Access to palliative care services for limited English proficient patients with advanced NSCLC.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 99-99
Author(s):  
Bonnie Leung ◽  
Selina Wong ◽  
Kiran Malli ◽  
Cheryl Ho

99 Background: More than a quarter of people living in British Columbia, Canada speak languages other than English in their homes. Immigrants often encounter communication challenges with their health care providers (HCPs), have poor health literacy, and have a limited understanding on navigating the health care system. NSCLC patients with limited English proficiency (LEP) may receive less palliative care services despite high symptom burden and significant needs due to these factors. The study goals were to observe the difference in access to community palliative home care (CPHC) and rate of completing a Do Not Resuscitate (DNR) form between NSCLC patients who are English proficient (EP) and LEP. Methods: All patients with advanced NSCLC referred to BC Cancer–Vancouver Centre in 2016 and received medical care were included (N=176). Patients seen with a medical interpreter were considered to be LEP. Demographics and clinical information were collected retrospectively. UVA using X2 test and Fisher’s exact test were used to compare EP and LEP patients. Mann-Whitney test was used to compare the median time from CPHC referral and signed DNR to death between EP and LEP patients. Results: Language of communication: English 65%, Cantonese 22%, Mandarin 6%, Korean 1%, Tagalog 1%, and other 5%. Baseline characteristics: median age 69 EP vs 76 LEP, female 44% EP vs 65% LEP, non-squamous 68% EP vs 72% LEP and squamous 14% EP vs 6% LEP. There was no difference in the rate of CPHC referral (87% EP vs 80% LEP, p=0.342) and signed DNR form (92% EP vs 89% LEP, p=0.549). The median time from CPHC referral to death was 10 weeks EP vs 15 weeks LEP (p=0.039). The median time from signed DNR to death was 5 weeks EP vs 6 weeks LEP (p=0.806). There was no statistically significant difference in location of death between the two groups: acute care 20% EP vs 24% LEP, home 27% EP vs 13% LEP, hospice 36% EP vs 39% LEP, and tertiary palliative care unit 17% EP vs 24% LEP (p=0.251). Conclusions: EP and LEP patients with NSCLC had similar rates of CPHC service referrals and end of life planning. This suggests assistance of medical interpreters at the time of oncology visits help message delivery between LEP patients and HCPs. LEP patients had earlier referrals to CPHC prior to death which may reflect an enhanced awareness and effort by HCPs to have earlier conversations with patients who may have language and cultural barriers with discussing goals of care. Good communication improves patients and their family’s understanding of the goals and scope of palliative care services and allow HCPs to better understand the patients’ wishes.

Author(s):  
Kimberly S. Johnson ◽  
Ramona L. Rhodes

This chapter examines how race or ethnicity affects access to, and the quality of, palliative care by focusing on the experience of African Americans and Hispanics. More specifically, it considers how cultural beliefs, values, and preferences may influence care. It begins by looking at racial and ethnic disparities that exist throughout the health-care continuum, from disease prevention, early diagnosis, and curative treatment, to communication and pain management, lower rates of advance care planning, and lower utilization of hospice and palliative care services. It then explores the preferences of African Americans and Hispanics when it comes to end-of-life care, as well as the role of spirituality and faith in how they cope with illness. The chapter concludes by suggesting strategies and future directions for health-care providers, organizations, policymakers, and researchers on how to improve care for patients of diverse racial and ethnic backgrounds.


2019 ◽  
Vol 24 (2) ◽  
pp. 108-115 ◽  
Author(s):  
Arlanna Pugh ◽  
Heather Castleden ◽  
Melissa Giesbrecht ◽  
Colleen Davison ◽  
Valorie Crooks

Objectives In Canada, the rural elderly population is increasing in size, as is their need for palliative care services in these settings. This analysis aims to identify awareness-associated barriers to delivering rural palliative care services, along with suggestions for improving service delivery from the perspective of local health care providers. Methods A total of 40 semi-structured interviews with various formal and informal health care providers were conducted in four rural and/or remote Canadian communities with limited palliative care resources. Interview data were thematically coded using Penchansky and Thomas’ five dimensions of access (i.e. availability, (geographic) accessibility, accommodation, acceptability and affordability). Saurman’s recently added sixth dimension of access – awareness – was also identified while coding and subsequently became the primary focus of this analysis. Results Identified barriers to palliative care awareness and suggestions on how to enhance this awareness, and ultimately palliative care delivery, corresponded with three key themes arising from the data: limited palliative care knowledge/education, communication and coordination. Participants recognized the need for more palliative care education, open lines of communication and better coordination of palliative care initiatives and local resources in their communities. Conclusions These findings suggest that identifying the barriers to palliative care awareness in rural communities may be foundational to addressing barriers to the other five dimensions of access. A thorough understanding of these three areas of awareness knowledge, communication and coordination, as well as the connections between them, may help enhance how rural palliative care is delivered in the future.


2012 ◽  
Vol 30 (8) ◽  
pp. 880-887 ◽  
Author(s):  
Thomas J. Smith ◽  
Sarah Temin ◽  
Erin R. Alesi ◽  
Amy P. Abernethy ◽  
Tracy A. Balboni ◽  
...  

Purpose An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. Clinical Context Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available. Recent Data Seven published RCTs form the basis of this PCO. Provisional Clinical Opinion Based on strong evidence from a phase III RCT, patients with metastatic non–small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research. NOTE. ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.


2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Leslye Rojas-Concha ◽  
Maiken Bang Hansen ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold

An amendment to this paper has been published and can be accessed via the original article.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 73-73 ◽  
Author(s):  
Anne-Tove Brenne ◽  
Anne Kari Knudsen ◽  
Cinzia Brunelli ◽  
Vidar Halsteinli ◽  
Stein Kaasa

73 Background: Palliative care early in the cancer disease trajectory may improve health related quality of life for patients and their families. Collaboration between community and specialist health care professionals is paramount to achieve optimal cancer care. The objective of this study is to develop and to implement this model into our health care system.The target population is cancer patients with metastatic and/ or loco-regional disease. Methods: The study takes place in a rural district of 13 municipalities with a local hospital (Orkdal) in Mid Norway. It is designed as a prospective controlled observational pre- post cohort study with four main interventions: 1. Development and implementation of a standardized care pathway across health care levels, 2. Educational programme for health care professionals, 3. Information about cancer and palliative care to the public, 4.Information,education and support to family members.Outcomes are patient’s time spent at home, family member’s health related quality of life, improvement of health care providers’ knowledge and skills and distribution of health care service use. Results: A standardized care pathway for all palliative cancer patients including home care, care in nursing homes, and specialist care in hospitals (in- and outpatients) is developed. It focuses on access to palliative care services, transfer of medical data, and symptom assessment. The educational program consists of two parts; one to inform about the project and the standardized care pathway, and one to improve competence and skills in cancer palliative care. To the general public, information regarding chemo- and radiotherapy, symptom diagnosis and treatment and palliative care services in general is given. Conclusions: A total integrated model to improve care for cancer patients was developed focusing on collaboration between community and specialist health care, and on early integration of palliative care in the traditional cancer care trajectory. Improved care for cancer patients and their families in the Orkdal region to equal costs is expected. The Orkdal Model may be applied in other regions and for other chronic diseases. Clinical trial information: NCT02170168.


2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 63-63
Author(s):  
David Christopher Currow ◽  
Hiromichi Matsuoka ◽  
Samuel Allingham ◽  
Belinda Fazekas ◽  
Linda Brown ◽  
...  

63 Background: There are no agreed national nor international criteria for referral to palliative care. Key population characteristics have been defined to aid the generalizability of research findings in palliative care clinical studies. To codify differences in key demographic factors between patients with cancer participating in the Australian national Cancer Supportive Care Clinical Studies Collaborative (CSCCSC) phase III symptom control studies and the population referred to other Australian palliative care services. Methods: This study compares two contemporaneous consecutive cohorts generated through clinical trial participation and the national palliative care clinical quality improvement registry in Australia. Age, sex, cancer diagnosis, language, and socio-economic status were compared. Results: Cohorts were people with cancer: enrolled in CSCCSC phase III clinical studies (n=902; 17 sites); and registered by the Australian national Palliative Care Outcomes Collaboration (PCOC; n=75,240; 117 sites). Participants in CSCCSC studies were younger than those of PCOC (median 71 (IQR 62, 79) versus median 73 (IQR 63, 81); p=0.003 respectively). There was no significant difference in sex (p=0.483). Patients who spoke English accounted 95.0% of enrollees in the CSCCSC group and 92.2% in the PCOC group (p = 0.004). Clinical study participants had higher socioeconomic status that the PCOC group (p=0.022). Conclusions: Overall, the slightly different demographic patterns are reflective of the differences often seen between phase III trials and the populations to whom the results will be applied. Age differences particularly need to be taken into account when considering the best way to apply each study’s findings.


2013 ◽  
Vol 2 (2) ◽  
pp. 5-15
Author(s):  
Riawati Jahja

Trials have demonstrated improvement in patients’ quality of life through palliative care services (PCS). However, many of these trials are limited by their research methodologies. PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL) were searched to conduct a systematic review of review articles related to PCS from January 2001 to December 2011. The paper examined evidence from studies on PCS that aimed to improve elderly patients’ end-of-life outcomes by i) systematically reviewing literature on models of palliative care (PC) delivery patients received; ii) exploring methodological issues surrounding recruitment of the patients, implementation of the studies and comparison of health care services; and iii) addressing the costs of care with/without a palliative program. Seventeen trials and three observational studies were selected from nine systematic review articles. Overall, early introduction of PC to patients following identification of their life-limiting conditions and needs re-quires an organized and coordinated care approach to ensure accessibility of these services. The ideal system that offers the potential of improving patients’ quality of life is one that is integrated, interdisciplinary and holistic. Dying is commonly institutionalized; however, providing outreach programs that allow patients to die at their place of wish, such as domiciliary care, offers the potential of addressing the issue of ever-increasing health-care expenditure for the aged. However, further investigation is needed to evaluate the cost effectiveness of these programs. Methodological problems and ethical issues surrounding the study of terminally-ill patients necessitate that researchers use a combination of observational studies and surveillance system over time. DOI: http://dx.doi.org/10.3329/seajph.v2i2.15937 South East Asia J Public Health | Jul-Dec 2012 | Vol 2 Issue 2 | 5-15


Author(s):  
David C. Currow ◽  
Stein Kaasa

Hospice and palliative care services have developed in very different ways around the world. Most have been built on the momentum of visionary clinicians and funders who have responded to perceived needs from health-care providers, patients, families, and communities rather than in response to well-formed national policies with an adequately funded planning and development phase. This chapter describes the work that is being done at pan-national, national, and sub-national levels to create effective policies that can further the key work of hospice/palliative care, often after a large number of apparently unconnected local services have been well established. The chapter highlights that there are particular challenges in forming public policy on hospice/palliative care, especially the end-of-life component, and notes the importance of ‘patients’ voices’-the voice of the community which helps to inform health policies including end-of-life care. The chapter ends by describing a variety of country-specific and World Health Organization policy documents and legislation.


2004 ◽  
Vol 5 (3) ◽  
pp. 151-157 ◽  
Author(s):  
Eileen Hanley

This article addresses the increasing interest in end of life care and the need for improving access to palliative care services in patients/families served by the home care industry. The author discusses factors leading to this growing demand as well as some of the recent research conducted in the field of palliative care. The benefits of and underutilization of hospice services are discussed. The author addresses a variety of options for home care providers to consider expanding access to palliative care services including recent changes in regulation that allow for collaboration with Medicare certified hospice programs. A discussion of key topics to include in staff development initiatives related to palliative care is included as are education and clinical practice resources.


2016 ◽  
Vol 8 (4) ◽  
pp. 428-430 ◽  
Author(s):  
Michael Macfarlane ◽  
Emma Carduff

ObjectivesReferral to, and usage of, specialist palliative care (SPC) services are not equitable and social deprivation may be a contributory factor in this. Deprivation may also affect the place of death of patients with cancer. No study, however, has investigated whether inequalities persist following referral to SPC services. This study investigates whether place of death varies by deprivation for patients known to SPC services.MethodsPlace of death and postcode were obtained for 485 consecutive patients known to SPC services within NHS Lothian who died in 2014–2015. From this information, deprivation quintile (DQ) was derived using the Scottish Index of Multiple Deprivation (SIMD) database and place of death compared between DQs and analysed statistically.ResultsAcross all DQs, patients known to SPC services were more likely to die in the hospice than at home or in hospital. There was, however, a small but statistically significant difference in the ratio of hospital deaths compared to hospice deaths between the DQs, with higher death rates in hospital for the most deprived compared to the least deprived and higher death rates in the hospice for the least deprived compared to the most deprived.ConclusionsThis study suggests that even after referral to specialist palliative care services variation in place of death by deprivation persists. Greater deprivation is associated with increased likelihood of dying in hospital and decreased likelihood of dying in a hospice, although no difference was noted for home deaths.


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