Psychosocial burden in transfusion dependent beta-thalassemia patients and its impact on the quality of life and the problem of dignity.

Beta-thalassemia major is a genetic blood disorder that impacts hemoglobin production with several symptoms that decrease quality of life in patients. Blood transfusions may help them to regulate their hemoglobin needs, though this is a lifelong intervention. Struggling with dependent blood transfusion status impacts patients greatly including their bio, psycho, social, and spiritual health, potentially raising a bioethical issue related to human dignity.

Palliative Care: Oncology Nurses' Confidence in Provision to Patients With Cancer.

BACKGROUND: Oncology nurses are key providers of care to patients with cancer in all healthcare settings. However, little is known about oncology nurses' perceived confidence in providing all of the domains of palliative care. OBJECTIVES: The objectives of this study were to examine oncology nurses' perceived confidence in providing palliative care to patients with cancer and to identify the association between nurses' demographic and professional characteristics and their perceived confidence. METHODS: A descriptive correlational design was employed. The sample included RNs who provided care to patients with cancer and were members of the Oncology Nursing Society (ONS). Participants completed an online survey consisting of 14 demographic questions and a 50-item palliative care confidence scale. FINDINGS: Three hundred sixty-six ONS members completed the survey. Results showed that most oncology nurses were confident to very confident in providing palliative care to patients with cancer, but they lacked confidence in providing the psychosocial, spiritual, and legal and ethical aspects of care. Years of experience as an oncology nurse and palliative care training were significantly associated with perceived confidence in providing palliative care.

Longitudinal family caregiving experiences in heart failure: Secondary qualitative analysis of interviews.

BACKGROUND: Considering the potential impacts of family caregivers on heart failure management and the costs of healthcare, health professionals need to pay attention to the challenges faced by family caregivers. OBJECTIVE: This study longitudinally explored the caregiving experiences of family caregivers of persons with heart failure. METHODS: Serial interview scripts collected from 53 family caregivers were analyzed using a content analysis method. RESULTS: The following themes emerged: (1) accumulating knowledge and skills for caregiving; (2) losing a sense of control; (3) balancing an unstable life; (4) constructing illness memory; (5) centering the patient in daily life; (6) accepting the loss of a family member; (7) coping with grief by drawing on social support; (8) facing financial responsibility; and (9) rethinking hospice care. CONCLUSION: Family caregivers experience concern about unpredictable caregiving years, disease's fluctuating symptoms and poor prognosis. More educational opportunities, financial counseling programs, and palliative care consultations should be provided.

End-of-Life Care in Cardiothoracic Surgery.

Patients undergoing cardiothoracic surgery face a small but significant mortality risk. Despite this, end-of-life care specific to this population has received little attention. This article examines current literature on end-of-life care in cardiothoracic surgery and in critical care. Recommendations for management at the end of life are made based on the available evidence.

Family caregiver-reported outcomes regarding decision-making for left ventricular assist device implantation.

BACKGROUND: Family caregivers (FCGs) often participate in the decision for their loved one to receive a left ventricular assist device (LVAD). Little is known about the contribution of FCGs to this complex decision. OBJECTIVES: To investigate family caregiver-reported outcomes related to decision-making for LVAD implantation and their experiences post-implantation. METHODS: Descriptive thematic analysis was used to analyze longitudinal data. Thematic saturation was achieved. RESULTS: Three key themes emerged from the data. The main theme in the pre-implantation period was: Not a decision. The two themes in the post-implantation period were: More satisfaction than regret and Unanticipated situational change. CONCLUSIONS: Family caregiver-reported outcomes inform clinical practice and future research. FCGs of LVAD recipients did not see viable alternatives to LVAD implantation, were generally satisfied with post-implantation outcomes, and experienced unexpected life changes in the post-implantation period despite feeling prepared preoperatively. Education of both LVAD recipients and their FCGs must be optimized.

Defining Futile and Potentially Inappropriate Interventions: A Policy Statement From the Society of Critical Care Medicine Ethics Committee.

OBJECTIVES: The Society of Critical Care Medicine and four other major critical care organizations have endorsed a seven-step process to resolve disagreements about potentially inappropriate treatments. The multiorganization statement (entitled: An official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units) provides examples of potentially inappropriate treatments; however, no clear definition is provided. This statement was developed to provide a clear definition of inappropriate interventions in the ICU environment. DESIGN: A subcommittee of the Society of Critical Care Medicine Ethics Committee performed a systematic review of empirical research published in peer-reviewed journals as well as professional organization position statements to generate recommendations. Recommendations approved by consensus of the full Society of Critical Care Medicine Ethics Committees and the Society of Critical Care Medicine Council were included in the statement. MEASUREMENTS AND MAIN RESULTS: ICU interventions should generally be considered inappropriate when there is no reasonable expectation that the patient will improve sufficiently to survive outside the acute care setting, or when there is no reasonable expectation that the patient's neurologic function will improve sufficiently to allow the patient to perceive the benefits of treatment. This definition should not be considered exhaustive; there will be cases in which life-prolonging interventions may reasonably be considered inappropriate even when the patient would survive outside the acute care setting with sufficient cognitive ability to perceive the benefits of treatment. When patients or surrogate decision makers demand interventions that the clinician believes are potentially inappropriate, the seven-step process presented in the multiorganization statement should be followed. Clinicians should recognize the limits of prognostication when evaluating potential neurologic outcome and terminal cases. At times, it may be appropriate to provide time-limited ICU interventions to patients if doing so furthers the patient's reasonable goals of care. If the patient is experiencing pain or suffering, treatment to relieve pain and suffering is always appropriate. CONCLUSIONS: The Society of Critical Care Medicine supports the seven-step process presented in the multiorganization statement. This statement provides added guidance to clinicians in the ICU environment.

ICU Admission, Discharge, and Triage Guidelines: A Framework to Enhance Clinical Operations, Development of Institutional Policies, and Further Research.

OBJECTIVES: To update the Society of Critical Care Medicine's guidelines for ICU admission, discharge, and triage, providing a framework for clinical practice, the development of institutional policies, and further research. DESIGN: An appointed Task Force followed a standard, systematic, and evidence-based approach in reviewing the literature to develop these guidelines. MEASUREMENTS AND MAIN RESULTS: The assessment of the evidence and recommendations was based on the principles of the Grading of Recommendations Assessment, Development and Evaluation system. The general subject was addressed in sections: admission criteria and benefits of different levels of care, triage, discharge timing and strategies, use of outreach programs to supplement ICU care, quality assurance/improvement and metrics, nonbeneficial treatment in the ICU, and rationing considerations. The literature searches yielded 2,404 articles published from January 1998 to October 2013 for review. Following the appraisal of the literature, discussion, and consensus, recommendations were written. CONCLUSION: Although these are administrative guidelines, the subjects addressed encompass complex ethical and medico-legal aspects of patient care that affect daily clinical practice. A limited amount of high-quality evidence made it difficult to answer all the questions asked related to ICU admission, discharge, and triage. Despite these limitations, the members of the Task Force believe that these recommendations provide a comprehensive framework to guide practitioners in making informed decisions during the admission, discharge, and triage process as well as in resolving issues of nonbeneficial treatment and rationing. We need to further develop preventive strategies to reduce the burden of critical illness, educate our noncritical care colleagues about these interventions, and improve our outreach, developing early identification and intervention systems.

Patients' decision making process and expectations of a left ventricular assist device pre and post implantation.

OBJECTIVES: To examine patients' pre-implantation decision-making and pre and post-implantation expectations of left ventricular assist devices (LVADs). BACKGROUND: LVADs have been shown to improve both quantity and quality of life of patients living with Stage D heart failure (HF). However, they also pose significant risks. METHODS: 15 LVAD participants followed in a longitudinal study of Stage D HF patients were included in this thematic analysis. RESULTS: Three themes were identified: no choice; I thought I would be doing better; I feel good, but now what. Evidence from pre-implantation to post-implantation suggested that patients' perceived expectations of quality of life improvement were not met. CONCLUSIONS: In light of their declining health, most patients felt their only alternative to implantation was death. In the post-implantation period, patients expected greater improvements in their quality of life. Evidence based guidelines for discussions of goals of care, post-implant expectations, and palliative care are necessary.