Trust in Physicians, Anxiety and Depression, and Decision-Making Preferences among Parents of Children with Serious Illness

2021 ◽  
Author(s):  
Vanessa N. Madrigal ◽  
Douglas L. Hill ◽  
Justine Shults ◽  
Chris Feudtner
Keyword(s):  
Decision Making ◽  
Anxiety And Depression ◽  
Serious Illness ◽  
Trust In Physicians

scholarly journals Short Graphic Values History Tool for decision making during serious illness

2019 ◽  
pp. bmjspcare-2018-001698 ◽  
Author(s):  
John J You ◽  
Peter Allatt ◽  
Michelle Howard ◽  
Carole A Robinson ◽  
Jessica Simon ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Practice ◽  
Family Members ◽  
Decisional Conflict ◽  
Development Phase ◽  
Serious Illness ◽  
Support Person ◽  
Validation Phase ◽  
Advance Care

ObjectivesTo develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness.MethodsThe development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before–after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1–2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one’s values.ResultsIn the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (−6.7 points, 95% CI −11.1 to −2.3, p=0.003; 0–100 scale; N=100), with the most improvement seen in the values clarity subscale (−10.0 points, 95% CI −17.3 to −2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1–5 scale; N=61).ConclusionsThe Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.

scholarly journals Predicting decisional conflict: Anxiety and depression in shared decision making

2020 ◽  
Author(s):  
Anja K. Köther ◽  
Georg W. Alpers ◽  
Björn Büdenbender ◽  
Maximilian Lenhart ◽  
Maurice S. Michel ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decisional Conflict ◽  
Anxiety And Depression ◽  
Shared Decision

P02.186 Anxiety and depression in family members of ICU patients: Ethical considerations regarding decision-making capacity

2000 ◽  
Vol 15 (S2) ◽  
pp. 372s-372s
Author(s):  
F. Pochard ◽  
E. Azoulay ◽  
S. Chevret ◽  
I. Ferrand ◽  
J.F Dhainaut ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Members ◽  
Anxiety And Depression ◽  
Ethical Considerations ◽  
Icu Patients ◽  
Decision Making Capacity

“There were more decisions and more options than just yes or no”: Evaluating a decision aid for advanced cancer patients and their family caregivers

2016 ◽  
Vol 15 (1) ◽  
pp. 44-56 ◽  
Author(s):  
Marie Bakitas ◽  
J. Nicholas Dionne-Odom ◽  
Lisa Jackson ◽  
Jennifer Frost ◽  
Margaret F. Bishop ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advance Care Planning ◽  
Decision Aid ◽  
Care Planning ◽  
Serious Illness ◽  
Early Palliative Care ◽  
Advance Care ◽  
Seriously Ill Patients ◽  
Seriously Ill

AbstractObjective:Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial.Method:Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD).Results:Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews “validating.” The key themes were: (1) “the earlier the better” to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning.Significance of results:The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.

scholarly journals Shared Mind: Communication, Decision Making, and Autonomy in Serious Illness

2011 ◽  
Vol 9 (5) ◽  
pp. 454-461 ◽  
Author(s):  
R. M. Epstein ◽  
R. L. Street
Keyword(s):  
Decision Making ◽  
Serious Illness

scholarly journals Patient Trust in Physicians and Shared Decision-Making Among African-Americans With Diabetes

2013 ◽  
Vol 28 (6) ◽  
pp. 616-623 ◽  
Author(s):  
Monica E. Peek ◽  
Rita Gorawara-Bhat ◽  
Michael T. Quinn ◽  
Angela Odoms-Young ◽  
Shannon C. Wilson ◽  
...  
Keyword(s):  
Decision Making ◽  
African Americans ◽  
Shared Decision Making ◽  
Shared Decision ◽  
Patient Trust ◽  
Trust In Physicians

Older Patients’ Perspectives on Quality of Serious Illness Care in Primary Care

2018 ◽  
Vol 35 (10) ◽  
pp. 1330-1336 ◽  
Author(s):  
Nebras. Abu Al Hamayel ◽  
Sarina R. Isenberg ◽  
Susan M. Hannum ◽  
Joshua Sixon ◽  
Katherine Clegg. Smith ◽  
...  
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Quality Improvement ◽  
Access To Care ◽  
Shared Decision Making ◽  
Older Patients ◽  
Shared Decision ◽  
Coordination Of Care ◽  
Serious Illness

Background: Despite increased focus on measuring and improving quality of serious illness care, there has been little emphasis on the primary care context or incorporation of the patient perspective. Objective: To explore older patients’ perspectives on the quality of serious illness care in primary care. Design: Qualitative interview study. Participants: Twenty patients aged 60 or older who were at risk for or living with serious illness and who had participated in the clinic’s quality improvement initiative. Methods: We used a semistructured, open-ended guide focusing on how older patients perceived quality of serious illness care, particularly in primary care. We transcribed interviews verbatim and inductively identified codes. We identified emergent themes using a thematic and constant comparative method. Results: We identified 5 key themes: (1) the importance of patient-centered communication, (2) coordination of care, (3) the shared decision-making process, (4) clinician competence, and (5) access to care. Communication was an overarching theme that facilitated coordination of care between patients and their clinicians, empowered patients for shared decision-making, related to clinicians’ perceived competence, and enabled access to primary and specialty care. Although access to care is not traditionally considered an aspect of quality, patients considered this integral to the quality of care they received. Patients perceived serious illness care as a key aspect of quality in primary care. Conclusions: Efforts to improve quality measurement and implementation of quality improvement initiatives in serious illness care should consider these aspects of care that patients deem important, particularly communication as an overarching priority.

Managing Opioids, Including Misuse and Addiction, in Patients With Serious Illness in Ambulatory Palliative Care: A Qualitative Study

2019 ◽  
Vol 37 (7) ◽  
pp. 507-513 ◽  
Author(s):  
Jessica S. Merlin ◽  
Sarah R. Young ◽  
Robert Arnold ◽  
Hailey W. Bulls ◽  
Julie Childers ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Resource Constraints ◽  
Future Research ◽  
Disease Treatment ◽  
Serious Illness ◽  
Opioid Prescribing ◽  
Medication Access ◽  
Seriously Ill Patients ◽  
Prescribing Medication

Background: Pain and opioid management are core ambulatory palliative care skills. Existing literature on how to manage opioid misuse/use disorder excludes patients found in palliative care settings, such as individuals with serious illness or those at the end of life. Objectives: We conducted an exploratory study to: (1) Identify the challenges palliative care clinicians face when prescribing opioids in ambulatory settings and (2) explore factors that affect opioid decision-making. Methods: We recruited palliative care clinicians who prescribe opioids in ambulatory settings, which included open-ended questions and was conducted online. Results were analyzed qualitatively using a content analysis-based approach. Results: Eighty-three palliative care clinicians (mostly MDs/DOs) participated. Challenges faced when prescribing opioids included clinician differences in approach to care (eg, transitioning from another clinician with more permissive opioid prescribing), medication access (eg, inadequate pharmacy supply), resource constraints (eg, access to mental health and addiction expertise), managing problems outside the typical palliative care scope (eg addiction). Participants also discussed factors that influenced their opioid prescribing decisions, such as opioid-related harms and risks that they need to weigh; they also spoke about the necessity of considering other factors like the patient’s environment, disease, treatment, and prognosis. Conclusion: This study highlights the challenge of opioid management in patients with serious illness, particularly when misuse or substance use disorder is present, and suggests areas for future research focus. Our next step will be to establish consensus on approaches to opioid prescribing decision-making and policy in seriously ill patients presenting to ambulatory palliative care.

scholarly journals Advance Care Planning (ACP) vs. Advance Serious Illness Preparations and Planning (ASIPP)

Healthcare ◽  
2020 ◽  
Vol 8 (3) ◽  
pp. 218 ◽  
Author(s):  
Daren K. Heyland
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Advance Care Planning ◽  
Older Persons ◽  
Clinical Decision Making ◽  
Past Research ◽  
Care Planning ◽  
Shared Decision ◽  
Serious Illness ◽  
Advance Care

COVID-19 has highlighted the reality of an impending serious illness for many, particularly for older persons. Those faced with severe COVID-19 infection or other serious illness will be faced with decisions regarding admission to intensive care and use of mechanical ventilation. Past research has documented substantial medical errors regarding the use or non-use of life-sustaining treatments in older persons. While some experts advocate that advance care planning may be a solution to the problem, I argue that the prevailing understanding and current practice of advance care planning perpetuates the problem and results in patients not receiving optimal patient-centered care. Much of the problem centers on the framing of advance care planning around end of life care, the lack of use of decision support tools, and inadequate language that does not support shared decision-making. I posit that a new approach and new terminology is needed. Advance Serious Illness Preparations and Planning (ASIPP) consists of discrete steps using evidence-based tools to prepare people for future clinical decision-making in the context of shared decision-making and informed consent. Existing tools to support this approach have been developed and validated. Further dissemination of these tools is warranted.

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