With the daily number of confirmed COVID-19 cases and associated deaths rising exponentially, social fabrics on a global scale are being worn by panic, uncertainty, fear, and other consequences of the health care crisis. Comprising more than half of the global health care workforce and the highest proportion of direct patient care time than any other health professional, nurses are at the forefront of this crisis. Throughout the evolving COVID-19 pandemic, palliative nurses will increasingly exercise their expertise in symptom management, ethics, communication, and end-of-life care, among other crucial skills. The literature addressing the palliative care response to COVID-19 has surged, and yet, there is a critical gap regarding the unique contributions of palliative nurses and their essential role in mitigating the sequelae of this crisis. Thus, the primary aim herein is to provide recommendations for palliative nurses and other health care stakeholders to ensure their optimal value is realized and to promote their well-being and resilience during COVID-19 and, by extension, in anticipation of future public health crises.
The large scale and rapid spread of the current COVID-19 pandemic has changed the way hospitals and other health services operate. Opportunities for patient-centered decision-making at the end of life are being jeopardized by a scarcity of health system resources. In response, the traditional doctor-initiated advanced care planning (ACP) for critical illness may also need to be readjusted. We propose nurse-led and allied health-led ACP discussions to ensure patient and family inclusion and understanding of the disease prognosis, prevention of overtreatment, and potential outcomes in crisis times. We highlight known barriers and list enablers, long-term and short-term opportunities to assist in the culture change.
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved ones has proven to be an even more important aspect of the care we have provided during the COVID epidemic. In this article, we describe the multicomponenet interdisciplinary interventions we have implemented to enhance our ability to create a therapeutic alliance with family members and facilitate the provision of goal concordant care to patients with COVID during this extremely difficult time.
District nurses are core providers of palliative care, yet little is known about the way that they provide care to people at home. This study aimed to investigate the role and practice of the district nurse in palliative care provision. This was an ethnographic study, with non-participant observation of district nurse-palliative care patient encounters, and post-observation interviews. District nurse teams from three geographical areas in northwest England participated. Data were analysed iteratively, facilitated by the use of NVivo, using techniques of constant comparison. Some 17 encounters were observed, with 23 post-observation interviews (11 with district nurses, 12 with patients/carers). Core themes were ‘planning for the future’ and ‘caring in the moment’. District nurses described how they provided and planned future care, but observations showed that this care focused on physical symptom management. District nurses engaged in friendly relationship building, which allows detailed management of symptomatology, but with little evidence of advance care planning.
In this paper, we strongly advocate for universal palliative care access during the COVID-19 pandemic. The delivery of universal palliative care services has been called for by leading global health organizations and experts. Nurses are critical to realizing this goal. COVID-19 diagnoses and fatalities continue to rise, underscoring the importance of palliative care, particularly in the context of scant resources. To inform the writing of this paper, we undertook a review of the COVID-19 and palliative care literature and drew on our experiences. It is very clear that investment in nurses is needed to ensure appropriate palliative care services now and into the future. Avoiding futile interventions and alleviating suffering is an ethical imperative for nurses regardless of the setting. Multi-level practices and policies to foster the delivery of safe, high-quality palliative care for all are urgently needed.
During the novel coronavirus disease 2019 (COVID-19) pandemic, it is particularly critical to ensure that life-sustaining treatment (LST) such as intubation and resource-intensive cardiopulmonary resuscitation (CPR) are aligned with a patient’s goals and values, and to avoid LSTs in patients with a poor prognosis that are unlikely to be beneficial, but have a high risk of causing additional suffering. The high volume and acuity of COVID-19 patients makes it extremely challenging for emergency department (ED) clinicians to take adequate time to clarify goals of care (GOC). We implemented an ED-based COVID-19 palliative care response team focused on providing high-quality GOC conversations in time-critical situations. We examined the clinical characteristics and outcomes of patients who received this intervention.
Methods: This retrospective observational study was conducted in the ED of an urban, quaternary care academic medical center in New York, New York. We included 110 patients for whom the palliative care team was consulted between March 27, 2020, and April 10, 2020, with follow-up through May 9, 2020. Columbia University institutional review board approved this study and waived the need for informed consent.
Emergency department clinicians consulted the palliative care team for assistance with any palliative care-related needs, including GOC clarification and cases where stated GOC did not align with expected prognosis. The palliative care team (1 attending physician who was board-certified in hospice and palliative medicine, 1 hospice/palliative medicine fellow clinician, and 4 psychiatry resident physicians and fellow clinicians, all trained in GOC conversations and supervised by the palliative care attending physician) was available in person 12 hours per day, and for phone consultation overnight and on weekends. The palliative care intervention focused on GOC conversations: conveying the prognosis in a clear and simple way, exploring patients’ goals and values, and making care recommendations based on elicited goals.1,2
Deidentified demographic data were collected from the medical record. Primary outcomes included GOC before and after palliative care intervention, as well as GOC on death or discharge. Secondary outcomes included clinical course and length of stay in the hospital
Goals of care were defined as “full code” (pursue all LSTs including intubation and CPR); “do-not-resuscitate (DNR) only” (pursue all LSTs excluding CPR); “DNR/do-not-intubate (DNI), continue medical treatment” (pursue all LSTs excluding intubation and CPR); and “comfort-directed care” (forgo LSTs, deliver symptom-focused treatment only). The GOC were presumed to be full code if no advance directives or medical orders for life-sustaining treatment (MOLST) were found on presentation to the ED.
Six patients were still hospitalized at the time of data review; they were excluded from the analysis for clinical course.
Results: The 110 patients were aged a median (range) of 81.5 (46-101) years and 61 (55.4%) were women. Patient demographic and clinical characteristics are reported in Table 1. Most patients were community-dwelling elderly persons (aged >75 years) with at least 2 comorbidities and lacked decision-making capacity at the time of presentation. Very few patients presented with documented advance directives or MOLST and therefore were presumed to be full code.
The primary outcomes are summarized in Table 2. After initial palliative care intervention, the number of full code decreased from 91 patients (82.7%) to 20 patients (18.2%). Among these 71 patients (64.5%) in whom CPR was declined, mechanical ventilation was also declined in 61 patients (55.5%) (ie, 32 patients in DNR/DNI, continue medical treatment, 29 patients in comfort-directed care). On discharge, the number of full code further decreased to 9 patients (8.6%), whereas comfort-directed care increased to 54 patients (51.9%). The median (range) length of stay was 4 (0-28) days and 71 patients (68.2%) died in the hospital. Among 33 patients (31.7%) who were discharged alive, 6 patients (5.8%) were discharged with hospice care.
Discussion: The included patients’ demographic characteristics were consistent with those of critically ill patients with COVID-19 previously reported and with those of patients reported to be at highest risk of death from COVID-19. Patients without advance care planning conversations are known to be at risk of receiving unwanted, high-intensity, lower-quality care,5 even though many seriously ill patients do not prefer LSTs at the end of life.6
The most important finding in this study was, after palliative care intervention in the ED, most patients and their surrogates opted to forgo mechanical ventilation and/or CPR, and that tendency further increased on discharge. We believe timely GOC conversations by the palliative care team helped avoid unwanted LSTs for patients with a poor prognosis. Study limitations include potentially limited generalizability given the retrospective design at a single institution. Also, palliative care consultation was initiated by ED clinicians, which may have led to selection bias, though a high rate of altered GOC after intervention suggests significant, unaddressed need in the outlying population.
In light of the COVID-19 pandemic, many healthcare systems are experiencing an increased demand for palliative care (PC). To meet this challenge, the PC team at Cleveland Clinic designed an enterprise-wide response plan organized around 4 domains: staff (educational resources and tools), stuff (medications and supplies), space (recommendations for optimizing physical space and facilities), and systems to facilitate high-quality PC delivery to patients. To mitigate isolation during end-of-life care, the Clinic offers “compassionate exceptions” to strict visitation policies, provides personal protective equipment to visitors of these patients, and facilitates virtual visitation via electronic devices.
Background: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. To enhance primary EoLC, the facilitators and barriers to their provision need to be understood.
Objective: To provide a comprehensive description of the facilitators and barriers to GP and GPN provision of PC or EoLC.
Method: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, PsycInfo, Embase, Joanna Briggs Institute and Cochrane databases.
Results: From 6209 journal articles, 62 reviewed papers reported the GP’s and GPN’s role in EoLC or PC practice. Six themes emerged: patient factors; personal GP factors; general practice factors; relational factors; co-ordination of care; availability of services. Four specific settings were identified: aged care facilities, out-of-hours care and resource-constrained settings (rural, and low-income and middle-income countries). Most GPs provide EoLC to some extent, with greater professional experience leading to increased comfort in performing this form of care. The organisation of primary care at practice, local and national level impose numerous structural barriers that impede more significant involvement. There are potential gaps in service provision where GPNs may provide significant input, but there is a paucity of studies describing GPN routine involvement in EoLC.
Conclusions: While primary care practitioners have a natural role to play in EoLC, significant barriers exist to improved GP and GPN involvement in PC. More work is required on the role of GPNs.
Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution.
Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care.
Design: Scoping review
Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement.
Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home.
Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
Background: Substitute decision-makers (SDMs) make decisions on behalf of patients who do not have capacity, in line with previously expressed wishes, values and beliefs. However, miscommunications and poor awareness of previous wishes often lead to inappropriate care. Increasing public preparedness to communicate on behalf of loved ones may improve care in patients requiring an SDM.
Methods: We conducted an online survey in January 2019 with a representative sample of the Canadian population. The primary outcome was self-reported preparedness to be an SDM. The secondary outcome was support for a high school curriculum on the role of SDMs. The effect of socio-demographics, known enablers and barriers to acting as an SDM, and attitudes towards a high school curriculum were assessed using multivariate analysis.
Results: Of 1,000 participants, 53.1% felt prepared to be an SDM, and 75.4% stated they understood their loved one’s values. However, only 55.6% reported having had a meaningful conversation with their loved one about values and wishes, and only 61.7% reported understanding the SDM role. Engagement in advance care planning for oneself was low (23.1%). Age, experience, training and comfort with communication were associated with preparedness in our multivariate analysis. A high school curriculum was supported by 61.1% of respondents, with 28.3% neutral and 10.6% against it.
Interpretation: There is a gap between perceived and actual preparedness to be an SDM. Many report understanding their loved one’s values yet have not asked them about wishes in illness or end of life. The majority of respondents support high school education to improve preparedness.
Background: Palliative care exists in diverse healthcare settings. Nurses play a crucial role in its provision. Different levels of palliative care provision and education have been recognized in the literature. Therefore, nurses need a set of various competencies to provide high-quality palliative care.
Aims: To systematically synthesize the empirical evidence of (1) nursing competencies needed in palliative care and (2) whether these competencies differ across the level of palliative care.
Design: Systematic integrative review with thematic synthesis. Prospero: CRD42018114869.
Data sources: CINAHL, PubMed, Academic Search Premier, Scopus and Medic databases. Studies on nursing competencies linked to palliative care reported in English, Swedish, Finnish, Spanish, Portuguese or German were considered. Search terms: ‘palliative care or hospice care or end-of-life care’, ‘competency or professional competence or skills’ and ‘nursing’. Articles were independently screened and reviewed by two researchers. Quality appraisal was conducted following Hawker’s criteria.
Results: A total of 7454 articles were retrieved, 21 articles were included in the analysis. Six diverse nursing competencies dimensions, namely leadership, communication, collaboration, clinical, ethico-legal and psycho-social and spiritual were identified. The reports rarely defined the level of palliative care and covered a wide array of healthcare settings.
Conclusion: Nurses need a wide range of competencies to provide quality palliative care. Few studies focused on which competencies are relevant to a specific level of palliative care. Further research is needed to systematize the nursing competencies and define which nursing competencies are central for different levels of palliative care to enhance palliative care development, education and practice.
Overcoming barriers in hospice and palliative care research is a multifaceted challenge for researchers conducting intervention studies. The complexity and variations of these barriers are abundant and serious in nature and can threaten the success of intervention research for the hospice and palliative care patient population. This article explores how challenges and barriers to intervention research can be mitigated by nurses caring for patients in hospice and palliative care settings.
When a patient dies, it is important that nurses understand their role in the verification of death. This article explains the steps required to verify the death of an adult patient. Verification of death is not a mechanistic task, but one that requires sensitivity and compassion. It is also crucial that nurses understand the legal implications of verifying a patient's death. With the development of the current coronavirus disease 2019 (COVID-19) pandemic, nurses must also understand any changes in their role when verifying the death of a patient. Verification or confirmation of death is the process of ascertaining whether a patient is deceased, based on a physical assessment. Nurses can only verify a death if the patient is expected to die and has a do not attempt cardiopulmonary resuscitation (DNACPR) order in place. A DNACPR order is essential because it allows the nurse to verify the death without being concerned with the need to resuscitate the patient. Nurses should ensure they act in accordance with local and national guidance regarding the verification of a patient's death. REFLECTIVE ACTIVITY: How to articles can help to update your practice and ensure it remains evidence based. Apply this article to your practice. Reflect on and write a short account of: How this article might inform your practice when verifying a patient's death. How you could use this information to educate your colleagues on the appropriate steps required when verifying a patient's death.
Background: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when working with this vulnerable cohort of children and their families. As part of a larger body of work to develop consensus-based recommendations for SLTs working in PPC, it is important to investigate demographic and caseload characteristics.
Aims: This exploratory study aimed to gather previously undocumented international demographic data pertaining to SLT service provision, caseload and training in PPC. Additionally, it sought to ascertain the current treatment and assessment approaches of SLTs, and if variations exist in beliefs and practices.
Methods & Procedures: An anonymous cross-sectional survey was designed and reported according to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES). The online survey consisted of 40 items spanning four domains: (1) demographic information, (2) caseload information, (3) service provision and (4) training and education. SLTs from Australia, Canada, New Zealand, the UK, Ireland and the United States were recruited using a purposive snowball sampling approach. Descriptive analysis of closed-ended survey responses and content analysis of open-ended responses are presented.
Outcomes & Results: A total of 52 respondents completed the survey. SLTs worked in a variety of PPC settings, with patients of varying age and disease groups. Over 50% of participants reported working in PPC for = 4 years. Genetic disorders (34%), oncology (27%) and neurological conditions (21%) made up a significant portion of respondents’ caseloads. Reported treatments and assessment approaches used by SLTs are not unique to a PPC population. Barriers and enablers for practice were identified. A portion of participants did not feel trained and prepared to assess (19.2%) or treat (15.4%) PPC clients.
Conclusions & Implications: This study confirms that SLTs internationally have a role in the management of communication and swallowing impairments in a PPC context. However, whether current training and resources adequately support SLTs in this role remains questionable. This paper helps to provide SLTs, administrators, professional associations and tertiary institutions with foundational data to help inform workforce planning, advocacy efforts and training priorities.
Introduction: Older people who live in care homes have a high level of need with complex health conditions. In addition to providing medical care to residents, general practitioners (GPs) play a role as gatekeeper for access to services, as well as leadership within healthcare provision. This review will describe how GPs were involved in initiatives to change arrangements of healthcare services in order to improve quality and experience of care.
Methods and analysis: Following RAMESES quality and publication guidelines standards, we will proceed with realist review to develop theories of how GPs work with care home staff to bring about improvements. We identify when improvement in outcomes does not occur and why this may be the case. The first stage will include interviews with GPs to ask their views on improvement in care homes. These interviews will enable development of initial theories and give direction for the literature searches. In the second stage, we will use iterative literature searches to add depth and context to the early theories; databases will include Medline, Embase, CINAHL, PsycINFO and ASSIA. In stage 3, evidence that is judged as rigorous and relevant will be used to test the initial theories, and through the process, refine the theory statements. In the final stage, we will synthesise findings and provide recommendations for practice and policy-making. During the review, we will invite a context expert group to reflect on our findings. This group will have expertise in current trends in primary care and the care home sector both in UK and internationally.
Background: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations.
bjective: The objective of this pilot study was to provide suggestions from medical interpreters to palliative care teams as to how to effectively incorporate medical interpreters into end-of-life conversations.
ubjects and Method: Participants included pediatric hospital-based medical interpreters who had interpreted for at least 1 end-of-life conversation in the pediatric hospital setting. A total of 11 surveys were completed by medical interpreters. The study consisted of a written 12-item survey with a follow-up focus group to further explore survey themes.
Results: The translation of cultural contexts, awareness of the mixed messages the family received from health care teams, and the emotional intensity of the interactions were depicted as the most challenging aspects of the medical interpreter's role. Despite these challenges, 9 interpreters reported they would willingly be assigned for interpreting "bad news" conversations if given the opportunity (82%). Medical interpreters recognized their relationship with the family and their helping role for the family as meaningful aspects of interpreting even in difficult conversations. Medical interpreters shared 7 thematic suggestions for improved communication in language-discordant visits: content review, message clarity, advocacy role, cultural understanding, communication dynamics, professionalism, and emotional support.
Conclusions: As experts in cultural dynamics and message transmission, the insights of medical interpreters can improve communication with families.
L’HAD permet de prodiguer au domicile des soins lourds et techniques et/ou requérant une importante coordination pluridisciplinaire, non réalisables par les seuls professionnels de ville, dans des conditions de sécurité et de qualité comparables à celles d’un hébergement en établissement de santé, dès lors que sont remplies des conditions de faisabilité. Elle est nécessairement prescrite par un médecin, en accord avec le patient et son entourage. Considérablement développée depuis 20 ans, elle intervient sur tous les départements de métropole et d’outre-mer (en 2019 : 295 établissements).
[Début de l'article]
Les équipes ressources régionales en soins palliatifs pédiatriques interviennent à la demande des équipes soignantes qui gravitent autour de l’enfant et de sa famille. Au sein de ces équipes pluriprofessionnelles, la puéricultrice participe à l’élaboration et à la coordination du projet de vie de l’enfant en soins palliatifs en permettant le lien domicile-ville-hôpital. Grâce à son expertise, elle veille à garder l’enfant au centre des préoccupations soignantes en tenant compte de la place des parents.
BACKGROUND: Patients in the last phase of their lives often use many medications. Physicians tend to lack awareness that reviewing the usefulness of medication at the end of patients' lives is important. The aim of this study is to gain insight into the perspectives of patients, informal caregivers, nurses and physicians on the role of nurses in medication management at the end of life.
METHODS: Semi-structured interviews were conducted with patients in the last phase of their lives, in hospitals, hospices and at home; and with their informal caregivers, nurses and physicians. Data were qualitatively analyzed using the constant comparative method.
RESULTS: Seventy-six interviews were conducted, with 17 patients, 12 informal caregivers, 15 nurses, 20 (trainee) medical specialists and 12 family physicians. Participants agreed that the role of the nurse in medication management includes: 1) informing, 2) supporting, 3) representing and 4) involving the patient, their informal caregivers and physicians in medication management. Nurses have a particular role in continuity of care and proximity to the patient. They are expected to contribute to a multidimensional assessment and approach, which is important for promoting patients' interest in medication management at the end of life.
CONCLUSIONS: We found that nurses can and should play an important role in medication management at the end of life by informing, supporting, representing and involving all relevant parties. Physicians should appreciate nurses' input to optimize medication management in patients at the end of life. Health care professionals should recognize the role the nurses can have in promoting patients' interest in medication management at the end of life. Nurses should be reinforced by education and training to take up this role.
In 2019, the Royal College of Nursing (RCN) and Queen's Nursing Institute (QNI) recognised a significant reduction in the number of qualified district nurses (those who hold the Community Specialist Practitioner (CSP) qualification). Community nursing is an evolving role, and, with the role of community nurse expanding, the role of the CSP in supporting teams to adapt to the development of the role is more important than ever. As a leader, the CSP possesses skills in leadership and co-ordination of the team, alongside specialist knowledge of the provision of nursing care in community settings. This article seeks to explore the hidden practice of verification of expected adult deaths by registered nurses and how the CSP role is integral in developing and embedding this skill within a team.