BACKGROUND: Preoperative advance care planning (ACP) may benefit patients undergoing major surgery.
OBJECTIVE: To evaluate feasibility, safety, and early effectiveness of video-based ACP in a surgical population.
DESIGN: Randomized controlled trial with two study arms.
SETTING: Single, academic, inner-city tertiary care hospital.
SUBJECTS: Patients undergoing major cancer surgery were recruited from nine surgical clinics. Of 106 consecutive potential participants, 103 were eligible and 92 enrolled.
INTERVENTIONS: In the intervention arm, patients viewed an ACP video developed by patients, surgeons, palliative care clinicians, and other stakeholders. In the control arm, patients viewed an informational video about the hospital's surgical program.
MEASUREMENTS: Primary Outcomes-ACP content and patient-centeredness in patient-surgeon preoperative conversation. Secondary outcomes-patient Hospital Anxiety and Depression Scale (HADS) score; patient goals of care; patient and surgeon satisfaction; video helpfulness; and medical decision maker designation.
RESULTS: Ninety-two patients (target enrollment: 90) were enrolled. The ACP video was successfully integrated with no harm noted. Patient-centeredness was unchanged (incidence rate ratio [IRR] = 1.06, confidence interval [0.87–1.3], p = 0.545), although there were more ACP discussions in the intervention arm (23% intervention vs. 10% control, p = 0.18). While slightly underpowered, study results did not signal that further enrollment would have yielded statistical significance. There were no differences in secondary outcomes other than the intervention video was more helpful (p = 0.007).
CONCLUSIONS: The ACP video was successfully integrated into surgical care without harm and was thought to be helpful, although video content did not significantly change the ACP content or patient-surgeon communication. Future studies could increase the ACP dose through modifying video content and/or who presents ACP.
TRIAL REGISTRATION: clinicaltrials.gov Identifier NCT02489799.
BACKGROUND: This study was conducted to examine whether a longitudinal advance care planning (ACP) intervention facilitates concordance between the preferred and received life-sustaining treatments (LSTs) of terminally ill patients with cancer and improves quality of life (QoL), anxiety symptoms, and depressive symptoms during the dying process.
PATIENTS AND METHODS: Of 795 terminally ill patients with cancer from a medical center in Taiwan, 460 were recruited and randomly assigned 1:1 to the experimental and control arms. The experimental arm received an interactive ACP intervention tailored to participants' readiness to engage in this process. The control arm received symptom management education. Group allocation was concealed, data collectors were blinded, and treatment fidelity was monitored. Outcome measures included 6 preferred and received LSTs, QoL, anxiety symptoms, and depressive symptoms. Intervention effectiveness was evaluated by intention-to-treat analysis.
RESULTS: Participants providing data had died through December 2017. The 2 study arms did not differ significantly in concordance between the 6 preferred and received LSTs examined (odds ratios, 0.966 [95% CI, 0.653-1.428] and 1.107 [95% CI, 0.690-1.775]). Participants who received the ACP intervention had significantly fewer anxiety symptoms (β, -0.583; 95% CI, -0.977 to -0.189; P= .004) and depressive symptoms (ß, -0.533; 95% CI, -1.036 to -0.030; P= .038) compared with those in the control arm, but QoL did not differ.
CONCLUSIONS: Our ACP intervention facilitated participants' psychological adjustment to the end-of-life (EoL) care decision-making process, but neither improved QoL nor facilitated EoL care honoring their wishes. The inability of our intervention to improve concordance may have been due to the family power to override patients' wishes in deeply Confucian doctrine-influenced societies such as Taiwan. Nevertheless, our findings reassure healthcare professionals that such an ACP intervention does not harm but improves the psychological well-being of terminally ill patients with cancer, thereby encouraging physicians to discuss EoL care preferences with patients and involve family caregivers in EoL care decision-making to eventually lead to patient value-concordant EoL cancer care.
BACKGROUND/OBJECTIVES: The Optimizing Patient Transfers, Impacting Medical Quality, Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) project is a successful, multicomponent demonstration project to reduce potentially avoidable hospitalizations of long-stay nursing facility residents. Systematic advance care planning (ACP) is a core component of the intervention, based on research suggesting ACP is associated with decreased hospitalizations of nursing facility residents. The purpose of this study was to describe associations between ACP documentation resulting from the OPTIMISTIC intervention and hospitalizations.
DESIGN: Specially trained project nurses were embedded in 19 nursing facilities and systematically engaged in ACP as part of a larger demonstration project.
PARTICIPANTS: Residents (n = 1482) enrolled in the demonstration project for a minimum of 30 days between January 1, 2015, and June 30, 2016.
MEASUREMENTS: ACP status: (1) Physician Orders for Scope of Treatment (POST) comfort measures or do not hospitalize (DNH) orders; (2) ACP orders with no hospitalization limit (eg, code status only); and (3) no ACP (potentially avoidable and all-cause hospitalizations per 1000 resident days).
RESULTS: Residents with POST comfort measures/DNH orders (33.2% or n = 493) were less likely than residents with no ACP (14.7% or n = 218) to experience a potentially avoidable hospitalization (P = .001) or all-cause hospitalization (P = .001). These differences became statistically nonsignificant after adjusting for age, functional status, and cognitive functioning.
CONCLUSION: In this successful multicomponent demonstration project to reduce potentially avoidable hospitalizations, ACP outcomes were not associated with hospitalization rates of nursing facility residents after adjusting for resident characteristics. These findings highlight the challenge of measuring the contributions of individual components of complex, multicomponent interventions. Associations between lower hospitalization rates and ACP completion may be influenced by contextual factors, such as clinical expertise and resources to manage acute conditions leading to hospitalization, in addition to interventions to increase ACP.
BACKGROUND: Patients with end-stage liver disease (ESLD) have high mortality, but low utilization of palliative care. A transitional care liver clinic (TCLC), bridging inpatient hepatology care to outpatient clinics, should offer the ideal setting for advance care planning (ACP).
OBJECTIVE: To examine ACP and related outcomes for TCLC patients who died within one year of the initial TCLC visit.
DESIGN: Retrospective chart review.
SETTING: Nontransplant eligible ESLD patients, seen in TCLC postdischarge from an inpatient liver unit.
MEASUREMENTS: Charts were reviewed for demographics, clinical data, ACP discussions, code status, location of death, and palliative care consultations.
RESULTS: Of the 58 patients who showed for the initial TCLC visit, 18 (31%) died within one year. Most patients were men (67%) with alcoholic cirrhosis (72%), Child-Pugh class C (55.5%) and median age of 56 years (37–72 years). There were no ACP discussions in any TCLC visits even after subsequent hospitalizations. Until their terminal hospitalization, 17 patients (94%) remained full code. Palliative care was consulted for 10 patients (56%). Despite late initiation, within two weeks of death for 6 of those 10 patients, palliative care consultation facilitated arrangements for out-of-hospital death: at home or inpatient hospice (70% vs. 12%, p = 0.01).
CONCLUSIONS: Despite a structured program for ESLD patients, there were no ACP discussions until the terminal hospitalization. These findings support the need to integrate palliative care interventions in the management of ESLD patients, especially taking advantage of postdischarge visits.
In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.
OBJECTIVES: To describe the impact of advance care planning (ACP) education on nurses' confidence in ACP knowledge and practice and to identify barriers to facilitate ACP conversation in a bone marrow transplantation unit.
SAMPLE & SETTING: 60 nurses working in the bone marrow transplant unit at Oregon Health and Science University, an academic medical center.
METHODS & VARIABLES: The aim of this quality improvement project was to increase ACP conversations by nurses. The authors used a single-group pre-/post-test design to assess the effectiveness of a 30-minute educational intervention in changing nurses' confidence and practice. Group interviews were conducted to identify barriers to ACP.
RESULTS: The educational intervention increased nurses' confidence in knowledge about ACP. The number of nurses who discussed ACP with patients also increased, but it was not statistically significant. Lack of time, inefficient workflow, and concerns about questioning providers' understanding of patient preferences were identified as barriers for nurses engaging in and documenting ACP conversations.
IMPLICATIONS FOR NURSING: In addition to appropriate education, strategies that help tailor ACP practice to fit into nurse workflow and promote collaboration with other healthcare team members are needed to change nurses' ACP practice.
Supportive and palliative care at the end of life (EOL) is a core component of health systems. Providing care at the EOL may require the interaction of several care providers working in different settings including nursing homes, home care, hospices, and hospitals. This work aims to (a) provide evidence on the performance of EOL care for cancer patients across healthcare organizations, with a focus on the place of care, aggressive treatments, opioids, and the place of death and (b) analyze factors associated with dying in hospital. A population-based retrospective study was performed using administrative data from Tuscany region (Italy). Thirteen thousand sixty-six cancer patients who died in 2016 were considered. There is a marked variability in EOL care within regional areas, with the multilevel logistic regression highlighting a greater likelihood of dying in hospital for patients who were admitted to intensive care units or previously hospitalized. There is a lower probability of dying in acute care setting for patients assisted in hospices and in both hospital and hospices/home care and for patients treated with opioids. This intraregional variation highlights the need to improve EOL planning and rethink the delivery of supportive/palliative care. Further investigations on the preferences of patients may lead to more understanding.
This study was conducted to enhance the rate of advance care planning (ACP) conversations and documentation in a dementia specialty practice by increasing physician knowledge, attitudes, and skills. We used a pre- and postintervention paired design for physicians and 2 independent groups for patients. The ACP dementia educational program encompassed 3 objectives: (1) to understand the relevance of ACP to the dementia specialty practice, (2) to provide a framework to discuss ACP with patients and caregivers, and (3) to discuss ways to improve ACP documentation and billing in the electronic medical record. A 10-item survey was utilized pre- and posteducational intervention to assess knowledge, attitudes, and skill. The prevalence of ACP documentation was assessed through chart review 3 months pre- and postintervention. The educational intervention was associated with increased confidence in ability to discuss ACP ( P = .033), belief that ACP improves outcomes in dementia ( P = .035), knowledge about ACP Medicare billing codes and requirements ( P = .002), and belief that they have support from other personnel to implement ACP ( P = .017). In 2 independent groups of patients with dementia, documentation rates of an advance directive increased from 13.6% to 19.7% ( P = .045) and the Medical Order for Life-Sustaining Treatment (MOLST) increased from 11.0% to 19.0% ( P = .006). The MOLST documentation in 2 independent groups of patients with nondementia increased from 7.3% to 10.7% ( P = .046). Continuing efforts to initiate educational interventions are warranted to increase the effectiveness ACP documentation and future care of persons with dementia.
BACKGROUND: In increasingly multi-ethnic societies fostering cultural awareness and integration of immigrants is not only a political duty but also an obligation for social and healthcare systems. Importantly, cultural beliefs and needs strongly impact on the quality of life of cancer patients and may become even more crucial at the end of life. However, to date, ethnic and cultural aspects of palliative care are insufficiently researched.
METHODS: This qualitative study at the Medical University of Vienna included 21 staff members from different disciplines in oncology and palliative care working with patients with various cultural backgrounds at the end of life. Semi-structured interviews were performed to gain insights into specific aspects of palliative care that are important in the clinical encounter with terminally ill cancer patients with migrant backgrounds and their relatives.
RESULTS: Interviews revealed specific aspects of palliative care, which fell into four fundamental categories and were all perceived as beneficial in the clinical encounter with migrant clients: (A) structural and (B) personal conditions of the palliative care setting, (C) specific care and treatment intentions and (D) personnel requirements and attitudes.
CONCLUSION: This study revealed first insights into possibilities and prospects of transcultural palliative care for migrants and their relatives. The results might have important implications for the end of life care in this growing population.
BACKGROUND: Advance care planning (ACP), palliative care (PC), and hospice are often underutilized by African Americans (AAs). This study assessed the impact of stage of intent to discuss ACP options as key potential barriers.
METHODS: We examined intent to discuss completion of ACP, PC, and hospice among 22 AA patients with cancer admitted to a local safety net hospital. Participants were asked about intent to discuss an advanced directive or living will (AD/LW), medical power of attorney (MPOA), PC, and hospice with their doctors. Intent to discuss these ACP components was based on the transtheoretical model. Electronic health records were reviewed at various intervals to assess completion of ACP behaviors and survival.
RESULTS: Participants had colorectal (33%), breast (44%), and lung (23%) cancer, and 82% had stage III/IV disease. Low percentages of patients were in the precontemplation stage for AD/LW completion (4.6%), MPOA completion (13.6%), and PC discussions (27.2%), but 77.2% were in the precontemplation stage for hospice discussions. At 1 year, only 5% completed an AD/LW, 36.4% appointed an MPOA, 42.9% were referred to PC, and 12.5% were referred to hospice. More than half (54.6%) were deceased by the study's conclusion. Most (81%) of these died within 6 months of their baseline study assessment.
CONCLUSIONS: Despite being hospitalized with advanced cancer and having poor prognosis, intent to discuss ACP options, PC, and hospice in this population was variable, and completion of these activities was low. This formative research is needed to develop education and counseling interventions for this high-risk, vulnerable population.
BACKGROUND: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia can benefit from palliative care (PC) provided during the end-of-life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs.
AIM: To investigate the factors influencing provision of PC services for people with advanced dementia.
METHODS: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINAHL and Scopus from 2008 to 2018 were searched. Narrative synthesis and content analysis were used to analyse and synthesise the data.
KEY FINDINGS: In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients-related barriers and facilitators in provision of PC for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to PC in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of coordination across care settings, difficulty communicating with the patient and the lack of advance care planning.
CONCLUSIONS: Even though the provision of PC was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective PC in this population.
OBJECTIVES: Mechanical ventilation (MV) has been shown to improve survival and quality of life in motor neuron disease (MND). However, during the progression of MND, there may come a point when MV is no longer felt appropriate. Association of Palliative Medicine Guidelines have been recently published to help clinicians withdraw MV at the request of patients with MND in a safe and compassionate manner to ensure that symptoms of distress and dyspnoea are minimised.
METHODS: In this report, we discuss the palliative and ventilatory management of six ventilator-dependent patients with MND who had requested the withdrawal of MV as part of their end-of-life care.
RESULTS: We have withdrawn MV from six patients with MND at their request and our practice has been influenced by the Association of Palliative Medicine Guidelines.
CONCLUSION: Withdrawal of MV in MND at a patient's request is challenging but is also a fundamental responsibility of healthcare teams. We discuss the lessons we have learnt which will influence our practice and help other teams in the future.
This literature review aimed to answer the focus question: are district nurses well placed to provide equitable end of life care (EOL) for homeless individuals? It focused on 10 primary research studies, from which two themes emerged and subsequently formed the basis of the discussion: (1) the difficulty in predicting disease trajectory in people who are homeless and (2) the gaps in existing systems. The main findings from these themes were a lack of education on the recognition of the dying and a general lack of knowledge of the complex challenges faced by and health needs of homeless people, which cause stigma from both the general public and health professionals towards these marginalised individuals. Further, there is certainly a lack of suitable places to deliver palliative and EOL care for people who are homeless. Available services are inflexible and have no tolerance for substance misuse, which creates an access barrier for homeless people in need of EOL care.
Use of an implantable cardioverter defibrillator (ICD) is an established therapy for the prevention of sudden cardiac death. However, at the end of life, these devices can prolong the dying experience, causing physical and psychological trauma. Patients are often unaware of their options regarding ICD management at the end of their life, which highlights the need for health professionals to have these discussions with patients. This study aimed to identify patients' knowledge and opinions about their ICD and the factors influencing their knowledge and opinions. Of the 30 participants in this study, 59% had sufficient knowledge about ICDs. There was no relationship between knowledge and time since implantation (p=0.11). A relationship existed between knowledge and age; those that were older were better informed (p=0.008). The authors conclude that patient education and communication are essential for patients with ICDs to enhance decision-making about ICD management at the end of life.
AIM: Identify the palliative care learning needs of healthcare students and determine the acceptability of an innovative learning strategy for palliative care named competencia para cuidar en el hogar-paliar (CUIDAR-PALIAR) aimed to increase students' competencies.
METHODS: A single-group mixed methods design was used. A questionnaire was designed and semi-structured interviews were used to determine the palliative care competencies of undergraduate students; 90 students participated in the strategy.
FINDINGS: The learning needs of students are: approaches to death and loss, how to intervene with the patient's family, understanding of the palliative care context, management of the patient's pain and symptoms and the development of therapeutic communication skills.
CONCLUSION: The strategy is highly accepted by students, and statistically significant increases in palliative care were observed before and after the intervention. These preliminary results justify future interventions due to the potential effect of the strategy CUIDAR-PALIAR in the development of competencies for palliative care in undergraduate students.
BACKGROUND: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored.
AIMS: To describe patients' perspectives of what constitutes a dignified life within a palliative care context.
METHODS: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis.
RESULTS: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'.
CONCLUSION: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.
While the particular health-care concerns of transgender people have been documented and transgender aging is an emerging area of scholarship, little is known about planning for later and end-of-life care among transgender older adults. As part of a larger project, focus groups and interviews were conducted with 24 transgender older adults (average age 70 years) living in five cities in Canada exploring their concerns and explicit plans for later life care. Three primary themes emerged: (a) "dealing with the day-to-day" reflecting economic precarity and transitioning in later life, (b) fractures and support within family and community, and (c) "there's a huge gap between principle and practice" reflecting mixed experiences and perceptions of health-care services. These themes suggest that effective promotion of care planning among older transgender persons requires an appreciation of the daily exigencies of their lives and the extent and nature of social support available to them.
Background: Location of death (LOD) is an important aspect of end-of-life (EOL) care. Adolescents and young adults (YAs) with pediatric malignancies are increasingly treated in pediatric institutions. YAs, generally defined as 18-39 years old, deserve specific attention because adults have unique developmental and social considerations compared with younger patients.
Objective: The goal of this retrospective cohort study was to understand the effect of treatment by a pediatric oncology program on EOL experiences for YAs. Specifically, we examined LOD, hospice, and palliative care (PC) involvement in a cohort of YAs who died of cancer in a large, quaternary care pediatric hospital.
Methods: This was a retrospective cohort study of patients >= 18 years of age, who died of cancer between January 1, 2010, and December 31, 2017. Standardized data were abstracted from the institutional cancer registry and the electronic medical record.
Results: YAs in this cohort more commonly died in the hospital (54.9%). Lack of hospice involvement and the presence of a documented do-not-resuscitate (DNR) order were significantly associated with inpatient death. The majority of patients had long-standing PC involvement (95.8%, median 318 days), a DNR order (78.9%), and had enrolled in hospice care (60.6%) before death.
Conclusions: These results suggest that a significant proportion of YAs with cancer remain inpatient for EOL care. Pediatric oncologists and PC teams may benefit from additional training in the unique psychosocial needs of YAs to optimize EOL care for these older patients.
OBJECTIVES: The purpose of this study was to provide a comprehensive exploration of nurses' meaningful experiences of providing end-of-life care to patients and families in the intensive care unit (ICU). The objectives of this research were: (1) To explore what is meaningful practice for nurses regarding end-of-life care; (2) To describe how nurses create a good death in the intensive care unit and (3) To identify the challenges that nurses face that affect their meaningful experiences and ultimately the creation of a good death.
RESEARCH DESIGN: This study utilised an interpretive phenomenological approach using Van Manen's (1997) method.
SETTING: In-depth, face-to-face interviews were conducted with six intensive care nurses employed in a 32-bed medical/surgical intensive care unit of an academic tertiary care centre in Canada.
FINDINGS: The overarching theme from the analysis of this experience was "being able to make a difference" which was intricately woven around contributing to a good death. Three main themes were identified and included: creating a good death, navigating the challenges and making it work.
CONCLUSION: The findings reveal how intensive care nurses provide good end-of-life care and create good deaths for patients and families.
This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse’s Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family’s dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (alpha of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.