Association between strong patient-oncologist agreement regarding goals of care and aggressive care at end-of-life for patients with advanced cancer.

INTRODUCTION: The ability of oncologists to understand patients' goals of care is recognized as a key component of quality care. The purpose of this study is to examine the influence of patient-oncologist agreement regarding goals of care upon aggressive care at end of life (EOL) for patients with advanced cancer. METHODS: Patients with advanced cancer and their oncologists were interviewed at study enrollment and every 3 months thereafter until patient death or end of the study period (15 months). A 100-point visual analogue scale was used to represent goals of care, with quality of life (scored as 0) and survival (scored as 100) as anchors. Strong goal of care agreement for survival was defined as oncologist and patient dyadic goal of care scores that fell between 70 and 100 (100 = highest goal for survival) and for comfort, dyadic goal of care values that fell between 0 and 30 (0 = high goal for comfort). RESULTS: Two hundred and six patients and eleven oncologists provided data. At the last interview prior to death, 23.3% of dyads had strong goal of care agreement for either survival (8.3%) or comfort (15%) and 76.7% had no strong agreement. There was a significant association between aggressive care use and categories of dyadic agreement regarding goals of care (p = 0.024, Cramer's V = 0.15). CONCLUSIONS: A large percentage of oncologists did not understand their patients' EOL goals of care. While aggressive care aligned with categories of dyadic agreement for goals of care, high rates of aggressive care were reported.

Psychometric properties of a single-item visual analog scale measuring goals of care in patients with advanced cancer.

PURPOSE: The purpose of this study was to examine the psychometric properties of a single-item visual analog scale (VAS) to measure goals of care in patients with advanced cancer. METHODS: Data were obtained from 378 patients with diagnoses of advanced lung, gastrointestinal, or pancreatic cancer. Goal of care was measured at baseline and every 3 months until patient death or completion of the 15-month study period. A single-item VAS ranging from 0 (quality of life is all that matters) to 100 (length of life is all that matters) was used to measure patients' goals of care for all study subjects; a subsample of subjects also completed the Quality of Life-Length of Life scale which asked patients to select categories of preferences. Test-retest reliability (intra-class correlation) and construct validity (known-groups, convergent, divergent) were evaluated. RESULTS: At 9 and 12 months, the test-retest reliability for patients with stable symptoms (n = 107) was established with the ICC(1,3) = 0.81, p < .001. Known-groups (r = 0.99, p < .001), convergent (r = 0.78, p < .001), and divergent (r = .06, p = 0.24) validity all demonstrated evidence of good construct validity. CONCLUSIONS: Preliminary psychometric testing for a single-item VAS that measures goals of care in a sample of patients with advanced cancer met standard requirements for reliability and validity. While further testing with a larger sample size is recommended, the tool's use in the clinical area to assess cancer patients' goals of care is appropriate. Such a tool could facilitate goals of care discussions in the clinical area.

Closer: A videoconference intervention for distance caregivers of cancer patients.

Distance caregivers (DCGs) represent a growing demographic. The emotional burden of caregiving for a family member with cancer is amplified by the logistical challenges of providing support from afar. DCGs feel higher levels of distress, anxiety, and depression compared with local caregivers. Videoconference technology may alleviate both the emotional and practical burdens faced by DCGs. This is an ongoing randomized controlled trial in 32 outpatient ambulatory clinics at a large, urban, comprehensive cancer center. To date, 332 patient-DCG dyads have been enrolled. DCGs must have internet access and have been identified by the patient as a source of support. The intervention period is 4 months. DCGs are randomized to one of three arms: DCGs in Arm 1 receive four coaching sessions with an advanced practice nurse or social worker and four videoconference appointments during the oncologist-patient office visit. DCGs in Arm 2 participate in four videoconference appointments with the oncologist and patient, and Arm 3 is the control group, which receives access to information through a website. Primary outcome variables are DCG distress, anxiety, depression, burden, self-efficacy, and emotional support. These data are collected electronically at baseline, 4 months, and 6 months. Patient distress, anxiety, and depression are also assessed at these same intervals using brief in-person interviews. The change in each of the DCG outcomes over time will be examined by a repeated measures analysis of covariance.

Complexity Analysis of Decision-Making in the Critically Ill.

RATIONALE: Despite multiple trials of interventions to improve end-of-life care of the critically ill, there is a persistent lack of understanding of factors associated with barriers to decision-making at the end of life. OBJECTIVE: To apply the principles of complexity science in examining the extent to which transitions to end-of-life care can be predicted by physician, family, or patient characteristics; outcome expectations; and the evaluation of treatment effectiveness. METHODS: A descriptive, longitudinal study was conducted in 3 adult intensive care units (ICUs). Two hundred sixty-four family surrogates of patients lacking decisional capacity and the physicians caring for the patients were interviewed every 5 days until ICU discharge or patient death. MEASUREMENTS: Characteristics of patients, physicians, and family members; values and preferences of physicians and family; and evaluation of treatment effectiveness, expectations for patient outcomes, and relative priorities in treatment (comfort vs survival). The primary outcome, focus of care, was categorized as (1) maintaining a survival orientation (no treatment limitations), (2) transitioning to a stronger palliative focus (eg, some treatment limitations), or (3) transitioning to an explicit end-of-life, comfort-oriented care plan. MAIN RESULTS: Physician expectations for survival and future cognitive status were the only variables consistently and significantly related to the focus of care. Neither physician or family evaluations of treatment effectiveness nor what was most important to physicians or family members was influential. CONCLUSION: Lack of influence of family and physician views, in comparison to the consistent effect of survival probabilities, suggests barriers to incorporation of individual values in treatment decisions.

Aggressive End-of-Life Care and Caregiver Satisfaction for Patients With Advanced Cancer.

Aggressive end-of-life care in patients with advanced cancer is associated with poor experiences and outcomes. The purpose of the study was to examine the impact of aggressive end-of-life care on caregiver satisfaction for caregivers of bereaved advanced cancer patients. Data of 101 caregivers were gathered using a longitudinal, descriptive correlational design study. Postdeath interviews were conducted 2 months after the patient's death. The most common end-of-life care indicators were patient not enrolled in hospice or enrolled within 3 days of death, >1 hospitalization, and intensive care unit admission. More than one-third of patients received at least one of the aggressive end-of-life care indicators in the last 30 days of life. From the multiple linear regression analyses, patient intensive care unit admission and having more than one hospitalization significantly affected caregiver satisfaction with care. Understanding caregiver satisfaction with care may improve the clinical practice of nurses who have crucial role in patients' end-of-life care.

Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals With Multiple Sclerosis: A Randomized Pilot Study Trial.

BACKGROUND: Caregivers of people with multiple sclerosis (MS) report poor emotional outcomes yet few interventions have been tested. The goal of this study was to compare the effectiveness of a remotely delivered intervention with 2 arms (ie, website and telecoaching vs website only) aimed at reducing depression, anxiety, stress, and distress in informal caregivers of individuals with MS. METHODS: From March 2021 through August 2021, 151 care-givers were enrolled in the study. The intervention occurred over a 4-month period. The website plus telecoaching arm received (a) a monthly coaching session focused on information, skill building, and support that was delivered by a licensed social worker via videoconference or telephone, and (b) had access to a study-designed website for caregivers of individuals with MS. The website-only arm did not receive coaching sessions and had the same website access. Data were obtained at baseline, immediately after the intervention period, and 6 weeks after the intervention. RESULTS: A linear mixed-effects model using an autoregressive covariance structure was used. It showed that the group by time interaction was statistically significant for the overall composite emotion score (depression, anxiety, stress) (P = .037) and the stress subscale score (P = .047), and it indicated that the website plus telecoaching arm demonstrated greater effectiveness at reducing the overall composite emotion and stress subscale scores. CONCLUSIONS: Use of a remotely delivered psychoeducational intervention that included individual coaching sessions as well as website access demonstrated preliminary efficacy in improving emotional outcomes in caregivers of individuals with MS. Further testing of the intervention with a larger sample is recommended.

Neglect of quality-of-life considerations in intensive care unit family meetings for long-stay intensive care unit patients.

OBJECTIVE: To examine the frequency with which quality of life and treatment limitation were discussed in formal family meetings for long-stay intensive care unit patients with high risk for mortality and morbidity. DESIGN: Descriptive observational study. SETTING: Five intensive care units. PATIENTS: One hundred sixteen family surrogate decisionmakers of long-stay intensive care unit patients who participated in an intensive communication system that aimed to provide weekly meetings with family decisionmakers. The structure of each meeting was to address medical update, patient preferences, treatment plan, and milestones for evaluating the treatment plan. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We audiotaped initial family meetings for 116 family decisionmakers for a total of 180 meetings. On average, meetings were 24 mins long with a majority of time being devoted to nonemotional speech and little (12%) spent discussing patient preferences. Quality of life was discussed in 45% and treatment limitation in 23% of all meetings. Quality-of-life discussions were more likely to occur when patients were admitted to a medical intensive care unit (odds ratio [OR] 5.9; p = .005), have a family decisionmaker who is a spouse (OR 9.4; p = .0001), were older (OR 1.04; p = 01), have a shorter length of stay (OR 0.93; p = .001), and have a family decisionmaker who was a spouse (OR 5.1; p = .002). For those with a treatment limitation discussion, 67% had a do-not-resuscitate order, 40% were admitted to a medical intensive care unit, 56% had a family decisionmaker who had been their caregiver, and 48% of their family decisionmakers were their children. CONCLUSIONS: To guide discussion with families of the subset of intensive care unit patients with high risk of mortality and long-term morbidity, quality of life was not consistently addressed. Continued efforts to assist clinicians in routinely including discussions of quality-of-life outcomes is needed.

Work productivity and health of informal caregivers of persons with advanced cancer.

The purpose of this study was to describe health promotion behaviors and work productivity loss in informal caregivers of individuals with advanced stage cancer. Using a cross-sectional, correlational design, 70 caregivers completed measures of health behaviors, mood, social support, and burden. Absenteeism and presenteeism were evaluated in employed caregivers (n = 40). Caregivers reported low levels of physical activity. The mean percentage of work productivity loss due to caregiving was 22.9%. Greater work productivity loss was associated with greater number of caregiving hours, higher cancer stage, married status, and greater anxiety, depression, and burden related to financial problems, disrupted schedule, and health. Nurses should assess caregivers and provide health promotion interventions, which may ultimately reduce the economic impact of caregiving.

Psychoeducational Interventions for Caregivers of Persons With Multiple Sclerosis: Protocol for a Randomized Trial.

BACKGROUND: Of the approximately 1 million people living with multiple sclerosis in the United States, more than half receive informal, unpaid care or support from family or friends (caregivers). These caregivers report high levels of stress, anxiety, and negative emotions. Few researchers have conducted psychoeducational interventions for these caregivers. OBJECTIVE: This paper presents a protocol for a randomized clinical trial that aims to test the efficacy of two interventions for improving stress, anxiety, depression, and negative emotions for caregivers of persons with multiple sclerosis. METHODS: Participants included any self-identified family or friend caregiver of a person with multiple sclerosis. Data collection began in April 2021 and is expected to continue until November 2021. Participants will be randomized to receive either a website-only or a website-coaching intervention delivered for 6 weeks. Data will be collected at baseline, 6 weeks after baseline (after delivery of intervention), and 6 weeks later. RESULTS: The protocol was approved by the institutional review board of the Case Western Reserve University on January 21, 2021 (protocol 20201484). As of May 2021, 66 participants were enrolled. CONCLUSIONS: Our findings will have implications for identifying the efficacy of two types of interventions developed for caregivers of persons with multiple sclerosis to reduce negative psychological outcomes associated with caregiving. TRIAL REGISTRATION: ClinicalTrials.gov NCT04662008; http://clinicaltrials.gov/ct2/show/NCT04662008. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/30617.

Videoconference Intervention for Distance Caregivers of Patients With Cancer: A Randomized Controlled Trial.

PURPOSE: Approximately 20% of caregivers (CGs) live > 1 hour away from the patient and are considered distance caregivers (DCGs) who often report higher distress and anxiety than local CGs. The purpose of this study was to test the effectiveness of an intervention aimed at reducing anxiety and distress in DCGs of patients with cancer. METHODS: This randomized controlled trial enrolled DCGs of patients with all cancer types who were being seen monthly by oncologists in outpatient clinics. There were three arms of the intervention delivered over a 4-month period: arm 1 (a) received 4 monthly videoconference-tailored coaching sessions with an advanced practice nurse or social worker focused on information and support, (b) participated in patient's appointments with the oncologist via videoconference over the 4-month study period, and (c) had access to a website designed for DCGs. Arm 2 did not receive the coaching sessions but received the other two components, and arm 3 received access to the DCG website only. RESULTS: There were 302 DCGs who provided pre- and postintervention data. There were significant anxiety by group (P = .028 and r = 0.16) and distress by group interactions (P = .014 and r = 0.17). Arm 1 had the greatest percentage of DCGs who demonstrated improvement in anxiety (18.6%) and distress (25.2%). CONCLUSION: Coaching and use of videoconference technology (to join the DCG into the patient-oncologist office visit) were effective in reducing both anxiety and distress for DCGs. These components could be considered for local CGs who-with COVID-19-are unable to accompany the patient to oncologist visits.

Understanding of Health-related Decision-making Terminology Among Cancer Caregivers.

Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.

Videoconferencing Empowers Distance Caregivers to Be More Involved in Care.

Distance caregiving is a relatively new phenomenon associated with today's increasingly mobile society. Distance caregivers (DCGs)-those unable to attend a family member's oncology appointments due to distance-often miss out on supportive services offered to the patient and local family and must rely on secondhand information to keep track of the patient's plan of care. The Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio, is testing a program to address the needs of this unique demographic by incorporating videoconferencing into patient visits.

Analyzing Goals of Care in Advanced Cancer Patients and Their Family Caregivers: Evidence-based Research.

OBJECTIVE: The study objective was to determine concordance between patients and family caregivers' preferences for quality or length of life over time. BACKGROUND: Patients with advanced cancer are confronted with difficult decisions throughout their course of treatment and at end of life (EOL). These decisions can be influenced by their family caregivers' preferences for the patient's cancer treatment. METHODS: Using a longitudinal, descriptive study design from an on-going study, data were collected on an adult sample of patients with advanced stage GI or lung cancers and their family caregivers (n=237). Using a one item visual analog scale (0-100 with higher number indicating a preference for length of life over quality of life), patients and family caregivers were asked "regarding your/your loved one's care, what is most important to you right now?" Data were collected every 3 months until 15 months or patient's death. RESULTS: At enrollment, the preference scores between patients (48.5) and family caregivers (42.6) were closely aligned. At the last assessment prior to death, these scores diverged with the caregivers favoring goals associated with quality of life over length of life (p=.02). DISCUSSION: Patients and family caregivers have differing preferences and these goals of care can change over time. Attention to these differences could be used to guide conversations between patients and family caregivers regarding preferences at EOL.

Family and Nurse Prognostication in Chronic Critical Illness.

AIMS: The aim of this study was to describe similarities and differences over time in expectations held by family members of long-term critically ill patients and the nurses caring for those patients. MATERIALS: In addition to demographic data, outcome expectations of family decision makers and ICU nurses were obtained by asking each participant to indicate expectations for the patient, 6 months in the future, for survival, cognition, and functional status. Families also were asked what kind of information was most important in understanding the patient's condition and what was most important in making decisions. METHODS: This was a descriptive correlational analysis. Nurses and family members were surveyed on the 3rd-5th day of the patient's stay, and every 5 days until discharge or death. Correlations between nurse and family predictions were examined using Pearson R. Repeated measures analysis of variance (RMANOVA) was used to explore the relationship between the family member's rating of what was most important in the care of the patient (survival vs. quality of life) and that individual's prediction of the likelihood of survival, over time. RESULTS: Family members consistently predicted better outcomes than nurses, with >80% of families predicting a high likelihood of survival, while <50% of nurses thought survival probability was high. There were similar differences in expectations for functional status and cognition. Between 14% and 23% of families indicated it was talking with the nurses that were most important. CONCLUSIONS: Results suggest a need for design and tests of nurse interventions aimed at improving family understanding of patient prognosis and future outcomes.

Differences in Predictions for Survival and Expectations for Goals of Care between Physicians and Family Surrogate Decision Makers of Chronically Critically Ill Adults.

The purpose of this study was to determine the accuracy and concordance between physicians (MDs) and family surrogate decision makers (FSDMs) in predicting 3 month post-hospital patient mortality and concordance in identifying patient goals of care. A prospective cohort study was conducted in 3 intensive care units (ICUs). Two-hundred and sixty-four FSDMs and 54 attending MDs of patients who had resided in the ICU for >3 days were enrolled in the study. Expectation for mortality was measured dichotomously and goals of care were measured using a continuous visual analog scale. A value of 50 represented equal weight placed on goals of survival and QOL. Both MDs and FSDMs had mortality predictions that were lower than actual mortality. For MDs and FSDMs, their mortality predictions were most accurate at study enrollment. Discordance between MD and FSDM goals of care ranged from 36.4% at enrollment to 55.4% 15 days later (p=0.003). Our findings of optimistic prognosis for survival are consistent with the work of others. Our high rate of discordance regarding goals of care provided support for the need to establish standard processes to assure that values of patients and families are solicited and incorporated into treatment discussions for long-stay ICU patients.

The Accuracy of Nurses' Predictions for Clinical Outcomes in the Chronically Critically Ill.

BACKGROUND: Accurately predicting survivorship of patients in the intensive care unit is known to be difficult. Previous research has shown that nurses are more likely to recognize futile medical care than other disciplines. The purpose of this study was to describe the accuracy of nurse's predictions for survival of patients who are chronically critically ill (CCI). METHODS: Using a secondary data analysis from a longitudinal, descriptive study, we evaluated nurses' predictions for survival at admission and until ICU discharge or patient death. RESULTS: Nurses were able to more accurately predict survival of CCI patients than death and prognostication appeared to improve with prolonged ICU stays. CONCLUSION: This is the first longitudinal study that focused on nurse prognostication in a chronically critically ill patient population. Future research should explore the relationship between ICU nurse characteristics and the accuracy of survival predictions.

Assessing nutritional status in chronically critically ill adult patients.

BACKGROUND: Numerous methods are used to measure and assess nutritional status of chronically critically ill patients. OBJECTIVES: To discuss the multiple methods used to assess nutritional status in chronically critically ill patients, describe the nutritional status of chronically critically ill patients, and assess the relationship between nutritional indicators and outcomes of mechanical ventilation. METHODS: A descriptive, longitudinal design was used to collect weekly data on 360 adult patients who required more than 72 hours of mechanical ventilation and had a hospital stay of 7 days or more. Data on body mass index and biochemical markers of nutritional status were collected. Patients' nutritional intake compared with physicians' orders, dieticians' recommendations, and indirect calorimetry and physicians' orders compared with dieticians' recommendations were used to assess nutritional status. Relationships between nutritional indicators and variables of mechanical ventilation were determined. RESULTS: Inconsistencies among nurses' implementation, physicians' orders, and dieticians' recommendations resulted in wide variations in patients' calculated nutritional adequacy. Patients received a mean of 83% of the energy intake ordered by their physicians (SD 33%, range 0%-200%). Patients who required partial or total ventilator support upon discharge had a lower body mass index at admission than did patients with spontaneous respirations (Mann-Whitney U = 8441, P = .001). CONCLUSIONS: In this sample, the variability in weaning progression and outcomes most likely reflects illness severity and complexity rather than nutritional status or nutritional therapies. Further studies are needed to determine the best methods to define nutritional adequacy and to evaluate nutritional status.

Relationship Between Physical and Psychological Status of Cancer Patients and Caregivers.

The purpose of this study was to describe the relationship between patient physical and emotional status and caregiver mood state for patients with advanced cancer. Data were collected from 299 cancer patients and their caregivers from a cancer center. We used a longitudinal design and collected data through interviews. The relationships between patient and caregiver emotional states over time were moderate and statistically significant at all three points in time (p values = .012-.0001). Patient physical and emotional status predicted caregiver mood state at all points in time (ßs = -.22 to -.25) and caregiver mood state at baseline predicted patient emotional status at 3 months (ß = -.16, p = .013). Relationships between patient emotional status and caregiver mood state were moderately strong. Addressing the emotional needs of both patients and caregivers has the potential to yield improved emotional outcomes for both over time.

Knowledge, attitudes, and predictors of advance directive discussions of registered nurses.

The purpose of this study was to describe nurses' knowledge, attitudes, and experiences regarding advance directives. A secondary purpose was to examine predictors of advance directive discussions between nurses and patients. Seven-hundred and nineteen respondents, randomly selected from a list of registered nurses in the state of Ohio, completed mailed questionnaires. Descriptive t test, chi-square, and logistic regression statistics were used in the data analyses. The respondents were knowledgeable and possessed positive attitudes about advance directives. Higher self-perceived confidence in advance directive discussion skills and the experience of caring for at least one patient with a current advance directive were found to be significant predictors of advance directive discussions. These findings suggest that experience with advance directives documents is critical for nurses' comfort and that developing interventions to further nurses' confidence in their discussion skills may increase advance directive discussions.

Multimedia decision support intervention: a promising approach to enhance the intention to complete an advance directive among hospitalized adults.

PURPOSE: We examined the acceptability and initial efficacy of a multimedia decision support (MDS) intervention to improve intention to complete an advanced directive (AD) among hospitalized adults following an episode of critical illness. DATA SOURCES: We used comparative quasi-experimental posttest only design. Forty-nine hospitalized adults, recovering from a critical illness, received either MDS or AD educational brochure. Demographic characteristics and self-report measures of AD knowledge were captured at baseline and used as covariates. Helpfulness of the intervention (acceptability) and the outcome variable, intention to complete an AD decision, were assessed after exposure to the MDS intervention or educational brochure (information-only control condition). CONCLUSIONS: The MDS was a more acceptable form of education compared to a brochure. After adjusting for covariates, participants exposed to the MDS intervention were 24.7 times more likely to intend to complete an AD compared to those who were assigned to the information-only control condition. IMPLICATIONS FOR PRACTICE: This pilot study establishes the acceptability and initial efficacy of the MDS intervention among individuals with critical illness, who are at high risk for hospital readmission life-sustaining treatment. This study illuminates a teachable moment in which patients are more receptive to interventions to complete an AD.