American Journal of Hospice and Palliative Medicine®

To provide high quality care to all patients who have serious illness, health-care systems must develop effective generalist palliative care strategies.

To identify palliative care quality gaps within a range of settings in the California safety net and to develop theory-based interventions to address them.

Structured assessment using the National Consensus Project for Quality Palliative Care Clinical Practice Guidelines and a Predisposing, Reinforcing, and Enabling Constructs in Educational/Environmental Diagnosis and Evaluation intervention planning model-based worksheet, which integrates behavior theories to identify factors that predispose, enable, and reinforce clinicians to perform recommended behaviors.

Adviser pairs—one from palliative care and one from a partner service line—from 10 California public health-care systems conducted assessments at their sites. A steering committee provided educational webinars, best practices, and assessment tools.

Adviser pairs interviewed at least 6 partner service line stakeholders to identify palliative care quality gaps, behaviors clinicians should perform to close gaps, and factors that predispose, enable, and reinforce those behaviors.

Partner service lines were primary care (n = 4), surgery (n = 3), emergency department (n = 2), and radiation oncology (n = 1). Selected gaps were advance care planning and goals of care communication (n = 6), identifying patients with serious illness (n = 3), and pain management (n = 1). All sites designed multiple interventions to address gaps, based on factors that predispose, enable, and reinforce a target audience to perform a target behavior. Advisers reported that the program strengthened relationships between palliative care and the partner service line

This structured assessment helped busy clinicians develop theory-based generalist palliative care interventions.

The objective of this study is to identify contextual access factors to home and community health services for end-of-life support for older adults with serious life-limiting illness, as well as determine if access to home and community services is associated with health-care utilization.

This study includes an environmental scan, grey literature review, qualitative interviews, and health-care utilization analysis. This study is a subproject of the Grudzen et al. Primary Palliative Care for Emergency Medicine (PRIM-ER) study.

Analysis will include data collection from 17 health systems implementing the PRIM-ER intervention.

For the qualitative interviews, one emergency medicine (EM) physician and one EM nurse will be interviewed from each of the 17 participating health systems. For the health-care utilization analysis, we will use the Senior Care Services Scale (SCSS), American Hospital Association Annual Survey of Hospitals (AHA-ASH), and Medicare claims for all emergency department (ED) visits for serious illness who present at each participating health system.

The contextual analysis will obtain data on home and community services, such as hospice, home health services, assisted living, integrative medicine services, etc., available around each health system’s highest volume ED, federal and state regulations influencing access to services, as well as EM provider perspectives on access to services. The health-care utilization analysis will determine if SCSS scores, which measure service availability, are associated with health-care usage. High or low SCSS scores are determined by comparing health system service availability on the AHA-ASH to the national median SCSS value.

A significant proportion of patients with advanced primary or metastatic intrathoracic malignancy will eventually develop central airway obstruction. The morbidity associated with malignant airway obstruction (MAO) is considerable and the management is difficult. Our aim was to evaluate the outcomes of tracheobronchial stenting in patients with MAO and its role in palliative care.

This retrospective study involved a consecutive case series of patients with advanced cancer with MAO who underwent tracheobronchial stenting between August 2014 and August 2019. The European Cooperative Oncology Group (ECOG) scale was used to evaluate patient functional status before and after tracheobronchial stenting. Univariate survival analysis included Kaplan-Meier curves with Log-Rank test, while Cox regression was used as a multivariate analysis.

We included 28 patients with median age of 55.0 years (interquartile range = 49.3-66.5) and 89.3% male. The most frequent primary tumour was the esophagus followed by lungs. The majority of the patients (75%) expressed immediate symptom relief after stenting and there was a significant improvement in the mean ECOG performance status (PS; P = .005). There was no intraprocedure mortality and complications were observed in 6 patients. The median survival after airway stenting was 39.0 days (95% CI = 32.2-45.8) with poorer PS after stent insertion associated with lower overall survival (hazard ratio = 2.3 [95% CI = 1.1-4.9], P = .030) on multivariate analysis.

Airway stent is a safe and effective procedure that offers rapid palliation of symptoms with no major complications. Therefore, stent placement should be considered as part of the treatment of patients with terminal cancer.

This study describes the characteristics and outcomes of patients referred to an emergency department (ED)-based end-of-life (EOL) service in a tertiary acute hospital in Hong Kong. We examine how emergency physicians (EPs) perform in recognizing and managing dying patients.

From September 2010 to April 2018, patients referred to this EOL service in this hospital were included. A group of 5 EPs assessed whether the referred patient would die within a few days. Dying patients (EOL group) were admitted to ED-based EOL service whereas those not likely dying within few days (non-EOL group) would continue management in respective specialty wards. Baseline characteristics of these 2 groups were compared. The time-to-death and use of opioids and anticholinergics were compared.

In total, 783 of 830 patients assessed were recognized as being in dying phase, with 688 admitted under ED-based EOL care. Their demographics and characteristics were described. Mean time from assessment to death (time-to-death) was significantly less in EOL group (38.93 hours) than in non-EOL group (250.36 hours; P = .004). Mean time-to-death was not significantly different between those under EP-based EOL service or not. The ED-based EOL care had significantly more patients receiving symptomatic treatment.

The characteristics of patients under an ED-based EOL service are described. Emergency physicians are capable of recognizing dying patients. Emergency department-based EOL service does not alter the dying process and offers adequate palliation of symptoms. Emergency physician should assume a more active role in providing adequate EOL care to suitable patients.

General practitioners (GPs) are important providers and coordinators of palliative home care (PHC). Through this double role, their perspectives and their treatment decisions influence PHC fundamentally. This study aims to gain deeper insights into GPs’ perspectives regarding PHC in North Rhine, Germany.

An explorative, semistructured focus group was conducted with 7 doctors. The researchers performed content analysis. Main topics were GPs’ role definition in PHC and GPs’ medical activities in PHC.

Participating GPs describe their role in PHC, based on high motivation and positive attitudes toward PHC as a hybrid role: coordinator, provider (mostly in general PHC), and referrer (gateway to palliative care [PC] specialists). According to GPs’ medical activity, participants describe moderate expertise, demanding tasks, and elaborate PHC provision for GPs. Participants stressed the importance of PC in GPs’ work. But also PC is a small field in general practice. GPs’ PHC benefits from the deep trust resulting from the often close and long-term GP–patient relationship. Complexity and bureaucracy of PHC structures as well as the lack of resources and multidisciplinary cooperation are named as barriers for providing PHC. The highest level of care is reached in specialized PHC, which only very few, severely impaired patients need.

Participating GPs see themselves as important PHC providers as well as referrers and coordinators. Complexity and discontinuity in PC arrangements create challenges for their provision. Therefore, they long for reduced bureaucratic burdens.

Patients’ personality traits can play an important role in the end-of-life care process.

The present study aimed to investigate the relationship between personality traits and dignity in cancer patients nearing death. In addition, the associations between personality traits and physical, psychological symptoms, and coping strategies during the end-of-life stage were explored.

The study is cross-sectional. The sample consisted of 210 participants with a Karnofsky Performance Status (KPS) lower than 50 and a life expectancy of a few weeks. For each patient, personal and clinical data were collected and a set of validated rating scales, assessing personality, dignity, physical, psychological symptoms and coping strategies was administered during the first psychological consultation.

The results highlighted significant associations between personality traits and dignity. In particular, Conscientiousness was negatively correlated with Social Support and Extroversion was negatively associated with Loss of Purpose and Meaning. Neuroticism was related to all the dimensions of dignity and Extroversion was significantly associated with the physical and psychological symptoms. Regarding coping styles, active coping strategies were predictors of Extroversion and Agreeableness. Conversely, anxiety symptoms predicted the Neuroticism trait.

Personality traits seem to be actively involved into the loss of dignity. These findings highlighted the importance of including personality traits and dignity into the patient’s care process. Exploring individual differences and coping mechanisms at the end-of-life could improve palliative care and lead to better patient-tailored psychological interventions.

Malignancy-related ascites (MRA) is the terminal stage of many advanced cancers, and the treatment is mainly palliative. This study looked for epidemiology and inpatient hospital outcomes of patients with MRA in the United States using a national database.

The current study was a cross-sectional analysis of 2015 National Inpatient Sample data and consisted of patients ≥18 years with MRA. Descriptive statistics were used for understanding demographics, clinical characteristics, and MRA hospitalization costs. Multivariate regression models were used to identify predictors of length of hospital stay and in-hospital mortality.

There were 123 410 MRA hospitalizations in 2015. The median length of stay was 4.7 days (interquartile range [IQR]: 2.5-8.6 days), median cost of hospitalization was US$43 543 (IQR: US$23 485-US$82 248), and in-hospital mortality rate was 8.8% (n = 10 855). Multivariate analyses showed that male sex, black race, and admission to medium and large hospitals were associated with increased hospital length of stay. Factors associated with higher in-hospital mortality rates included male sex; Asian or Pacific Islander race; beneficiaries of private insurance, Medicaid, and self-pay; patients residing in large central and small metro counties; nonelective admission type; and rural and urban nonteaching hospitals.

Our study showed that many demographic, socioeconomic, health care, and geographic factors were associated with hospital length of stay and in-hospital mortality and may suggest disparities in quality of care. These factors could be targeted for preventing unplanned hospitalization, decreasing hospital length of stay, and lowering in-hospital mortality for this population.

Understanding the preferences for end-of-life (EOL) care is imperative in providing quality care to patients with life-threatening illness. However, it is difficult for patients, families, and health-care providers to initiate EOL conversations in China. An easy-to-use tool that could help health-care providers initiate EOL discussions is the Heart to Heart Card Game (HHCG), originally designed for Chinese Americans.

To evaluate the EOL preferences among Chinese patients with cancer using the HHCG.

We conducted a descriptive study to assess EOL preferences using HHCG among patients at the oncology chemoradiotherapy department of a Chinese tertiary hospital.

We recruited 58 patients in total of which 40 (69%) patients completed HHCG. The most frequently selected card was “I want my family to get along,” followed by “I don’t want to be a burden to my family,” and “I want to maintain my dignity.” Among the 3 cards selected, social needs were rated as the most important (36.7%), followed by spiritual needs (35.8%), physical needs (20.0%), and financial needs (7.5%). The evaluation of the HHCG revealed that more than 70% of the participants highly valued HHCG.

The HHCG can be used as a communication tool to encourage EOL discussions between cancer patients and health-care providers in China. Moreover, Chinese patients with cancer attach significant importance to their family and maintaining dignity at the EOL.

Prior to national spread, the Department of Veterans Affairs implemented a pilot of the life-sustaining treatment decisions initiative (LSTDI) to promote proactive goals of care conversations (GoCC) with seriously ill patients, including policy and practice standards, an electronic documentation template and order set, and implementation support.

To describe a 2-year pilot of the LSTDI at 4 demonstration sites.

Prospective observational study.

A total of 6664 patients who had at least one GoCC.

Descriptive statistics characterized patient demographics, goals of care, LST decisions, and risk of hospitalization or mortality among patients with at least one GoCC. Participants were on average 71.4 years old, 93.2% male, 87.1% white, and 64.7% urban; 27.3% died by the end of the pilot period. Fifteen percent lacked decision-making capacity (DMC). Nonmutually exclusive goals included to be cured (7.6%), to prolong life (34%), to improve/maintain quality of life (61.5%), to be comfortable (53%), to obtain support for family/caregiver (8.4%), to achieve life goals (2.1%), and other (10.5%). Many GoCCs resulted in a do not resuscitate (DNR) order (58.8%). Patients without DMC were more likely to have comfort-oriented goals (77.3% vs 48.8%) and a DNR (84% vs 52.6%). Chart abstraction supported content validity of GoCC documentation.

The pilot demonstrated that standardizing practices for eliciting and documenting GoCCs resulted in customized documentation of goals of care and LST decisions of a large number of seriously ill patients and established the feasibility of spreading standardized practices throughout a large integrated health care system.

Heart failure (HF) is a complex, life-limiting disease that is prevalent and burdensome. All major cardiology societies and international clinical practice guidelines recommend the integration of palliative care (PC) interventions alongside usual HF management.

The purpose of this review of the literature was to evaluate the various barriers to the early initiation of PC for HF patients in the primary care setting.

An integrative literature review was conducted in order to assess and incorporate the diverse sources of literature available. An EBSCO search identified relevant articles in the following databases: Medline complete, Academic Search Premier, CINAHL, PsycINFO, Cochrane Library, and SocINDEX. The search was limited to full text, peer reviewed, English only, and published between 2010 and 2019.

Barriers to the integration of PC for HF patients include poor communication between provider/patient and interdisciplinary providers, the misperception and miseducation of what PC is and how it can be incorporated into patient care, the unpredictable disease trajectory of HF, and the limited time allowed for patient care in the primary care setting.

The results of this review highlight a lack of communication, time, and knowledge as barriers to delivering PC. Primary care providers caring for patients with HF need to establish an Annual Heart Failure Review to meticulously evaluate symptoms and allow the time for communication involving prognosis, utilize a PC referral screening tool such as the Needs Assessment Tool: Progressive Disease-Heart Failure, and thoroughly understand the benefits and appropriate integration of PC.

End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences.

We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews.

Palliative and hospice care.

Full-text abstraction of 84 articles, identifying 16 articles.

Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report).

Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results.

Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.

To present our center’s experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit.

All cases were identified from our Cardiovascular intensive care unit ( CVICU). Patients were terminally ill children with no other surgical or medical option who were transported home between 2014 and 2018, for terminal extubation and end-of-life care according to their families’ wishes.

The patients were 7, 9 months, and 19 years; and they had very complex and chronic conditions. The families were approached by the CVICU staff during multidisciplinary meetings, where goals of care were established. Parental expectations were clarified, and palliative care team was involved, as well as home hospice was arranged pre transfer. The transfer process was discussed and all the needs were established. All patients had unstable medical conditions, with needs for transport for withdrawal of life support and death at home. Each case needed a highly trained team to support life while in transport. The need of these patients required coordination with home palliative care services, as well as community resources due to difficulty to get in their homes.

Transportation of pediatric cardiac critical care patients for terminal extubation at home is a relatively infrequent practice. It is a feasible alternative for families seeking out of the hospital end-of-life care for their critically ill and technology dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports.