Navigating the Intangible: Working With Nonphysical Suffering on the Front Lines of Palliative Care

2018 ◽  
Vol 81 (4) ◽  
pp. 670-684 ◽  
Author(s):  
Maxxine Rattner
Keyword(s):  
Palliative Care ◽  
Exploratory Study ◽  
Clinical Care ◽  
Care Providers ◽  
Education Training ◽  
Training And Support ◽  
The Impact ◽  
Systemic Barriers

While relieving suffering is palliative care’s primary aim, how palliative care providers navigate patients’ nonphysical suffering in their day-to-day work and the impact of working with nonphysical suffering on the clinician have been understudied. This exploratory study aims to begin to fill this gap in the literature. Results revealed that palliative care clinicians face several challenges in their efforts to navigate patients’ nonphysical suffering in their day-to-day work, including (a) the intangible nature of nonphysical suffering, (b) systemic barriers (e.g., lack of time and adequate resources), (c) clinician helplessness or suffering, and (d) a lack of education, training, and support for clinicians specific to their work with patients’ nonphysical suffering. Study outcomes have the potential to improve frontline clinical care with patients and support and education for clinicians.

Toward proven and prioritized quality measures: Which ASCO QOPI and other supportive care measures associate with improved quality of life (QOL)?

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 165-165
Author(s):  
Arif Kamal ◽  
Janet Bull ◽  
Amy Pickar Abernethy
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Supportive Care ◽  
Cancer Patients ◽  
Clinical Care ◽  
Performance Status ◽  
Quality Measures ◽  
Well Being ◽  
Care Quality ◽  
The Impact

165 Background: An expanding array of quality measures, including the Quality Oncology Practice Initiative (QOPI) metrics, is being developed for oncology. To date, evidence demonstrating the impact of each metric on outcomes, ultimately aiding in prioritization of individual measures, remains immature. We investigated the relationship between conformance with quality measures and higher patient QOL among cancer patients receiving palliative care. Methods: A comprehensive systematic review of PUBMED and the gray literature (1995-2012) identifed all described supportive care quality measures. Patients receiving palliative care in 4 community-based programs were entered into a longitudinal quality registry; analyses focused on cancer patients registered between 6/08-10/11. To find predictors of higher QOL, conformance cohorts were examined for demographic variables, performance status (measured by palliative performance scale, PPS) and provider estimation of prognosis and included in univariate and multivariate regression. Results: The systematic review yielded 303 quality measures. Of these, 18 measures, representing components of the ASCO QOPI, Hospice PEACE, and Cancer-ASSIST measure sets, were evaluable using registry data. 460 cancer patients were included. 60% of patients had weeks to 6 months expected prognosis. Among QOPI measures, conformance with two measures was significantly associated with better QOL: constipation assessment at time of narcotic prescription and emotional well-being assessment (both p<0.05). Other significant findings were conformance with screening of symptoms at first visit (p=0.017), timely treatment for uncontrolled dyspnea (p=0.005), and assessment of fatigue (p=0.007). In a multivariate model predicting higher QOL, measures involving emotional well-being assessment (OR 1.60; p=0.026) and screening of symptoms (OR 1.74, p=0.008) remained significant. Conclusions: Clinical care that conforms to quality measures reflecting regular symptom and emotional assessment is significantly associated with better patient experiences (QOL) and should be prioritized in quality assessment efforts.

scholarly journals Caring for the Palliative Care amidst COVID-19 Pandemic

2020 ◽  
Vol 5 (S1) ◽  
pp. 243-245
Author(s):  
Mamak Tahmasebi ◽  
Behdad Gharib ◽  
Meisam Sharifzadeh
Keyword(s):  
Palliative Care ◽  
Family Support ◽  
Good Control ◽  
Disease Therapy ◽  
Education Training ◽  
The Moment ◽  
Training And Support ◽  
At Home

With or without COVID-19, “palliative care” is about basics. 1) Good control of symptoms due either to the disease or treatment, 2) Good decisions, especially when it becomes clear that control of the disease is no longer possible, with trying to help the patient do what means most to them, 3) Patient/family support in every phase of the illness from diagnosis throughout all phases of care until the moment of death, and 4) Care of bereaved person. Palliative care, the care of patients (adults or children) with probably fatal illnesses, whether they are still having anti disease therapy or not must occur in many places, many wards, clinics, at home, and even virtual. The COVID-19 crisis has a serious impact on patients’ care, but with respect for every person, and a great deal of education, training and support of staff, we would overcome it successfully.

scholarly journals Stakeholder Perspectives on the Biopsychosocial and Spiritual Realities of Living With ALS: Implications for Palliative Care Teams

2019 ◽  
Vol 36 (10) ◽  
pp. 851-857 ◽  
Author(s):  
Klaudia Kukulka ◽  
Karla T. Washington ◽  
Raghav Govindarajan ◽  
David R. Mehr
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Quantitative Data ◽  
Well Being ◽  
Social Needs ◽  
Care Providers ◽  
Structured Interviews ◽  
Palliative Care Teams ◽  
The Impact

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS. Objective: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Methods: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS. Results: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease. Conclusion: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.

scholarly journals The impact of non-medical reading on clinician burnout: a national survey of palliative care providers

2019 ◽  
Vol 8 (4) ◽  
pp. 428-435 ◽  
Author(s):  
Daniel Marchalik ◽  
Ariel Rodriguez ◽  
Amalia Namath ◽  
Ross Krasnow ◽  
Simone Obara ◽  
...  
Keyword(s):  
Palliative Care ◽  
National Survey ◽  
Care Providers ◽  
The Impact

scholarly journals Palliative Care Development in Africa: Lessons From Uganda and Kenya

2018 ◽  
pp. 1-10 ◽  
Author(s):  
Brooke A. Fraser ◽  
Richard A. Powell ◽  
Faith N. Mwangi-Powell ◽  
Eve Namisango ◽  
Breffni Hannon ◽  
...  
Keyword(s):  
Palliative Care ◽  
Health Care Providers ◽  
National Health ◽  
Unmet Need ◽  
National Health System ◽  
Published Data ◽  
Care Providers ◽  
African Countries ◽  
The Impact ◽  
Care Development

Purpose Despite increased access to palliative care in Africa, there remains substantial unmet need. We examined the impact of approaches to promoting the development of palliative care in two African countries, Uganda and Kenya, and considered how these and other strategies could be applied more broadly. Methods This study reviews published data on development approaches to palliative care in Uganda and Kenya across five domains: education and training, access to opioids, public and professional attitudes, integration into national health systems, and research. These countries were chosen because they are African leaders in palliative care, in which successful approaches to palliative care development have been used. Results Both countries have implemented strategies across all five domains to develop palliative care. In both countries, successes in these endeavors seem to be related to efforts to integrate palliative care into the national health system and educational curricula, the training of health care providers in opioid treatment, and the inclusion of community providers in palliative care planning and implementation. Research in palliative care is the least well-developed domain in both countries. Conclusion A multidimensional approach to development of palliative care across all domains, with concerted action at the policy, provider, and community level, can improve access to palliative care in African countries.

The impact of routine ESAS use on receiving palliative care services: Results of a population-based retrospective matched cohort analysis.

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 191-191 ◽  
Author(s):  
Lisa Catherine Barbera ◽  
Rinku Sutradhar ◽  
Craig Earle ◽  
Nicole Mittmann ◽  
Hsien Seow ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Clinical Care ◽  
Symptom Assessment ◽  
Assessment System ◽  
Matched Cohort ◽  
Risk Of Death ◽  
Care Services ◽  
Palliative Care Services ◽  
The Impact

191 Background: In 2007 Cancer Care Ontario began standardized symptom assessment as part of routine clinical care using the Edmonton Symptom Assessment System (ESAS). The purpose of this project was to evaluate the impact of this program on referrals to palliative care. We hypothesized that patients exposed to ESAS would be more likely to be referred. Methods: A retrospective matched cohort study was conducted to examine the impact of ESAS screening on the initiation of palliative care services provided by physician or homecare nurse among newly diagnosed cancer patients in Ontario, Canada. The study included all adult patients who were diagnosed with cancer between 2007 and 2015. Exposure was defined as completing ≥1 ESAS during the study period. Using four hard matched variables and propensity-score matching with 14 variables, cancer patients exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or the end of study at Mar 31, 2017. Results: The final cohort consisted of 204,688 matched patients with no prior palliative care consult. The pairs were well matched. The probability of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared to those who were not (20.6% vs. 15.2%, p < .0001). The risk of death without receipt of palliative care within the same period was low in both groups. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04-1.08). Conclusions: Cancer patients who completed ESAS were more likely to initiate palliative care services than those who didn’t. ESAS screening may help identify patients who would benefit from a palliative approach to care earlier in their clinical course.

scholarly journals Exploratory study of “real world” implementation of a clinical poverty tool in diverse family medicine and pediatric care settings

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Eva Purkey ◽  
Imaan Bayoumi ◽  
Helen Coo ◽  
Allison Maier ◽  
Andrew D. Pinto ◽  
...  
Keyword(s):  
Health Care ◽  
Family Medicine ◽  
Focus Groups ◽  
Exploratory Study ◽  
Universal Screening ◽  
Clinical Care ◽  
Pediatric Care ◽  
Successful Implementation ◽  
Care Providers ◽  
Convenience Sample

Abstract Background Poverty is associated with increased morbidity related to multiple child and adult health conditions and increased risk of premature death. Despite robust evidence linking income and health, and some recommendations for universal screening, poverty screening is not routinely conducted in clinical care. Methods We conducted an exploratory study of implementing universal poverty screening and intervention in family medicine and a range of pediatric care settings (primary through tertiary). After attending a training session, health care providers (HCPs) were instructed to perform universal screening using a clinical poverty tool with the question “Do you ever have difficulty making ends meet at the end of the month?” for the three-month implementation period. HCPs tracked the number of patients screened and a convenience sample of their patients were surveyed regarding the acceptability of being screened for poverty in a healthcare setting. HCPs participated in semi-structured focus groups to explore barriers to and facilitators of universal implementation of the tool. Results Twenty-two HCPs (10 pediatricians, 9 family physicians, 3 nurse practitioners) participated and 150 patients completed surveys. Eighteen HCPs participated in focus groups. Despite the self-described motivation of the HCPs, screening rates were low (9% according to self-reported numbers). The majority of patients either supported (72%) or were neutral (22%) about the appropriateness of HCPs screening for and intervening on poverty. HCPs viewed poverty as relevant to clinical care but identified time constraints, physician discomfort, lack of expertise and habitual factors as barriers to implementation of universal screening. Conclusions Poverty screening is important and acceptable to clinicians and patients. However, multiple barriers need to be addressed to allow for successful implementation of poverty screening and intervention in health care settings.

Impact of Medical Assistance in Dying on palliative care: A qualitative study

2020 ◽  
pp. 026921632096851
Author(s):  
Jean Jacob Mathews ◽  
David Hausner ◽  
Jonathan Avery ◽  
Breffni Hannon ◽  
Camilla Zimmermann ◽  
...  
Keyword(s):  
Palliative Care ◽  
Ethical Decision Making ◽  
Care Delivery ◽  
Symptom Control ◽  
Care Practice ◽  
Care Providers ◽  
Medical Assistance ◽  
Assisted Death ◽  
Medical Assistance In Dying ◽  
The Impact

Background: Medical Assistance in Dying comprises interventions that can be provided by medical practitioners to cause death of a person at their request if they meet predefined criteria. In June 2016, Medical Assistance in Dying became legal in Canada, sparking intense debate in the palliative care community. Aim: This study aims to explore the experience of frontline palliative care providers about the impact of Medical Assistance in Dying on palliative care practice. Design: Qualitative descriptive design using semi-structured interviews and thematic analysis Settings/participants: We interviewed palliative care physicians and nurses who practiced in settings where patients could access Medical Assistance in Dying for at least 6 months before and after its legalization. Purposeful sampling was used to recruit participants with diverse personal views and experiences with assisted death. Conceptual saturation was achieved after interviewing 23 palliative care providers (13 physicians and 10 nurses) in Southern Ontario. Results: Themes identified included a new dying experience with assisted death; challenges with symptom control; challenges with communication; impact on palliative care providers personally and on their relationships with patients; and consumption of palliative care resources to support assisted death. Conclusion: Medical Assistance in Dying has had a profound impact on palliative care providers and their practice. Communication training with access to resources for ethical decision-making and a review of legislation may help address new challenges. Further research is needed to understand palliative care provider distress around Medical Assistance in Dying, and additional resources are necessary to support palliative care delivery.

The Impact of Ozone Therapy on Antioxidant Status and Quality of Life in Palliative Care - Exploratory Study

2017 ◽  
Vol 68 (10) ◽  
pp. 2416-2421
Author(s):  
Irinel Petru Totolici ◽  
Alina Mihaela Pascu ◽  
Vladimir Poroch ◽  
Daniela Mosoiu
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Exploratory Study ◽  
Antioxidant Status ◽  
Oxygen Mixture ◽  
Ozone Therapy ◽  
Promising Alternative ◽  
Therapeutic Benefits ◽  
The Impact

There is a constant concern about finding new or alternative therapeutical approaches for symptom control and quality of life that are essential in palliative care. Ozone therapy has been studied for over a century, since the development of the first medical ozone-generator able to ensure a correct titration of the ozone-oxygen mixture. When used in precise therapeutic doses O3 prove many consistent and safe therapeutic benefits, with minimal and preventable side actions. Our prospective exploratory study aimed to analyze the effects of ozone therapy administration on palliative care patients, by dynamically monitoring the antioxidant status (superoxide-dismutase and glutathione-peroxidase serum levels), pain perception, and quality of life. The results confirm ozone therapy as a promising alternative adjuvant therapy for increasing the quality of life in palliative care services.

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