Prehospital Providers' Perspectives about Online Medical Direction in Emergency End-of-Life Decision-Making.

Background: End-of-life treatment decisions present special challenges for prehospital emergency providers. Paramedics regularly make value-laden choices that transcend technical judgment and professional skill, affecting the type of care, how and to whom it is provided. Changes in prehospital emergency care over the last decade have created new moral challenges for prehospital emergency providers; these changes have also accentuated the need for paramedics to make rapid and reasoned ethical judgments. Objective: The purpose of the study was to explore the decision-making process that occurs when prehospital emergency teams respond to an end-of-life call with a focus on how state authorized documents such as a Non-Hospital Do Not Resuscitate (NHDNR) or Medical/Physician's Orders for Life-Sustaining Treatment (MOLST/POLST) or lack thereof inform decision-making. This paper presents the specific circumstances that informed the need for intervention from Online Medical Direction (OLMD) framed in the perspectives and words of the prehospital providers seeking that assistance. Methods: This study involved in-depth in-person interviews with 50 providers to elicit participants' experiences in their own words using a semi-structured interview instrument. Interviews were audio recorded and transcribed with permission. Results: Five themes emerged that illuminated how and when OLMD was involved in emergency end-of-life decisions: Termination of Resuscitation (TOR); Family Revoked DNR; Missing Documents; No Documents and No CPR; and Unusual Situations. Participants illustrated how the decision to terminate efforts was best-supported when it was made by collaboration between the on-scene provider and OLMD. Participants described ethical dilemmas when families asked them to initiate CPR in the presence of DNR orders and cognitive dissonance when CPR has been initiated but a valid DNR/MOLST is subsequently located. Conclusions: The study findings demonstrate the invaluable contribution of OLMD for complex end-of-life care decisions by prehospital providers, especially when there are difficult legal, ethical, and logistical questions. OLMD provides far more than technical support.

Navigating the Transition from Advanced Illness to Bereavement: How Provider Communication Informs Family-related Roles and Needs.

Person-centered, family-oriented services are integral to palliative and end-of-life care. Effective communication with providers informs the quality of the dying experience for patients and how families fare in bereavement. This paper reports findings from a study exploring how communication and care in the later stages of an advanced illness influence family caregivers' well-being in bereavement. A concurrent triangulation design was used to analyze data collected during semi-structured interviews with 108 recently bereaved caregivers from a single hospice agency in Western New York. Findings from this study suggest that family caregivers assume the role of interpreter and advocate while engaged in both formal and informal communication with health care providers at the end of care-recipients' lives. Findings also suggest that families are more likely to feel emotionally prepared for loss and grief when health care providers are available to communicate in a concise, consistent, and compassionate manner. The results illuminate the important connection between communication during the transition from late-stage illness to end-of-life care and preparation for bereavement. The paper concludes with a discussion of how findings from this study align with recent concerted efforts to establish standards and competencies for social work education and practice in palliative care.

"I want to go home": How location at death influences caregiver well-being in bereavement.

OBJECTIVES: Goal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver-patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver-patient preferred and actual locations of death influenced well-being in bereavement. METHODS: Mixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process. RESULTS: Patient preference-actual location congruence occurred for 53%; caregiver preference-actual location congruence occurred for 74%; caregiver-patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver-patient location congruence, (2) caregiver-patient location incongruence, and (3) location informed bereavement. CONCLUSIONS: Congruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver-patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers' sense of coherence and well-being in bereavement.

Decision-Making in the Moments Before Death: Challenges in Prehospital Care.

BACKGROUND: The primary charge of Emergency Medical Services (EMS) is to save lives. However, EMS personnel are frequently called to scenes where prolonging life may not be the primary goal. When someone is nearing death, family members may feel compelled to call 9-1-1 because they are feeling uncertain about how to manage symptoms at the end of life. OBJECTIVE: We sought to explore prehospital providers' perspectives on how the awareness of dying and documentation of end-of-life wishes influence decision-making on emergency calls near the end of life. METHODS: The study design was exploratory, descriptive, and cross-sectional. Qualitative methods were chosen to explore participants' perspectives in their own words. In-depth in-person interviews were conducted with 43 EMS providers. Interviews were audio recorded and professionally transcribed. Interview transcripts were entered in Atlas.ti for data management and coding. The analysis was deductive and guided by a conceptual model of 4 contexts of end-of-life decision-making that is not setting-specific, but has been applied to prehospital care in this study. RESULTS: The findings illustrate the relationship between awareness of dying and documentation of wishes in EMS calls. The 4 decisional contexts are: (1) Awareness of Dying-Wishes Documented: Families were prepared but validation and/or support was needed in the moment; (2) Awareness of Dying-Wishes Undocumented: EMS must initiate treatment, medical control guidance was needed; (3) Unaware of Dying-Wishes Documented: Shock, expectation that EMS can stop the dying; and (4) Unaware of Dying-Wishes Undocumented: Families were unprepared, uncertain, frantic. Each context is illustrated by representative quotes from participants. Discordance and conflict was found in each decisional context. CONCLUSIONS: This study illustrates that EMS providers are acutely aware of the impact of their decisions and actions on families at the end of life. How emergency calls near the end of life are handled influences how people die, whether their preferences are honored, and the appropriate use of ambulance transport and ED care. The findings highlight how the intersection of awareness of dying and documentation of wishes influence prehospital decision-making in end-of-life emergencies and demonstrate the key role EMS providers have in this critical period.

Metasynthesis: Dying adults' transition process from cure-focused to comfort-focused care.

AIM: To describe and explain the process of transition from cure-focused to comfort-focused health care as perceived and reported by patients, family members, and healthcare providers. BACKGROUND: Moving into the last phase of life due to advanced illness constitutes a developmental transition with increased vulnerability for patients and family. DESIGN: Qualitative metasynthesis. DATA SOURCES: Medline, CINAHL, and PsycInfo databases searched from inception through March 2016. Primary research reports published from 1990 to 2015, using qualitative designs to report transition experiences of patients, family members, and/or healthcare providers were included. REVIEW METHODS: Key elements were extracted and organized into matrices. Findings from each report were analysed using qualitative coding. RESULTS: The sample was 56 unique reports from 50 primary studies. Patients and families emphasized the importance of receiving understandable information, emotional support, respect for personhood and control. The critical juncture of 'realizing terminality' preceded a transition to comfort-focused care. Subsequently, a shift in goals of care emphasizing comfort and quality of life could occur. Continued provision of information, effective support, respect and control promoted 'reframing perceptions' and capacity to embrace a changed identity. Reframing allowed patient and family to find meaning and value in this last phase of life and to embrace the opportunity to prepare for death, nurture relationships, and focus on quality of living. CONCLUSION: Understanding the developmental process that can be engaged by patients and families at the end of life provides a theoretical basis that can inform choice and timing of interventions to reduce suffering and enhance positive outcomes.

Preparing students to address the social determinants of health in integrated care settings.

BACKGROUND: Health professionals are increasingly being called to address the social determinants of health (SDOH) and, to do so effectively, often requires an integrated approach to care. As a result, accreditation standards across multiple professions have emphasised the importance of interprofessional education (IPE). APPROACH: This paper describes large-scale, community-engaged learning that is required annually of students from nursing, pharmacy, public health, and social work. Through a series of asynchronous and synchronous activities that are informed by the Interprofessional Education Collaborative core competencies, students are trained to be SDOH change makers who can readily adopt integrated care service delivery frameworks into their future practice. EVALUATION: Approximately 1000 students have participated in this event since the University launched its IPE curriculum in 2017. Student consistently report achievement of the course learning objectives, with 91% of students reporting that the learning activities enhanced their understanding of their professional roles/responsibilities in regards to addressing poverty and food insecurity. IMPLICATIONS: Two key lessons learned from these efforts are described, including the benefits of a trauma-informed pedagogical approach and special considerations for large-scale learning.

A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities.

Greater attention is being paid to issues surrounding end-of-life care for aging adults with developmental disabilities. The purpose of this qualitative study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses who received care in settings in the United States. Using a comparative case study design, data from three sources (records, staff, surrogates) were collected sequentially and triangulated via within and cross-case analyses. Although the setting and design limit the generalizability of these findings, the feasibility of delivering high quality care to adults with developmental disabilities as they age and experience terminal illnesses is supported. Insights are presented regarding how nurses can address barriers by adapting policies and practices to accommodate the distinct needs that arise as people with developmental disabilities age, become seriously ill, and reach life's end.

Beyond Advance Directives: Addressing Communication Gaps and Caregiving Challenges at Life's End.

CONTEXT: The premise of advance directives and care planning is to help people articulate and document their wishes so surrogate decision-makers and providers can honor them. However, beyond the completion of such a document, underlying challenges are often unaddressed OBJECTIVES: The overall purpose of the study was to investigate how communication, including but not limited to the completion of advance directives, and caregiving influenced family caregivers' experiences. Communication gaps and caregiving challenges that were unaddressed by advance directives are presented. METHODS: Non-dominant simultaneous mixed-methods (QUAL-QUAN) were used to explore how end-of-life events influenced family caregivers. In-depth interviews were conducted with 108 caregivers about 4 months following the death of a family member who was in hospice care. RESULTS: A majority (n = 90; 84.9%) had specific wishes about end-of-life treatment. Patients had a completed: Health Care Proxy-101 (93.3%); Living Will-43 (39.8%); Do Not Resuscitate orders (DNR)-82 (75.9%) and Medical Orders for Life Sustaining Treatment-40 (37%). A majority (n = 83; 76.9%) of caregivers said that they had "enough" or "just the right amount" of information to prepare for the patients' death. Five themes illustrated caregivers' experiences: Family Conflict; Patient/Family-Provider Conflict; Uncertainty, Caregiving Realities; Awareness-Avoidance of Dying. CONCLUSION: A majority of had an advance directive, yet caregivers expressed feeling unprepared for decision-making, caregiving and discussing it with the dying person. The advance directive and care planning process fell short of providing needed communication, knowledge and preparation; it can be an opportunity for teaching, learning, preparing and supporting families at life's end.

Managing Death in the Field: Prehospital End-of-Life Care.

CONTEXT: Historically, the focus of prehospital care has been life-saving treatment. In the absence of a nonhospital do-not-resuscitate (DNR) order, prehospital providers have been compelled to begin and continue resuscitation unless or until it was certain that the situation was futile; they have faced conflict when caregivers objected. OBJECTIVES: The purpose of the study was to explore prehospital providers' perspectives on how legally binding documents (nonhospital DNR order/medical orders for life-sustaining treatment) informed end-of-life decision making and care. METHODS: This exploratory study used mixed methods in a sequential nondominant two-stage convergent quantitative and qualitative design. Phase I involved the collection of survey data. Phase II involved in-person semistructured interviews. RESULTS: Surveys were completed by 239 participants, and 50 follow-up interviews were conducted. Survey data suggested that 73.7% felt confident when there was a DNR order and they did not initiate resuscitation, and 58.2% felt confident working through family disagreement when cardiopulmonary resuscitation was requested but there was a DNR; 66.1% felt confident explaining the dying process when death was imminent, and 55.7% felt comfortable telling a family that a patient was dying. Four themes emerged: changing standards of care; eliminating false hope; transitioning care from patient to family; and transferring care after death. CONCLUSION: Prehospital providers provide support and care when they tell families that someone has died. Being able to comfort and be present with acute grief on scene is an important and evolving role for prehospital providers who manage death in the field.

The Nexus Between the Documentation of End-of-Life Wishes and Awareness of Dying: A Model for Research, Education and Care.

The convergence of medical treatment that can extend life with written medical orders that make it possible to refuse such treatment brings the differential dynamics of contemporary end-of-life decision making into sharp focus. Communication between families and clinicians can be confusing, uncertain, and pressured when death is imminent. These situations create distress that ultimately influences the end-of-life experience for people who are dying and those who care for them. This article presents the analysis of the decisional dynamics that emerge from the intersection of the patient-family-provider awareness that death is near with the presence or absence of documentation of expressed wishes for end-of-life care. A heuristic analysis was conducted with data from three studies about urgent decision making at the end of life. Original study data included 395 surveys, in-depth interviews with 91 prehospital (paramedics and emergency medical technicians), and content analysis of 100 Medical Orders for Life Sustaining Treatment forms that led to the development of an overarching conceptual model of decision making. Four decisional contexts emerged from the intersection of awareness of dying and documentation of wishes: 1) Aware Documented, 2) Aware Undocumented, 3) Unaware Documented, and 4) Unaware Undocumented. This generalizable model, which is agnostic of setting, can help clinicians more astutely recognize the clinical situation when death is imminent, assess patients and caregivers, and intervene to help focus conversation and direct decision making. The model can also inform research, education, and care for people in some of the most vulnerable moments of life.

Mediating Systems of Care: Emergency Calls to Long-Term Care Facilities at Life's End.

BACKGROUND: Nursing home (NH) residents account for over 2.2 million emergency department visits yearly; the majority are cared for and transported by prehospital providers (emergency medical technicians and paramedics). OBJECTIVE: The purpose of this study was to investigate prehospital providers' perceptions of emergency calls at life's end. This article focuses on perceptions of end-of-life calls in long-term care (LTC). DESIGN: This pilot study employed a descriptive cross-sectional design. Concepts from the symbolic interaction theory guided the exploration of perceptions and interpretations of emergency calls in LTC facilities. SETTING/SUBJECTS: A purposeful sample of prehospital providers was developed from one agency in a small northeastern U.S. city. MEASUREMENTS: Semistructured interviews were conducted with 43 prehospital providers to explore their perceptions of factors that trigger emergency end-of-life calls in LTC facilities. Qualitative data analysis involved iterative coding in an inductive process that included open, systematic, focused, and axial coding. RESULTS: Interview themes illustrated the contributing factors as follows: care crises; dying-related turmoil; staffing ratios; and organizational protocols. Distress was crosscutting and present in all four themes. CONCLUSIONS: The findings illuminate how prehospital providers become mediators between NHs and emergency departments by managing tension, conflict, and challenges in patient care between these systems and suggest the importance of further exploration of interactions between LTC staff, prehospital providers, and emergency departments. Enhanced communication between LTC facilities and prehospital providers is important to address potentially inappropriate calls and transport requests and to identify means for collaboration in the care of sick frail residents.

From Nonissue to Healthcare Crisis: A Historical Review of Aging and Dying With an Intellectual and Developmental Disability.

Individuals with intellectual and developmental disabilities are living unprecedentedly longer lives primarily due to the long-term benefits of the deinstitutionalization movement and widespread improvements in health outcomes. However, the consequences of this protracted aging process are significant, complex, and often poor not only for the individuals and their caregivers but for the mainstream healthcare community. This article will explore, utilizing a constructionist perspective, how these challenges evolved from a nonissue to an impending crisis in less than 25 years. Additionally, present-day efforts by researchers, policymakers, and practitioners to address these challenges will be explored and recommendations will be made for future directions.