scholarly journals Improving Care Experiences for Patients and Caregivers at End of Life: A Systematic Review

2020 ◽  
Vol 38 (1) ◽  
pp. 84-93
Author(s):  
Denise D. Quigley ◽  
Sara G. McCleskey
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Systematic Reviews ◽  
End Of Life Care ◽  
Hospice Care ◽  
Grey Literature ◽  
Research Approach ◽  
Spiritual Support ◽  
Life Care ◽  
Care Plans

Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences. Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews. Setting: Palliative and hospice care. Population: Full-text abstraction of 84 articles, identifying 16 articles. Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report). Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results. Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.

Outpatient Palliative Care and Aggressiveness of End-of-Life Care in Patients with Metastatic Colorectal Cancer

2017 ◽  
Vol 35 (1) ◽  
pp. 166-172 ◽  
Author(s):  
Si Won Lee ◽  
Hyun Jung Jho ◽  
Ji Yeon Baek ◽  
Eun Kyung Shim ◽  
Hyun Mi Kim ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Emergency Department ◽  
Palliative Care ◽  
Metastatic Colorectal Cancer ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Emergency Department Visits ◽  
Life Care ◽  
The Impact

Background: Palliative care in outpatient setting has been shown to promote better symptom management and transition to hospice care among patients with advanced cancer. Nevertheless, specialized palliative care is rarely provided at cancer centers in Korea. Herein, we aimed to assess aggressiveness of end-of-life care for patients with metastatic colorectal cancer according to the use of outpatient palliative care (OPC) at a single cancer center in Korea. Methods: We performed a retrospective medical record review for 132 patients with metastatic colorectal cancer who died between 2011 and 2014. Fifty patients used OPC (OPC group), while 82 patients did not (non-OPC group). Indicators of aggressiveness of end-of-life care including chemotherapy use, emergency department visits, hospitalization, and utilization of hospice care were analyzed according to the use of OPC. Results: More patients in the OPC group were admitted to hospice than those in the non-OPC group (32% vs 17%, P = .047). The mean of inpatient days within 30 days of death was shorter for the OPC group than the non-OPC group (4.02 days vs 7.77 days, respectively, P = .032). There were no differences in the proportions of patients who received chemotherapy and visited the emergency department within 30 days from death. Conclusion: Among patients with metastatic colorectal cancer, OPC was associated with shorter inpatient days near death and greater hospice utilization. Further prospective studies are needed to evaluate the impact of OPC on end-of-life care in Korea.

scholarly journals Decision making in the end-of-life care of patients who are terminally ill with cancer – a qualitative descriptive study with a phenomenological approach from the experience of healthcare workers.

2021 ◽  
Author(s):  
Angela Luna-Meza ◽  
Natalia Godoy-Casasbuenas ◽  
José Andrés Calvache ◽  
Eduardo Diaz ◽  
Fritz Gempeler ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
End Of Life Decisions ◽  
Care Plans ◽  
Qualitative Descriptive ◽  
Imminent Death

Abstract Background: In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients.Methods: Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan. Results: When making decisions regarding end-of-life care, professionals consider: 1. Patient’s clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional conditions: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent unclarity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not patients directly for their preferences. Fear of confrontation with family members and lawsuits leads doctors to carrying out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians have access to opioid medications, barriers to their application are largely in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare.Conclusions: to improve end-of-life decision making, Colombian physicians and patients need to openly discuss wishes, needs and care options and prepare caregivers. Promotion of palliative care education and development of palliative care centres and home care plans is necessary to facilitate access to end-of-life care. Patients and caregivers’ perspectives are needed to complement physicians’ perceptions and practices. Key Message: The results highlight the importance of improving access to end-of-life care in Colombia, and diminish the “denial of imminent death” among patients and caregivers to facilitate end-of-life discussions and shared decisions; interventions to prepare caregivers and promote home care.

ICU utilization among oncology patients at the end of life.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 118-118
Author(s):  
Jennifer Hong ◽  
Christine Kurian ◽  
Jared Minetola ◽  
Valerie Pracilio Csik ◽  
Adam Binder
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Academic Medical Center ◽  
Cancer Type ◽  
Life Care ◽  
Oncology Patients ◽  
Code Status ◽  
Care Plans

118 Background: Patients with advanced cancer have high rates of hospitalizations as a result of their oncologic care. Furthermore, these patients receive aggressive end of life care despite evidence that aggressive end of life care does not improves quality of life or outcomes for patients and is associated with worse bereavement adjustment for caregivers. The American Society of Clinical Oncology has endorsed several indicators of aggressive end of life care, but most striking is intensive care unit (ICU) admission within 30 days before death. Methods: Adult oncology patients who died within 30 days of hospitalization and/or admitted to the ICU from 10/2018-3/2019 at an academic medical center were evaluated. The cohort was identified using ICD-10 codes, EMR systems support, and manual chart review. Patient demographic data, cancer type, stage, line of therapy, code status, advanced care plan, prior admissions as well as other clinical characteristics were collected. Results: In total, 180 patients were included for analysis; 106 of which were admitted to the ICU. Of patients admitted to the ICU, 58 patients died (54.7%). Mean ECOG performance status was 1.24. Average number of admissions 3 and 6 months prior to death was 0.71 and 1.26. Thirty six percent of patients were on first or second-line chemotherapy. 41.37% of patients who died in the ICU had prolonged length of stay (>1 week). Only 34.48% were known to palliative care prior to admission and 12.06% of patients had advanced care plans in place at time of hospitalization. Palliative care was consulted on 32.75% of patients who died in the ICU. Ninety Three percent had their code status changed prior to death. Conclusions: Despite established recommendations to support otherwise, at our institution there continues to be high utilization of ICU care near the end of life. Previous admissions and ECOG status are poor predictors of death in this cohort. The majority of patients had relapsed and refractory disease. There was a low rate of advanced care planning or palliative care involvement prior to the patient’s hospitalization. Further interventions are underway to improve end of life planning in order to improve our quality of care.

Implementation and evaluation of a palliative and end-of-life care peer-learning initiative

2021 ◽  
Vol 30 (4) ◽  
pp. 244-249
Author(s):  
Michelle Buono
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Peer Learning ◽  
Research Approach ◽  
Life Care ◽  
Hospice Nurses ◽  
Action Research Approach ◽  
Level Of Training ◽  
Enhance Patient Care

Background: Palliative and end-of-life care skills for nurses in acute care are dependent on the level of training received. Hospices are seen as fountains of knowledge in end-of-life and complex care issues. Aim: This study evaluated peer learning between registered nurses (RNs) at West Suffolk Foundation Trust and St Nicholas Hospice Care. Six acute and six hospice nurses spent 1 week each, over a 6-month period, shadowing in the opposite of their usual acute or hospice setting. Method: The study used an action research approach. Reflective diaries, questionnaires and evaluation forms provided feedback, giving nursing practice perspectives on learning gained during the shadowing process. Findings: Key features were improved knowledge in medications for symptom management in end of life; understanding holistic assessments to enhance patient care; key competencies completed. Conclusion: This study led to the development of the West Suffolk Foundation Trust 2-day shadowing model offering access to end-of-life care learning.

scholarly journals End-of-Life Care in Latin America

2017 ◽  
Vol 3 (3) ◽  
pp. 261-270 ◽  
Author(s):  
Enrique Soto-Perez-de-Celis ◽  
Yanin Chavarri-Guerra ◽  
Tania Pastrana ◽  
Rossana Ruiz-Mendoza ◽  
Alexandra Bukowski ◽  
...  
Keyword(s):  
Palliative Care ◽  
Latin America ◽  
End Of Life ◽  
End Of Life Care ◽  
Current Status ◽  
Life Care ◽  
Middle Income ◽  
Middle Income Countries ◽  
Care Plans ◽  
Low And Middle Income

Cancer has become a global pandemic with disproportionately higher mortality rates in low- and middle- income countries, where a large fraction of patients present in advanced stages and in need of end-of-life care. Globally, the number of adults needing end-of-life care is greater than 19 million, and up to 78% of these patients are living in low- and middle- income countries. In the Americas alone, more than one million people are in need of end-of-life care, placing an enormous burden on local health systems, which are often unprepared to meet the challenge presented by this complex patient population. In Latin America, cancer care is characterized by the presence of vast inequalities between and within countries, and the provision of end-of-life care is no exception. Disparities in access to advanced care planning, with a lack of provision of adequate palliative care and pain medication, are common in the region. These shortcomings are related in large part to inadequate or inappropriate legislation, lack of comprehensive national palliative care plans, insufficient infrastructure, lack of opportunities for clinical training, unreliable reporting of data, and cultural barriers. This report reviews the current status of end-of-life care in Latin America, focusing on identifying existing deficiencies and providing a framework for improvement.

scholarly journals Palliative care for homeless and vulnerably housed people: scoping review and thematic synthesis

2021 ◽  
pp. bmjspcare-2021-003020
Author(s):  
Richard James ◽  
Kate Flemming ◽  
Melanie Hodson ◽  
Tammy Oxley
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Service Providers ◽  
Grey Literature ◽  
Evidence Base ◽  
Life Care ◽  
Thematic Synthesis ◽  
Wide Range

IntroductionPeople who are homeless or vulnerably housed are subject to disproportionately high risks of physical and mental illness and are further disadvantaged by difficulties in access to services. Research has been conducted examining a wide range of issues in relation to end-of-life care for homeless and vulnerably housed people, however, a contemporary scoping review of this literature is lacking.ObjectivesTo understand the provision of palliative care for people who are homeless or vulnerably housed from the perspective of, and for the benefit of, all those who should be involved in its provision.DesignScoping review with thematic synthesis of qualitative and quantitative literature.Data sourcesMEDLINE, Embase, PsycINFO, Social Policy and Practice and CINAHL databases were searched, from inception to May 2020. Citation chasing and manual searching of grey literature were also employed.ResultsSixty-four studies, involving 2117 homeless and vulnerably housed people were included, with wide variation in methodology, population and perspective. The thematic synthesis identified three themes around: experiences, beliefs and wishes; relationships; and end-of-life care.ConclusionDiscussion highlighted gaps in the evidence base, especially around people experiencing different types of homelessness. Existing evidence advocates for service providers to offer needs-based and non-judgemental care, for organisations to use existing assets in co-producing services, and for researchers to address gaps in the evidence base, and to work with providers in transforming existing knowledge into evaluable action.

Influence of advance directives on reducing aggressive measures during end-of-life cancer care: A systematic review

2020 ◽  
pp. 1-7
Author(s):  
Lillian Ponchio e Silva Marchi ◽  
Martins Fideles dos Santos Neto ◽  
Júlia de Pauli Moraes ◽  
Carlos Eduardo Paiva ◽  
Bianca Sakamoto Ribeiro Paiva
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advance Directives ◽  
End Of Life Care ◽  
Hospice Care ◽  
Assessment Tools ◽  
Life Care ◽  
Important Indicator

Abstract Context Although the literature recognizes the participation of patients in medical decisions as an important indicator of quality, there is a lack of consensus regarding the influence of advance directives (ADs) on reducing aggressive measures during end-of-life care involving cancer patients. Objective A systematic review was conducted to analyze the influence of ADs on reducing aggressive end-of-life care measures for cancer patients. Method We searched the Medline, Embase, Web of Science, and Lilacs databases for studies published until March 2018 using the following keywords, without language restrictions: “advance directives,” “living wills,” “terminal care,” “palliative care,” “hospice care,” and “neoplasms.” Article quality was assessed using study quality assessment tools from the Department of Health and Human Services (NHLBI). Results A total of 1,489 studies were identified; 7 met the inclusion criteria. The studies were recently published (after 2014, 71.4%). Patients with ADs were more likely to die at the site of choice (n = 3) and received less chemotherapy in the last 30 days (n = 1). ADs had no impact on intensive care unit admission (n = 1) or hospitalization (n = 1). One study found an association between ADs and referral to palliative care, but other did not find the same result. Significance of results Of the seven articles found, four demonstrated effects of ADs on the reduction in aggressive measures at the end of life of cancer patients. Heterogeneity regarding study design and results and poor methodological quality are challenges when drawing conclusions.

scholarly journals Decision making in the end-of-life care of patients who are terminally ill with cancer – a qualitative descriptive study with a phenomenological approach from the experience of healthcare workers

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Angela Luna-Meza ◽  
Natalia Godoy-Casasbuenas ◽  
José Andrés Calvache ◽  
Eduardo Díaz-Amado ◽  
Fritz E. Gempeler Rueda ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Workers ◽  
Palliative Sedation ◽  
Life Care ◽  
End Of Life Decisions ◽  
Care Plans ◽  
Qualitative Descriptive

Abstract Background In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients. Methods Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan. Results When making decisions regarding end-of-life care, professionals consider: 1. Patient’s clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional skills and expertise: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent ambiguity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not ask patients directly for their preferences. Fear of confrontation with family members and lawsuits leads healthcare workers to carry out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in the absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians have access to opioid medications, barriers to their application are largely in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare. Conclusions To improve end-of-life decision making, Colombian healthcare workers and patients need to openly discuss wishes, needs and care options and prepare caregivers. Promotion of palliative care education and development of palliative care centres and home care plans is necessary to facilitate access to end-of-life care. Patients and caregivers’ perspectives are needed to complement physicians’ perceptions and practices.

Fact file 9: Palliative care

2017 ◽  
Author(s):  
Daisy Fancourt
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Improve Quality ◽  
Spiritual Support ◽  
Life Care ◽  
Seriously Ill Patients ◽  
Seriously Ill

Palliative care is support for seriously ill patients and their families. The aim of palliative care is to minimize pain and discomfort as much as possible and provide psychological, social, and spiritual support. An important part of palliative care is end-of-life care, which aims to improve quality of life as much as possible while patients are alive and then help them to die with dignity....

scholarly journals Changes in 24-Hour Palliative Care Telephone Advice Service after the Introduction of Discharged End-of-Life Patients’ Care Plans

2020 ◽  
Vol 17 (16) ◽  
pp. 5876
Author(s):  
Ming-Hwai Lin ◽  
Hsiao-Ni Chen ◽  
Tzeng-Ji Chen
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Plan ◽  
Life Care ◽  
Care Plans ◽  
Telephone Advice ◽  
Significant Difference ◽  
Advice Service ◽  
At Home

Background: To provide a better quality of death for patients at the end of life who choose to die at home and their families, the hospice care team at Taipei Veterans General Hospital has promoted an personalized discharged end-of-life care plan since the initial of 2018. Methods: This study is a retrospective analysis of administrative data. All incoming calls of the 24-hour specialist palliative care emergency telephone advice service records were analyzed. Personal information of any callers or consultants was not registered in the content. Results: A total of 728 telephone consultations was registered during the study period. The content of the consultation of different callers was significantly different (p < 0.001). The decrease in the number of calls from the patients who were discharged from the hospice ward had the largest reduction in proportion, from 80 (19.0%) to 32 (10.5%), There was a significant difference in the identity of the callers between 2017 and 2018 (p = 0.025). The proportion of consultation calls for the management of near-death symptoms significantly reduced from 15.6% to 10.5% (p = 0.027). Conclusions: Though the evidence from this study is not enough to support that the personalized discharged end-of-life care plan might reduce the frequency of dialing 24-hour hotlines by the family members of discharged terminally ill patients. For patients who choose to die at home and their families, the hotlines provide a 24-hour humane support. Thus, we need to conduct relevant research to determine whether the service of this dedicated line meets the needs of patients and their families in the terminal stage.

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