case of a 61-year-old man with metastatic carcinoma of the distal esophagus, who was initially admitted with a pain crisis but subsequently developed a severe DPH withdrawal syndrome consisting of hyperactive delirium, autonomic dysfunction, and increased muscle tone. With careful selection of the antipsychotic agent loxapine, additional symptom management medications and scheduled tapering the patient was able to be discharged home for end-of-life care. We highlight the challenges of recognizing and managing a withdrawal syndrome in patients with terminal illnesses at end of life.

Patient-reported fatigue in breast cancer patients receiving radiation therapy.

PURPOSE: Fatigue or tiredness is one of the most commonly reported symptoms in breast cancer patients treated with radiation therapy (RT). This study aimed to identify characteristics associated with fatigue in breast cancer patients receiving adjuvant RT. METHODS: Patients with non-metastatic breast cancer receiving RT at the Odette Cancer Centre from 2011 to 2017 were included in our study if they completed at least one ESAS pre- and post-RT. Information regarding patient, disease and treatment characteristics was retrieved from chart review. To identify variables associated with fatigue scores pre-RT, post-RT and changes in fatigue scores, a univariate and multivariate general linear regression analysis was conducted; p < 0.05 was considered statistically significant. RESULTS: Our study included 1223 female patients (mean age 59 years old) who completed ESAS on average 28 days before, and 142 days after RT. In multivariate analysis, higher baseline fatigue scores were found in women with higher disease stages (p = 0.001), and those who receive locoregional radiation (p < 0.001). No variables were significantly associated with post-RT fatigue scores. While adjuvant chemotherapy and locoregional RT were associated with higher baseline scores in univariate analysis, in multivariate analysis, they were associated with significant reduction in fatigue post-RT (p = 0.01, p = 0.007 respectively). CONCLUSIONS: Fatigue is associated with higher disease stage and receipt of locoregional radiation. While the relationship between anxiety or depressive symptoms and fatigue is well-established, a major gap exists in our understanding of its etiology and treatment; further investigation to address this can better improve patient quality of life.

Percutaneous Transesophageal Gastrostomy (PTEG): A Safe and Well-Tolerated Procedure for Palliation of End-Stage Malignant Bowel Obstruction.

CONTEXT: Malignant bowel obstruction (MBO) is a frequent complication in patients with advanced cancer. Symptom management for patients with end-stage MBO can be challenging, especially when venting gastrostomy is contraindicated. Percutaneous transesophageal gastrostomy (PTEG) is an alternative option allowing safe and effective symptom management in palliative care patients. OBJECTIVES: We describe our experience with an initial series of 10 patients with MBOs refractory to medical management who received PTEG for gastrointestinal decompression, with a focus on palliative outcomes and safety. METHODS: We retrospectively reviewed the charts of 10 patients with advanced malignancy and associated gastrointestinal obstruction who received PTEG for symptom management between March 2018 and November 2018. We report on patient diagnosis, indications for PTEG, outcomes after insertion, and any associated morbidity and mortality. RESULTS: PTEGs were successfully inserted in all 10 patients with contraindications to a venting gastrostomy. There were no acute postprocedural complications. Median time from PTEG insertion to death was 15 days. Symptoms of MBO improved in all 10 patients, and all were able to resume some degree of oral intake. Importantly, unlike with venting gastrostomies, all patients required suction to maintain resolution of MBO symptoms. CONCLUSION: PTEG should be considered for gastrointestinal decompression in patients with MBO who are not candidates for surgical decompression or standard venting gastrostomy. This safe and effective procedure improves symptom management and quality of life for patients with MBO who are approaching end of life.

Exploration of Families' Experiences Caring for Loved Ones With Advanced Ovarian Cancer.

Ovarian cancer is challenging, both physically and psychologically, because of the advanced nature of the disease at diagnosis, adverse effects of the disease and treatment, and impact on roles and responsibilities. The family plays an integral role in promoting and maintaining the health of family caregivers, as well as providing physical and emotional support. The purpose of this study was to explore the experience of family caregivers caring for their loved ones with advanced ovarian cancer. Thirteen family caregivers were interviewed. The analysis of the data revealed 4 significant challenges that characterized the caregiving experience over time: confronting the initial diagnosis, dealing with fluctuations in physical status, confronting a turning point, and facing decline and death. Woven throughout these challenges, family caregivers routinely described difficulties in accessing information and navigating the health care system, which caused them added concern and frustration.

A systematic review of primary care models for non-communicable disease interventions in Sub-Saharan Africa.

BACKGROUND: Chronic diseases, primarily cardiovascular disease, respiratory disease, diabetes and cancer, are the leading cause of death and disability worldwide. In sub-Saharan Africa (SSA), where communicable disease prevalence still outweighs that of non-communicable disease (NCDs), rates of NCDs are rapidly rising and evidence for primary healthcare approaches for these emerging NCDs is needed. METHODS: A systematic review and evidence synthesis of primary care approaches for chronic disease in SSA. Quantitative and qualitative primary research studies were included that focused on priority NCDs interventions. The method used was best-fit framework synthesis. RESULTS: Three conceptual models of care for NCDs in low- and middle-income countries were identified and used to develop an a priori framework for the synthesis. The literature search for relevant primary research studies generated 3759 unique citations of which 12 satisfied the inclusion criteria. Eleven studies were quantitative and one used mixed methods. Three higher-level themes of screening, prevention and management of disease were derived. This synthesis permitted the development of a new evidence-based conceptual model of care for priority NCDs in SSA. CONCLUSIONS: For this review there was a near-consensus that passive rather than active case-finding approaches are suitable in resource-poor settings. Modifying risk factors among existing patients through advice on diet and lifestyle was a common element of healthcare approaches. The priorities for disease management in primary care were identified as: availability of essential diagnostic tools and medications at local primary healthcare clinics and the use of standardized protocols for diagnosis, treatment, monitoring and referral to specialist care.