BACKGROUND: Although the culture in burns/critical care units is gradually evolving to support the delivery of palliative/end of life care, how clinicians experience the end of life phase in the burn unit remains minimally explored with a general lack of guidelines to support them.
AIM: To explore the end of life care experiences of burn care staff and ascertain how their experiences can facilitate the development of clinical guidelines.
DESIGN: Interpretive-descriptive qualitative approach with a sequential two phased multiple data collection strategies was employed (face to face semi-structured in-depth interviews and follow-up consultative meeting). Thematic analysis was used to analyze the data.
SETTING/PARTICIPANTS: The study was undertaken in a large teaching hospital in Ghana. Twenty burn care staff who had a minimum of 6 months working experience completed the interviews and 22 practitioners participated in the consultative meeting.
RESULTS: Experiences of burn care staff are complex with four themes emerging: (1) evaluating injury severity and prognostication, (2) nature of existing system of care, (3) perceived patient needs, and (4) considerations for palliative care in burns. Guidelines in this regard should focus on facilitating communication between the patient and family and staff, holistic symptom management at the end of life, and post-bereavement support for family members and burn care practitioners.
CONCLUSIONS: The end of life period in the burn unit is poorly defined coupled with prognostic uncertainty. Collaborative model of practice and further training are required to support the integration of palliative care in the burn unit.
For critically ill burn patients without a next of kin, the medical team is tasked with becoming the surrogate decision maker. This poses ethical and legal challenges for burn providers. Despite this frequent problem, there has been no investigation of how the presence of a next of kin affects treatment in burn patients. To evaluate this relationship, a retrospective chart review was performed on a cohort of patients who died during the acute phase of their burn care. Variables collected included age, gender, length of stay, total body surface area, course of treatment, and presence of a next of kin. In total, 67 patients met inclusion criteria. Of these patients, 14 (21%) did not have a next of kin involved in medical decisions. Patients without a next of kin were significantly younger (p=.02), more likely to be homeless (p<.01), had higher total body surface area burns (p=.008), had shorter length of stay (p<.001), and were 5 times less likely to receive comfort care (p=.01). Differences in gender and ethnicity were not statistically significant. We report that patients without a next of kin present to participate in medical decisions are transitioned to comfort care less often despite having a higher burden of injury. This disparity in standard of care demonstrates a need for a cultural shift in burn care to prevent suffering of these marginalized patients. Burn providers should be empowered to reduce suffering when no decision maker is present.
Trauma is widespread, and its symptoms can adversely impact wellbeing at end of life, a time when hospice seeks to maximize quality of life. This article reviews research on trauma at end of life, provides an overview of trauma-informed principles, and explores possibilities for applying trauma-informed care through an illustrative case study of a patient at end of life. The case discussion applies findings from the literature using Feldman's Stepwise Psychosocial Palliative Care model as a roadmap. As shown in the case study, trauma-related symptoms may complicate care, making it an important subject of clinical attention for interdisciplinary hospice team members. As part of this team, social workers are particularly well suited to provide more targeted interventions where indicated, though all members of the team should take a trauma-informed approach. Lastly, this article reflects on the need for organizations to take a systems-level approach when implementing trauma-informed care and suggests implications for practice through a universal approach to trauma and the need for trauma-specific assessments and interventions at end-of-life, along with areas for future research.
Background: In 2017, the American College of Surgeons' Trauma Quality Improvement Program adopted a Palliative Care Best Practices Guidelines that calls for early palliative care for hospitalized injured patients.
Objective: To develop an educational intervention to address the palliative needs of injured patients.
Design: Palliative faculty presented a three-part monthly lecture series focused on core primary palliative skills, including the components of palliative care; conducting family conferences; communication skills for complex medical decision making; pain management; and, end-of-life planning. Additionally a palliative provider joined trauma team rounds every other week to highlight opportunities for enhanced palliative assessments, identify appropriate consults, and provide just-in-time teaching.
Setting: Urban, level-1 trauma center.
Measurements: Surgical residents completed a survey at the beginning and end of the academic year, during which the intervention took place. All survey questions were answered with a 5-point Likert scale. Rate of palliative care consultation was also tracked.
Results: There were statistically significant perceived improvements in goals-of-care discussions (initial discussion—4.30 vs. 3.52, p = 0.4; follow-up discussion—3.89 vs. 3.05, p = 0.021) and documentation (3.89 vs. 2.9, p = 0.032), incorporation of patient preferences into decision making (4.20 vs. 3.43, p = 0.04), discussion of palliative needs during rounds (4.30 vs. 2.81; p < 0.001) and care transitions (3.90 vs. 3.05, p = 0.008), respect for decisions to forgo life-sustaining treatments (4.40 vs. 3.52, p = 0.004), and identification of advance directives (4.11 vs. 3.05, p = 0.002) and surrogate decision maker (4.44 vs. 3.60, p = 0.015). The overall rate of palliative specialist consultation also increased (8.4% vs. 16.1%, p < 0.001).
Conclusion: Embedding primary palliative education into usual didactic and rounding time for an inpatient trauma team is an effective way to help residents develop palliative skills and foster culture change. Educational partnerships such as this may serve as an example to other trauma programs.
INTRODUCTION: Both solid organ transplant candidates and recipients and their family caregivers have complex care needs and may benefit from palliative care. But palliative care is not often considered as part of transplant care despite palliative care being promoted as an important component of transplant care both before and after solid organ transplantation. Further, the current state of the science of palliative care in solid organ transplantation has not been well-documented.
OBJECTIVE: To describe the state of the science of palliative care in solid organ transplant and identify gaps in the literature.
METHODS: Four electronic databases were searched using controlled vocabulary words and synonymous free text to find articles on palliative care and solid organ transplant. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and checklist were also used.
RESULTS: Twenty articles were included in the final review for synthesis, 18 of which involved transplants for adults only. Twelve articles described palliative care for patients before transplant, four articles examined palliative care for patients after transplant, primarily at the end-of-life, and four articles described transplant provider perspectives on palliative care. The reviewed evidence suggested that patients could be benefited by palliative care both pre and posttransplant, particularly for symptom management and advance care planning and that transplant providers faced many barriers to implementing palliative care in practice.
DISCUSSION: There is limited research on palliative care following solid organ transplantation, particularly outside of hospice care. Much of the prior research on this topic has described adult patients.
BACKGROUND: The general in-hospital mortality and interrelationship with delirium are vastly understudied. Therefore, this study aimed to assess the rates of in-hospital mortality and terminal delirium.
METHOD: In this prospective cohort study of 28,860 patients from 37 services including 718 in-hospital deaths, mortality rates and prevalence of terminal delirium were determined with simple logistic regressions and their respective odds ratios (ORs).
RESULTS: Although overall in-hospital mortality was low (2.5%), substantial variance between services became apparent: Across intensive care services the rate was 10.8% with a 5.8-fold increased risk, across medical services rates were 4.4% and 2.4-fold, whereas at the opposite end, across surgical services rates were 0.7% and 87% reduction, respectively. The highest in-hospital mortality rate occurred on the palliative care services (27.3%, OR 19.45). The general prevalence of terminal delirium was 90.7% and ranged from 83.2% to 100%. Only across intensive care services (98.1%, OR 7.48), specifically medical intensive care (98.1%, OR 7.48) and regular medical services (95.8%, OR 4.12) rates of terminal delirium were increased. In contrast, across medical services (86.4%, OR 0.32) and in particular oncology (73.9%, OR 0.25), pulmonology (72%, OR 0.31) and cardiology (63.2%, OR 0.4) rates were decreased. For the remaining services, rates of terminal delirium were the same.
SIGNIFICANCE OF RESULTS: Although in-hospital mortality was low, the interrelationship with delirium was vast: most patients were delirious at the end of life. The implications of terminal delirium merit further studies.
Ensuring burn patients get appropriate care without pursuing futile treatment has always constituted a challenging balance for burn surgeons. Patients with no prospect of cure who eventually die should potentially experience more comfortable and peaceful end-of-life (EoL) care. Recognizing that death for some patients is inevitable and can only be postponed but not avoided would open the way to a more humane comfort care for such patients. Though comfort EoL services are still not universal in burns intensive care units (ICU) and disparities still exist in access, and use of palliative care appears underutilized, its integration in the burns ICU has increased over the past decade with undeniable benefits. Palliative care consultations should be considered in select burn patients for whom survival is highly unlikely.
Background: Traumatic events are sudden, unexpected, and often devastating. The delivery of difficult news to patients and families in the trauma setting has unique challenges that necessitate communication skills that may differ from those used in other clinical environments.
Objective: Design and implement a novel curriculum to teach, assess, and provide feedback to trauma residents on the communication skills necessary for delivering difficult news to patients and families in the trauma setting.
Methods: This communication curriculum was delivered in three separate phases: (1) didactics using a video education e-module, (2) simulated practice of trauma resuscitation with a high-fidelity mannequin followed by role play of delivering difficult news, (3) an observed skills assessment using standardized patients (SPs). Each phase focused on delivery of difficult news of death and of uncertain/poor prognosis after a resuscitation in the trauma bay. Learners were trauma residents that included postgraduate year (PGY) 1-2 general surgery residents and PGY 1-4 emergency medicine residents at a level 1 trauma center. Outcomes include resident comfort, knowledge, and confidence in delivering difficult news in the trauma setting.
Results: Thirty-nine trauma residents participated in the three-phase curriculum. There was an increase in the mean scores of resident-reported comfort, knowledge, and confidence in delivering difficult news for the seriously injured. SPs rated 78% of residents as competent to perform delivery of difficult news in the trauma bay independently.
Conclusions: A curriculum to teach and assess trauma residents in the skills necessary to deliver difficult news in the trauma setting is both feasible and effective.
BACKGROUND: Hospital palliative care is an essential part of the COVID-19 response, but relevant data are lacking. The recent literature underscores the need to implement protocols for symptom control and the training of non-specialists by palliative care teams.
AIM: The aim of the study was to describe a palliative care unit's consultation and assistance intervention at the request of an Infectious Diseases Unit during the COVID-19 pandemic, determining what changes needed to be made in delivering palliative care.
DESIGN: This is a single holistic case study design using data triangulation, for example, audio recordings of team meetings and field notes.
SETTING/PARTICIPANTS: This study was conducted in the Palliative Care Unit of the AUSL-IRCCS hospital of Reggio Emilia, which has no designated beds, consulting with the Infectious Diseases Unit of the same hospital.
RESULTS: A total of 9 physicians and 22 nurses of the Infectious Diseases Unit and two physicians of the Palliative Care Unit participated in the study.Our Palliative Care Unit developed a feasible 18-day multicomponent consultation intervention. Three macro themes were identified: (1) new answers to new needs, (2) symptom relief and decision-making process, and (3) educational and training issues.
CONCLUSION: From the perspective of palliative care, some changes in usual care needed to be made. These included breaking bad news, patients' use of communication devices, the limited time available for the delivery of care, managing death necessarily only inside the hospital, and relationships with families.
Palliative care has been shown to improve quality of life, symptom, and caregiver burden for a range of life-limiting diseases. Palliative care use among patients with severe dermatologic disease remain relatively unexplored, but the limited available data suggest significant unmet care needs and low rates of palliative care utilization. This review summarizes current palliative care patterns in dermatology, identifying areas for improvement and future investigation.
End-of-life (EOL) care has become an integral part of intensive care medicine and includes the exploration of possibilities for deceased organ and tissue donation. Donation physicians are specialist doctors with expertise in EOL processes encompassing organ and tissue donation, who contribute significantly to improvements in organ and tissue donation services in many countries around the world. Donation physicians are usually also intensive care physicians, and thus they may be faced with the dual obligation of caring for dying patients and their families in the intensive care unit (ICU), whilst at the same time ensuring organ and tissue donation is considered according to best practice. This dual obligation poses specific ethical challenges that need to be carefully understood by clinicians, institutions and health care networks. These obligations are complementary and provide a unique skillset to care for dying patients and their families in the ICU. In this paper we review current controversies around EOL care in the ICU, including the use of palliative analgesia and sedation specifically with regards to withdrawal of cardiorespiratory support, the usefulness of the so-called doctrine of double effect to guide ethical decision-making, and the management of potential or perceived conflicts of interest in the context of dual professional roles.
Objectives: To measure trauma patient and caregiver satisfaction before and after implementation of standardised palliative care (PC) guidelines.
Methods: Prospective pre–post study at two level-I trauma centres. PC satisfaction surveys were administered prior to discharge for consented trauma patients (Family Satisfaction with Advanced Cancer Scale, Patient (FAMCARE-P13) survey)=55 years, and their caregivers (FAMCARE survey), from 1 November 2016 to 30 November 2018. Standardised PC guidelines were implemented January 2018 and included consultations, prognostication assessments, identification of proxies, review of advanced directives and do not resuscitate orders within 24 hours of admission, while advanced goals of care, formal family meetings and spiritual care support were recommended within 72 hours of admission. Generalised linear models were used to determine whether differences in patient or caregiver satisfaction existed pre versus post implementation.
Results: There were 572 patients (299 pre; 273 post) and 595 caregivers (334 pre; 261 post) included. Overall patient satisfaction significantly increased post implementation (82.0 vs 86.0, p=0.001). After adjustment, the implementation of the guidelines was an independent predictor of higher overall patient satisfaction (least squares mean (LSM= (83.8% (95%CI 81.2%-86.5%) vs 80.3% (77.7%-82.9%), p=0.003)). Compared with preimplementation, patient satisfaction was significantly higher post implementation in the following domains: information giving (80.9 vs 85.5, p=0.001), followed by physical care (82.2 vs 86.0, p=0.002), availability of care (83.4 vs 86.8, p=0.007) and psychosocial care (84.7 vs 87.6, p=0.04). No significant differences in caregiver satisfaction were found before or after adjustment (LSMpre: 83.1% (95%CI 80.9%-85.3%) vs. post: 82.4% (80.3%-84.5%), p=0.56))
Conclusions: Our data suggest that the implementation of PC guidelines significantly improved patient satisfaction following traumatic injury, while maintaining robust caregiver satisfaction.
BACKGROUND: There is a gap in knowledge about the kind and quality of care experienced by hospital patients at the end of their lives.
AIMS: To document and compare the patterns in end-of-life care for patients dying across a range of different medical units in an acute care hospital.
METHODS: A retrospective observational study of consecutive adult inpatient deaths between 1 July 2010 and 30 June 2014 in four different medical units of an Australian tertiary referral hospital was performed. Units were selected on the basis of highest inpatient death rates and included medical oncology, respiratory medicine, cardiology and gastroenterology/hepatology.
RESULTS: Overall, 41% of patients died with active medical treatment plans, but significantly more respiratory and cardiology patients died with ongoing treatment (46 and 75% respectively) than medical oncology and gastroenterology patients (each 27%, P < 0.05). More medical oncology and gastroenterology patients were recognised as dying (92 and 88%) compared with 72% of respiratory and only 38% of cardiology patients (P < 0.001). Significantly, more medical oncology patients were referred to palliative care and received comfort care plans than all other patient groups. However, the rate of non-palliative interventions given in the final 48 h was not significantly different between all four groups.
CONCLUSIONS: There were differences in managing the dying process between all disciplines. A possible solution to these discrepancies would be to create an integrated palliative care approach across the hospital. Improving and reducing interdisciplinary practice variations will allow more patients to have a high-quality and safe death in acute hospitals.
Radiation therapy (RT) can effectively palliate a variety of symptoms in patients with metastatic cancer, using relatively low doses that infrequently cause major side effects. However, palliative radiation is often underutilized and sub-optimally implemented. In this study, we surveyed the Society of Palliative Radiation Oncology (SPRO) membership to identify barriers to appropriate referral for palliative RT that they encounter in their practice, and identify specific groups of physicians who radiation oncologists believed would benefit most from further education on when to refer patients. A total of 28 radiation oncologists responded to the survey with a response rate of 20.5%. On average, participants felt that referrals for palliative RT were inappropriately delayed 46.5% [standard deviation (STD) 20.2%] of the time. The most common barrier to referral for medical oncologists was thought to be potential interference with systemic therapy (33%); for primary care physicians and surgeons it was a lack of knowledge about the benefit (42%), and for palliative care physicians it was concern for patient convenience (25%). For brain metastases and spinal cord compression radiation oncology was felt to be part of the initial referral sequence more than 50% of the time, but less so for thoracic airway obstruction/bleeding (38%), esophageal obstruction (16%), or urinary obstruction/bleeding (8%), where another subspecialist was more often consulted first. Primary care, geriatric medicine, and emergency medicine were considered among the least knowledgeable specialties about palliative radiation. These hypothesis-generating findings can guide approaches to improve referral patterns for this important aspect of supportive care.
Thanks to the efforts of many individuals and organizations, the field of Hospice and Palliative Medicine (HPM) has undergone unprecedented growth over the last two decades. To meet the needs of seriously ill patients and families in inpatient, outpatient community setting in the future, the field of HPM must develop innovative strategies to expand the specialist workforce pipeline. With 148 programs participating in the National Residency Matching Program and 285 matched applicants in 2019, the specialty of HPM can barely replace those who are retiring or leaving the field. We call for a renewed and coordinated effort to increase the applicant pool for HPM fellowship positions, as well as greater access to specialist HPM training through expanded traditional fellowship programs and innovative specialist training pathways. Without such an expansion, our specialty will struggle to serve those patients and families who need us most.
Background: Investigators have tested interventions delivered by specialty palliative care (SPC) clinicians, or by clinicians without palliative care specialization (primary palliative care, PPC).
Objective: To compare the characteristics and outcomes of randomized clinical trials (RCTs) of SPC and PPC interventions.
Design: Systematic review secondary analysis.
Setting/Subjects: RCTs of palliative care interventions.
easurements: Interventions were classified SPC if delivered by palliative care board-certified or subspecialty trained clinicians, or those with extensive clinical experience; all others were PPC. We abstracted data for each intervention: delivery setting, delivery clinicians, outcomes measured, trial results, and Cochrane's Risk of Bias. We conducted narrative synthesis for quality of life, symptom burden, and survival.
esults: Of 43 RCTs, 27 tested SPC and 16 tested PPC interventions. SPC interventions were more comprehensive (4.2 elements of palliative care vs. 3.1 in PPC, p = 0.02). SPC interventions were delivered in inpatient (44%) or outpatient settings (52%) by specialty physicians (44%) and nurses (44%); PPC interventions were delivered in inpatient (38%) and home settings (38%) by nurses (75%). PPC trials were more often of high risk of bias than SPC trials. Improvements were demonstrated on quality of life by SPC and PPC trials and on physical symptoms by SPC trials.
Conclusions: Compared to PPC, SPC interventions were more comprehensive, were more often delivered in clinical settings, and demonstrated stronger evidence for improving physical symptoms. In the face of SPC workforce limitations, PPC interventions should be tested in more trials with low risk of bias, and may effectively meet some palliative care needs.
Objective: This study aimed to achieve consensus regarding what distinguishes specialist from non-specialist palliative care to inform service organisation and delivery to patients with life-limiting conditions.
Methods: A three-phase Delphi study was undertaken, involving qualitative interviews and two questionnaire cycles. Thirty-one clinicians (nurses, doctors and social workers) working with a wide range of patients participated in interviews, of whom 27 completed two questionnaire cycles.
Results: Consensus was gained on 75 items that define specialist palliative care and distinguish it from non-specialist palliative care. Consensus was gained that specialist palliative care clinicians have advanced knowledge of identifying dying, skills to assess and manage complex symptoms to improve quality of life, have advanced communication skills and perform distinct clinical practices (e.g. working with the whole family as the unit of care and providing support in complex bereavement). Non-specialist palliative care involves discussions around futile or burdensome treatments, and care for people who are dying.
Conclusions: Areas of connection were identified: clinicians from disease-specific specialties should be more involved in leading discussions on futile or burdensome treatment and providing care to people in their last months and days of life, in collaboration with specialists in palliative care when required. What is known about the topic? At present there is no evidence-based definition or agreement about what constitutes specialist palliative care (as opposed to palliative care delivered by non-specialists) in the Australian Capital Territory. An agreed definition is needed to effectively determine the workforce required and its clinical skill mix, and to clarify roles and expectations to mitigate risks in not adequately providing services to patients with life-limiting conditions.
BACKGROUND: Despite its established benefits, palliative care (PC) is rarely utilized for hematopoietic stem cell transplant (HSCT) patients. We sought to examine transplant physicians' perceptions of PC.
METHODS: We conducted a cross-sectional survey of transplant physicians recruited from the American-Society-for-Blood-and-Marrow-Transplantation. Using a 28-item questionnaire adapted from prior studies, we examined physicians' access to PC services, and perceptions of PC. We computed a composite score of physicians' attitudes about PC (mean = 16.9, SD = 3.37) and explored predictors of attitudes using a linear mixed model.
RESULTS: 277/1005 (28%) of eligible physicians completed the questionnaire. The majority (76%) stated that they trust PC clinicians to care for their patients, but 40% felt that PC clinicians do not have enough understanding to counsel HSCT patients about their treatments. Most endorsed that when patients hear the term PC, they feel scared (82%) and anxious (76%). Nearly half (46%) reported that the service name ‘palliative care’ is a barrier to utilization. Female sex (ß = 0.85, P = .024), having <10 years of clinical practice (ß = 1.39, P = .004), and perceived quality of PC services (ß = 0.60, P < .001) were all associated with a more positive attitude towards PC. Physicians with a higher sense of ownership over their patients’ PC issues (ß = -0.36, P < .001) were more likely to have a negative attitude towards PC.
CONCLUSIONS: The majority of transplant physicians trust PC, but have substantial concerns about PC clinicians' knowledge about HSCT and patients' perception of the term 'palliative care'. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for HSCT recipients.
Nous projetons aujourd'hui nos fantasmes de toute-puissance sur la médecine en lui conférant le pouvoir de gérer notre vie dans toutes ses dimensions, et donc pourquoi pas la mort ? La médecine palliative peine néanmoins à se faire reconnaître en tant que spécialité médicale capable de "gérer" la mort. C'est plutôt une bonne nouvelle, dans la mesure où ce sont précisément les dysfonctionnements qui préservent l'homme de la tentation de se croire/vouloir tout puissant.
A growing body of social science literature is devoted to describing processes of biomedicalization. The issue of biomedicalization is especially relevant for individuals suffering from end-stage cancer and hoping that aggressive end-of-life interventions, which are riddled with uncertainty around quantity or quality of life, will produce a 'cure'. To examine hospice underutilization among end-stage cancer patients, we apply the anthropological concept 'political economy of hope,' which describes how personal and collective 'hope' is associated with the political and economic structures that produce biomedicalization processes. Previous studies have examined hospice underutilization among end-stage cancer patients and have identified barriers stemming from patient and physician characteristics or health insurance reimbursement policies. Yet, these studies do not provide an organized synthesis of how barriers articulate, how they are part of the longitudinal decision-making process, or describe the sociocultural context surrounding hospice care enrollment decisions. This paper focuses on US-specific mechanisms and is based on qualitative, in-depth, interviews with physicians at an academic hospital (N = 24). We find that hospice underutilization results from a web of interconnected constraints surrounding end-stage cancer patients. Our research reveals how hospice care contradicts the political and economic structures associated with end-stage cancer care and illustrates how end-stage cancer patients are transformed into a form of biovalue, a fundamental commodity sustaining the political economy of hope.