Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events

2016 ◽  
Vol 39 (9) ◽  
pp. 1039-1071 ◽  
Author(s):  
Leontine Groen-van de Ven ◽  
Carolien Smits ◽  
Karen Oldewarris ◽  
Marijke Span ◽  
Jan Jukema ◽  
...  

This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged—managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning.

2018 ◽  
pp. 265-275 ◽  
Author(s):  
David Y. Hwang ◽  
Douglas B. White

This chapter provides an overview of prognostication and key topics in ethics as they relate to the practice of neurocritical care. Challenges with prognostication are summarized. Outcome prognostication tools for ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and traumatic brain injury are outlined along with a discussion of their limitations. Best practices for communicating prognosis are reviewed. Shared decision-making with surrogate decision-makers in intensive care units is discussed in detail, with attention to advance care planning documentation and resolution of situations in which clinicians may have conscientious objections to potentially inappropriate treatment.


2020 ◽  
Vol 91 (11) ◽  
pp. 1032-1039
Author(s):  
Katharina Bronner ◽  
Lea Bodner ◽  
Ralf J. Jox ◽  
Georg Marckmann ◽  
Janine Diehl-Schmid ◽  
...  

Zusammenfassung Hintergrund Eine Demenzdiagnose konfrontiert Betroffene mit vielen gesundheitlichen und sozialen Entscheidungen. Aufgrund der Progression der Demenz ist für eine aktive Teilnahme am Entscheidungsprozess eine rechtzeitige Auseinandersetzung mit diesen Themen ratsam. Eine professionelle Unterstützung kann dabei helfen, frühzeitig gemäß den eigenen Wünschen und Möglichkeiten vorauszuplanen. Material und Methoden In einem mehrstufigen Prozess wurde eine Entscheidungshilfe basierend auf „advance care planning“ und „shared decision making“ entwickelt. Der Prototyp wurde an 8 Patient-Angehörigen-Dyaden aus einer Spezialambulanz für Früherkennung vorgetestet und für deren Bedürfnisse bestmöglich angepasst. In einer Pilotstudie wurde anschließend die Anwendbarkeit der Entscheidungshilfe bei weiteren 19 Patient-Angehörigen-Dyaden (Diagnose einer Alzheimer-Demenz bzw. gemischte Form; MMSE (Mini-Mental-State-Test-Summenwert) >20 und <27) mit ausgebildeten Gesprächsbegleitern als Intervention getestet. Ergebnis Das Ergebnis ist eine schriftliche Entscheidungshilfe für Menschen mit Demenz im Frühstadium und deren Angehörige, welche den Entscheidungsprozess bei wichtigen Themen (Vorsorgevollmacht, Patientenverfügung, Wohnen, Autofahren) unterstützt. Erste Ergebnisse weisen auf eine gute Akzeptanz und Handhabung hin. Patienten und Angehörige beschäftigten sich in hohem Maße mit den Themen und sprachen ihnen hohe Relevanz zu. Diskussion Trotz positiver Rückmeldung der Teilnehmer hinsichtlich Akzeptanz und Anwendbarkeit gab es größere Schwierigkeiten bei der Rekrutierung. Perspektivisch könnte der systematisierte Einsatz einer Entscheidungshilfe als Teil der Routineversorgung dazu beitragen, Entscheidungsprozesse dieser Patientengruppe zu unterstützen.


Healthcare ◽  
2020 ◽  
Vol 8 (3) ◽  
pp. 218 ◽  
Author(s):  
Daren K. Heyland

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.


2020 ◽  
Author(s):  
Sydney M. Dy ◽  
Julie M. Waldfogel ◽  
Danetta H. Sloan ◽  
Valerie Cotter ◽  
Susan Hannum ◽  
...  

Objectives. To evaluate availability, effectiveness, and implementation of interventions for integrating palliative care into ambulatory care for U.S.-based adults with serious life-threatening chronic illness or conditions other than cancer and their caregivers We evaluated interventions addressing identification of patients, patient and caregiver education, shared decision-making tools, clinician education, and models of care. Data sources. We searched key U.S. national websites (March 2020) and PubMed®, CINAHL®, and the Cochrane Central Register of Controlled Trials (through May 2020). We also engaged Key Informants. Review methods. We completed a mixed-methods review; we sought, synthesized, and integrated Web resources; quantitative, qualitative and mixed-methods studies; and input from patient/caregiver and clinician/stakeholder Key Informants. Two reviewers screened websites and search results, abstracted data, assessed risk of bias or study quality, and graded strength of evidence (SOE) for key outcomes: health-related quality of life, patient overall symptom burden, patient depressive symptom scores, patient and caregiver satisfaction, and advance directive documentation. We performed meta-analyses when appropriate. Results. We included 46 Web resources, 20 quantitative effectiveness studies, and 16 qualitative implementation studies across primary care and specialty populations. Various prediction models, tools, and triggers to identify patients are available, but none were evaluated for effectiveness or implementation. Numerous patient and caregiver education tools are available, but none were evaluated for effectiveness or implementation. All of the shared decision-making tools addressed advance care planning; these tools may increase patient satisfaction and advance directive documentation compared with usual care (SOE: low). Patients and caregivers prefer advance care planning discussions grounded in patient and caregiver experiences with individualized timing. Although numerous education and training resources for nonpalliative care clinicians are available, we were unable to draw conclusions about implementation, and none have been evaluated for effectiveness. The models evaluated for integrating palliative care were not more effective than usual care for improving health-related quality of life or patient depressive symptom scores (SOE: moderate) and may have little to no effect on increasing patient satisfaction or decreasing overall symptom burden (SOE: low), but models for integrating palliative care were effective for increasing advance directive documentation (SOE: moderate). Multimodal interventions may have little to no effect on increasing advance directive documentation (SOE: low) and other graded outcomes were not assessed. For utilization, models for integrating palliative care were not found to be more effective than usual care for decreasing hospitalizations; we were unable to draw conclusions about most other aspects of utilization or cost and resource use. We were unable to draw conclusions about caregiver satisfaction or specific characteristics of models for integrating palliative care. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were seen as barriers to implementation. Conclusions. For integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools and palliative care models were the most widely evaluated interventions and may be effective for improving only a few outcomes. More research is needed, particularly on identification of patients for these interventions; education for patients, caregivers, and clinicians; shared decision-making tools beyond advance care planning and advance directive completion; and specific components, characteristics, and implementation factors in models for integrating palliative care into ambulatory care.


2014 ◽  
Vol 18 (6) ◽  
pp. 2054-2065 ◽  
Author(s):  
Negin Hajizadeh ◽  
Lauren M. Uhler ◽  
Rafael E. Pérez Figueroa

Author(s):  
Don S. Dizon ◽  
Mary C. Politi ◽  
Anthony L. Back

One of the most important skills in medicine is communication. It lies at the heart of the doctor-patient relationship, and is particularly important when one has been diagnosed with a potentially life-threatening condition. Words are powerful and too often can be interpreted in ways not intended. In our session at the 2013 ASCO Annual Meeting, we discuss the communication of cancer and ways we might want to consider discussions regarding treatment options and prognosis. We recognize that all patients are different and that approaches should be individualized, to reflect each person's needs (what they want to know) while respecting their limits (how much they want to know). We discuss the concept of shared decision making, and how it can be used when there is uncertainty in what treatments may (or may not) accomplish. Finally, we discuss the skills that constitute a toolkit for communication, which we hope can be tailored to meet the variable needs of those we are caring for and by doing so, can be of help to clinicians in their own practices. In the era of personalized medicine, treatments may become more complex, and more options may be available. We hope to encourage providers to welcome patients as active participants in their care by sharing information, requesting their input, and by engaging them in important processes such as advance care planning—to ensure their needs and wishes are respected in the present and for whatever may come in the future.


2012 ◽  
Vol 2 (2) ◽  
pp. 173.1-173
Author(s):  
T Krones ◽  
N Biller Andorno ◽  
J in der Schmitten ◽  
C Mitchell ◽  
R Spirig ◽  
...  

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