For nearly five years, bioethicists and neurologists debated whether Jahi McMath, an African American teenager, was alive or dead. While Jahi's condition provides a compelling study for analyzing brain death, circumscribing her life status to a question of brain death fails to acknowledge and respond to a chronic, if uncomfortable, bioethics problem in American health care—namely, racial bias and unequal treatment, both real and perceived. Bioethicists should examine the underlying, arguably broader social implications of what Jahi's medical treatment and experience represented. On any given day, disparities in the quality of health care and health outcomes for people of color in comparison to whites are evidenced in American hospitals and clinics. These disparities are not entirely explained by differences in patient education, insurance status, employment, income, expressed preference for treatments, and severity of disease. Instead, research indicates that, even for African Americans able to gain access to health care services and navigate institutional nuances, disparities persist across a broad range of services, including diagnostic screening and general medical care, mental health diagnosis and treatment, pain management, HIV-related care, and treatments for cancer, heart disease, diabetes, and kidney disease.
PURPOSE: Although rates of hospice use have increased over time, insurance plan- and racial/ethnic-based disparities in rates have been reported in the USA. We hypothesized that increased rates of hospice use would reduce or eliminate insurance plan-based disparities and that racial/ethnic disparities would be eliminated in managed care (MC) insurance plans.
METHODS: We studied the use of hospice care in the final 30 days of life among 40,184 elderly Texas Medicare beneficiaries who died from primary breast, colorectal, lung, pancreas, or prostate cancer between January 1, 2007 and December 31, 2013, using statewide Medicare claims linked to cancer registry data. Rates of hospice use were computed by race/ethnicity and insurance plan (MC or fee-for-service (FFS)). We used logistic regression to account for the impact of confounding factors.
RESULTS: Rates of hospice use increased significantly over time, from 68.9% in 2007 to 76.1% in 2013. By 2013, differences in hospice use rates between MC and FFS plans had been reduced from 10% to < 5%. However, after accounting for insurance plan and confounding factors, racial/ethnic minority beneficiaries' hospice use was significantly lower than non-Hispanic white beneficiaries' (p < 0.0001). This disparity was observed among both FFS and MC beneficiaries.
CONCLUSIONS: Hospice use in the final 30 days of life has increased among elderly cancer patients in Texas, virtually eliminating the difference between FFS and MC insurance plans. Despite these positive trends, racial/ethnic-based disparities persist. These disparities are not explained by confounding factors. Future research should address social and behavioral influences on end-of-life decisions.
BACKGROUND: In Denmark, a tax-based universal healthcare setting, drug reimbursement for terminal illness (DRTI) should be equally accessible for all terminally ill patients. Examining DRTI status by regions provides new knowledge on inequality in palliative care provision and associated factors. This study aims to investigate geographical variation in DRTI among terminally ill cancer patients.
METHODS: We linked socioeconomic and medical data from 135 819 Danish cancer decedents in the period 2007-15 to regional healthcare characteristics. We analyzed associations between region of residence and DRTI. Prevalence ratios (PR) for DRTI were estimated using generalized linear models adjusted for patient factors (age, gender, comorbidity and socioeconomic profile) and multilevel models adjusted for both patient factors and regional healthcare capacity (patients per general practitioner, numbers of hospital and hospice beds).
RESULTS: DRTI allocation differed substantially across Danish regions. Healthcare capacity was associated with DRTI with a higher probability of DRTI among patients living in regions with high compared with low hospice bed supply (PR 1.13, 95% CI 1.10-1.17). Also, the fully adjusted PR of DRTI was 0.94 (95% CI 0.91-0.96) when comparing high with low number of hospital beds. When controlled for both patient and regional healthcare characteristics, the PR for DRTI was 1.17 (95% CI 1.14-1.21) for patients living in the Central Denmark Region compared with the Capital Region.
CONCLUSION: DRTI status varied across regions in Denmark. The variation was associated with the distribution of healthcare resources. These findings highlight difficulties in ensuring equal access to palliative care even in a universal healthcare system.
Severe, persistent mental illnes (SPMI) presents a unique but not uncommon challenge to palliative care providers across manypractice settings, andpotentially at every stage of advanced illness. The cases below describe 2 patients with severe mental illness, both of whom had been admitted to inpatient orensic psychiatry units for a number of years, who pre-sented to an outpatient palliative care clinic. This article seeks to explore the barriers faced by these patients in accessing palliative care, and the challenges faced by providers in offering adequate supports to ensure equitable and appropriate care for both symptom management and advance care planning.
BACKGROUND: Use of inpatient palliative care (IPC) in the treatment of advanced cancer represents a well-established guideline recommendation. A recent analysis showed that patients with genitourinary cancer benefit from IPC at the second lowest rate among 4 examined primary cancers, namely lung, breast, colorectal, and genitourinary. Based on this observation, temporal trends and predictors of IPC use were examined in patients with metastatic urothelial carcinoma of the bladder (mUCB) receiving critical care therapies (CCTs).
PATIENTS AND METHODS: Patients with mUCB receiving CCTs were identified within the Nationwide Inpatient Sample database (2004-2015). IPC use rates were evaluated in estimated annual percentage change (EAPC) analyses. Multivariable logistic regression models with adjustment for clustering at the hospital level were used.
RESULTS: Of 1,944 patients with mUCB receiving CCTs, 191 (9.8%) received IPC. From 2004 through 2015, IPC use increased from 0.7% to 25.0%, respectively (EAPC, +23.9%; P<.001). In analyses stratified according to regions, the highest increase in IPC use was recorded in the Northeast (EAPC, +44.0%), followed by the West (EAPC, +26.8%), South (EAPC, +22.9%), and Midwest (EAPC, +15.5%). Moreover, the lowest rate of IPC adoption in 2015 was recorded in the Midwest (14.3%). In multivariable logistic regression models, teaching status (odds ratio [OR], 1.97; P<.001), more recent diagnosis (2010-2015; OR, 3.89; P<.001), and presence of liver metastases (OR, 1.77; P=.02) were associated with higher IPC rates. Conversely, Hispanic race (OR, 0.42; P=.03) and being hospitalized in the Northeast (OR, 0.36; P=.01) were associated with lower rate of IPC adoption. Finally, patients with a primary admission diagnosis that consisted of infection (OR, 2.05; P=.002), cardiovascular disorders (OR, 2.10; P=.03), or pulmonary disorders (OR, 2.81; P=.005) were more likely to receive IPC.
CONCLUSIONS: The rate of IPC use in patients with mUCB receiving CCTs sharply increased between 2004 and 2015. The presence of liver metastases, infections, or cardiopulmonary disorders as admission diagnoses represented independent predictors of higher IPC use. Conversely, Hispanic race, nonteaching hospital status, and hospitalization in the Midwest were identified as independent predictors of lower IPC use and represent targets for efforts to improve IPC delivery in patients with mUCB receiving CCT.
BACKGROUND: People experiencing homelessness have significantly shorter life expectancies and higher rates of morbidity and mortality than the general population. Many barriers have been identified to providing palliative care to this population. This study examines health and social service providers' experiences providing end-of-life care to people experiencing homelessness, seeking recommendations to improve both patient and provider experience.
METHODS: Qualitative study using phenomenological approach. Qualitative and quantitative surveys with 136 health and social service providers in Ontario's South East Local Health Integration Network, in-depth interview with 10 key informants.
FINDINGS: Participants approached the end-of-life care of people experiencing homelessness from a framework of dignity and respect. Themes included barriers to end-of-life care internal to the health care system; care avoidance; the experience of stigma for this population when accessing end-of-life care; lack of provider information and awareness on how to provide care for marginalized groups, how to provide care in the context of substance use, and how to assist clients in accessing the formal palliative care system; and the need for harm reduction approaches to end-of-life care for persons experiencing homelessness.
DISCUSSION: Focusing on harm reduction, and using the framework of Equity-Oriented Health Care to make systemic, cultural, and policy changes to develop a palliative-care system for persons experiencing homelessness may improve care experience for both patients and providers.
The number of older adults with cancer and the need for palliative care among this population is increasing in the United States. The objective of this systematic review was to synthesize the evidence on the barriers to palliative and hospice care utilization in older adults with cancer. A systematic literature search was conducted using PubMed, CINAHL, PsycINFO, Embase, and Cochrane Library databases (from inception to 2018) in accordance to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Research articles that examined palliative or hospice care utilization in older adults with cancer were included in this review. Fineout-Overholt's Level of Evidence was used for quality appraisal. A total of 19 studies were synthesized in this review. Barriers to palliative and hospice care utilization were categorized into socio-demographic barriers, provider-related barriers, and health insurance-related barriers. Findings revealed that male, racial minority, unmarried individuals, individuals with low socio-economic status or residing in rural areas, and fee-for-service enrollees were less likely to use palliative or hospice care. Lack of communication with care providers is also a barrier of using palliative or hospice care. The factors identified in this review provide guidance on identification of high-risk population and intervention development to facilitate the use of palliative and hospice care in older adults with cancer. Larger prospective studies on this topic are needed to address this critical issue.
It is estimated that 11.1 million people in the United States are living with serious illness, and most people with serious illness need palliative care. Quality palliative care incorporates culturally sensitive care, and with the increasing diversity in the United States, it has become even more critical that nurses and health care professionals be prepared to meet the unique needs of those living within the diverse and underserved populations of this country. Advocating for access to palliative care for the seriously ill, culturally respectful care at the end of life, and honoring values, practices, and beliefs are essential roles of the nurse. This article presents 4 examples of individuals from diverse and potentially vulnerable US populations who face unique challenges as they deal with their life-limiting diseases and face end of life.
BACKGROUND: There is increasing demand for primary care practitioners to play a key role in palliative care delivery. Given this, it is important to understand their perceptions of the barriers and enablers to optimal palliative care, and how commonly these are experienced.
AIM: To explore the type and prevalence of barriers and enablers to palliative care provision reported by primary care practitioners.
DESIGN: A systematic review of quantitative data-based articles was conducted.
DATA SOURCES: Medline, Embase and PsychINFO databases were searched for articles published between January 2007 and March 2019.
DATA SYNTHESIS: Abstracts were assessed against the eligibility criteria by one reviewer and a random sample of 80 articles were blind coded by a second author. Data were extracted from eligible full-texts by one author and checked by a second. Given the heterogeneity in the included studies' methods and outcomes, a narrative synthesis was undertaken.
RESULTS: Twenty-one studies met the inclusion criteria. The most common barriers related to bureaucratic procedures, communication between healthcare professionals, primary care practitioners' personal commitments, and their skills or confidence. The most common enablers related to education, nurses and trained respite staff to assist with care delivery, better communication between professionals, and templates to facilitate referral to out-of-hours services.
CONCLUSION: A holistic approach addressing the range of barriers reported in this review is needed to support primary care providers to deliver palliative care. This includes better training and addressing barriers related to the interface between healthcare services.
Sexual and gender minorities experience disparities throughout the life course. These are especially detrimental at the end-of-life and can include disenfranchised grief, homophobia and transphobia from medical staff, and forced outing. The best healthcare training approach to ameliorate health disparities is debated. Cultural competency trainings for clinicians have been commonly proposed by major medical institutions and certifying bodies to ameliorate lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) health disparities. However, cultural competency trainings have limitations, including (1) false competence, (2) measurement issues, and (3) ecological fallacy (i.e., assuming individuals conform to the norms of their cultural group). The purpose of this commentary is to describe the limitations of cultural competency training and argue for healthcare systems to implement cultural humility trainings as a way to reduce LGBTQ health disparities at the end-of-life. The strengths of cultural humility training include focus on (1) individuals instead of their cultural groups, (2) self-reflection, and (3) active listening. While there are challenges to implementing cultural humility trainings in the health-care system, we assert that these trainings align with the aims of healthcare systems and can be an essential tool in reducing LGBTQ health disparities. We suggest practical components of successful cultural humility trainings including leadership buy-in, appropriate outcome measurements, multiple training sessions, and fostering a safe reflection space.
Dans un contexte mondial où les disparités d’accès à la santé sont flagrantes et où l’accès aux opiacés et à la prise en charge palliative demeure largement inexistant, des professionnels de la santé s’engagent pour améliorer l’accès aux soins palliatifs pédiatriques. Sollicitée par des partenaires et disposant d’une expertise forte sur la thématique des soins palliatifs pédiatriques au travers de ses collaborateurs, l’organisation non gouvernementale Médecins du monde-Suisse a lancé fin 2014 un programme pour en favoriser l’accès dans quatre contextes : à Kinshasa en République démocratique du Congo, à Yaoundé au Cameroun, à Lomé au Togo et à Managua au Nicaragua. Le projet vise à renforcer des initiatives locales en soins palliatifs pédiatriques, contribuer à la pérennisation des offres de soins et favoriser des échanges au sein d’un réseau de professionnels aussi bien du nord que du sud tout en impliquant les institutions hospitalières et ministérielles.
Au Centre Mère et Enfant de la Fondation Chantal Biya au Cameroun, l’incidence annuelle des cancers pédiatriques est de 150 nouveaux cas. Tous les cancers de l’enfant sont représentés. Trente pour cent sont incurables au diagnostic, 20 % des patients abandonnent le traitement et 90 % arrivent à un stade avancé de la maladie. Les raisons majeures qui sont très souvent avancées par les familles pour justifier l’interruption des soins sont : le manque de moyens financiers et le recours à d’autres thérapies. Or, entre les diagnostics très tardifs, qui sont la conséquence des stades avancés de la maladie, et les déterminants socioculturels, il est nécessaire de mettre sur pied un système qui permette de résorber ces écueils. Ainsi, notre réflexion propose les soins palliatifs pédiatriques à domicile comme réponse à la discontinuité des soins en oncopédiatrie au Cameroun.
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.
OBJECTIVES: How advance care planning (ACP) is conceptualised in Australia including when, where and how ACP is best initiated, is unclear. It has been suggested that healthcare delivered in general practice provides an optimal setting for initiation of ACP discussions but uptake remains low. This systematic review and critical interpretive synthesis sought to answer two questions: (1) What are the barriers and enablers to uptake of ACP in general practice? (2) What initiatives have been used to increase uptake of ACP in general practice?
DESIGN: A systematic review and critical interpretive synthesis of the peer-reviewed literature was undertaken. A socioecological framework was used to interpret and map the literature across four contextual levels of influence including individual, interpersonal, provider and system levels within a general practice setting.
SETTING: Primary care general practice settings DATA SOURCES: Searches were undertaken from inception to July 2019 across Ovid Medline, Cumulative Index to Nursing and Allied Health Literature, Scopus, ProQuest and Cochrane Library of systematic reviews.
RESULTS: The search yielded 4883 non-duplicate studies which were reduced to 54 studies for synthesis. Year of publication ranged from 1991 to 2019 and represented research from nine countries. Review findings identified a diverse and disaggregated body of ACP literature describing barriers and enablers to ACP in general practice, and interventions testing single or multiple mechanisms to improve ACP generally without explicit consideration for level of influence. There was a lack of cohesive guidance in shaping effective ACP interventions and some early indications of structured approaches emerging.
CONCLUSION: Findings from this review present an opportunity to strategically apply the ACP research evidence across targeted levels of influence, and with an understanding of mediators and moderators to inform the design of new and enhanced ACP models of care in general practice.
PROSPERO REGISTRATION NUMBER: CRD42018088838.
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.
Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication. Yet, few studies have examined the effectiveness of ACP interventions among African Americans. The objectives of reducing disparities in the quality of palliative care for older African Americans through improved advance care planning (EQUAL ACP) are as follows: to compare the effectiveness of two interventions in (1) increasing ACP among African Americans and whites and (2) reducing racial disparities in both ACP and end-of-life care; and to examine whether racial concordance of the interventionist and patient is associated with ACP. EQUAL ACP is a longitudinal, multisite, cluster randomized trial and a qualitative study describing the ACP experience of participants. The study will include 800 adults =65 years of age (half African American and half white) from 10 primary care clinics in the South. Eligible patients have a serious illness (advanced cancer, heart failure, lung disease, etc.), disability in activities of daily living, or recent hospitalization. Patients are followed for one year and participate in either a patient-guided, self-management ACP approach, including a Five Wishes form or structured ACP with Respecting Choices First Steps. The primary outcome is formal or informal ACP—completion of advance directives, documented discussions with clinicians, and other written or verbal communication with surrogate decision makers about care preferences. Secondary outcomes assessed through after-death interviews with surrogates of patients who die during the study include receipt of goal-concordant care, health services use in the last year of life, and satisfaction with care. EQUAL ACP is the first large study to assess which strategies are most effective at both increasing rates of ACP and promoting equitable palliative care outcomes for seriously ill African Americans.
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.