scholarly journals Communication about life-sustaining therapy: insights from the Adaptive Leadership Framework

2013 ◽  
Vol 1 (2) ◽  
pp. 417 ◽  
Author(s):  
Elizabeth Neglia ◽  
Ruth Anderson ◽  
Debra Brandon ◽  
Sharron Docherty
Keyword(s):  
End Of Life ◽  
Quality Care ◽  
Secondary Analysis ◽  
Communication Patterns ◽  
Adaptive Leadership ◽  
Leadership Framework ◽  
Life Threatening ◽  
Hurler’S Syndrome ◽  
Challenging Situation ◽  
Substantial Change

Objective: Effective provider and caregiver communication is central to quality care during treatment for life-threatening illnesses. The study aim was to analyze communication patterns between providers and a parent of an infant with a life-threatening disease using the Adaptive Leadership Framework, which is an activity that involves mobilizing others to adapt to a difficult situation.Method: A secondary analysis was conducted using 23 interviews of providers and mother with an infant diagnosed with Hurler’s syndrome. The interviews focused on decision-making challenges in regard to the infant’s treatment and were conducted over a 1-year period (pre-transplant, study entry, monthly, after a life-threatening event or substantial change in treatment and at 1-year post enrollment). Content analysis was used to identify and categorize communication patterns using concepts from the Adaptive Leadership Framework.Results:  Infant illness events and parent-provider caregiving were chronicled across a 1-year trajectory.  Despite the life-threatening nature of Hurler’s disease, the parent and providers did not discuss palliative care or end-of-life. The parent sought direction and answers from the providers. The Adaptive Leadership Framework suggested how communication approaches were often mismatched with the apparent needs of the parent. Discussion:  The results of the study accentuate the need to improve communication between provider and parents about end-of-life for their child. Adaptive Leadership illuminates how providers can influence a parent’s behavior when facing a challenging situation. This study suggests that Adaptive Leadership is a useful framework to guide research about healthcare communication in dealing with challenging issues.

scholarly journals Engagement in Advance Care Planning: The Association With Cognitive Impairment and Care Preferences

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-418
Author(s):  
Hyo Jung Lee ◽  
Giyeon Kim
Keyword(s):  
Older Adults ◽  
Cognitive Impairment ◽  
Relative Risk ◽  
End Of Life ◽  
Advance Care Planning ◽  
Multinomial Logistic Regression ◽  
Quality Care ◽  
Care Planning ◽  
Advance Care ◽  
Four Levels

Abstract Although there has been growing evidence that Advance care planning (ACP) benefits people with cognitive impairment nearing death, our understanding about this issue is still limited. This study examines whether cognitive impairment is associated with ACP engagement and end-of-life care preferences among older adults in the U.S. Using data from the 2012 National Health and Trends Study (n=1798, aged 65 to 101), we identified four levels of ACP engagement: None (28%), Informal ACP conversation only (12%), Formal ACP only (14%), and Both informal and formal ACP (46%). Older adults with None showed the highest prevalence of having cognitive impairment (17%), followed by those with Formal ACP only (15%) and the other two (6%, 6%). The results of Multinomial Logistic Regression showed that, compared to those without, respondents with cognitive impairment had 143% increased relative risk of having None (RR = 2.43, CI: 1.58-3.73) and 81% increased relative risk of completing Formal ACP only (RR = 1.81, CI: 1.11-2.95) relative to completing Both informal and formal ACP. In addition, respondents with None were more likely to prefer to receive all treatments available nearing death than those with any ACP engagement. Achieving high quality care at the end of life can be more challenging for older adults with cognitive impairment and their family caregivers due to the limited capacity. Although encouraged, informal ACP conversation with loved ones does not necessarily occur before the formal ACP, especially, for those with cognitive impairment. Therefore, they may merit more attention such as early ACP engagement.

scholarly journals Goals-of-Care Consult and Future Costs, Acute Care and Hospice Use in Matched Cohorts of African Americans and Whites

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 521-521
Author(s):  
Lauren Starr ◽  
Connie Ulrich ◽  
Scott Appel ◽  
Paul Junker ◽  
Nina O’Connor ◽  
...  
Keyword(s):  
African Americans ◽  
End Of Life ◽  
Acute Care ◽  
Secondary Analysis ◽  
Care Utilization ◽  
Goals Of Care ◽  
Palliative Care Consultation ◽  
Significant Difference ◽  
Hospice Use ◽  
Care Costs

Abstract African Americans receive less hospice care and more aggressive end-of-life care than Whites. Little is known about how palliative care consultation to discuss goals-of-care (“PCC”) is associated with future acute care utilization and costs, or hospice use, by race. To compare future acute care costs and utilization and discharge to hospice between propensity-matched cohorts of African Americans with and without PCC, and Whites with and without PCC, we conducted a secondary analysis of 35,154 seriously-ill African American and White adults who had PCC at a high-acuity hospital and were discharged 2014-2016. We found no significant difference between African Americans with or without PCC in mean future acute care costs ($11,651 vs. $15,050, P=0.09), 30-day readmissions (P=0.58), future hospital days (P=0.34), future ICU admission (P=0.25), or future ICU days (P=0.30), but found greater discharge to hospice among African Americans with PCC (36.5% vs. 2.4%, P<0.0001). We found significant differences between Whites with PCC vs. without PCC in mean future acute care costs ($8,095 vs. $16,799, P<0.001), 30-day readmissions (10.2% vs. 16.7%, P<0.0001), future days hospitalized (3.7 vs. 6.3 days, P<0.0001), and discharge to hospice (42.7% vs. 3.0%, P<0.0001). Results suggest PCC decreases future acute care costs and utilization in Whites and, directionally but not significantly, in African Americans; and increases discharge to hospice in both races (15-fold in African Americans, 14-fold in Whites). Research is needed to understand how PCC supports end-of-life decision-making and hospice use across races and how systems and policies can enable effective goals-of-care consultations across settings.

Adaptive Challenges and Family Support: Patient Self-Management during Treatment for Chronic Hepatitis C

2021 ◽  
Vol 34 (4) ◽  
pp. 405-412
Author(s):  
Donald E. Bailey ◽  
Andrew J. Muir ◽  
Michael P. Cary ◽  
Natalie Ammarell ◽  
Sarah Seaver ◽  
...  
Keyword(s):  
Chronic Hepatitis ◽  
Hepatitis C ◽  
Chronic Hepatitis C ◽  
Medical Records ◽  
Family Intervention ◽  
Adaptive Leadership ◽  
Self Management ◽  
Leadership Framework ◽  
Adaptive Challenges ◽  
Adaptive Work

The authors describe a family’s adaptive challenges and adaptive work during a family member’s treatment for Chronic Hepatitis C. We audiorecorded index and final clinical visits and interviewed participants (patients and providers) following the visits. We interviewed by telephone and reviewed medical records over the course of treatment. Transcripts were analyzed using directed content analysis. Three themes were identified: family adaptive challenges, patient-described aspects of family members’ adaptive challenges, and family adaptive work. There were four subthemes related to family adaptive work. The adaptive leadership framework for chronic illness provided direction for future family intervention.

Barriers to High Quality End of Life Care in the Surgical Intensive Care Unit

2020 ◽  
pp. 104990912096997
Author(s):  
Ricardo Diaz Milian
Keyword(s):  
Intensive Care ◽  
End Of Life ◽  
Conflicts Of Interest ◽  
Quality Care ◽  
Surgical Intensive Care Unit ◽  
Care Needs ◽  
Surgical Intensive Care ◽  
Quality Reporting ◽  
Number Of Patients ◽  
Hospice And Palliative Care

End of life discussions frequently take place in surgical intensive care units, as a significant number of patients die while admitted to the hospital, and surgery is common during the last month of life. Multiple barriers exist to the initiation of these conversations, including: miscommunication between clinicians and surrogates, a paternalistic approach to surgical patients, and perhaps, conflicts of interest as an unwanted consequence of surgical quality reporting. Goal discordant care refers to the care that is provided to a patient that is incapacitated and that is not concordant to his/her wishes. This is a largely unrecognized medical error with devastating consequences, including inappropriate prolongation of life and non-beneficial therapy utilization. Importantly, hospice and palliative care needs to be recognized as quality care in order to deter the incentives that might persuade clinicians from offering these services.

Patient-reported assessment of quality care at end of life: Development and validation of Quality Care Questionnaire–End of Life (QCQ–EOL)

2006 ◽  
Vol 42 (14) ◽  
pp. 2310-2317 ◽  
Author(s):  
Young Ho Yun ◽  
Soo-Hyun Kim ◽  
Kyoung-Min Lee ◽  
Sang Min Park ◽  
Chang Geol Lee ◽  
...  
Keyword(s):  
End Of Life ◽  
Quality Care ◽  
Patient Reported ◽  
Development And Validation

Sense of responsibility in ICU end-of-life decision-making: Relatives’ experiences

2017 ◽  
Vol 26 (1) ◽  
pp. 270-279 ◽  
Author(s):  
Ranveig Lind
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Secondary Analysis ◽  
Active Role ◽  
Decision Making Process ◽  
Science Data ◽  
End Of Life Decision ◽  
Life Decision

Background: Relatives of intensive care unit patients who lack or have reduced capacity to consent are entitled to information and participation in decision-making together with the patient. Practice varies with legislation in different countries. In Norway, crucial decisions such as withdrawing treatment are made by clinicians, usually morally justified to relatives with reference to the principle of non-maleficence. The relatives should, however, be consulted about whether they know what the patient would have wished in the situation. Research objectives: To examine and describe relatives’ experiences of responsibility in the intensive care unit decision-making process. Research design: A secondary analysis of interviews with bereaved relatives of intensive care unit patients was performed, using a narrative analytical approach. Participants and research context: In all, 27 relatives of 21 deceased intensive care unit patients were interviewed about their experiences from the end-of-life decision-making process. Most interviews took place in the participants’ homes, 3–12 months after the patient’s death. Ethical considerations: Based on informed consent, the study was approved by the Data Protection Official of the Norwegian Social Science Data Services and by the Regional Committee for Medical and Health Research Ethics. Findings: The results show that intensive care unit relatives experienced a sense of responsibility in the decision-making process, independently of clinicians’ intention of sparing them. Some found this troublesome. Three different variants of participation were revealed, ranging from paternalism to a more active role for relatives. Discussion: For the study participants, the sense of responsibility reflects the fact that ethics and responsibility are grounded in the individual’s relationship to other people. Relatives need to be included in a continuous dialogue over time to understand decisions and responsibility. Conclusion: Nurses and physicians should acknowledge and address relatives’ sense of responsibility, include them in regular dialogue and help them separate their responsibility from that of the clinicians.

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.

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis

2018 ◽  
Vol 26 (6) ◽  
pp. 1680-1695 ◽  
Author(s):  
Pablo Hernández-Marrero ◽  
Emília Fradique ◽  
Sandra Martins Pereira
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Secondary Analysis ◽  
Controversial Issues ◽  
End Of Life Decisions ◽  
Ethics Research ◽  
Qualitative Secondary Analysis ◽  
End Of Life Decision ◽  
Life Decision

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations” (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making.

Sign in / Sign up

Export Citation Format

Share Document