scholarly journals Within the Circle of Care: the Patient's Lived Experience of Receiving Palliative Care

2021 ◽  
Author(s):  
◽  
Eileen McKinlay
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Work Experience ◽  
Methodological Approach ◽  
Care Quality ◽  
Central Component ◽  
Dual Practice ◽  
Care Experience ◽  
Palliative Care Setting ◽  
Circle Of Care

<p>I am a Registered Comprehensive Nurse with dual practice interests in the care of terminally ill people, and in quality improvement. This research study originates from my experience of working in a hospice as a clinical nurse then as a quality improvement co-ordinator in the early 1990s. At this time, quality improvement in the health services was relatively new, and there was no locally published research on quality improvement in palliative care. World wide there was a developing body of palliative care quality improvement literature (Higginson 1989, 1993, 1995); however there had been little research undertaken which reflected the patients' perception of the palliative care experience.  As a result of my work experience came the quest to find out directly from patients, the aspects of care which they considered valuable. I chose to use the descriptive-phenomenological methodology particularly utilising van Manen's (1990) phenomenological method. This methodology allows the participants' experience to stand apart from existing health professional defined palliative care knowledge, yet provides a way for this participant  knowledge to complement and augment it.  This descriptive-phenomenological study describes six persons' experience of care within a palliative care setting, and discusses the possible significance that this may have for the practice of palliative care. The participants had at least two care experiences within this setting and were interviewed on one occasion shortly after their discharge, within their own homes.  I invited the participants to talk about their care experiences. The anecdotes  which the participants relayed, when reflected on, revealed both a pattern of  storytelling as well as individual components of care. These components or elements of the care experience as well as informing each other, created a representation, a schematic description of their experience.  The representation 'The circle of care', is orientated around the central component of 'identity', with the encircling valued components of care being: 'keeping control', 'being safe', 'chosen isolation', 'mortality awareness', 'relaxation and relinquishment', 'caring qualities', 'being watched' and 'humour'. The circle of 'palliative care philosophy' contained these components, finally being enclosed by an outer circle of the 'spiritual\aesthetic qualities of the environment of care'.  The reality of people receiving palliative care is characterised by a number of supportive traditional and non-traditional aspects of caring. Although some characteristics have been described within general health and palliative care literature, some appear to have been generated by these particular participants as part their reality. The selected methodological approach and results limit the study to the context in which it was conducted. However the study suggests that patients are valued informants, and that they are able to augment existing palliative care knowledge. Ideally their input should be sought within the current systems of evaluating existing care and in the  creation of new models of care.</p>

scholarly journals Within the Circle of Care: the Patient's Lived Experience of Receiving Palliative Care

2021 ◽  
Author(s):  
◽  
Eileen McKinlay
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Work Experience ◽  
Methodological Approach ◽  
Care Quality ◽  
Central Component ◽  
Dual Practice ◽  
Care Experience ◽  
Palliative Care Setting ◽  
Circle Of Care

<p>I am a Registered Comprehensive Nurse with dual practice interests in the care of terminally ill people, and in quality improvement. This research study originates from my experience of working in a hospice as a clinical nurse then as a quality improvement co-ordinator in the early 1990s. At this time, quality improvement in the health services was relatively new, and there was no locally published research on quality improvement in palliative care. World wide there was a developing body of palliative care quality improvement literature (Higginson 1989, 1993, 1995); however there had been little research undertaken which reflected the patients' perception of the palliative care experience.  As a result of my work experience came the quest to find out directly from patients, the aspects of care which they considered valuable. I chose to use the descriptive-phenomenological methodology particularly utilising van Manen's (1990) phenomenological method. This methodology allows the participants' experience to stand apart from existing health professional defined palliative care knowledge, yet provides a way for this participant  knowledge to complement and augment it.  This descriptive-phenomenological study describes six persons' experience of care within a palliative care setting, and discusses the possible significance that this may have for the practice of palliative care. The participants had at least two care experiences within this setting and were interviewed on one occasion shortly after their discharge, within their own homes.  I invited the participants to talk about their care experiences. The anecdotes  which the participants relayed, when reflected on, revealed both a pattern of  storytelling as well as individual components of care. These components or elements of the care experience as well as informing each other, created a representation, a schematic description of their experience.  The representation 'The circle of care', is orientated around the central component of 'identity', with the encircling valued components of care being: 'keeping control', 'being safe', 'chosen isolation', 'mortality awareness', 'relaxation and relinquishment', 'caring qualities', 'being watched' and 'humour'. The circle of 'palliative care philosophy' contained these components, finally being enclosed by an outer circle of the 'spiritual\aesthetic qualities of the environment of care'.  The reality of people receiving palliative care is characterised by a number of supportive traditional and non-traditional aspects of caring. Although some characteristics have been described within general health and palliative care literature, some appear to have been generated by these particular participants as part their reality. The selected methodological approach and results limit the study to the context in which it was conducted. However the study suggests that patients are valued informants, and that they are able to augment existing palliative care knowledge. Ideally their input should be sought within the current systems of evaluating existing care and in the  creation of new models of care.</p>

Quality Improvement Initiatives to Reduce Mortality: An Opportunity to Engage Palliative Care and Improve Advance Care Planning

2018 ◽  
Vol 36 (2) ◽  
pp. 97-104 ◽  
Author(s):  
Signe Peterson Flieger ◽  
Erica Spatz ◽  
Emily J. Cherlin ◽  
Leslie A. Curry
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Advance Care Planning ◽  
Secondary Analysis ◽  
Care Quality ◽  
Care Planning ◽  
Goals Of Care ◽  
Patient Goals ◽  
Advance Care

Background: Despite substantial efforts to integrate palliative care and improve advance care planning, both are underutilized. Quality improvement initiatives focused on reducing mortality may offer an opportunity for facilitating engagement with palliative care and advance care planning. Objective: In the context of an initiative to reduce acute myocardial infarction (AMI) mortality, we examined challenges and opportunities for engaging palliative care and improving advance care planning. Methods: We performed a secondary analysis of qualitative data collected through the Leadership Saves Lives initiative between 2014 and 2016. Data included in-depth interviews with hospital executives, clinicians, administrators, and quality improvement staff (n = 28) from 5 hospitals participating in the Mayo Clinic Care Network. Focused analysis examined emergent themes related to end-of-life experiences, including palliative care and advance care planning. Results: Participants described challenges related to palliative care and advance care planning in the AMI context, including intervention decisions during an acute event, delivering care aligned with patient and family preferences, and the culture around palliative care and hospice. Participants proposed strategies for addressing such challenges in the context of improving AMI quality outcomes. Conclusions: Clinicians who participated in an initiative to reduce AMI mortality highlighted the challenges associated with decision-making regarding interventions, systems for documenting patient goals of care, and broader engagement with palliative care. Quality improvement initiatives focused on mortality may offer a meaningful and feasible opportunity for engaging palliative care. Primary palliative care training is needed to improve discussions about patient and family goals of care near the end of life.

What type of feedback to clinicians best improves conformance to supportive care quality measures?

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 102-102
Author(s):  
Arif Kamal ◽  
Amy Pickar Abernethy ◽  
Janet Bull ◽  
Jonathan Nicolla ◽  
Joseph Kelly ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Supportive Care ◽  
Symptom Assessment ◽  
Quality Measures ◽  
Care Quality ◽  
Quality Data ◽  
Improvement Project ◽  
Edmonton Symptom Assessment Scale ◽  
Comparative Feedback

102 Background: Supportive care is under-addressed in oncology and an important area for quality improvement. Regular, directed feedback is an important component of effective quality management. What type of feedback yields the highest conformance to supportive care measures? Methods: Within the Carolinas Palliative Care Consortium, we conducted a series of three PDSA cycles, each one month-long, to evaluate various types of clinician-directed feedback on conformance to two supportive care measures. We collected data using a web-based, mobile health platform called QDACT-PC (Quality Data Collection Tool for Palliative Care). Every four weeks, feedback to clinicians on performance was changed in a stepwise fashion, from “no feedback” to “personal feedback” to “comparative feedback” (personal conformance compared to the rest of the Consortium). We monitored weekly changes to conformance to two quality measures: documentation of timely management of constipation and dyspnea. To meet the measures, symptoms with intensity of >3/10 on the Edmonton Symptom Assessment Scale required documentation of intervention within 24 hours. Conformance rates were calculated and compared to a historical baseline. Results: 23 providers participated in this quality improvement project, which spanned 465 patient encounters across 104 unique patients. Baseline data generated from 3/2008-10/2011 demonstrated baseline conformance to the dyspnea and constipation measures at 6% (27/457) and 4% (14/398), respectively. After addition of an electronic, prospective quality monitoring system alone (QDACT-PC), conformance increased to 93% (42/45) and 92% (23/25), respectively. With personalized, weekly feedback, these rates increased to 94% for dyspnea and 100% for constipation. Feedback comparing personal performance to the average of the rest of the Consortium further increased this to 100% for both. Conclusions: Regular, weekly feedback on performance increases conformance to supportive care quality measures. Adding comparative feedback versus other peers solidifies this effect. Duration of the effect is being evaluated.

Formation of an international quality improvement collaborative for palliative care: The Global Palliative Care Quality Alliance (GPCQA).

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 91-91
Author(s):  
Arif Kamal ◽  
Jonathan Nicolla ◽  
Fred Friedman ◽  
Charles S. Stinson ◽  
Laura Patel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Data Collection ◽  
Best Practices ◽  
Point Of Care ◽  
Shared Vision ◽  
Care Quality ◽  
Quality Data ◽  
Spiritual Assessment ◽  
National Quality

91 Background: Formal mechanisms to share data on quality remain immature in specialty palliative care. As the field grows, infrastructure that promotes collaboration among academic and community-based practice will be required to foster comparisons and benchmarking of data to inform areas for quality improvement. Further, such relationships will create a palliative care “quality improvement laboratory”, where proposed guidelines and best practices can be developed, implemented, and tested. Methods: We set out to bring together specialty palliative care practices with a shared vision for collaborative quality improvement. We modeled our approach after the Institute for Healthcare Improvement Breakthrough Series alongside our Rapid Learning Quality Improvement paradigm. We use a set of common data collection procedures, across an electronic point-of-care platform called Quality Data Collection Tool (QDACT), alongside a centralized data registry. Further, we meet and discuss challenges and issues, compare best practices, and brainstorm new projects through biweekly conference calls. Results: We have created a multi-institutional collaboration for quality assessment and improvement in specialty palliative care. Termed the Global Palliative Care Quality Alliance, we have brought together 11 academic and community organizations, both general and oncology-specific, across six states to study various areas of quality practice. Short-term, we will conduct rapid-cycling quality improvement projects addressing National Quality Forum domains for quality palliative care, including documentation of spiritual assessment and timely advance care planning. Long-term, we aim to study the link between quality measure adherence and outcomes and further align our initiatives with those of other large consortia, like the Palliative Care Research Cooperative and Palliative Care Quality Network. Conclusions: Collaborative quality improvement is needed in specialty palliative care across a national platform. Developing the infrastructure to perform standardized quality improvement is achievable across multiple palliative care settings.

scholarly journals The Use of Toolkits for Palliative Care Quality Improvement: The VA's “Strive for 65 Implementation Package” (SA500)

2013 ◽  
Vol 45 (2) ◽  
pp. 391
Author(s):  
Sangeeta Ahluwalia ◽  
Carol Luhrs ◽  
Therese Cortez ◽  
Amos Bailey ◽  
Scott Shreve ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Care Quality ◽  
Implementation Package

Subjective Experiences of Coping Among Caregivers in Palliative Care

2013 ◽  
Vol 18 (2) ◽  
Author(s):  
Sarah Uren ◽  
Tanya Graham
Keyword(s):  
Palliative Care ◽  
Cumulative Effect ◽  
Central Component ◽  
Subjective Experiences ◽  
Future Directions ◽  
Qualitative Research Design ◽  
Care Organisation ◽  
Palliative Care Setting ◽  
Central Resource ◽  
Caregiver Coping

Several research studies have sought to quantify the effects of formal caregiving on the caregivers; however, limited research has described the experiences of caregiving using a qualitative research design. In this study, we used an interpretative, phenomenological method to explore how coping operates as a central resource for trained caregivers and professional nurses in a palliative care setting. Eleven participants from a community-based, palliative care organisation in South Africa provided narrative accounts of coping within the caregiving process. Our findings identified seven themes related to the different dimensions of coping and the implications of these responses on individual caregivers. In this article, we discuss the cumulative effect of caregiver exposure to stressors, consider future directions to enhance caregiving, and conclude that effective caregiver coping plays a substantial role in caregiver and patient wellbeing and should therefore be a central component of enhancing palliative care interventions.

scholarly journals Successes and Challenges in One Organization’s Process of Implementing Multiple System-Wide Primary Palliative Care Quality Improvement Projects (TH310D)

2019 ◽  
Vol 57 (2) ◽  
pp. 369-370
Author(s):  
Dio Kavalieratos ◽  
Judith Resick ◽  
Megan Glance ◽  
Zachariah Hoydich ◽  
Scott Freeman ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Care Quality ◽  
Successes And Challenges

Perceptions of Facilitators and Barriers to Measuring and Improving Quality in Palliative Care Programs

2020 ◽  
Vol 37 (12) ◽  
pp. 1022-1028
Author(s):  
Kamini Kuchinad ◽  
Ritu Sharma ◽  
Sarina R. Isenberg ◽  
Nebras Abu Al Hamayel ◽  
Sallie J. Weaver ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Nurse Practitioners ◽  
Quality Measurement ◽  
Care Quality ◽  
Leadership Role ◽  
Leadership Roles ◽  
Educational Support ◽  
Team Members ◽  
Facilitators And Barriers

Objective: To examine perceptions of facilitators and barriers to quality measurement and improvement in palliative care programs and differences by professional and leadership roles. Methods: We surveyed team members in diverse US and Canadian palliative care programs using a validated survey addressing teamwork and communication and constructs for educational support and training, leadership, infrastructure, and prioritization for quality measurement and improvement. We defined key facilitators as constructs rated ≥4 (agree) and key barriers as those ≤3 (disagree) on 1 to 5 scales. We conducted multivariable linear regressions for associations between key facilitators and barriers and (1) professional and (2) leadership roles, controlling for key program and respondent factors and clustering by program. Results: We surveyed 103 respondents in 11 programs; 45.6% were physicians and 50% had leadership roles. Key facilitators across sites included teamwork, communication, the implementation climate (or environment), and program focus on quality improvement. Key barriers included educational support and incentives, particularly for quality measurement, and quality improvement infrastructure such as strategies, systems, and skilled staff. In multivariable analyses, perceptions did not differ by leadership role, but physicians and nurse practitioners/nurses/physician assistants rated most constructs statistically significantly more negatively than other team members, especially for quality improvement (6 of the 7 key constructs). Conclusions: Although participants rated quality improvement focus and environment highly, key barriers included lack of infrastructure, especially for quality measurement. Building on these facilitators and measuring and addressing these barriers might help programs enhance palliative care quality initiatives’ acceptability, particularly for physicians and nurses.

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