Visions at Life’s End: Normalising and Validating Distressing End-of-Life Experiences – A Case Report

Cancer and palliative care in Africa.

The rising trend of chronic life-threatening illnesses is accompanied by an exponential increase in serious health-related suffering. Palliative care is known to ameliorate physical and psychosocial suffering and restore quality of life. However, the contemporary challenges of palliative care delivery, such as changing demographics, social isolation, inequity in service delivery, and professionalisation of dying, have prompted many to adopt a public health approach to palliative care delivery. A more decentralised approach in which palliative care is integrated into primary care will ensure that the care is available locally to those who need it and at a cost that they can afford. General practitioners (GPs) play a pivotal role in providing primary palliative care in the community. They ensure that care is provided in alignment with patients’ and their families’ wishes along the trajectory of the life-threatening illness and at the patient’s preferred place. GPs use an interdisciplinary approach by collaborating with specialist palliative care teams and other healthcare professionals. However, they face challenges in providing end-of-life care in the community, which include identification of patients in need of palliative care, interpersonal communication, addressing patients’ and caregivers’ needs, clarity in roles and responsibilities between GPs and specialist palliative care teams, coordination of service with specialists and lack of confidence in providing palliative care in view of deficiencies in knowledge and skills in palliative care. Multiple training formats and learning styles for GPs in end-of-life care have been explored across studies. The research has yielded mixed results in terms of physician performance and patient outcomes. This calls for more research on GPs’ views on end-of-life care learning preferences, as this might inform policy and practice and facilitate future training programs in end-of-life care.

Extract Palliative care in the emergency department? What is that? This question is often asked among emergency department colleagues and peers—much less so now than in the past. While it has been nearly two decades since palliative care in the emergency department setting became a focus of study and organized implementation of optimal palliative care delivery, emergency clinicians have always faced caring for patients of all ages with serious, life-threatening, and advanced illness in the emergency department. It was not until the evolution of the practice of hospital-based palliative care that a real appreciation developed by those within and outside of the emergency department, setting the real and potential impact that providers in the emergency department with optimized palliative care knowledge and skill might have on the care of patients with serious illness. Over these two decades, the emergency department–specific and wider palliative care literature has burgeoned to demonstrate improved models of palliative care within and outside of the emergency department with a concomitant burgeoning evidence base. This evidence curve will continue to evolve with care in the emergency department increasingly as a focus. Over the last decade, study after study now has shown that patients who receive palliative care in the emergency setting with and without a palliative care subspecialty consultant have improved clinical outcomes with better symptom management, improved goal concordant care, and more effective resource utilization that delivers improved patient-centered outcomes. Palliative care is now widely known as the physical, spiritual, psychological, and social care provided from diagnosis to death or cure of a life-threatening illness provided at any stage of illness and in any setting. Palliative care in the emergency department is fundamentally meeting a seriously ill patient and family wherever they are, be it in pain or in cardiac arrest, and providing the best care possible—not only focused on disease reversal. Palliative care in the emergency setting is the clinician formulating a multidimensional assessment that includes mitigation of suffering and distress in all its forms. For some patients that might require not just an assessment of what can be done but what should be done based on the patient and families’ goals and values. Sometimes this might include breaking bad news or helping mitigate severe breathlessness while also treating sepsis and much more. The lynchpin to effective palliative care in the emergency department is the emergency clinician.

AimThe aim of this study was to explore postgraduate palliative care nursing students’ experiences with simulation-based learning focusing on communication skills, as a learning method in palliative care education. BackgroundCommunication is one of several important competencies in palliative care and found to be challenging. Developing appropriate communication skills in palliative care requires education and practice. To provide postgraduate palliative care nursing students with the required knowledge and experience, practical and active learning approaches, such as simulation-based learning, can be applied. Several studies have explored undergraduate nursing students’ experiences with simulation-based learning in palliative care. However, to our knowledge no studies have explored postgraduate palliative care nursing students` experiences with simulation-based learning focusing on communication skills in palliative care education. DesignAn exploratory descriptive design. MethodsA qualitative method was employed. Three focus group interviews were conducted in May 2022 using videoconferencing (Zoom) with 11 postgraduate palliative care nursing students, eight of whom wrote reflective notes. Data were analysed using systematic text condensation. ResultsThree categories were identified in the data analysis: 1) from uncertain expectations to the real experience of simulation-based learning; 2) being a skilled professional in everyday life versus being observed in the scenarios; and 3) the balance between self-confidence and challenges in experiencing professional development and mastery. ConclusionsPostgraduate palliative care nursing students seemed to experience anxiety towards simulation-based learning in palliative care education, as well as variable expectations for the approach. This could be due to their unfamiliarity with the learning method. The need for repetition was underlined and the students indicated that they would like to be able to participate in several simulation sessions to familiarise themselves with the approach. The contrast between being a skilled professional in everyday life and the pressure of being observed and judged in the scenarios was an important finding. Students outlined the desire to feel safe, but also highlighted the importance of being challenged to experience professional development and enhanced mastery. Generally, the findings indicate that academic and psychological safety should be a focus during simulation-based learning and instructors should understand that students may have varied learning strategies, divergent learning experiences and shifting beliefs in their own competencies.

Public Awareness and Perceptions of Palliative and Comfort Care

Purpose - to study modern views, advanced world and national experience in training medical personnel for palliative care. Materials and methods. Recommendations of international organizations, domestic regulations on palliative care, curricula of medical universities and colleges. Results. It is established that the definition of «Palliative Care» and the levels of its provision, regulated by the current legislation of Ukraine, do not correspond to modern international approaches. The National curricula on palliative care developed by us on the principle of vertical integration and approved by the Ministry of Health in 2014, nowadays, in the era of transition to full autonomy of universities, is outdated. There is no medical specialty «palliative care» in Ukraine. Medical specialists can acquire knowledge and skills in palliative care only within the framework of their continuous professional development at the postgraduate level. According to an EAPC White Paper on Palliative Care Education, the three-level system of medical education based on core competencies and core constituents of palliative care is offer. Conclusions. The system of medical education in Ukraine requires correction in order to acquirement core competencies of palliative care by all medical workers. No conflict of interests was declared by the authors.

Adolescents are a distinct group in paediatric and adult cancer and palliative care specialities. The process that is experienced by the patient and his/her family of the transition from health to living with a life-threatening illness and from a life-threatening to a life-limited illness raises specific issues for service provision. The adolescent population presents with a wide variety of physical and emotional maturity that highlights the need for health professionals to be equipped with skills in adolescent care, cancer care and specialist palliative care. Due to the small number of patients who will require such a service in any one health district in the UK this is not usually realistic. This article discusses a model of care that promotes collaborative professional practice in a cancer centre between the paediatric department and adult specialist palliative care team that in turn extends a philosophy of care into cancer units and the community setting.

Since the death rate in the UK population is approximately 100%, it seems reasonable that approximately 100% of healthcare professionals should have a sane attitude towards death and dying and some knowledge and skills in dealing with patients who experience the inevitable challenges, physical, psychological, emotional and spiritual. The depths of knowledge and skill required will depend on the kind of health professional. Those who deal with death and dying only infrequently will require only a basic knowledge of palliative care: others, such as those training to be specialists in palliative care or in palliative medicine, will undergo a lengthy educational programme, in the UK four years. Whichever category healthcare workers fall into, there is always likely to be a training element of one form or another. Administrative and clerical staff in every health setting should learn how to cope with distressed relatives and families; healthcare staff in hospitals and the community need to understand basic symptom control and have good communication skills. Senior nurses and doctors in palliative care may need to gain higher degrees, undergo accredited training and be able to participate in continuing professional development at all levels. However, more important than any of this is conveying the ethos, at the start of training, that palliative care is important. Not just because it improves quality of life and relieves suffering for patients and families, but because many of the skills in palliative care are useful in every other health setting—e.g. empathy, listening, communication, identification of problems and goals, developing priorities fast, and perhaps most important, working with and developing interprofessional teams so that patients get the right care at the right time from the right person. This is why palliative care education needs to start in the cradle and why it needs to continue to the grave.

The authors present the curricular elements of a palliative care experience for internal medicine residents at the Medical College of Wisconsin (MCW) and the Zablocki Veterans Affairs Medical Center (ZVAMC), Milwaukee, Wisconsin. To improve resident physicians' knowledge and skills in palliative care, a structured clinical/educational experience was integrated into an existing required geriatrics rotation for senior medicine residents. Each month, two residents rotate simultaneously in the palliative care and the geriatrics evaluation and management units at the ZVAMC. The curricular elements of palliative care include prognostication, assessment and management of pain and nonpain symptoms in end-of-life care. The geriatrics component emphasizes mechanisms of aging, pathophysiology of common geriatric diseases, clinical pharmacology and psychosocial aspects of geriatric care. Teaching methods include direct patient care, bedside teaching rounds, lectures, and multidisciplinary and family meetings. Rotation design avoided conflicting time demands on the residents. In a prerotation/postrotation knowledge self-assessment questionnaire, residents (n = 28) indicated significant knowledge improvement in all palliative care domains taught during the experience. The rotation was well integrated into the existing curricular elements in geriatrics and palliative medicine at MCW. This combined rotation can serve as a reference for educators interested in developing new or enhancing existing palliative care training programs.

Living and Dying Well: A National Action Plan for Palliative and End of Life Care in Scotland (Scottish Government 2008) highlighted that optimal palliative care provision was highly dependent on...

There has been increasing recognition of the potential of games in health; however, knowledge of their application in palliative care is lacking. Therefore, this study aimed to identify and map the available evidence on the use of games in palliative care, analyzing how research has been conducted on this topic and identifying gaps in knowledge. A scoping review was carried out. The literature search was conducted using the respective descriptors and search syntax appropriate to each of the databases searched. The review included all study types with no time limits. Of the 685 articles initially identified, 53 were included for final analysis. Several different game types were identified, with the majority of studies using role-play (n = 29) and card games (n = 17). The games analyzed were essentially aimed at empowering patients (n = 14), and in some cases, extended to families or caregivers, as well as to medical and nursing students. The analysis of the articles in this review resulted in two major themes: Role-playing for training in palliative care and card games to discuss end-of-life care. Games allow space for the expression of emotions and promote creativity. They can be applied both in a training context, to enable health professionals to develop essential skills in palliative care, and for patients, families, and caregivers, allowing them to talk about serious things while playing.

127 - Palliative Care

We appreciate your dedication to providing timely and appropriate palliative care services to patients in the intensive care unit (ICU) and for your questions regarding our article. We agree that the use of the tool is central to achieving desired outcomes. Regarding your question about the use of the tool Monday through Friday, this timing was a noted process limitation in the unit where the research was being conducted. Full team ICU rounds only occurred Monday through Friday. However, the tool was completed by the bedside nurse 7 days a week. On the weekend, the results of the palliative care screening could be conveyed to the provider and a palliative care consult could be pursued.In designing this process several years ago, we discussed the use of the tool to initiate an automatic palliative care consult. We noted that we had a blended model of both the consultative model and integrative model as referenced in Nelson et al.1 This dynamic process is informed by real-time availability of palliative care consultants (consultative model) in proximity to the identified need, the complexity of the consult, and the relationship already established by an intensivist who may have already adequately addressed the palliative care needs (integrative model). We discussed the automatic consult and this existing dynamic process and determined that it would be most efficient for the process and beneficial for the patient/family if the intensivist/attending provider was to determine if the palliative care needs had already been met or if a consult to the palliative care team would be indicated.Thank you for your insightful questions regarding the race of the 7 non-White participants who did not receive palliative care. Among these 7 patients, 4 were Black/African American and 3 were Indigenous/Native American. Although the small sample precludes additional analysis, we hope future researchers will work to understand and address racial disparities in access to palliative care.Your comments regarding moral distress are thoughtfully stated, and we certainly recognize that variables contributing to moral distress should be acknowledged and addressed to the extent possible within each organization and their ICUs. This issue is complex and can present a challenge when trying to assign weight to the different variables contributing to moral distress in the care and treatment of these ICU patients. Although it would seem ideal to have an automatic consultation model, multiple factors would need to be considered to avoid causing further moral distress and/or frustration. These factors include, but are not limited to, the existence of a palliative consultation team within the organization, the team's expertise in consulting on ICU patients, the urgency of the consult, the team's availability to consult in the ICU on any given day or at a given time, the knowledge and skill of providing palliative care services among those who are not palliative care consultants, and the culture within the ICU, which is a foundational component to any ICU palliative care program.Noting these factors, it is important to consider the features of the integrative model of palliative care. This model brings additional value,addresses the limitation of formal palliative care consultation resources 24/7, and is complementary to a consultative model. We believe the challenge in addressing the moral distress related to the palliative care process is to find the appropriate balance of these 2 models within each organization and ICU. This balance involves acknowledgment of current resources, dedication to enhancing formal palliative care consultation where possible, and provision of training for staff to leverage the benefits of the integrative model. All team members, including providers, nurses, social workers, and chaplains, must be committed to establishing a culture of trust and support built on the foundation of adequate palliative care knowledge and skills, which will result in timely action when the palliative care screening is indicative of a palliative care need. Potential moral distress resulting from perceived constraints in the process can certainly be mitigated through a balanced consultative/integrative model approach. This process of provider-to-provider consultation need not be seen as a barrier but rather a benefit to the process in ensuring we have appropriately assessed the palliative care opportunity for each appropriate patient and determined the best solution to meet those needs.Your comments are timely. The coronavirus disease 2019 pandemic has exposed existing deficiencies in our health care system, including lack of access to palliative care. We are grateful for your commitment to improving ICU palliative care, and we look forward to working together as a health care community to ensure access to high-quality palliative care.

Hospitalized patients with serious illness have significant symptom burden and face complex medical decisions that often require goals of care discussions. Given the shortage of specialty palliative care providers, there is a pressing need to improve the palliative care skills of internal medicine (IM) residents, who have a central role in the care of seriously ill patients hospitalized at academic medical centers. We conducted an anonymous survey of IM residents at a large, urban, academic medical center to identify which aspects of palliative care trainees find most important and their knowledge gaps in palliative care. The survey measured trainees' self-assessed degree of importance and knowledge of core palliative care skills and evaluated frequency of completing advance care planning documentation. Overall, 51 (23%) IM residents completed the survey. The majority of trainees considered multiple palliative care skills to be "very important/important": symptom management, prognostication, introducing the palliative care approach, discussing code status, and breaking serious news. Across these same skills, trainees reported variable levels of knowledge. In our sample, trainees reported completing healthcare proxy forms and Medical Orders for Life-Sustaining Treatment infrequently. IM trainees rated core palliative care skills as important to their practice. Yet, they reported knowledge gaps across multiple core palliative care skills that should be addressed given their role as frontline providers for patients with serious illness.

Recent publications have confirmed the use of standardized patients (SPs) in improving clinical skills and enhancing competency. Little research has studied the benefits residents may themselves gain in palliative care playing the role of SPs. Nineteen Family Medicine residents were recruited as standardized patients (FMR-SPs) for a mandatory palliative care workshop in communication for incoming, first-year trainees. Four months later, FMR-SPs reflected upon their own experiences. Two independent researchers performed thematic analysis of these interviews. Most of the residents were satisfied with their roles. Twelve reported improved understanding of self, their patients, the doctor-patient relationship, and the underlying philosophy of palliative care. They also described improved verbal and non-verbal communication skills. Eleven of 14 residents reflected upon behavioral changes in problem coping styles. All residents indicated an intention to apply the learning in their future work. Encouraging Thai Family Medicine residents, in years one through three, to portray SPs in palliative care appears to be a valuable learning experience for the resident. Future studies to validate whether this learning has been applied in subsequent practice are planned.