Family Wishes Research Articles

Preventing Emergency Department Visits: Success Of A Community Dementia Care Model

Abstract Background Advanced dementia care in the community is an extremely complex task. NICE guidelines 2021 suggested that a gap in care was evident bridging between clinic attendance and end of life care. Secondary to a required need- a new advanced dementia care model was created in 2021.This was co-developed by an ANP with a specialist interest in gerontology, an integrated care team for older persons (ICPOP) consultant and palliative care in the community. Joint governance remains to this day. My aim is to review unexpected emergency department (ED) attendances of patients accepted to this pathway. Methods Patient records were reviewed of all cases accepted for review and managed under this model of care, time frame Jan 2023- May-2024. All patients > 65. Outcomes of management interventions were assessed. Those found to have an ED attendance during their time engaging with this model of care had closer review of their notes to assess reason why. Results 81 patients. Of which 75% were female. Average age – 89. Of these 48% died at home and are 37% still alive. Of the 81 patients only 5 (6%) had ED attendances. Of these 5 patients - 3 had unexpected traumatic falls- 2 resulting in hip fracture and 1 in humeral fracture. 2 were admitted with worsening delirium. Conclusion The advanced dementia care model has proved very successful in preventing ED attendances prior to direct end of life care engagement. Of those who were admitted – fractures appropriately warrant admission and the remaining 2 cases, had families who were resistant to accepting overall aims of treatment. This interdisciplinary model of care saves bed days. Expanding this care model further to ensure appropriate management of complex dementia cases is maintained in the community would further reduce hospital overcrowding and grant many patient and family wishes.

Conspiracy of Silence in Head and Neck Cancer Diagnosis: A Scoping Review.

Cancer disclosure represents a complex healthcare dynamic. Physicians or caregivers may be prompted to withhold diagnosis information from patients. This study aims to comprehensively map and synthesize available evidence about diagnosis nondisclosure regarding head and neck cancer (HNC) patients. Following the Joanna Briggs Institute guidelines, a scoping review was conducted across major databases without period restriction, yielding 9238 publications. After screening and selection, a descriptive synthesis was conducted. Sixteen studies were included, primarily conducted in academic settings (75%) from Europe and Asia, with a total population of 662 patients predominantly diagnosed with brain, oral, pharyngeal, or laryngeal tumors. Remarkably, 22.51% of patients were unaware of their diagnosis. Although physicians were the main source of diagnostic information (35%), they reported to often use vague terms to convey malignancy. Additionally, 13.29% of patients were aware of their diagnosis from sources other than doctors or caregivers. Caregivers (55%) supported diagnosis concealment, and physicians tended to respect family wishes. A high diagnosis-to-death interval, education, and age significantly influenced diagnosis disclosure. HNC patients expressed a desire for personalized open communication. Multiple factors influenced the decision on diagnosis disclosure. Current evidence on this topic varies significantly, and there is limited research on the consequences of nondisclosure. These findings reflect the underestimation of the patients' outlook in the diagnosis process and highlight the need for further research, aiming to establish open communication and patient autonomy during the oncological journey.

The development and validation of a conceptual definition of avoidable transitions from long-term care to the emergency department: A mixed methods study.

Transitions to and from Emergency Departments (EDs) can be detrimental to long-term care (LTC) residents and burden the healthcare system. While reducing avoidable transfers is imperative, various terms are used interchangeably including inappropriate, preventable, or unnecessary transitions. Our study objectives were to develop a conceptual definition of avoidable LTC-ED transitions and to verify the level of stakeholder agreement with this definition. The EXamining Aged Care Transitions study adopted an exploratory sequential mixed-method design. The study was conducted in 2015-2016 in 16 LTC facilities, 1 ED, and 1 Emergency Medical Service (EMS) in a major urban center in western Canada. Phase 1 included 80 participants, (healthcare aides, licensed practical nurses, registered nurses, LTC managers, family members of residents, and EMS staff). We conducted semistructured interviews (n = 25) and focus groups (n = 19). In Phase 2, 327 ED staff, EMS staff, LTC staff, and medical directors responded to a survey based on the qualitative findings. Avoidable transitions were attributed to limited resources in LTC, insufficient preventive care, and resident or family wishes. The definition generated was: A transition of an LTC resident to the ED is considered avoidable if: (a) Diagnostic testing, medical assessment, and treatment can be accessed in a timely manner by other means; (b) the reasons for a transfer are unclear and the transition would increase the disorientation, pain, or discomfort of a resident, outweighing a clear benefit of a transfer; and (c) the transition is against the wishes expressed by the resident over time, including through informal and undocumented conversations. There was a high level of agreement with the definition across the four participant groups. To effectively reduce LTC resident avoidable transitions, stakeholders must share a common definition. Our conceptual definition may significantly contribute to improved care for LTC residents.

Dual Advocates in Deceased Organ Donation: The Potential for Moral Distress in Organ Procurement Organization Staff.

AbstractOrgan procurement organization (OPO) staff play an essential role in the facilitation of organ donation as they guide family members and loved ones of dying patients through the donation process. Throughout the donation process, OPO staff must assume the role of a dual advocate, considering both the interests of the donor (which often include the wishes of the donor's family) and the interests of potential recipient(s). The benefits of this role are well established; however, minimal literature exists on the ways this role can cause moral distress in OPO staff, who frequently face scenarios in which adhering to the wishes of a donor family may compromise donation potential but failing to honor donor family requests may result in further emotional burden for the family. Given the frequency with which these ethically complex situations exist during donation, OPO staff are at heightened risk for experiencing moral distress and burnout, yet they are seldom acknowledged in the existing moral distress literature. As a result, it is unclear whether the current practices available to mitigate moral distress are beneficial for this population.

‘Difficulties when learning, easiness when fighting’: Why do families in Latvia choose (pre)schools with a language of instruction other than their L1?

Aims and objectives: Language debates in Latvia often focus on the role of Latvian as official and main societal language. Yet, Latvian society is highly multilingual, and families with home languages other than Latvian have to choose between different educational trajectories for their children. In this context, this paper discusses the results of two studies which addressed the question of why families with Russian as a home language choose (pre)schools with languages other than Russian as medium of instruction (MOI). The first study analyses family narratives which provide insight into attitudes and practices which lead to the decision to send children to Latvian-MOI institutions. The second study investigates language attitudes and practices by families in the international community of Riga German School. Methodology: The paper discusses data gathered during two studies: for the first, semi-structed interviews were conducted with Russian-speaking families who choose Latvian-medium schools for their children. For the second study, a survey was carried out in the community of an international school in Riga, sided by ethnographic observations and interviews with teachers and the school leadership. Data and analysis: Interviews and ethnographic observations were subjected to a discourse analysis with a focus on critical events and structures of life trajectory narratives. Survey data were processed following simple statistical analysis and qualitative content analysis. Findings/conclusions: Our data reveal that families highly embrace multilingualism and see the development of individual plurilingualism as important for integration into Latvian society as well as for educational and professional opportunities in the multilingual societies of Latvia and Europe. At the same time, multilingualism and multiculturalism, including Russian, are seen as a value in itself. In addition, our studies reflect the bidirectionality of family language policies in interplay with practices ineducational institutions: family decisions influence children’s language acquisition at school, but the school also has an impact on the families’ language practices at home. In sum, we argue that educational policies should therefore pay justice to the wishes of families in Latvia to incorporate different language aspects into individual educational trajectories. Originality: Language policy is a frequent topic of investigation in the Baltic states. However, there has been a lack in research on family language policy and school choices. In this vein, our paper adds to the understanding of educational choices and language policy processes among Russian-speaking families and the international community in Latvia.

Human Dignity: Exploring the Implications of the Dying Patient Act in Home-Hospice Care

Abstract Background Human dignity is a vital value in democratic countries, forming the foundation for essential values such as autonomy, informed consent and appropriate clinician-patient relationships. The Israeli Dying Patient Act of 2005 aims to balance the sanctity of life and patient autonomy by standardizing medical care for dying patients. The law mandates that clinicians respect dying patients’ wishes and not artificially prolong their lives, providing palliative care administered by a multi-professional team. This study explores the implications for the human dignity of dying patients in home hospice care in Israel. Research Methodology The study employs a qualitative approach, utilizing 17 semi-structured interviews with multi-professional team members working within a home hospice framework. The collected data was analyzed using a narrative analysis approach. Results The findings reveal a nuanced understanding of the challenges of implementing the human dignity value in the home hospice, based on the Dying Patient Act. The challenges include managing a care framework that is also the patient's home, dealing with the tension between patients’ wishes and those of their families, and managing patients’ changing wishes, such as when they initially wish to die at home but later ask to be taken to the hospital. Conclusions Clinicians should be trained in end-of-life communication to respect patients’ wishes at the home hospice under the spirit of the Dying Patient Act. Patients and families should be partners in addressing these challenges. Human dignity is essential in providing quality care. This study offers insights for policymakers and clinicians to improve end-of-life care in the home hospice setting. Key messages • In the home hospice, human dignity plays a crucial role in delivering quality and ethical care, especially when dealing with the balance between the Inconsistent wishes of patients and families. • Clinicians should be trained in end-of-life communication to respect patients’ wishes, and patients and families should be partners in addressing the challenges to provide quality care.

Visiting Policies and Parental Presence During PICU Admission: A Survey in French Units.

To describe the policies about parent visiting and involvement in care during admission to French PICUs. A structured questionnaire was emailed to the chief of each of 35 French PICUs. Data about visiting policies, involvement in care, evolution of policies, and general characteristics were collected from April 2021 to May 2021. A descriptive analysis was conducted. Thirty-five PICUs in France. None. None. Twenty-nine of 35 (83%) PICUs replied. Twenty-four-hour access for parents was reported for all PICUs responding. Other allowed visitors were grandparents (21/29, 72%) and siblings (19/29, 66%) with professional support. Simultaneous visits were restricted to two visitors in 83% (24/29) of PICUs. Family presence was always permitted during medical rounds for 20 of 29 (69%) PICUs. Most of the units rarely or never allowed parental presence during the most invasive procedures, such as central venous catheter placement (18/29, 62%) and intubation (22/29, 76%). Unrestricted access to the PICU, for both parents, was available in all responding French units. There were, however, restrictions on the number of visitors and the presence of other family members at the bedside. Moreover, permission for parental presence during care procedures was heterogenous, and mainly restricted. National guidelines and educational programs are needed to support family wishes and promote acceptance by healthcare providers in French PICUs.

The presence of moral distress among critical care nurses in Saudi Arabia

Background: Moral distress (MD) was first defined as a situation in which one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action. This can be even more challenging within the critical care context as critical the care context imposes physical, emotional, and cognitive stressors on critical care nurses. Methodology: A descriptive quantitative approach was followed, and the critical care units of two tertiary hospitals in two provinces in Saudi Arabia were included in the study, yielding a cluster sample size of 361 critical care nurses. Data were collected using the MD Scale-Revised, for which reliability and validity have been established. Results: The mean total MD experienced by respondents was 77.15 ± 58.32, representing a low level of MD. The statement that nurses indicated as causing the most distress was “follow the family's wishes to continue life support even though I believe it is not in the best interest of the patient” with 5.98 ± 5.04. Furthermore, 17.5% (n = 63) of nurses had considered leaving their positions because of MD. MD was the highest in the Emergency department with 102.12 ± 70.59; as experience increased by 1 year, the MD score increased by 11.56. Conclusion: When dealing with issues related to futile care, critical care nurses experience MD. Therefore, future research is required to develop appropriate interventions with which to address critical care-related MD.

Years of life lost: A call to achieve equitable end-of-life care among children.

Significant disparities continue to exist in access to inpatient pediatric hospice care among children at the end-of-life. Increasingly more children at this stage are dying in the hospital or at home on hospice which is not always an acceptable option to the children and their families. Two clinical case examples illustrate implementation of these options in practice. A missing link exists in healthcare systems across developed and developing countries in pediatric end-of-life care. Currently, the primary options involve selecting between hospital and home-based hospice care. Proposing to increase access to inpatient pediatric hospice services could potentially increase acceptability of this option to honor the child in line with the family's preferences, goals, wishes, and values. In addition, inpatient pediatric hospice could offset costs from preventable hospitalizations and overall high-cost healthcare utilization. Oftentimes, readmissions impact decision-making among caregivers that include changes in code status from Do Not Resuscitate/Do Not Intubate (DNR/DNI) to full curative care, thereby resulting in medicalization or overmedicalization of the child. It follows that reduced healthcare expenditures will increase cost efficiency across the healthcare system. Achieving health equity in palliative care among adult and pediatric patients at the end-of-life is a longstanding goal of the World Health Organization (WHO) and the United Nations International Children's Emergency Fund (UNICEF). Proposing to mitigate disparities in palliative care among children through inpatient hospice as another viable option for their families could contribute to the larger overarching goal of achieving health equity in end-of-life care across the world.

Ethics Roundtable: Advance Directives, Autonomy, and Gastrostomy Placement.

CL is a 94-year-old male who is brought to the Emergency Department from an assisted living facility due to a new onset of weakness and altered mental status. He was in his usual state of moderately compensated health, requiring assistance for most activities of daily living due to medical frailty and a previous right brain CVA with residual mild left sided weakness. On the day of admission, the staff found him lethargic and disoriented. The family requested a surgical consult for percutaneous, endoscopic, gastrostomy (PEG) tube placement. A review of the patient's records showed that the patient had refused a PEG tube during his last two hospitalizations. During the last admission, the hospitalist documented that the patient repeatedly refused nutritional support stating "if it's my time, I've lived a full life. I'm ready to die and join my wife." There was no advance care plan ("living will"), but CL did sign a "Selection of Surrogate Decision-maker" form previously, assigning his nephew as primary surrogate. Under pressure from multiple family members, including the designated surrogate, the attending requested a surgical consultation. The surgical team determined that the patient did not have capacity and scheduled CL for PEG tube placement. The care team had concerns regarding the conflict between the patient's previously (and consistently) stated desires and the family's wishes; an ethics consult was requested.

How Do Psychiatrists in Japan Choose Involuntary Admission, and What Do They Think of Supported Decision Making? A Thematic Analysis of Peer to Peer Interviews.

To include people with disabilities as equal citizens, CRPD (Convention on the Rights of Persons with Disabilities) promotes direct or supported decision-making by people with disabilities. However, involuntary psychiatry admission is considered in many countries to be necessary for people with psychosocial disabilities. To overcome the tension and implement CRPD, it is essential to understand the experiences and concerns of service users, family members, and medical professionals in each country. To understand the process and the factors that make psychiatrists decide involuntary psychiatric admission in Japan, and explore their attitudes toward direct or supported decision-making by people with psychosocial disabilities. Psychiatrists who had authorized involuntary admission and who were in charge of the service users were recruited at hospitals in Japan. The interviews were individual, peer to peer, and semi-structured. The interviews were audio-recorded, transcribed verbatim, and the analysis followed reflexive thematic analysis using NVIVO 12. Six psychiatrists (five designated psychiatrists and one psychiatric resident) participated in the study at two hospitals in urban Japan. The study found that the psychiatrists assessed symptoms, behaviors, and perceptions of the service users together with supports and wishes of their families. The psychiatrists decided on involuntary admission when they saw self-harm or violence, weak insights and judgment abilities, family's wishes, or when they wanted to avoid the service users leaving the hospital with incomplete treatment. The psychiatrists felt that the service users would not understand any explanations, which made their communications minimal. The psychiatrists thought it was hard to imagine a system other than the current involuntary admission mechanism. If it was to change, they felt the essential things were to avoid abuse, clarify who is responsible, make plans medically valid and feasible, and assess and plan through everyday life, not just in crisis. During a crisis, the psychiatrists were most careful about complying with the Mental Health Act and responded to the family's wish. The psychiatrists justified involuntary admission as they believed that people in a psychiatric crisis cannot decide or understand and need protection. Related protocols, laws, and expectations from family members shapes the values and practices of psychiatrists in Japan. The paper concludes with several recommendations to regard people with psychosocial disabilities as equal citizens, and promoting the aim of reducing or ending involuntary admission.

Communicating bad news to patients and families in African oncology settings.

To assess clinicians' self-reported knowledge of current policies in African oncology settings, of their personal communication practices around sharing bad news with patients, and to identify barriers to the sharing of serious news in these settings. A cross-sectional study of cancer care providers in African oncology settings (N=125) was conducted. Factor analysis was used to assess cross-cultural adaptation and uptake of an evidence-based protocol for disclosing bad news to patients with cancer and of providers' perceived barriers to disclosing bad news to patients with cancer. Analysis of Various (ANOVA) was used to assess strength of association with each dimension of these two measurement models by various categorical variables. Providers from Nigeria, Kenya, Ghana, and Rwanda represented 85% of survey respondents. Two independent, psychometrically reliable, multi-dimensional measurement models were derived to assess providers' personal communication practices and providers' perceived barriers to disclosing a cancer diagnosis. Forty percent (40%) of respondent nurses but only 20% of respondent physicians had had formal communications skills training. Approximately 20%-25% of respondent physicians and nurses reported having a consistent plan or strategy for communicating bad news to their cancer patients. Results show that effective communication about cancer diagnosis and prognosis requires an appreciation and clinical skill set that blends an understanding of cancer-related internalized stigmas harbored by patient and family, dilemmas posed by treatment affordability, and the need to navigate family wishes about cancer-related diagnoses in the context of African oncology settings. Findings underscore the need for culturally grounded communications research and program design.

Mothers of children with down syndrome: A qualitative study of experiences of breastfeeding and breastfeeding support.

Children with down syndrome (DS) are breastfed to a lesser extent than infants in general, despite research showing that it is possible for these children to breastfeed successfully. The aim was to describe how mothers of children with DS experienced breastfeeding and breastfeeding support from healthcare professionals. A qualitative study with an inductive approach. Individual interviews were performed with seven mothers from southern Sweden. The interviews were analysed using qualitative content analysis. The mothers felt that the support varied, as some healthcare professionals were supportive, while others had preconceptions regarding breastfeeding and DS. They also experienced that the guidelines could be an obstacle in the encounter with healthcare professionals thereby affecting the possibility to establish breastfeeding. Information and support were important to the mothers, and when insufficient, they turned to the internet for help. Mothers felt that healthcare professionals were bound to ward routines and guidelines, which could be contrary to their own and the family's wishes. They were also sensitive to the attitudes of healthcare professionals, which can affect their own state of mind. Healthcare professionals' preconceptions regarding breastfeeding and DS have not changed, despite research showing that infants with DS can breastfeed successfully. Increased awareness of the possibility to breastfeed an infant with DS is needed to provide better support to mothers.

A Survey of Clinicians Regarding Goals of Care for Patients with Severe Comorbid Illnesses Hospitalized for an Acute Deterioration.

BackgroundPatients with terminal illnesses hospitalized with acute deteriorations often suffer from unnecessary/inappropriate therapies at the end of their lives. Appropriate advance care planning (ACP) practices aligned to patients’ goals of care may mitigate this.Materials and methodsTo explore the rationale for clinical decision-making in hospitalized patients with terminal illnesses and formulate a practice pathway to streamline care. Between May and December 2018, a questionnaire survey with three case vignettes derived from intensive care unit (ICU) patients was emailed to ICU, respiratory and renal doctors, and nurses in two Sydney hospitals. Respondents chose various management options ranging from all active therapies to palliation. The primary outcome was the proportion of responses for each management option. With these and a thematic analysis of responses to identify barriers to ACP practice, a practice pathway was formulated.ResultsOf the 310 invited clinicians, 178 responded (57.4%). About 89.2% of respondents reported caring for dying patients frequently. Sixty percent saw patients suffering from prolonged therapies. Most respondents deemed patients in the case vignettes to be terminally ill, warranting ACP discussions. However, many still wanted to treat the acute deterioration with active ICU-level interventions. Most respondents reported being comfortable in having ACP discussions.ConclusionThe survey showed discordance between the stated opinions and the choice of management options for terminally ill patients with acute deteriorations; possibly due to the lack of a considered approach in choosing management options that align with medical consensus and the patient's/family's wishes, a practice pathway is suggested to improve management.How to cite this articleSarangi RK, Rajamani A, Lakshmanan R, Srinivasan S, Arvind H. A Survey of Clinicians Regarding Goals of Care for Patients with Severe Comorbid Illnesses Hospitalized for an Acute Deterioration. Indian J Crit Care Med 2022;26(4):457–463.

Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit

Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life. To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances. This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021. Staff demographic characteristics, intensity of end-of-life care (mechanical support, open chest, or cardiopulmonary resuscitation [CPR]), mode of death (discontinuation of life-sustaining therapy, treatment limitation, comfort care, CPR, and brain death), and palliative care involvement. PICU-QODD instrument standardized score (maximum, 100, with higher scores indicating higher quality); global rating of quality of the moment of death and 7 days prior (Likert 11-point scale, with 0 indicating terrible and 10, ideal) and mode-of-death alignment with family wishes. Of 60 patient deaths (31 [52%] female; median [IQR] age, 4.9 months [10 days to 7.5 years]), 33 (55%) received intense care. Of 713 surveys (72% response rate), 246 (35%) were from nurses, 208 (29%) from medical practitioners, and 259 (36%) from allied health professionals. Clinical experience varied (298 [42%] ≤5 years). Median (IQR) PICU-QODD score was 93 (84-97); and quality of the moment of death and 7 days prior scores were 9 (7-10) and 5 (2-7), respectively. Cronbach α ranged from 0.87 (medical staff) to 0.92 (allied health), and PICU-QODD scores significantly correlated with global rating and alignment questions. Mean (SD) PICU-QODD scores were more than 3 points lower for nursing and allied health compared with medical practitioners (nursing staff: 88.3 [10.6]; allied health: 88.9 [9.6]; medical practitioner: 91.9 [7.8]; P < .001) and for less experienced staff (eg, <2 y: 87.7 [8.9]; >15 y: 91, P = .002). Mean PICU-QODD scores were lower for patients with comorbidities, surgical admissions, death following treatment limitation, or death misaligned with family wishes. No difference was observed with palliative care involvement. High-intensity care, compared with low-intensity care, was associated with lower median (IQR) rating of the quality of the 7 days prior to death (4 [2-6] vs 6 [4-8]; P = .001) and of the moment of death (8 [4-10] vs 9 [8-10]; P =.001). In this cross-sectional survey study of CICU staff, the PICU-QODD showed promise as a reliable and valid clinician measure of quality of dying and death in the CICU. Overall QODD was positively perceived, with lower rated quality of 7 days prior to death and variation by staff and patient characteristics. Our data could guide strategies to meaningfully improve CICU staff well-being and end-of-life experiences for patients and families.

ICU Clinicians’ Experiences of Terminal Weaning and Extubation

ContextAside from spontaneous death, a majority of ICU deaths occur after a decision to either withhold or withdraw life-sustaining measures, including withdrawal of ventilatory support. While terminal weaning or terminal extubation are both used, the lack of evidence on the superiority of one method over the other can create challenges for ICU clinicians. There is a need to explore clinicians’ experiences related to terminal weaning/extubation to understand their decision-making processes as well as the context and mechanisms that guide this process. ObjectivesThis study aimed to explore ICU clinicians'experiences of Terminal Weaning of Mechanical Ventilation (TWMV) in order to better understand the process, and clinicians’ feelings about the process. MethodsThis study used an exploratory descriptive qualitative design. Data were collected via semi-structured, face-to-face interviews with 20 ICU clinicians. An inductive, data driven thematic analysis approach was used for data analysis. ResultsAnalysis of the data resulted in four themes: Fine-tuning the Process of TWMV; Focusing on the Family; Ensuring Patient-Centered Care; and Impact on Health care Clinicians and Support Needs. ConclusionThe identified themes provide insight into the complexity of the withdrawal of mechanical ventilation within the context of end-of-life care in the ICU. The themes highlight the need for clear communication of a TWMV plan between clinicians to avoid conflict during the process, ensuring medication is in place for potential distressing symptoms, incorporating patient and family wishes in planning, supporting the family during the process, and training and support for clinicians.

Prognostic disclosure in cancer care: a systematic literature review.

Background:Collusion in cancer care is the diplomatic concealment of information between a triad of the health care professional (HCP), patient, and caregiver. Free and expressive communication is determined by multiple factors, which establishes a healthy balance between ‘patient-centric’ and ‘family-centric’ decision making. The lack of a universal approach to prognostic disclosure techniques emphasizes the need for a systematic review of contemporary practice.Methods:A systematic review of the literature was conducted till June 2020 using themes based on cancer, communication, prognostic disclosure, and collusion by using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.Results:Fifty-three studies involving 10,569 subjects were studied for their utility on prognostic disclosure using different communication methods and interfaces. Twenty-three studies used a face-to-face interview with subjects while in-person telephonic interviews were conducted in two studies, 16 studies implicated semi-structured questionnaires, and 6 studies mentioned the development of a new technique/tool for disclosure. The duration of a session for prognosis-disclosure ranged from 22 min to 1 h. The involvement of palliative care specialists and mental health professionals was limited during the disclosure of the prognosis.Conclusion:The findings of the review indicate that patients in cancer care are aware of their diagnosis and to a certain extent of prognosis despite nondisclosure by their family members and treating teams. This review emphasizes the assessment of ‘disclosure wishes’ among patients and caregivers in separate interviews rather than simply relying on one specific method of interviewing. The nonconfrontational approach and training among HCPs are of utmost importance to build therapeutic resilience among the treating team involved in cancer care. Since many factors such as family wishes, cultural dissonance, medical model, and patient perception could become barriers to prognostic disclosure, there is a need to develop a universal approach to prognostic disclosure and handling associated collusion.

Rectal Bleeding and Cow’s Milk Protein-induced Allergic Proctocolitis: A Prospective Study

To assess time to resolution of food protein–induced allergic proctocolitis (FPIAP).In this study, researchers evaluated 76 infants aged <4 months with rectal bleeding (RB) referred to the pediatric gastrointestinal department at Trousseau Hospital in Paris, France, between May 2014 and December 2017. Only infants whose RB responded to a cow’s milk elimination diet were included in the study.This was a prospective cohort of infants with concern for cow’s milk protein (CMP) allergy who had resolution of RB with CMP elimination. Exclusion criteria included RB because of another etiology and exclusively breastfed infants. A total of 2 to 8 weeks after resolution of RB, CMP oral food challenge (OFC) was completed. If FPIAP was confirmed, OFC was repeated every 2 months after the age of 4 months to assess the time to tolerance of CMP. Ongoing FPIAP CMP was defined as RB, behavioral change, diarrhea, and vomiting. Tolerance was defined as CMP daily without symptoms.Only 31% of the cohort failed OFC at initial diagnostic challenge, meaning that over two-thirds of infants who initially responded to CMP exclusion did not have return of symptoms on rechallenge just weeks later. Of the patients confirmed to have FPIAP CMP, the median age of tolerance was determined to be 6.8 months, with >75% of the cohort tolerant by 10 months. Infants with a first-degree family history of atopic disease developed tolerance later (8.9 months versus 5.1 months).In this work, it was confirmed that the majority of RB in infants is likely not related to FPIAP CMP. This study also revealed that the time to resolution might be earlier than previously thought.Although there are no solid guidelines on introduction of CMP in presumed FPIAP CMP, the majority of patients exclude CMP until approximately 1 year. In this study, it was found that only one-third of RB before 4 months was due to FPIAP. Of those with FPIAP, CMP could be challenged earlier and at more frequent intervals depending on family wishes. A major limitation of this study is that exclusively breastfed infants were excluded and the lack of information on maternal diet in those who were nursing.

Australian Perspectives on Opt-In and Opt-Out Consent Systems for Deceased Organ Donation.

Introduction: As many countries change to opt-out systems to address organ shortages, calls for similar reform in Australia persist. Community perspectives on consent systems for donation remain under-researched, therefore Australian perspectives on consent systems and their effectiveness in increasing donation rates were explored. Design: In this descriptive cross-sectional study, participants completed a survey presenting opt-in, soft opt-out, and hard opt-out systems, with corresponding descriptions. Participants chose the system they perceived as most effective and described their reasoning. Results: Participants (N = 509) designated soft opt-out as the most effective system (52.3%; hard opt-out 33.7%; opt-in 13.7%). Those who identified with an ethnic/cultural group or were not registered had greater odds of choosing opt-out. Six themes identified in thematic analysis reflected their reasoning: (1) who decides (individual, shared decision with family); (2) right to choose; (3) acceptability (ethics, fairness); and utility in overcoming barriers for (4) individuals (apathy, awareness, ease of donating, fear/avoidance of death); (5) family (easier family experience, family veto); (6) society (normalizing donation, donation as default, expanding donor pool). Choice and overcoming individual barriers were more frequently endorsed themes for opt-in and opt-out, respectively. Discussion: Results suggested the following insights regarding system effectiveness: uphold/prioritize individual's recorded donation decision above family wishes; involve family in decision making if no donation preference is recorded; retain a register enabling opt-in and opt-out for unequivocal decisions and promoting individual control; and maximize ease of registering. Future research should establish whether systems considered effective are also acceptable to the community to address organ shortages.

What prevention potential does the general practitioner setting offer for family caregivers?-findings from aqualitative interview study

The support of people in need of care and assistance is often provided by caring relatives. General practitioners can play an important role in supporting this group, if they adapt to the problems and wishes of family caregivers.The aim of the exploratory study is to contrast care needs of family caregivers regarding the GP support with actually experienced care and, thereby, work out approaches for strengthening the GP's role.Atotal of 37family caregivers were recruited via 13internet forums focused on caregiving. Telephone interviews were conducted between September 2020 and March 2021.The majority of those interviewed consider the GP to be an important support body with ahigh level of competence and trust. The interviewees praise the GP's knowledge of the personal care situation, the responsiveness to awide variety of problems and the focus on those in need of care. However, communication about the caring activity is often delayed significantly (late identification and addressing of family caregivers). GPs do not always address the needs of relatives to the same extent as they do to those in need of care. Only some of the doctors refer caregivers to offers of help and support.GPs can play acentral role in supporting family caregivers. An crucial prerequisite for this is that family caregivers are recognized and involved at an early stage. In addition, it is important that GPs take into account the needs, desires and stresses of both caregivers and those being cared for. Consistent references to offers of help make it easier for family caregivers to organize care and to receive (psychosocial) support.