Primary-level palliative care national capacity: Pallium Canada.

The need to improve access to palliative care across many settings of care for patients with cancer and non-cancer illnesses is recognised. This requires primary-level palliative care capacity, but many healthcare professionals lack core competencies in this area. Pallium Canada, a non-profit organisation, has been building primary-level palliative care at a national level since 2000, largely through its Learning Essential Approaches to Palliative Care (LEAP) education programme and its compassionate communities efforts. From 2015 to 2019, 1603 LEAP course sessions were delivered across Canada, reaching 28 123 learners from different professions, including nurses, physicians, social workers and pharmacists. This paper describes the factors that have accelerated and impeded spread and scale-up of these programmes. The need for partnerships with local, provincial and federal governments and organisations is highlighted. A social enterprise model, that involves diversifying sources of revenue to augment government funding, enhances long-term sustainability. Barriers have included Canada's geopolitical realities, including large geographical area and thirteen different healthcare systems. Some of the lessons learned and strategies that have evolved are potentially transferrable to other jurisdictions.

Reflecting on Palliative Care Integration in Canada: A Qualitative Report.

Studies have identified integrated interdisciplinary care as a hallmark of effective palliative care. Although models attempt to show how integration may function, there is little literature available that practically explores how integration is fostered and maintained. In this study we asked palliative care clinicians across Canada to comment on how services are integrated across the healthcare system. This is an analysis of qualitative data from a larger study, wherein clinicians provided written responses regarding their experiences. Content analysis was used to identify response categories. Clinicians (n = 14) included physicians, a nurse and a social worker from six provinces. They identified the benefits of formalized relationships and collaboration pathways with other services to streamline referral and consultation. Clinicians perceived a need for better training of residents and primary care physicians in the community and more acceptance, shared understanding, and referrals. Clinicians also described integrating well with oncology departments. Lastly, clinicians considered integration a complex process with departmental, provincial, and national involvement. The needs and strengths identified by the clinicians mirror the qualities of successfully integrated palliative care programs globally and highlight specific areas in policy, education, practice, and research that could benefit those in Canada.

Missing in Action: Reports of Interdisciplinary Integration in Canadian Palliative Care.

Palliative care has an interdisciplinary tradition and Canada is a leader in its research and practice. Yet even in Canada, a full interdisciplinary complement is often lacking, with psychosocial presence ranging from 0-67.4% depending on the discipline and region. We sought to examine the most notable gaps in care from the perspective of Canadian palliative professionals. Canadian directors of palliative care programs were surveyed with respect to interdisciplinary integration. Participants responded in writing or by phone interview. We operationalized reports of interdisciplinary professions as either "present" or "under/not-represented". The Vaismoradi, Turunen, and Bondas' procedure was used for content analysis. Our 14 participants consisted of physicians (85.7%), nurses (14.3%), and a social worker (7.1%) from Ontario (35.7%), British Columbia (14.3%), Alberta (14.3%), Quebec (14.3%), Nova Scotia (14.3%), and New Brunswick (7.1%). Psychology and social work were equally and most frequently reported as "under/not represented" (5/14, each). All participants reported the presence of medical professionals (physicians and nurses) and these groups were not reported as under/not represented. Spiritual care and others (e.g., rehabilitation and volunteers) were infrequently reported as "under/not represented". Qualitative themes included Commonly Represented Disciplines, Quality of Multidisciplinary Collaboration, Commonly Under-Represented Disciplines, and Special Concern: Psychosocial Care. Similar to previous reports, we found that (1) psychology was under-represented yet highly valued and (2) despite social work's relative high presence in care, our participants reported a higher need for more. These finding highlight those psychosocial gaps in care are most frequently noted by palliative care professionals, especially psychology and social work. We speculate on barriers and enablers to addressing this need.

Gaps in Hospice and Palliative Care Research: A Scoping Review of the North American Literature.

BACKGROUND: The demand for hospice and palliative care is growing as a result of the increase of an aging population, which is most prominent in North America. Despite the importance of the topic and an increase in hospice and palliative care utilization, there still are gaps in research and evidence within the field. AIM: To determine what gaps currently exist in hospice and palliative/end-of-life care research within the context of a North American setting to ensure that future directions are grounded in appropriate evidence. METHODS: Using Arksey and O'Malley's scoping review framework, six peer-reviewed, and four grey electronic literature databases in healthcare and the social sciences were searched in mid-2019. 111 full-text articles were retrieved, with 25 articles and reports meeting the inclusion criteria. Major themes were identified through thematic context analysis: (1) clinical, (2) system access to care, (3) research methodology, and (4) caregiving-related research gaps. RESULTS: Findings include strategies for engaging stakeholder organizations and funding agencies, implications for other stakeholder groups such as clinicians and researchers, and highlight implications for policy (e.g., national framework discussion) and practice (e.g., healthcare provider education and training and public awareness). CONCLUSION: Reviewing and addressing targeted research gaps is essential to inform future directions in Canada and beyond.

Pallium Canada's Curriculum Development Model: A Framework to Support Large-Scale Courseware Development and Deployment.

The need to improve access to palliative care across multiple settings and disease groups has been identified. This requires equipping health care professionals from many different professions, including physicians and nurses, among others, with basic palliative care competencies to provide a palliative care approach. Pallium Canada's Curriculum Development Framework supports the development, deployment, and dissemination, on a large scale, of multiple courses targeting health care professionals across multiple settings of care and disease groups. The Framework is made up of eight phases: (1) Concept, (2) Decision, (3) Curriculum Planning, (4) Prototype Development, (5) Piloting, (6) Dissemination, (7) Language and Cultural Adaptation, and (8) Ongoing Maintenance and Updates. Several of these phases include iterative cyclical activities. The framework allows multiple courses to be developed simultaneously, staggered in a production line with each phase and their corresponding activities requiring different levels of resources and stakeholder engagement. The framework has allowed Pallium Canada to develop, launch, and maintain numerous versions of its Learning Essential Approaches to Palliative Care (LEAP) courses concurrently. It leverages existing LEAP courses and curriculum materials to produce new LEAP courses, allowing significant efficiencies and maximizing output. This article describes the framework and its various activities, which we believe could be very useful for other jurisdictions undertaking the work of developing education programs to spread the palliative care approach across multiple settings, specialties, and disease groups.

Ultralow-Dose Adjunctive Methadone with Slow Titration, Considering Long Half-Life, for Outpatients with Cancer-Related Pain.

Background: The unique properties of methadone make it attractive for use in cancer pain. The use of very low initial doses of adjunctive methadone is a promising strategy given its simplicity and potentially reduced risk profile. Objective: To understand if an ultralow-dose (ULD) methadone protocol (1 mg by mouth daily initial dose with gradual titration) can improve pain control in outpatients with cancer-related pain not responsive to previous opioids and/or nonopioid analgesics. We also sought to assess if the use of ULD methadone resulted in improvement in mood and sleep among other outcomes. Design and Setting/Subjects: This study is a retrospective chart review of outpatients at the cancer pain clinic at the Tom Baker Cancer Centre in Calgary, Alberta, Canada. Measurements: The mean ratings in maximum and average pain before methadone initiation, and at the final follow-up point are reported. Paired sample t tests evaluate for statistically significant differences in pain ratings before methadone initiation and at final follow-up. We also report the proportion of participants with a subjective improvement in pain, sleep, and mood (dichotomous "yes/no"), and the mean number of weeks to initial documented pain improvement. Results: 68.6% of patients (24/34) reported a subjective improvement in pain. Most patients reported improved sleep and mood (78.8% and 64.7%, respectively). Conclusions: More than two-thirds of patients reported an improvement in pain with a protocol using very low initial doses of adjunctive methadone. Our report is a preliminary retrospective chart review and larger prospective trials are warranted.

The Development and Validation of Updated Palliative and End-of-Life Care Competencies for Medical Undergraduates in Canada.

In 2008, a Canadian strategy called the "Educating Future Physicians in Palliative and End-of-Life Care" (EFPPEC) project published national medical undergraduate competencies for palliative and end-of-life care. Since that time, there have been several changes in the practice environment. To formally incorporate these changes and also update the competencies for EFPPEC, an EFPPEC update project team was established in 2017. The EFPPEC update document in English was finalized in June 2018, and subsequent minor amendments to the French version were completed in January 2019. This report describes the process and also shares the new updated EFPPEC competencies with the wider palliative care community.

Outcomes From a Patient-Centered, Interprofessional, Palliative Consult Team in Oncology.

Background: Palliative care aims to improve suffering and quality of life for patients with life-limiting disease. This study evaluated an interdisciplinary palliative consultation team for outpatients with advanced cancer at the Tom Baker Cancer Centre. This team traditionally offered palliative medicine and recently integrated a specialized psychosocial clinician. Historic patient-reported clinical outcomes were reviewed. There were no a priori hypotheses. Methods: A total of 180 chart reviews were performed in 8 sample months in 2015 and 2016; 114 patients were included. All patients were referred for management of complex cancer symptomatology by oncology or palliative care clinicians. Patients attended initial interviews in person; palliative medicine follow-ups were largely performed by telephone, and psychosocial appointments were conducted in person for those who were interested and had psychosocial concerns. Chart review included collection of demographics, medical information, and screening for distress measures at referral, initial consult, and discharge. Results: A total of 51% of the patient sample were men, 81% were living with a partner, and 87% had an advanced cancer diagnosis. Patients were grouped based on high, moderate, or low scores for 5 symptoms (pain, fatigue, depression, anxiety, and well-being). High scores on all 5 symptoms decreased from referral to discharge. Pain and anxiety decreased in the moderate group. All 5 low scores increased significantly. Sleep, frustration/anger, sense of burdening others, and sensitivity to cold were less frequently endorsed by discharge. Conclusions: Patients who completed this interdisciplinary palliative consult service appeared to experience a reduction in their most severe symptoms. Visits to patients during existing appointments or having them attend a half-day clinic appears to have reached those referred. With interdisciplinary integration, clinicians are able to collaborate to address patient care needs. Considerations include how to further integrate palliative and psychosocial care to achieve additional benefits and ongoing monitoring of changes in symptom burden.

Methadone for Pain Management: Past, Present and Future.

Methadone for pain management in this article describes briefly pain, methadone as a Level 3 World Health Organization ladder opioid in the context of India and rest of the world, as well as the relationship to past, present, and future possibilities of pain management. Acute pain is proportional to the injury most of the times, and such proportionality may not exist in chronic pain. Pain management over decades has changed because of knowledge and availability of molecules and compounds to reduce chronic pain. Naturally occurring opioids from "poppy" such as morphine and heroin were available through cultivation and trade for pain management and recreational use in different parts of the world for centuries. Methadone has been a synthetic molecule discovered in the 1930s in Germany. It has been used for harm reduction for opioid use disorder in the form of "methadone maintenance treatment". This program exists since the 1950s while pain management started around the late 1970s in Europe and North America. More recently, the knowledge of acute and chronic pain at a molecular level, including ion channel modification, allowed the use of coanalgesics and opioids prudently. The concept of "total pain, neuroplasticity, and neurotransmitters" how they could be modified for better pain management with pharmaceuticals and nonpharmacological methods are being investigated, and evidence is being practiced clinically. In the present context, education for physicians, allied health professionals, patients, and family caregivers is important. Education to the physicians can skill and capacity build in the community and can be associated with educational research and peer-reviewed publications. The future remains promising, as innovations such as pharmacogenomics, nanotechnology, molecular, and quantum biology may create evidence, along with physical and psychological rehabilitation, to prevent and holistically better pain management.

When to Use Methadone for pain: A Case-Based Approach.

The case studies are written in this article to illustrate how methadone might be used for pain in the Indian context. These cases might be used for discussion in a multidisciplinary team, or for individual study. It is important to understand that pain requires a multidisciplinary approach as opioids will assist only with physical, i.e. neuropathic and nociceptive pain, but not emotional, spiritual, or relational pain or the pain of immobility. The social determinants of pain were included to demonstrate how emotional, relational, and psychological dimensions of pain amplify the physical aspects of pain. The case studies follow a practical step-wise approach to pain while undergoing cancer treatment, pain toward the end-of-life and needing longer acting opioid. Methadone in children, and methadone in conditions of opioid toxicity or where there is a need for absorption in the proximal intestine cases are included.

Challenges of Using Methadone in the Indian Pain and Palliative Care Practice.

Palliative care providers across India lobbied to gain access to methadone for pain relief and this has finally been achieved. Palliative care activists will count on the numerous strengths for introducing methadone in India, including the various national and state government initiatives that have been introduced recognizing the importance of palliative care as a specialty in addition to improving opioid accessibility and training. Adding to the support are the Non-Governmental Organizations (NGOs), the medical fraternity and the international interactive and innovative programs such as the Project Extension for Community Health Outcome. As compelling as the need for methadone is, many challenges await. This article outlines the challenges of procuring methadone and also discusses the challenges specific to methadone. Balancing the availability and diversion in a setting of opioid phobia, implementing the amended laws to improve availability and accessibility in a country with diverse health-care practices are the major challenges in implementing methadone for relief of pain. The unique pharmacology of the drug requires meticulous patient selection, vigilant monitoring, and excellent communication and collaboration with a multidisciplinary team and caregivers. The psychological acceptance of the patient, the professional training of the team and the place where care is provided are also challenges which need to be overcome. These challenges could well be the catalyst for a more diligent and vigilant approach to opioid prescribing practices. Start low, go slow could well be the way forward with caregiver education to prescribe methadone safely in the Indian palliative care setting.

Practical Guide for Using Methadone in Pain and Palliative Care Practice.

Since the 2014 Amendment to the NDPS Act methadone has been released in India for pain management. The methadone is supplied as racemic mixture with R & S methadone with benefit in pain management and associated adverse effects. Physicians need to be aware of adverse effects so that methadone can be administered safely. Similarly, patients and families need to store and use methadone carefully and experience the benefits and not increase the risk of further morbidity. Considerable amount of literature on methadone is available and sometimes conflicting, hence the article is attempting to guide a physician to use methadone safely to acquire experience and expertise over time.

Mental disorders and the desire for death in patients receiving palliative care for cancer.

OBJECTIVES: The desire for death in terminally ill patients is associated with depression and anxiety, but not all patients who report it meet criteria for mental disorders. We examined the characteristics of subgroups of palliative cancer patients who expressed a desire for death that occurred either with or without a concurrent depressive or anxiety disorder. DESIGN: Cross-sectional survey. SETTING: Eight Canadian palliative care programs. PARTICIPANTS: 377 patients with cancer. MAIN OUTCOME MEASURES: Desire for Death Rating Scale; Structured Interview of Symptoms and Concerns. RESULTS: Most participants (69.5%) had no desire for death. Of the remainder, 69 (18.3%) acknowledged occasional transient thoughts, and 46 (12.2%) reported an apparently genuine desire to die. In the latter group, 24 individuals (52.2%) were diagnosed with a mental disorder and 22 (44.8%) were not. Individuals with no serious desire for death and no mental disorder reported the least distress in physical, social, existential, and psychological symptoms and concerns; those with a mental disorder and a significant desire for death reported the most. The subgroup of patients with a serious desire for death but no concurrent mental disorders still reported increased distress due to physical symptoms and social concerns, as well as a higher prevalence of global suffering. CONCLUSIONS: The expression of a desire for death by a terminally ill patient should raise a suspicion about mental health problems, but is not in itself clearly indicative of one. Nevertheless, it may serve as a catalyst to review the individual's physical symptom management and interpersonal concerns, and overall sense of suffering.

Prognostic acceptance and the well-being of patients receiving palliative care for cancer.

PURPOSE: To identify the impact of prognostic acceptance/nonacceptance on the physical, psychological, and existential well-being of patients with advanced cancer. PATIENTS AND METHODS: A Canadian multicenter prospective national survey was conducted of patients diagnosed with advanced cancer with an estimated survival duration of 6 months or less (n = 381) receiving palliative care services. RESULTS: Of the total number of participants, 74% reported accepting their situation and 8.6% reported accepting with "moderate" to "extreme" difficulty. More participants with acceptance difficulties than without acceptance difficulties met diagnostic criteria for a depressive or anxiety disorder (chi(2) = 8.67; P < .01). Nonacceptors were younger (t = 4.13; P < .000), had more than high school education (chi(2) = 4.69; P < .05), and had smaller social networks (t = 2.53; P < .05) than Acceptors. Of the Nonacceptors, 42% described their experience as one of "moderate" to "extreme" suffering compared with 24.1% of Acceptors (chi(2) = 5.28; P < .05). More than one third (37.5%) of Nonacceptors reported feeling hopeless compared with 8.6% who had no difficulty accepting (chi(2) = 24.76; P < .000). Qualitatively, participants described active and passive coping strategies that helped them accept what was happening to them, as well as barriers that made it difficult to come to terms with their current situation. CONCLUSION: The challenge of coming to terms with a terminal prognosis is a complex interplay between one's basic personality, the availability of social support, and one's spiritual and existential views on life. Nonacceptance appears to be highly associated with feelings of hopelessness, a sense of suffering, depression, and anxiety, along with difficulties in terms of social-relational concerns.

Prevalence and correlates of pain in the Canadian National Palliative Care Survey.

BACKGROUND: Pain is a common problem for people with cancer who are nearing the ends of their lives. OBJECTIVE: In the present multicentre Canadian study of palliative cancer care, the prevalence of pain, its perceived severity and its correlates across a range of physical, social, psychological, and existential symptoms and concerns were examined. METHODS: Semistructured interviews were conducted with 381 patients. In addition to inquiring about pain, the interview also assessed 21 other symptoms and concerns, and collected information about demographic characteristics, functional status and medication use. RESULTS: Pain of any intensity was reported by 268 (70.3%) participants, although for 139 (36.5%), the severity was rated as minimal or mild. For 129 (33.9%) individuals, pain was reported as moderate to extreme, and considered by the respondents to be an important ongoing problem. Patients who reported moderate to extreme pain were younger than other participants, but had lower functional status and a shorter median survival duration. They were more likely than other participants to be treated with opioid medications (P<0.001) and, less reliably, with benzodiazepines (P=0.079). Compared with participants with no, minimal or mild pain, those with moderate to extreme pain had a higher prevalence of distressing problems on 11 of 21 other symptoms and concerns. The strongest correlations were with general malaise (rho = 0.44), suffering (rho = 0.40), nausea (rho = 0.34), weakness (rho = 0.31), drowsiness (rho = 0.29) and anxiety (rho = 0.29). CONCLUSIONS: Pain continues to be a difficult problem for many patients who are receiving palliative cancer care, particularly younger individuals who are nearing death.

An open-label, multi-dose efficacy and safety study of intramuscular tetrodotoxin in patients with severe cancer-related pain.

Cancer pain is a prevalent and serious public health issue, and more effective treatments are needed. This study evaluates the analgesic activity of tetrodotoxin, a highly selective sodium channel blocker, in cancer pain. A Phase IIa, open-label, multicenter, dose-escalation study of intramuscular tetrodotoxin was conducted in patients with severe, unrelieved cancer pain. The study design called for six ascending dose levels of intramuscular tetrodotoxin, administered over a four-day treatment period in hospitalized patients, with six patients to be enrolled within each successive dose level. Twenty-four patients underwent 31 courses of treatment at doses ranging from 15 to 90 microg daily, administered in divided doses, over four days. Most patients described transient perioral tingling or other mild sensory phenomena within about an hour of each treatment. Nausea and other toxicities were generally mild, but two patients experienced a serious adverse event, truncal and gait ataxia, that resolved over days. Seventeen of 31 treatments resulted in clinically meaningful reductions in pain intensity, and relief of pain persisted for up to two weeks or longer. Two patients had opioids held due to narcosis concurrent with relief of pain. Somatic, visceral, or neuropathic pain could all respond, but it was not possible to predict which patients were more likely to have an analgesic effect. Tetrodotoxin was overall safe. It effectively relieved severe, treatment-resistant cancer pain in the majority of patients and often for prolonged periods after treatment. It may have a novel mechanism of analgesic effect. Further study is warranted.

Suffering with advanced cancer.

PURPOSE: The alleviation of suffering is a central goal of palliative care, but little research has addressed the construct of suffering as a global experience of the whole person. We inquired into the sense of suffering among patients with advanced cancer to investigate its causes and correlates. PATIENTS AND METHODS: Semistructured interviews were administered to 381 patients. The interviews inquired about physical symptoms, social concerns, psychological problems, and existential issues. We also asked, "In an overall, general sense, do you feel that you are suffering?" RESULTS: Almost half (49.3%) of respondents did not consider themselves to be suffering, and 24.9% felt that they suffered only mildly. However, 98 participants (25.7%) were suffering at a moderate-to-extreme level. The latter participants were more likely to experience significant distress on 20 of the 21 items addressing symptoms and concerns; the highest correlations were with general malaise (rho [rho]= 0.56), weakness ( = 0.42), pain ( = 0.40), and depression ( = .39). In regression analyses, physical symptoms, psychological distress, and existential concerns, but not social issues, contributed to the prediction of suffering. In qualitative narratives, physical problems accounted for approximately half (49.5%) of patient reports of suffering, with psychological, existential, and social concerns accounting for 14.0%, 17.7%, and 18.8%, respectively. CONCLUSION: Many patients with advanced cancer do not consider themselves to be suffering. For those who do, suffering is a multidimensional experience related most strongly to physical symptoms, but with contributions from psychological distress, existential concerns, and social-relational worries.

Desire for euthanasia or physician-assisted suicide in palliative cancer care.

OBJECTIVE: To investigate the attitudes of terminally ill individuals toward the legalization of euthanasia or physician-assisted suicide (PAS) and to identify those who would personally desire such a death. DESIGN: In the Canadian National Palliative Care Survey, semistructured interviews were administered to 379 patients who were receiving palliative care for cancer. Patients who expressed a desire for physician-hastened death were followed prospectively. MAIN OUTCOME MEASURES: Attitudes toward the legalization of euthanasia or PAS were determined, as was the personal interest in receiving a hastened death. Demographic and clinical characteristics were also recorded, including a 22-item structured interview of symptoms and concerns. RESULTS: There were 238 participants (62.8%) who believed that euthanasia and/or PAS should be legalized, and 151 (39.8%) who would consider making a future request for a physician-hastened death. However, only 22 (5.8%) reported that, if legally permissible, they would initiate such a request right away, in their current situations. This desire for hastened death was associated with lower religiosity (p=.010), reduced functional status (p=.024), a diagnosis of major depression (p<.001), and greater distress on 12 of 22 individual symptoms and concerns (p<.025). In follow-up interviews with 17 participants, 2 (11.8%) showed instability in their expressed desire. CONCLUSION: Among patients receiving palliative care for cancer, the desire to receive euthanasia or PAS is associated with religious beliefs; functional status; and physical, social, and psychological symptoms and concerns. Although this desire is sometimes transitory, once firmly established, it can be enduring.

Depression and anxiety disorders in palliative cancer care.

Depression and anxiety disorders are thought to be common in palliative cancer care, but there is inconsistent evidence regarding their relevance for other aspects of quality of life. In the Canadian National Palliative Care Survey, semi-structured interviews assessing depression and anxiety disorders were administered to 381 patients who were receiving palliative care for cancer. There were 212 women and 169 men, with a median survival of 63 days. We found that 93 participants (24.4%, 95% confidence interval=20.2-29.0) fulfilled Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition diagnostic criteria for at least one anxiety or depressive disorder (20.7% prevalence of depressive disorders, 13.9% prevalence of anxiety disorders). The most frequent individual diagnosis was major depression (13.1%, 95% confidence interval=9.9-16.9). Comorbidity was common, with 10.2% of participants meeting criteria for more than one disorder. Those diagnosed with a disorder were significantly younger than other participants (P=0.002). They also had lower performance status (P=0.017), smaller social networks (P=0.008), and less participation in organized religious services (P=0.007). In addition, they reported more severe distress on 14 of 18 physical symptoms, social concerns, and existential issues. Of those with a disorder, 39.8% were being treated with antidepressant medication, and 66.7% had been prescribed a benzodiazepine. In conclusion, it appears that depression and anxiety disorders are indeed common among patients receiving palliative care. These disorders contribute to a greatly diminished quality of life among people who are dying of cancer.