Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy.
CONTEXT: The coronavirus disease 2019 (COVID-19) pandemic is stressing health care systems throughout the world. Significant numbers of patients are being admitted to the hospital with severe illness, often in the setting of advanced age and underlying comorbidities. Therefore, palliative care is an important part of the response to this pandemic. The Seattle area and UW Medicine have been on the forefront of the pandemic in the U.S.
METHODS: UW Medicine developed a strategy to implement a palliative care response for a multihospital health care system that incorporates conventional capacity, contingency capacity, and crisis capacity. The strategy was developed by our palliative care programs with input from the health care system leadership.
RESULTS: In this publication, we share our multifaceted strategy to implement high-quality palliative care in the context of the COVID-19 pandemic that incorporates conventional, contingency, and crisis capacity and focuses on the areas of the hospital caring for the most patients: the emergency department, intensive care units, and acute care services. The strategy focuses on key content areas, including identifying and addressing goals of care, addressing moderate and severe symptoms, and supporting family members.
CONCLUSION: Strategy planning for delivery of high-quality palliative care in the context of the COVID-19 pandemic represents an important area of need for our health care systems. We share our experiences of developing such a strategy to help other institutions conduct and adapt such strategies more quickly.
Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.
Objective: To explore the experiences of caregivers who supported a patient through VSED.
Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.
Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.
Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.
The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
The purpose of this article is to describe the lessons learned in the course of a 5-year research study on a palliative care intervention for persons on a Phase 1 clinical trial. Patients who are participating in Phase 1 trials and the families who care for them may be especially vulnerable and require special attention. The patients are generally experiencing the effects of advanced disease, and they also may soon experience unknown side effects, intense treatment regimens, and the emotional stress of an uncertain future as a result of clinical trial participation. Oncology nurses in all roles including clinical trials/research nurses, clinicians, educators, and advanced practice registered nurses play a critical role in addressing the quality-of-life concerns in this population. Palliative care can provide better symptom control and information on treatment options and facilitate a better understanding of patient/family goals. Attending to these factors can ultimately mean improved survival for the advanced cancer patient, and support for these patients can assist in advancing the field of oncology as these investigational therapies hold the promise for enhancing survival.
CONTEXT: Patients with cancer face symptoms due to disease and treatment, and pain is common and complex. The opioid crisis may complicate patients' and clinicians' experiences of managing pain in cancer care.
OBJECTIVES: In our study of perceptions and experiences with palliative care at an outpatient cancer center, we examined communication around symptom management throughout cancer care, and pain and its management emerged as particularly salient. The objective of this paper is to describe, from the perspectives of patients, caregivers, and oncology healthcare professionals, the role of palliative care in navigating the complicated dynamics of pain management amidst the opioid crisis.
METHODS: A qualitative descriptive study with grounded theory components was designed to investigate experiences with and perceptions of specialist palliative care and symptom management, including pain. Interviews were audio-recorded and transcribed, and focused coding identified themes related to pain and pain management from all three perspectives.
RESULTS: 44 patients, caregivers, and non-palliative care healthcare professionals completed interviews. Patients with cancer and their caregivers had many concerns about pain management and were specifically concerned about opioid use and stigma. For patients, palliative care improved pain management and helped to de-stigmatize appropriate pain management. Oncology clinicians reported that partnering with palliative care facilitated complex pain management and also provided moral support around difficult opioid recommendations for patients.
CONCLUSION: Palliative care offers the potential to uniquely support both patients and other oncology professionals in optimally navigating the complexity around pain management for cancer care in the midst of the opioid crisis.
Background: The medical profession increasingly recognizes the growing need to educate nonpalliative physicians in palliative care.
Objective: This study aims to provide a scoping review of the primary palliative care (PPC) education currently available to graduate medical trainees in primary and specialty tracks.
Design: Studies of PPC interventions in U.S. residency or fellowship programs of all subspecialties published in English and listed on MEDLINE, CINAHL, and EMBASE through January 2020 were included. To meet admission criteria, studies had to describe the content, delivery methods, and evaluation instruments of a PPC educational intervention.
Results: Of 233 eligible full texts, 85 studies were included for assessment, of which 66 were novel PPC educational interventions and 19 were standard education. Total number of publications evaluating PPC education increased from 8 (2000-2004) to 36 (2015-2019), across 11 residency and 10 fellowship specialties. Residency specialties representing the majority of publications were emergency medicine, general surgery, internal medicine, and pediatric/medicine-pediatrics. PPC content domains most taught in residencies were communication and symptom management; the primary delivery method was didactics, and the outcome assessed was attitudes. Fellowship specialties representing the majority of publications were pediatric subspecialties, nephrology, and oncology. The PPC content domain most taught in fellowships was communication; the primary delivery method was didactics and the outcome evaluated was attitudes.
Conclusions: While PPC education has increased, it remains varied in content, delivery method, and intervention evaluations. Future studies should include more widespread evaluation of behavioral outcomes, longitudinal persistence of use, and clinical impact.
BACKGROUND: Studies have shown gaps in prognostic understanding among patients with cancer. However, few studies have explored patients' perceptions of their treatment goals versus how they perceive their oncologist's goals, and the association of these views with their psychological distress.
METHODS: We conducted a cross-sectional study of 559 patients with incurable lung, gastrointestinal, breast, and brain cancers. The Prognosis and Treatment Perception Questionnaire was used to assess patients' reports of their treatment goal and their oncologist's treatment goal, and the Hospital Anxiety and Depression Scale was used to assess patients' psychological symptoms.
RESULTS: We found that 61.7% of patients reported that both their treatment goal and their oncologist's treatment goal were noncurative, whereas 19.3% reported that both their goal and their oncologist's goal were to cure their cancer, 13.9% reported that their goal was to cure their cancer whereas their oncologist's goal was noncurative, and 5% reported that their goal was noncurative whereas their oncologist's goal was curative. Patients who reported both their goal and their oncologist's goal as noncurative had higher levels of depression (B=0.99; P=.021) and anxiety symptoms (B=1.01; P=.015) compared with those who reported that both their goal and their oncologist's goal was curative. Patients with discordant perceptions of their goal and their oncologist's goal reported higher anxiety symptoms (B=1.47; P=.004) compared with those who reported that both their goal and their oncologist's goal were curative.
CONCLUSIONS: One-fifth of patients with incurable cancer reported that both their treatment goal and their oncologist's goal were to cure their cancer. Patients who acknowledged the noncurative intent of their treatment and those who perceived that their treatment goal was discordant from that of their oncologist reported greater psychological distress.
Background: Research on what children wished they had done differently after their sibling's death has not been reported.
Objective: Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death.
Design: Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.
Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white).
Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used.
Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope.
Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
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.
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.