“She would be flailing around distressed”: Addressing the hidden crisis in the home of patients being treated for cancer.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 147-147
Author(s):  
Brook Calton ◽  
Nancy Shepard ◽  
Redwing Keyssar ◽  
Nicole Thompson ◽  
Kanan Patel ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Caregiver Burden ◽  
Metastatic Cancer ◽  
Functional Decline ◽  
Severe Depression ◽  
Trial Participation ◽  
Care Needs ◽  
Risk Of Death ◽  
Home Based

147 Background: Metastatic cancer patients who have progressed on multiple lines of chemotherapy and/or have poor functional status are at risk for significant symptoms, ineffective treatments, and hospice under-utilization. Appreciating the full extent these patients’ struggles is challenging during brief oncology clinic visits. We describe Community Bridges (CB), a home-based palliative care program. Methods: The CB pilot featured a 3-person home-based palliative care MD, NP, and RN team. Patients with metastatic cancer and complex care needs ( > 3 chemotherapy lines, ECOG ≥ 3, history of missed PC clinic appointments, and/or clinical trial participation) were offered 2 months of serial home visits and phone support. Symptom severity, satisfaction, and caregiver burden were assessed. Results: 18 patients enrolled. Mean age was 66. At baseline, 79% of patients reported mild-moderate pain, 43% severe fatigue, 38% moderate-severe depression, and 65% poor-fair QOL. Half of patients died within the 2-month program or within 3 months later. 35% of patients enrolled in hospice while in CB, with a LOS of 10 days. Caregiver burden was high. 60% of patients (n = 6) and 100% of caregivers (n = 7) agreed CB provided services not otherwise available. All would recommend the program to others. Participants reported CB helped them navigate the medical system and reduce stress. Caregivers reported CB helped their loved ones regain control of care. The CB team noted key program strengths were accurately identifying the patients’ home needs, communicating findings to oncologists, and intervening quickly when patients were at the end of life and/or actively dying. Conclusions: CB met patients in their final stages, when they were experiencing heavy symptom burden, functional decline, patient/caregiver distress, and risk of death. The CB team was able to assess and respond to changing needs during key transitions points, and report the realities at home to help inform oncologists’ treatments. Although CB was not designed as a “crisis service,” it often served in that role. Home-based palliative care programs like CB may bridge the gap for patients desiring ongoing cancer treatment but in need end-of-life services.

scholarly journals Evidence on the economic value of end-of-life and palliative care interventions: a narrative review of reviews

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Xhyljeta Luta ◽  
Baptiste Ottino ◽  
Peter Hall ◽  
Joanna Bowden ◽  
Bee Wee ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cost Effectiveness ◽  
End Of Life ◽  
Resource Use ◽  
Economic Value ◽  
Healthcare Delivery ◽  
Dying Patients ◽  
Home Based ◽  
Population Type ◽  
Care Models

Abstract Background As the demand for palliative care increases, more information is needed on how efficient different types of palliative care models are for providing care to dying patients and their caregivers. Evidence on the economic value of treatments and interventions is key to informing resource allocation and ultimately improving the quality and efficiency of healthcare delivery. We assessed the available evidence on the economic value of palliative and end-of-life care interventions across various settings. Methods Reviews published between 2000 and 2019 were included. We included reviews that focused on cost-effectiveness, intervention costs and/or healthcare resource use. Two reviewers extracted data independently and in duplicate from the included studies. Data on the key characteristics of the studies were extracted, including the aim of the study, design, population, type of intervention and comparator, (cost-) effectiveness resource use, main findings and conclusions. Results A total of 43 reviews were included in the analysis. Overall, most evidence on cost-effectiveness relates to home-based interventions and suggests that they offer substantial savings to the health system, including a decrease in total healthcare costs, resource use and improvement in patient and caregivers’ outcomes. The evidence of interventions delivered across other settings was generally inconsistent. Conclusions Some palliative care models may contribute to dual improvement in quality of care via lower rates of aggressive medicalization in the last phase of life accompanied by a reduction in costs. Hospital-based palliative care interventions may improve patient outcomes, healthcare utilization and costs. There is a need for greater consistency in reporting outcome measures, the informal costs of caring, and costs associated with hospice.

Mapping end-of-life and anticipatory medications in palliative care patients using a longitudinal general practice database

2021 ◽  
pp. 1-7
Author(s):  
H. Khalil ◽  
M. Garett ◽  
A. Byrne ◽  
P. Poon ◽  
K. Gardner ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
General Practice ◽  
End Of Life ◽  
Nurse Practitioners ◽  
Hospital Admissions ◽  
Population Level ◽  
Screening Tools ◽  
Care Needs ◽  
Stakeholder Consultation

Abstract Objective End-of-life and anticipatory medications (AMs) have been widely used in various health care settings for people approaching end-of-life. Lack of access to medications at times of need may result in unnecessary hospital admissions and increased patient and family distress in managing palliative care at home. The study aimed to map the use of end-of-life and AM in a cohort of palliative care patients through the use of the Population Level Analysis and Reporting Data Space and to discuss the results through stakeholder consultation of the relevant organizations. Methods A retrospective observational cohort study of 799 palliative care patients in 25 Australian general practice health records with a palliative care referral was undertaken over a period of 10 years. This was followed by stakeholders’ consultation with palliative care nurse practitioners and general practitioners who have palliative care patients. Results End-of-life and AM prescribing have been increasing over the recent years. Only a small percentage (13.5%) of palliative care patients received medications through general practice. Stakeholders’ consultation on AM prescribing showed that there is confusion about identifying patients needing medications for end-of-life and mixed knowledge about palliative care referral pathways. Significance of results Improved knowledge and information around referral pathways enabling access to palliative care services for general practice patients and their caregivers are needed. Similarly, the increased utility of screening tools to identify patients with palliative care needs may be useful for health care practitioners to ensure timely care is provided.

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care

2012 ◽  
Vol 30 (8) ◽  
pp. 880-887 ◽  
Author(s):  
Thomas J. Smith ◽  
Sarah Temin ◽  
Erin R. Alesi ◽  
Amy P. Abernethy ◽  
Tracy A. Balboni ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
End Of Life ◽  
Clinical Oncology ◽  
Metastatic Cancer ◽  
Expert Consensus ◽  
Care Services ◽  
Palliative Care Services ◽  
Oncology Care ◽  
American Society

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.

scholarly journals Disparities in access to palliative care facilities for patients with and without cancer: A retrospective review

2021 ◽  
pp. 026921632110073
Author(s):  
Christine Lau ◽  
Christopher Meaney ◽  
Matthew Morgan ◽  
Rose Cook ◽  
Camilla Zimmermann ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Performance Status ◽  
Retrospective Chart Review ◽  
Care Needs ◽  
Care Facilities ◽  
Palliative Care Services ◽  
Low Performance ◽  
Electronic Referral

Background: To date, little is known about the characteristics of patients who are admitted to a palliative care bed for end-of-life care. Previous data suggest that there are disparities in access to palliative care services based on age, sex, diagnosis, and socioeconomic status, but it is unclear whether these differences impact access to a palliative care bed. Aim: To better identify patient factors associated with the likelihood/rate of admission to a palliative care bed. Design: A retrospective chart review of all initiated palliative care bed applications through an electronic referral program was conducted over a 24-month period. Setting/participants: Patients who apply and are admitted to a palliative care bed in a Canadian metropolitan city. Results: A total of 2743 patients made a total of 5202 bed applications to 9 hospice/palliative care units in 2015–2016. Referred and admitted cancer patients were younger, male, and more functional than compared to non-cancer patients (all p < 0.001). Referred and admitted patients without cancer were more advanced in their illness trajectory, with an anticipated prognosis <1 month and Palliative Performance Status of 10%–20% (all p < 0.001). On multivariate analysis, a diagnosis of cancer and a prognosis of <3 months were associated with increased likelihood and/or rate of admission to a bed, whereas the presence of care needs, a longer prognosis and a PPS of 30%–40% were associated with decreased rates and/or likelihood of admission. Conclusion: Patients without cancer have reduced access to palliative care facilities at end-of-life compared to patients with cancer; at the time of their application and admission, they are “sicker” with very low performance status and poorer prognoses. Further studies investigating disease-specific clinical variables and support requirements may provide more insights into these observed disparities.

A Case–Control Study Evaluating the Impact of Dedicated Palliative Care Training on Critical Care Interventions at the end of Life

2021 ◽  
pp. 082585972110374
Author(s):  
Jee Y. You ◽  
Lie D. Ligasaputri ◽  
Adarsh Katamreddy ◽  
Kiran Para ◽  
Elizabeth Kavanagh ◽  
...  
Keyword(s):  
Palliative Care ◽  
Critical Care ◽  
High Risk ◽  
End Of Life ◽  
Poor Prognosis ◽  
Medical Interventions ◽  
Risk Of Death ◽  
Before And After ◽  
The Difference ◽  
The Impact

Many patients admitted to intensive care units (ICUs) are at high risk of dying. We hypothesize that focused training sessions for ICU providers by palliative care (PC) certified experts will decrease aggressive medical interventions at the end of life. We designed and implemented a 6-session PC training program in communication skills and goals of care (GOC) meetings for ICU teams, including house staff, critical care fellows, and attendings. We then reviewed charts of ICU patients treated before and after the intervention. Forty-nine of 177 (28%) and 63 of 173 (38%) patients were identified to be at high risk of death in the pre- and postintervention periods, respectively, and were included based on the study criteria. Inpatient mortality (45% vs 33%; P = .24) and need for mechanical ventilation (59% vs 44%, P = .13) were slightly higher in the preintervention population, but the difference was not statistically significant. The proportion of patients in whom the decision not to initiate renal replacement therapy was made because of poor prognosis was significantly higher in the postintervention population (14% vs 67%, P = .05). There was a nonstatistically significant trend toward earlier GOC discussions (median time from ICU admission to GOC 4 vs 3 days) and fewer critical care interventions such as tracheostomies (17% vs 4%, P = .19). Our study demonstrates that directed PC training of ICU teams has a potential to reduce end of life critical care interventions in patients with a poor prognosis.

Pulmonary referrals to specialist palliative medicine: a survey

2021 ◽  
pp. bmjspcare-2021-003386
Author(s):  
Michael Bonares ◽  
Kenneth Mah ◽  
David Christiansen ◽  
John Granton ◽  
Andrea Weiss ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Chronic Respiratory Disease ◽  
Life Care ◽  
Care Needs ◽  
Patients With Cancer ◽  
Referral Criteria ◽  
Referral Practices ◽  
Palliative Care Needs

ObjectivesPatients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.MethodsRespirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.ResultsThe response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013).ConclusionsPossible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.

First steps: Health and social care professionals beginning to address the palliative and end of life care needs of people with diverse gender identities and sexual orientations in Lebanon

Sexualities ◽  
2020 ◽  
pp. 136346072093238
Author(s):  
Claude Chidiac
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Stigma ◽  
Life Care ◽  
Care Needs ◽  
Mena Region ◽  
Healthcare Needs ◽  
Health And Social Care ◽  
The Impact

The available evidence demonstrates that lesbian, gay, bisexual, and transgender (LGBT) people face challenges when accessing palliative care services, and receive suboptimal care at the end of life. This is mainly attributed to assumed heterosexuality, lack of knowledge and understanding of LGBT issues and specific healthcare needs, discrimination, homophobia, and transphobia. In Lebanon, legal and institutional support for LGBT individuals is minimal, and palliative care provision remains scarce and fragmented. This compounds the impact of social stigma and marginalisation, and results in unrecognised palliative and end of life care needs for the LGBT individual. This short commentary discusses the development of an LGBT palliative care workshop in Lebanon, which was the first initiative of its kind in the Middle East and North Africa (MENA) region. It also explores how this initiative has led to further developments, and how these efforts can be replicated in other countries in the MENA region.

End-of-Life Care in Patients Exposed to Home-Based Palliative Care vs Hospice Only

2019 ◽  
Vol 67 (6) ◽  
pp. 1226-1233 ◽  
Author(s):  
Susan E. Wang ◽  
In-Lu Amy Liu ◽  
Janet S. Lee ◽  
Peter Khang ◽  
Romina Rosen ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Home Based

Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum

2019 ◽  
Vol 36 (1) ◽  
pp. 22-28 ◽  
Author(s):  
Meaghann S. Weaver ◽  
Rebecca Jenkins ◽  
Christopher Wichman ◽  
Jacob E. Robinson ◽  
Meghan R Potthoff ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Curriculum Design ◽  
Phase 1 ◽  
Pediatric Palliative Care ◽  
Family Needs ◽  
Team Members ◽  
Curricular Content ◽  
Home Based ◽  
Perception Of Support

Background: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. Objectives: To develop a pediatric palliative care curriculum for inpatient nurses and adult-trained hospice teams caring for children in a rural region. Methods: Curriculum design and delivery was informed by local culture through an interdisciplinary, iterative development approach with confidence, intention, and support measured pre-, post-, and 4 months after delivery. A needs assessment was completed by pediatric nurses caring for children receiving palliative or end-of-life care to inform curricular content (phase 1). A curriculum was designed by an interdisciplinary pediatric palliative care team and piloted with nursing cohorts annually through educational conferences with monthly discussion series for 3 consecutive years (phase 2). Curricular content was then provided for 31 rural hospice team members (phase 3). Results: Self-reported confidence in caring for children increased by 1.1/10 points for adult-trained hospice team members. Mean score for intention to care for children increased by 5.2 points (sustained 5.1 points above baseline at 4 months). Perception of support in caring for children increased by 5 points (mean sustained 5.4 points above baseline at 4 months). Family needs, care goals, and symptom management were prioritized learning topics. Rural hospices previously unwilling to accept children enrolled pediatric patients in the 4 months following the conference. Conclusion: Grassroots curricular initiatives and ongoing educational mentorship can grow pediatric palliative and hospice services in rural regions.

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