Communicating with people living with dementia who are nonverbal: the creation of Adaptive Interaction

Loss of verbal language production makes people with dementia appear unreachable. We previously presented a case study applying nonverbal communication techniques with a lady with dementia who could no longer speak, which we termed Adaptive Interaction. The current small-n study examines the applicability of Adaptive Interaction as a general tool for uncovering the communication repertoires of non-verbal individuals living with dementia. Communicative responses of 30 interaction sessions were coded and analysed in two conditions: Standard (Baseline) and Adaptive Interaction (Intervention). All participants retained the ability to interact plus a unique communication repertoire comprising a variety of nonverbal components, spanning eye gaze, emotion expression, and movement. In comparison to Baseline sessions, Intervention sessions were characterised by more smiling, looking at ME and imitation behaviour from the people with dementia. These findings allude to the potential of Adaptive Interaction as the basis for interacting with people living with dementia who can no longer speak

The Quality of Physician Orders for Life-Sustaining Treatment Decisions: A Pilot Study

BackgroundPhysician Orders for Life-Sustaining Treatment (POLST) forms are used to document patient treatment preferences as medical orders. Prior research demonstrates that use of POLST alters medical treatments in a way that is consistent with the POLST orders. However, there are minimal data about the quality of POLST decisions, including whether they reflect the current preferences of well-informed patients.ObjectiveEvaluate the quality of POLST decisions.DesignChart abstraction; interviews.SubjectsNursing home residents and healthcare agents of incapacitated nursing home residents (n = 28).MeasurementsCharacteristics of the POLST conversation were assessed. Brief vignettes were used to assess knowledge about how POLST orders guide medical treatment. Current treatment preferences were elicited and compared with the patient's POLST orders to assess discordance.ResultsA majority (59%) of participants recognized the POLST form. Participants were generally accurate in their knowledge of how POLST orders guide treatment concerning cardiopulmonary resuscitation (CPR) (68%), antibiotics (74%), and artificial nutrition (79%), but less so for medical interventions (50%). Current treatment preferences were initially discordant with one or more POLST orders for 64% (18/28) of participants, but half of these discordances were resolved with further discussion (e.g., participant agreed with the existing order). Discordance by treatment decision was as follows: CPR (7%), level of medical intervention (18%), antibiotics (21%), and artificial nutrition (11%).ConclusionsDiscordance between current preferences and POLST orders is complex. Interventions are needed to support high-quality POLST decisions that are informed and concordant with current preferences

An Ethical Façade? Medical Students' Miscomprehensions of Substituted Judgment

Background: We studied how well first-year medical students understand and apply the concept of substituted judgment, following a course on clinical ethics. Method: Students submitted essays on one of three ethically controversial scenarios presented in class. One scenario involved a patient who had lost decisional capacity. Through an iterative process of textual analysis, the essays were studied and coded for patterns in the ways students misunderstood or misapplied the principle of substituted judgment. Results: Students correctly articulated course principles regarding patient autonomy, substituted judgment, and nonimposition of physician values. However, students showed misunderstanding by giving doctors the responsibility of balancing the interests of the patient against the interests of the family, by stating doctors and surrogates should be guided primarily by a best-interest standard, and by suggesting that patient autonomy becomes the guiding principle only when patients can no longer express their wishes. Conclusion: Students did not appear to internalize or correctly apply the substituted judgment standard, even though they could describe it accurately. This suggests the substituted judgment standard may run counter to students ’ moral intuitions

The considerations, experiences and support needs of family members making treatment decisions for patients admitted with major stroke:a qualitative study

BACKGROUND: Treatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient's treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs.METHOD: Semi-structured interviews with family members (n = 24) of patients with major stroke, within 2 weeks of hospital admission. Data were analysed thematically.RESULTS: Families' approach to treatment decision-making lay on a spectrum according to the patient's state of health pre-stroke (i.e. patient's prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients' deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive.CONCLUSION: The knowledge that family members' treatment decision-making approaches lay on a spectrum depending on the patient's state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient's prognosis. This may enable doctors to provide information and support that is tailored towards family members' needs.</p

The Importance of Spirituality in African-Americans' End-of-Life Experience

A profound and moving spirituality provided emotional and psychological support for most terminally ill patients at Grady Memorial Hospital. The authors were able to trace the roots of these patients' spirituality to core beliefs described by African-American theologians. Truly bedrock beliefs often reflected in conversations with the patients at Grady included the providence of God and the divine plan for each person's life. Patients felt an intimate relationship to God, which they expressed through prayer. Importantly, almost all patients were willing to share their beliefs with the authors in long bedside interviews. This willingness to share indicates that physicians can learn about and validate such patients' spiritual sources of support