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Background: Treatment decisions commonly have to be made in intensive care units (ICUs). These decisions are difficult for surrogate decision makers and often lead to decisional conflict, psychological distress, and treatments misaligned with patient preferences., Objective: To determine whether a decision aid about prolonged mechanical ventilation improved prognostic concordance between surrogate decision makers and clinicians compared with a usual care control., Design: Multicenter, parallel, randomized, clinical trial. (ClinicalTrials.gov: NCT01751061)., Setting: 13 medical and surgical ICUs at 5 hospitals., Participants: Adult patients receiving prolonged mechanical ventilation and their surrogates, ICU physicians, and ICU nurses., Intervention: A Web-based decision aid provided personalized prognostic estimates, explained treatment options, and interactively clarified patient values to inform a family meeting. The control group received information according to usual care practices followed by a family meeting., Measurements: The primary outcome was improved concordance on 1-year survival estimates, measured with the clinician-surrogate concordance scale (range, 0 to 100 percentage points; higher scores indicate more discordance). Secondary and additional outcomes assessed the experiences of surrogates (psychological distress, decisional conflict, and quality of communication) and patients (length of stay and 6-month mortality). Outcomes assessors were blinded to group allocation., Results: The study enrolled 277 patients, 416 surrogates, and 427 clinicians. Concordance improvement did not differ between intervention and control groups (mean difference in score change from baseline, -1.7 percentage points [95% CI, -8.3 to 4.8 percentage points]; P = 0.60). Surrogates' postintervention estimates of patients' 1-year prognoses did not differ between intervention and control groups (median, 86.0% [interquartile range {IQR}, 50.0%] vs. 92.5% [IQR, 47.0%]; P = 0.23) and were substantially more optimistic than results of a validated prediction model (median, 56.0% [IQR, 43.0%]) and physician estimates (median, 50.0% [IQR, 55.5%]). Eighty-two intervention surrogates (43%) favored a treatment option that was more aggressive than their report of patient preferences. Although intervention surrogates had greater reduction in decisional conflict than control surrogates (mean difference in change from baseline, 0.4 points [CI, 0.0 to 0.7 points]; P = 0.041), other surrogate and patient outcomes did not differ., Limitation: Contamination among clinicians could have biased results toward the null hypothesis., Conclusion: A decision aid about prolonged mechanical ventilation did not improve prognostic concordance between clinicians and surrogates, reduce psychological distress among surrogates, or alter clinical outcomes. Decision support in acute care settings may require greater individualized attention for both the cognitive and affective challenges of decision making., Primary Funding Source: National Institutes of Health.

Rationale: Chronically critically ill patients are often dependent on family members for surrogate decision-making, and these surrogates are at high risk for emotional distress. We hypothesized that patient- and surrogate-specific risk factors for surrogate post-traumatic stress disorder (PTSD) symptoms can be identified early in the course of chronic critical illness., Objectives: To identify risk factors for PTSD symptoms in surrogate decision-makers of chronically critically ill patients., Methods: We performed a secondary analysis of the database from a multicenter randomized trial of a communication intervention for chronic critical illness patients and surrogates. Variables preselected for plausible mechanism for increasing PTSD symptoms and identifiable by Day 10 of mechanical ventilation were included in the analysis for association with surrogate PTSD symptoms at 90 days, as measured by the Impact of Events Score-Revised (IES-R). Patient factors included demographics, insurance status, baseline functional status, chronic comorbidities, illness severity, and presence of advance directive. Surrogate variables included demographics, education level and employment, religion, relationship to patient, and Hospital Anxiety and Depression Scale score measured at enrollment. Multivariable linear regression models were then constructed for 26 potential risk factors, including biologically or mechanistically plausible confounders for each, with IES-R score as the outcome. All models were adjusted for multiple respondents, using a mixed model, considering the patients as a random factor., Results: Our analysis included 306 surrogates for 224 patients. A total of 49% of patients were female, and mean age was 59 years (95% confidence interval [CI], 56.4-60.7). A total of 71% of surrogates were female, and mean age was 51 years (95% CI, 49.3-52.4). After examining each potential risk factor in a separate multivariable model, only Day-10 surrogate Hospital Anxiety and Depression Scale score (β coefficient = 1.02; 95% CI, 0.73-1.30) and patient unresponsiveness (β coefficient = 8.39; 95% CI, 0.83-15.95) were associated with higher IES-R scores., Conclusions: Among surrogate decision-makers for chronically critically ill patients, high anxiety and depression scores and patient unresponsiveness on or near Day 10 of mechanical ventilation are risk factors for PTSD symptoms at 90 days.

Background: Nursing home (NH) residents with dementia experience high rates of intensive treatment near the end of life. Limited research examines whether treatment is concordant with goals of care (GOC)., Objectives: We analyzed data from the GOC trial to describe family decision makers' preferred GOC and perceptions of goal-concordant care for NH residents with late-stage dementia We compared subsequent treatment orders when families chose a primary goal of comfort versus other goals., Design: We performed a secondary analysis of data from baseline and 9-month family decision-maker interviews and chart reviews., Setting and Participants: A total of 302 dyads of NH residents and family decision makers in 22 North Carolina NHs were enrolled., Measurements: In baseline and follow-up interviews, families reported on their and NH staff's primary GOC, and perceived prognosis and goal-concordant care. Chart reviews provided data on treatment orders, hospital transfers, and hospice, which were compared after selection of a primary goal of comfort versus other goals., Results: Family chose comfort as the primary goal for 66% of residents at baseline, and for nearly 80% by 9 months or death. At baseline, 49% perceived concordance with NH staff on the primary goal, and 69% at follow-up. In multivariate models, choice of comfort as the primary goal, versus other goals, was associated with half as many hospital transfers (0.11 vs. 0.25/90 person-days, confidence interval [-0.2 to -0.01]), but not with hospice or treatment orders., Conclusions: Most families chose comfort as the primary GOC. Further research is needed to translate this preference into comfort-focused treatment plans for late-stage dementia. Clinicaltrials.gov : NCT01565642 (3/26/12).

Objectives: (1) Compare family decision-makers' perceptions of quality of communication with nursing home (NH) staff (nurses and social workers) and clinicians (physicians and other advanced practitioners) for persons with advanced dementia; (2) determine the extent to which characteristics of NH residents and family decision-makers are associated with those perceptions., Design: Secondary analysis of baseline data from a cluster randomized trial of the Goals of Care intervention., Setting: Twenty-two NHs in North Carolina., Participants: Family decision-makers of NH residents with advanced dementia (n = 302)., Measurements: During the baseline interviews, family decision-makers rated the quality of general communication and communication specific to end-of-life care using the Quality of Communication Questionnaire (QoC). QoC item scores ranged from 0 to 10, with higher scores indicating better quality of communication. Linear models were used to compare QoC by NH provider type, and to test for associations of QoC with resident and family characteristics., Results: Family decision-makers rated the QoC with NH staff higher than NH clinicians, including average overall QoC scores (5.5 [1.7] vs 3.7 [3.0], P < .001), general communication subscale scores (8.4 [1.7] vs 5.6 [4.3], P < .001), and end-of-life communication subscale scores (3.0 [2.3] vs 2.0 [2.5], P < .001). Low scores reflected failure to communicate about many aspects of care, particularly end-of-life care. QoC scores were higher with later-stage dementia, but were not associated with the age, gender, race, relationship to the resident, or educational attainment of family decision-makers., Conclusion: Although family decision-makers for persons with advanced dementia rated quality communication with NH staff higher than that with clinicians, they reported poor quality end-of-life communication for both staff and clinicians. Clinicians simply did not perform many communication behaviors that contribute to high-quality end-of-life communication. These omissions suggest opportunities to clarify and improve interdisciplinary roles in end-of-life communication for residents with advanced dementia., (Copyright © 2018 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time., Design: Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial., Settings: Medical ICUs at four U.S. hospitals., Participants: Family members of patients with chronic critical illness (adults mechanically ventilated for ≥ 7 d and expected to remain ventilated and survive for ≥ 72 hr) who participated in the active arm of a communication intervention study., Interventions: Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner., Measurements and Main Results: Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens., Conclusions: 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.

Background: Decision-making about advanced cancer treatment is complex and may be influenced by patients' family context, including the presence of children. We explored how parental values and concerns motivate patients' preferences about aggressiveness of advanced cancer treatment as well as preferences for palliative care and hospice services., Methods: We conducted semi-structured interviews with 42 patients with advanced cancer who had at least one child under 18 years. We created and applied thematic codes. Descriptive analyses were used to report the number of participants who mentioned each code., Results: The majority of participants (29/42) reported that having children influenced their preferences for advanced cancer care. For most parents, extending life to maximize the time they had left to parent their children was important in guiding treatment preferences. Others prioritized preserving their physical condition and parental functioning and remaining physically close to their children. Many parents discussed life extension and parental functioning preservation as competing priorities. Most of the sample expressed interest in palliative care services and hospice, but responses by several participants reflected concerns about dying at home and lack of clarity about the role of early palliative care., Conclusions: Parents in our sample expressed that maximizing time with their children and preserving parental functioning were important concerns underlying their preferences for advanced cancer care. Future research should assess the palliative and end-of-life care needs and preferences of parents with advanced cancer, which may differ from those of non-parents. Copyright © 2016 John Wiley & Sons, Ltd., (Copyright © 2016 John Wiley & Sons, Ltd.)

Rationale: Information from clinicians about the expected course of the patient's illness is relevant and important for decision-making by surrogates for chronically critically ill patients on mechanical ventilation., Objectives: To observe how surrogates of chronically critically ill patients respond to information about prognosis from palliative care clinicians., Methods: This was a qualitative analysis of a consecutive sample of audio-recorded meetings from a larger, multisite, randomized trial of structured informational and supportive meetings led by a palliative care physician and nurse practitioner for surrogates of patients in medical intensive care units with chronic critical illness (i.e., adults mechanically ventilated for ≥7 days and expected to remain ventilated and survive for ≥72 h)., Measurements and Main Results: A total of 66 audio-recorded meetings involving 51 intervention group surrogates for 43 patients were analyzed using grounded theory. Six main categories of surrogate responses to prognostic information were identified: (1) receptivity, (2) deflection/rejection, (3) emotion, (4) characterization of patient, (5) consideration of surrogate role, and (6) mobilization of support. Surrogates responded in multiple and even antithetical ways, within and across meetings., Conclusions: Prognostic disclosure by skilled clinician communicators evokes a repertoire of responses from surrogates for the chronically critically ill. Recognition of these response patterns may help all clinicians better communicate their support to patients and families facing chronic critical illness and inform interventions to support surrogate decision-makers in intensive care units. Clinical trial registered with www.clinicaltrials.gov (NCT 01230099).

Purpose of Study: Dementia affects more than 5 million Americans, and is a leading cause of death. Family members of nursing home (NH) residents with advanced dementia report difficulty making decisions about care toward the end of life. As part of a randomized trial testing an intervention to improve decision making, this qualitative study aimed to understand how family decision makers experienced goal-based decision making in advance of the death of their relative., Design and Methods: This qualitative study was conducted as part of the goals of care clinical trial. Study participants (n = 16) were family decision makers in North Carolina whose relative with advanced dementia died after participating in the goals of care intervention. Semi-structured interviews were analyzed using a qualitative description approach., Results: Family members' experience of decision making and death differed based on the presence or absence of trusting relationships with NH staff. Family members who reported trust described a positive end-of-life experience and less need for prescribed goals of care discussions. In the absence of trust, family members reported that goals of care discussions were ignored by staff or created confusion., Implications: Among family members of persons who recently died from dementia in NHs, expressions of trust in staff were strongly related to perceptions of decision making about goals of care. Although goals of care discussions may potentially promote communication to earn trust, the presence of pre-existing trust ultimately influenced the decision making and end-of-life experiences of residents and families.

Background/aims: Ensuring fidelity to a behavioral intervention implemented in nursing homes requires awareness of the unique considerations of this setting for research. The purpose of this article is to describe the goals of care cluster-randomized trial and the methods used to monitor and promote fidelity to a goals of care decision aid intervention delivered in nursing homes., Methods: The cluster randomized trial tested whether a decision aid for goals of care in advanced dementia could improve (1) the quality of communication and decision-making, (2) the quality of palliative care, and (3) the quality of dying for nursing home residents with advanced dementia. In 11 intervention nursing homes, family decision-makers for residents with advanced dementia received a two-component intervention: viewing a video decision aid about goals of care choices and then participating in a structured decision-making discussion with the nursing home care plan team, ideally within 3 months after the decision aid was viewed. Following guidelines from the National Institutes of Health Behavior Change Consortium, fidelity was assessed in study design, in nursing home staff training for intervention implementation, and in monitoring and receipt of the intervention. We also monitored the content and timing of goals of care discussions., Results: Investigators enrolled 151 family decision-maker/resident dyads in intervention sites; of those, 136 (90%) received both components of the intervention, and 92%-99% of discussions addressed each of four recommended content areas-health status, goals of care, choice of a goal, and treatment planning. A total of 94 (69%) of the discussions between family decision-makers and the nursing home care team were completed within 3 months., Conclusion: The methods we used for intervention fidelity allowed nursing home staff to implement a goals of care decision aid intervention for advanced dementia. Key supports for implementation included design features that aligned with nursing home practice, efficient staff training, and a structured guide for goals of care discussions between family decision-makers and staff. These approaches may be used to promote fidelity to behavioral interventions in future clinical trials., (© The Author(s) 2016.)

Objectives: To examine feasibility, acceptability and preliminary effects of an advance care planning (ACP) intervention, SPIRIT-HF, in LVAD patients and their surrogates., Background: LVADs may improve HF symptoms but they are not curative. Thus, ACP is needed to prepare patients and surrogates for end-of-life (EOL) decision-making., Methods: Bridge to transplant and destination therapy LVAD patient-surrogate dyads were randomized to either SPIRIT-HF or usual care. Percentages of eligible dyads who were enrolled and completed the study determined feasibility. Analysis of interviews with SPIRIT dyads determined acceptability. Group comparisons of dyad congruence, patient's decisional conflict, and surrogate's decision-making confidence determined preliminary effects., Results: Of 38 eligible dyads, 29 (76%) were enrolled, randomized, and completed the study. The 14 intervention dyads characterized SPIRIT-HF as beneficial. All dyads demonstrated improvement in outcomes. However, SPIRIT-HF dyads tended toward greater congruence on patient EOL treatment goals., Conclusions: SPIRIT-HF is feasible and acceptable. Results will inform future trials., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes., Study Design: A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments., Setting & Participants: 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers., Intervention: Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later., Primary Outcomes: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence., Secondary Outcomes: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death., Primary Outcomes: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β=-0.01; 95% CI, -0.12 to 0.10)., Secondary Outcomes: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β=-1.13; 95% CI, -2.23 to -0.03), depression (β=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β=-5.75; 95% CI, -10.9 to -0.64) than controls., Limitations: Study was conducted in a single US region., Conclusions: SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes., (Copyright © 2015 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Importance: Serious illness impairs function and threatens survival. Patients facing serious illness value shared decision making, yet few decision aids address the needs of this population., Objective: To perform a systematic review of evidence about decision aids and other exportable tools that promote shared decision making in serious illness, thereby (1) identifying tools relevant to the treatment decisions of seriously ill patients and their caregivers, (2) evaluating the quality of evidence for these tools, and (3) summarizing their effect on outcomes and accessibility for clinicians., Evidence Review: We searched PubMed, CINAHL, and PsychInfo from January 1, 1995, through October 31, 2014, and identified additional studies from reference lists and other systematic reviews. Clinical trials with random or nonrandom controls were included if they tested print, video, or web-based tools for advance care planning (ACP) or decision aids for serious illness. We extracted data on the study population, design, results, and risk for bias using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) criteria. Each tool was evaluated for its effect on patient outcomes and accessibility., Findings: Seventeen randomized clinical trials tested decision tools in serious illness. Nearly all the trials were of moderate or high quality and showed that decision tools improve patient knowledge and awareness of treatment choices. The available tools address ACP, palliative care and goals of care communication, feeding options in dementia, lung transplant in cystic fibrosis, and truth telling in terminal cancer. Five randomized clinical trials provided further evidence that decision tools improve ACP documentation, clinical decisions, and treatment received., Conclusions and Relevance: Clinicians can access and use evidence-based tools to engage seriously ill patients in shared decision making. This field of research is in an early stage; future research is needed to develop novel decision aids for other serious diagnoses and key decisions. Health care delivery organizations should prioritize the use of currently available tools that are evidence based and effective.

Older patients and their families desire control over health decisions in serious illness. Experts recommend discussion of prognosis and goals of care prior to decisions about treatment. Having achieved longevity, older persons often prioritize other goals such as function, comfort, or family support--and skilled communication is critical to shift treatment to match these goals. Shared decision making is the ideal approach in serious illness. Older patients desire greater family involvement; higher rates of cognitive impairment mean greater dependency on surrogates to make decisions. Despite the importance of communication, fewer than half of older patients or families recall treatment discussions with clinicians, and poor quality communication adversely affects family satisfaction and patient outcomes. Direct audiorecording of clinical encounters and longitudinal studies of communication and treatment decisions have yielded important insights into the quality of clinical communication. Current clinical practice rarely meets standards for shared decision making. Innovative methods to record and use patient preferences show promise to overcome the limitations of traditional advance directives. Decision aids, intensive clinician training, and structured interpersonal communication interventions have all been shown to be effective to improve the quality of communication and decision making. Priorities for geriatric palliative care research, building on these insights, now include empirical testing of communication approaches for surrogates and for diverse populations, exploration of meaningful ways to communicate prognosis, and expansion of intervention research.

Objectives: To test whether a decision aid improves quality of decision-making about feeding options in advanced dementia., Design: Cluster randomized controlled trial., Setting: Twenty-four nursing homes in North Carolina., Participants: Residents with advanced dementia and feeding problems and their surrogates., Intervention: Intervention surrogates received an audio or print decision aid on feeding options in advanced dementia. Controls received usual care., Measurements: Primary outcome was the Decisional Conflict Scale (range: 1-5) measured at 3 months; other main outcomes were surrogate knowledge, frequency of communication with providers, and feeding treatment use., Results: Two hundred fifty-six residents and surrogate decision-makers were recruited. Residents' average age was 85; 67% were Caucasian, and 79% were women. Surrogates' average age was 59; 67% were Caucasian, and 70% were residents' children. The intervention improved knowledge scores (16.8 vs 15.1, P < .001). After 3 months, intervention surrogates had lower Decisional Conflict Scale scores than controls (1.65 vs 1.90, P < .001) and more often discussed feeding options with a healthcare provider (46% vs 33%, P = .04). Residents in the intervention group were more likely to receive a dysphagia diet (89% vs 76%, P = .04) and showed a trend toward greater staff eating assistance (20% vs 10%, P = .08). Tube feeding was rare in both groups even after 9 months (1 intervention vs 3 control, P = .34)., Conclusion: A decision aid about feeding options in advanced dementia reduced decisional conflict for surrogates and increased their knowledge and communication about feeding options with providers., (© 2011, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.)

Background: One in four Americans, and 70% of people who have dementia, will spend their final days in nursing home care. Clinical research, particularly clinical trials, rarely includes this population due to unique challenges in research methods and ethics. Families of advanced dementia patients make choices about tube feeding and other feeding options with limited access to information or communication. The cluster randomized trial, Improving Decision Making about Feeding Options for Dementia Patients, tests a decision aid intervention to improve the quality of decision making for this choice., Purpose: Our objectives are (1) to describe the methods used in this trial; (2) to describe challenges and strategies for effective nursing home and nursing home resident recruitment and retention; and (3) to describe research ethics approaches to minimize harms and maximize benefits for this population., Methods: The study is a cluster randomized trial of a decision aid to inform and support the choice between tube feeding and assisted oral feeding in advanced dementia. Study subjects are paired surrogate decision makers and residents with advanced dementia and feeding problems, enrolled from nursing homes in North Carolina., Results: This trial enrolled 256 paired surrogate decision makers and residents in 24 nursing home sites, and 99% completed participation through the 3-month study period. The research team had prior clinical and investigative experience in this setting, and used multiple strategies to recruit and retain nursing home sites, providers, surrogates, and the residents for whom they spoke. Informed consent and human subjects' protections were designed to address the vulnerability of this population., Limitations: Cluster randomization was necessary to avoid contamination between control and intervention subjects, but may introduce confounding by site and intracluster correlation effects in analyses., Conclusions: Strategies that facilitate nursing home recruitment, participant recruitment and protection of human subjects for a vulnerable population may be used by future investigators to expand the research evidence base for nursing home and dementia care.

Context: Intensive treatments intended to sustain life are often used for patients with advanced cystic fibrosis (CF). There are no guidelines for selecting patients whose survival and quality of life may be enhanced by such treatments or for communication with patients and caregivers about possible treatment outcomes., Objectives: We aimed to describe caregivers' perspectives on decision making for the use of intensive treatments for patients with advanced CF lung disease., Methods: We conducted semi-structured interviews with 36 caregivers of 36 patients who died of CF about treatment preference discussions and solicited recommendations for improving discussions., Results: Twenty (56%) patients received intensive treatments during the last week of life. Twenty-two (61%) caregivers reported ever having discussed intensive treatment preferences with a physician, and 17 (77%) of these discussions were initiated during an acute illness. Only 14 (39%) of all patients participated. Caregivers expressed less certainty about consistency of treatments with patient preferences when patients did not participate. Twenty-nine (81%) caregivers endorsed first discussing treatment preferences during a period of medical stability., Conclusions: Discussions about preferences for the use of intensive treatments for patients with CF often take place during episodes of acute illness and may be delayed until patients themselves are too ill to participate. Bereaved caregivers suggest first addressing intensive treatment preferences during a stable period so that patient preferences are understood and unwanted treatments are minimized., (Copyright © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Context: Lung transplantation extends survival for some patients with advanced cystic fibrosis, but it is complicated, has many potential risks, and its outcomes are difficult to predict. No standards exist for informed decision making about transplantation., Objective: To assess decision making from the perspective of caregivers of patients who faced the transplant decision before dying of cystic fibrosis or transplant complications., Design: Semistructured interviews with descriptive and qualitative content analysis., Participants: Twenty-eight caregivers of patients with cystic fibrosis who received care at our center and died between 1996 and 2006., Results: Of 28 patients who considered lung transplantation, 19 (68%) received transplants, 6 (21%) died while waiting for transplant, and 3 (11%) declined transplant. Three caregivers (11%) thought that the patient did not fully understand the reason for transplant referral. Five (18%) thought that the patient did not fully understand potential risks. Ten (36%) thought that alternatives were not fully understood. The only alternatives to transplant identified, progressive illness and the possibility of earlier death without transplant, were unacceptable to most. Thirteen caregivers (46%) reported that the patient thought that declining transplant was not an option. Caregivers described the decision as "easy" for 19 (68%), often expressing a sentiment of "do or die." Those who described the decision as "easy" recalled fewer elements of informed decision making., Conclusions: From caregivers' reports, patients with cystic fibrosis may not fully understand risks of and alternatives to lung transplantation. Because a strong desire to prolong life necessitates honest communication about potential outcomes, interventions are needed to facilitate high-quality decision making.

Purpose: To explore and identify communication and decision making with health care providers for African Americans living with cancer and for their families., Methods: We used focus group interviews to identify and explore cultural perceptions, expectations, and desires as they relate to quality of life domains., Participants: Of the 42 African American participants, 33 were women. Half of the participants (n = 21) were caregivers of a family member with cancer; the others were cancer survivors and some of them had also cared for a loved one with cancer., Results: Participants focused on effective communication and decision making as fundamental to overall quality of life. Furthermore, physicians were viewed as having the responsibility to establish and monitor effective communication with patients and families. Within the domain of effective communication, participants stressed that health care providers needed to know the person and family and to tailor communication with them based on that knowledge. Within the domain of decision making, participants emphasized having a sense of control over treatment choices. They also expressed concerns for populations made vulnerable by advanced age, poverty, or low levels of formal education., Discussion: Our participants indicated that relationship-centered care, in which one's sense of personhood is sought, acknowledged, and worked with, is foundational for effective communication and decision making.

Purpose: To compare expected outcomes with actual outcomes from tube feeding in adult patients., Subjects and Methods: This prospective cohort study was conducted in two North Carolina hospitals. Surrogates were interviewed shortly after feeding tube insertion and at 3- and 6-month follow-up; chart abstraction and death certificate review also were carried out. Participants were surrogate decision-makers for consecutive adult patients who received new feeding tubes., Results: There were 288 patients with surrogate decision-makers enrolled. Mean age was 65 years; 30% had a primary diagnosis of stroke, 16% neurodegenerative disorder, 20% head and neck cancer, and 30% other diagnoses. At 3 months, 21% of patients had died, and 6-month mortality was 30%. At 3 months, 38% of survivors were residing in a nursing home, and 27% had the feeding tube removed. Patients were impaired in most activities of daily living (ADLs) with little change over time. Medical complications were common: 25% of patients had decubitus ulcers at 3 months, and 24% had at least one episode of pneumonia. Perceived global quality of life was poor at 4.6 (on a 0-10 scale) at baseline, and surrogates anticipated this would improve to 8.0 with tube feeding. Family surrogates' expectations for improvement from the feeding tube were very high at baseline and remained so at 3 and 6 months., Conclusions: Families' high expectations of benefit from tube feeding are in contrast to clinical outcomes. Providers and families need better information about the outcomes of this common procedure.

Objectives: (1) To determine surrogates perceptions about who made the decision to place the feeding tube and who they would have preferred to have made the decision. (2) To determine surrogates' perceptions of the information they received to make this decision., Methods: Structured interviews with 246 surrogate decision-makers., Results: Fifty-five percent of surrogates felt that the decision was made primarily by the surrogate, but 75% would prefer that the decision be shared with the physician. Surrogates reported that they discussed the benefits (80%) and the risks (72%) of feeding tube placement and discussed what life would be like with the feeding tube (65%) and without the feeding tube (67%). They also reported being asked if they understood the information (85%) and their thoughts about placement (56%). Despite receiving this information, 28 to 41% reported wanting more information about these aspects., Conclusion: Surrogates would have preferred greater physician participation in decisions about feeding tube placement and many reported that their informational needs were not completely met., Practice Implications: These results suggest that physicians may be justified in taking a more active role in feeding tube decisions with surrogates and that many surrogates desire more information than is required by standards of informed decision making.

Efforts to improve end-of-life decision-making quality have emphasized the principle of individual autonomy to better ensure that patients receive care consistent with their preferences. This principle has primarily been defined through court decisions during the past 3 decades as a patient's right to refuse medical technologies and avoid life-prolonging treatments. However, autonomy as traditionally defined only serves a small segment of dying patients. Patients might not value autonomy or consider autonomy important but define it differently than decision-making self-determination. Some patients also think in terms of their care goals rather than individual treatment preferences. Patients' functional and cognitive abilities, age, racial and ethnic backgrounds, and desire to avoid burdening loved ones may influence attitudes and definitions regarding autonomy. To improve end-of-life decision-making for an increasingly multicultural and aging population, the following priorities should be set: (1) Increase the flexibility of advance care planning and decision-making strategies used with capable patients to encompass diverse perceptions of autonomy; and (2) Improve communication between physicians and patients' families when patients lack decision-making capacity to facilitate decision-making and address families' emotional burdens. The goal of these priorities is to promote understanding of patients' and families' decision-making preferences and goals and to minimize decision-making burdens on families.

ContextDespite increasing interest in advance care planning (ACP) and previous ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives.ObjectiveThe aim of this study was to develop a consensus definition of ACP for adults.MethodsWe convened a Delphi panel of multidisciplinary, international ACP experts consisting of 52 clinicians, researchers, and policy leaders from four countries and a patient/surrogate advisory committee. We conducted 10 rounds using a modified Delphi method and qualitatively analyzed panelists' input. Panelists identified several themes lacking consensus and iteratively discussed and developed a final consensus definition.ResultsPanelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients' values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: "Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness." The panel also described strategies to best support adults in ACP.ConclusionsA multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.

Summary: Little is known about caregivers' perspectives on deprescribing bisphosphonates for older adults with dementia. Caregivers agreed that fracture prevention was important for maintaining functional independence but acknowledged that changing goals of care may justify deprescribing. Conversations grounded in "what matters most" can align fracture prevention treatment with goals of care. Purpose: The long-term fracture prevention benefits of bisphosphonates may begin to be overshadowed by the potential burden of adverse effects and polypharmacy for older adults living with dementia as the disease progresses. We characterized factors that influence caregiver decision-making for continuing versus deprescribing bisphosphonates for persons living with dementia. Methods: We conducted 11 interviews with family or informal caregivers of older adults living with dementia in the community or in long-term care who had been treated with bisphosphonates. Interviews focused on experiences caring for someone who has experienced a fracture, perceived benefits and harms of bisphosphonates, and experiences with deprescribing. Analyses were conducted using a qualitative framework methodology guided by the Health Belief Model. Results: Most caregivers were male (n = 8), younger than 65 (n = 8) and were an adult child caregiver (n = 8). Three caregivers were Black and five were Latino/a. Attempts to maintain functional independence despite high likelihood of falls was frequently discussed as contributing to fracture risk, in this population. Many caregivers perceived fracture prevention treatment as important, while several noted that it may become less important near the end of life. Perceived benefits of fracture prevention treatment for persons with dementia included improved quality of life and maintaining independence. Although most indicated that bisphosphonates were well tolerated, gastrointestinal adverse effects, preference for fewer treatments, and dementia-related behaviors that interfere with medication administration may be reasons for deprescribing. Conclusion: Conversations grounded in caregiver experiences and "what matters most" may help optimize fracture prevention treatment for older adults with dementia. [ABSTRACT FROM AUTHOR]

The article highlights the significance of deprescribing for achieving goal-concordant care in older adults living with Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD). Topics covered include the challenges that clinicians may face in integrating deprescribing into goal-concordant care for AD/ADRD, and emerging opportunities that can help address the challenges and align prescribing with patient goals and preferences.

Nursing homes (NHs) provide care to residents with serious illness and related complex health care needs. As such, discussions about end-of-life care between NH staff and residents and families are necessary to ensure residents receive care consistent with their goals. Interventions such as video decision aids have been developed to promote discussions and improve advance care planning, but few studies have examined how NH characteristics may relate to the implementation of these interventions; such information might lead toward more use of successful interventions. The purpose of this study is to understand NH characteristics that are associated with the implementation of the Goals of Care (GOC) intervention, which combined a video decision aid with a structured discussion to guide decision-making in advanced dementia. A multiple case study. Staff surveys were conducted to examine factors related to implementation effectiveness in 11 NHs in North Carolina that participated in the GOC trial. Questions measured the dependent variable of implementation effectiveness: the consistency and quality of use of the GOC intervention. NH organizational characteristics were measured using publicly available data and an administrator survey. The analysis consisted of pattern matching logic. High management support aligned with implementation effectiveness within NHs. In addition, the within case pattern analysis indicated additional characteristics related to implementation effectiveness. Facility size, Medicare beds, residents' racial composition, and star rating were related to implementation effectiveness across 6 of the 11 NHs. NH financial resources, such as size and number of Medicare beds, may be important factors for successful implementation. NHs seeking to implement advance care planning interventions should focus on within and across NH differences, such as adequate management and financial support prior to implementation to increase the likelihood of implementation effectiveness. [ABSTRACT FROM AUTHOR]

Rationale: Surrogate decision-makers of patients with chronic critical illness (CCI) are at high risk for symptoms of post-traumatic stress disorder (PTSD). Whether patient health status after hospital discharge is a risk factor for surrogate PTSD symptoms is not known. Objectives: To determine the association between patient health status 90 days after the onset of CCI and surrogate symptoms of PTSD. Methods: We performed a secondary analysis of the data from a multicenter randomized trial of a communication intervention for adult patients with CCI and their surrogate decision-makers. Results: Surrogate PTSD symptoms were measured at 90 days using the Impact of Events Scale-Revised. For patients who were alive at 90 days, location was used as a marker of health status and included the following categories: 1) home (relatively good health and low acuity), 2) acute rehabilitation (moderate care needs and impairments, generally expected to improve), 3) skilled nursing facility (moderate care needs and impairments, generally not expected to improve significantly or quickly), 4) long-term acute care facility (persistently high acute care needs and functional impairment), and 5) readmission to an acute care hospital (suggesting the highest acuity of illness and care needs of the cohort). Patients who died before 90 days were categorized as deceased. In the analyses, 365 surrogates and 256 patients were included. Among patients, 49% were female, and the mean age was 59 years. Among surrogates, 71% were female, and the mean age was 51 years. A directed acyclic graph was constructed to identify covariates to be included in the model. Compared with symptoms seen among surrogates of patients living at home, heightened PTSD symptoms were seen among surrogates of patients who were readmitted to an acute care hospital (β coefficient, 15.9; 95% confidence interval [CI], 4.5 to 27.3) or had died (β coefficient, 14.8; 95% CI, 8.8 to 20.9) at 90 days. Conclusions: Surrogates of patients with CCI who have died or have been readmitted to an acute care hospital at 90 days experience increased PTSD symptoms as compared with surrogates of patients who are living at home. These patients and surrogates represent a readily identifiable group who may benefit from enhanced emotional support. [ABSTRACT FROM AUTHOR]

Context: Persons with late-stage dementia have limited access to palliative care.Objective: The objective of this study was to test dementia-specific specialty palliative care triggered by hospitalization.Methods: This pilot randomized controlled trial enrolled 62 dyads of persons with late-stage dementia and family decision-makers on admission to hospital. Intervention dyads received dementia-specific specialty palliative care consultation plus postacute transitional care. Control dyads received usual care and educational information. The primary outcome was 60-day hospital or emergency department visits. Secondary patient- and family-centered outcomes were patient comfort, family distress, palliative care domains addressed in the treatment plan, and access to hospice or community-based palliative care. Secondary decision-making outcomes were discussion of prognosis, goals of care, completion of Medical Orders for Scope of Treatment (MOST), and treatment decisions.Results: Of 137 eligible dyads, 62 (45%) were enrolled. The intervention proved feasible, with protocol completion ranging from 77% (family two-week call) to 93% (initial consultation). Hospital and emergency department visits did not differ (intervention vs. control, 0.68 vs. 0.53 transfers per 60 days, P = 0.415). Intervention patients had more palliative care domains addressed and were more likely to receive hospice (25% vs. 3%, P < 0.019). Intervention families were more likely to discuss prognosis (90% vs. 3%, P < 0.001) and goals of care (90% vs. 25%, P < 0.001) and to have a MOST at 60-day follow-up (79% vs. 30%, P < 0.001). More intervention families made decisions to avoid rehospitalization (13% vs. 0%, P = 0.033).Conclusion: Specialty palliative care consultation for hospitalized patients with late-stage dementia is feasible and promising to improve decision-making and some treatment outcomes. [ABSTRACT FROM AUTHOR]

Background: Nursing home (NH) residents with dementia experience high rates of intensive treatment near the end of life. Limited research examines whether treatment is concordant with goals of care (GOC). Objectives: We analyzed data from the GOC trial to describe family decision makers' preferred GOC and perceptions of goal-concordant care for NH residents with late-stage dementia We compared subsequent treatment orders when families chose a primary goal of comfort versus other goals. Design: We performed a secondary analysis of data from baseline and 9-month family decision-maker interviews and chart reviews. Setting and Participants: A total of 302 dyads of NH residents and family decision makers in 22 North Carolina NHs were enrolled. Measurements: In baseline and follow-up interviews, families reported on their and NH staff's primary GOC, and perceived prognosis and goal-concordant care. Chart reviews provided data on treatment orders, hospital transfers, and hospice, which were compared after selection of a primary goal of comfort versus other goals. Results: Family chose comfort as the primary goal for 66% of residents at baseline, and for nearly 80% by 9 months or death. At baseline, 49% perceived concordance with NH staff on the primary goal, and 69% at follow-up. In multivariate models, choice of comfort as the primary goal, versus other goals, was associated with half as many hospital transfers (0.11 vs. 0.25/90 person-days, confidence interval [−0.2 to −0.01]), but not with hospice or treatment orders. Conclusions: Most families chose comfort as the primary GOC. Further research is needed to translate this preference into comfort-focused treatment plans for late-stage dementia. Clinicaltrials.gov : NCT01565642 (3/26/12). [ABSTRACT FROM AUTHOR]

Importance: Family caregivers of patients with chronic critical illness experience significant psychological distress.Objective: To determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression.Design, Setting, and Participants: A multicenter randomized clinical trial conducted from October 2010 through November 2014 in 4 medical intensive care units (ICUs). Adult patients (aged ≥21 years) requiring 7 days of mechanical ventilation were randomized and their family surrogate decision makers were enrolled in the study. Observers were blinded to group allocation for the measurement of the primary outcomes.Interventions: At least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention) compared with provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group.Main Outcomes and Measures: The primary outcome was Hospital Anxiety and Depression Scale symptom score (HADS; score range, 0 [best] to 42 [worst]; minimal clinically important difference, 1.5) obtained during 3-month follow-up interviews with the surrogate decision makers. Secondary outcomes included posttraumatic stress disorder experienced by the family and measured by the Impact of Events Scale-Revised (IES-R; total score range, 0 [best] to 88 [worst]), discussion of patient preferences, hospital length of stay, and 90-day survival.Results: Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean HADS score, 12.2 vs 11.4, respectively; between-group difference, 0.8 [95% CI, -0.9 to 2.6]; P = .34). Posttraumatic stress disorder symptoms were higher in the intervention group (adjusted mean IES-R score, 25.9) compared with the control group (adjusted mean IES-R score, 21.3) (between-group difference, 4.60 [95% CI, 0.01 to 9.10]; P = .0495). There was no difference between groups regarding the discussion of patient preferences (intervention, 75%; control, 83%; odds ratio, 0.63 [95% CI, 0.34 to 1.16; P = .14]). The median number of hospital days for patients in the intervention vs the control group (19 days vs 23 days, respectively; between-group difference, -4 days [95% CI, -6 to 3 days]; P = .51) and 90-day survival (hazard ratio, 0.95 [95% CI, 0.65 to 1.38], P = .96) were not significantly different.Conclusions and Relevance: Among families of patients with chronic critical illness, the use of palliative care-led informational and emotional support meetings compared with usual care did not reduce anxiety or depression symptoms and may have increased posttraumatic stress disorder symptoms. These findings do not support routine or mandatory palliative care-led discussion of goals of care for all families of patients with chronic critical illness.Trial Registration: clinicaltrials.gov Identifier: NCT01230099. [ABSTRACT FROM AUTHOR]

Background: Care consistent with preferences is the goal of advance care planning (ACP). However, comparing written preferences to actual end-of-life care may not capture consistency of care with preferences. Objective: We evaluated four additional types of consistency, using prospective data on written preferences and active clinical decision making by patients and their surrogates. Methods: Secondary analysis of data was done from a trial of an ACP intervention for patient-surrogate dyads. Forty-five patients died during the trial and comprised the sample for the analysis. Sources of data included patients' preferences in a written goals-of-care tool, medical record reviews, and two-week postbereavement interviews with surrogates to complement medical record reviews. Results: Twenty-four patients (53.3%) received care consistent with written preferences and 11 (24.4%) inconsistent with written preferences. The remaining 10 patients (22.2%) died suddenly with no opportunity for treatment decision making. Eleven (24.4%) were able to participate in decision making with their surrogates; of those, 9 (81.8%) received care consistent with their expressed preferences. Twenty-two patients were incapacitated and thus the surrogate made treatment decisions alone; of those, 18 (81.8%) made decisions consistent with the patient's written preference. Conclusions: Simply comparing documented preferences for end-of-life care and medical records of care delivered does not adequately reflect the process of ACP and treatment decision making at the end of life. To understand consistency between preferences and end-of-life care, investigators need data on written and realtime expressed preferences. [ABSTRACT FROM AUTHOR]

Examines the frequency of life-sustaining treatment use by community physicians in North Carolina, who provide terminal care. Factors influencing treatment decisions in community-based practices; Concern about the quality of care for the dying; Telephone interviews with family informants; Decisions on advance care planning. INSET: Subjects and methods..

The article discusses a study which developed and tested a decision aid for surrogates of patients under prolonged mechanical ventilation. The study included 53 surrogate decision makers and 58 patients. Its primary outcomes include physician-surrogate discordance for expected patient survival, comprehension of medical information and communication quality. Study authors concluded that the decision aid they have developed is feasible and acceptable.

Context: Delivering goal-directed care is a hallmark of high-quality palliative care, but requires an understanding of preferences.Objectives: To describe and identify factors associated with level of care preferences among proxies of nursing home (NH) residents with advanced dementia.Methods: NH residents with advanced dementia and their proxies (N = 402 dyads) were recruited from 62 Boston-area facilities as part of an ongoing randomized clinical trial. At baseline, all proxies were asked to select which level of care they felt the resident should receive: intensive, basic, or comfort care. Multivariable logistic regression identified resident and proxy factors associated with a preference for comfort care (vs. basic or intensive medical care).Results: Proxy level of care preferences were: comfort, 62.2%; basic, 31.1%; and intensive medical care, 6.5%. In multivariable analyses, proxy perception that the resident had less than six months to live was most strongly associated with a preference for comfort-focused care (adjusted odds ratio 12.25, 95% CI 4.04-37.08). Additional factors significantly associated with a preference for comfort care included older resident age, worse resident cognitive impairment, and the proxy having been asked about goals of care preferences by a NH health care provider (adjusted odds ratio 1.71, 95% CI 1.07, 2.74).Conclusion: Most proxies select comfort as the preferred level of care for NH residents with advanced dementia. Discussions regarding prognosis, as well as inquiry about goals of care, are modifiable factors that may promote a preference for comfort care in this population. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: Decision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making. Design: Pre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up. Setting: Two NHs in North Carolina. Participants: Eighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker. Intervention: (1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team. Measurements: Surrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. Results: Eighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P < .001). At 3 months, they reported improved quality of communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P < .001). Conclusions: The decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention. [Copyright &y& Elsevier]

Abstract: Objectives: In advanced dementia, feeding problems are nearly universal, and families face difficult decisions about feeding options. Initial interviews for a randomized trial were used to describe surrogates’ perceptions of feeding options, and to determine whether a decision aid on feeding options in advanced dementia would improve knowledge, reduce expectation of benefit from tube feeding, and reduce conflict over treatment choices for persons with advanced dementia. Design: Semistructured interview with prestudy and poststudy design for surrogates in the intervention group. Setting: Twenty-four skilled nursing facilities across North Carolina participating in a cluster randomized trial. Participants: Two hundred and fifty-five surrogate decision makers for nursing home residents with advanced dementia and feeding problems, in control (n = 129) and intervention (n = 126) groups. Intervention: For intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions. Measurements: The interview included open-ended items asking surrogates to report advantages and disadvantages of tube feeding and assisted oral feeding. Knowledge of feeding options was measured with 19 true/false items and items measuring expectation of benefit from tube feeding. Surrogates reported which of these two feeding options they preferred for the person with dementia, and how confident they were in this choice; their level of conflict about the choice was measured using the decisional conflict scale. Results: Before the decision aid, surrogates described advantages and disadvantages of assisted oral feeding and tube feeding in practical, ethical, and medical terms. After review of the decision aid, intervention surrogates had improved knowledge scores (15.5 vs 16.8; P < .001), decreased expectation of benefits from tube feeding (2.73 vs 2.32; P = .001), and reduced decisional conflict (2.24 vs 1.91; P < .001). Surrogates preferred assisted oral feeding initially and reported more certainty about this choice after the decision aid. Conclusions: A structured decision aid can be used to improve decision making about feeding options in dementia care. [Copyright &y& Elsevier]