The purpose of this pilot was to identify the effects of a 4-credit interdisciplinary undergraduate course focused on communication strategies to enhance spiritual care at the end of life. The course provided students with opportunities to enhance their ability to communicate empathically with individuals facing the end of life. Evidence-based content focused on ways to live each day with hope and gratitude, strengthen relationships, create a legacy, and find meaning and purpose in life and death. Narayanasamy's (1999) Actioning Spirituality and Spiritual Care Education and Training in Nursing model guided project development. The study used a prospective, pretest/posttest design. Participants included undergraduate students (n = 34) from nursing, premedicine, athletic training, business, economics, and religious studies at a Midwest liberal arts college. Statistically significant differences were found in students' attitudes toward and knowledge of spirituality/spiritual care (P < .0001, Cohen's d = 0.59), spiritual care competence (P < .0001, Cohen's d = 0.79), and level of response empathy through role play (P < .0001, Cohen's d = 0.92). Many students referred to this course as “life changing” and “healing.” As our students go out into the community, they may intimately touch the lives and hearts of future patients, family, and friends who face the end of life with their compassionate words.
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.
Infections often impact care of hospice patients; however, limited guidance exists for end-of-life infection management. Regardless of patient prognosis, appropriate antibiotic use is necessary for maintaining quality of life. Antibiotics may be associated with serious adverse events, posing safety risks to patients that should be factored into the appropriateness determination. Fluoroquinolone antibiotics are prescribed frequently in hospice. There are 8 fluoroquinolone drug safety warnings regarding risk for serious adverse events communicated by the US Food and Drug Administration. A retrospective chart review at a hospice pharmacy services provider identified decedents who used a fluoroquinolone during a 1-month period. Charts were evaluated for the presence of risk factors for serious adverse events, including advanced age (86.0%), orders for multiple QTc prolongation risk medications (51.5%), hypertension (64.1%), and concomitant corticosteroids (22.9%). Findings demonstrate notable risk with the use of at least 1 class of antibiotics in a hospice population. STAMPS is a hospice decision support tool, developed to guide symptom-driven antibiotic use that incorporates safety assessment and individual goals of care into infection management planning. The tool can also serve as a framework for patient-centered communications about appropriate antibiotic use in hospice between providers, patients, and families.
The objective of this study was to understand the organizational context of nurses' use of advance care plans (ACPs). We use a modified version of Bandera's social cognitive theory model to understand relationships between organizational constructs such as experience with ACPs and satisfaction with organizational support and oncology nurses' knowledge, behaviors, and perceptions around ACPs. The sample included practicing registered nurses with a major focus in oncology who were members of the Oncology Nursing Society in the United States, and nurses at medical hospital or community care settings were included. Institutional review board approval was obtained, and permission was granted from the oncology nursing organization for online surveys. A validated ACP survey was used to measure nurses' experiences and perceptions of working with ACP. Perceptions of ACP by patients, vicarious experience with ACP, direct experience of ACP, having received training, and perceptions of organizational support for ACP were all predictive of total ACP behaviors in the workplace. The final regression model had 3 independent variables and accounted for 33% of the variance in total ACP behaviors. Both vicarious and direct experience with ACP was associated with ACP behaviors in workplaces. This implies the need for more vicarious and direct training experiences, as well as organization support, to build self-efficacy to perform ACP.
The purpose of this quality improvement project was to evaluate a statewide initiative promoting Advance Care Planning (ACP) to educate and support multidisciplinary ACP educators and provide tools to start ACP conversations in a predominantly rural state of the Upper Midwest. Individual objectives were to (1) motivate people of different professions and backgrounds to support the vision and (2) implement a system to educate and maintain a pipeline of ACP educators in appropriate methodologies to enable ACP in distant communities. The Advance Care Planning: Quality Conversations coalition was formed in 2015 to improve health care across the life span. The Reach-Effectiveness-Adoption-Implementation-Maintenance framework was applied to evaluate the project. Outcome variables were measured before, during, and after program implementation through service statistics and a questionnaire. Participation in the coalition's membership team between September 2015 and September 2019 ranged from 18 to 36 with a median of 27 and mode of 27. At least 20 different professions were represented. The coalition provided funds for educating 9 ACP instructors and 180 facilitators according to the Respecting Choices–First Steps ACP program. The coalition's mission has generated sustained interest for 4 years. Key elements and obstacles to implementing a statewide coalition were identified.
A lay patient navigator model involving a culturally tailored intervention to improve palliative care outcomes for Hispanics with advanced cancer was tested across 3 urban and 5 rural cancer centers in Colorado. Five home visits were delivered over 3 months to 112 patients assigned to the randomized controlled trial's intervention arm. Grounded in core Hispanic values, visits addressed palliative care domains (advance care planning, pain/symptom management, and hospice utilization). To describe the content of patient navigator visits with patients/family caregivers, research team members analyzed 4 patient navigators' field notes comprising 499 visits to 112 patients. Based on previous work, codes were established a priori to identify ways patient navigators help patients/family caregivers. Key words and comments from field notes were classified into themes using ATLAS.ti and additional codes established. Nine common themes and exemplars describing the lay patient navigator role are described: activation/empowerment, advocacy, awareness, access, building rapport, providing support, exploring barriers, symptom screening, and the patient experience. Patient navigators used advocacy, activation, education, and motivational interviewing to address patient/family concerns and reduce barriers to quality palliative care in urban and rural settings. Adapting and implementing this model across cultures has potential to improve palliative care access to underserved populations.
Very little is known about the characteristics of the Medicare beneficiaries receiving hospice at home, defined using the Medicare Healthcare Common Procedure Coding System codes, as a traditional home, an assisted living facility, or a nursing home. A secondary analysis of 2015 Medicare data using regression to describe the characteristics of decedents (n = 675 782) in hospice residing in a traditional home, an assisted living facility, and a nursing home was completed. Results suggest that the proportion of Medicare decedents in hospice with more than 180 lifetime days in hospice was highest among those who resided in an assisted living facility (25.03%) compared with those who resided in a nursing home (18.87%) or in a traditional home (13.04%). Regression findings suggest that, compared with decedents in hospice without dementia who resided in a traditional home, decedents in hospice with a primary diagnosis of dementia were more likely to reside in an assisted living facility (adjusted odds ratio, 2.29; P < .0001) when controlling for other factors. In summary, decedents in hospice who resided in a traditional home have different characteristics than decedents who resided in an assisted living facility or a nursing home. Interdisciplinary providers should consider these differences when managing hospice interventions.
Health care provider communication proficiency is critical in the initiation and revisitation of these discussions throughout the trajectory of chronic illness. The delivery of palliative care (PC) throughout the continuum of illness has traditionally been underutilized. Nurses have the ability to significantly improve PC utilization through the use of advance care planning strategies to confidently initiate conversations with patients and families at multiple points throughout the continuum of illness. Nurses are uniquely positioned to contribute to the improvement of care provided to terminally and chronically ill patients because of the relationship developed and the knowledge of patient-specific disease progression that unfolds during the time spent with patients. In this study, nurses improved communication efficacy by learning to utilize advance care planning–specific interview strategies inclusive of scripting and cued language when initiating PC conversations. The preintervention/postintervention confidence levels of nurses in initiating early PC conversations significantly increased to improve the delivery of PC to patients.
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement.
AIMS: To characterize the existing use and identify barriers to seeking palliative care consults in children admitted to the Pediatric Intensive Care Unit (PICU) with OHCA.
DESIGN: Mixed-methods quasi-experimental study.
PARTICIPANTS: Physicians (MD/DO), nurse practitioners, and registered nurses who provide care in the PICU.
RESULTS: Overall, nurses felt palliative care was consulted "not nearly enough" (43%), while the majority of physicians (53.9%) perceived palliative care services are requested either "just the right amount" (30.8%) or "too often" (23.1%). The top 3 desired palliative services were (1) patient and family psychosocial support, (2) assistance with determining goals of care, and (3) counseling and education. Barriers to consults were forgetting/not thinking about consulting, and family refusal of palliative care consult. No statistical differences among participant groups were found for likelihood to consult palliative care, unless the patient faced imminent death.
CONCLUSIONS: Pediatric Intensive Care Unit providers desire assistance from palliative care teams for help with identifying goals of care, providing psychosocial support, as well as education to the patients and their families. Unfortunately, there remains a large discrepancy between physicians and nurses when it comes to how often palliative care is, and should, be consulted.
BACKGROUND: With the highest number of cases in the world as of April 13, 2020, New York City (NYC) became the epicenter of the global coronavirus disease 2019 (COVID-19) pandemic. The data regarding palliative team involvement in patients with COVID-19, however, remains scarce. We aimed to investigate outcomes of palliative team involvement for the patients with COVID-19 in NYC.
METHODS: Consecutive 225 patients with confirmed COVID-19 requiring hospitalization in our urban academic medical center in NYC were analyzed. Patients were divided into 2 groups, those with a palliative care consult (palliative group: 14.2% [n = 32]) versus those with no palliative care consult (no palliative group: 85.8% [n = 193]).
RESULTS: The palliative group was older and had more comorbidities. During the hospital course, the palliative group had more intensive care unit stays, rapid response team activations, and more use of vasopressors (P < .05). Patients with palliative care had higher rates of invasive mechanical ventilation than those without (46.9% vs 10.4%, P < .001). Cardiopulmonary resuscitation was performed in 12 patients (6.5% vs 5.2%, P = .77) and death rate was 100% in both subsets. Notably, initial code status was not different between the 2 groups, however, code status at discharge was significantly different between them (P < .001). The rate of full code decreased by 70% in the palliative group and by 47.5% in the no palliative care group from admission to the time of death.
CONCLUSIONS: Critically ill patients hospitalized for COVID-19 benefit from palliative team consults by helping to clarify advanced directives and minimize futile resuscitative efforts.
OBJECTIVE: Hospice family caregivers are seeking additional information related to patient care, pain and symptom management, and self-care. This study interviewed hospice staff about the potential dissemination of bilingual telenovelas to address these caregiver needs.
METHODS: Qualitative structured phone interviews were conducted with 22 hospice professionals from 17 different hospice organizations in 3 different Midwest states. The interviews were conducted from October to December 2019. Hospice staff volunteers were recruited from conferences, then individual interviews were audio-recorded, transcribed, and thematic analysis was conducted to gain an in-depth understanding of how to best implement telenovela video education into hospice care.
RESULTS: Most participants were hospice nurses (36%) located primarily in Missouri (91%), with a mean of 9 years of experience. Three discrete themes emerged, the educational resources currently provided to patient/families, perceptions of the usefulness of telenovelas for education, and practical suggestions regarding the dissemination of telenovelas. The development of 4 telenovela videos covering different topics is described.
CONCLUSION: Hospice staff responded favorably to the concept of telenovelas and identified important keys for dissemination.
Background: Chaplain-led communication-board-guided spiritual care may reduce anxiety and stress during an intensive care unit (ICU) admission for nonvocal mechanically ventilated patients, but clinical pastoral education does not teach the assistive communication skills needed to provide communication-board-guided spiritual care.
Objective: To evaluate a four-hour chaplain-led seminar to educate chaplains about ICU patients' psychoemotional distress, and train them in assistive communication skills for providing chaplain-led communication-board-guided spiritual care.
Design: A survey immediately before and after the seminar, and one-year follow-up about use of communication-board-guided spiritual care.
Subjects/Setting: Sixty-two chaplains from four U.S. medical centers.
Measurements: Multiple-choice and 10-point integer scale questions about ICU patients' mental health and communication-board-guided spiritual care best practices.
Results: Chaplain awareness of ICU sedation practices, signs of delirium, and depression, anxiety, and post-traumatic stress disorder in ICU survivors increased significantly (all p < 0.001). Knowledge about using tagged yes/no questions to communicate with nonvocal patients increased from 38% to 87%, p < 0.001. Self-reported skill and comfort in providing communication-board-guided spiritual care increased from a median (interquartile range) score of 4 (2-6) to 7 (5-8) and 6 (4-8) to 8 (6-9), respectively (both p < 0.001). One year later, 31% of chaplains reported providing communication-board-guided spiritual care in the ICU.
Conclusions: A single chaplain-led seminar taught chaplains about ICU patients' psychoemotional distress, trained chaplains in assistive communication skills with nonvocal patients, and led to the use of communication-board-guided spiritual care in the ICU for up to one year later.
Background: Information routinely collected during a palliative care consultation request may help predict the level of complexity of that patient encounter.
Objectives: We examined whether patient and consultation characteristics, as captured in consultation requests, are associated with the number of unmet palliative care needs that emerge during consultation, as an indicator of complexity.
Design: We performed a retrospective cohort analysis of palliative care consultations.
Setting: We analyzed quality-of-care data from specialty palliative care consultations contained in the Quality Data Collection Tool of the Global Palliative Care Quality Alliance from 2012 to 2017.
Measurements: Using 13 point-of-care assessments of quality of life, symptoms, advance care planning, and prognosis, we created a complexity score ranging from 0 (not complex) to 13 (highest complexity). Using multivariable linear regression, we examined the relationships of consultation setting and patient characteristics with complexity score.
Results: Patients in our cohort (N = 3121) had an average complexity score of 6.7 (standard deviation = 3.7). Female gender, nonwhite race, and neurological (e.g., dementia) and noncancer primary diagnosis were associated with increased complexity score. The hospital intensive care unit, compared with the general floor, was associated with higher complexity scores. In contrast, outpatient and residence, compared with the general floor, were associated with lower complexity scores.
Conclusion: Patient, disease, and care setting factors known at the time of specialty palliative care consultation request are associated with level of complexity, and they may inform teams about the right service provisions, including time and expertise, required to meet patient needs.
BACKGROUND: There is a paucity of data to predict early death or futility after trauma. The objective of this study was to characterize the laboratory values, blood product administration, and hospital disposition for patients with trauma who died within 72 h of admission.
METHODS: All deaths within 72 h of admission over a 5-y period at a level I trauma center were reviewed. Blood transfusion within the first 4 h of arrival and patient disposition from the emergency department to the operating room (OR), surgical intensive care unit, or the neuroscience intensive care unit (NSICU) were analyzed. Kaplan-Meier curves were generated to determine time to death.
RESULTS: A total of 622 subjects were identified; 39.5% died in the emergency department, 10.6% went directly to the OR, 13.6% were admitted to the surgical intensive care unit, and 29.7% admitted to the NSICU. Of these subjects, 201 (32.2%) patients received blood within the first 4 h. By 24 h, early blood transfusion was associated with more rapid death for patients who were admitted to the NSICU (80% versus 60% mortality, P = 0.01) but not for patients taken directly to the OR (80% versus 70% mortality, P = 0.2). Admission coagulopathy by international normalized ratio (P < 0.01), but not anemia (P = 0.64) or acidosis (P = 0.45), correlated with a shorter time to death. In contrast, laboratory values obtained at 4 h after admission did not correlate with time to death.
CONCLUSIONS: Our data demonstrate that admission coagulation derangement and need for early blood product transfusion are the two factors most associated with early death after injury, particularly in those patients with traumatic brain injury. These data will help construct future models for futility of continued care in patients with trauma.
Conducting palliative care research can be personally and professionally challenging. While limitations in funding and training opportunities are well-described, a less recognized barrier to successful palliative care research is creating a sustainable and resilient team. In this special report, we describe the experience and lessons-learned in a single palliative care research lab. In the first few years of the program, 75% of staff quit, citing burnout and the emotional tolls of their work. To address our sustainability, we translated resilience theory to practice. First, we identified and operationalized shared mission and values. Next, we conducted a resilience resource needs assessment for both individual team-members and the larger team as a whole, and created a workshop based curriculum to address unmet personal and professional support needs. Finally, we changed our leadership approach to foster psychological safety and shared mission. Since then, no team-member has left and the program has thrived. As the demand for rigorous palliative care research grows, we hope this report will provide perspective and ideas to other established and emerging palliative care research programs.
CONTEXT: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL).
OBJECTIVES: This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs.
METHODS: In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006-2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multi-stage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness.
RESULTS: 110/114 parents responded to open-ended items; 63% (n=69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) prior to death. 71% (n=78/110) had palliative care involvement and 65% (n=69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond 'readiness' for their child's death. Three domains emerged that contributed to parents' lack of preparedness: (1) chronic illness experiences; (2) pretense of preparedness; and (3) circumstances and emotions surrounding their child's death.
CONCLUSIONS: Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond 'readiness.' More research is needed to identify supportive elements among parents facing their child's EOL.
CONTEXT: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understood.
OBJECTIVE: To determine whether modifiable variables are associated with increased hospice nurse comfort with PPHC provision in the community.
METHODS: A cross-sectional survey was developed, pilot-tested, and distributed to hospice nurses across a tristate region to assess nurse training experiences and comfort with PPHC provision. Targeted sub-analyses were conducted to investigate associations between nurse comfort level and clinical, training, and patient frequency variables.
RESULTS: A total of 551 respondents representing 71 hospices across Tennessee, Arkansas, and Mississippi completed surveys. Hospice nurse comfort with provision of care to children was statistically significantly associated with exposure to prior PPHC clinical experiences (p<0.001), receipt of formal pediatric PPHC training (p<0.001), and higher hospice- (p=0.01) and individual-level frequency of PPHC provision (p<0.001). PPHC clinical experience was the most impactful variable with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful variable with respect to comfort with management of severe symptoms at the end of life.
CONCLUSION: Modifiable variables exist that are readily targetable to improve hospice nurse comfort with PPHC provision. These findings should inform the development and investigation of clinical and educational interventions to empower both nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community.
OBJECTIVE: To determine factors associated with the utilization of palliative care (PC) in patients with metastatic gynecologic cancer who died while hospitalized.
METHODS: Data were abstracted from the National Inpatient Sample database for patients with cervical, uterine, and ovarian cancers from 2005 to 2011. Chi-squared and logistic regression models were used for statistical analyses.
RESULTS: Of 4559 women (median age: 65 years; range: 19-102), 1066 (23.4%) utilized PC. Patients were 24.9% low socioeconomic status (SES), 23.9% low-middle, 23.7% middle-high, and 25.1% high SES. Medicare, Medicaid, and private insurance coverage were listed at 46.2%, 37.5%, 11.3% of patients; 36.2%, 21.1%, 18.1%, 24.6% were treated in the South, West, Midwest, and Northeast. Over the 7 year study period, the use of PC increased from 12% to 45%. Older age (odds ratio [OR]: 1.36; 95% CI: 1.11-1.68; P = .003), high SES (OR: 1.41; 95% CI: 1.12-1.78; P = .003), more recent treatment (OR: 9.22; 95% CI: 6.8-12.51; P < .0001), private insurance (OR: 1.81; 95% CI: 1.46-2.25; P < .001), and treatment at large-volume hospitals (OR: 1.36; 95% CI: 1.04-1.77; P = .02), Western (OR: 2.00; 95% CI: 1.61-2.49; P < .001) and Midwestern hospitals (OR: 1.35; 95% CI: 1.08-1.68; P = .001) were associated with higher utilization of PC.
CONCLUSIONS: The use of inpatient PC for patients with gynecologic cancer increased over time. The lower utilization of PC for terminal illness was associated with younger age, lower SES, government-issued insurance coverage, and treatment in Southern and smaller volume hospitals, and warrants further attention.
The COVID-19 crisis has amplified the importance of palliative care to countless patients suffering with and dying from this disease, as well as to their families, communities, and the worldwide cadre of overburdened healthcare workers. Particularly urgent is the need for spiritual care specialists and generalists to address spiritual suffering given the degree of isolation, loneliness, and vulnerability caused by this pandemic. Although spiritual care has long been recognized as one of the domains of quality palliative care, it is often not fully integrated into practice. All disciplines are ultimately responsible for ensuring spiritual care is prioritized to improve quality of life and the experience of patients and families facing spiritual emergencies amid the complex life-and-death scenarios inherent to COVID-19. Although the pandemic has revealed serious fault lines in many healthcare domains, it has also underscored the need to recommit to spiritual care as an essential component of whole-person palliative care.
I had been on the phone with Madeleine's mother for fifteen minutes, and she had sobbed throughout. She pleaded with me, "You won't even let our family visit her together. If you really want to help my daughter, you will let us stay with her." Madeleine, who was twenty-four years old, was dying of end-stage acute myeloid leukemia and was intubated in one of our intensive care units. Her intensivist had requested a clinical ethics consultation for potentially inappropriate medical treatment-in my world of clinical ethics consultation, routine stuff. Except that, in March 2020, nothing was routine anymore. The Covid-19 pandemic calls for creative thinking about ad hoc and post hoc bereavement efforts, and it may result in efforts to revise existing accounts of what constitutes a good death in order to accommodate patients' and families' experiences at the end of life during a pandemic.