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This paper reports the findings from a study to investigate health care professionals&rsquo, views regarding the use and acceptability of two similar paper-based advance care planning (ACP) documents designed for older adults in their last year of life to inform end-of-life care provision. Participants&rsquo, views of using PEACE (Proactive Elderly Persons Advisory Care), a nurse led model with community geriatrician oversight, and PACe (proactive anticipatory care plan), a general practitioner (GP) led model implemented by two clinical commissioning groups (CCGs) as part of a wider pilot to determine their ability to improve end-of-life care provision, were explored. Hospital admission avoidance matrons took part in face to face interviews and care staff employed in private residential care homes took part in individual telephone interviews to explore their views of using the PEACE tool. Telephone interviews were conducted with GPs to explore their views of PACe. GPs and admission avoidance matrons were employed by CCGs and all study participants were recruited from the South East of England, where data collection took place in 2015. The data were analysed thematically. Findings from the study demonstrate how both tools provide a focus to ACP discussions to inform individual end-of-life care preferences. The importance of relationships was a pivotal theme established, trusting inter-professional relationships to enable multidisciplinary teamwork and a prior relationship with the older person (or their proxy in the case of cognitive impairment) to enable such conversations in the first place. Both tools enabled participants to think critically and reflect on their own practice. Notwithstanding participants&rsquo, views to improve their layout, using a paper-based approach to deliver streamlined ACP and end-of-life care was a theme to emerge as a potential barrier, and highlighted problems with accessing paper-based documentation, accuracy and care co-ordination in the context of multidisciplinary team working. The value of technology in overcoming this barrier and underpinning ACP as a means to help simplify service provision, promote integrated professional practice and provide seamless care, was put forward as a way forward.

Only a few studies have assessed the economic outcomes of palliative care in India. The major areas of interest include hospice care, the process and structure of care, symptom management, and palliative chemotherapy compared to best supportive care. At present, there is no definite health-care system followed in India. Medical bankruptcy is common. In situations where patients bear most of the costs, medical decision-making might have significant implications on economics of health care. Game theory might help in deciphering the underlying complexities of decision-making when considered as a two person nonzero sum game. Overall, interdisciplinary communication and cooperation between health economists and palliative care team seem necessary. This will lead to enhanced understanding of the challenges faced by each other and hopefully help develop ways to create meaningful, accurate, and reliable health economic data. These results can then be used as powerful advocacy tools to convince governments to allocate more funds for the cause of palliative care. Eventually, this will save overall costs and avoid unnecessary health-care spending.

Aims: Identify strategies and resources for nurse leaders to use to lead with empathy and prudence to improve quality of care and to ease the psychological toll on nurses caring for patients with COVID‐19. Background: In a 2020 report, clinicians caring for patients during the COVID‐19 pandemic said their healthcare leaders needed to: ‘hear me, protect me, prepare me, support me, and care for me’. These words provide an action plan for nurse leaders to communicate, educate, and support nurses to practice competently and safely (physically and mentally) in the context of COVID‐19. Design: Discursive paper. Method: Identification and inclusion of relevant international evidence with clinical discussion. Findings: Nurse leaders can mobilise system and individual level strategies and resources to support nurses to manage pandemic‐related issues including: anxiety due to the risk of infection, supporting anxious children, mitigating moral injury; providing safe and quality nursing care for patients with COVID‐19 and end‐of‐life care as needed; supporting relatives who cannot be present with a dying relative, and care for grieving relatives and colleagues. We categorise a selection of evidence‐based, online sources providing current COVID‐19 information, practice updates, and resources to develop personalised self‐care plans to ease anxiety and support renewal and resilience. Conclusions: Nurse leaders must ensure adequate PPE supply, upskill nurses to provide safe, quality care for patients with COVID‐19, and promote restorative self‐care plans.Relevance to clinical practice. The strategic actions nurse leaders take today can positively impact nurses’ wellbeing and ability to provide safe and quality care for patients in the context of COVID‐19. Refereed/Peer-reviewed

Background Patient shadowing is an experiential technique intended to enable those who shadow to understand care experience from the patient's point of view. It is used in quality improvement to bring about change that focuses on what is important for patients. Aim To explore the acceptability of patient shadowing for health-care staff, the impact of the experience and subsequent motivations to make improvements. Method A qualitative study with a diverse sample of 20 clinical and non-clinical health-care staff in different end-of-life settings. Data were analysed thematically. Results Anticipated anxieties about shadowing did not materialize in participant accounts, although for some it was a deeply emotional experience, intensified by being with patients who were at the end of life. Shadowing not only impacted on participants personally, but also promoted better insights into the experience of patients, thus focusing their improvement efforts. Participants reported that patients and families who were shadowed welcomed additional caring attention. Conclusion With the right preparation and support, patient shadowing is a technique that engages and motivates health-care staff to improve patient-centred care.

Objective: To assess appropriateness of end-of-life treatments provided to actively dying patients attending the emergency department of a primary care hospital. Methods: Retrospective cohort study of patients who died in the emergency department of a French primary care hospital between January 2014 and January 2017. The deceased were identified through the admissions register. Then, electronic medical records were screened for bio-demographic data, data relative to decisions to withhold or withdraw treatments, to diagnosis and to the care provided. Patients were clustered into two categories, actively dying or non-actively dying, using clinical opinion based on their medical records. Appropriateness of care was appraised following French guidelines. Results: One hundred and forty-six deaths were recorded. Actively dying patients mostly suffered from vascular conditions (29.4%). When compared to the overall sample, they were more likely to have decisions to withhold or withdraw treatments (OR = 5.3 [1.56; 20.7], p-value = 0.003), to have strong opioids (OR = 5.32 [2.1; 13.9], p-value

Background and Objectives Performing cardiopulmonary resuscitation (CPR) on cardiac arrest patients with Do Not Resuscitate (DNR) orders does not respect patients’ autonomy. We aimed to 1) determine the frequency of patients who wished to be DNR prior to cardiac arrest; 2) determine what proportion received CPR; and 3) explain why DNR patients received CPR. Methods This was a retrospective chart review study of cardiac arrest patients at an emergency department. We reported the frequency and proportion of patients who 1) had valid DNR orders presented at the time of cardiac arrest; 2) had valid DNR orders that were unavailable at the time of arrest 3) had Advanced Directives but no DNR orders; 4) had their DNR orders rescinded; and 5) wished to be DNR but did not have any documents in place. Results Of 419 patients, 65 (15.51%) wished to be DNR. Out of these 65 patients, 38 (58.46 %) patients were resuscitated. Among the 38 patients, 23 (60.52%) received CPR accordingly and 15 (39.47%) patients were inappropriately resuscitated. Conclusion In our sample of 419 patients, 65 (15.51%) did not want CPR in the event of cardiac arrest and 38 (9.06%) received CPR against their wishes. This was due to failure to document DNR orders, lack of recognition of documented valid DNR orders, and use of non-actionable Advanced Directives to relay patients’ wishes.

Background end-of-life care is not always in line with end-of-life preferences, so patients do not always die at their preferred place of death (PPD). This study aims to identify factors associated with patients’ PPD and changes in PPD. Methods we prospectively collected data on PPD at four time points within 6 months from 230 acutely hospitalised older patients who were part of the control group in a stepped-wedge randomised controlled trial. Associations between patient characteristics and preferences were calculated using multivariable (multinomial) logistic regression analysis. Results the mean age of participants was 80.7 years. 47.8% of the patients had no PPD at hospital admission. Patients previously admitted to hospital preferred to die at home (home versus no preference: odds ratio [OR] 2.38, 95% confidence interval [CI] 1.15–4.92; home versus healthcare facility: OR 3.25, 95% CI 1.15–9.16). Patients with more chronic diseases preferred the healthcare facility as their PPD (healthcare facility versus no preference: OR 1.33, 95% CI 1.09–1.61; healthcare facility versus home: OR 1.21, 95% CI 1.00–1.47). 32 of 65 patients changed their preference during follow-up, and most of these had no PPD at hospital admission (home versus no preference: OR 0.005, 95% CI ≤0.001–0.095) and poorer self-rated well-being (OR 1.82, 95% CI 1.07–3.08). Conclusions almost half of the patients had no PPD at baseline. Previous hospital admission, having more chronic diseases and living alone are associated with having a PPD. Introducing PPD could make older people aware of PPD and facilitate optimal palliative care.

Background People with learning disabilities have poorer health than the general population and experience health inequalities in a number of different ways (JSNA Briefing on Learning Disabilities. Worcestershire County Council, 2018). LeDeR (The Learning Disabilities Mortality Review, 2018) suggest a disparity in the age of death for people with learning disabilities and the general population to be 23 years for males and 27 years for females. Aims Ensure hospice care is seen as an option for people with a learning disability at the end of life with increased external awareness, improved access, internal education and supporting conversations in the community about death and end of life with people with a learning disability. Methods St Richard’s Hospice made three pledges in the SpeakEasy NOW White Paper on Growing Older and End of Life. As a result we have started an internal learning disability working group and work in partnership with SpeakEasy NOW to improve knowledge and access to end of life care for people with learning disabilities. Results In partnership with SpeakEasy NOW: Created a bespoke easy–read hospice leaflet which has been peer reviewed by people with a learning disability; Filmed a video with people with learning disabilities on why and how to talk to loved ones about end of life wishes; Hosted a free event on growing older and end of life for people with a learning disability and their carers involving information stalls and interactive workshops; Exploring learning disability champions in hospice clinical teams; Exploring hosting conversation events across the county about end of life with people with learning disabilities. Conclusion St Richard’s Hospice is committed to ensuring everyone who has a specialist palliative care need has access to appropriate support. In partnership with SpeakEasy NOW, we are improving access, awareness and conversations about death and dying with people with a learning disability and their loved ones.

This descriptive qualitative study was planned to determine the views of intern nursing students about death and end-of-life care. The study was completed with 12 intern students based on the criterion of data saturation. As a result of the study, the categories of 'end,' 'uncertainty,' 'fear,' 'beginning,' 'helplessness' under the theme of death, 'ensuring peace,' 'continuing communication' 'providing psychosocial/spiritual support,' 'acting in conformity with principles of ethics/morality,' 'continuing to provide physical care,' 'supporting the family,' 'making the best use of the limited remaining time or helping the patient's last wishes come true' under the theme of end-of-life care emerged.

Background In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important. Objective We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach. Methods Family conferences comprised three phases designed according to telehealth implementation guidelines—the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: “team talk,” “option talk,” and “decision talk.” The model has been implemented at a national cancer treatment center in Taiwan since February 2020. Results From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients’ mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%). Conclusions Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.

To evaluate the feasibility of a structured nurse-led supportive intervention and its effects on family caregivers in end-of-life care at home.Family caregivers are crucial in end-of-life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers' burden and improve preparedness. However, few nurse-led interventions are available to support family caregivers in end-of-life care at home.We will perform a cluster randomized controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group.The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self-Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019.Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end-of-life care.The Netherlands Trial Register (NL7702).目的: 评价由护士主导的结构化支持性干预的可行性及其对家庭照护人员在家庭临终关怀中的影响。 背景: 家庭照护人员在临终关怀中发挥至关重要的作用。他们可能会因照护相关责任而承受压力。一些家庭照护人员觉得自己未就承担照护人员角色做好充分准备。护士具有独特的地位,可在家里提供支持性的干预措施,以减轻照护人员的负担,使其做好准备。然而,很少有护士主导的干预措施可用于支持家庭照护人员在家中提供临终关怀。 设计: 本研究采用群组随机对照试验。该群组由12名家庭照护服务人员组成,随机分为干预组或对照组两组。 方法: 研究人群由负责患者生命最后阶段的家庭照护人员组成。在干预组中,护士将使用评估工具和临床推理方法,对家庭照护人员的支持性需求展开系统地评估。对照组中的家庭成员照常接受照护。主要结果为按照负担自评量表所衡量的负担情况。次要结果为照护准备程度,照护反应和因急性疾病(住院)入院的病人。此外,还将对干预的可行性进行评估。该研究于2016年10月获得资助,并于2019年4月获得伦理批准。 影响: 本研究的结果将有助于发展护理干预的科学和实践知识,以支持家庭照护人员进行临终关怀。 试验注册: 荷兰试验注册库(NL7702)。.

Introduction: Advanced care planning (ACP) is a voluntary process of discussion about future care between an individual and their care provider. ACP is a key focus of national policy as a means to improve patient centered care at the end-of-life. Despite wide held belief that ACP is beneficial, uptake is sporadic with considerable variation depending on age, ethnicity, location and disease group. Methods: This study looked to establish the prevalence of ACP on initial presentation to hospital with a medical emergency within The Society of Acute Medicine Benchmarking Audit (SAMBA'18). 123 acute hospitals from across the UK collected data during a day of care survey. The presence of ACP and the presence of 'Do Not Attempt Cardiopulmonary Resuscitation' orders were recorded separately. Results: Among 6072 patients presenting with an acute medical emergency, 290 patients (4.8%) had an ACP that was available for the admitting medical team. The prevalence of ACP was higher at 12.6% for patients over 90 years old. Comparing the effect of location for older patients showed that for patients over 90 years old, 25.3% of patients in institutional care had ACP whereas 8.7% of patients admitted from home had ACP. However, in patients above the age of 90 who were being re-admitted after a hospital admission within the previous 30 days, just 15.3% had evidence of ACP. Conclusion: Very few patients have an ACP that is available to admitting medical teams during an unscheduled hospital admission. Even among patients with advanced age, and who have recently been in hospital, the prevalence of available ACP remains low, in spite of national guidance. Further interventions are needed to ensure that patients' wishes for care are known by providers of acute medical care. Funding Statement: The authors stated that: This study was unfunded." Declaration of Interests: No conflicts of interest declared by the authors. Ethics Approval Statement: The authors declared that ethics committee approval was not required for this study.

Aim of the study The McGill Quality of Life Questionnaire has been widely used for people with life-threatening illnesses since 1996. In 2016 Cohen et al. revised the McGill Quality of Life Questionnaire and improved its psychometric properties and length. The aim of the present study was to adapt the McGill Quality of Life Questionnaire – Revised (MQOL-R) into Polish. The study assessed the factorial structure, reliability, and validity of the Polish adaptation of the MQOL-R. Material and methods The study had a non-randomised, cross-sectional design. The Polish translation of the MQOL-R was administered to 140 people with life-threatening illnesses. Patients were recruited from acute and palliative care units. Data were analysed using confirmatory factor analysis, and correlational and multiple regression analyses. Results The results provide support for the measurement structure of the Polish adaptation of the MQOL-R. Both the overall scale and four subscales have satisfactory internal consistency and the construct and concurrent validity. Conclusions The Polish MQOL-R is psychometrically sound and may serve as a valuable asset in research on quality of life of people with life-threatening illnesses.

It is interesting to read Bowers et al ’s article1 as it confirms general practice response in the UK is quite variable as regards end-of-life care. Over a decade ago, the Department of Health published its white paper on End of Life Care Strategy ;2 in it, …

Nurses' knowledge regarding advance directives may affect their administration and completion in end-of-life care. Confidence among nurses is a barrier to the provision of quality end-of-life care. This study investigated nurses' knowledge of advance directives and perceived confidence in end-of-life care, in Hong Kong, Ireland, Israel, Italy and the USA using a cross-sectional descriptive design (n = 1089). In all countries, older nurses and those who had more professional experience felt more confident managing patients' symptoms at end-of-life and more comfortable stopping preventive medications at end-of-life. Nurses in the USA reported that they have more knowledge and experience of advance directives compared with other countries. In addition, they reported the highest levels of confidence and comfort in dealing with end-of-life care. Although legislation for advance directives does not yet exist in Ireland, nurses reported high levels of confidence in end-of-life care.

Over 5 million Americans have dementia, and the majority will die in nursing home (NHs). While comfort is the main goal of care for most NH residents with advanced dementia, they commonly receive burdensome and costly interventions such as hospital transfers and feeding tubes that are of little clinical benefit. Despite 20 years of research and numerous experts and associations advocating a palliative approach to care, quantitative studies continue to demonstrate striking and persistent regional, facility, and racial differences, including: greater intensity care among African American versus White residents; greater intensity of care in the Southeastern US; and wide variation in care among NHs in the same region of the country. The reasons for these differences are poorly understood. Assessment of Disparities and Variation for Alzheimer’s disease in Nursing home Care at End of life (ADVANCE) is a 3-year, NIA funded qualitative study of 16 NHs in 4 regions of the country which aims to explain regional and racial factors influencing feeding tube and hospital transfer rates. The purpose of this presentation is to present the methodology established in this study and to highlight factors challenging and enabling implementation of the study protocol. To date, data have been collected in 11 NHs, and include 135 staff interviews, 40 proxy interviews, and nearly 800 hours of observation. These findings demonstrate that although challenging, large qualitative research is possible and holds promise as an effective method to illuminate complex processes influencing end-of-life care for NH residents with advanced dementia.

// Huei-Kai Huang 1 , Jyh-Gang Hsieh 1, 2 , Chia-Jung Hsieh 3 and Ying-Wei Wang 1, 2 1 Department of Family Medicine, Buddhist Tzu Chi General Hospital, Hualien, Taiwan 2 School of Medicine, Tzu Chi University, Hualien, Taiwan 3 Department of Public Health, Tzu Chi University, Hualien, Taiwan Correspondence to: Ying-Wei Wang, email: drywwang@gmail.com Keywords: cancer, dementia, palliative care, terminal care, end-of-life care Received: January 28, 2017 Accepted: June 02, 2017 Published: June 29, 2017 ABSTRACT Dementia is a progressive, incurable disease that can deprive patients of the ability to make decisions. This study determines whether dementia influences the medical care that a cancer patient receives at the end of life. We conducted a nationwide population-based cohort study on patients aged ≥20 with newly diagnosed cancer during 2000–2012. After matching to reduce confounders, there were 7,111 patients with and 28,444 without dementia. The adjusted odd ratios (OR) for medical interventions, including intensive care, palliative care, invasive procedures, and advanced diagnostic testing, were calculated for the final month and three months of life by a multiple logistic regression model. In the final month before death, the dementia cohort had longer hospital stays (17.7 vs. 17.1 days), more intensive care unit stays (OR = 1.32), and less palliative care (OR = 0.80) than the non-dementia cohort and were more likely to receive invasive procedures, including cardiopulmonary resuscitation (OR = 1.32), endotracheal intubation (OR = 1.27), mechanical ventilation (OR = 1.45), urinary catheterization (OR = 1.24), and feeding tube (OR = 1.88), but less likely to undergo chemotherapy (OR = 0.60) and diagnostic procedures such as computed tomography, magnetic resonance imaging, and sonography (OR = 0.87) or bone scan (OR = 0.69). The analysis examining the three months before death had similar results. In summary, patients with cancer and dementia are more likely to receive intensive care and invasive procedures but less likely to undergo advanced diagnostic testing, chemotherapy, or hospice care than those with cancer but without dementia.

An emerging conceptual framework on the relationship between serious and sensitive end-of-life (EOL) discussions and patient hope points to the mediating role that patient readiness may play. Additional research has also found that among some patients, engaging in and EOL conversation before they are ready may actually cause harm. Presently, health practitioners do not have a way to measure patient readiness. Therefore, the purpose of this study was to develop a survey assessment tool, rooted in research, to measure patient readiness to engage in an EOL discussion. The 16-item survey was initially developed by a gerontological researcher and clinical oncologist, and tested for face reliability and appropriateness among a geriatrician and three patients with chronic illness. In May 2018, the final version of the survey was pilot tested among 168 patients attending their regularly scheduled oncology appointment. On average, most participants identified as Caucasian (74%) females (61%) in partnerships (58%) and having a cancer diagnosis (64%). Bivariate analyses revealed that older age (60+, p=0.008), Caucasian race (p=0.04), and reported greater knowledge of community and supportive services (p=0.049) was significantly associated with increased readiness to engage in an EOL discussion. Additionally, a higher score on the Advance Care Planning Engagement Survey was significantly associated with increased readiness (p

The Vulnerable Elders Survey-13-Health Outcomes Survey (VES-13-HOS) 2.5 is a simple, validated method to predict two-year mortality using older adults’ responses to the Medicare HOS. We explore whether adding longitudinal function measures and expanded sociodemographic information significantly improves the performance of the VES-13-HOS 2.5. Using Medicare HOS data, we developed risk scores that used coefficients from three logistic regressions predicting two-year mortality (2013-2015): (1) standard 0-10 VES-HOS 2.5 inputs at 2013 (function and limited demographics), (2) expanded demographics at 2013 (adding gender, fine-grained age, race/ethnicity, marital status, missing income indicator, and Medicaid status), (3) expanded demographics at 2013 plus change in pre-baseline (2011) health score two years prior. Fine-grained age and sociodemographic information slightly improve VES mortality prediction. Holding the 2013 VES-HOS 2.5 0-18 enhanced-demographic risk score constant, seniors with worse 2011 than 2013 functioning had higher two-year mortality than seniors with better 2011 functioning. Adding this prior health status further improved model performance slightly- 80% of mortality prediction is explained by “current” health and function and 20% by status two years earlier; such weighted scoring could be employed. We find that prior health status measurements do not generally indicate a trajectory that is likely to continue. Rather, health and function information from two years prior reduces measurement error via a second assessment of health; those with much worse health and function two years earlier are at slightly higher mortality risk. The VES-HOS can be used to identify patients with high mortality risk and to guide their care.

Although advance care planning (ACP) can lead to more patient-centered care, the communication around it can be challenging in acute care hospitals, where saving a life or shortening hospitalization is important priorities. Our qualitative study in an acute care hospital in Japan revealed when specifically physicians and nurses start communication to facilitate ACP. Seven physicians and 19 nurses responded to an interview request, explaining when ACP communication was initiated with 32 patients aged 65 or older. Our qualitative approach employed descriptive analysis to identify major themes, which included “initiation by patients” and “initiation by healthcare professionals.” In the latter case, seven specific triggers were identified: (1) when the patients’ medical condition changed in terms of symptom relief, (2) when the patients’ medical condition changed in terms of prognostic prediction, (3) when serious events occurred, (4) when a choice of treatment was presented, (5) when the location for end-of-life care was chosen, (6) when the patients’ cognitive function deteriorated, and (7) when serious events settled down. Within this group of healthcare professionals, physicians were more focused on changes in their patients’ medical condition, whereas nurses focused more on their patients’ desire for a long-term perspective. Nurses encouraged patients to consider ACP themselves, which developed into an approach to respect patients’ autonomy. In acute care hospitals, it appeared to be desirable to have an early discussion where patients could understand the significance ACP, which would matter even after their discharge from the hospital.

Conventional prognostic scores for terminally ill cancer patients may have less objectivity because they include subjective or categorical variables that do not consider intensity or severity. The aim of this study was to identify prognostic factors for 30-day mortality from routine blood examination of terminally ill cancer patients. A total of 1308 study patients in a hospice setting were divided into investigation (n=761) and validation (n=547) groups. Twenty laboratory blood parameters were analyzed. Multivariate analysis revealed that ten variables (C-reactive protein ≥5.4 mg/dL, serum albumin

Family involvement is critical to end-of-life (EOL) care of older adults. Attitude toward family involvement in EOL care can be influenced by family relationship. Yet, mechanisms explaining such influence have not been examined among older Chinese Americans. This study aims to examine the association between family relationship and older Chinese Americans’ attitude toward family involvement in EOL care and explore pathways of this association. Potential mediators include self-efficacy, perceived benefits, and perceived barriers of discussing EOL care with family members. Data were collected from 276 Chinese Americans aged 55+ in two metropolitan areas in 2018. Participants’ average age was 74 years (SD=9.6). Approximately 64% of the sample were female. Most participants (57%) held positive attitudes toward family involvement in EOL care. Using the Structural Equation Modeling method, we found that family relationship had a significant positive total effect on positive attitude toward family involvement in EOL care (z=5.57, p

This white paper, prepared by a working group of the Catholic Medical Association, provides a commentary on a new type of end-of-life document called a POLST form (Physician Orders for Life-Sustaining Treatment) as well as on its model (or “paradigm”) for implementation across the United States. After an introductory section reviewing the origin, goals, and standard defenses of the POLST paradigm and form, the paper offers a critical analysis of POLST, including an analysis of the risks that POLST poses to sound clinical and ethical decision-making. The paper ends with several recommendations to help Catholic healthcare professionals and institutions better address the challenges of end-of-life care with alternatives to POLST.

Background The recently published End of Life Care Strategy1 and emerging service improvements have raised the profile of end of life care (EOLC) across health and social care sectors. Policy emphasises providing patients with more choice over where they are cared for at the end of life. Surveys and anecdotal evidence suggest that the majority of people would prefer to be cared for (and die) in their own home. Such care provision evidently requires considered planning across community providers. Some areas have instigated a centralised administrative process for such care planning. Setting This shift towards centralising the administrative function of care coordination for patients who are nearing the end of life has implications for community care providers. Question This paper seeks to understand the impact that centralising EOLC care coordination in the community has had on community providers. Methods This paper draws on findings from case studies of two large primary care trust (PCT) regions in England. One hundred and two semi-structured interviews with service managers, commissioners and providers were conducted across the two case studies, as well as two focus groups (ten participants – acute and community nurses), observation of key local palliative care planning meetings, and documentary analysis of strategic and operational papers. Results The findings presented demonstrate that a centralised approach to care planning has positive outcomes for community nurses, who are able to spend more time delivering direct patient care. However, there were challenges associated with the approach – particularly the capacity of an administrative process to intelligently allocate finite resources amongst patients with a range of care needs. Conclusions The centralisation of care planning had implications for how community nurses conceptualised their role in the delivery and coordination of EOLC. Community nurses were positive regarding the alleviation of the administrative burden; however the approach challenged their professional role as key worker – particularly in making judgements as to the nature and appropriateness of patient care packages.

Background: There is a significant geographical disparity in place of death. Socio-demographic and disease-related variables only explain less than a quarter of the variation. Healthcare service factors may account for some (or much) of the remaining variation but their effects have never been systematically evaluated, partly due to the lack of a conceptual framework. This study aims to propose a population-based framework to guide the evaluation of the role of the healthcare service factors in place of death. Methods: Review and synthesis of health service models that include the impact of a service component on either place of death/end of life care outcomes or service access/utilization. Results: The framework conceptualizes the impact of healthcare services on the place of death as starting from the end of life care policies that in turn influence service commissioning and shape healthcare service characteristics, including service type, service capacity—facilities, service location, and workforce, through which service utilization and ultimately place of death are affected. Patient socio-demographics, disease-related variables, family and community support and social care also influence place of death, but they are not the focus of this framework and therefore are grouped as needs and other environmental factors. Information on service utilization, together with the place of death, creates loop feedback to inform policy and service commission. Conclusions: The framework provides guidance for analysis aiming to understand the role of healthcare services in place of death. It aids the interpretation of results in the light of existing knowledge and potentially identifies service factors that can be addressed to improve end of life care.

Compared to whites, racial/ethnic minorities are less likely to enroll in hospice and if they enroll, more likely to experience poor quality care. Building cultural competence (CC) among hospice staff is a strategy that may reduce these disparities. We conducted a national survey of hospices’ practices to promote CC. A total of 197 hospices participated; most were not-for-profit (80%) with an average daily census over 100 (53%); 73% offered staff cultural competence training (CCT). There were no differences in characteristics of hospices who offered CCT and those that did not. Of hospices offering CCT, 54% held it annually. Most trainings were one hour (60%); content was delivered via web (58%) and/or lecture (57%). While over 90% of staff (i.e., nurses, social workers, and chaplains) completed CCT, a smaller proportion of medical directors (63%), senior leaders (70%) and board members (23%) did so. Most common (>70%) topics were: cross-cultural communication, death and illness beliefs, and spirituality’s role, and healthcare disparities. The majority focused on African-Americans (83%), Hispanics (76%), and Asians (61%)—the most common U.S. minority groups. Almost 30% reported no assessment of effectiveness of CCT while 45% reported a quiz at the end. In this study, most hospices offered some CCT. CCT has been shown to improve healthcare providers’ knowledge and skills in caring for diverse patients and is associated with increased patient satisfaction. Future research should evaluate effectiveness of CCT in improving the ability of hospices to deliver high quality end-of-life care to diverse groups of older adults.

Nursing homes (NH) must implement best practices to improve care. The purpose of this study is to understand NH characteristics that help or hinder implementation of the Goals of Care (GOC) intervention, an evidence-based decision aid to guide decision-making in advanced dementia. Study design was a cross-sectional staff survey at 11 NHs in North Carolina that participated in the GOC trial. Questions measured the dependent variable of implementation effectiveness (IE) (the consistency and quality of use of the GOC intervention). NH organizational characteristics were measured using publicly available data and administrator surveys. Averages were obtained, IE and NH factors above the average were ranked as high and vice versa. Analysis consisted of pattern matching logic, predicted results are compared to actual results, using within-case and cross-case analyses. NHs with high IE were expected to have the majority (five or more) of NH characteristics to be high to confirm the within (within-case analysis) and between (cross-case analysis) relationships. Within-case analysis expected results were met in 5 NHs, with 3 highs (IE high and five or more characteristics were high) and 2 lows (IE low and five or more characteristics were low). Among three NHs with high IE, the following characteristics were high: Medicare and SNF/ICF beds. Across 6 of the 11 NHs, high total beds and percent of White residents were related to high IE. NHs with enhanced resources may have fewer challenges implementing innovations compared to resource constrained NHs. Implementation strategies should account for resource limitations to promote successful implementation.

The Medicare Hospice Benefit’s General Inpatient (GIP) level of care provides short-term services for pain and symptom management in an inpatient facility that cannot be managed in the patient’s home. Relatively little is known about how beneficiaries utilize services during GIP care. Among a cohort of Medicare hospice beneficiaries utilizing GIP during Federal Fiscal Year 2014 (FY2014), we used 100% Medicare hospice and Part B claims to identify physician and nurse practitioner services concurrent with GIP dates. We estimated logistic regression models to determine the likelihood a beneficiary never receives physician or nurse practitioner services. We found that among the 1.5 million GIP days serviced in FY2014, more than half (52.4%) lacked any recorded physician or nurse practitioner services. Absence rates for these services were particularly high among hospice GIP days provided in inpatient facilities (69.1% missing services), long-term care hospitals (84.3% missing services), and skilled nursing facilities (85.3% missing services). Moreover, one in five hospice episodes having at least three sequential GIP days lacked any physician or nurse practitioner services. Relative to hospice inpatient units, rates of absence were higher among episodes beginning in long-term care hospitals [59.3% long-term care hospital vs. 11.5% hospice inpatient units; AOR 9.65 95% CI 7.47-12.46] and skilled nursing facilities [51.3% skilled nursing facility vs. 11.5% hospice inpatient units; AOR 5.98, 95% CI 5.63-6.36]. More in depth research and monitoring is needed to further understand dimensions of GIP care provision, to ensure that hospice beneficiaries are receiving adequate services regardless of their inpatient setting.

// Jessica I. Hoell 1 , Jens Warfsmann 1 , Stefan Balzer 1 , Arndt Borkhardt 1 , Gisela Janssen 1, * and Michaela Kuhlen 1, * 1 Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, Medical Faculty, Heinrich Heine University of Dusseldorf, Dusseldorf, Germany * These authors have contributed equally to this work Correspondence to: Michaela Kuhlen, email: michaela.kuhlen@med.uni-duesseldorf.de Keywords: palliative care, children, pediatric, home care, hematologic malignancies Received: June 02, 2017 Accepted: August 17, 2017 Published: September 23, 2017 ABSTRACT Introduction: Hematologic malignancies (HM) represent the most common neoplasms in childhood. Despite improved overall survival rates, they are still a major contributor to cancer death in children. Aims: To determine the proportion of children with HM in pediatric palliative care (PPC) and to identify the clinical characteristics and symptoms in comparison to children with extracranial solid tumors (non HM patients). Patients and Methods: This study was conducted as a single-center retrospective cohort study of patients in the care of a large specialized PPC team. Results: Fifteen HM and 50 non HM patients were included. Symptoms in which HM patients scored significantly higher than non HM patients were mucositis, difficulty moving, somnolence, fatigue, petechiae and paleness. Blood transfusions were more frequently administered to HM patients, but large external hemorrhage was not observed in any child. A large variety of drugs and appliances were needed by the patients, with morphine being the most frequently prescribed drug. During the study period, a much larger and over the years even increasing number of HM patients (not in the care of the PPC team) died in hospital with an (assumed) curative intent, with two thirds dying in the ICU. Conclusions: Children with HM were referred to outpatient PPC with almost the full clinical picture of advanced leukemia. Noteworthy, the number of children with HM dying at home is decreasing in our center, instead a substantial proportion received high-intensity medical hospital care including novel anticancer therapies. These patients thus seem to be at an increased risk of dying in hospital as the right time to transfer them to palliative care is oftentimes missed.

Purpose: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. Evidence: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. Recommendations: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policy Providing a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom control Palliative care and EOLC to be part of all hospital and community/home based programs Standards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodies All health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education.

OBJECTIVE: To determine the decision-making process of withholding and/or withdrawal (WH/WD) of life-sustaining treatment in cardiac intensive care units (ICUs) in Germany. METHODS: A questionnaire regarding 16 medical and 6 ethical questions of WH/WD of life-sustaining treatment was distributed to the clinical director, senior ICU physician and head nurses of all German heart surgery centres (n= 237 questionnaires). Furthermore, we present a literature survey using the key words ‘End-of-life care AND withholding/withdrawal of life support therapy AND intensive care unit’. RESULTS: We received replies from 86 of 237 (36.3%) contacted persons. Concerning medical reasons, cranial computed tomography (CCT) with poor prognosis (91.9%), multi-organ failure (70.9%) and failure of assist device therapy (69.8%) were the three most frequently cited medical reasons for WH/WD life-sustaining treatment. Overall, 32.6% of persons answered that ethical aspects influence their decision-making processes. Poor expected quality of life (48.8%), the patient’s willingness to limit medical care (40.7%) and the families’ choice (27.9%) were the top three reported ethical reasons. There was a significant difference regarding the perception of the three involved professional groups concerning the decision-making parameters: multi-organ failure (P= 0.018), failure of assist device therapy (P= 0.001), cardiac index (P= 0.009), poor expected quality of life (P= 0.009), the patient’s willingness to limit medical care (P= 0.002), intraoperative course (P= 0.054), opinion of family members (P= 0.032) and whether decision-making process are done collaboratively (clinical director, 45.7%; ICU physician, 52%; and head of nursing staff, 26.9%). Palliation medication in patients after WH/WD of lifesupport consisted of morphine (92%) and benzodiazepines (88%). CONCLUSIONS: This survey is a step towards creating standards of end-of-life care in cardiac ICUs, which may contribute to build consensus and avoid conflicts among caregivers, patients and families at each step of the decision-making process.

Purpose Despite the positive influence of spiritual coping on the acceptance of a cancer diagnosis, higher spirituality is associated with receipt of more high intensity care at the end of life. The purpose of our study was to assess the association between spirituality and type of end-of-life care received by disadvantaged men with prostate cancer. Methods We studied low-income, uninsured men in IMPACT, a state-funded public assistance program, who had died since its inception in 2001. Of the 60 men who died, we included the 35 who completed a spirituality questionnaire at program enrollment. We abstracted sociodemographic and clinical information as well as treatment within IMPACT, including zolendroic acid, chemotherapy, hospice use, and palliative radiation therapy. We measured spirituality with the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being questionnaire (FACIT-Sp) and compared end-of-life care received between subjects with low and high FACIT-Sp scores using chi-squared analyses. Results A higher proportion of men with high (33%) versus low (13%) spirituality scores enrolled in hospice, although our analysis was not adequately powered to demonstrate statistical significance. Likewise, we saw a trend toward increased receipt of palliative radiation among those with higher spirituality (37% vs. 25%, P = 0.69). The differences in end-of-life care received among those with low and high spirituality varied little by the FACIT-Sp peace and faith subscales. Conclusions End-of-life care was similar between men with lower and higher spirituality. Men with higher spirituality trended toward greater hospice use, suggesting that they redirected the focus of their care from curative to palliative goals.

Background Research shows most people want to die at home yet most in fact die in hospital. The underlying reason for this mismatch is that health and social care services struggle to respond satisfactorily to people's varying end of life care needs. The creation of the National End of Life Care Programme in 2004(1) and the launch of the End of Life Care Strategy in 2008(2) were designed to improve this situation. Setting The National End of Life Care Programme was set up to offer patients nearing the end of their life high quality care and choices about where to die. Particular objectives were reducing the number of unnecessary emergency admissions and improving the skills of the workforce. Question How effective has the National End of Life Care Programme been in its first three years? And given that an increasing proportion of end of life care services will take place in the community, what are the implications for primary care staff? Methods The authors discuss an in-depth evaluation of the National End of Life Care Programme by Nottingham University.(3) They also describe two Department of Health reports indicating how primary care services can improve the quality of end of life care services.(4,5) Results The Nottingham University evaluation shows that the National End of Life Care Programme is having an impact. SHAs with high uptake of end of life care tools tend to have higher rates of home deaths. In addition staff who use the tools are more confident in broaching sensitive issues around dying. Meanwhile the DH reports provide a template for coordination of services and training of staff in the community. Conclusion There are examples around the country of excellent end of life care. But it is essential that the best is spread to the rest. That success depends on better organisation and collaboration, effective use of resources and good communication between commissioners and providers. Above all, care has to be focused on the individuals and their carers.