The specialist palliative care team as a local resource.

Background: Specialist-level palliative care support is intended for patients with complex physical and psychosocial needs. In addition to direct clinical care, specialist teams can be utilized to support the delivery of community-based palliative care by providing 24/7 access to advice and support for primary care providers, patients, and their families. Aim: This paper describes how a specialist palliative care team, based in a tertiary level hospital, can provide timely access to palliative care for patients in a surrounding sub-region that has historically lacked a robust network of community-based palliative care supports. Design: A retrospective database analysis was conducted from January 1 - December 31, 2019, to describe the demographic and clinical characteristics of patients referred to the Palliative Care Consult Team who reside in the sub-region of Scarborough, Ontario. Data were reviewed to highlight the role the team plays in supporting end-of-life care for this community of patients, families, and providers. Patients referred to the Palliative Care Consult Team with a residential address within the sub-region of interest were the focus. Results: In total, 343 patients living in the selected sub-region were seen by the Palliative Care Consult Team during a 12-month period, representing 18% of the team's annual clinical volume. The majority of these patients (94%) had a cancer diagnosis. Median Palliative Performance Scale score at time of initial consult was 40 for inpatients and 60 for ambulatory patients. More than half the patients (56%) were "full code" at the time of initial palliative care consultation. Median survival from initial consult to death was 18 days for inpatients and 68 days for ambulatory patients. More than half of the patients (54%) died in a palliative care unit, with a smaller percentage dying in the home setting (7%). Conclusions: Our report highlights the utilization of a database as a quality improvement tool to illustrate our institution's palliative care mission and vision of engaging in the provision of palliative care expertise to community-based patients and healthcare colleagues.

The effect of end-of-life decision-making tools on patient and family-related outcomes of care among ethnocultural minorities: A systematic review.

BACKGROUND: End-of-life decision-making tools are used to establish a shared understanding among patients, families and healthcare providers about medical treatment and goals of care. This systematic review aimed to understand the availability and effect of end-of-life decision-making tools on: (i) goals of care and advance care planning; (ii) patient and/or family satisfaction and well-being; and (iii) healthcare utilization among racial/ethnic, cultural, and religious minorities. METHODS: A search was conducted in four electronic databases (inception to June 2021). Articles were screened for eligibility using pre-specified criteria. We focused on adult patients (aged ≥18 years) and included primary research articles that used quantitative, qualitative, and mixed-methods designs. Complementary quality assessment tools were used to generate quality scores for individual studies. Extracted data were synthesized by outcome measure for each type of tool, and an overall description of findings showed the range of effects. RESULTS: Among 14,316 retrieved articles, 37 articles were eligible. We found that advance care planning programs (eleven studies), healthcare provider-led interventions (four studies), and linguistically-tailored decision aids (three studies) increased the proportion of patients documenting advance care plans. Educational tools (three studies) strongly reduced patient preferences for life-prolonging care. Palliative care consultations (three studies) were strongly associated with do-not-resuscitate orders. Advance care planning programs (three studies) significantly influenced the quality of patient-clinician communication and healthcare provider-led interventions (two studies) significantly influenced perceived patient quality of life. CONCLUSION: This review identified several end-of-life decision-making tools with impact on patient and family-related outcomes of care among ethnocultural minorities. Advance care planning programs, healthcare provider-led interventions and decision aids increased documentation of end-of-life care plans and do-not-resuscitate orders, and educational tools reduced preferences for life-prolonging care. Further research is needed to investigate the effect of tools on healthcare utilization, and with specific patient population subgroups across different illness trajectories and healthcare settings.

Quality improvement of the end of life care experience through bereavement calls made by spiritual care.

Improving the end of life care experience of people dying in acute care has become a priority for our organization since 2016 with the launch of the "Quality Living and Dying Initiative." This initiative has three distinct foci. The first two areas of focus, advance care planning and standardized comfort measures, are well established while the third focus bereavement program remains in its early stages. Bereavement is recognized as an essential component along the continuum of palliative care. Despite this recognition, bereavement care is often lacking in hospital settings. This paper will describe a telephone bereavement initiative spearheaded by the Spiritual Care Team at our organization.

Spiritual Care as Part of an Interprofessional Model for Debriefing on an Oncology Unit.

Health care clinicians who care for seriously ill and dying patients have been known to be at higher risk for burnout and moral distress. When not well supported in their workplace, clinicians may suffer additional adverse outcomes to their overall wellbeing. Self-care is one way to help mitigate these adverse outcomes. The literature has described formalized debriefing not only as a self-care strategy but an intervention to promote healthy team development. The focus of this paper will showcase how social work and spiritual care practitioners in our institution worked collaboratively to support an inpatient oncology unit to address issues related to burnout by providing staff with monthly debriefing sessions intended to enhance self-care and wellness in the workplace.

Evaluating satisfaction with the quality and provision of end-of-life care for patients from diverse ethnocultural backgrounds.

BACKGROUND: Recently immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients. To explore this finding further, this survey-based observational study aimed to evaluate satisfaction with the quality of end-of-life care for patients from diverse ethnocultural backgrounds. METHODS: The End-of-Life Satisfaction Survey was used to measure satisfaction with the quality of inpatient end-of-life care from the perspective of next-of-kin of recently deceased patients at Sunnybrook Health Sciences Centre in Toronto, Ontario (between March 2012 to May 2019). The primary outcome was the global rating of satisfaction. Associations with patient ethnicity, patient religion, level of religiosity/spirituality, language/communication barriers, and location of death were assessed using univariable and multivariable modified Poisson regression. Secondary outcomes included differences in satisfaction and rates of dying in intensive care units (ICU) among patient population subgroups, and identification of high priority areas for quality-of-care improvement. RESULTS: There were 1,543 respondents. Patient ethnicities included Caucasian (68.2%), Mediterranean (10.5%), East Asian (7.6%), South Asian (3.5%), Southeast Asian (2.1%) and Middle Eastern (2.0%); religious affiliations included Christianity (66.6%), Judaism (12.3%) and Islam (2.1%), among others. Location of death was most commonly in ICU (38.4%), hospital wards (37.0%) or long-term care (20.0%). The mean(SD) rating of satisfaction score was 8.30(2.09) of 10. After adjusting for other covariates, satisfaction with quality of end-of-life care was higher among patients dying in ICU versus other locations (relative risk [RR] 1.51, 95%CI 1.05-2.19, p=0.028), lower among those who experienced language/communication barriers (RR 0.49 95%CI 0.23-1.06, p=0.069), and lower for Muslim patients versus other religious affiliations (RR 0.46, 95%CI 0.21-1.02, p=0.056). Survey items identified as highest priority areas for quality-of-care improvement included communication and information giving; illness management; and healthcare provider characteristics such as emotional support, doctor availability and time spent with patient/family. CONCLUSION: Satisfaction with quality-of-care at the end of life was higher among patients dying in ICU and lower among Muslim patients or when there were communication barriers between families and healthcare providers. These findings highlight the importance of measuring and improving end-of-life care across the ethnocultural spectrum.

Inpatient Palliative Care Consult: A Marker for High Risk of Readmission or Death in Discharged Oncology Inpatients.

BACKGROUND: Emergency department visits or readmission to hospital are common particularly among those with advanced illness. Little prospective data exist on early outcomes specifically for patients seen by a palliative care consult service during their acute care admission, who are subsequently discharged home. METHODS: This study followed 62 oncology patients who had had a palliative care consult during their admission to acute care with weekly phone calls postdischarge for 4 weeks. Events recorded included death, readmission, emergency department visits, and admission to a palliative care unit. RESULTS: By the end of the study, 32 (52%) of 62 had had at least 1 event, (readmission, emergency department visit, or death), with the majority of these occurring in the first 2 weeks postdischarge. The overall 4-week death rate was 14 (22.6%) of 62. CONCLUSIONS: These data suggest that the need for a palliative care consult identifies inpatients at very high risk for early deterioration and underlines the critical importance of advance care planning/goals-of-care discussions by the oncology and palliative care teams to ensure patients and families understand their disease process and have the opportunity to direct their care decisions.

Development, implementation and evaluation of a pain management and palliative care educational seminar for medical students.

BACKGROUND: Despite calls for the development and evaluation of pain education programs during early medical student training, little research has been dedicated to this initiative. OBJECTIVES: To develop a pain management and palliative care seminar for medical students during their surgical clerkship and evaluate its impact on knowledge over time. METHODS: A multidisciplinary team of palliative care and pain experts worked collaboratively and developed the seminar over one year. Teaching methods included didactic and case-based instruction, as well as small and large group discussions. A total of 292 medical students attended a seminar during their third- or fourth-year surgical rotation. A 10-item test on knowledge regarding pain and palliative care topics was administered before the seminar, immediately following the seminar and up to one year following the seminar. Ninety-five percent (n=277) of students completed the post-test and 31% (n=90) completed the follow-up test. RESULTS: The mean pretest, post-test and one-year follow-up test scores were 51%, 75% and 73%, respectively. Mean test scores at post-test and follow-up were significantly higher than pretest scores (all P<0.001). No significant difference was observed in mean test scores between follow-up and post-test (P=0.559), indicating that students retained knowledge gained from the seminar. CONCLUSIONS: A high-quality educational seminar using interactive and case-based instruction can enhance students' knowledge of pain management and palliative care. These findings highlight the feasibility of developing and implementing pain education material for medical students during their training.

What is symptom burden: a qualitative exploration of patient definitions.

Current definitions of "symptom burden" are largely derived from clinicians, and there are many variations in the way the term is used, defined, and operationalized. The aim of this study was to explore patient perceptions of symptom burden in the context of advanced and incurable disease. A group of 58 cancer patients followed by a palliative care team answered a single open-ended question: "Please define 'symptom burden'". Three authors independently coded and analyzed patient responses using a grounded theory approach. They identified six themes, the most frequently coded of which were: "can't do usual activities", "psychological suffering" and "specific severe symptoms". Our findings indicate that the concept of symptom burden is complex and extends beyond numerical symptom-scoring systems. In addition to inquiring about specific symptoms, it may be important to directly ask patients about their overall burden or experience of symptoms.

High scores on the Edmonton Symptom Assessment Scale identify patients with self-defined high symptom burden.

The terms symptom burden and symptom distress are frequently seen in palliative care literature yet are used in multiple ways ranging from addition of symptom scores to more in-depth assessments of interference in function. Patient input to date has had little role in these varied definitions yet previous reviews have suggested the importance of such input. This mixed qualitative and quantitative prospective study was conducted to seek patient input into the definition of 'symptom burden' and to correlate burden self-ranked scores with symptom scores on the Edmonton Symptom Assessment Scale (ESAS). Results suggest that patients with advanced disease followed by palliative care providers are a group with a high level of self-defined burden. Further, any patient rating one or more symptoms on the ESAS ≥7 is at high risk of self-defined burden and likely to be experiencing significant impact on physical, emotional and social functioning. Further work should look at which aspects of symptom management best promote a lessening of perceived burden.

Clinician accuracy when estimating survival duration: the role of the patient's performance status and time-based prognostic categories.

CONTEXT: Although shown to be an independent predictor of actual survival (AS) duration, previous reports have identified significant inaccuracy in clinician estimates of survival (CES). OBJECTIVES: This study aimed to both examine demographic and clinical factors potentially impacting CES accuracy and explore possible strategies for improvement in a patient population with advanced incurable disease. METHODS: At the time of initial assessment by a specialist palliative care team, CES for each patient was chosen from one of the following time-based categories: <24 hours, one to seven days, one to four weeks, one to three months, three to six months, three to 12 months, or >12 months. Survival estimates were then classified as an accurate (AS=CES), overestimate (ASCES). Demographic data were analyzed using descriptive statistics, and both univariate and stepwise multivariate logistic regression analyses were used to identify any associated demographic and/or clinical factors significantly impacting accuracy. RESULTS: Within the total study population of 1835, both CES and AS data were available for 1622 patients among whom mean and median survival was 26.5 and 88 days, respectively. The remaining 213 patients (12% of the total population) remained alive at the time of analysis. Of the total study population, CES was accurate for 34% of patients and an overestimate for 51% of patients. CES of <24 hours and one to seven days were significantly more likely to be accurate than any other prognostic category (P<0.0001). Additionally, a CES of either one to four weeks or >12 months was significantly more likely to be accurate than CES of one to three months, three to six months, and six to 12 months (P<0.0001). Finally, multivariate analyses indicated CES to be significantly more likely to be accurate for males (P=0.0407) and for patients with baseline Palliative Performance Scale (PPS) ratings of either "30 and less" (P<0.0001) or "70 and greater" (P<0.0001). CONCLUSION: In a patient population referred for specialist palliative care consultation with diverse diagnoses and a wide range of CES, time-based categorization of survival estimates along with PPS and possibly gender could be used to inform the CES process for individual patients. Intentionally incorporating these objective elements into what has historically been the subjective process of CES may lead to improvements in accuracy.

Malignant bowel obstruction: natural history of a heterogeneous patient population followed prospectively over two years.

CONTEXT: The management of malignant bowel obstruction (MBO) is often challenging and frequently involves multiple treatment modalities, including chemotherapy, surgery, stenting, and symptomatic medical management. OBJECTIVES: To describe the natural history of patients diagnosed with MBO who were admitted to a tertiary level hospital and followed by a multidisciplinary team that included medical oncologists, surgical oncologists, and palliative care specialists. METHODS: Thirty-five patients admitted under medical or surgical oncology with a diagnosis of MBO were followed over a two-year period or until the time of death. Primary malignancies included colon, rectum, pancreas, biliary, breast, bladder, carcinoid, renal cell, gastric, lung, and melanoma. Clinical outcomes of interest included survival, percentage of patients receiving surgery and/or chemotherapy, total parenteral nutrition (TPN), insertion of venting gastrostomy tube, disposition, and rates of readmission to hospital. RESULTS: Median survival was 80 days and three patients were alive at the time of study closure. At our center, 34% of patients underwent surgical intervention, 37% received at least one dose of post-MBO chemotherapy, and 43% received TPN. There was a cohort of patients (17%) who were alive at one year. CONCLUSION: Interventions such as chemotherapy and TPN may be appropriate in a carefully selected subgroup of patients. A collaborative approach is required for the optimal clinical management and palliation of MBO.

Joint pain in AML: successful pain control with radiotherapy.

We present a case supporting the use of radiation therapy for palliation of joint pain associated with acute myelogenous leukemia. Prior to radiation therapy to the affected joints, and despite standard pain management, this patient was entirely bedridden and in significant pain. Following radiation, she was able to participate in physiotherapy with minimal to no pain until her death several weeks later. A brief literature review of joint involvement in acute myelogenous leukemia is discussed.