Quality Palliative Care Delivery Research Articles

Palliating Serious Illness During Disasters and Public Health Emergencies.

The increase in disasters and public health emergencies in recent years is a serious public health concern. The needs of suffering victims can be multifaceted, particularly the needs of those who are from systematically marginalized populations. Palliative care nurses play a vital role in mitigating the suffering of those affected by these events. Despite the acute need, there is a lack of nurses who specialize in hospice and palliative care and generalist nurses are not sufficiently prepared to provide palliative care during disasters and public health emergencies. Nurses and nursing students should use national and global resources and training opportunities to hone their palliative care skills as well as learn self-care skills to increase their resiliency. Outcomes from research and collaborative efforts should be used to educate the future nursing workforce and advocate for equitable delivery of quality palliative care for all people who are affected by disasters and public health emergencies.

Development of a national health policy logic model to accelerate the integration of oncology and palliative care: a nationwide Delphi survey in Japan.

Despite recommendations to deliver palliative care to cancer patients and their caregivers, their distress has not been alleviated satisfactorily. National health policies play a pivotal role in achieving a comprehensive range of quality palliative care delivery for the public. However, there is no standardised logic model to appraise the efficacy of these policies. This study aimed to develop a logic model of a national health policy to deliver cancer palliative care and to reach consensus towards specific policy proposals. A draft version of the logic model and specific policy proposals were formulated by the research team and the internal expert panel, and the independent external expert panel evaluated the policy proposals based on the Delphi survey to reach consensus. The logic model was divided into three major conceptual categories: 'care-delivery at cancer hospitals', 'community care coordination', and 'social awareness of palliative care'. There were 18 and 45 major and minor policy proposals, which were categorised into four groups: requirement of government-designated cancer hospitals; financial support; Basic Plan to Promote Cancer Control Programs; and others. These policy proposals were independently evaluated by 64 external experts and the first to third Delphi round response rates were 96.9-98.4%. Finally, 47 policy proposals reached consensus. The priority of each proposal was evaluated within the four policy groups. A national health policy logic model was developed to accelerate the provision of cancer palliative care. Further research is warranted to verify the study design to investigate the efficacy of the logic model.

Complexities of Corona Virus Disease-19: The Role of Palliative Care at a Veterans Affairs Hospital.

The Corona Virus Disease-19 (COVID-19) pandemic accentuated the need for delivery of quality palliative care. We share the experience of our acute care hospital palliative care team in caring for veteran patients who died from COVID-19 and provide recommendations for palliative care teams caring for older adult populations. We conducted a retrospective chart review on 33 patients to gather characteristics data and delineate palliative care team involvement in their clinical courses. Our palliative care team participated in the care of 87.9% of patients who died from COVID-19. They were medically and psychosocially complex with 75.8% carrying at least four medical comorbidities, 87.8% presenting from an institutional facility, and 39.4% diagnosed with at least one psychiatric condition. Our results emphasize the impact of this pandemic on vulnerable populations and highlight the benefits of palliative care for support of patients, their loved ones, and the clinical teams caring for them.

Re-emerging Historical Clinical Signs: The Psychological and Physical Bystander Victims of COVID-19.

Re-emerging Historical Clinical Signs: The Psychological and Physical Bystander Victims of COVID-19.

Creating a Sustainable Palliative Care Education Conference for Healthcare Professionals.

An interprofessional conference that addressed basic palliative care knowledge and skills was implemented annually at a large, academic healthcare institution. The conference significantly influenced participant's self-perceived competencies in the delivery of quality palliative care. This conference led to a sustainable program of palliative care initiatives consisting of a yearly workshop for nurses focused on palliative care core competencies and a biennial interprofessional conference designed to facilitate networking and address significant topics in palliative care.

361P - The role of volunteers in quality palliative care delivery

BackgroundHere in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. To identify and try to solve, to the extent possible, the main difficulties in giving palliative care to the terminal cancer patients of the area. And evaluate the impact of volunteer’s direct care of palliative patients and their families. MethodsFeedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. ResultsWe carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. Since January 2018, 416 cases were studied to enquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. ConclusionsFurther research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere. Legal entity responsible for the studyThe author. FundingHas not received any funding. DisclosureThe author has declared no conflicts of interest.

P335 - The role of volunteers in quality palliative care delivery

P335 - The role of volunteers in quality palliative care delivery

The Role of Volunteers in Quality Palliative Care Delivery

Introduction: Here in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. Objective: To identify and try to solve, to the extent possible, the main difficulties in giving palliative care to the terminal cancer patients of the area. And evaluate the impact of volunteer's direct care of palliative patients and their families. Methods: Feedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. Results: We carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. Since January 2015, 496 cases were studied to inquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. Conclusions: Further research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere.

P1.02-07 The Role of Volunteers in Quality Palliative Care Delivery for Advance Lung Cancer

P1.02-07 The Role of Volunteers in Quality Palliative Care Delivery for Advance Lung Cancer

The Role Of Volunteers In Quality Palliative Care Delivery For Terminal Cancer Patient

Here in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. Pain, fatigue are the main symptoms effecting these patients. In most patients pain and other symptoms control were grossly inadequate due to lack of properly trained manpower in the rural India. However regular homecare visits by a group of social workers were of immense help in the last few months of life. NGO team was well guided by a palliative care specialist. Feedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. We carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. 496 cases were studied to enquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. Further research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere.

Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery

BackgroundNeonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitators and barriers to delivery of palliative care and also the impact of the regional location of the unit.MethodsThe study was conducted at the Townsville Hospital, which is the only regional tertiary neonatal unit in Australia. Semi-structured interviews were conducted with a purposive sample of eight neonatal nurses. Thematic analysis of the data was conducted within a phenomenological framework.ResultsSix themes emerged regarding family support and staff factors that were perceived to support the provision of palliative care of a high quality. Staff factors included leadership, clinical knowledge, and morals, values, and beliefs. Family support factors included emotional support, communication, and practices within the unit. Five themes emerged from the data that were perceived to be barriers to providing quality palliative care. Staff perceived education, lack of privacy, isolation, staff characteristics and systemic (policy, and procedure) factors to impact upon palliative care provision. The regional location of the unit also presented unique facilitators and barriers to care.ConclusionsThis study identified and explored facilitators and barriers in the delivery of quality palliative care for neonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages and amplifies facilitating factors while identified barriers are addressed or minimized, would be successful in supporting quality palliative care provision in the neonatal care setting. Study findings will be used to inform clinical education and practice.

1789 - The role of volunteers in quality palliative care delivery

Introduction: Here in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of ca...

(217) The role of volunteers in quality palliative care delivery

(217) The role of volunteers in quality palliative care delivery

Program development in palliative care: Results from the NCI Community Cancer Centers Program (NCCCP).

42 Background: Growing national attention to the need for metrics to document delivery of quality palliative care has resulted in a proliferation of measures and standards (e.g., Commission on Cancer, Quality Oncology Practice Initiative). While these standards offer benchmarks to strive for, there are few resources for programs to self-assess development of organizational infrastructure to achieve them. Methods: The NCCCP Cancer Palliative Care Matrix (PCM) is a performance measure and evaluation tool to aid palliative care program development in the community setting. The PCM was completed annually by 21 NCCCP sites from 2010 to 2013. Four domains related to quality measures are reported here. Proportional-odds logistic regression models were used to evaluate the relationship between year and level of response. Results: Variations in program development were seen in the quality domains of symptom assessment, palliative care services offered across the continuum of care, identification for palliative care services, and use of quality measures. In 2010, 13/21 sites reported that symptom assessment were not performed or performed inconsistently. By 2013, 13 sites reported consistent assessment with standardized tools, with 5 of these 13 able to review sequential patient assessment (p=0.002). Similar gains were seen in the domains of providing services across the continuum of cancer care and utilization of quality measures such as patient/provider satisfaction and service utilization (p=0.004, p<0.0001). Despite three years of effort, little change was seen in patient identification processes for palliative care services with only 6 of 21 sites in 2013, compared to 5 in 2010, reporting improvement in "upstream" patient identification regardless of cancer stage (p=0.065). Conclusions: Data suggest the utility of the PCM to evaluate process and quality outcomes in palliative care program development. In addition, identification of challenge and growth areas can be used to develop interventions to address quality performance in both clinical and research contexts.

Developing a Costing Framework for Palliative Care Services

ContextPalliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. ObjectivesThe purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. MethodsThe project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. ResultsIn this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. ConclusionA standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system.

The oncology palliative care matrix: A community-derived evaluation tool for constructing oncology palliative care programs.

253 Background: While the Institute of Medicine and the Center to Advance Palliative Care have provided the impetus for many cancer centers to build palliative care programs, guidance regarding the “nuts and bolts” of program development is lacking. The Oncology Palliative Care Matrix (OPCM) is a unique self-assessment tool designed to facilitate both program evaluation and planning for provision of oncology palliative care. Methods: The National Cancer Institute Community Cancer Centers Program (NCCCP) Palliative Care Working Group developed the OPCM to assess palliative care capacity. The tool covers 17 components associated with quality palliative care delivery (e.g., staff training, patient identification, advanced care planning, attention to spiritual care). All NCCCP sites (16 enrolled in 2007, 14 enrolled in 2010) completed the matrix in 2010 evaluating their capacity with respect to each of these domains at the following time points: baseline (entry to the NCCCP program), 2 years after NCCCP enrollment (2007 sites only), and the upcoming year (goals for the future). Results: At baseline, matrix responses reflected variability in service capacity across the 17 domains. Reported capacity for specific palliative care components improved for the 2007 sites after 2 years in NCCCP; all sites identified ‘reach’ goals for the coming year. For example, at baseline, 63% of 2007 sites and 50% of 2010 sites referred only patients at end-of-life or with advanced disease and severe symptoms for palliative care services. However, after 2 years in NCCCP, 44% of 2007 sites still referred only these patients, while 56% made referrals to palliative care for patients at all cancer stages and/or as needed during post-treatment. Further, 100% of 2007 sites and 86% of 2010 sites aspired to this expanded referral capacity in the future. Conclusions: The OPCM shows utility in the community setting for self-assessment of capacity and strategic planning to improve quality palliative care delivery. It also highlights that some components of quality care may be easier to achieve/improve (e.g., referral for palliative care) than others (e.g., regular symptom assessment, palliative care staff support).

Moving Toward Quality Palliative Cancer Care: Parent and Clinician Perspectives on Gaps Between What Matters and What Is Accessible

The National Consensus Project (NCP) published a set of standards for quality palliative care delivery. A key step before applying these guidelines to pediatric oncology is to evaluate how much families and clinicians value these standards. We aimed to determine which elements of palliative care are considered important according to bereaved parents and pediatric oncology clinicians and to determine accessibility of these elements. We administered questionnaires to 75 bereaved parents (response rate, 54%) and 48 pediatric oncology clinicians (response rate, 91%) at a large teaching hospital. Outcome measures included importance ratings and accessibility of core elements of palliative care delivery. Fifteen of 20 core elements were highly valued by both parents and clinicians (defined as > 60% of parents and clinicians reporting the item as important). Compared with clinicians, parents gave higher ratings to receiving cancer-directed therapy during the last month of life (P < .01) and involvement of a spiritual mentor (P = .03). Of the valued elements, only three were accessible more than 60% of the time according to clinicians and parents. Valued elements least likely to be accessible included a direct admission policy to hospital, sibling support, and parent preparation for medical aspects surrounding death. Parents and clinicians highly value a majority of palliative care elements described in the NCP framework. Children with advanced cancer may not be receiving key elements of palliative care despite parents and clinicians recognizing them as important. Evaluation of barriers to provision of quality palliative care and strategies for overcoming them are critical.

Enhancing palliative care in rural Australia: the residential aged care setting

The delivery of palliative care in residential aged care communities is challenging, even more so in rural areas due to workforce ageing and shortages. The objectives of the present study were to: (i) assess the needs of, and quality of palliative care delivered to residents of 16 residential aged care facilities in rural southern Australia; and (ii) identify the needs of care staff to facilitate the delivery of quality palliative care. A cross-sectional survey of all residents, assessing the degree of functional limitation, stage of palliative care, and the presence of several quality indicators was conducted. Separate focus groups of care staff and relatives of residents sought information on the quality of care delivered, perceived strengths and weaknesses of the care delivered, and education and training needs. Quality palliative care in residential aged care facilities (RACFs) is hampered by workforce shortages, with low ratios of registered nurses, limited access to general practitioners after hours, and some communication difficulties. Some staff reported low confidence in technical and psychosocial aspects of care, especially for relatives. Relatives described mostly appropriate care, while acknowledging workload constraints. Most residents whose condition was unstable, deteriorating or terminal received advance care planning, though family expectations and unwillingness to discuss end-of-life care did tend to delay planning. Unstable residents with a reasonable prognosis were more likely to be transferred to hospital than terminally ill residents. Palliative care in participating RACFs appears to be adequate. Provision of targeted education for health care providers and implementation of protocols for advance care planning and end-of life care pathways will enhance this care.

Working With a Palliative Care Team

The interdisciplinary team is fundamental to the successful delivery of quality palliative care. Ideally, the oncologist is an integral part of either the palliative care or hospice team and serves to maintain continuity of care through the end of life. In the United States, barriers can complicate the oncologist's easy integration into the hospice team as patients often remain at home. Also, there may be philosophical or clinical practice differences between oncology and palliative care at first glance. This article focuses on ways to overcome these potential obstacles and use differences in training to strengthen the team's impact. A significant part of oncology practice includes managing difficult symptoms, mitigating suffering, and discussing priorities of care--all elements of palliative medicine that oncologists perform daily. Participating on a palliative care team may be natural for oncologists, and some might elect to provide integrated palliative cancer care for patients throughout the course of their disease and at the end of life. Thus, there is a need to enrich the general oncologist's knowledge of specialized palliative medicine, as recommended by the major cancer organizations, including the American Society of Clinical Oncology and the European Society of Medical Oncology.It is important to know when to incorporate a palliative or hospice care team into the routine management of a cancer patient and what benefits these referrals can provide. Oncologists have an obligation to provide high-quality palliative care to all patients in an integrated fashion, including patients with advanced cancer enrolled in clinical trials for early therapeutics.