Journal of Palliative Care

Following the Supreme Court of Canada’s Carter Decision, medical assistance in dying (MAID) became possible with individual court orders in February 2016. Subsequently, on June 17, 2016, legislation was passed that eliminated the need for court orders, essentially making physicians the arbiters of these requests. Canadian health-care facilities now face the challenge of addressing this unprecedented patient health-care need.

To describe the manner in which London Health Sciences Center has approached local and regional requests for MAID, including the administration, ethics, privacy, and clinical process.

A health-care systems descriptive study.

Between June 6, 2016, and May 30, 2018, London Health Sciences Center’s MAID Internal Resource Committee triaged and referred 260 cases. Ninety-six received the requisite assessments were deemed eligible for and received MAID.

The procedure was completed in hospital 59 (61%) times, and 37 (39%) times in the community (either private residence or long-Term Care facility). Nineteen patients did not meet MAID criteria and 63 patients died while awaiting the procedure. The median wait time between first request and referral was 1 day. The median time between referral and the procedure was 12.0 days. The ratio of referrals to completed cases is 96 of 260 (or 37% conversion rate).

Our MAID processes, including our committee structure, referral triage process, and physical site have all undergone extensive review and improvement cycles throughout these first 2 years with the aim of ensuring that this procedure is managed in a respectful, confidential, safe, efficient, and patient-centered manner.

Dyspnea is distressing in palliative patients with end-stage heart failure and many are hospitalized to optimize this symptom. We hoped to conduct a pilot study to determine whether the administration of intranasal fentanyl would decrease activity-induced dyspnea in this patient population.

Patients performed two 6-minute walk tests with and without the administration of 50 μg of intranasal fentanyl. Vital signs were recorded before and after each walk, as were participant reported dyspnea and adverse events scores.

Twenty-four patients were screened, 13 were deemed eligible, and 6 completed the study. Dyspnea scores changed from a mean of 6.00 immediately after the walk without fentanyl to a mean of 3.83 after the walk with fentanyl (P = .048). Mean respiratory rate decreased from 21.0 to 18.7 (P = .034) breaths per minute and was considered a favorable outcome by the participants. Distance walked did not significantly increase with the fentanyl pretreatment (136.0-144.2 m; P = .283), although the participants reported feeling better while walking a similar distance.

In this pilot study, the preadministration of intranasal fentanyl prior to activity in palliative, end-stage hospitalized heart failure patients, safely reduced tachypnea, and the feeling of shortness of breath. This approach may help palliate advanced heart failure patients by alleviating symptoms brought on by exertional activities.

Models of early, community-based palliative care for individuals with New York Heart Association (NYHA) class III/IV heart failure and their families are lacking. We used the Medical Research Council process of developing complex interventions to conduct a formative evaluation study to translate an early palliative care intervention from cancer to heart failure.

One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient–caregiver dyad participants who completed Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare For Patient and Caregivers (ENABLE CHF-PC) intervention. The ENABLE CHF-PC consists of an in-person palliative care assessment, weekly telehealth coaching sessions, and monthly follow-up. Subsequent to completing the coaching sessions, patient and caregiver participants were interviewed to elicit their experiences with ENABLE CHF-PC. Digitally recorded interviews were transcribed and analyzed using a thematic approach.

Patients (n = 8) mean age was 67.3, 62.5% were female, 75% were married/living with a partner; caregivers (n = 8) mean age was 56.8, and 87.5% were female. Four themes related to experiences with ENABLE CHF-PC included “allowed me to vent,” “gained perspective,” “helped me plan,” and “gained illness management and decision-making skills.” Recommendations for intervention modification included (1) start program at diagnosis, (2) maintain phone-based approach, and (3) expand topics and modify format.

Patients and caregivers unanimously found the intervention to be helpful and acceptable. After incorporating modifications, ENABLE CHF-PC is currently undergoing efficacy testing in a large randomized controlled trial.

Transcatheter aortic valve replacement (TAVR) and surgical aortic valve replacement (SAVR) have become a reasonably safe procedure with acceptable morbidity and mortality rate. However, little is known regarding the incidence, trends, and predictors of palliative care (PC) consult in aortic valve replacement (AVR) patients. The main purpose of this analysis was to assess the incidence, trends, and predictors of PC consultation in AVR recipients using the Nationwide Inpatient Sample (NIS) database.

We queried the NIS database from 2005 to September 2015 to identify those who underwent TAVR or SAVR and had PC referral during the index hospitalization. Adjusted odds ratio (aOR) was calculated to identify patient demographic, social and hospital characteristics, and procedural characteristics associated with PC consult using multivariable regression analysis. We also reported the trends of PC referral in AVR recipients.

A total of 522 765 admissions (mean age: 75.3 ± 7.8 years, 40.3% female) who had TAVR (1.7% transapical and 9.2% endovascular approach) and SAVR (89.2%) were identified. Inpatient mortality was 3.96%, and 0.5% patients of the total admissions had PC consultation. The PC referral for SAVR increased from 0.90 to 7.2 per 1000 SAVR from 2005 to 2015 (P = .011), while it remained stable ranging from 9.30 to 13.3 PC consults per 1000 TAVR (P = .86). Age 80 to 89 (aOR: 1.93), age ≥90 years (aOR: 2.57), female sex (aOR: 1.36), electrolyte derangement (aOR: 1.90), weight loss (aOR: 1.88), and do not resuscitate status (aOR: 44.4) were associated with PC consult. West region (aOR: 1.46) and Medicaid (aOR: 3.05) were independently associated with PC consult. Endovascular (aOR: 1.88) and transapical TAVR (aOR: 2.80) had higher PC referral rates compared with SAVR.

There was an increase in trends for utilization of PC service in SAVR admissions while it remained unchanged in TAVR cohort, but the overall PC referral rate was low in AVR recipients during the index hospitalization.

The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups.

A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being.

There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains (“Rate your overall physical/psychological/social/spiritual well-being”). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL.

This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.

Pain is highly prevalent in advanced cancer and requires aggressive management. However, pain management in cancer is minimally investigated in Pakistan. This cross-sectional study explores the adequacy of pain management in patients with advanced stage cancer in Pakistan.

From January 2017 to May 2017, a cross-sectional study was conducted at Mayo Hospital, Lahore, Pakistan. A total of 218 patients with cancers were interviewed, and 136 patients with pain ≥5 on a Numerical Rating Scale for pain were included in the study. Demographic of patients and clinical characteristics of tumors were also evaluated.

Only about one-third of the patients with advanced cancer reported adequate pain management. Chi-square test, χ² (1, n = 136) = 33.038, P < .05, indicated that pain scores were inversely associated with pain control; inadequate pain control was observed in patients with higher pain score and vice versa. Of the 55.88% of patients who were prescribed morphine, only 6 patients were compliant with treatment recommendations. Most patients were prescribed nonopioid medications and tramadol and codeine, which are weak opioid medications.

The rate of undertreatment of cancer pain in Pakistan is alarming. Inadequate clinicians’ training, patients’ and caregivers’ beliefs, lack of availability of opioid medications, and socioeconomic factors are some of the barriers to effective pain control. A multidisciplinary team approach is necessary to follow the World Health Organization pain ladder guidelines for the treatment of cancer pain.

Lack of education and training in palliative care has been described to be one of the most important barriers to pediatric palliative care implementation.

To examine what factors determine the degree of knowledge and level of comfort Mexican pediatricians have providing pediatric palliative care.

A questionnaire that assessed palliative care concepts was developed and applied online to Mexican pediatricians, both generalists and specialists.

A total of 242 pediatricians responded. The majority had not received palliative care education (92.6%) and felt uncomfortable discussing palliative needs with patients and families (92.1%). The mean score of the questionnaire was 6.8 (±1.4) of 10 correct answers. Knowledge in palliative care was associated with exposure to oncologic patients (P = .01) and previous palliative care education (P = .02) but inversely related to the pediatrician’s age (P = .01). Comfort addressing patient’s palliative care needs was associated with knowledge in palliative care (P < .01), exposure to oncologic patients (P = .03), and previous education in palliative care (P = .02).

Although Mexican pediatricians have basic knowledge of palliative care concepts, they do not feel comfortable addressing palliative care needs, suggesting that the main barrier for implementing palliative care is not the lack of knowledge but rather feeling uncomfortable when addressing these issues with patients and families. Educational programs should incorporate strategies that could help physicians develop comfort in approaching palliative care patients.

The objective of this scoping review is to identify and map the global literature on death, dying, and end-of-life experiences among refugees. The study aims at identifying gaps in the literature produced on the topic and informs areas for future research in the field.

We included articles that met the following inclusion criteria: (1) Population: Refugees and/or internally or externally displaced individuals due to wars, conflicts, nonnatural disasters, or emergencies; (2) Setting: End-of-life phase, dying, and death that took place following the refuge or displacement and reported after the year 1980; and (3) Study Design: All types of studies including but not limited to primary studies, narrative reviews, systematic reviews, news, editorials, commentaries, opinion pieces, technical reports, and policy briefs. A systematic search of the following electronic databases: Medline, Scopus, CINAHL, and JSTOR yielded 11 153 records. The search of the United Nations High Commissioner for Refugees database Refworld retrieved an additional 7510 records.

Seven articles met our inclusion criteria. All articles were coauthored by scholars in universities/research institutes in high-income countries, and except for one, all were conducted in the country of the final settlement of refugees. One article adopted a qualitative approach, another article adopted a mixed-methods approach, one was a narrative review, and 4 articles were reviews of the literature. Three articles discussed access to medical/palliative care among older refugees, and 3 others addressed bereavement and death arrangements. Moreover, one article examined how transmigration and previous experiences from 2 cultural settings in home countries affect the contemplation of death and dying.

Research on end-of-life experiences among refugees is sorely lacking. This study raises awareness of the need for empirical data on end-of-life challenges and palliative care among refugees, thus equipping humanitarian agencies with a more explicit and culturally sensitive lens targeting those with life-limiting conditions.