scholarly journals FAmily CEntered (FACE) advance care planning: Study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers

2015 ◽  
Vol 43 ◽  
pp. 172-178 ◽  
Author(s):  
Allison L. Kimmel ◽  
Jichuan Wang ◽  
Rachel K. Scott ◽  
Linda Briggs ◽  
Maureen E. Lyon
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.


2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 11-11
Author(s):  
Sarah Lowry ◽  
Hillary Lum ◽  
Seiko Izumi ◽  
Erik K Fromme

11 Background: Oncology patients that participate in advance care planning (ACP) and complete advance directives (AD) are more likely to receive goal-concordant end of life care. The AD documentation rate within our academically-affiliated community outpatient oncology clinic is below national and institutional averages. A group medical visit effectively facilitated ACP in a geriatric primary care setting. This quality improvement project implemented a similar ACP conversation group (ACPCG) in an outpatient oncology setting. Methods: Adult patients in a community oncology clinic were contacted and invited to participate in ACPCG by a nurse practitioner who works in the clinic. Using a facilitation guide, the 2-session intervention included sharing past ACP experiences, identifying surrogate decision makers, starting conversations, and discussing surrogate flexibility. Recruitment, retention, and patient ACP outcomes were measured. Results: Seventy-six patients were successfully contacted and seventeen signed up (22% recruitment rate). Twelve patients participated in the first session, and five attended the second session (42% retention). Recruitment was time intensive, and several patients responded that ACP was not relevant to their situation. Six participants completed an AD prior to attending the first session (50%) but only one had an AD in their medical record. Two had surrogate decision makers documented prior to the intervention (16%). Participants reported the ACPCG as helpful in making the process less overwhelming. There was no increase in AD documentation rates within the medical record four weeks after the intervention, but the rate of surrogate documentation increased to seven (58%). Conclusions: Participants had higher than average rates of AD completion prior to the intervention but had not shared the document with their providers. While the ACPCG was well received by patients, implementation faced multiple challenges. More efficient recruitment methods and strategies to facilitate better patient understanding of ACP are needed.


2020 ◽  
Vol 8 (11) ◽  
Author(s):  
Charlie Corke ◽  
Stella-May Gwini ◽  
Sharyn Milnes ◽  
Ben Jong ◽  
Neil Orford

Faced with a high likelihood of poor outcome treatment choice is difficult and few people are certain about what they would, or would not, want. Recognising this we sought to explore how individuals react to hypothetical choices made on their behalf by surrogate decision-makers. We used an online survey, using a hypothetical scenario involving a 95% chance of poor outcome and 5% chance of good outcome. There were 510 participants. Most (63%) expressed uncertainty regarding preference for treatment. 37% expressed certainty (12% certainly wanting treatment and 25% certainly not wanting treatment). Seventy seven percent indicated they would be understanding or pleased if the surrogate chose to treat, while 92% were understanding or pleased with a decision not to treat by a surrogate decision maker. Patients who had expressed ‘certain’ wishes when presented with the scenario (either certainly wanting or certainly not wanting treatment) were more likely to be angry/upset when surrogates made the opposite decision. Those who had completed an Advance Care Plan (ACP) were more likely to be angry/upset when these wishes were not followed. This finding suggests it may be unrealistic to expect surrogate decision-makers to identify ‘what the patient would want’ as a binary choice between consenting to treatment or refusing treatment when chances are poor and the decision is difficult. Asking surrogates to identify choices that they believe would be likely to make the person angry or upset might be more appropriate and more effective. Most people were understanding of decisions made by surrogates (whether these matched their preference or not). This finding should be used to reassure surrogates who are required to make difficult decisions. Additionally, factors associated with patient upset/anger at surrogate treatment decisions were identified. This most commonly included those patients who had documented wishes in an Advance Care Plan that was not followed.


2021 ◽  
Vol 20 (Supplement_1) ◽  
Author(s):  
AH Higashitsuji ◽  
SO Okada ◽  
YF Fujisawa ◽  
MS Sano ◽  
NT Taguchi ◽  
...  

Abstract Funding Acknowledgements Type of funding sources: None. Background/Introduction Heart failure has a poor prognosis, and the number of patients continues to increase. Moreover, since it is a disease that causes various sufferings, substantial end-of-life care is needed. Advanced care planning (ACP) is a part of end-of-life care for patients with heart failure. ACP provides patient decision-making opportunities, documenting end-of-life preferences, and increasing end-of-life conversation. However, the ACP intervention for patients with heart failure is not integrated, and studies are insufficient. In addition, Japan follows a non-Western culture, in which participation in the medical decision-making is reluctant and considered to be less prepared for ACP. Clarifying the effects of systematic ACP on patients with heart failure in Japan can be used to determine effective interventions in Japan and may provide effective ACP intervention for patients who have no preparedness worldwide. Purpose This study aimed to identify the effect of protocol-based intervention on the outcomes of ACP in Japanese outpatients with heart failure. Methods This is a single-center retrospective observational study. Data on patient attributes, conversation records, and document information from medical records of patients who have undergone intervention using the predeveloped ACP protocol were collected. Numerical data were statistically analyzed. ACP results were evaluated by performing deductive content analysis on the basis of existing frameworks. A subgroup analysis was performed on differences in ACP outcomes based on patient attributes. Results Data were collected from 13 patients who underwent ACP intervention. The median age was 69 years. Moreover, 76% were male, 84% were married, 76% were living with family, and 46% were receiving home-visit nursing care. New York Heart Association functional classification II was the most common in the severity classification of heart failure, and ischemic cardiomyopathy was the most common etiology. Documenting patient’s wishes, recording patient’s wishes in medical record, and identifying what brings value to patient"s life were achieved in 76% of the participants. Deciding surrogate decision makers, discussing values and care preferences with the surrogate, and discussing values and care preferences with health care professionals were achieved in 69% of the participants. Differences in patient attributes, such as age and presence or absence of home-visit nursing, did not affect ACP outcomes. Conclusion Protocol-based ACP allows patients with heart failure to determine surrogate decision makers and discuss care preferences with healthcare professionals, identify what they value, and record their wishes. The protocol-based ACP had a positive impact on ACP outcomes, without being restricted by patient attributes.


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