How to Accommodate the Emotional Dimensions of Advance Care Planning Using Motivational Interviewing and Conditional Medical Orders.

Palliative care discussions offer a unique opportunity for helping patients choose end-of-life (EOL) treatments. These are among the most difficult decisions in later life, and protecting patients' ability to make these choices is one of healthcare's strongest ethical mandates. Yet, traditional approaches to advance care planning (ACP) have only been moderately successful in helping patients make decisions that lead to treatments concordant with their values. In particular, neglect of attention to the emotions that occur during consideration of the end of one's life contributes to patients' difficulty with engaging in the process and following through on decisions. To improve ACP outcomes, providers can address the patient's emotional experiences, and can use motivational interviewing as a way attend to elicit them and incorporate them into care planning. Applying personalizing emotion-attuned protocols like Conditional Medical Orders (CMO) also promotes this end.

Patient life aspirations in the context of Duchenne Muscular Dystrophy: a mixed-methods case-control study.

BACKGROUND: Aspirations refer to wishes, ways of defining quality of life (QOL), and life goals. Living with chronic illness likely impacts a person's life aspirations. Duchenne Muscular Dystrophy (DMD) is an inherited disorder characterized by the inevitable and progressive loss of ambulation and independence. The present cross-sectional case-control study investigated how aspirations differed between people with DMD and a stratified comparison group of nationally representative children/adults. METHODS: A web-based survey was administered October through December 2020. Recruitment was stratified by age group: 8-12, 13-17, and > = 18, reflecting the DMD disability trajectory. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, how they would define "QOL"; and goals; answers to the prompts were then coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisal Profilev2. These data were analyzed using multivariate models adjusting for propensity scores (demographic differences), and testing for the effects of role (patient or comparison), age, and role-by-age interactions. RESULTS: The study sample of DMD (n = 285) and comparison (n = 292) participants provided open-text data: 577 wishes statements, 283 QOL-definition statements, and 149 goals statements. Inter-rater reliability (kappa = 0.77) reflected good agreement between different raters' codes. Results suggested that people with DMD have aspirations that differ from their peers in several important ways. Both open-text and closed-ended data in both unadjusted and adjusted analyses generally showed that people with DMD were more focused on intrinsic aspirations such as health, healthcare, and independence than their peers. Compared to non-DMD persons, DMD individuals were much less focused on financial or housing concerns, community contributions, or spiritual growth. With age, patients' aspirations focused less on extrinsic aspirations such as careers and work and increasingly emphasized emotion-oriented goals. Patients were markedly less likely to give a direct answer to the open-ended goals question. CONCLUSION: There were important differences in aspirations between people with DMD and their peers. These findings may be helpful for developing psychosocial interventions.

Siblings' life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study.

BACKGROUND: The inevitable and progressive loss of independence in Duchenne Muscular Dystrophy (DMD) patients may have an impact on their siblings' life aspirations. The present cross-sectional case-control study investigated how aspirations differed between brothers and sisters of people with DMD and a stratified comparison group of nationally representative children/adults. METHODS: A web-based survey was administered October through December 2020. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, goals, and how they define quality of life (QOL) and were coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisal Profilev2. These data were analyzed using multivariate models adjusting for propensity scores (demographic differences) and testing for the effects of role (sibling or comparison), age, and role-by-age interactions. RESULTS: The study sample of DMD sibling (n = 349) and comparison (n = 619) participants provided open-ended data on 968 wishes statements, 390 QOL-definition statements, and 328 goals statements. Inter-rater reliability (kappa = 0.77) reflected good agreement between raters. Results of both open-ended and closed-ended data, and of both unadjusted and adjusted analyses suggested that DMD siblings, with age, were more focused on DMD-related, family/community, intimacy, and work concerns than their peers. They were less focused on improving mood, independence, pragmatics, or subtle fine-tuning of problem-solving in life. In contrast, the comparison group was more focused on goals related to growth, purpose, and reflection. Some group differences were amplified amongst older siblings. CONCLUSION: This is the first study to evaluate DMD siblings' aspirations in comparison to their peers. While there were many similarities between groups, the differences in aspirations between DMD siblings and their peers encompassed not just DMD, family/community, and intimacy, but also more work concerns. Directions for future quantitative and qualitative research are discussed.

If it's information, it's not "bias": a scoping review and proposed nomenclature for future response-shift research.

BACKGROUND: The growth in response-shift methods has enabled a stronger empirical foundation to investigate response-shift phenomena in quality-of-life (QOL) research; but many of these methods utilize certain language in framing the research question(s) and interpreting results that treats response-shift effects as "bias," "noise," "nuisance," or otherwise warranting removal from the results rather than as information that matters. The present project will describe the various ways in which researchers have framed the questions for investigating response-shift issues and interpreted the findings, and will develop a nomenclature for such that highlights the important information about resilience reflected by response-shift findings. METHODS: A scoping review was done of the QOL and response-shift literature (n = 1100 articles) from 1963 to 2020. After culling only empirical response-shift articles, raters characterized how investigators framed and interpreted study research questions (n = 164 articles). RESULTS: Of 10 methods used, papers using four of them utilized terms like "bias" and aimed to remove response-shift effects to reveal "true change." Yet, the investigators' reflections on their own conclusions suggested that they do not truly believe that response shift is error to be removed. A structured nomenclature is proposed for discussing response-shift results in a range of research contexts and response-shift detection methods. CONCLUSIONS: It is time for a concerted and focused effort to change the nomenclature of those methods that demonstrated this misinterpretation. Only by framing and interpreting response shift as information, not bias, can we improve our understanding and methods to help to distill outcomes with and without response-shift effects.

Use of conditional medical orders to minimize moral, ethical, and legal risk in critical care.

Risk managers and ethicists monitor adherence to codes of conduct in the delivery of medical services and proactively participate with providers to create protocols that minimize the moral, ethical, and legal risks inherent in many commonly used medical protocols. "Code/no code" medical orders work well for patients at the extremes who always or never want to undergo a procedure, but they create troubling uncertainties for others by preventing them from expressly requesting procedures under some circumstances but not others. Obeying binary orders such as DNAR (Do Not Attempt Resuscitation) can allow deaths that a patient might want to delay or can expose patients to prolonged suffering they wish to avoid. These risks can be reduced by: (1) fully explaining the nature of proposed interventions and their possible beneficial and adverse effects in varying circumstances; and (2) replacing the traditional dichotomy with a continuum of options from always, through conditionally sometime, to never orders adapted to a range of situations and preferences. The Conditional Medical Orders (CMO) form summarizes patients' preferences regarding resuscitation, ventilation, and artificial hydration and nutrition (ANH) is an efficient way to increases the chance that patients will undergo only the treatments they want.

Conditional Permission to Not Resuscitate: A Middle Ground for Resuscitation.

Every decision to perform or withhold cardiopulmonary resuscitation (CPR) has ethical implications that are not always well understood. Value-based decisions with far-reaching consequences are made rapidly, based on incomplete or possibly inaccurate information. For some patients, skilled, timely CPR can restore spontaneous circulation, but for others, success may either be unobtainable or bring serious iatrogenic consequences. Because CPR is an aggressive process yielding mixed results, patients must be informed about the likelihood of its positive and adverse outcomes. In considering whether to accept or refuse it, patients should also be given a realistic set of alternatives. Current protocols limit patients' options by restricting them to a choice between accepting or refusing CPR. Adding a "middle" code, DNAR-X (Do Not Attempt Resuscitation-Except), significantly expands patients' right to control what happens to their bodies by allowing them to stipulate CPR in some circumstances but not in others.

Protocol for the Assessment of Patient Capacity to Make End-of-Life Treatment Decisions.

Patients' right to decide what happens to their bodies, especially around the end of life, is enshrined in legislation across the world, but questions often arise about whether a patient is capable of meaningfully participating in such decisions. Because of uncertainties about capacity, care providers and administrative agencies often must decide whether to honor, or even to elicit, patients' wishes. General decision-making capacity has been well studied, but few clear protocols exist for ascertaining capacity at the end of life. Without clear guidelines about how to assess capacity, medical staff may ignore assessment and operate from invalid assumptions. In the interests of protecting patients' agency, we propose a straightforward protocol for assessing capacity to make decisions about end-of-life interventions.

The evidence missing from evidence-based practice.

Comments on the report by the APA Presidential Task Force on Evidence-Based Practice entitled Evidence-based practice in psychology. Regrettably, the task force report was largely silent on three critical issues. As a consequence, it omitted much of the evidence necessary for a complete picture of evidence-based practice. First, the task force report did not operationalize "evidence." Second, the task force report did not address the crucial problem of iatrogenic treatments. Third, the task force report said little about the necessity for ongoing objective evaluation of clinical cases, which is critical to ethically responsible services. Current debate centers on how research findings should be factored into interventions, not on whether it is necessary to do so. Rather than waiting for the resolution of competing views on the matter, psychologists bear an ethical obligation to offer evidence-informed services. Three critical steps that were largely neglected by the task force report can go far toward helping psychologists honor that commitment: (a) providing a clearer operationalization of scientific evidence, (b) using current research to rule out the use of potentially harmful methods, and (c) using objective criteria to evaluate all of their cases on an ongoing basis. These steps, in turn, clarify the menu of options available to therapists, help protect clients from harm, and offer the advantage of allowing clinicians to contribute to the growing body of knowledge about what does and does not work in psychotherapy.

Behavioral Treatments.

The central nervous system is the source of all behaviors and emotions; it also mediates the individual's relationship with the environment. Consequently, when the central nervous system is disrupted by neurologic disease, there are frequently many concomitant emotional and behavioral disturbances, as well as conflicts with the environment and the people surrounding the patient. Patients are often unaware that these maladaptive interactions often determine the nature and quality of care that they receive from their caregivers. The aggressive or wandering brain-damaged patient often ends up in a secure facility, and the apathetic patient often becomes forgotten. Although psychopharmacologic agents can moderate some of the behavioral and emotional symptoms of brain damage, these medications have side effects such as sedation and falls, among others, and they often interfere with the metabolism of medications that patients are already taking. Behavior therapy is an excellent supplement to, if not alternative for, medications to control symptomatic behaviors associated with brain damage for the following reasons: 1) behavioral treatment is nonpharmacologic, and, therefore, there are no drug interactions or side effects in patients with neurologic illnesses; 2) behavioral treatments can be designed to treat specific symptoms, and, by mitigating them, improve the quality of life of the patient and the caregivers; 3) the success of behavioral treatments can usually be quantified as the target behaviors are pinpointed and measured before, during, and after the behavioral interventions; 4) behavioral treatments are usually cost effective, because they can be devised by psychologists, but administered by direct daily caregivers and family members; and 5) behavioral treatments administered by caregivers give the caregivers a sense of participation and control of the treatment. Reports of the effectiveness of behavioral treatments support their inclusion as an important complementary component in the care of individuals with neurologic disorders as well as the milieu of institutions that care for the brain damaged.