Objectives: To explore pharmacists’ perspectives on practice, availability, and barriers related to opioids.
Methods: This cross-sectional study evaluated pharmacists’ perspectives on practice, availability, and barriers related to opioids. Electronic surveys were distributed to pharmacists practicing in Georgia via Survey Monkey. The 2 or Fisher Exact test was used to test differences in practice, availability, and barriers with respect to type of pharmacy and location of pharmacy.
Results: Most participating pharmacists practiced in an independent (47%) or community chain pharmacies (37%). The majority checked the Prescription Drug-Monitoring Program (PDMP) on a regular basis (73%), and about a third reported contacting the prescriber prior to dispensing. The most common barrier included concerns about diversion (82%) and illicit use (90%). About two-thirds reported experiencing a shortage of opioids. Significant differences (P < .05) were found between types of pharmacy in dispensing practices, availability, and barriers. No significant differences were found with respect to pharmacy location.
Conclusion: Findings suggest that pharmacists are facing challenges in availability of opioids and are employing stewardship approaches to optimize dispensing practices. This research provides insight regarding broken links in the “pain relief chain” and identifies opportunities to improve the accessibility of opioids when medically indicated. Pharmacists can play an important role in addressing the opioid crisis as well as providing quality care to patients with cancer seeking pain relief.
All cancer care must target the needs of the whole population, not just the few who reach curative services. This paper will refer to palliative care in Uganda and in the countries now aware of the need for palliative care. Human Rights Watch has declared that doctors who are aware that we can control cancer pain and are not doing it or taking steps to make it happen, are considered to be torturers (Human Rights Watch (2009) Please, do not make us suffer any more... Accessed 11 July 2019). As Uganda celebrates 25 years since the introduction of palliative care, is it now time to harvest the principles that have been applied in policies and services from the Government of Uganda? This has brought Uganda to the same level as the developed world as stage 4b palliative care (PC) services . These policies and services need to be promoted to caring governments in Africa, and suitably adapted to the needs of each African country, with a plan for them to progress over the next 5 years. These steps will ensure standards, economic viability and cultural appropriateness. Let palliative care reach at least 50% of cancer patients in need in Africa by 2023.
In this article, I argue that a holistic strategy is needed to ascertain how implicit bias, on the part of health-care providers, and structural impediments work together to produce significant barriers to access to medical assistance in dying for marginalized groups—particularly those experiencing intersecting or interlocking forms of identity-based oppressions. In doing so, I also make the case that this kind of primary, patient-centered, and institutional research could benefit from the insights of critical feminism and materialist feminist theory by highlighting and challenging inequalities, opening up debate, and exploring new forms of knowledge production. It also offers a way to shape future research of medical assistance in dying, as it relates specifically to the study of how overlapping forms of structural and interpersonal marginalization (e.g., implicit bias), inclusive of race, gender, class, ethnicity, dis/ability, sexuality, and so on are expressed and experienced.
Introduction: Palliative care is recommended for patients with life-limiting illnesses; however, there are few standardized protocols for outpatient palliative care visits. To address the paucity of data, this article aims to: (1) describe the elements of outpatient palliative care that are generalizable across clinical sites; (2) achieve consensus about standardized instruments used to assess domains within outpatient palliative care; and (3) develop a protocol and intervention checklist for palliative care clinicians to document outpatient visit elements that might not normally be recorded in the electronic heath record.
Methods: As part of a randomized control trial of nurse-led telephonic case management versus specialty, outpatient palliative care in older adults with serious life-limiting illnesses in the Emergency Department, we assessed the structural characteristics of outpatient care clinics across nine participating health care systems. In addition, direct observation of outpatient palliative care visits, consultation from content experts, and survey data were used to develop an outpatient palliative care protocol and intervention checklist.
Implementation: The protocol and checklist are being used to document the contents of each outpatient palliative care visit conducted as a part of the Emergency Medicine Palliative Care Access (EMPallA) trial. Variation across palliative care team staffing, clinic session capacity, and physical clinic model presents a challenge to standardizing the delivery of outpatient palliative care.
Introduction: Studies show that home-based palliative care (HBPC) improves participant outcomes and satisfaction with care while also decreasing hospitalizations and emergency department visits. U.S. health care payment reforms create financial opportunities to offer HBPC. Consequently, more HBPC programs are emerging, heightening the need to evaluate their effectiveness.
Methods: This randomized, controlled trial is comparing the effectiveness of an evidence-based model of HBPC and enhanced usual primary care for participants who receive primary care from medical groups and clinics organized under an accountable care organization or Medicare Advantage plan. Palliative care services are reimbursed by our partnering health plan provider. The five-year trial will enroll 1155 seriously ill participants (and ~884 of their caregivers) with heart failure, chronic obstructive pulmonary disease, or advanced cancer. We are collecting data via telephone surveys with participants at baseline and one and two months postenrollment and with caregivers at baseline, one and two months postenrollments, and following the death of a loved one. We are collecting participant-reported outcome measures of pain, symptoms, anxiety, depression, participant-provider communication, and hope. Caregiver outcome measures include caregiver burden, communication with providers, anxiety, and depression. Additional outcomes are participant survival time and participants' emergency department visits and hospitalizations.
Study Implementation: Challenges and Contributions: Our research team has encountered several significant challenges in early study implementation. These include engaging primary care providers in the study and coordinating logistics with a health plan. Both challenges have contributed to a lag in participant enrollment. Despite these challenges, our study holds tremendous promise to accelerate adoption and spread of an evidence-based HBPC model across the country.
Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology.
Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis.
Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and "the unspoken." Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital's infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.
There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative care services for CLHIV, especially for those living in rural areas. This paper highlights the need to scale up the provision of pediatric palliative care services for CLHIV in the country through the integration of palliative care into existing HIV care. This integration would not only increase the accessibility of palliative care for CLHIV, but also improve the quality of HIV care by addressing and meeting individual needs, enhancing retention in HIV care and improving quality of life amongst CLHIV. An effective integration of palliative care may be achieved by adopting World Health Organization’s Public Health Strategy for Palliative Care, with adaptations made to accommodate the unique geographical and cultural contexts of Indonesia.
Background: Despite the global consensus on the importance of palliative care for patients with multiple sclerosis (MS), many patients in developing countries do not receive palliative care. Improving access to palliative care for MS requires a contextual understanding of how palliative care is perceived by patients and health professionals, the existing care pathways, and barriers to the provision of palliative care.
Objective: This study aims to examine and contrast the perceptions of MS patients, neurologists, and palliative care physicians towards providing palliative care for patients with MS in Malaysia.
Methods: 2 MS patients, 5 neurologists, and 5 palliative care physicians participated in this qualitative study. Each participant took part in a semi-structured interview. The interviews were transcribed verbatim, and analysed using an iterative thematic analysis approach.
Results: Patients and neurologists mostly associated palliative care with the end-of-life and struggled to understand the need for palliative care in MS. Another barrier was the lack of understanding about the palliative care needs of MS patients. Palliative care physicians also identified the scarcity of resources and their lack of experience with MS as barriers. The current referral-based care pathway itself was found to be a barrier to the provision of palliative care.
Conclusions: MS patients in Malaysia face several barriers in accessing palliative care. Overcoming these barriers will require improving the shared understanding of palliative care and its role in MS. The existing care pathway also needs to be reformed to ensure that it improves access to palliative care for MS patients.
Aims: The cancer burden among Circumpolar Inuit is high. Palliative radiotherapy is a mainstay treatment for controlling symptoms of advanced cancers, but Inuit are required to travel far distances to access this service. Access to palliative radiotherapy and time away from home communities have not been explored among this population. We sought to describe the time intervals from symptom onset to the start of palliative radiotherapy among Canadian Inuit patients treated at The Ottawa Hospital (TOH).
Materials and methods: A retrospective review of Inuit patients from Nunavut treated with radiotherapy between 2005 and 2014 at TOH.
Results: Of a total of 152 radiotherapy patients, 88 (58%) were treated palliatively. Of these, 61 (70%) had stage IV disease at diagnosis and 63 (72%) had lung cancer. The median time from referral for specialist care to the patient's first flight to Ottawa was 4 days (range 0–97). The median length of treatment was 7 days (range 0–27), but patients spent a median of 64.5 days (range 14–633) in Ottawa. The median survival from the date of pathological diagnosis was 5.2 months.
Conclusions: Most Inuit radiotherapy patients at TOH were treated palliatively. Patients were brought from Nunavut relatively quickly for specialist care, which is encouraging. However, patients spent over 2 months away from home, in the context of a median survival of less than 6 months. Opportunities for improvement include both provider and system-level changes, which may be applicable to other Circumpolar Inuit regions across Europe and North America.
At the end of life, patients with cancer can continue to require intensive intervention to alleviate symptoms. When enrolled in hospice, however, they may find expensive treatment modalities, even those administered with palliative intent, inaccessible. This is because current reimbursement artificially divides the continuum of disease management into arbitrary phases of care: Medicare parts A, B and D for curative therapy and the Medicare Hospice Benefit for hospice care. The mechanism of reimbursement can disproportionately dictate availability and access to certain types of care. This is problematic because some treatment modalities (eg, diuretics for heart failure) can span both phases, and many palliative therapies have been empirically shown to improve quality of life and lengthen life. We use palliative radiotherapy as an example to illustrate some of the unintended consequences of this approach.
Upon receiving a cancer diagnosis, you immediately understand the gravity of the situation, and rightfully so, given that there are innumerable types, grades, and stages for which there is an entire gamut of outcomes. In your mind you have already begun creating an image of this cancer as a stain, a beast, a monster that you need to be rid of.
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PURPOSE: It has been shown that integrating palliative care (PC) in intensive care unit (ICU) improves end-of-life care (EOLC), but very few Canadian hospitals have adopted this practice. Our study aims to evaluate the perceived quality of EOLC at participating institutions and explore barriers toward ICU-PC integration.
MATERIALS AND METHODS: A self-administered questionnaire was developed by a multidisciplinary team. Survey items were extracted from published quality indicators in EOLC and barriers to ICU-PC integration. The study took place at 2 academic institutions. Participants consisted of physicians and nurses, ICU administrators, and allied health workers.
RESULTS: An overall response of 45% was achieved. Of total, 85% of the respondents were ICU nurses. The following main themes were identified: (1) There is a poor presence of PC in the ICU and 78% of respondents felt that increasing ICU-PC integration will improve quality of EOLC; (2) the main barrier to integration was unrealistic patient and/or family expectations; and (3) criteria-triggered consultation to PC was the most feasible way to achieve integration.
CONCLUSION: Our findings indicate that the majority of respondents perceive that the presence of PC in ICU will improve EOLC. Future quality improvement initiatives can focus on developing a set of criteria for triggering PC consults.
BACKGROUND: The Veterans Health Administration (VHA) provides care to the one of the largest cohorts of patients with advanced liver disease (ALD) in the USA.
AIMS: We performed a national survey to assess system-wide strengths and barriers to care for Veterans with ALD in this national integrated healthcare setting.
METHODS: A 52-item survey was developed to assess access and barriers to care in Veterans with ALD. The survey was distributed to all VHA medical centers in 2015. Results were analyzed using descriptive statistics.
RESULTS: One hundred and fifty-three sites responded to this survey. Multidisciplinary services were available on-site at > 80% of sites. Ninety-five percent of sites had mental health and addictions treatment available, with 14% co-locating these services within the liver clinic. Few sites (< 25%) provided pharmacologic treatment for alcohol use disorder in primary care or hepatology settings. Seventy-two percent of sites reported at least one barrier to liver-related care. Of the sites reporting at least one barrier, 53% reported barriers to liver transplant referral, citing complex processes and lack of staff/resources to coordinate referrals. Palliative care was widely available, but 61% of sites reported referring < 25% of their patients with ALD for palliative services.
CONCLUSION: Multidisciplinary services for Veterans with ALD are widely available at VHA sites, though barriers to optimal care remain.
Opportunities for improvement include the expansion of providers with hepatology expertise, integrating pharmacotherapy for alcohol use disorder into hepatology and primary care, streamlining the transplant referral process, and expanding palliative care referrals for patients with ALD.
PURPOSE: Palliative radiation therapy (PRT) has an essential role in cancer symptom control but is under-utilized in Ontario. This initiative aimed to implement an educational outreach intervention to improve knowledge of and access to PRT among inter-professional palliative healthcare teams across an Ontario Local Health Integration Network (LHIN).
METHODS AND MATERIALS: A needs assessment was completed from June to September 2018, with inter-professional palliative healthcare teams. Participants completed a survey to identify perceived opportunities, barriers, and enablers to recommending or referring patients for PRT. Thematic analysis informed content of the educational outreach intervention and included: how to access PRT, common indications, case studies, and side-effect management after completing PRT. The educational outreach intervention was completed from October 2018 to January 2019. Participants completed a survey and results were analyzed using descriptive statistics. The number of patients that received PRT was determined by cross-referencing the regional database with the Radiation Oncology Information System.
RESULTS: Although 22.9% of participants had previously recommended or referred patients, 96.2% of participants agreed or strongly agreed that they are likely to recommend or refer patients for PRT following the educational outreach intervention (n = 131). An increase was observed in the number of patients receiving PRT from the community during the intervention period.
CONCLUSION: The educational outreach intervention improved knowledge and the likelihood of inter-professional palliative healthcare teams accessing PRT for patients in the community. More patients now receive PRT, conveying improved symptom control and quality of life.
BACKGROUND: Although the benefits of palliative care for patients with cancer has been well established, the current utilization pattern remains largely unknown. The authors investigated the temporal trends and service settings of palliative care among Medicare beneficiaries with newly diagnosed, metastatic non-small-cell lung cancer (NSCLC).
METHODS: In total, 69,414 patients with NSCLC were identified between January 1, 2001 and December 31, 2013 from the Surveillance, Epidemiology, and End Results-Medicare-linked database. Temporal trends in palliative care use and the temporal shift in palliative care service settings were assessed using the Cochran-Armitage test. Multivariable logistic regression models were used to identify predictors for the receipt of palliative care, controlling for patients' sociodemographic and clinical characteristics.
RESULTS: Fifteen percent (10,359) of patients with NSCLC received palliative care within 1 year of a diagnosis of metastatic NSCLC. The proportion of beneficiaries receiving palliative care increased from 3.6% in 2001 to 31.9% in 2013 (P for trend <.001). Multivariable analyses demonstrated that receipt of palliative care varied significantly by sex, race, and region. Most patients (53.5%) had their first receipt of palliative care in a hospital. Less than one-third of patients (27.6%) received palliative care in an outpatient setting or received palliative care in more than 1 service setting (26.3%) in 2013.
CONCLUSIONS: The number of patients with metastatic NSCLC receiving palliative care has increased substantially. Although the hospital-based program is still the main form of palliative care delivery, more patients in recent years have received palliative care services in multiple locations.
Les aîné-es trans sont une population en devenir constituée d’individus aux identités, réalités et trajectoires très diversifiées. Cet article basé sur une recension des écrits, présente tout d’abord cette diversité, notamment en ce qui a trait à l’âge, tant à l’appartenance générationnelle qu’à l’âge du début de la transition. On y traite ensuite de la santé physique des aîné-es trans, soit des problèmes et des besoins de santé qui leur sont propres, puis des barrières auxquelles ils et elles se heurtent dans leurs démarches pour avoir accès à des soins et des services de santé adéquats. Le texte relève certaines difficultés comme l’isolement et le manque de soutien qui sont souvent le lot des aînés trans ainsi que les obstacles dans leur accès aux services sociaux et aux soins liés au vieillissement. L’article propose des pistes d’action pour les personnes professionnelles dans le domaine de la santé et des services sociaux et se conclut sur des pistes de recherche.
Objective: Medical assistance in dying (MAiD) is the medical provision of substances to end a patient’s life at their voluntary request. While legal in several countries, the implementation of MAiD is met with ethical, legislative and clinical challenges, which are often overshadowed by moral discourse. Our aim was to conduct a scoping review to explore key barriers for the integration of MAiD into existing health systems.
Methods: We searched electronic databases (CINAHL, Embase, MEDLINE, and PsycINFO) and grey literature sources from 1990 to 2017. Studies discussing barriers and/or challenges to implementing MAiD from a health system’s perspective were included. Full-text papers were screened against inclusion/exclusion criteria for article selection. A thematic content analysis was conducted to summarize data into themes to highlight key implementation barriers.
Results: The final review included 35 articles (see online Appendix 1). Six categories of implementation challenges emerged: regulatory (n = 26), legal (n = 15), social (n = 9), logistical (n = 9), financial (n = 3) and compatibility with palliative care (n = 3). Within four of the six identified implementation barriers (regulatory, legal, social and logistical) were subthemes, which described barriers related to legalizing MAiD in more detail.
Conclusion: Despite multiple challenges related to its implementation, MAiD remains a requested end-of-life option, requiring careful examination to ensure adequate integration into existing health services. Comprehensive models of care incorporating multidisciplinary teams and regulatory oversight alongside improved clinician education may be effective to streamline MAiD services.
Although the use of palliative care has increased in recent years, chronically ill Americans within a racial/ethnic minority (non-White) population underutilize this supportive and comfort-giving healthcare service. Consequently, chronically ill minority Americans experience increased pain, symptom burden, and inappropriate use of healthcare resources compared to their white counterparts. A literature review was conducted to compile and synthesize the current state of research pertinent to improving the use of palliative care among chronically ill minority Americans. Selection criteria produced 18 relevant publications, which aided in developing a conceptual model that assimilated early, episodic, and late palliative care phases along the chronic illness continuum. The goal of the conceptual model was to provide a roadmap for healthcare professionals to use when designing, implementing, managing, and/or evaluating palliative care services for chronically ill minority Americans. The literature review demonstrated that minority patients benefitted the most from culturally tailored, systematic interventions (such as advanced care planning education) in all phases of palliative care, which led to increases in advance directive completion, better symptom control, and hospice utilization. The article concludes with a discussion and fictional case study portraying the importance of culturally tailored early palliative care as a catalyst for engaging minority patients in palliative care services.
BACKGROUND: Parkinson's disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals' experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands.
METHODS: This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: “In the past 2 years, did you treat or support a person with PD who subsequently died?” The data were analyzed by thematic text analysis.
RESULTS: Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons' needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity.
CONCLUSIONS: Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons' preferences. Additional training can help to become more knowledgeable and confident.
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents.
DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway.
SETTING: Maternal-Infant Department of Padua's University Hospital.
PATIENTS: PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group).
INTERVENTIONS: The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities.
MAIN OUTCOME MEASURES: Prenatal and postnatal management, symptom's treatment, end-of-life care.
RESULTS: The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts' mediation.
CONCLUSIONS: PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.