In this paper, we strongly advocate for universal palliative care access during the COVID-19 pandemic. The delivery of universal palliative care services has been called for by leading global health organizations and experts. Nurses are critical to realizing this goal. COVID-19 diagnoses and fatalities continue to rise, underscoring the importance of palliative care, particularly in the context of scant resources. To inform the writing of this paper, we undertook a review of the COVID-19 and palliative care literature and drew on our experiences. It is very clear that investment in nurses is needed to ensure appropriate palliative care services now and into the future. Avoiding futile interventions and alleviating suffering is an ethical imperative for nurses regardless of the setting. Multi-level practices and policies to foster the delivery of safe, high-quality palliative care for all are urgently needed.
Background: Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals’ perspectives.
Methods: A survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions.
Results: Thirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams.
Conclusions: Most respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.
Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence.
Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care.
Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974).
Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included.
Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom (n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support).
Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.
Introduction: Patients with chronic obstructive pulmonary disease and interstitial lung disease have a significant burden of symptoms. Many are not offered palliative care (PC). Our aim was to investigate the attitudes to and barriers for PC among physicians.
Method: A web-based survey was conducted among members of the Danish Respiratory Society. The questionnaire included contextual (gender, age, clinical experience, type of center, patient caseload) and outcome questions (knowledge and use of statements for PC and advance care planning [ACP], practice of communication about end-of-life decisions, practice for referral to PC, barriers regarding structural surroundings, clinical skills, and organization).
Results: One hundred fifty-six (45%) physicians responded. Median age was 40 - 49 years and 55% were female. Fifty-two percent were specialists; 71% worked at a university hospital. The majority of physicians (60%) reported barriers for discussions about PC and ACP; 63% reported lack of time, 52% lack of multidisciplinary staff settings, 63% reported the unpredictability of the prognosis, and 20% insufficient awareness of patient's culture, religion, or spirituality. Fewer specialists than nonspecialists reported barriers toward ACP. The majority had knowledge of guidelines in PC and ACP, but only a minority used these in daily clinical practice.
Conclusion: The attitude toward PC and ACP conversations was positive and implementation was regarded as important, but only a minority performed these conversations in practice. Main barriers were lack of time and staff. Palliative care guidelines were known but only scarcely used. Structural changes at the organizational level to improve access to palliation for patients with nonmalignant chronic lung diseases are needed.
PURPOSE: The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services.
METHODS: This retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics.
RESULTS: There were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21).
CONCLUSION: A hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.
L’objectif de l’étude est d’identifier les freins et les leviers à la mise en place de la démarche palliative en EHPAD. C’est une étude ancillaire. Nous avons mené une enquête qualitative par entretiens semi-directifs auprès de médecins coordonnateurs d’EHPAD en Lorraine. Le recueil de données a débuté en janvier 2018 et s’est achevé en juin 2018. Les verbatim ont été analysés par théorisation ancrée. Onze médecins coordonnateurs ont participé à notre enquête. L’analyse met en évidence des contraintes structurelles et conjoncturelles propres à l’EHPAD dont l’absence de permanence médicale et infirmière, les limites des moyens matériels et personnels, ainsi que la possibilité des EHPAD intra-hospitaliers de s’affranchir de ces contraintes. La sensibilisation et la formation des acteurs de la prise en soins ont été identifiées comme des leviers majeurs dans la prise en charge palliative. À l’inverse, le manque de formation est apparu comme un obstacle. L’intervention des équipes ressources hospitalisation à domicile et équipe mobile de soins palliatifs est décrite comme un appui primordial. L’analyse a montré que l’organisation et la coopération des différents acteurs est un enjeu majeur pour la mise en place de la démarche palliative. Les dispositifs de personne de confiance et directives anticipées sont mal utilisés et ne sont d’aucune aide à la démarche palliative dans les EHPAD. Ainsi, la majorité des freins identifiés par l’enquête sont les contraintes structurelles et le manque de formation. Le principal levier à développer semble être celui de la formation, aux soins palliatifs et à l’utilisation des différents outils crées pour contourner les contraintes structurelles.
Introduction: Palliative care in Parkinson's Disease (PD) is an effective intervention to improve quality of life, although historically, access and availability have been very restricted.
Methods: We performed a retrospective cohort study using the National Inpatient Sample (NIS) data from 2007 to 2014. Diagnostic codes were used to identify patients with PD and palliative care referral. Trends were calculated and logistic analysis performed to identify predictors of palliative care use.
Results: We identified 397,963 hospitalizations from 2007 to 2014 for patients with PD. Of these, 10,639 (2.67%) were referred to palliative care. The rate of consultation increased from 0.85% in 2007 to 4.49% in 2014. For 1 unit in year increase, there was 1.23 time the odds of receiving palliative consultation (OR 1.23, CI 1.21–1.25, p < 0.0001). Hispanics (OR 0.90, CI 0.81–1.01, p = 0.0550), Black (OR 0.90, CI 0.81–1.01, p = 0.0747) and White patients had similar rates of referral after adjustment. Women were less likely to be referred to palliative care (OR 0.90, CI 0.87–0.94, p < 0.0001). Other factors strongly associated with a higher rate of referrals included private insurance when compared to Medicare (OR 2.14, CI 1.89–2.41, p < 0.0001) and higher income (OR 1.41, CI 1.30–1.53, p < 0.0001).
Conclusion: There has been a significant increase in palliative care referrals among hospitalized patients with PD in the US, although the overall rate remains low. After controlling for confounders, racial and ethnic disparities were not found. Women, patients with Medicare/Medicaid, and those with lower income were less likely to be referred to palliative care.
Background: Many patients with advanced cancer diagnosed following emergency presentation will likely benefit from palliative care (PC) interventions. This study assessed the potential patient-related barriers to
inpatient PC consultation among patients who were newly diagnosed with cancer after emergency admission (EA) and received only supportive care.
Methods: This observational study retrospectively obtained data on all patients who were admitted to our hospital after emergency transfer between January 2012 and November 2016. We identified patients for
whom cancer was listed as the primary disease in the post-hospitalization discharge summary. Out of these patients, we selected those with newly diagnosed cancer and determined whether they were referred for
inpatient PC consultation.
Results: This study recruited 141 patients with newly diagnosed cancer after EA (1.2% of all emergency transfer cases). Following diagnosis, the PC team intervened in 29.8% of all the patients enrolled in this
study and in 53.3% of patients who received only supportive care. In patients who received only supportive care, the patients who were not referred for PC consultation were significantly more likely to have shorter
survival time and less likely to receive disclosure about their cancer diagnosis than patients who were referred.
Conclusions: According to this study, short survival time and no disclosure of cancer diagnosis are potential patient-related barriers to inpatient PC consultation among patients with newly diagnosed cancer after EA.
Context: Limited access to opioids for cancer patients has been reported as a potential unintended consequence of recent regulations restricting opioid use and prescribing practices. To our knowledge, there are a limited number of peer-reviewed studies that evaluate cancer patients’ perceived difficulties when filling their opioid prescription. To understand these difficulties, we surveyed patients receiving opioids in our outpatient Supportive Care Center (SCC).
Objectives: The primary objective of this study was to evaluate cancer patients’ perceptions of overall difficulties when filling their opioid prescription. Secondary objectives included determining associations between patient characteristics and difficulty, and comparing difficulty between filling opioid and non-opioid prescriptions.
Methods: Cancer patients receiving opioids that had been seen two times or more at our SCC were asked to complete a survey. The information collected included patient demographics, clinical characteristics, and patients’ experiences filling their opioid prescription.
Results: The patients’ median age was 60 years; 54% were female and 69% were white. Forty-four patients (32%) reported that they have experienced difficulty filling their opioid prescription. More than 25% of those 44 patients perceived difficulty from interactions with the pharmacy/pharmacist. Forty-six patients (33%) reported more difficulty filling their opioid prescriptions than filling their non-opioid prescriptions.
Conclusions: This study provides evidence that patients with cancer visiting our SCC perceived difficulties obtaining their opioid prescriptions. The results suggest that negative interactions with the pharmacy/pharmacist contributes to their perceived difficulty. Additional research is needed to further characterize the contributors of the difficulties cancer patients face in filling their opioid prescriptions.
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.
Section 2 of the 2019 World Health Organization (WHO) Model List of Essential Medicines includes opioid analgesics formulations commonly used for the control of pain and respiratory distress, as well as sedative and anxiolytic substances such as midazolam and diazepam. These medicines, essential to palliative care, are regulated under the international drug control conventions overseen by United Nations (UN) specialized agencies and treaty bodies and under national drug control laws. Those national laws and regulations directly affect bedside availability of Internationally Controlled Essential Medicines (ICEMs). The complex interaction between national regulatory systems and global supply chains (now impacted by COVID-19 pandemic) directly affects bedside availability of ICEMs and patient care. Despite decades of global civil society advocacy in the UN system, ICEMs have remained chronically unavailable, inaccessible and unaffordable in Lower-and-Middle Income Countries, and there are recent reports of shortages in High Income Countries as well. The most prevalent symptoms in COVID-19 are breathlessness, cough, drowsiness, anxiety, agitation and delirium. Frequently used medicines include opioids such as morphine or fentanyl and midazolam, all of them listed as ICEMs. This paper describes the issues related to the lack of availability and limited access to ICEMs during the COVID-19 pandemic in both intensive and palliative care patients in countries of all income levels and makes recommendations for improving access.
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.