How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role

Li, Lingsheng; Nelson, Judith E.; Hanson, Laura C.; Cox, Christopher E.; Carson, Shannon S.; Chai, Emily; Keller, Kristine L.; Tulsky, James A.; Danis, Marion

doi:10.1097/ccm.0000000000003035

Cited by 28 publications

(16 citation statements)

References 21 publications

(27 reference statements)

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“…2 ). For patients with cognitive impairment (as indicated by documented diagnosis of dementia and/or a Brief Interview for Mental Status score of greater than 12 in Section C of the Minimum Data Set) [ 39 ], the RC will recruit the patient’s legally authorized representative to respond to survey questions as the patient’s proxy [ 40 , 41 ]. To recruit potential patients and caregivers sequentially, the RC will screen and recruit all patients and caregivers in the order that patients are admitted to the SNF, until the recruitment in the SNF is complete for the study month.…”

Section: Methodsmentioning

confidence: 99%

Transitional care from skilled nursing facilities to home: study protocol for a stepped wedge cluster randomized trial

Toles

Colón‐Emeric

Hanson

et al. 2021

Trials

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Background Skilled nursing facility (SNF) patients are medically complex with multiple, advanced chronic conditions. They are dependent on caregivers and have experienced recent acute illnesses. Among SNF patients, the rate of mortality or acute care use is over 50% within 90 days of discharge, yet these patients and their caregivers often do not receive the quality of transitional care that prepares them to manage serious illnesses at home. Methods The study will test the efficacy of Connect-Home, a successfully piloted transitional care intervention targeting seriously ill SNF patients discharged to home and their caregivers. The study setting will be SNFs in North Carolina, USA, and, following discharge, in patients’ home. Using a stepped wedge cluster randomized trial design, six SNFs will transition at randomly assigned intervals from standard discharge planning to the Connect-Home intervention. The SNFs will contribute data for patients (N = 360) and their caregivers (N = 360), during both the standard discharge planning and Connect-Home time periods. Connect-Home is a two-step intervention: (a) SNF staff create an individualized Transition Plan of Care to manage the patient’s illness at home; and (b) a Connect-Home Activation RN visits the patient’s home to implement the written Transition Plan of Care. A key feature of the trial includes training of the SNF and Home Care Agency staff to complete the transition plan rather than using study interventionists. The primary outcomes will be patient preparedness for discharge and caregiver preparedness for caregiving role. With the proposed sample and using a two-sided test at the 5% significance level, we have 80% power to detect a 18% increase in the patient’s preparedness for discharge score. We will employ linear mixed models to compare observations between intervention and usual care periods to assess primary outcomes. Secondary outcomes include (a) patients’ quality of life, functional status, and days of acute care use and (b) caregivers’ burden and distress. Discussion Study results will determine the efficacy of an intervention using existing clinical staff to (a) improve transitional care for seriously ill SNF patients and their caregivers, (b) prevent avoidable days of acute care use in a population with persistent risks from chronic conditions, and (c) advance the science of transitional care within end-of-life and palliative care trajectories of SNF patients and their caregivers. While this study protocol was being implemented, the COVID-19 pandemic occurred and this protocol was revised to mitigate COVID-related risks of patients, their caregivers, SNF staff, and the study team. Thus, this paper includes additional material describing these modifications. Trial registration ClinicalTrials.gov NCT03810534. Registered on January 18, 2019.

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Section: Methodsmentioning

confidence: 99%

Transitional care from skilled nursing facilities to home: study protocol for a stepped wedge cluster randomized trial

Toles

Colón‐Emeric

Hanson

et al. 2021

Trials

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“…Keywords Gender differences, Life-sustainment treatments, The patient autonomy act those the surrogate might make for themselves [31]. Family members as surrogates commonly regard their role as being the patient's voice, an advocate for the patient, an advocate for other family members, or an advocate for themselves [32].…”

Section: Introductionmentioning

confidence: 99%

Gender differences in the intention to withhold life-sustaining treatments involving severe dementia for self and on behalf of parent or spouse

et al. 2022

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Background Few studies have explored gender differences in the attitudes toward advanced care planning and the intention to withhold life-sustaining treatments (LSTs) involving severe dementia in Asian countries. We examined gender differences in the attitude toward the Patient Autonomy Act (PAA) in Taiwan and how the gender differences in these attitudes affect the intention to withhold LSTs for severe dementia. We also investigated self–other differences in the intention to withhold LSTs between genders. Methods Between March and October 2019, a structured questionnaire was distributed to hospitalized patients’ family members through face-to-face contact in an academic medical center. Exploratory factor analysis and independent and paired-sample t-tests were used to describe gender differences. Mediation analyses controlled for age, marital status, and education level were conducted to examine whether the attitude toward the PAA mediates the gender effect on the intention to withhold LSTs for severe dementia. Results Eighty respondents filled out the questionnaire. Exploratory factor analysis of the attitude toward the PAA revealed three key domains: regarding the PAA as (1) promoting a sense of abandonment, (2) supporting patient autonomy, and (3) contributing to the collective good. Relative to the men, the women had lower average scores for promoting a sense of abandonment (7.48 vs. 8.94, p = 0.030), higher scores for supporting patient autonomy (8.74 vs. 7.94, p = 0.006), and higher scores for contributing to the collective good (8.64 vs. 7.47, p = 0.001). Compared with the women, the men were less likely to withhold LSTs for severe dementia (15.84 vs. 18.88, p = 0.01). Mediation analysis revealed that the attitude toward the PAA fully mediated the gender differences in the intention to withhold LSTs for severe dementia. Both men and women were more likely to withhold LSTs for themselves than for their parents. Compared with the women, the men were more likely to withhold resuscitation for themselves than for their parents (p = 0.05). Women were more likely to agree to enteral tube feeding and a tracheotomy for their husbands than for themselves; men made consistent decisions for themselves and their wives in those LST scenarios. Conclusion Gender influences the attitude toward advanced care planning and consequently affects the intention to withhold LSTs, indicating that there may be a difference in how men and women perceive EOL decision-making for severe dementia in Taiwan. Further studies are warranted.

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“…[1][2][3] It also can be a disruptive and emotional event. [4][5][6] During times of stress and fear, clear communication is important. 5 7 Previous experiences and cultural norms may influence perceptions, communication, behaviour and medical choices that then shape a critical illness experience.…”

Section: Introductionmentioning

confidence: 99%

Persistence of patient and family experiences of critical illness

Butler

Francis

Davis³

et al. 2020

BMJ Open

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ObjectiveTo investigate: (1) patient and family experiences with healthcare and the intensive care unit (ICU); (2) experiences during their critical illness; (3) communication and decision making during critical illness; (4) feelings about the ICU experience; (5) impact of the critical illness on their lives; and (6) concerns about their future after the ICU.DesignFour semistructured focus group interviews with former ICU patients and family members.SettingsMulticultural community group and local hospitals containing medical/surgical ICUs.ParticipantsPatients and family who experienced a critical illness within the previous 10 years.InterventionsNone.Measurements and main resultsFour separate focus groups each lasting a maximum of 150 min and consisting of a total of 21 participants were held. Focus groups were conducted using a semistructured script including six topics relating to the experience of critical illness that facilitated deduction and the sorting of data by thematic analysis into five predominant themes. The five main themes that emerged from the data were: (1) personalised stories of the critical illness; (2) communication and shared decision making, (3) adjustment to life after critical illness, (4) trust towards clinical team and relevance of cultural beliefs and (5) end-of-life decision making. Across themes, we observed a misalignment between the medical system and patient and family values and priorities.ConclusionsThe experience of critical illness of a diverse group of patients and families can remain vivid for years after ICU discharge. The identified themes reflect the strength of memory of such pivotal experiences and the importance of a narrative around those experiences. Clinicians need to be aware of the lasting effects of critical illness has on patients and families.

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How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role

Abstract: Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care.

Cited by 28 publications

References 21 publications

Transitional care from skilled nursing facilities to home: study protocol for a stepped wedge cluster randomized trial

Transitional care from skilled nursing facilities to home: study protocol for a stepped wedge cluster randomized trial

Gender differences in the intention to withhold life-sustaining treatments involving severe dementia for self and on behalf of parent or spouse

Persistence of patient and family experiences of critical illness

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