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1.
Prehosp Emerg Care ; 26(2): 223-232, 2022.
Article in English | MEDLINE | ID: mdl-33320725

ABSTRACT

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.


Subject(s)
Emergency Medical Services , Terminal Care , Allied Health Personnel , Death , Humans , Resuscitation Orders
2.
J Pain Symptom Manage ; 63(3): 415-422, 2022 03.
Article in English | MEDLINE | ID: mdl-34662723

ABSTRACT

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.


Subject(s)
Advance Care Planning , Terminal Care , Advance Directives , Communication , Death , Decision Making , Humans , Living Wills , Resuscitation Orders
3.
J Soc Work End Life Palliat Care ; 16(2): 175-198, 2020.
Article in English | MEDLINE | ID: mdl-32511072

ABSTRACT

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.


Subject(s)
Bereavement , Caregivers/psychology , Communication , Professional-Family Relations , Terminal Care/psychology , Adaptation, Psychological , Adult , Aged , Aged, 80 and over , Female , Grief , Humans , Interviews as Topic , Longitudinal Studies , Male , Middle Aged , Palliative Care/psychology , Socioeconomic Factors
4.
J Pain Symptom Manage ; 60(4): 709-716.e2, 2020 10.
Article in English | MEDLINE | ID: mdl-32437943

ABSTRACT

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.


Subject(s)
Cardiopulmonary Resuscitation , Emergency Medical Services , Terminal Care , Decision Making , Humans , Resuscitation Orders
5.
Palliat Support Care ; 18(6): 691-698, 2020 12.
Article in English | MEDLINE | ID: mdl-32172719

ABSTRACT

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.


Subject(s)
Bereavement , Caregivers/psychology , Patient Preference/psychology , Patients/psychology , Aged , Aged, 80 and over , Female , Home Care Services , Humans , Interviews as Topic/methods , Male , Patient Preference/statistics & numerical data , Patients/statistics & numerical data , Qualitative Research , Quality of Life/psychology
6.
J Pain Symptom Manage ; 58(2): 355-359, 2019 08.
Article in English | MEDLINE | ID: mdl-30904415

ABSTRACT

For most terminally ill patients, the preferred place of death is home. Previous literature has demonstrated the feasibility of at-home terminal extubation performed by critical care and hospice physicians. This case report describes a terminal extubation performed by a paramedic under the direct supervision of an Emergency Medical Services physician in the patient's home. Guided by a comprehensive plan and logistical support from a team of hospice providers, a successful out-of-hospital terminal extubation is possible. To truly achieve patient-centered care at end of life, the choice for an out-of-hospital death is necessary.


Subject(s)
Airway Extubation , Emergency Medical Services , Terminal Care , Death , Humans
7.
J Appl Gerontol ; 38(10): 1371-1390, 2019 10.
Article in English | MEDLINE | ID: mdl-29165012

ABSTRACT

In the United States, managed long-term care programs offer a noninstitutional approach to meeting the needs of increasing numbers of frail elders. Providing services that support both quality of life and quality of dying poses unique challenges. Using a qualitative descriptive design, we explored these challenges from the perspectives of care providers. Themes were identified using qualitative content analysis techniques applied to transcripts of 33 semistructured interviews. Professionals comprising an interdisciplinary care team and home health aide direct care providers described cues by which they identified movement into the end-of-life phase, their understandings of how care changed, and their concerns and recommendations for improvement. When the changing care needs could be met, a "good death" ensued, but that was not always possible. Managed long-term care programs are called upon to develop the capacity to integrate the phase of dying into the full story of each life for which they care.


Subject(s)
Long-Term Care/organization & administration , Managed Care Programs/organization & administration , Quality of Life , Terminal Care , Adult , Attitude of Health Personnel , Female , Humans , Interviews as Topic , Male , Middle Aged , New York , Program Evaluation , Qualitative Research , Young Adult
8.
Prehosp Emerg Care ; 23(3): 356-363, 2019.
Article in English | MEDLINE | ID: mdl-30183448

ABSTRACT

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.


Subject(s)
Death , Decision Making , Emergency Medical Services , Family/psychology , Adult , Aged , Cross-Sectional Studies , Emergency Medical Technicians , Female , Humans , Interviews as Topic , Life Support Care , Male , Middle Aged , Qualitative Research , Research Design , Young Adult
9.
J Palliat Med ; 21(7): 987-991, 2018 07.
Article in English | MEDLINE | ID: mdl-29630432

ABSTRACT

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.


Subject(s)
Allied Health Personnel/psychology , Allied Health Personnel/statistics & numerical data , Attitude of Health Personnel , Attitude to Death , Emergency Medical Services/statistics & numerical data , Long-Term Care/psychology , Terminal Care/psychology , Adult , Aged , Cross-Sectional Studies , Female , Homes for the Aged/statistics & numerical data , Humans , Long-Term Care/statistics & numerical data , Male , Middle Aged , New England , Nursing Homes/supply & distribution , Pilot Projects , Terminal Care/statistics & numerical data , Young Adult
10.
J Pain Symptom Manage ; 55(2): 522-529, 2018 02.
Article in English | MEDLINE | ID: mdl-28919539

ABSTRACT

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.


Subject(s)
Advance Directives , Awareness , Death , Decision Making , Documentation , Terminal Care , Advance Directives/psychology , Caregivers/psychology , Emergency Medical Technicians/psychology , Existentialism , Family/psychology , Heuristics , Humans , Interviews as Topic , Models, Psychological , Stress, Psychological , Terminal Care/psychology
11.
J Appl Res Intellect Disabil ; 30(6): 1057-1064, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28544078

ABSTRACT

BACKGROUND: Emergency medical services (EMS) providers are often called to rapidly determine and act upon patients' wishes for end-of-life care. People with intellectual disabilities are living increasingly longer with complex conditions leading to international calls for person-centred advance care planning. Yet, best estimates suggest that very few people with intellectual disabilities document their wishes. METHODS: This exploratory-descriptive study incorporated mixed methods to analyse data collected consecutively (surveys, n = 239; interviews, n = 48) with EMS providers from five agencies. Data were subjected to a sequential quantitative-qualitative analysis applying a critical discourse analysis framework. RESULTS: Findings indicate that 62.7% had treated a person with intellectual disability who had medical orders directing end-of-life care. Three themes (provider familiarity, organizational processes, sociocultural context) offer insights about how medical orders inform EMS providers during calls involving people with intellectual disabilities. CONCLUSION: Multiple contexts influence how wishes are documented and care provided to people with intellectual disabilities near life's end.


Subject(s)
Attitude of Health Personnel , Decision Making , Emergency Medical Services , Intellectual Disability , Terminal Care , Health Care Surveys , Humans , Qualitative Research
13.
J Am Med Dir Assoc ; 18(1): 35-39, 2017 01.
Article in English | MEDLINE | ID: mdl-27692663

ABSTRACT

OBJECTIVES: What patients intend when they make health care choices and whether they understand the meaning of orders for life-sustaining treatment forms is not well understood. The purpose of this study was to analyze the directives from a sample of emergency department (ED) patients' MOLST forms. PROCEDURES: MOLST forms that accompanied 100 patients who were transported to an ED were collected and their contents analyzed. Data categories included age, gender, if the patient completed the form for themselves, medical orders for life-sustaining treatment including intubation, ventilation, artificial nutrition, artificial fluids or other treatment, and wishes for future hospitalization or transfer. Frequencies of variables were calculated and the associations between them were determined using chi-square. An a priori list of combinations of medical orders that were contradictory was developed. Contradictions with Orders for CPR (cardiopulmonary resuscitation) included the choice of one or more of the following: Comfort care; Limited intervention; Do Not Intubate; No rehospitalization; No IV (intravenous) fluids; and No antibiotics. Contradictions with DNR orders included the choice of one or more of the following: Intubation; No limitation on interventions. Contradictions with orders for Comfort Care were as follows: Send to the hospital; Trial period of IV fluids; Antibiotics. The frequencies of coexisting but contradictory medical orders were calculated using crosstabs. Free text responses to the "other instructions" section were submitted to content analysis. RESULTS: Sixty-nine percent of forms reviewed had at least one section left blank. Inconsistencies were found in patient wishes among a subset (14%) of patients, wherein their desire for "comfort measures only" seemed contradicted by a desire to be sent to the hospital, receive IV fluids, and/or receive antibiotics. CONCLUSIONS: Patients and proxies may believe that making choices and documenting some, but not all, of their wishes on the MOLST form is sufficient for directing their end-of-life care. The result of making some, but not all, choices may result in patients receiving undesired, extraordinary, or invasive care.


Subject(s)
Advance Care Planning , Critical Care , Decision Making , Documentation/standards , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Male , Terminal Care
14.
J Pain Symptom Manage ; 52(2): 187-195.e1, 2016 08.
Article in English | MEDLINE | ID: mdl-27233144

ABSTRACT

CONTEXT: Hospice enrollment for less than one month has been considered too late by some caregivers and at the right time for others. Perceptions of the appropriate time for hospice enrollment in cancer are not well understood. OBJECTIVES: The objectives of the study were to identify contributing factors of hospice utilization in cancer for ≤7 days, to describe and compare caregivers' perceptions of this as "too late" or at the "right time." METHODS: Semistructured, in-depth, in-person interviews were conducted with a sample subgroup of 45 bereaved caregivers of people who died from cancer within seven days of hospice enrollment. Interviews were transcribed and entered into Atlas.ti for coding. Data were grouped by participants' perceptions of the enrollment as "right time" or "too late." RESULTS: Overall, the mean length of enrollment was MLOE = 3.77 (SD = 1.8) days and ranged from three hours to seven days. The "right time" group (N = 25 [56%]) had a MLOE = 4.28 (SD = 1.7) days. The "too late" group (N = 20 [44%]) had a MLOE = 3.06 (SD = 1.03) days. The difference was statistically significant (P = 0.029). Precipitating factors included: late-stage diagnosis, continuing treatment, avoidance, inadequate preparation, and systems barriers. The "right time" experience was characterized by: perceived comfort, family needs were met, preparedness for death. The "too late" experience was characterized by perceived suffering, unprepared for death, and death was abrupt. CONCLUSION: The findings suggest that one more day of hospice care may increase perceived comfort, symptom management, and decreased suffering and signal the need for rapid response protocols.


Subject(s)
Bereavement , Caregivers/psychology , Hospice Care/psychology , Neoplasms/mortality , Neoplasms/therapy , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Hospice Care/statistics & numerical data , Humans , Interviews as Topic , Male , Middle Aged , Perception , Qualitative Research , Retrospective Studies , Time Factors
15.
J Pain Symptom Manage ; 50(3): 328-34, 2015 Sep.
Article in English | MEDLINE | ID: mdl-25828561

ABSTRACT

CONTEXT: Emergency 911 calls are often made when the end stage of an advanced illness is accompanied by alarming symptoms and substantial anxiety for family caregivers, particularly when an approaching death is not anticipated. How prehospital providers (paramedics and emergency medical technicians) manage emergency calls near death influences how and where people will die, if their end-of-life choices are upheld and how appropriately health care resources are used. OBJECTIVES: The purpose of this study was to explore and describe how prehospital providers assess and manage end-of-life emergency calls. METHODS: In-depth and in-person interviews were conducted with 43 prehospital providers. Interviews were audiotaped, transcribed, and entered into ATLAS.ti for data management and coding. Qualitative data analysis involved systematic and axial coding to identify and describe emergent themes. RESULTS: Four themes illustrate the nature and dynamics of emergency end-of-life calls: 1) multifocal assessment (e.g., of the patient, family, and environment), 2) family responses (e.g., emotional, behavioral), 3) conflicts (e.g., missing do-not-resuscitate order, patient-family conflicts), and 4) management of the dying process (e.g., family witnessed resuscitation or asking family to leave, decisions about hospital transport). After a rapid comprehensive multifocal assessment, family responses and the existence of conflicts mediate decision making about possible interventions. CONCLUSION: The importance of managing symptom crises and stress responses that accompany the dying process is particularly germane to quality care at life's end. The results suggest the importance of increasing prehospital providers' abilities to uphold advance directives and patients' end-of-life wishes while managing family emotions near death.


Subject(s)
Emergency Medical Services/methods , Emergency Medical Technicians/psychology , Terminal Care/methods , Terminal Care/psychology , Adult , Attitude of Health Personnel , Conflict, Psychological , Cross-Sectional Studies , Death , Environment , Family/psychology , Female , Humans , Interviews as Topic , Male , Personal Autonomy , Resuscitation Orders/psychology , Stress, Psychological
16.
Palliat Support Care ; 13(5): 1283-91, 2015 Oct.
Article in English | MEDLINE | ID: mdl-25358963

ABSTRACT

OBJECTIVE: Our purpose was to rigorously examine the nature of family meetings as conducted in an inpatient hospice care unit in order to generate an inductive theoretical model. METHOD: In this two-phase project, we first interviewed eight members of the interdisciplinary care team who participated in multiple family meetings each week. Interview questions explored why and how they conducted family meetings. Using an observation template created from these interview data, we subsequently conducted ethnographic observations during family meetings. Using the methods of grounded theory, our findings were synthesized into a theoretical model depicting the structure and process of formal family meetings within this setting. RESULTS: The core of the family meeting was characterized by cognitive and affective elements aimed at supporting the family and facilitating quality care by clarifying the past, easing the present, and protecting the future. This inductive model was subsequently found to be highly aligned with a sense of coherence, an important influence on coping, and adaptation to the stress of a life-limiting illness. SIGNIFICANCE OF RESULTS: Provider communication with family members is particularly critical during advanced illness and end-of-life care. The National Consensus Project clinical practice guidelines for quality palliative care list regular family meetings among the recommended practices for excellent communication during end-of-life care, but do not provide specific guidance on how and when to provide such meetings. Our findings provide a theoretical model that can inform the design of a family meeting to address family members' needs for meaningful and contextualized information, validation of their important contributions to care, and preparation for the patient's death.


Subject(s)
Family/psychology , Palliative Care/standards , Patient Care Team/standards , Professional-Family Relations , Terminal Care/standards , Adult , Anthropology, Cultural , Attitude of Health Personnel , Communication , Decision Making , Female , Hospices , Humans , Inpatients , Interviews as Topic , Male , Middle Aged , Models, Theoretical , New York , Palliative Care/psychology , Patient Care Team/organization & administration , Practice Guidelines as Topic , Tape Recording , Terminal Care/psychology
17.
J Palliat Med ; 17(3): 338-41, 2014 Mar.
Article in English | MEDLINE | ID: mdl-24517266

ABSTRACT

BACKGROUND: Prehospital emergency providers (emergency medical technicians [EMTs] and paramedics) who respond to emergency calls for patients near the end of life (EOL) make critical decisions in the field about initiating care and transport to an emergency department. OBJECTIVE: To identify how a sample of prehospital providers learned about EOL care, their perceived confidence with and perspectives on improved preparation for such calls. DESIGN: This descriptive study used a cross-sectional survey design with mixed methods. SETTING/PARTICIPANTS: One hundred seventy-eight prehospital providers (76 EMT-basics and 102 paramedics) from an emergency medical services agency participated. MEASUREMENTS: Multiple choice and open-ended survey questions addressed how they learned about EOL calls, their confidence with advance directives, and perspectives on improving care in the field. RESULTS: The response rate was 86%. Education about do-not-resuscitate (DNR) orders was formal (92%), experiential (77%), and self-directed (38%). Education about medical orders for life-sustaining treatment (MOLST) was formal (72%), experiential (67%), and self-directed (25%). Ninety-three percent were confident in upholding a DNR order, 87% were confident interpreting MOLST, and 87% were confident sorting out conflict between differing patient and family wishes. Qualitative data analysis yielded six themes on improving preparation of prehospital providers for EOL calls: (1) prehospital provider education; (2) public education; (3) educating health care providers on scope of practice; (4) conflict resolution skills; (5) handling emotional families; and (6) clarification of transfer protocols. CONCLUSION: These study results suggest the need for addressing the potential interrelationship between prehospital and EOL care through improved education and protocols for care in the field.


Subject(s)
Emergency Medical Technicians , Terminal Care , Attitude of Health Personnel , Cross-Sectional Studies , Emergency Medical Technicians/psychology , Female , Humans , Life Support Care , Male , Professional Competence , Resuscitation Orders , Self Efficacy
18.
J Pain Symptom Manage ; 47(5): 887-95, 2014 May.
Article in English | MEDLINE | ID: mdl-24035069

ABSTRACT

CONTEXT: Despite improvements in end-of-life care, some unrelieved suffering persists for patients with advanced illness and their family members. Hospice and palliative care services can reduce suffering, but these services remain under-used. OBJECTIVES: To investigate how patients with advanced illness and their primary caregivers experienced and responded to health care needs and decision making and how some dyads moved toward comfort-focused care. METHODS: This was a qualitative study using the grounded theory method for sample selection, data collection, and analysis. Dyadic semi-structured interviews were audio-recorded and transcribed for analysis. Twenty-two participants, 12 patients and 10 family surrogates, provided 16 interviews for this study. RESULTS: Participants engaged in a process of contending with advanced illness. The major phases comprising this process were suffering, struggling, and settling. Struggling included enduring the experience and fighting the illness. During the phase of settling, the focus shifted away from curative efforts and toward supportive care. Conditions that facilitated the movement into this phase included receiving clear and consistent information about the patient's health status, trusting health care providers, having attended to advance care planning in some form, and being aware of and able to acknowledge the terminal nature of the illness. CONCLUSION: Findings from this pilot study offer a preliminary theoretical model to enhance the understanding of patient and family caregiver needs during advanced illness. Awareness of their perspective can inform the timing and content of clinicians' communication and interventions.


Subject(s)
Family/psychology , Terminal Care/psychology , Terminally Ill/psychology , Adult , Aged , Decision Making , Female , Humans , Interviews as Topic , Male , Middle Aged , Models, Psychological , Pilot Projects , Qualitative Research , Young Adult
19.
Palliat Support Care ; 12(3): 211-21, 2014 Jun.
Article in English | MEDLINE | ID: mdl-23942112

ABSTRACT

OBJECTIVE: The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment. METHOD: An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families. RESULTS: The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at life's end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices. SIGNIFICANCE OF RESULTS: Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.


Subject(s)
Advance Care Planning/standards , Caregivers/psychology , Hospice Care/psychology , Terminally Ill/psychology , Aged , Aged, 80 and over , Caregivers/standards , Cross-Sectional Studies , Decision Making , Female , Hospice Care/standards , Humans , Interviews as Topic , Male , Qualitative Research
20.
Soc Work Health Care ; 52(4): 332-50, 2013.
Article in English | MEDLINE | ID: mdl-23581837

ABSTRACT

Research on the relationship between intimate partner violence (IPV) and postpartum depression (PPD) is limited. Numerous antecedents and consequences of both IPV and PPD are noted in the literature; however, understanding the mechanisms by which intimate partner violence impacts the postpartum mood are not clearly understood. This study utilized retrospective chart reviews from a pediatric/perinatal social work outreach program to explore urban minority women experiences with IPV and depression both during pregnancy and after. Findings do not suggest a direct relationship between IPV and PPD; however, there was a high co-occurrence of prenatal depression and PPD. The severity of IPV appears to influence the occurrence and acuity of prenatal depression suggesting an indirect relationship. Implications for health and social work practitioners are discussed.


Subject(s)
Depression, Postpartum/epidemiology , Depression, Postpartum/psychology , Domestic Violence/psychology , Domestic Violence/statistics & numerical data , Pregnant Women/psychology , Sexual Partners/psychology , Adolescent , Adult , Black or African American/statistics & numerical data , Female , Hispanic or Latino/statistics & numerical data , Humans , Male , Minority Groups , New England/epidemiology , Poverty , Pregnancy , Retrospective Studies , Surveys and Questionnaires , Urban Population , Vulnerable Populations , Young Adult
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