Family members' perceptions of inpatient palliative care consult services: a qualitative study.

BACKGROUND: Family members are commonly involved in end-of-life decision making and typically involved in inpatient palliative care consultations. Although much research has documented patient outcomes following inpatient palliative care consultation, little is known about family member perceptions of the consultation. AIM: The purpose of this study was to determine how inpatient palliative care consultations impacted family members' understanding of the patient's condition, knowledge of available care options, and decision-making ability. DESIGN: An exploratory, qualitative study was conducted employing individual interviews among family members of seriously ill patients, recruited purposively. Interviews were conducted in person, at the hospital, or via telephone, using a semistructured protocol. SETTING/PARTICIPANTS: Family members of seriously ill patients were recruited from a nonprofit, community hospital. RESULTS: Interviews were conducted among 23 family members. Four themes were identified and included: perceived qualities of the inpatient palliative care consultation, family readiness, impact on decision-making process, and focus on comfort and quality of life. While most comments reflected positive aspects of the inpatient palliative care consult, such as improved pain control and communication, and increased access to medical professionals and time to discuss patient conditions, some themes reflected a lack of adequate preparation for the inpatient palliative care consultation and readiness for discussing prognosis. CONCLUSION: Family members report discussion with the inpatient palliative care team results in improved communication and knowledge, which contributes to decision-making ability. However, palliative care consultation may be improved by developing stronger protocols for introducing palliative care and by including the attending physician in the process to preclude conflicting, inconsistent information and recommendations.

Why not just ask the resident?

This research evaluated a draft preference assessment tool (draft-PAT) designed to replace the current Customary Routine section of the Minimum Data Set (MDS) for nursing homes. The draft-PAT was tested with a sample of nursing home residents to evaluate survey-level administration time and noncompletion rates, as well as item-level nonresponse rates, response distributions, and test-retest reliability. Modifications to the draft-PAT were then retested with a subsample of residents. Completion times were brief (generally less than 10 minutes), and only a small percentage of residents were unable to complete the interview. Item-level nonresponse rates were low for the draft-PAT (0% to 8%) and even lower during retesting for items advanced to the national field trial (0% to 4%). Item response distributions indicated reasonable use of all options across both testing occasions, and item-level test-retest reliability was high. This study found that nursing home residents can reliably report their preferences. Eighteen items from the modified draft-PAT were advanced to the national field trial of the MDS 3.0. Inclusion of the PAT in the MDS revision underscores increased emphasis on including residents' voice in the assessment process.

What the resident meant to say: use of cognitive interviewing techniques to develop questionnaires for nursing home residents.

PURPOSE: Emphasis on consumer-centered care for frail and institutionalized older adults has increased the development and adaptation of surveys for this population. Conventional methods used to pretest survey items fail to investigate underlying sources of measurement error. However, the use of the cognitive interview (CI), a method for studying how respondents answer survey items, is not well established or documented in this population. This study demonstrates how CIs can be used to improve questionnaires intended for nursing home residents. DESIGN AND METHODS: CIs were conducted with 29 nursing home residents in order to identify potential problems with prospective survey items. We used scripted probes to standardize the interviews and adapted the Question Appraisal System to enumerate and classify the problems discovered. RESULTS: We fielded between one and five versions of each item in an iterative process that identified 61 item-specific problems. Additionally, residents' cognitive responses suggested that some screened their answers on the basis of perceived physical and environmental limitations, and some had difficulty answering items about preferences that fluctuate day to day. These findings led us to modify the items and response set to simplify the respondents' cognitive task. IMPLICATIONS: This study illustrates how CI techniques can be used to understand residents' comprehension of and response to survey items.

Physician and nurse perceptions of a new inpatient palliative care consultation project: implications for education and training.

BACKGROUND: Few studies have examined ease of integrating palliative care programs into hospital culture. The purpose of this article is to report findings from focus groups conducted among physicians and nurses to elicit their perceptions of an inpatient palliative care team consultation service after 1 year of operation. METHODS: The study consisted of four homogeneous focus groups drawn from a purposive sample of physicians (2 groups; total n = 16) and nurses (2 groups; n = 17) at a large urban managed care center. Structured interview protocols were used to elicit participant perceptions regarding the impact of implementation. Focus groups were audiotaped and transcribed verbatim. We analyzed the data using grounded theory techniques to elicit themes and subthemes. RESULTS: Five major themes emerged regarding the positive and/or transformational impact of the program on patient/family services, medical staff, the hospital, quality of care, and time. Physician and staff observations regarding perceived barriers to integration included subthemes pertaining to the sharing of information, patient/family resistance and cultural differences, and the need for increased services. CONCLUSIONS: The vast majority of comments expressed were related to positive aspects of the program. However, barriers exist that prevent some terminally ill patients from receiving these services. Findings from this study have implications for the need for education and training among providers on palliative and hospice services and, in particular, on the benefits of an inpatient palliative care team for patients, regardless of their attitudes toward end-of-life care programs.

A cognitive training program based on principles of brain plasticity: results from the Improvement in Memory with Plasticity-based Adaptive Cognitive Training (IMPACT) study.

OBJECTIVES: To investigate the efficacy of a novel brain plasticity-based computerized cognitive training program in older adults and to evaluate the effect on untrained measures of memory and attention and participant-reported outcomes. DESIGN: Multisite randomized controlled double-blind trial with two treatment groups. SETTING: Communities in northern and southern California and Minnesota. PARTICIPANTS: Community-dwelling adults aged 65 and older (N=487) without a diagnosis of clinically significant cognitive impairment. INTERVENTION: Participants were randomized to receive a broadly-available brain plasticity-based computerized cognitive training program (intervention) or a novelty- and intensity-matched general cognitive stimulation program modeling treatment as usual (active control). Duration of training was 1 hour per day, 5 days per week, for 8 weeks, for a total of 40 hours. MEASUREMENTS: The primary outcome was a composite score calculated from six subtests of the Repeatable Battery for the Assessment of Neuropsychological Status that use the auditory modality (RBANS Auditory Memory/Attention). Secondary measures were derived from performance on the experimental program, standardized neuropsychological assessments of memory and attention, and participant-reported outcomes. RESULTS: RBANS Auditory Memory/Attention improvement was significantly greater (P=.02) in the experimental group (3.9 points, 95% confidence interval (CI)=2.7-5.1) than in the control group (1.8 points, 95% CI=0.6-3.0). Multiple secondary measures of memory and attention showed significantly greater improvements in the experimental group (word list total score, word list delayed recall, digits backwards, letter-number sequencing; P<.05), as did the participant-reported outcome measure (P=.001). No advantage for the experimental group was seen in narrative memory. CONCLUSION: The experimental program improved generalized measures of memory and attention more than an active control program.