Natalie C. Ernecoff

Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis

Importance The use of palliative care programs and the number of trials assessing their effectiveness have increased. Objective To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. Data Sources MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. Study Selection Randomized clinical trials of palliative care interventions in adults with life-limiting illness. Data Extraction and Synthesis Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-palliative care scale (FACIT-Pal) instrument (range, 0-184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0-90 [best-worst]; MCID, 5.7 points). Main Outcomes and Measures Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. Results Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95% CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, -0.66; 95% CI, -1.25 to -0.07; ESAS mean difference, -10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated but remained statistically significant (standardized mean difference, 0.20; 95% CI, 0.06 to 0.34; FACIT-Pal mean difference, 4.94), whereas the association with symptom burden was not statistically significant (standardized mean difference, -0.21; 95% CI, -0.42 to 0.00; ESAS mean difference, -3.28). There was no association between palliative care and survival (hazard ratio, 0.90; 95% CI, 0.69 to 1.17). Palliative care was associated consistently with improvements in advance care planning, patient and caregiver satisfaction, and lower health care utilization. Evidence of associations with other outcomes was mixed. Conclusions and Relevance In this meta-analysis, palliative care interventions were associated with improvements in patient QOL and symptom burden. Findings for caregiver outcomes were inconsistent. However, many associations were no longer significant when limited to trials at low risk of bias, and there was no significant association between palliative care and survival.

The post illumination pupil response is reduced in seasonal affective disorder

Individuals with seasonal affective disorder (SAD) may have a decreased retinal sensitivity in the non-image forming light-input pathway. We examined the post illumination pupil response (PIPR) among individuals with SAD and healthy controls to identify possible differences in the melanopsin signaling pathway. We also investigated whether melanopsin gene (OPN4) variations would predict variability in the PIPR. Fifteen SAD and 15 control participants (80% women, mean age 36.7 years, S.D.=14.5) were assessed in the fall/winter. Participants were diagnosed based on DSM-IV-TR criteria. Infrared pupillometry was used to measure pupil diameter prior to, during, and after red and blue stimuli. In response to blue light, the SAD group had a reduced PIPR and a lower PIPR percent change relative to controls. The PIPR after the blue stimulus also varied on the basis of OPN4 I394T genotype, but not OPN4 P10L genotype. These findings may indicate that individuals with SAD have a less sensitive light input pathway as measured by the PIPR, leading to differences in neurobiological and behavioral responses such as alertness, circadian photoentrainment, and melatonin release. In addition, this sensitivity may vary based on sequence variations in OPN4, although a larger sample and replication is needed.

Is Dying in an ICU a Sign of Poor Quality End-of-Life Care?

As efforts to improve end-of-life care have increased, policymakers and administrators have sought quality measures to evaluate clinicians’ and hospitals’ performance. These efforts are a critical step toward achieving lasting and widespread improvements in care near the end of life. Quality measures influence policy and practice by serving as the basis for public reporting, reimbursement, and accreditation. In addition, quality metrics endorsed by authoritative organizations carry normative weight: they influence how people define good (and bad) medical care. Therefore, quality measures should be based on strong clinical evidence and should be tightly linked to outcomes that are important to patients or society. Resource allocation considerations may also be relevant in formulating end-of-life quality metrics. However, there is considerable controversy on this point and a detailed discussion is beyond the scope of this commentary. One metric that has been proposed as a marker of poor end-of-life care is a patient’s death in an intensive care unit (ICU) or within a short period of time (eg, 1 month) after discharge from an ICU. For example, a recent article evaluating the impact of advance directives on the quality of end-of-life care defined “ICU admission in the last month of life” as poor quality end-of-life care. In this formulation, the quality metric is a per-patient determination, in the sense that every ICU death is judged individually to represent poor quality end-of-life care. This per-patient metric is to be contrasted with a population-based metric, which makes no judgments about individual cases and instead evaluates the proportion of a population that experiences the outcome of interest (eg, 10% of Medicare beneficiaries being admitted to an ICU in the month prior to death). To inform the current policy debate about endof-life quality metrics, we will examine whether a per-patient measure of receipt of ICU care in the last month of life should be an end-of-life quality metric. We argue that the per-patient formulation does not satisfy basic requirements of high quality quality metrics and that its use could have unintended negative consequences on the quality of care in ICUs. We summarize what is known about patients’ preferences for care in the context of critical illness and highlight the problems that might arise if this metric, originally proposed as a population-level metric for patients in the very latest stages of advanced cancer, is applied as a per-patient metric to a heterogeneous group of patients with acute critical illness. Finally, we examine the potential to refine the metric to overcome these concerns.

Knowledge, attitudes, and preferences of healthy young adults regarding advance care planning: a focus group study of university students in Pittsburgh, USA

BackgroundTo date, research and promotion regarding advance care planning (ACP) has targeted those with serious illness or the elderly, thereby ignoring healthy young adults. The purpose of this study was to explore young adults’ knowledge, attitudes, and preferences regarding advance care planning (ACP) and medical decision-making. Further, we aimed to understand the potential role of public health to encourage population-based promotion of ACP.MethodsBetween February 2007 and April 2007, we conducted six focus groups comprising 56 young adults ages 18–30. Topics explored included (1) baseline knowledge regarding ACP, (2) preferences for ACP, (3) characteristics of preferred surrogates, and (4) barriers and facilitators to completing ACP specific to age and individuation. We used a qualitative thematic approach to analyze transcripts.ResultsAll participants desired more information regarding ACP. In addition, participants expressed (1) heterogeneous attitudes regarding triggers to perform ACP, (2) the opinion that ACP is a marker of individuation, (3) the belief that prior exposure to illness plays a role in prompting ACP, and (4) an appreciation that ACP is flexible to changes in preferences and circumstances throughout the life-course.ConclusionYoung adults perceive ACP as a worthwhile health behavior and view a lack of information as a major barrier to discussion and adoption. Our data emphasize the need for strategies to increase ACP knowledge, while encouraging population-level, patient-centered, healthcare decision-making.

Developing a Simulation to Study Conflict in Intensive Care Units

RATIONALE Although medical simulation is increasingly being used in healthcare education, there are few examples of how to rigorously design a simulation to evaluate and study important communication skills of intensive care unit (ICU) clinicians. OBJECTIVES To use existing best practice recommendations to develop a medical simulation to study conflict management in ICUs, then assess the feasibility, acceptability, and realism of the simulation among ICU clinicians. METHODS The setting was a medical ICU of a tertiary care, university hospital. Participants were 36 physicians who treat critically ill patients: intensivists, palliative medicine specialists, and trainees. Using best-practice guidelines and an iterative, multidisciplinary approach, we developed and refined a simulation involving a critically ill patient, in which the patient had a clear advance directive specifying no use of life support, and a surrogate who was unwilling to follow the patients preferences. ICU clinicians participated in the simulation and completed surveys and semistructured interviews to assess the feasibility, acceptability, and realism of the simulation. MEASUREMENTS AND MAIN RESULTS All participants successfully completed the simulation, and all perceived conflict with the surrogate (mean conflict score, 4.2 on a 0-10 scale [SD, 2.5; range, 1-10]). Participants reported high realism of the simulation across a range of criteria, with mean ratings of greater than 8 on a 0 to 10 scale for all domains assessed. During semistructured interviews, participants confirmed a high degree of realism and offered several suggestions for improvements. CONCLUSIONS We used existing best practice recommendations to develop a simulation model to study physician-family conflict in ICUs that is feasible, acceptable, and realistic.

Cognitive and behavioral predictors of light therapy use.

OBJECTIVE Although light therapy is effective in the treatment of seasonal affective disorder (SAD) and other mood disorders, only 53-79% of individuals with SAD meet remission criteria after light therapy. Perhaps more importantly, only 12-41% of individuals with SAD continue to use the treatment even after a previous winter of successful treatment. METHOD Participants completed surveys regarding (1) social, cognitive, and behavioral variables used to evaluate treatment adherence for other health-related issues, expectations and credibility of light therapy, (2) a depression symptoms scale, and (3) self-reported light therapy use. RESULTS Individuals age 18 or older responded (n = 40), all reporting having been diagnosed with a mood disorder for which light therapy is indicated. Social support and self-efficacy scores were predictive of light therapy use (ps<.05). CONCLUSION The findings suggest that testing social support and self-efficacy in a diagnosed patient population may identify factors related to the decision to use light therapy. Treatments that impact social support and self-efficacy may improve treatment response to light therapy in SAD.

Health behavior change in advance care planning: an agent-based model

BackgroundA practical and ethical challenge in advance care planning research is controlling and intervening on human behavior. Additionally, observing dynamic changes in advance care planning (ACP) behavior proves difficult, though tracking changes over time is important for intervention development. Agent-based modeling (ABM) allows researchers to integrate complex behavioral data about advance care planning behaviors and thought processes into a controlled environment that is more easily alterable and observable. Literature to date has not addressed how best to motivate individuals, increase facilitators and reduce barriers associated with ACP. We aimed to build an ABM that applies the Transtheoretical Model of behavior change to ACP as a health behavior and accurately reflects: 1) the rates at which individuals complete the process, 2) how individuals respond to barriers, facilitators, and behavioral variables, and 3) the interactions between these variables.MethodsWe developed a dynamic ABM of the ACP decision making process based on the stages of change posited by the Transtheoretical Model. We integrated barriers, facilitators, and other behavioral variables that agents encounter as they move through the process.ResultsWe successfully incorporated ACP barriers, facilitators, and other behavioral variables into our ABM, forming a plausible representation of ACP behavior and decision-making. The resulting distributions across the stages of change replicated those found in the literature, with approximately half of participants in the action-maintenance stage in both the model and the literature.ConclusionsOur ABM is a useful method for representing dynamic social and experiential influences on the ACP decision making process. This model suggests structural interventions, e.g. increasing access to ACP materials in primary care clinics, in addition to improved methods of data collection for behavioral studies, e.g. incorporating longitudinal data to capture behavioral dynamics.

Conflict Management Strategies in the ICU Differ Between Palliative Care Specialists and Intensivists.

Objectives:Conflict is common between physicians and surrogate decision makers around end-of-life care in ICU. Involving experts in conflict management improve outcomes, but little is known about what differences in conflict management styles may explain the benefit. We used simulation to examine potential differences in how palliative care specialists manage conflict with surrogates about end-of-life treatment decisions in ICUs compared with intensivists. Design:Subjects participated in a high-fidelity simulation of conflict with a surrogate in an ICU. In this simulation, a medical actor portrayed a surrogate decision maker during an ICU family meeting who refuses to follow an advance directive that clearly declines advanced life-sustaining therapies. We audiorecorded the simulation encounters and applied a coding framework to quantify conflict management behaviors, which was organized into two categories: task-focused communication and relationship building. We used negative binomial modeling to determine whether there were differences between palliative care specialists’ and intensivists’ use of task-focused communication and relationship building. Setting:Single academic medical center ICU. Subjects:Palliative care specialists and intensivists. Interventions:None. Measurements and Main Results:We enrolled 11 palliative care specialists and 25 intensivists. The palliative care specialists were all attending physicians. The intensivist group consisted of 11 attending physicians, 9 pulmonary and critical care fellows, and 5 internal medicine residents rotating in the ICU. We excluded five residents from the primary analysis in order to reduce confounding due to training level. Physicians’ mean age was 37 years with a mean of 8 years in practice. Palliative care specialists used 55% fewer task-focused communication statements (incidence rate ratio, 0.55; 95% CI, 0.36–0.83; p = 0.005) and 48% more relationship-building statements (incidence rate ratio, 1.48; 95% CI, 0.89–2.46; p = 0.13) compared with intensivists. Conclusions:We found that palliative care specialists engage in less task-focused communication when managing conflict with surrogates compared with intensivists. These differences may help explain the benefit of palliative care involvement in conflict and could be the focus of interventions to improve clinicians’ conflict resolution skills.

Costs at the End of Life: Perspectives for North Carolina

Many elders require supportive services, with many costs covered by Medicaid. Once terminal illness sets in, palliative care and hospice may help control cost while ensuring quality. This commentary reviews trends in cost at the end of life and describes selected strategies to improve patient-centered care in North Carolina.