The Evolutionary Nature of Parent-Provider Relationships at Child's End of Life With Cancer.

Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their bereavement. Therefore, the purpose of this study was to understand parental experiences about their relationships with providers at their child's end of life with cancer and describe the manifestations of their grief. In this hermeneutic study, data were collected through interviews with bereaved parents and observation of families and health care providers in the hospital setting. Parents variously experienced complex relationships characterized by support, collaboration, trust, silence, deterioration, hierarchy, and tolerating, which were interchangeable and varied overtime, as new meanings were incorporated into their experiences. Through better understanding of the nature of these relationships, nurses can provide leadership in research and practice for identifying consequences of their care.

Invitation to grief in the family context.

Grief is a family affair, yet it is commonly viewed as an individual phenomenon. As an international, interdisciplinary team, we explore grief within a family context across theoretical, research, practice, and educational domains. Families are complex and working with this complexity is challenging but necessary for a holistic view of grief. We therefore encourage an increased focus on theorizing, researching, practicing, and educating using innovative approaches to address the complexities of grief within the context of families. Learnings from within each domain will affirm and enhance the development of family-level thinking and approaches.

Numeracy and Interpretation of Prognostic Estimates in Intracerebral Hemorrhage Among Surrogate Decision Makers in the Neurologic ICU.

OBJECTIVE: Clinicians caring for patients with intracerebral hemorrhage must often discuss prognosis and goals of care with their patients' surrogate decision makers, and may make numeric estimates of likelihood of survival and functional independence, informed by validated prediction models. Surrogates' prognostic estimates are often discordant with physicians', suggesting that physicians' numeric statements may not be accurately interpreted. We sought to assess the relationship between numeracy and interpretation of prognostic estimates in intracerebral hemorrhage among surrogate decision makers. We also assessed surrogates' application of prognostic estimates to decisions regarding goals of care. DESIGN: Single-center, survey-based, cross-sectional study. SETTING: Twenty-two-bed neurologic ICU at an urban, academic hospital. SUBJECTS: Surrogate decision makers for patients admitted to the neurologic ICU. INTERVENTIONS: Participants completed a survey containing five clinical vignettes describing patients with nontraumatic intracerebral hemorrhage. For each patient, numerical estimates of survival and functional independence were explicitly provided, based on the validated outcome risk stratification scale (intracerebral hemorrhage score) and the Prediction of Functional Outcome in Patients with Primary Intracerebral Hemorrhage score. MEASUREMENTS AND MAIN RESULTS: Participants were asked to make their own prognostic estimates, as well as to describe their preferred goals of care for each hypothetical patient. Respondent demographics were collected, and numeracy was assessed using a modified Lipkus 11-item scale. Poor numeracy was common (42 of 96 total subjects) in this relatively highly educated population. Most prognostic estimates (55%) made by surrogates were discordant with the provided estimates. High numeracy correlated with better concordance (odds ratio, 23.9 [5.57-97.64]; p < 0.001), independent of several factors, including level of education and religion. Numeracy also affected goals-of-care decisions made by surrogates. CONCLUSIONS: Poor numeracy is common among surrogate decision makers in an intensive care setting and poses a barrier to communication between surrogates and clinicians regarding prognosis and goals of care.

Measuring Acute Pain Over Time in the Critically Ill Using the Multidimensional Objective Pain Assessment Tool (MOPAT).

BACKGROUND: A valid and reliable instrument is needed to assess acute pain in critically ill patients unable to self-report and who may be transitioning between critical care and other settings. AIM: To examine the reliability, validity, and clinical utility of the Multidimensional Objective Pain Assessment Tool (MOPAT) when used over time by critical care nurses to assess acute pain in non-communicative critically ill patients. METHODS: Twenty-seven patients had pain assessed at two time points (T1 and T2) surrounding a painful event for up to 3 days. Twenty-one ICU nurses participated in pain assessments and completed the Clinical Utility Questionnaire. RESULTS: Internal consistency reliability coefficient alphas for the MOPAT were .68 at T1 and .72 at T2. Inter-rater agreement during painful procedures or turning was 68% for the behavioral dimension and 80% for the physiologic dimension. Validity was evidenced by decreases (p < .001) in the MOPAT total and behavioral and physiologic dimension scores when comparing T1 and T2. Nurses found the tool clinically useful. CONCLUSION: The MOPAT can be used in the critical care setting as a helpful tool to assess pain in non-communicative patients. The MOPAT is unique in that the instrument can be used over time and across settings.

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.

The culture contributing to interruptions in the nursing work environment: An ethnography.

AIMS AND OBJECTIVES: To understand the occurrence of interruptions within the culture of the medical nursing unit work environment. BACKGROUND: Interruptions may lead to errors in nursing work. Little is known about how the culture of the nursing work environment contributes to interruptions. DESIGN: A micro-focused ethnographic study was conducted. METHOD: Data collection involved extensive observation of a nursing unit, 1:1 observations of nurses and follow-up interviews with the nurses. Data were analysed from unstructured field notes and interview transcripts. The definitions of interruption and culture guided coding, categorising and identification of themes. RESULTS: A framework was developed that describes the medical nursing unit as a complex culture full of unpredictable, nonlinear changes that affect the entire interconnected system, often in the form of an interruption. The cultural elements contributing to interruptions included (i) the value placed on excellence in patient care and meeting personal needs, (ii) the beliefs that the nurses had to do everything by themselves and that every phone call was important, (iii) the patterns of changing patients, patient transport and coordination of resources and (iv) the normative practices of communicating and adapting. CONCLUSIONS: Interruptions are an integral part of the culture of a medical nursing unit. Uniformly decreasing interruptions may disrupt current practices, such as communication to coordinate care, that are central to nursing work. In future research, the nursing work environment must be looked at through the lens of a complex system. RELEVANCE TO CLINICAL PRACTICE: Interventions to minimise the negative impact of interruptions must take into account the culture of the nursing as a complex adaptive system. Nurses should be educated on their own contribution to interruptions and issues addressed at a system level, rather than isolating the interruption as the central issue.

Asking questions of a palliative care nurse practitioner on a pancreatic cancer website.

OBJECTIVE: Increasing evidence demonstrates the benefits of online cancer interventions but very little about the needs of those with pancreatic cancer or interaction with online providers. Our study was done to (1) see how many people would visit a webpage where they could interact with a palliative care nurse practitioner (PCNP), (2) see how many would ask the PCNP questions, (3) determine the type of questions, and (4) obtain feedback regarding the usefulness of the webpage. METHOD: Mixed-methods descriptive design. RESULTS: There were 2174 visits to the webpage, and a total of 84 participants sent 110 questions/comments. Some 28 (33%) were people worried that they might have pancreatic cancer. Most questions (59, 53%) had to do with palliative care issues, with the largest subgroup (26, 23%) involving psychological concerns. A total of 39 completed an online survey and were relatives (20, 52%), or patients (17, 44%). They rated the webpage at 3.3/4 as being helpful at learning about the physical symptoms/treatments of pancreatic cancer, at 3.1/4 for learning about emotional issues, at 3/4 for learning about palliative care, at 2.8/4 for learning about hospice, and at 3.3/4 for reading other people's questions. SIGNIFICANCE OF RESULTS: The PCNP webpage was a helpful resource. Most asking questions were worried about having or getting pancreatic cancer. More research is needed into online providers, interventions, and conducting research online.

Family-centered end-of-life care in the ICU.

Families of older adults are intricately involved in the end-of-life decision-making process for a family member with a serious illness in the intensive care unit (ICU) setting. However, families are not always as involved and as informed as they would like to be. Creating a culture that assesses family needs and supports families is an important component of family-centered care. There are several strategies that nurses and other members of the interdisciplinary team can use to promote family-centered end-of-life care in the ICU. Nurses can get to know the family by spending time talking with them, assessing them, seeking to understand their perspectives on their family member's condition, and discussing previously verbalized patient wishes for care. This article offers strategies nurses can use to help guide the family through the end-of-life decision-making process, support families as difficult and complex decisions are made in collaboration with the health care team, and prepare families for the dying process.

Self-described Nursing Responses Experienced During Care of Dying Patients and Their Families: A Phenomenological Study.

Critical care nurses care for dying patients and their families. Little is known about the feelings and experiences of critical care nurses and how they are affected when they provide end-of-life care. Study purpose was to understand lived experiences, responses, and feelings of critical care nurses providing end-of-life care. A descriptive phenomenological design with purposive sampling was used to recruit 19 critical care nurses who cared for dying patients and their families. Interviews were recorded and transcribed verbatim. Nurses were asked open-ended questions about experiences and responses while providing end-of-life care. Coliazzi's method of data analysis was used to inductively determine themes, clusters, and categories. Data saturation was achieved, and methodological rigor was established. Responses included personalizing the experience, sadness, ageism, anger, frustration, relief, and stress. Factors contributing to clinicians' lived experience included previous experiences with death affecting how the experience was personalized among others. Critical care nurses may be unprepared for feelings and responses encountered during end-of-life care. Preparation for feelings and responses encountered during end-of-life care in nursing education and critical care orientation classes is essential. Future research should study optimal mentoring, teaching, and preparation for providing optimal end-of-life care. Study results have implications for practice, education, and research.

Consequences of clinical situations that cause critical care nurses to experience moral distress.

Little is known about the consequences of moral distress. The purpose of this study was to identify clinical situations that caused nurses to experience moral distress, to understand the consequences of those situations, and to determine whether nurses would change their practice based on their experiences. The investigation used a descriptive approach. Open-ended surveys were distributed to a convenience sample of 204 critical care nurses employed at a university medical center. The analysis of participants' responses used an inductive approach and a thematic analysis. Each line of the data was reviewed and coded, and the codes were collapsed into themes. Methodological rigor was established. Forty-nine nurses responded to the survey. The majority of nurses had experienced moral distress, and the majority of situations that caused nurses to experience moral distress were related to end of life. The nurses described negative consequences for themselves, patients, and families.

Family management after the sudden death of a family member.

Although more is known about how individuals within families make decisions and manage more discrete issues when a family member is dying, less is known about how families as a unit manage after the sudden death of a family member. The article discusses an investigation that was conducted to better understand how families respond to the life-threatening illness or injury and eventual death of a family member. The purpose of the study was to define Family Management Styles (FMSs) and determine distinctive characteristics of each FMS used by families after the death of a family member who had life-sustaining therapy withdrawn as a result of an unexpected, life-threatening illness or injury. Interviews are conducted with 8 families (22 family members) 1 to 2 years after the death of their family members. A modified typology of FMSs based on a directed analysis that was then inductively modified includes: progressing, accommodating, maintaining, struggling, and floundering. Understanding FMSs and how FMSs may change over time, reflecting the changing focus of family work, will further aid in the development of family-focused interventions as well as develop FMSs within the context of end of life.

What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis.

BACKGROUND: The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. AIM: To explore how ACP did or did not contribute to a spokespersons' understanding of patient wishes after engaging in ACP. DESIGN: Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. SETTING/PARTICIPANTS: 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. RESULTS: ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients' wishes, and 3) complicated emotions impacting end-of-life discussions. CONCLUSIONS: Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.

Family Bereavement Adaptation After Death of a Loved One in an Intensive Care Unit: Impact of Race/Ethnicity.

Limited longitudinal studies have hindered the understanding of family adaptation after loss of a loved one in an intensive care unit (ICU). Based on the Double ABCX Model, this study examined changes in adaptation to bereavement for family members in the first year after the ICU death, with special attention to the effects of race/ethnicity. A repeated-measures design was used to conduct the investigation using 3 time points (1-3, 6, and 12 months) after the ICU death. Data were analyzed using linear mixed modeling. Family members (n = 30) consisted of 60% non-Hispanic Whites and 40% African Americans (AAs). During the first 1 to 3 months, moderate to severe symptoms of posttraumatic stress disorder, depression, anxiety, and stress were found (60%, 40%, 30%, and 26.7%, respectively). Initially, non-Hispanic Whites had higher depression scores than African Americans. The change in depression and posttraumatic stress disorder symptoms over 1 year differed by race/ethnicity. Many family members tended to be at risk of psychological sequelae in the early months after a patient's death in an ICU. Racial/ethnic differences in bereavement process need further exploration to understand the broader context within family members grieve and effectively offer support over the course of the first year.

Seeing the Patient and Family Through: Nurses and Physicians Experiences With Withdrawal of Life-Sustaining Therapy in the ICU.

Withdrawal of life-sustaining therapy at the end of life is a complex phenomenon. Intensive care nurses and physicians are faced with caring for patients and supporting families, as these difficult decisions are made. The purpose of this study was to explore and describe the experience of critical care nurses and physicians participating in the process of withdrawal of life-sustaining therapy. A hermeneutic phenomenological approach was used to guide this qualitative investigation. Interviews were conducted with critical care nurses and physicians from 2 medical centers. An inductive approach to data analysis was used to understand similarities between the nurses and the physicians' experiences. Methodological rigor was established, and data saturation was achieved. The main categories that were inductively derived from the data analysis included from novice to expert, ensuring ethical care, uncertainty to certainty, facilitating the process, and preparing and supporting families. The categories aided in understanding the experiences of nurses and physicians, as they worked individually and together to see patients and families through the entire illness experience, withdrawal of life-sustaining therapy decision-making process and dying process. Understanding the perspectives of health-care providers involved in the withdrawal of life-sustaining therapy process will help other health-care providers who are striving to provide quality care to the dying and to their families.

Anticipatory grief and impaired problem solving among surrogate decision makers of critically ill patients: A cross-sectional study.

OBJECTIVES: Anticipatory grief, the experience of grief before the death of a mourned individual, is common among people with seriously ill loved ones and associated with impaired social problem solving. We sought to evaluate anticipatory grief in the Intensive Care Unit setting. RESEARCH METHODOLOGY/DESIGN: Cross-sectional study of surrogate decision-makers of patients admitted to an intensive care unit, incorporating survey methodology. SETTING: Intensive care units at a tertiary care centre. MAIN OUTCOME MEASURES: Surrogates completed a 78-question, self-administered questionnaire consisting of demographic and clinical data, as well as three validated instruments: Anticipatory Grief Scale (AGS), Hospital Anxiety and Depression Scale (HADS), and Social Problem Solving Inventory Revised Short Form (SPSI-R:S). MAIN RESULTS: Surveys were completed by 50 surrogate decision-makers, among whom anticipatory grief was elevated and associated with anxiety and depression. Anticipatory grief was also significantly associated with worsened overall problem solving (Spearman's Rho -0.32, p value 0.02). Surrogates with loved ones who were older or admitted to a trauma unit experienced anticipatory grief at lower levels. Prior admission and Charlson Comorbidity Index scores were not associated with anticipatory grief. CONCLUSION: Levels of anticipatory grief in the intensive care unit are high and associated with concurrent anxiety and depression. Association of anticipatory grief with worsened social problem solving may worsen decision making ability in surrogates.

The lived experience of individuals in cardiac rehabilitation who have a positive outlook on their cardiac recovery: A phenomenological inquiry.

BACKGROUND: Cardiac rehabilitation is often under-utilized despite its well-known benefits. Individuals with cardiac disease who exhibit a positive outlook often experience improved health outcomes. This study tried to explore the question: "What are the lived experiences of cardiac recovery in cardiac rehabilitation individuals with a predominantly positive outlook in the context of an acute cardiac event?" AIMS: Our primary aim explored the experiences of cardiac recovery in cardiac rehabilitation participants with a predominantly positive outlook, within the context of an acute cardiac event, including exploring barriers and facilitators of cardiac recovery. Our secondary aim explored how a positive outlook impacted completion of phase two of the cardiac rehabilitation program. METHODS: Husserlian phenomenology guided this study. A purposive sample of 10 individuals who had experienced an acute cardiac event and had a predominantly positive outlook were interviewed. Data were analyzed using Colaizzi's method. RESULTS: Three themes emerged from the data. The first was "choosing life over death," where participants discussed how they made a decision to improve their health. The second theme was "learning to live a new self," where participants described the changes they had to make in order to improve their health. The third theme was "a life-transforming cardiac event" where participants shared how the cardiac event had changed their life. CONCLUSION: The participants' decisions to choose to live, led them to embrace their cardiac recovery. It is important for nurses to identify individuals in cardiac rehabilitation that need additional support. In addition, alternative models of cardiac rehabilitation programs need to be explored.

Family Presence at First Cardiopulmonary Resuscitation and Subsequent Limitations on Care in the Medical Intensive Care Unit.

BACKGROUND: The association of family-witnessed cardiopulmonary resuscitation (CPR) and subsequent advance directives in the medical intensive care unit is unknown. OBJECTIVE: To compare clinical outcomes, including subsequent limitations on care, of family-witnessed vs family-unwitnessed CPR in the inpatient setting. METHODS: Analysis of demographics and outcomes pertaining to family presence in a retrospective cohort of consecutive patients receiving first CPR in the medical intensive care unit of a tertiary academic medical center. RESULTS: In 5 years, 323 patients underwent attempted CPR, of which 49 attempts (15.2%) were witnessed by family. In patients with return of spontaneous circulation, 40.9% of those whose first CPR was witnessed by family later had a do not attempt resuscitation order, which did not differ from patients whose first CPR was unwitnessed by family (31.8%). Family-witnessed CPR in the unit was associated with significantly lower rates of return of spontaneous circulation (44.9%) than was family-unwitnessed CPR (62.0%; P = .02). Of all patients with a first CPR, 42 (13.0%) survived to hospital discharge. Only 1 patient with return of spontaneous circulation after first family-witnessed CPR survived to hospital discharge. In-hospital mortality for all patients requiring subsequent CPR was 97.1%. CONCLUSIONS: For unclear reasons, family-witnessed CPR in the medical intensive care unit is associated with a similar rate of subsequent CPR efforts and lower rates of return of spontaneous circulation and survival to hospital discharge.

Family Experiences During the Dying Process After Withdrawal of Life-Sustaining Therapy.

BACKGROUND: Life-sustaining therapy is commonly withdrawn in intensive care units, yet little is known about the perceptions of families when a critically ill patient dies after life-sustaining therapy is withdrawn. AIM: The purpose of this investigation was to understand the experience of families when a family member had an unexpected life-threatening illness or injury and who died after life-sustaining therapy was withdrawn. METHODS: This investigation used a hermeneutic phenomenological approach. Interviews were conducted with family members after the patient's death. All interviews were transcribed with units of meaning and clusters, and then categories inductively determined. Methodological rigor was established. SETTING/PARTICIPANTS: A purposive sample of family members was recruited into the study from 3 intensive care units. Twenty-two family members participated in the study. RESULTS: Six categories evolved from the analysis: preparing for the dying process, the dying environment, perceptions of patient comfort, the death vigil, essential aspects of care, and together as a family. Families described the death vigil as extremely difficult. Family members described several aspects of care as very meaningful to them during the dying process. Families described how important it was for the family to be together as a family during the dying process.

Palliative and End-of-Life Ethical Dilemmas in the Intensive Care Unit.

Critical care nurses and advanced practice registered nurses frequently face bioethical dilemmas in clinical practice that are related to palliative and end-of-life care. Many of these dilemmas are associated with decisions made concerning continuing, limiting, or withdrawing life-sustaining treatments. The purpose of this article is to describe common ethical challenges through case study presentations and discuss approaches that critical care nurses and advanced practice registered nurses in collaboration with the interdisciplinary team can use to address these challenges. Resources that may be helpful in managing ethical dilemmas are identified.