India, being home to one -sixth of the world's population has a huge burden of suffering from life limiting diseases. It is estimated that in India the total no. of people who need palliative care (PC)is likely to be 5.4 million people a year. Though PC was introduced nearly 30 years ago, it is still in its infancy with less than 1% of patients having access to PC. India ranks at the bottom of the Quality Of Death Index in overall score. Obstacles are too many and not only include factors like population density, poverty, geographical density, restrictive policies regarding opioid prescription, workforce development at base level but also limited national PC policy and lack of institutional interest in palliative care. However there has been a steady progress in the past few years through community owned PC services. South Indian state of Kerala which has 3% of Indian population, stands out in terms of achieving coverage of palliative care. On the national level recent years saw several palpable changes including the creation of a National Programme for Palliative care and also the Parliament amended India's cumbersome Narcotic Drugs and Psychotropic Substances Act (NDPS) thus overcoming many of the legal barriers to opioid access. Initially WHO and now the IAPC has taken over the responsibility of spreading the message of palliative care in India, but we still have a long way to go. Education of the professionals and sensitization of the public through awareness campaigns are vitals for improving access to PC in India. Process of implementing PC plan into action requires strong Advocacy, political support and integration across all levels of care.
Refugees are a highly vulnerable marginalized population with unique medical and psychosocial needs. Unfortunately, the Interim Federal Health Program (IFHP) in Canada partially covers the medical needs of refugee claimants but does not include hospice or home-based palliative care. This report describes the case of a refugee claimant cancer patient who was admitted to an inpatient tertiary cancer center medical oncology ward in Ontario, Canada, for [about] 11 months due to insufficient community-based palliative care resources available for patients covered by the IFHP. This case report highlights the differences in palliative care coverage between the provincial health care coverage, Ontario Health Insurance Plan, and federal health care coverage for refugees, IFHP, from a practical point of view, how this can affect the palliative care available for patients and their families, and the impact on the Canadian health care system.
The COVID-19 pandemic has strained health care systems beyond capacity resulting in many people not having access to life-sustaining measures even in well-resourced countries. Palliative and end-of-life care are therefore essential to alleviate suffering and ensure a continuum of care for patients unlikely to survive. This is challenging in sub-Saharan Africa where lack of trained teams on basic palliative care and reduced access to opioids limit implementation of palliative and end-of-life care. At the same time, health care providers have to cope with local cultural conceptions of death and absence of advance care directives.
PURPOSE: As part of a larger effort to integrate palliative care into a cancer center, we identified barriers to palliative care referral for patients with breast or gynecologic cancer and developed a pilot program to improve access to palliative care services.
METHODS: We developed a multidisciplinary steering committee to uncover barriers to palliative care referral and developed a pilot program, called the Warm Handoff. Through ongoing collaboration and midpilot feedback sessions, we identified several additional barriers and opportunities to increase access to palliative care.
RESULTS: Clinicians used the initial Warm Handoff process only 20 times over a period of 7 months. Of those calls, 10 were for issues outside of those that the Warm Handoff pilot was intended to address. During the pilot, we identified lack of access to urgent visits and clinician telephone availability for clinical case discussion as additional barriers to access. Increased collaboration led to the creation of a clinical provider of the day (CPOD) care model, which allowed for a notable increase in the capacity to see urgent consults. After this intervention, we observed an average of 19 patients seen urgently per month. In addition, there was a trend toward increasing referrals from breast oncology after the initiation of the CPOD.
CONCLUSION: A CPOD model, developed via close oncology/palliative care collaboration, resulted in increased utilization of palliative care services.
BACKGROUND: Myelophthisis (MPT) has been associated with a dreadful prognosis. Patients' access to palliative care (PC) and factors influencing its clinical outcomes are poorly described. Our aim was to analyze the impact of patient- and disease-specific characteristics on survival of patients with MPT and describe their use of PC in a resource-limited setting.
METHODS: Retrospective study including patients with solid tumor MPT, diagnosed between 1996 and 2018.
RESULTS: Seventy patients (median 58 years) were included. 58% were synchronously diagnosed with MPT at time of primary tumor diagnosis. Most common oncologic diagnoses were prostate (25.7%), gastrointestinal (20%), and breast (18.6%) neoplasms. Median overall survival (OS) was 1.9 months. Primaries other than prostate, breast, and lung (HR 1.37, 95% CI 1.15 - 1.8; p = 0.02) and transfusion requirements (HR 2.8, 95% CI 1.01 - 7.9; p = 0.04) were independently associated with decreased OS. Administration of multiple systemic therapeutic interventions (HR 0.15, 95% CI 0.06 - 0.39; p = 0.01) was the sole factor improving OS. Assessment by PC was pursued in 51.4% of patients. The median number of consults per patient was two, with no difference in assessment rate or consult number across different primaries (P = 0.96). Four cases of palliative sedation were reported, all performed by the primary care team.
CONCLUSION: MPT is highly heterogeneous and risk stratification to optimize the use of therapeutic interventions in unison with palliative interventions is needed to maximize efforts toward improving patient quality of life. There is an alarming need of PC services in the multidisciplinary management of patients within developing regions.
BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, "Taking Care of You" (TCY), in a tertiary care, university hospital in Cali, Colombia.
METHODS: A program's database was built with children between 0 to 18 years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis.
RESULTS: Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period.
CONCLUSIONS: The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.
Background: 40 million people in the world are in need of palliative care, but only one-seventh of that population receive services. Underuse of palliative care in low resource countries exacerbates suffering in patients with life limiting illnesses such as cancer.
Objectives: The current study was conducted to identify barriers, facilitators and recommended strategies for informing development of a home-based palliative care intervention for poor and medically underserved rural patients in Kolkata, India.
Methods: Semi-structured interviews were conducted with 20 clinical and patient stakeholders in Kolkata, India. Questions queried current practices for delivering palliative care, along with barriers, facilitators and optimal strategies for implementing homebased palliative care.
Results: We identified some key barriers to palliative care delivery in rural areas: lack of access to palliative care till late stages; patients unaware of their cancer stage; lack of affordability of medication and treatment costs; transportation challenges to access care; strict morphine distribution regulations making it challenging for patients to obtain morphine; cultural factors discouraging patients from seeking palliative care; resistance from medical community to use “rural medical practitioners (RMPs)” to deliver care. We also identified important facilitators, including availability of existing palliative care infrastructure at the cancer center, network of RMPs to serve as CHWs to facilitate palliative care delivery, low morphine cost and family support system for patients.
Conclusion: Our findings provide evidence that a palliative care intervention which leverages an existing CHW infrastructure may be a feasible model for expanding the reach of palliative care to rural underserved patients.
Background: Humanitarian non-governmental organizations provide assistance to communities affected by war, disaster and epidemic. A primary focus of healthcare provision by these organizations is saving lives; however, curative care will not be sufficient, appropriate, or available for some patients. In these instances, palliative care approaches to ease suffering and promote dignity are needed. Though several recent initiatives have increased the probability of palliative care being included in humanitarian healthcare response, palliative care remains minimally integrated in humanitarian health projects.
Methods: We conducted a qualitative study using interpretive description methodology to investigate humanitarian policy-makers' and health care professionals' experiences and perceptions of palliative care during humanitarian crises. In this article, we report on the analysis of in-depth interviews with 24 participants related to their perceptions of obstacles to providing palliative care in humanitarian crises, and opportunities for overcoming these obstacles. Among the participants, 23 had experience as humanitarian health professionals, and 12 had experience with policy development and organizational decision-making.
Results: Participants discussed various obstacles to the provision of palliative care in humanitarian crises. More prominent obstacles were linked to the life-saving ethos of humanitarian organizations, priority setting of scarce resources, institutional and donor funding, availability of guidance and expertise in palliative care, access to medication, and cultural specificity around death and dying. Less prominent obstacles related to continuity of care after project closure, equity, security concerns, and terminology.
Conclusion: Opportunities exist for overcoming the obstacles to providing palliative care in humanitarian crises. Doing so is necessary to ensure that humanitarian healthcare can fulfill its objectives not only of saving lives, but also of alleviating suffering and promoting dignity of individuals who are ill or injured during a humanitarian crises, including persons who are dying or likely to die.
Community engagement and -education are proposed to foster equity in access to care and to ensure dignity of migrant patients in the last phase of life, but evidence is lacking. We evaluated nine community educational interactive meetings about palliative care (136 participants totally)- co-created with educators from our target groups of Moroccan, Surinamese and Turkish migrants-with a mixed methods approach, including 114 questionnaires, nine observations, nine interviews with educators, and 18 pre- and post- group- and individual interviews with participants. Descriptive and thematic analysis was used. 88% of the participants experienced the meetings as good or excellent. Educators bridged an initial resistance toward talking about this sensitive topic with vivid real-life situations. The added value of the educational meetings were: (1) increased knowledge and awareness about palliative care and its services (2) increased comprehensiveness of participant's wishes and needs regarding dignity in the last phase; (3) sharing experiences for relief and becoming aware of real-life situations. Community engagement and -education about palliative care for migrants effectively increases knowledge about palliative care and is a first step towards improved access to palliative care services, capacity building and a dignified last phase of life among migrants.
There has been a systematic and largely unconscious neglect of gender in palliative care research, practice and policy. This is despite significant, although previously uncollated, evidence that gender influences almost all aspects of end-of-life preferences, experiences and care. The social situations of women, transgender people and men often differ from one another while also intersecting in complex ways with sex differences rooted in biology. If palliative care is to meet its aspiration of providing universal benefit, it urgently needs to address a range of gender inequalities currently (re)produced at the level of the laboratory all the way through to government departments. In this call to arms, we spotlight specific instances where gender inequalities have been documented, for example, regarding end-of-life caregiving, end-of-life intervention and palliative care access and benefit. We highlight how gender inequalities intersect with other social determinants of health including ethnicity and economic status to exacerbate situations of marginality. We conclude by offering some practical steps that can be taken to support the discipline to adopt a more critical gender lens to support more equitable research, policy and practice.
OBJECTIVES: This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN: This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTING: All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS: We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS: Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS: Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
OBJECTIVE: Explore veteran-specific factors impacting the acceptance of palliative care services at a Veterans Health Administration hospital.
METHODS: Prospective, focused one-on-one interviews were conducted with 18 inpatient veterans with an initial consult to receive palliative care services. Domains impacting reception of outpatient palliative care management were evaluated including knowledge deficit, emotional barriers, physical barriers, psychosocial barriers, and physical support. Themes and trends from interview responses were analyzed using a qualitative directed content analysis approach.
RESULTS: The following themes were discovered to influence veteran participation in outpatient palliative care: Knowledge Deficit, Environmental Factors, Positive Patient Satisfaction, Openness to Technology, and Resiliency. Characteristics of veterans interviewed included an average age of 71 with an average distance from the hospital of 59 miles.
CONCLUSION: The identification of factors impacting veteran access to palliative care will be used to guide interventions and improve receipt of services. Care of seriously ill veterans may be substantially improved by facilitating access to palliative care.
BACKGROUND: Palliative care is typically performed in-hospital. However, Emergency Medical Service (EMS) providers are uniquely positioned to deliver early palliative care as they are often the first point of medical contact. The aim of this study was to gather the perspectives of advanced life support (ALS) providers within the South African private EMS sector regarding pre-hospital palliative care in terms of its importance, feasibility and barriers to its practice.
METHODS: A qualitative study design employing semi-structured one-on-one interviews was used. Six interviews with experienced, higher education qualified, South African ALS providers were conducted. Content analysis, with an inductive-dominant approach, was performed to identify categories within verbatim transcripts of the interview audio-recordings.
RESULTS: Four categories arose from analysis of six interviews: 1) need for pre-hospital palliative care, 2) function of pre-hospital healthcare providers concerning palliative care, 3) challenges to pre-hospital palliative care and 4) ideas for implementing pre-hospital palliative care. According to the interviewees of this study, pre-hospital palliative care in South Africa is needed and EMS providers can play a valuable role, however, many challenges such as a lack of education and EMS system and mindset barriers exist.
CONCLUSION: Challenges to pre-hospital palliative care may be overcome by development of guidelines, training, and a multi-disciplinary approach to pre-hospital palliative care.
There is a disproportionate burden of illness and death among racial/ethnic minorities related to COVID-19. The importance of reaching groups suffering the most with resources such as advance directive guidance, telehealth, and culturally sensitive education materials is vital to providing quality, inclusive care. A crisis presents an opportunity to unite and problem-solve to help avoid the dire consequences facing inaction. In this way, inclusive responses by hospices, social workers, other community partners during the COVID-19 pandemic can help reach and alleviate the pain of those groups most afflicted. We offer hospice inclusion strategies that align with general pandemic response trends that may lead to greater hospice inclusion beyond this public health emergency.
Palliative care is a values-driven approach for providing holistic care for individuals and their families enduring serious life-limiting illness. Despite its proven benefits, access and acceptance is not uniform across society. The genesis of palliative care was developed through a traditional Western lens, which dictated models of interaction and communication. As the importance of palliative care is increasingly recognized, barriers to accessing services and perceptions of relevance and appropriateness are being given greater consideration. The COVID-19 pandemic and recent social justice movements in the United States, and around the world, have led to an important moment in time for the palliative care community to step back and consider opportunities for expansion and growth. This article reviews traditional models of palliative care delivery and outlines a modified conceptual framework to support researchers, clinicians, and staff in evaluating priorities for ensuring individualized patient needs are addressed from a position of equity, to create an actionable path forward.
BACKGROUND: Patient access to medicines at home during the last year of life is critical for symptom control, but is thought to be problematic. Little is known about healthcare professionals' practices in supporting timely medicines access and what influences their effectiveness. The purpose of the study was to evaluate health professionals' medicines access practices, perceived effectiveness and influencing factors.
METHODS: On-line questionnaire survey of health care professionals (General Practitioners, Community Pharmacists, community-based Clinical Nurse Specialists and Community Nurses) delivering end-of-life care in primary and community care settings in England. Quantitative data were analysed using descriptive statistics.
RESULTS: One thousand three hundred twenty-seven responses were received. All health professional groups are engaged in supporting access to prescriptions, using a number of different methods. GPs remain a predominant route for patients to access new prescriptions in working hours. However, nurses and, increasingly, primary care-based pharmacists are also actively contributing. However, only 42% (160) of Clinical Nurse Specialists and 27% (27) of Community Nurses were trained as prescribers. The majority (58% 142) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Satisfaction with access to shared patient records to facilitate medicines access was low: 39% (507) were either Not At All or only Slightly satisfied. Out-of-hours specialist cover was reported by less than half (49%; 656) and many General Practitioners and pharmacists lacked confidence advising about out-of-hours services. Respondents perceived there would be a significant improvement in pain control if access to medicines was greater. Those with shared records access reported significantly lower pain estimates for their caseload patients.
CONCLUSIONS: Action is required to support a greater number of nurses and pharmacists to prescribe end-of-life medicines. Solutions are also required to enable shared access to patient records across health professional groups. Coverage and awareness of out-of-hours services to access medicines needs to be improved.
BACKGROUND: Pain and symptom management is critical in ensuring quality of life for chronically ill older adults. However, while pain management and palliative care have steadily expanded in recent years, many underserved populations, such as rural older adults, experience barriers in accessing such specialty services, in part due to transportation issues. The purpose of this systematic review is to examine the specific types of transportation-related barriers experienced by rural older adults in accessing pain and palliative care.
METHODS: Studies were searched through the following 10 databases: Abstracts in Social Gerontology, Academic Search Premier, CINAHL, MEDLINE, PsycINFO, SocINDEX with Full Text, Cochrane Database of Systematic Reviews, Nursing & Allied Health Database, Sociological Abstracts, and PubMED. Studies were chosen for initial review if they were written in English, full text, included older adults in the sample, and examined pain/palliative care/hospice, rural areas, and transportation. A total of 174 abstracts were initially screened, 15 articles received full-text reviews and 8 met the inclusion criteria.
RESULTS: Findings of the 8 studies identified transportation-related issues as major access barrier to pain and palliative care among rural older adults: specifically, lack of public transportation; lack of wheelchair accessible vehicles; lack of reliable drivers; high cost of transportation services; poor road conditions; and remoteness to the closest pain and palliative care service providers.
CONCLUSION: Results suggest that rural older adults have unique transportation needs due to the urban-centric location of pain and palliative care services. Implications for practice, policy and research with older adults are discussed.
Palliative care has been defined as specialized care for patients facing serious illnesses. Despite advancements in the field and studies documenting the effectiveness of early palliative care (PC) interventions in seriously ill patients, the fields of hematologic malignancies and bone marrow transplant still lag behind of a comprehensive framework for early and effective interventions. The aim of this literature review is to analyze and discuss the possible barriers to care and delayed referrals for hematologic malignancies and bone marrow transplant patients. Using the EBSCO and PubMed databases, articles regarding PC among patients with hematologic malignancies and bone marrow transplant were analyzed. There are three main domains with its respective barriers in PC: physicians, patients and caregivers, and the healthcare system. Issues that were identified included the lack of knowledge and misconceptions about PC among physicians, patients, and caregivers, delayed referral of patients with hematologic malignancies, unrealistic treatment expectations, lack of communication between specialties, difficulties with appointment availability, geographical distance between clinics, and lack of insurance coverage for PC services. We suggest possible alternatives including obligatory continuing medical education (CME) credits, loan forgiveness, rotations during residency and fellowship training, use of informational videos and pamphlets to educate patients and caregivers, obligatory early consults despite prognosis, an algorithm to evaluate patient's needs, creating a platform within electronic medical records (EMR) systems shared by specialties, and having PC service in every cancer center. Findings suggest a need for further studies aimed towards implementing solutions to increase the early referral of patients with hematologic malignancies and bone marrow transplantation (BMT) to palliative care.
Objectives: National guidance recommends equality in access to bereavement services; despite this, awareness and availability appears inconsistent. The aim of this study was to explore availability and accessibility of bereavement services across the North-East of England and to highlight issues potentially applicable across the UK, at a time of unprecedented need due to the impact of COVID-19.
Methods: Phase 1: an eight item, web-based survey was produced. A survey link was cascaded to all GP practices (General Practitioners) in the region. Phase 2: an email was sent to all services identified in phase 1, requesting details such as referral criteria and waiting times.
Results: All 392 GP practices in the region were invited to participate. The response rate was 22% (85/392). Twenty-one per cent (18/85) of respondents reported that they do not refer patients, comments included ‘not aware of any services locally’. A total of 36 services were contacted with 72% responding with further information. Most bereavement specific support was reliant on charity-funded services including hospices, this sometimes required a pre-existing link with the hospice. Waiting times were up to 4 months.
Conclusions: Although multiple different, usually charity-funded services were identified, awareness and accessibility were variable. This survey was conducted prior to the COVID-19 pandemic, where complex situations surrounding death is likely to impact on the usual grieving process and increase the need for bereavement support. Meanwhile, charities providing this support are under severe financial strain. There is an urgent need to bridge the gap between need and access to bereavement services.
CONTEXT: Cancer patients' comfort near the end of life is often undermined by unnecessary and burdensome treatments. There is a need for more research examining racial disparities in end-of-life care, especially in regions with a history of racial discrimination.
OBJECTIVES: To examine whether Black adults received more burdensome end-of-life care than White adults in a population-based data set of cancer decedents in Louisiana, a state with a history of slavery and long-standing racial disparities.
METHODS: This was a retrospective analysis of end-of-life care from the Research Action for Health Network (REACHnet), a regional PCORI-funded database. The sample consisted of 875 White and 415 Black patients with metastatic cancer who died in Louisiana from 2011-2017. We used logistic regression to examine whether race was associated with five indicators of burdensome care in the last 30 days of life: chemotherapy use, inpatient hospitalization, intensive care unit (ICU) admission, emergency department (ED) admission, and mechanical ventilation.
RESULTS: Most patients (85.0%) received at least one indicator of burdensome care: hospitalization (76.5 %), ICU admission (44.1%), chemotherapy (29.1%), mechanical ventilation (23.0%), ED admission (18.3%). Odds Ratios (ORs) indicated that Black individuals were more likely than White individuals to be hospitalized (OR=1.66, 95% CI: 1.21 to 2.28, p=.002) or admitted to the ED (OR=1.57, 95% CI: 1.16 to 2.13, p=.004) during their last month of life.
CONCLUSIONS: Findings have implications for informing healthcare decision making near the end of life for patients, families, and clinicians, especially in regions with a history of racial discrimination and disparities.