Building a Bridge for Batten Disease

Background. Neuronal Ceroid Lipofuscinosis, or Batten disease, is a neurodegenerative disorder that results in seizures, vision loss, vegetative state, and premature death. This project aims to understand the value of disease organizations in the management of Batten disease progression. Methods. Seven semi-structured interviews with caregivers of children with Batten disease were conducted at a national family conference. Also, five semi-structured telephone interviews with disease organizations were conducted, two of which were Batten disease specific. Results. Most caregiver participants reported difficulties in getting a diagnosis. All participants reported significant benefit from involvement in the Batten Disease Support and Research Association (BDSRA) and associated family conference. Some of the most challenging aspects of care centered around a lack of in-home aid, medical equipment, and the education system. The disease advocacy organizations included Rare KC, the National Organization for Rare Disorders (NORD), Global Genes, Noah’s Hope, and Taylor’s Tale. Disease organizations encourage rare disease families to thrive by providing the bridge that connects patients, physicians, and researchers. A central organization implements an avenue for individuals to share information and meet people in the rare disease community. Conclusions. The participants provided clear examples of the benefits families received from being involved in a rare disease organization.

Family Conference In Primary Care Practice

From the Epidemiology Triangle, we can see that a person’s health status is influenced by 3 factors: host, agent, and the environment. The environment plays the biggest role as the cause of health problems, one of which is the family environment. Family can become a supporting factor or inhibiting factor in the successful management of patient’s cases. Therefore, a primary care physician/family physician needs to conduct family meetings to discuss and agree on solutions with the patient’s family by paying attention to inhibiting and supporting factors and find common solutions for the benefit of the patient.

Smartphone-Enabled, Telehealth-Based Family Conferences with Implementation of Shared Decision Making Concepts and Humanistic Communication: A Mixed Method Study (Preprint)

BACKGROUND Smartphone-enabled, telehealth-based family conferences represents an attractive and safe alternative to deliver communication in the COVID-19 pandemic. However, some may fear that the therapeutic relationship might be filtered due to lack of direct human contact. Virtual physician –family interaction and participants’ experience warrant further investigation. OBJECTIVE The study aims to explore whether shared decision making (SDM) model combining VALUE (Value family statements, Acknowledge emotions, Listen, Understand the patient as a person, Elicit questions) and PLACE (Prepare with intention, Listen intently and completely, Agree on what matters most, Connect with the patient’s story, Explore emotional cues) framework can help physicians respond empathetically to emotion cues and foster human connectedness in virtual context. METHODS This is a mixed method study. Participants were recruited from inpatient and outpatient unit in a tertiary medical center in Taiwan from February to May 2020. Family conferences were held if patients or their family required an update of prognosis, a discussion about goal of care, or a potential discharge plan. Smartphone-enabled telehealth-based family conference was arranged if the patient and their family agreed to take part. Those who declined to conduct virtual conference or did not possess the technological skills to participate were excluded. The main outcome was patient and family reported communication satisfaction score with a 10-point Likert scale. Qualitative measures included data from physicians, patients, and family. Physicians’ empathetic statements were classified by VALUE approach. Participants’ emotional cues were categorized into verbal emotional distress, nonverbal emotional distress, and positive emotion. RESULTS Twenty-five telehealth family conferences were conducted. The patients’ mean age was 72.9 (SD 14.3) years; 19 (76%) were married, and the majority of them had Eastern Cooperative Oncology Group (ECOG) score of 3-4. Of the main participating family members, 11 (44%) were patients’ children, 7 (28%) were spouses, and 7 (28%) were other family members. The average length of the family conference was 31.9 ± 11.7 minutes. Expression of verbal emotional distress was noted in 20% of patients and 20% of family members, while nonverbal distress was observed in 24% and 28% respectively. The satisfaction score was 8.7 ± 1.5 toward overall communication and 9.0 ± 1.1 on meeting the family’s needs. CONCLUSIONS Adopting SDM concepts with VALUE and PLACE approaches helps physicians foster connectedness in smartphone-enabled telehealth-based family conferences. The model had high patient and family reported satisfaction scores. It could be adopted worldwide when using telehealth and had implications to governments for policy changing with reimbursement modification.

Professional and Ethical Standards in the Activity of a Mediator: Problems of Implementation and Control

The article presents the experience of the Kemerovo region in creating system for training mediators in the Kuzbass Centre for Psychological and Educational, Medical and Social Care. The authors reveal the genesis and the main conceptual, methodological and technological aspects of the development of a regional model to train mediators for the educational system of Kuzbass. In conceptual and methodological terms, training mediators is based on a restorative approach and a transdisciplinary paradigm of restorative justice. The system of training mediators includes: training the skills of restorative technologies within additional professional educational programs of refresher courses; monthly methodological seminars for mediators and curators of reconciliation services in the region, supervision and intervision sessions for restorative programs’ facilitator; training programs for young volunteer mediators of school reconciliation services. The authors highlight the main risk factors and conditions for the effective work of mediators in difficult school, family and criminal situations, and the possibility of taking risks into account when training mediators and curators of reconciliation services. For the effective training of a mediator – restorative programs’ facilitator, it is important to focus on mastering: the principles of a restorative approach and the procedure of restorative mediation, the position of a mediator, technologies for conducting restorative programs (restorative mediation, community circles, a family conference, a school conference, a school-parent council, preventive restorative programs), skills of restorative communication, legal framework of reconciliation services in Russia. Monitoring data on the activities of the reconciliation services in Kuzbass on the implementation of restorative programs show a good level of training of mediators

A Team-Based Early Action Protocol to Address Ethical Concerns in the Intensive Care Unit

Background Ethical conflicts complicate clinical practice and often compromise communication and teamwork among patients, families, and clinicians. As ethical conflicts escalate, patient and family distress and dissatisfaction with care increase and trust in clinicians erodes, reducing care quality and patient safety. Objective To investigate the effectiveness of a proactive, team-based ethics protocol used routinely to discuss ethics-related concerns, goals of care, and additional supports for patients and families. Methods In a pre-post intervention study in 6 intensive care units (ICUs) at 3 academic medical centers, the electronic medical records of 1649 patients representing 1712 ICU admissions were studied. Number and timing of family conferences, code discussions with the patient or surrogate, and ethics consultations; palliative care, social work, and chaplain referrals; and ICU length of stay were measured. Preintervention outcomes were compared with outcomes 3 and 6 months after the intervention via multivariate logistic regression controlled for patient variables. Results The odds of receiving a family conference and a chaplain visit were significantly higher after the intervention than at baseline. The number of palliative care consultations and code discussions increased slightly at 3 and 6 months. Social work consultations increased only at 6 months. Ethics consultations increased at both postintervention time points. Length of ICU stay did not change. Conclusions When health care teams were encouraged to communicate routinely about goals of care, more patients received needed support and communication barriers were reduced.

The Family Conference

The family conference chapter explores, in detail, one of the primary interventions performed by palliative care providers. A successful meeting can actually be viewed as time saving as it offers an opportunity for many issues to be reviewed and for multiple important decisions to be made in a relatively short period of time. By describing the conference in terms of a surgical procedure, during which we prepare, do, and close, this chapter offers specific guidance in a way most likely to resonate with a surgeon. It reviews the steps necessary to prepare for a family conference and describes how such steps may aid the family and the treatment team in managing uncertainty. It introduces the ask-tell-ask model of communication and discusses how this model can help to facilitate shared decision-making.