Palliative Care Guidelines Research Articles

Cardiologist and Hospitalist Decision-Making in Palliative Care Referral for Hospitalized Patients with Heart Failure: A Multi-Institutional Survey (GP700)

•Identify several subjective and system-level factors that are influential in hospitalist and cardiologist decision-making regarding the timing and appropriateness of palliative care referral in hospitalized advanced heart failure patients.•Recognize the low uptake of guidelines among hospitalists and cardiologists regarding palliative care delivery to heart failure patients and be able to name opportunities to improve awareness of these guidelines. Despite frequent hospitalizations, end-stage heart failure patients rarely receive palliative care during admissions. To evaluate factors influencing provider decisions about palliative care referral in hospitalized heart failure patients. We conducted a multi-institutional, randomized, vignette-based survey of cardiologists and hospitalists. Participants reported their likelihood of referring a standardized patient with an acute heart failure exacerbation with multiple prior hospital admissions and acute renal failure to palliative care (scale of 0-100%) after the initial stem and again after being cued with three randomized vignette modifiers, including (a) presence versus absence of continuity with an outpatient cardiologist; (b) presence versus absence of documented advance care planning in the medical record; and (c) the patient voicing that he is accepting of his severe illness versus wanting everything done. Adjusted generalized linear models and predictive margins were used to evaluate the impact of each randomized modifier on likelihood of palliative care referral. Response rate was 28.2% (n=188). The mean likelihood of referring the heart failure patient described in the initial vignette to palliative care was similar for cardiologists and hospitalists (59.2% versus 58.5%, P=0.56). Predictive margins from generalized linear models demonstrated (a) lack of continuity with an outpatient cardiologist; (b) documentation of advance care planning in the chart; and (c) patient acceptance of serious illness were associated with higher likelihood of palliative care referral. No interaction effect was noted based on provider specialty. The majority of hospitalists and cardiologists were unaware of palliative care guidelines for patients with heart failure (74.3% versus 70.3%, P=0.71). Factors like patient understanding of disease, provider continuity, and advance care planning documentation may be more impactful in palliative care referral for hospitalized heart failure patients than objective clinical data alone.

"To live until you die could actually include being intimate and having sex": A focus group study on nurses' experiences of their work with sexuality in palliative care.

To examine nurses' experiences of working with issues of sexuality in palliative care. Sexuality has value for human lives and relations and is important for one's overall well-being throughout life. Guidelines for palliative care state that sexuality should be addressed. Previous research shows that the inclusion of sexuality in general health care is deficient, and there is a knowledge gap on how sexuality is addressed in palliative care. Within a qualitative design, the empirical material was obtained through three focus group interviews with eleven registered nurses working in palliative care. The interviews were analysed using qualitative content analysis. Nurses experience that sexuality has an indistinct place in their work, "sexuality" is a word difficult to use, and differing views are held on whether it is relevant to address sexuality, and if so, when? Although they have experiences involving patient and partner sexuality, which is viewed as sexuality in transformation during the palliative care process, nurses seldom explicitly address patient or partner sexuality. Despite the lack of knowledge, routines and organisational support, they acknowledge the importance of addressing sexuality in palliative care, as they express that they want to do right. Overall, nurses appear to follow differing cultural, interpersonal and intrapsychic scripts on sexuality rather than knowledge-based guidelines. This underlines the importance of managers who safeguard the adherence to existing palliative care guidelines where sexuality is already included. In this work, it is important to be aware of norms to avoid excluding patients and partners that differ from the nurses themselves as well as from societal norms on sexuality. The results can be used as a point of departure when implementing existing or new guidelines to include and address sexuality and sexual health needs in palliative care.

Recommendations Relevant to Physiatrists in New Clinical Practice Guidelines for Quality Palliative Care.

Recommendations Relevant to Physiatrists in New Clinical Practice Guidelines for Quality Palliative Care.

Palliative Care in Children With Heart Disease Treated in an ICU.

Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. A retrospective single-center study. A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital. Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017. Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult. Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied.

The central role of provider training in implementing resource-stratified guidelines for palliative care in low-income and middle-income countries: Lessons from the Jamaica Cancer Care and Research Institute in the Caribbean and Universidad Católica in Latin America.

Individuals in low-income and middle-income countries (LMICs) account for approximately two-thirds of cancer deaths worldwide, and the vast majority of these deaths occur without access to essential palliative care (PC). Although resource-stratified guidelines are being developed that take into account the actual resources available within a given country, and several components of PC are available within health care systems, PC will never improve without a trained workforce. The design and implementation of PC provider training programs is the lynchpin for ensuring that all seriously ill patients have access to quality PC services. Building on the Breast Health Global Initiative's resource-stratified recommendations for provider education in PC, the authors report on efforts by the Jamaica Cancer Care and Research Institute in the Caribbean and the Universidad Católica in successfully developing and implementing PC training programs in the Caribbean and Latin America, respectively. Key aspects of this approach include: 1) fostering strategic academic partnerships to bring additional expertise and support to the effort; 2) careful adaptation of the curriculum to the local context and culture; 3) early identification of feasible metrics to facilitate program evaluation and future outcomes research; and 4) designing PC training programs to meet local health system needs.

Creating Evidence: Findings from a Grounded Theory of Memory-Making in Neonatal Bereavement Care in Australia

PurposePerinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss. Design and methodsWe conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept. Results“Creating evidence” emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit. ConclusionsCreating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement. Practice implicationsParents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.

Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital.

Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital. This was a retrospective medical record review. The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management. Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU. These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.

Analysis of Regional Palliative Care Strategies: Do Health Policies Influence the Development of Assistance Coverage?

In Spain, health competencies are decentralized, and each autonomous community implements its own plans. Our aim is to determine if the existence of regional palliative care plans implies an improvement in health care coverage. We reviewed regional palliative care plans published in Spain and analyzed the following variables: number and profile of palliative care resources, guidelines and objectives of implementation of resources of these plans, and compliance with European standards. The publication of regional plans is associated with an increase in specific resources in the following years. From 2004 to 2009, the implementation of plans in 6 autonomous communities was associated with an increase in palliative care resources compared to those without a strategy (odds ratio: 1.58, P = .02) or with a settled plan (odds ratio: 1.40, P = .07). The same phenomenon was observed between 2009 and 2015 in 4 autonomous communities and 2 autonomous cities compared with those without a strategy (odds ratio: 2.49, P = .001) and those that implemented a plan before 2009 (odds ratio: 2.62, P < .001). Updating and evaluating these regional plans are also associated with the growth of palliative care resources.

Nausea and Vomiting in Advanced Cancer

Nausea and vomiting is a common clinical issue in the advanced cancer patient. The etiology may be related to treatment (chemotherapy, radiation, surgery) or non-treatment clinical issues related to the advanced cancer. A very detailed initial assessment of nausea/vomiting is indicated including frequency, duration, intensity, associated activities, and the presence of anorexia or cachexia and is necessary in order to determine a specific etiology which may allow a potentially specific successful intervention. Various international antiemetic guidelines have been developed for the successful prevention of chemotherapy- and radiotherapy-induced nausea and emesis but the treatment of post-chemotherapy nausea/vomiting and of radiation-induced nausea/vomiting has been less successful. Chronic nausea/vomiting in the advanced cancer patient unrelated to treatment remains a significant clinical problem with few successful treatments and interventions. NCCN and ASCO palliative care guidelines provide various treatment suggestions but these are based on empiric evidence with very few clinical trials available to provide demonstrated effective treatments. Recent randomized clinical trials have demonstrated that olanzapine may be an effective agent for the prevention and treatment of chemotherapy-induced nausea and emesis as well as treatment of chronic nausea and vomiting unrelated to treatment.

Knowledge and comfort related to palliative care among Indonesian primary health care providers.

This study investigated Indonesian primary health care providers' knowledge and comfort towards palliative care. A descriptive cross-sectional design was used. From August 2017 to February 2018, the research team approached 70 primary care centres in the Yogyakarta province of Indonesia and invited health care providers to complete the Palliative Care Quiz for Nursing - Indonesia and describe their comfort in caring for terminally ill patients. Data were obtained from 516 health care providers. The mean (±s.d.) score of palliative care knowledge was low (7.8±3.3 of a possible score of 20). Current comfort level in providing palliative care was also low (1.6±2.7 of a possible score of 10). Only 11.3% of palliative care knowledge was explained by respondents understanding of palliative care definition, their education levels and experience in providing palliative care in hospital. However, 82.9% of provider comfort was explained by their experiences for caring for terminally ill patients in primary healthcare centres, palliative care training and years of work experience in primary healthcare centres. Indonesian evidence-based palliative care standards and guidelines must be established with education offered to all providers.

Symptom Burden, Health Services Utilization and Places and Causes of Death in People with Dementia at the End of Life: the Bavarian Dementia Survey (BayDem)

Dementia is usually a life-limiting disease. However, evidence-based guidelines for palliative care for people with dementia (PwD) are currently lacking. One reason for this is the dearth of reliable empirical data on PwD at the end of life. The aim of this study is to describe the symptom burden, causes of death, places of death and the use of various health services for PwD at the end of life. The Bavarian Dementia Survey (BayDem) was a multi-center, longitudinal study at 3 different sites in Bavaria, Germany (Dachau, Kronach, Erlangen). Participants were PwD defined by ICD-10 and their informal caregivers. Data were collected in standardized face-to-face interviews in cooperation with local actors. In order to obtain comparable groups, deceased and non-deceased PwD were matched using 1:1 propensity score matching. For the statistical analyses, McNemar tests as well as paired t-tests were used. In this analysis, 58 deceased and 58 non-deceased PwD were studied (n=116). In most cases, PwD died at home (36.2%), in hospital (25.9%) or in a nursing home (19.0%), but no one in palliative care. The most common causes of death were respiratory (13.8%) and cardiovascular complications (12.1%) as well as stroke (12.1%). PwD at the end of life showed more pronounced physical comorbidities than the other PwD (Charlson-Index: M=2.75 vs. M=1.80; p=0.030, Cohen's d=0.425) and were therefore admitted to hospital (46.6 vs. 12.1%, p<0.001, OR=6.250) or emergency departments (22.4 vs. 3.4%, p=0.007, OR=6.500) more frequently. Behavioral and psychological symptoms were very pronounced (NPI Score: M=31.67 vs. M=24.77, p=0.118, Cohen's d=0.303). Nevertheless, the utilization of outpatient health services was low. The results underline the need to develop evidence-based guidelines to provide palliative care specifically adapted to the needs of PwD at the end of life. In this context, the high incidence of behavioral and psychological symptoms should be taken into account, as should the high incidence of physical comorbidities. Considering the frequent hospital admissions, special attention should also be paid to the development of recommendations for the inpatient sector (acute hospital and palliative care unit).

Palliative care guidelines for the management of HIV-infected people in South Africa.

The Southern African Journal of HIV Medicine is focused on HIV/AIDS treatment, prevention and related topics relevant to clinical and public health practice. The purpose of the journal is to disseminate original research results and support high-level learning related to HIV Medicine. It publishes original research articles, editorials, case reports/case series, reviews of state-of-the-art clinical practice and correspondence.

BEYOND BINGO: THE IMPACT OF ACTIVITY ENGAGEMENT IN AN ALL-AFRICAN AMERICAN ASSISTED LIVING COMMUNITY

More than one million older adults reside in assisted living (AL) communities in America. This figure is projected to double by the year 2030. It is typical for residents in these communities to have cognitive and physical impairments requiring differing levels of care. Due in part to these impairments, it is vital to the health and well-being of residents to participate in meaningful recreational activities. This secondary analysis of ethnographic observations totaling 818 hours and semi-structured interviews with 25 residents enrolled in an NIA-funded study (5R01AG047408) explores in depth barriers and facilitators to activity engagement in a large (90+ bed) moderate-income, all-African-American AL community located in a large urban city in the southern US. Residents range in age from 59 to 103 (mean = 85) and are predominantly female. We linked our findings from thematic analysis to six domains of quality palliative care identified by the 2018 National Consensus Project (NCP) Guidelines for Quality Palliative Care: cultural, physical, psychological, social, structures and processes, and spiritual aspects of care. Key barriers include limitations related to staffing (a low staff-to-resident ratio and high staff turnover) and activities that do not adequately address needs of residents with varying interests and abilities. A robust daily devotion and other activities that incorporate culturally relevant music are activities highly valued by most residents. Implications of these findings contribute to a larger effort to create positive change in the structures and processes of care in AL and can inform best practices for palliative care within these communities.

Australian GPs\u2019 perceptions of barriers and enablers to best practice palliative care: a qualitative study

BackgroundGeneral Practitioners (GPs) often play an important role in caring for people at the end of life. While some international studies suggest that GPs experience a number of barriers to providing palliative care, little is known about views and experiences of GPs in Australia. This study explored Australian GPs’ perceptions of barriers and enablers to the provision of palliative care and provides new insights into how to implement best practice care at the end of life.MethodsThis was a qualitative study using 25 semi-structured phone interviews conducted with GPs practising in metropolitan and non-metropolitan New South Wales, Australia. Data were analysed using qualitative content analysis.ResultsGPs reported difficulties with palliative care provision due to i) the complex and often emotional nature of doctor-family-interaction; ii) a lack of evidence to guide care; and iii) the need to negotiate roles and responsibilities within the healthcare team. GPs listed a number of strategies to help deal with their workload and to improve communication processes between healthcare providers. These included appropriate scheduling of appointments, locally tailored mentoring and further education, and palliative care guidelines which more clearly outline the roles and responsibilities within multidisciplinary teams. GPs also noted the importance of online platforms to facilitate their communication with patients, their families and other healthcare providers, and to provide centralised access to locally tailored information on palliative care services. GPs suggested that non-government organisations could play an important role by raising awareness of the key role of GPs in palliative care provision and implementing an “official visitor” program, i.e. supporting volunteers to provide peer support or respite to people with palliative care needs and their families.ConclusionsThis study offers new insights into strategies to overcome well documented barriers to palliative care provision in general practice and help implement optimal care at the end of life. The results suggest that researchers and policy makers should adopt a comprehensive approach to improving the provision of palliative care which tackles the array of barriers and enablers identified in this study.

Mind the gap: Patients’ experiences and perceptions of goal setting in palliative care

Background: Palliative care aims to support people to live actively until death. A rehabilitative approach which includes goal setting could be an important way of achieving this. Goal setting is well established in best practice guidelines for palliative care. However little is known about how the process of goal setting actually happens in practice, especially from patients’ points of view. We aimed to investigate patients’ expectations, experience and perceptions of goal setting in one hospice.Methods: We conducted 15 semi-structured interviews with a sample of patients who had been admitted to a Scottish hospice for symptom control. Interviews were digitally recorded, transcribed verbatim and analysed using Framework Analysis.Results: Participants understood and valued goal setting but did not always share their goals with hospice staff. These were often participants’ own personal activity-based goals that they worked on in parallel, but not always in partnership with hospice professionals. Participants were able to adapt their goals as their situation changed.Conclusions: Our findings revealed a gap between the goals that participants identified and worked towards compared with those that participants perceived the professionals focussed on. As a result, opportunities were missed for patients and professionals to work together to achieve goals.

Natural Language Processing Accurately Measures Adherence to Best Practice Guidelines for Palliative Care in Trauma

ContextThe Trauma Quality Improvement Program Best Practice Guidelines recommend palliative care (PC) concurrent with restorative treatment for patients with life-threatening injuries. Measuring PC delivery is challenging: administrative data are nonspecific, and manual review is time intensive. ObjectivesTo identify PC delivery to patients with life-threatening trauma and compare the performance of natural language processing (NLP), a form of computer-assisted data abstraction, to administrative coding and gold standard manual review. MethodsPatients 18 years and older admitted with life-threatening trauma were identified from two Level I trauma centers (July 2016—June 2017). Four PC process measures were examined during the trauma admission: code status clarification, goals-of-care discussion, PC consult, and hospice assessment. The performance of NLP and administrative coding were compared with manual review. Multivariable regression was used to determine patient and admission factors associated with PC delivery. ResultsThere were 76,791 notes associated with 2093 admissions. NLP identified PC delivery in 33% of admissions compared with 8% using administrative coding. Using NLP, code status clarification was most commonly documented (27%), followed by goals-of-care discussion (18%), PC consult (4%), and hospice assessment (4%). Compared with manual review, NLP performed more than 50 times faster and had a sensitivity of 93%, a specificity of 96%, and an accuracy of 95%. Administrative coding had a sensitivity of 21%, a specificity of 92%, and an accuracy of 68%. Factors associated with PC delivery included older age, increased comorbidities, and longer intensive care unit stay. ConclusionNLP performs with similar accuracy with manual review but with improved efficiency. NLP has the potential to accurately identify PC delivery and benchmark performance of best practice guidelines.

Impact of timing of palliative care consults on disposition to type of hospice care.

50 Background: The 2018 ASCO palliative care guidelines recommend palliative care team (PCT) involvement within 8 weeks for patients with an advanced cancer diagnosis. However, the optimal timing and impact of PCT consults on patient disposition in the inpatient setting has not been established. We investigated whether the timing of PCT involvement for in-patients with an advanced cancer diagnosis affected disposition to a home or inpatient hospice setting. Methods: We queried Hahnemann University Hospital’s Palliative Care In-patient database from 2016-2018 for patients with advanced cancer diagnosis, estimated life expectancy of &lt; 6 months, and recommendation for hospice. Dates of admission, initial PCT consult, discharge to an outpatient vs an inpatient hospice setting/in hospital death were examined. We then examined differences in hospice disposition and timing of PCT consults to determine the ideal consult time. Chi square analysis was used to determine differences in hospice disposition setting and timing of PCT consult. Results: We observed that 75% of PCT consults in our hospital are placed &lt;10 days of admission. We also found that a statistically significant higher percentage of patients were discharged to a home hospice setting (35.1%) when using a PCT consult time of &lt;10 days (p&lt;0.01). Only 17.5% were discharged home when PCT was consulted &gt;10 days after admission. We examined other cut-off times for consultation, but the difference in outcome was not statistically significant. Conclusions: Our findings show that a statistically significant higher percentage of patients went to a home hospice setting if PCT was consulted &lt;10 days of admission. This suggests that early PCT involvement can result in more patients being discharged to a home hospice setting and by extension improve the quality of end of life care for patients. We aim to implement criteria for appropriate timing of PCT consults at our institution and measure post implementation data with the goal of increasing the number of patients discharged to a home hospice setting. [Table: see text]

Principles of Cancer Diagnosis

As knowledge of cancer pathology deepens, so does the complexity of cancer care. Recommendations from the National Cancer Policy Board Cancer Care System focus on using high-volume centers for patients undergoing high-mortality procedures and clinical trials to develop evidence-based guidelines for cancer prevention, diagnosis, treatment, palliative care, and quality care. Through the implementation of many of these principles, patient-centered care has become increasingly recognized as fundamental model for healthcare. This review contains 2 figures, 1 table, and 25 references. Key Words: Cancer, Cancer staging, Core needle biopsy, Fine needle aspiration, Liquid biopsy, Lymph nodes, Sentinel lymph node(s), Surgical biopsy

Principles of Cancer Diagnosis

As knowledge of cancer pathology deepens, so does the complexity of cancer care. Recommendations from the National Cancer Policy Board Cancer Care System focus on using high-volume centers for patients undergoing high-mortality procedures and clinical trials to develop evidence-based guidelines for cancer prevention, diagnosis, treatment, palliative care, and quality care. Through the implementation of many of these principles, patient-centered care has become increasingly recognized as fundamental model for healthcare. This review contains 2 figures, 1 table, and 25 references. Key Words: Cancer, Cancer staging, Core needle biopsy, Fine needle aspiration, Liquid biopsy, Lymph nodes, Sentinel lymph node(s), Surgical biopsy

Principles of Cancer Diagnosis

As knowledge of cancer pathology deepens, so does the complexity of cancer care. Recommendations from the National Cancer Policy Board Cancer Care System focus on using high-volume centers for patients undergoing high-mortality procedures and clinical trials to develop evidence-based guidelines for cancer prevention, diagnosis, treatment, palliative care, and quality care. Through the implementation of many of these principles, patient-centered care has become increasingly recognized as fundamental model for healthcare. This review contains 2 figures, 1 table, and 25 references. Key Words: Cancer, Cancer staging, Core needle biopsy, Fine needle aspiration, Liquid biopsy, Lymph nodes, Sentinel lymph node(s), Surgical biopsy