On March 28, 2020, the Office of Civil Rights at the Department of Health and Human Services (HHS) opened investigations into recently released critical care crisis triage protocols. Disability rights advocates are urging Congress to prohibit crisis triage based on “anticipated or demonstrated resource-intensity needs, the relative survival probabilities of patients deemed likely to benefit from medical treatment, and assessments of pre- or post-treatment quality of life.”
There is growing evidence that palliative care supports the needs of patients with advanced lung cancer. Early palliative care referral has been shown to improve quality of life, decrease symptom burden, and help patients better understand their illness. However, access to palliative care specialists is limited. All providers caring for patients with lung cancer should be able to manage basic symptoms and engage in routine discussions about goals of care, prognosis, and suffering. By developing primary palliative care skills, more patients, even those with earlier stages of lung cancer, benefit from better symptom management, communication, support, and quality of life.
OBJECTIVE: At the end of life, the need for care increases. Yet, for structurally vulnerable populations (i.e., people experiencing homelessness and poverty, racism, criminalization of illicit drug use, stigma associated with mental health), access to care remains highly inaccessible. Emerging research suggests that enhancing access to palliative care for these populations requires moving care from traditional settings, such as the hospital, into community settings, like shelters and onto the street. Thus, inner-city workers (ICWs) (e.g., housing support and community outreach) have the potential to play pivotal roles in improving access to care by integrating a "palliative approach to care" in their work.
METHOD: Drawing upon observational field notes and interview data collected for a larger critical ethnographic study, this secondary thematic analysis examines ICWs' (n = 31) experiences providing care for dying clients and garners their perspectives regarding the constraints and facilitators that exist in successfully integrating a palliative approach to care in their work.
RESULTS: Findings reveal three themes: (1) Approaches, awareness, and training; (2) Workplace policies and filling in the gaps; and (3) Grief, bereavement, and access to supports. In brief, ICWs who draw upon harm reduction strategies strongly parallel palliative approaches to care, although more knowledge/training on palliative approaches was desired. In their continuous work with structurally vulnerable clients, ICWs have the opportunity to build trusting relationships, and over time, are able to identify those in need and assist in providing palliative support. However, despite death and dying is an everyday reality of ICWs, many described a lack of formal acknowledgement by employers and workplace support as limitations.
SIGNIFICANCE OF RESULTS: Findings contribute promising practices for enhancing equitable access to palliative care for society's most vulnerable populations by prioritizing front-line workers' perspectives on how best to integrate a palliative approach to care where structurally vulnerable populations live and die.
BACKGROUND: There is increasing recognition of the importance of early incorporation of palliative care services in the care of patients with advanced cancers. Hospice-based palliative care remains underutilized for black patients with cancer, and there is limited literature on racial disparities in use of non-hospice-based palliative care services for patients with cancer.
OBJECTIVE: The primary objective of this study is to describe racial differences in the use of inpatient palliative care consultations (IPCC) for patients with advanced cancer who are admitted to a hospital in the United States.
DESIGN: This retrospective cohort study analyzed 204 175 hospital admissions of patients with advanced cancers between 2012 and 2014. The cohort was identified through the National Inpatient Dataset. International Classification of Disease, Ninth Revision codes were used to identify receipt of a palliative care consultation.
RESULTS: Of this, 57.7% of those who died received IPCC compared to 10.5% who were discharged alive. In multivariable logistic regression models, black patients discharged from the hospital, were significantly less likely to receive a palliative care consult compared to white patients (odds ratio [OR] black: 0.69, 95% CI: 0.62-0.76).
CONCLUSIONS: Death during hospitalization was a significant modifier of the relationship between race and receipt of palliative care consultation. There are significant racial disparities in the utilization of IPCC for patients with advanced cancer.
Background: African Americans receive more aggressive end-of-life care than Whites. Little is known about how palliative care consultation to discuss goals-of-care (“PCC”) is associated with acute care utilization and costs by race.
Objective: To compare future acute care costs and utilization between propensity-matched cohorts of African Americans with and without PCC, and Whites with and without PCC.
Design: Secondary analysis of a retrospective cohort study.
Setting/Subjects: Thirty-five thousand one hundred and fifty-four African Americans and Whites age 18+ admitted for conditions other than childbirth or rehabilitation, who were not hospitalized at the end of the study, and did not die during index hospitalization (hospitalization during which the first PCC occurred).
Measurements: Accumulated mean acute care costs and utilization (30-day readmissions, future hospital days, future intensive care unit [ICU] admission, future number of ICU days) after discharge from index hospitalization.
Results: No significant difference between African Americans with or without PCC in mean future acute care costs ($11,651 vs. $15,050, p = 0.09), 30-day readmissions (p = 0.58), future hospital days (p = 0.34), future ICU admission (p = 0.25), or future ICU days (p = 0.30). There were significant differences between Whites with PCC and those without PCC in mean future acute care costs ($8,095 vs. $16,799, p < 0.001), 30-day readmissions (10.2% vs. 16.7%, p < 0.0001), and future days hospitalized (3.7 vs. 6.3 days, p < 0.0001).
onclusions: PCC decreases future acute care costs and utilization in Whites and, directionally but not significantly, in African Americans. Research is needed to explain why utilization and cost disparities persist among African Americans despite PCC.
Evidence of quality of life improvements in patients with advanced-stage cancer has spurred a move towards early integration of palliative care into the outpatient setting. As discussed herein, meaningful and sustained improvements in timely access to palliative care requires commitments to funding, encouraging integration and routinizing referral across care settings. More palliative medicine training positions as well as broader education of clinicians and the public about the benefits of palliative care throughout the disease course are also needed.
Hospice programmes are important for providing end-of-life care to patients with life-limiting illnesses. Hospice enrolment improves quality of life for patients with advanced cancer and reduces the risk of depression for caregivers. Despite the clear benefits of hospice care, patients with haematological malignancies have the lowest rates of enrolment among patients with any tumour subtype. Furthermore, when patients with haematological disorders do enrol into hospice care, they are more likely to do so within 3 days of death than are patients with non-haematological malignancies. Although reasons for low and late hospice use in this population are multifactorial, a key barrier is limited access to blood transfusions in hospice programmes. In this Viewpoint, we discuss the relationship between transfusion dependence and hospice use for patients with blood cancers. We suggest that rather than constraining patients into either transfusion or hospice models, policies that promote combining palliative transfusions with hospice services are likely to optimise end-of-life care for patients with haematological malignancies.
PURPOSE: ASCO guidelines recommend palliative care (PC) referral for patients with advanced or metastatic cancer. Despite this, implementation has considerable hurdles. First-year oncology fellows at our institution identified low rates of PC utilization in their longitudinal clinic as a metric needing improvement.
METHODS: A fellow-led multidisciplinary team aimed to increase PC utilization for patients with advanced cancer followed in he first-year fellows' clinic from a baseline of 11.5% (5 of 43 patients, July to December of 2018) to 30% over a 6-month period. Utilization was defined as evaluation in the outpatient PC clinic hosted in the cancer center. The team identified the following barriers to referral: orders difficult to find in the electronic medical record (EMR), multiple consulting mechanisms (EMR, by phone, or in person), EMR request not activating formal consult, no centralized scheduler to contact or confirm appointment, and poor awareness of team structure. Plan-Do-Study-Act (PDSA) cycles were implemented based on identified opportunities. Data were obtained from the EMR.
RESULTS: The first PDSA cycle included focus groups with stakeholders, standardizing referral process via single order set, identifying a single scheduler with bidirectional communication, and disseminating process changes. PDSA cycles were implemented from January to June of 2019. Rates of PC use increased from 11.5% before the intervention to 48.4% (48 of 99 patients) after the intervention.
CONCLUSION: A multidisciplinary approach and classic quality improvement methodology improved PC use in patients with advanced cancer. The pilot succeeded given the small number of fellows, buy-in from stakeholders, and institutional and leadership support. Straightforward EMR interventions and ancillary staff use are effective in addressing underreferrals.
BACKGROUND: Despite the significant benefits of palliative care (PC) services for cancer patients, multiple challenges hinder the provision of PC services for these patients. Low- and middle-income countries (LMICs) are witnessing a sharp growth in the burden of non-communicable diseases. There is a significant gap between demand and supply of PC in LMICs in current health services. This review aims to synthesise evidence from previous reviews and deliver a more comprehensive mapping of the existing literature about personal, system, policy, and organisational challenges and possible facilitators on the provision of PC services for cancer patients in LMICs.
METHODS: A systematic review of reviews was performed following PRISMA guidelines. PubMed, EMBASE, SCOPUS, PsycINFO, Web of Sciences, CINAHL, and Cochrane Library databases were searched to identify review papers published between 2000 and 2018 that considered challenges and possible facilitators to PC provision. A modified socioecological model was used as a framework for analysing and summarising findings.
RESULTS: Fourteen reviews were included. The reviews varied in terms of aim, settings, and detail of the challenges and possible facilitators. The main challenges of personal and health care systems included knowledge deficits and misunderstandings from patients, families, the general public, and health care providers about PC; and inadequate number of trained workforce. Besides, limited physical infrastructure, insufficient drugs for symptom relief and lack of a comprehensive national plan for implementing PC were the core organisational and policy level challenges that were recognised. Furthermore, the main possible facilitators that were identified included provision of adequate training for health care providers and health education for patients, families and the general public to enhance their knowledge, beliefs, and attitudes to PC. Finally, involvement of policymakers and making drugs available for symptom relief should also be in place to improve the health care systems.
CONCLUSIONS: Understanding challenges to the provision of PC for people with cancer could help in the development of a PC pathway in LMICs. This knowledge could be used as a guide to develop an intervention programme to improve PC. Political influence and support are also required to ensure the sustainability and the provision of high-quality PC.
The President of the United States has repeatedly touted hydroxychlororquine as a likely cure for COVID-19 and urged Americans to try it, stating at one of his media briefings, “What do you have to lose? What do you have to lose? Take it” . A few others around the world have chimed in to promote one drug or another, this drug in combination with others, or their own favorite untested nostrums. This has led to drug hoarding, the inability of patients who actually need and benefit from certain drugs to access them, and serious side effects and even deaths from self-medication.
In current debates about allocation of scarce ICU resources, we suggest there is undue optimism about the ‘good’ of intensive care unit (ICU) access. Most critical COVID-19 patients who receive access to a ventilator will still die. The minority who survive will likely leave with significant morbidity and a long and uncertain road to recovery. This reality is obscured in the current bioethics literature on ICU triage in which scarcity and value are conflated.
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Introduction: Many patients and their families are hesitant to consult a palliative care (PC) team. In 2014, approximately 6,000,000 people in the United States could benefit from PC, and this number is expected to increase over the next 25 years.
Objectives: The purpose of this review is to shed light on the significance of PC and provide a holistic view outlining both the benefits and existing barriers.
Methods: A literature search was conducted using MEDLINE (PubMed), Cochrane Central Register of Controlled Trials, and Web of Science to identify articles published in journals from 1948 to 2019. A narrative approach was used to search the grey literature.
Discussion: Traditionally, the philosophy behind PC was based on alleviating suffering associated with terminal illnesses; PC was recommended only after other treatment options had been exhausted. However, the tenets of PC are applicable to anyone with a life-threatening illness as it is beneficial in conjunction with traditional treatments. It is now recognized that PC services are valuable when initiated alongside disease-modifying therapy early in the disease course. Studies have shown that PC decreased total symptom burden, reduced hospitalizations, and enabled patients to remain safely at home.
Conclusion: As the population ages and chronic illnesses become more widespread, there continues to be a growing need for PC programs. The importance of PC should not be overlooked despite existing barriers such as the lack of professional training and the cost of implementation. Education and open discussion play essential roles in the successful early integration of PC.
Background: Despite mounting evidence that specialty palliative care (PC) improves patients' symptoms, quality of life, and goal concordant care, these services are likely underutilized.
Objective: To determine the rate of missed and delayed opportunities for specialty PC in patients with peri-hospital death.
Design: A retrospective, cross-sectional analysis, using electronic medical records of a state-wide healthcare system in Colorado, was performed. Included were adults who died during admission or within seven days of discharge from January 2015 to October 2018 at an academic medical center and had prior encounters within the affiliated state-wide healthcare system in the last year of life. Excluded were patients with sudden or obstetrics-related deaths. Referral orders from the electronic medical record identified specialty PC consultation. Data from the Colorado Department of Public Health and Environment linked with the medical record determined time from first PC consultation to death.
Results: The sample included 2088 decedent patients, with most deaths (81%) occurring in the hospital. Only 33% of patients had PC consultation, which was higher for patients with cancer (42%) than for those without cancer (26%). Of patients with specialty PC consultation, the median time from first referral to death was eight days (interquartile range: 3.25–25 days).
Conclusions: Patients with peri-hospital death have low rates of specialty PC consultation, which, when present, often occurs close to death. This suggests there is a high rate of missed opportunities for specialty PC in this population.
Background: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization.
This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families.
Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis.
Results: Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients’ openness to their own needs).
Conclusions: To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals’ communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.
Context: Socioeconomic status (SES) is an important determinant of disparities in health services and may affect the utilization of hospice care services during end-of-life (EOL) treatment in cancer patients. However, previous studies evaluating the association between SES and utilization of hospice care services among cancer patients revealed inconsistent findings.
Objectives: This study aimed to determine the association between SES and utilization of hospice care services during the last year of life in cancer patients.
Methods: From January 1, 2006, through December 31, 2016, we identified adults with cancer diagnoses from the Registry for Catastrophic Illness in Taiwan. The cancer diagnoses in study subjects were proved by the pathohistological reports. The utilization of hospice care services during the last year of life in cancer patients included hospice inpatient care, hospice-shared care, and hospice home care.
Results: In the follow-up period, 28.6% of 516,409 cancer patients utilized hospice care services during the last year of life. After adjusting for other covariates, low SES significantly reduced the utilization of hospice care services by 18% during the last year of life in cancer patients. Moreover, a positive trend between decreasing levels of SES and lower utilization of hospice care during EOL treatment was noted (P <0.001).
Conclusions: Low SES was associated with lower utilization of hospice care services during EOL care in cancer patients. Our data support the need to target low SES cancer patients in efforts to optimally increase hospice care services during EOL care.
Objective:To investigate trends and associated factors of utilization of hospital palliative care among patients with systemic lupus erythematosus (SLE) and analyze its impact on length of hospital stay, hospital charges, and in-hospital mortality.
Methods: Using the 2005-2014 National Inpatient Sample in the United States, the compound annual growth rate was used to investigate the temporal trend of utilization of hospital palliative care. Multivariate multilevel logistic regression analyses were performed to analyze the association with patient-related factors, hospital factors, length of stay, in-hospital mortality, and hospital charges.
Results: The overall proportion of utilization of hospital palliative care for the patient with SLE was 0.6% over 10 years. It increased approximately 12-fold from 0.1% (2005) to 1.17% (2014). Hospital palliative care services were offered more frequently to older patients, patients with high severity illnesses, and in urban teaching hospitals or large size hospitals. Patients younger than 40 years, the lowest household income group, or Medicare beneficiaries less likely received palliative care during hospitalization. Hospital palliative care services were associated with increased length of stay (? = 1.407, P < .0001) and in-hospital mortality (odds ratio, 48.18; 95% confidence interval, 41.59-55.82), and reduced hospital charge (? = ?0.075, P = .009).
Conclusion: Hospital palliative care service for patients with SLE gradually increased during the past decade in US hospitals. However, this showed disparities in access and was associated with longer hospital length of stay and higher in-hospital mortality. Nevertheless, hospital palliative care services yielded a cost-saving effect.
Palliative care services are under-resourced at the best of times. The 2017 Lancet Commission on Palliative Care and Pain Relief described the widespread lack of access to inexpensive and effective interventions as a travesty of justice. And these are not the best of times. As health systems become strained under COVID-19, providing safe and effective palliative care, including end-of-life care, becomes especially vital and especially difficult.
As the coronavirus disease 2019 (COVID-19) pandemic intensifies, shortages of ventilators have occurred in Italy and are likely imminent in parts of the US. In ordinary clinical circumstances, all patients in need of
mechanical ventilation because of potentially-reversible conditions receive it, unless they or their surrogates decline. However, there are mounting concerns in many countries that this will not be possible and that patients
who otherwise would likely survive if they received ventilator support will die because no ventilator is available. In this type of public health emergency, the ethical obligation of physicians to prioritize the well-being of individual
patients may be overridden by public health policies that prioritize doing the greatest good for the greatest number of patients.These circumstances raise a critical question: when demand for ventilators and other intensive
treatments far outstrips the supply, what criteria should guide these rationing decisions?
Radiation therapy (RT) can effectively palliate a variety of symptoms in patients with metastatic cancer, using relatively low doses that infrequently cause major side effects. However, palliative radiation is often underutilized and sub-optimally implemented. In this study, we surveyed the Society of Palliative Radiation Oncology (SPRO) membership to identify barriers to appropriate referral for palliative RT that they encounter in their practice, and identify specific groups of physicians who radiation oncologists believed would benefit most from further education on when to refer patients. A total of 28 radiation oncologists responded to the survey with a response rate of 20.5%. On average, participants felt that referrals for palliative RT were inappropriately delayed 46.5% [standard deviation (STD) 20.2%] of the time. The most common barrier to referral for medical oncologists was thought to be potential interference with systemic therapy (33%); for primary care physicians and surgeons it was a lack of knowledge about the benefit (42%), and for palliative care physicians it was concern for patient convenience (25%). For brain metastases and spinal cord compression radiation oncology was felt to be part of the initial referral sequence more than 50% of the time, but less so for thoracic airway obstruction/bleeding (38%), esophageal obstruction (16%), or urinary obstruction/bleeding (8%), where another subspecialist was more often consulted first. Primary care, geriatric medicine, and emergency medicine were considered among the least knowledgeable specialties about palliative radiation. These hypothesis-generating findings can guide approaches to improve referral patterns for this important aspect of supportive care.
Mexican Americans (MAs), 1 of 10 subgroups of Latinos, are the largest and fastest growing Latino subgroup in the United States; yet, their access to end-of-life (EOL) care using hospice services is low. An investigation was needed into extant research-based knowledge about factors influencing EOL care decisions among MAs to guide health-care professionals in assisting MAs to make timely, acceptable, and satisfactory EOL care decisions. To determine whether gender was an influence on EOL decision-making among older MAs, CINAHL and PubMed were searched for articles published between 1994 and 2018. Relevant sources were also identified through the reference lists of review articles. Reports were included if they were written in English, involved participants aged 50 years and older who identified themselves as MA, and data derived directly from participants. Reports in which MAs were not equally represented in the sample, large databases, and instrumentation development and testing articles were excluded. Of the 345 unduplicated articles identified in our electronic search and the 47 identified through review articles, 22 met the inclusion criteria. Content analysis was conducted using a priori codes from the Ethno-Cultural Gerontological Nursing Model (ECGNM). Only 8 (36%) of the 22 articles reported on MA older adults' gendered experiences related to EOL decision-making. Results indicate an association between gender and EOL decision-making. As the older MA population grows, tackling disparities in EOL services use requires attention to how culture and gender influence EOL decision-making and care.