Mid-Atlantic primary care providers' perception of barriers and facilitators to end-of-life conversation.

Background: Among the chronically ill, end-of-life conversations are often delayed until emergently necessary and the quality of those conversations and subsequent decision-making become compromised by critical illness, uncertainty, and anxiety. Many patients receive treatment that they would have declined if they had a better understanding of benefits and risks. Primary care providers are ideal people to facilitate end-of-life conversations, but these conversations rarely occur in the out-patient setting. Objective: To investigate the self-reported experiences of physicians and advanced practice nurses with conversational barriers and facilitators while leading end-of-life discussions in the primary care setting. Design: A qualitative descriptive study. Methods: Six physicians and eight advanced practice nurses participated in singular semi-structured interviews. Results were analyzed using a qualitative descriptive design and content analysis approach to coding. Results: Reported barriers in descending order included resistance from patients and families, insufficient time, and insufficient understanding of prognosis and associated expectations. Reported facilitators in descending order included established trusting relationship with provider, physical and/or cognitive decline and poor prognosis; and discussion standardization per Medicare guidelines. Conclusion: Recommendations for improving the end-of-life conversational process in the primary care setting include further research regarding end-of-life conversational facilitators within families, the improvement of patient/family education about hospice/palliative care resources and examining the feasibility of longer appointment allotment.1.

Characterizing end-of-life communication in families.

Background: The chronic disease course can be uncertain, contributing to delayed end-of-life discussion within families resulting in missed opportunity to articulate wishes, increased decisional uncertainty, and delayed hospice care. Consistent with the Family Communication Patterns Theory (FCPT), family communication patterns may affect the quality and timing of end-of-life discussion, hospice utilization, and the experience of 'a good death.' Objective: To assess how families' conversation and conformity orientation (spontaneity of conversation and hierarchical rigidity) form four family communication patterns (consensual, pluralistic, protective, and laissez-faire) and may be associated with the number and timing of end-of-life discussions. Design: A cross-sectional study. Methods: Family members of loved ones who died from chronic illnesses while in hospice (n = 56) completed online surveys including a modified Revised Family Communication Pattern instrument (RFCP) and the Chronic Illness Rating Scale (CIRS). Additional survey questions assessed the number and timing of end-of-life discussions and timing of hospice enrollment. IBM SPSS version 26 was used for descriptive analysis. Results: Most families (42.9%) were pluralistic, reporting communication styles with high conversation and low conformity orientation; (39.29%) were protective, reporting low conversation and high conformity orientation. Pluralistic families had more end-of-life conversations than did protective families. Conclusion: Study findings suggest that there may be a relationship between family communication pattern type and inclination toward end-of-life discussion. This first step supports future research regarding whether the FCPT can be used to predict which families may be at increased risk for ineffective or delayed end-of-life discussion. Additional variables to consider include the timing of hospice enrollment and the quality of the dying experience. Clinicians may ultimately use findings to facilitate earlier identification of and intervention for families who are at risk for poor end-of-life communication and outcomes.

Analyzing the Effects of Family Presence and Visitation Restrictions During the COVID-19 Pandemic Among Nurse Leaders and Non-Nurse Leaders.

AIM: This analysis seeks to identify the effect of family presence and visitation during COVID-19 pandemic among nurses and nurse leaders. BACKGROUND: Visitation restrictions were widespread during the initial months of the COVID-19 pandemic and were a potential source of distress for nurses. Few studies have examined sources of distress, such as visitation restrictions, among nurse leaders and non-nurse leaders. METHODS: Secondary analysis was performed using a national survey of nurses conducted by the American Nurses Foundation. RESULTS: More nurse leaders than nonleaders reported that nurses were involved in policy decisions/discussions and that visitation restrictions created additional burdens. There was similar level of agreement among nurse leaders and nonleaders that restrictions were not in the best interest of the patients. Many nurses reported the restrictions impacted their own well-being. CONCLUSION: Visitation restrictions were a likely source of distress. Improvements to communication, planning, and transparency should be considered in preparation for future emergencies that may require visitation restrictions.

Symptom progression in advanced Parkinson's disease: Dyadic perspectives.

This qualitative descriptive study investigated the self-reported symptoms of people with advanced Parkinson's disease. Fifteen dyads (person with Parkinson's and family caregiver) participated in two semi-structured interviews over a six-month time period; content analysis was used to explore the progression and new onset of symptoms. Reported symptoms in descending order included gait deterioration, falls, speech impairment, cognitive decline, functional decline, gastrointestinal and genitourinary changes, and swallowing impairment. The presence of multiple, compounding symptoms present challenges for maintaining safety in the home, highlighting the need for in-home services to assist with symptom management. Change in self-reported symptom experience was not significantly different after a six-month time frame. Symptom progression in advanced Parkinson's disease may take longer than six months to appreciatively manifest. Therefore, future research should explore the progression of advanced Parkinson's disease longitudinally over of period of time that exceeds six months.