Patient End-of-life Research Articles

Perspectives on Death and Dying by the Bereaved Designated Personal Representatives of Women Diagnosed With Metastatic Breast Cancer.

Metastatic breast cancer (MBC) is a complex disease with variability in disease subtype, length of survival, treatment selection, symptom burden, and, ultimately, end-of-life (EOL) care. Influencing factors that contribute to the complexity of this disease are socioeconomic factors, provider differences, and patient and family preferences. Because of this variability, it is challenging for health care providers to know when treatments are no longer helpful but contribute to a poor quality of end-of-life care and a poor death experience for both patients and their families. Determining the unique point, based on their own values and goals, at which patients and their family members feel that MBC treatment becomes unhelpful and unwanted, is difficult to ascertain. Of the 25 individuals who participated in the Quality of Death and Dying survey, 16 individuals participated in an interview to provide a reflection of the patient's EOL experience and its congruence with their wishes. Four major categories emerged as primary priorities essential to high quality end-of-life care, that is, resilience, communication, support, and knowledge. Without tailored and precise care, patients with MBC will continue to receive prolonged, inappropriate, and costly treatment, resulting in a potentially unacceptable poor-quality EOL and death experience.

ASSOCIATION BETWEEN PATIENT PORTAL ACTIVITIES AND END-OF-LIFE OUTCOMES

Abstract Examining end-of-life (EOL) patient outcomes associated with patient portal use will help identify benefits and barriers of portal use during EOL care. The primary objective of this retrospective cohort study was to assess the association between EOL outcomes and patient portal use among a cohort (N=6,517) of deceased patients (18+ years old) in the last 12 months of life within Kaiser Permanente Colorado (KPCO). Outcomes including 1) number of hospitalizations in the last 30 days of life, 2) having documented advance directive before death, and 3) dying in hospice were investigated by levels of patient portal use (no use, non-active use, active use without provider, and active use with a provider) for the first six months of the last year of life. A generalized linear model with Poisson distribution, a log link and an offset to account for person-days of follow-up was used to estimate rates of hospitalizations in the last 30 days. Logistic regression was used to estimate advance directive and death in hospice outcomes. Patient portal use appeared to be associated with beneficial EOL outcomes such as advance care planning (P = 0.0226) and dying in hospice (P = 0.0070). Hospitalizations were greater with higher levels of patient portal use (P = 0.0492), suggesting that patients/caregivers may have used patient portals for disease related information and accessing health services during times of need. More research is needed to leverage patient portal use to intentionally engage, educate and guide patients with serious illness and approaching EOL.

Removing Transfusion Dependence As a Barrier to Hospice Enrollment (BRUOG-407)

Background: Patients with hematologic malignancies (HM) receive more aggressive care at the end of life (EOL) and have suboptimal hospice utilization when compared to patients with solid tumors. One reason for this is a high rate of transfusion dependence (TD). Many hospice agencies decline to provide palliative transfusions because of cost, philosophical objections, and/or logistical barriers, and as a result, many TD patients delay hospice enrollment or never enroll at all. In response to a call from ASH for novel care models to address this issue, we designed a pilot study of an open access transfusion model in hospice care. Our hypothesis was that the provision of transfusions for patients with HM on hospice would be feasible and would result in timely hospice referral and less aggressive EOL care. Methods: We conducted a single-center, prospective pilot study [NCT05063591] enrolling adults with aggressive HM who were TD and hospice-eligible. We concurrently enrolled patients' primary caregivers. Patients were evaluated weekly during a clinic visit or telephone call to assess potential symptoms related to anemia or thrombocytopenia. Relevant symptoms triggered a CBC assessment, and, if appropriate, administration of a transfusion of red blood cells (RBCs) and/or platelets. Caregivers completed the Caregiver Evaluation of Quality of EOL Care survey (CEQUEL, Higgins et al. PLoS One, 2013) ≥1 month after the patient death, to assess perception of the patient's EOL care. The primary outcome was feasibility of the care model, defined as 70% rate of successful enrollment after screening. Secondary outcomes included standard EOL care quality measures: hospice length of stay (LOS), inpatient days and ICU days in the last 30 days of life, inpatient deaths, and the use of chemotherapy in the last 14 days of life. Exploratory outcomes included caregiver's assessment of EOL care quality. Results: Of 22 patients and 9 caregivers screened, 10 patients (45%) and 8 caregivers enrolled. 4 screened patients died before consenting. The median patient age was 80 (range, 69-90). Most patients (90%) had a myeloid malignancy (AML, MDS, or CMML). The mean number of transfusions on study was 2.4 units of RBCs (range, 0-9) and 1.2 units of platelets (range, 0-10) ( Figure). The most common transfusion-triggering symptom was fatigue (N=40 transfusion events), followed by shortness of breath (N=15). The median LOS on hospice was 13 days (range, 4-103; Table). 60% of patients spent >9 days on hospice, and no patient spent ≤ 3 days on hospice. All enrolled patients died outside of the hospital: 60% at home and 40% at inpatient hospice. No patient received chemotherapy within 14 days of death, and 1 (10%) was admitted to the ICU within 30 days of death (prior to trial enrollment). There were no disenrollments due to transfusion reactions. One patient (10%) revoked hospice for hospitalization, but re-enrolled and died in inpatient hospice. When caregivers evaluated their loved one's EOL care, 100% reported that the patient experienced a peaceful death; 100% felt that medical intervention did not result in increased suffering; 86% agreed that EOL was not prolonged by medical intervention longer than they would have wished, and 86% felt that the patient suffered much less than expected. The mean CEQUEL score was 24 (range, 20-26, higher scores indicating a better perception of EOL care). Conclusion: Providing blood transfusions to patients with HM on hospice was feasible in our symptom-driven care model. The enrollment rate was short of the 70% goal, but some screened patients died before enrolling, suggesting that hospice was considered too late in the disease course, and that additional factors beyond TD may contribute to suboptimal hospice utilization among these patients. When compared with our population-based study describing EOL outcomes of patients with HM (Egan et al., Blood Adv. 2020), our current outcomes compare favorably, with longer median time on hospice (13 vs 9 days), fewer hospital deaths (0 vs 27%), and less chemotherapy at the EOL (0 vs 13%). Importantly, caregiver perception of EOL care quality was favorable. Our findings illustrate the potential of palliative blood transfusions to improve the EOL care quality for HM patients on hospice, and highlight the need for earlier hospice referral while pursuing care models that address the specific needs of this unique TD population.

The impact of hospice on end-of-life expenditures and total cost of care in episodic value-based care models at a community oncology network.

228 Background: The Institute of Medicine highlighted that multiple care transitions and fragmented care delivery at the end-of-life (EOL) is a burden to patients and caregivers. Hospice care has been shown to deliver high-quality, coordinated, and comprehensive EOL care while reducing unneeded healthcare interventions and improving EOL patient experience (preference of place of death, type of EOL care). The impact of timely hospice care on Total Cost of Care (TCOC) in episodic value-based care (VBC) models and patient experience at the EOL is largely unknown. The Oncology Care Model (OCM) was a 6-year long Medicare VBC program that encouraged care transformation at Oncology practices to drive better quality of care and patient experience, while decreasing TCOC. We studied the impact of timely hospice enrollment on TCOC, EOL expenditures, and patient experience. Methods: We obtained episode level data for patients who died in an episode (decedents) during the 6-years of the OCM (July 2016 to June 2022), for 15 practices in The US Oncology Network (The Network) participating in the OCM, along with several expenditure, clinical and episodic characteristics. We evaluated utilization and experience outcomes for episodes with and without hospice. Results: Of the 26,074 decedents during the 6-year period of the OCM, 55% were enrolled in hospice for 3 or more days (Hsp), and 45% were not enrolled or enrolled in hospice for less than 3 days (NoHsp). Mean TCOC for Hsp episodes ($41,297, n = 14,240) was significantly lower (Mann Whitney U test, p-value < 0.0001, significance level = 0.01) than NoHsp ($47,601, n = 11,834) episodes. TCOC comparison by expense cohort results are provided in Table 1. Median duration of hospice for Hsp episodes was 9 days. Mean ICU and inpatient spend in last 30 days of life in NoHsp group was more than 2 times the spend in Hsp group. 44% of patients in NoHsp group died in a hospital or an ICU setting, whereas 97% of patients in Hsp group died at home or in a hospice setting. Conclusions: Patients enrolled in hospice for 3 or more days had lower EOL care expenditures, fewer acute care interventions, and died at home or in hospice. Timely and proactive enrollment in hospice and coordinated EOL care can improve patient experience, but also reduce EOL costs for the healthcare system and patients. CMMI Disclaimer: The statements contained in this document are solely those of the authors and do not necessarily reflect the views or policies of CMS. The authors assume responsibility for the accuracy and completeness of the information contained in this document.[Table: see text]

The Effect of Simulation on Nursing Student Perceptions of Readiness to Provide End-of-Life Care.

Evidence suggests that nursing students in a prelicensure nursing program lack the required preparation to care for patients at the end of life (EOL), causing feelings of inadequacy and stress. New graduate nurses (years 0-5) struggle to address the needs of this patient population, leading to considering career changes. Nursing simulation has been shown to enhance competency and is gaining increasing favor in prelicensure nursing education. Little research has been conducted on the application of simulation using standardized patients in EOL patient scenarios. This study used live standardized patients who simulated a home health patient encounter with the nursing student acting as a home health hospice nurse. Watson's theory of caring and interpretive phenomenological analysis guided the qualitative research method and analysis. Five students chose to participate in this simulation and completed 6 reflective questions. After simulation, they felt more comfortable having difficult discussions about EOL care, treatment options, and patient fears. Participants noted the importance of communication in a team setting, which included the caregiver as an integral member. The use of standardized patient-simulated experiences increases realism and provides students the opportunity to bridge the gap between didactic education and clinical practice. This will enhance their readiness and confidence in providing EOL care.

Practice of end-of-life care for patients with advanced dementia by hospital physicians and nurses: Comparison between medical and surgical wards.

BackgroundPatients with advanced dementia are commonly hospitalized in acute care wards, yet there is limited data regarding the end-of-life (EOL) care delivered to this population. The aim of the study was to examine EOL care delivered to patients with advanced dementia hospitalized on acute wards as reported by physicians and nurses.MethodsParticipants were physicians and nurses from medical and surgical wards of two tertiary hospitals in Israel. Participants completed a self-report questionnaire evaluating EOL care experiences, knowledge, performance, assessment, communication, and perceived futile care regarding patients with dementia.ResultsThe questionnaire was completed by 315 providers. There were 190 medical ward respondents and 125 from general surgical wards. Of them, 48.6% recognized dementia as a terminal disease, while 26.0% of the participants reported that they knew the end-of-life preferences for less than 10% of their patients. Among the providers, 53.3% reported that end-of-life ward discussions took place only when there was a life-threatening situation and 11.1%–16.5% never engaged in end-of-life communication regarding EOL patient’s preferences, appointing an attorney for the patient, disease trajectory or the essence of palliative care, with patients or their representatives. Only 17.1% reported “never” performing care they considered to be futile for patients with advanced dementia. Controlling for gender, age, role, position (senior/junior), and exposure to patients with advanced dementia, surgical ward respondents reported performing less EOL care than medical ward respondents in almost all aspects of palliative care.ConclusionsDespite growing attention, a significant portion of staff in acute care wards do not report applying EOL care to patients with advanced dementia in clinical practice, especially surgical ward staff.

Death and Dying: Boundaries and Roles of Families and Healthcare Workers During Patient End of Life

This ecological momentary assessment study examined the effect of naturally occurring stressors and perceived stress reactivity on alpha-amylase, a proxy of sympathetic nervous system arousal. There are age-related changes in physiological systems sensitive to stress, so the sample included 174 adults ages 20-78 (M=48.65, SD=19.28). At the beginning of the study, participants completed the Perceived Stress Reactivity Scale (PSRS; Schulz et al., 2005). For 10 consecutive days, participants were prompted five times per day to report exposure to stressors. During the same 10-day period, participants provided seven saliva samples per day, assayed for alpha-amylase. Multilevel modeling was used to examine daily and momentary associations between stressors, the PSRS, and alpha-amylase activity. On a daily basis, stressors did not predict changes in the diurnal alpha-amylase pattern, but higher perceived stress reactivity predicted steeper diurnal slopes and lower total daily output. A significant cross-level interaction emerged showing people higher in perceived stress reactivity had steeper awakening responses on days they experienced more stressors than usual. On a momentary basis, alpha-amylase levels were higher on occasions when participants reported stressors. In addition, higher levels of perceived stress reactivity predicted lower overall alpha-amylase levels. Findings suggest that 1) stressors are associated with elevations in momentary but not daily aggregate levels of alpha-amylase, and 2) the PSRS has prospective validity as a predictor of stress-related fluctuations in diurnal alpha-amylase patterns. Age was not a significant moderator of the relationship between stressors and alpha-amylase, potentially suggesting the effect of stressors on alpha-amylase activity is age invariant.

Death and Dying: Boundaries and Roles of Families and Healthcare Workers During Patient End of Life

While death and dying often occur within or adjacent to the healthcare setting, grief & support of patients at end-of-life (EOL) remain largely within the realm of the family. Given this division of roles, healthcare workers intentionally set professional boundaries that balance their need to be empathetic and compassionate for patient and their families during EOL, while also maintaining a sense of objectivity and detachment which allows them to cope with patient loss and manage the competing demands of their workday. Tensions occur when healthcare workers are required to cross boundaries at EOL, either voluntarily or involuntarily. Using unobtrusive digital ethnography of a publicly accessible online forum for healthcare providers, this research investigates the boundaries set by families and healthcare workers at EOL, and how EOL circumstances sometimes require healthcare workers to cross or violate these professional boundaries. We suggest that the needs of the family at EOL (not necessarily the patient) serve as the catalyst for both boundary crossing & boundary violations for healthcare workers. Our data reveal that (1) boundary setting and training ought to address the patient-physician-family relationship (not just patient-physician), since the family members are such an integral part of EOL; (2) these EOL dynamics apply beyond the physician and should include all healthcare workers (nurses, etc.). As a result, patient & family centered care may not be fully achieved at EOL due to the ambiguity in the expected roles played by both families and healthcare workers during patient death and dying.

Factors Associated with Behaviors Toward End-of-life Care Among Chinese Oncology Nurses: A Cross-Sectional Study

The goal of this study was to describe the current status of oncology nurses' behaviors toward end of life (EOL) care in China and to explore the factors associated with oncology nurses' behaviors toward EOL care. A cross-sectional design was applied and a convenience sample of 1038 oncology nurses from 22 grade A hospitals were recruited into this study. A general social demographic data questionnaire was administered, and the Chinese version of Nurses' Behaviors of Caring for Dying Patients Scale was used to assess nurse behavior toward EOL care. The total score ranges from 40 to 200 points. Data were analyzed with SPSS 26.0 software. Chinese oncology nurses' average score of holistic EOL care behaviors was 2.97±0.59. Oncology nurses provide physical care most (3.81±0.76), followed by family care (3.02±0.86), and spiritual care (2.37±0.67). Multiple regression analysis showed that a higher frequency of sharing EOL care experience with colleagues, in-service palliative care education, higher level of head nurse support for EOL patient care, more cases of EOL care, higher working position, and nurse's perceived high level of support were positively associated with behavior toward EOL care. These six factors explained 16.2% of the total variance. The results may help provide a basis for converting behavior for EOL care among oncology nurses and design interventions to better improve quality of life for EOL patients with cancer in China.

Impact of the Oncology Care Model on End‐of‐Life Care

Research ObjectiveThe Oncology Care Model (OCM) is a six‐year episode‐based alternative payment model for cancer care launched by the Centers for Medicare & Medicaid Services in July 2016. OCM includes several elements intended to improve end‐of‐life (EOL) care. We evaluated the impact of OCM on EOL care intensity, spending, and oncologist and patient experiences.Study DesignUsing 100% Medicare claims (2014–2019) we employed a Difference‐in‐Differences (DID) approach comparing changes over time in care intensity and Medicare payments at the end of life, for beneficiaries served by OCM practices and by a propensity‐score matched comparison group of non‐participating practices. We also surveyed caregivers of deceased beneficiaries about patient experiences in the last month of life, and we surveyed oncologists from OCM practices about changes in palliative and EOL care. Finally, we conducted case studies with over 40 OCM practices.Population StudiedClaims‐based analyses included 256,102 Medicare beneficiaries in OCM or comparison practices who underwent chemotherapy for cancer and died during or within 90 days of their last OCM‐defined episode. Surveys were completed by family members of 5786 deceased beneficiaries (55% OCM, 45% comparison) and by 400 oncologists working in OCM practices.Principal FindingsOCM led to fewer hospitalization in the last 30 days of life for deceased OCM versus comparison beneficiaries (DID:‐11 per 1000 beneficiaries (90%CI:‐19, −4). OCM had no impact on outpatient emergency department use in the last month of life, use of infused chemotherapy in the last two weeks of life, or on hospice use, duration, or timing.The average Medicare Part A payments during the last episode for deceased beneficiaries rose $440 less in the OCM group than in comparisons, a 2.4 percent relative reduction from the OCM baseline mean of $18,530 (p ≤ 0.05). OCM had no impact on average total episode payments, or on Medicare Part B or D payments, during deceased beneficiaries' last episodes.OCM did not affect caregivers' perceptions: survey respondents rated EOL care highly before OCM began, and there were no changes over time and no differences between OCM and comparison respondents. Roughly one third of oncologists reported enhancing access to palliative care (36%) and using new/enhanced standards or guidelines to trigger discussions about EOL goals and hospice (32%). Most oncologists (55%) reported that OCM improves quality of EOL care.ConclusionsOCM led to a small relative reduction in hospitalizations during deceased beneficiaries' last month of life and a corresponding relative decrease in Medicare Part A payments. OCM had no impact on hospice use, duration, or timing. OCM had no impact on beneficiaries' care experiences at the end of life. Oncologists reported EOL process improvements attributable to OCM.Implications for Policy or PracticeOCM emphasizes shared decision making and advance care planning to ensure that cancer beneficiaries' EOL wishes are documented and followed. The first three years of OCM suggest that these efforts led to small relative reductions in hospitalizations and Part A payments in the last month of life. The lack of impact on hospice use/timing, despite clinician‐reported EOL care process improvements, suggests ongoing areas for potential improvements.Primary Funding SourceCenters for Medicare and Medicaid Services.

Care dependency of patients and residents at the end of life: A secondary data analysis of data from a cross-sectional study in hospitals and geriatric institutions.

Aims and objectivesThe holistic care dependency concept can be applied to gain comprehensive insights into individuals’ care needs in the end‐of‐life (EoL) phase. This study was carried out to measure and characterise the “care dependency” phenomenon in this phase and to obtain deeper knowledge about this phenomenon.BackgroundThe end of a human life is often characterised by a physical decline, often implying that a high amount of care is needed. Non‐malignant diseases can develop unpredictably; therefore, it is difficult to detect the onset of the EoL phase.DesignData were collected in a cross‐sectional multicentre study, using the Austrian Nursing Quality Measurement 2.0.MethodsDescriptive and multivariate statistical methods were used. Care dependency was measured with the Care Dependency Scale (CDS). The study follows the STROBE guideline.ResultsTen per cent (n = 389) of the sample (N = 3589) were allocated to “a pathway for management of patients at the end of life.” The patients and residents in the EoL phase are significantly older and more often diagnosed with dementia, and circulatory system and musculoskeletal system diseases. Of these patients, 60% were care dependent completely or to a great extent. Dementia and age represent main influencing factors that affect the degree of care dependency at the end of life.ConclusionOur results show that the “typical” EoL patient or resident is female, old and affected by dementia and/or circulatory system diseases. Dementia and age were identified as main factors that contribute to very high care dependency.Relevance to clinical practiceThe measurement of care dependency may support the identification of special care needs in the EoL phase. Gaining deeper knowledge about the care dependency phenomenon can also help healthcare staff better understand the needs of patients with non‐malignant conditions in their last phase of life.

Facilitating End-of-Life Interaction Between Patients With Severe Communication Impairment and Their Families

Purpose The purpose of this report is to promote conversation among medical speech-language pathologists (SLPs) about their role in facilitating family–patient interaction involving patients who acutely encounter the end-of-life (EOL) phase and have severe communication impairment. Case Report We provide self-reflections from our own clinical practice, pertinent literature review, and medical chart review of a relevant patient to serve as a catalyst for such discussion. Reflections We share a preliminary handout containing strategies that SLPs could provide family members of patients who have encountered an EOL phase and have severe communication impairment (e.g., global aphasia) and reduced alertness level. Clinical Implications SLPs can play an important role in facilitating EOL patient–family interaction and alleviate suffering even when patients have severe communication impairment.

THE EFFECT OF A MEDICAL DECOMPRESSION PROTOCOL ON THE USE OF ANTIEMETICS, NASOGASTRIC TUBE USAGE AND DIET ADVANCE IN LATE STAGE CANCER PATIENTS WITH FUNCTIONAL INTESTINAL OBSTRUCTION

Background: At the end of life, many cancer patients suffer from a syndrome that simulates classic small bowel obstruction. The traditional approach to intestinal obstruction is relief of pressure in the gastrointestinal tract using mechanical methods. The Medical Decompression(MD) protocol is a non-invasive pharmacologic approach for this problem that is easy and economical. Methods: The study was done in a academic institution of central India from April 2019 to October 2019. It included 21 cases based on the inclusion and exclusion criteria. Data regarding demographics, cancer diagnosis, existing drug history and diet history was collected and the sample was randomly divided into two groups: one received medical decompression and the other didn’t. The data was compared using t-tests on the outcome variable days to advanced diet. Results: Out of 21 cases, 43% were males whereas 57% were females with a mean age of 66 years. About 30% of these had a pre-inserted NG tube. Around 19% of these were already on a clear liquid diet. Most men had colon cancer whereas most females had ovarian cancer. A mean of 1.1 doses and 3.8 days was taken to advance the diet. There was a statistically significant difference between the MD and the non MD group. Conclusions: A pharmacologic method such as MD is strongly useful as first line treatments for the functional intestinal obstruction syndrome and indeed be considered as adjuncts to allow the removal of invasive mechanical interventions in the end of life patient.

Oncologic Emergencies: Palliative Care in the Emergency Department Setting.

Palliative care is an essential component of emergency medicine, as many patients with terminal illness will present to the emergency department (ED) for symptomatic management at the end of life (EOL). This narrative review evaluates palliative care in the ED, with a focus on the literature behind management of EOL symptoms, especially dyspnea and cancer-related pain. As the population ages, increasing numbers of patients present to the ED with severe EOL symptoms. An understanding of the role of palliative care in the ED is crucial to effectively communicating with these patients to determine their goals and provide medical care in line with their wishes. Beneficence, nonmaleficence, and patient autonomy are essential components of palliative care. Patients without medical decision-making capacity may have an advance directive, do not resuscitate or do not intubate order, or Portable Medical Orders for Life-Sustaining Treatment available to assist clinicians. Effective and empathetic communication with patients and families is vital to EOL care discussions. Two of the most common and distressing symptoms at the EOL are dyspnea and pain. The most effective treatment of EOL dyspnea is opioids, with literature showing little efficacy for other therapies. The most effective treatment for cancer-related pain is opioids, with expeditious pain control achievable with a rapid fentanyl titration. It is also important to address nausea, vomiting, and secretions, as these are common at the EOL. Emergency clinicians play a vital role in EOL patient care. Clear, empathetic communication and treatment of EOL symptoms are essential.

Nurses' perceptions of and barriers to the optimal end-of-life care in hospitals: A cross-sectional study.

To assess nurses' perceptions of what constitutes optimal end-of-life (EOL) care in hospital and evaluate nurses' perceived barriers to EOL care delivery. Care of dying patients is common in hospitals. However, little is known about the important elements of and barriers to optimal EOL care from key service providers' perspective, which is crucial for quality EOL care in hospital settings. This is a cross-sectional survey. Nurses practising in hospitals recruited by convenience sampling completed self-report survey questionnaires. STROBE checklist was used in study reporting. One hundred and-seventy-five nurses participated in the survey. The majority (70%) had experience in caring for dying patients. The five most highly perceived factors constituting optimal EOL care included the following: "families know and follow patient's EOL wishes"; "patients emotional concerns identified and managed well"; "patients participating in decision-making"; "EOL care documents stored well and easily accessed"; and "provide private rooms and unlimited visiting hours for families of dying patients". Top five barriers were "doctors are too busy"; "nurses are too busy"; "insufficient private room/space"; "nurses have limited training in EOL care"; and "families have unrealistic expectations of patient's prognosis." Multivariate regression analysis identified that nurses without experience in caring for dying patients reported a significantly higher number of perceived barriers towards EOL care (p=.012). Those with postgraduate degree training reported significantly fewer perceived barriers (p=.007). Findings identified essential elements for optimal hospital EOL care not only involving patients and families in EOL decision and care, but also documentation and environmental issues in the healthcare system level and the needs for strengthening manpower and expertise at palliative care policy level. This study revealed quantitative data to inform health service managers and policy makers in terms of training and service development/ re-design for EOL care in hospital settings.

Comparing Educational Outcomes of Online Module-Based Technology with and without Simulation on Attitudes Toward Care of the Dying in Second Semester BSN Students

Opportunities to provide competent and compassionate End-of Life (EOL) care to patients and families are limited for nursing students. A mixed methods approach was used to explore the students' attitudes towards caring for an EOL patient in two groups: an on-line-module only group and an on-line module plus simulation group. Statistically significant effect of time was found across the two conditions (F [1, 69] = 7.83, p = .007), indicating that scores on the FATCOD-B significantly improved regardless of the condition over time. The qualitative responses indicated that the simulation experience was more impactful than the on-line module. Innovative education modalities described in the study may assist in preparing the future workforce for the myriad of demands related to health, life, and death.

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation.

BackgroundAs older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL.ObjectiveThis study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care.MethodA descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically.ResultsSeven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes.ConclusionOur study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.

Advance Directives and Code Status Information Exchange: A Consensus Proposal for a Minimum Set of Attributes.

Documentation of code status and advance directives for end-of-life (EOL) care improves care and quality of life, decreases cost of care, and increases the likelihood of an experience desired by the patient and his/her family. However, the use of advance directives and code status remains low and only a few organizations maintain code status in electronic form. Members of the American Medical Informatics Association's Ethics Committee identified a need for a patient's EOL care wishes to be documented correctly and communicated easily through the electronic health record (EHR) using a minimum data set for the storage and exchange of code status information. After conducting an environmental scan that produced multiple resources, Ethics Committee members used multiple conference calls and a shared document to arrive at consensus on the proposed minimum data set. Ethics Committee members developed a minimum required data set with links to the HL7 C_CDA Advance Directives Module. Data categories include information on the organization obtaining the code status information, the patient, any supporting documentation, and finally the desired code status information including mandatory, optional, and conditional elements. The "minimum set of attributes" to exchange advance directive / code status data described in this manuscript enables communication of patient wishes across multiple providers and health care settings. The data elements described serve as a starting point for a dialog among informatics professionals, physicians experienced in EOL care, and EHR vendors, with the goal of developing standards for incorporating this functionality into the EHR systems.

A one hour teaching intervention can improve end-of-life care

BackgroundIt is not known if standard nursing actions are tailored to patient preferences for comfort measures during End of Life (EOL) care. ObjectivesDetermine the effect of a brief teaching intervention on student care of EOL patients. DesignPre-test/post-test intervention design. SettingsTwo large public universities and one smaller private Catholic institution (all in the United States [U.S.]). Participants471 nursing students attending class as part of their required nursing curriculum. MethodsA previously developed aggressiveness of nursing care scale was modified to determine students' behavioral intentions for the care of the EOL patient before and after a standardized lecture. The lecture was designed to help students recognize that nursing care priorities for the EOL patient may need to be different than for other patients in order to provide the best quality of remaining life. ResultsNursing students prior to the lecture had aggressiveness of care scores similar to those of experienced staff nurses, and were more likely to provide more aggressive care to younger patients without DNR orders than to older patients with a DNR order. Following the lecture, aggressiveness of nursing care scores decreased significantly for all EOL patients, and students reported similar behavioral intentions for all EOL patients, regardless of patient age or code status. Student age was marginally related to change in behavior following the lecture. Prior experience in caring for a dying patient or relative did not have a significant effect on aggressiveness of care scores before or after the lecture. ConclusionsThis study demonstrates the effectiveness of a brief teaching intervention to help student nurses take patient preferences and needs into consideration when selecting nursing interventions for the EOL patient.

Nurses challenging to terminate irrelevant treatment prior to end of life patient

Observations were done since 2008 in hospital, community concluded that end of life patients, and families did not understand how to respond to advance treatment. Besides, there were no similar standard of procedure applied into patients. There were some doctors told the families about patients' conditions and some did not. Moreover, some families understood that patients' condition could not be cured, but in dying process, the physicians suggested to be treated in an intensive care unit. In this situation, the families did not have any choice instead of to follow the physician suggestion. Indonesian's health care system that embrace doctor's domination over decision-making on patient treatment exists, although nurse has their own skills, function and knowledge that need to be incorporated in the treatment plan. On the other hand, nurses do not have initiatives to challenge this system in health care structure. This study refers to a Philosophical Carol Gilligan Theory, and Bakker & Zubair Qualitative Method of Philosophical Research. The results were divided into 2 groups: firstly were the nurses who were mostly women had their limitation to raise up their profession, and secondly, the basic nurses education was insufficient to encounter the doctors.