Long-term care (LTC) nurses are a critical nexus for patient communication and vital to advance care planning due to their professional role and breadth of patient relationships. The current study's aim was to explore the communication strategies Midwestern LTC nurses use to clarify patients' end-of-life (EOL) care preferences. Two focus groups used a phenomenological framework to elucidate the experiences of 14 RNs. Data analysis revealed two themes grounded in time: (a) nurses use time to assess patients' EOL situation and assist patients to discern care options; and (b) nurses educate patients about EOL care, adjust care plans, and develop trusting relationships. Two themes were grounded in clinical experience: (a) nurses become persistent advocates and educators to initiate and sustain EOL communication; and (b) nurses learn consistency in communication, including awareness of patients' nonverbal communication. Nurses shared that EOL communication is never "done"; time frames to assess, educate, and clarify are continuous.
Paramedics play an essential and distinct role as providers of care to the dying, deceased and bereaved in Aotearoa, New Zealand and around the world. In this paper, we highlight what is known about the features, barriers and facilitators of quality end-of-life care by emergency ambulance personnel. We also identify priorities for future policy and practice, education and research in this area. Paramedics provide urgent and after-hours support to those with known life-limiting illness and their caregivers, but also attend sudden deaths, from unexpected or unknown causes. Paramedic care at the end of life may involve attempted resuscitation; challenging decision-making and communication; symptom relief; recognition of irreversible dying; provision of compassionate, culturally responsive support for co-responders, bystanders and the bereaved. There is an insufficient acknowledgement of the critical and unique role of paramedics, as providers of urgent care to the dying deceased and bereaved. Ambulance personnel around the world want better preparation and support for end-of-life care. Future research should aim to evaluate and improve this vital care, explore the needs and experiences of those who call an ambulance in the context of death, dying or bereavement and address equity and cultural responsiveness.
A hematopoietic stem cell transplant (HSCT) is an intense treatment approach for patients with a hematologic malignancy and brings a significant risk for morbidity and mortality. HSCT brings hope of cure for patients; however, treatments are lengthy and burdensome from both a physical and psychosocial perspective. As the culture of HSCT has traditionally been cure-oriented, it leaves little room for a potential partnership with palliative care services, and when palliative care services are introduced, it is often too late for significant benefit. The need to standardize palliative care involvement for patients with hematologic malignancies receiving a HSCT has become necessary, yet there are challenges with the best way to create such a partnership. Nurse practitioners are a steadily growing professional body possessing the knowledge and skill necessary to fill the gap in palliative care delivery for HSCT patients. The proposed Nurse Practitioner Early Palliative Care for HSCT patients (NEST) algorithm will seek to provide a pathway in which to foster a partnership between hematology/HSCT teams and palliative services to yield the best care possible for patients.
The disruption to health care delivery introduced by the coronavirus disease 2019 pandemic suggests a near-term future very different from a few months ago. Among the many lessons learned are the value of preparing for unpredictable medical events and the need for high-human-touch health care when serious situations arise.
Retention of staff presents major challenges within children's palliative care; this has substantial implications for children, families and the nursing workforce. To address this, a programme was undertaken that provided pathways of professional development for senior nurses working in this field. This study reports the views of nurses completing this programme, the overall project manager (PM) and the day-to-day programme lead (PL) as well as factors that influence nurse retention within children's palliative care nursing. The study drew on an Appreciative Inquiry approach that comprised of interviews with the PM and PL as well as focus groups and questionnaires with senior nurses from the children's palliative care sector, who participated in the training programme. Thematic analysis of data from interviews and focus groups revealed factors influencing nurse retention: speciality, positivity and making a difference, support, provision of adequate resources, tailored education/professional development and resilience. These themes were supported by the questionnaire findings. The programme was perceived as having a positive influence on nurse retention within the children's palliative care workforce. In addition, it was felt to be very beneficial in terms of shared learning and development. Participants highlighted the need for similar opportunities in the future.
BACKGROUND: The context of care provided in long-term care homes is changing, as an increasing number of older adults are entering long-term care with advance stages of illness and higher care needs. Long-term care homes are quickly becoming the place of death for an increasing number of older adults, despite recent literature identifying inadequate and suboptimal levels of end-of-life care. Within long-term care, healthcare assistants represent 60%-70% of the unregulated workforce and provide 70%-90% of the direct care to residents. Research indicates that a high level of uncertainty exists surrounding the role of healthcare assistants in end-of-life care, with numerous studies reporting the role of healthcare assistants to be 'unclear' with varying levels of responsibilities and autonomy.
OBJECTIVE: The purpose of this scoping review was to explore healthcare assistants' experiences and perspectives of their role in end-of-life care in long-term care.
METHODS: We applied Arksey and O'Malley's methodological framework, with recommendations from Levac and colleagues' guiding principles. Electronic databases and the grey literature were searched for relevant articles. Search concepts included end-of-life care and healthcare assistants. Articles were included in this review if they explored healthcare assistants' experiences or perspectives of providing end-of-life care in long-term care. The peaceful end of life theory by Ruland and Moore (1998) was used to organise data extraction and analysis.
RESULTS: A total of n = 15 articles met the inclusion criteria. The most predominant role-required behaviours reported by healthcare assistants were as follows: psychosocial support to significant others, knows the resident's care wishes and physical care with respect and dignity. The most predominant extra-role behaviours reported by healthcare assistants were as follows: becoming emotionally involved, acting as extended family and ensuring residents do not die alone.
CONCLUSIONS: Findings from this review expanded the concept of end-of-life care by illustrating the role-required and extra-role behaviours healthcare assistants perform when providing end-of-life care in long-term care.
IMPLICATIONS FOR PRACTICE: Findings from this scoping review highlight the numerous behaviours healthcare assistants perform outside their role description in order to provide end-of-life care to dying residents in long-term care. These findings could inform policymakers and managers of long-term care homes.
OBJECTIVE: Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC).
METHOD: Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes.
RESULTS: Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs.
SIGNIFICANCE OF RESULTS: The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.
Home support for patients receiving in-home palliative and end-of-life care (PELC) is greatly dependent on the daily presence of caregivers and their involvement in care delivery. However, the needs of caregivers throughout the care trajectory of a loved one receiving in-home PELC are still relatively unknown.
Objectives and methodology: This descriptive qualitative study focuses on the role of caregivers who have cared for a person receiving in-home PELC with the goal of describing their needs throughout the care trajectory. As part of this process, 20 caregivers took part in semi-directed interviews.
Results and discussion: This study sheds light on the multiple needs of caregivers of loved ones receiving in-home PELC. These informational, emotional, and psychosocial needs show that caregivers experience changes in their relationship with their loved one. Spiritual needs were expressed through the meaning ascribed to the home support experience. And the practical needs expressed by participants highlight the importance of round-the-clock access to PELC services and the essential importance of nursing support.
Conclusion: The needs of caregivers of loved ones receiving in-home PELC are not being met to a satisfactory degree. It is important to consider these needs in the care trajectory, alongside the needs of the patients themselves, in order to improve the support experience leading up to the bereavement period.
Aim: To assess the educational needs, role and perceptions in palliative care issues of radiation oncologists (ROs) and trainees.
Background: 1/3 of radiotherapy patients are treated with palliative intent. Conversely, education and role that ROs have in the palliative care process are not well established, neither in terms of how they perceive their competence nor whether it is important to improve training, research and attention in palliative care issues at radiotherapy congresses.
Material and Methods: Literature systematic review in National Library of Medicine and Cochrane databases with 11 relevant issues to be identified. One doctor made first selection of articles, a second one confirmed their eligibility.
Results: 722 articles reviewed, 19 selected. 100% recognize the importance of palliative care in radiotherapy, 89.4% the need of training in palliative care for ROs, 68.4% the necessity of improving the resident programs, 63.1% the importance of skilled ROs in palliative care, 63.1% the need of better communication skills and pain management (47.3%), 52.6%, the perception of inadequate training in palliative care, 36.8% the lack of research and palliative care topics in radiotherapy meetings, 21% the absence of adequate guidelines regarding palliative care approaches, 42.1% the importance of the ROs in palliative care teams and 26.3% the lack of their involvement.
Conclusion: Palliative care has an important role in radiotherapy but it seems ROs still need more training. It is necessary to improve training programs, increment palliative care research in radiotherapy, giving more attention to palliative care themes at radiotherapy congresses. This could lead to a better integration of radiotherapists in multidisciplinary palliative care teams in the future.
This article presents the case of a mother of young children who has terminal stage IV cancer with whom providers had not discussed goals of care and prognostication. Communications about prognostication and goals of care are commonly initiated by physicians. Adolescents and young and middle-age adults with complex chronic or terminal illness often are not provided with timely, clear, complete information or palliative care support. Early palliative care for chronically ill patients facilitates discussions of prognostication and goals of care, in addition to providing symptom management. Such discussions do not diminish hope but rather allow patients to adjust hope to attain an optimal quality of life. Nurses can become active, confident advocates for patients with terminal illness of any age, and they are well positioned to assess patients and engage in goals of care and end-of-life conversations. It is especially important that palliative care nurses promote and maintain these early and comprehensive discussions during the COVID-19 pandemic because this population is at a high risk of complications from the coronavirus.
AIMS: To examine hospital nurses' perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution.
DESIGN: A qualitative interview study.
METHODS: Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers.
RESULTS: Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses' descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients.
CONCLUSION: Nurses described behaviour that reflected a supporting role in shared decision-making about patients' life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making.
IMPACT: Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses' involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role.
Social workers provide unique knowledge and psychosocial skills for seriously ill patients and their family. Clinicians often collaborate with social workers when caring for seriously ill patients. In fact, the Medicare Hospice Benefit and the National Consensus Project (NCP) for Quality Palliative Care state that social workers are a core member of a hospice or palliative care (PC) interdisciplinary team (IDT). This Fast Fact will discuss the role of the hospice and palliative care social worker.
Faire reconnaître le rôle central des aidants profanes et rappeler le caractère indispensable de leur contribution fait aujourd’hui partie des principaux besoins que les aidants revendiquent explicitement, tant vis-à-vis des professionnels avec qui ils collaborent, que vis-à-vis des pouvoirs publics. Dans un contexte de plus forte sensibilisation à leur égard, c’est aussi l’ambition de ce numéro de Gérontologie et société, qui se propose à la fois de définir et de renseigner ce que recouvre la notion de proches aidants auprès de personnes âgées mais également de comprendre la nature de leurs engagements et de leurs expériences. Comment ces aidants pensent-ils leur rôle et envisagent-ils leur situation ? Quels sont les ressorts et les logiques sociales qui déterminent leurs investissements et leurs manières d’aider ? Dans quelle mesure sont-ils épaulés et comment s’accommodent-ils des services qui leurs sont proposés ? Sur la base d’une sélection de 9 articles, retenus pour leur diversité d’approche disciplinaire et territoriale, les contributions présentes dans ce numéro offrent un témoignage concret du profil hétérogène de ces aidants, de l’extrême diversité des tâches qu’ils accomplissent mais aussi des difficultés qu’ils sont susceptibles de rencontrer au quotidien. Plus fondamentalement encore, ils interrogent la situation d’aide, l’intimité des relations entre aidants et aidés et démontrent l’impérieuse nécessité à poursuivre les efforts pour soutenir ces proches aidants dans leur travail quotidien d’accompagnement.
Although long-term care (LTC) home staff of nurses and personal support workers spend the most time providing direct care, their role in end of life decision-making for residents with dementia has largely been unacknowledged. Staff's perceptions of their role play a significant part in how they support people with dementia and family care partners. The purpose of this study was to examine LTC home staff's perspectives of their role in end of life decision-making for LTC home residents with dementia. For this interpretive descriptive study, 21 semi-structured interviews were conducted in two urban LTC homes with nine personal support worker (PSWs), eight registered practical nurses (RPNs), and four registered nurses (RNs). Additionally, a focus group was conducted, consisting of each a PSW, RPN, and RN. A voice-centred relational analysis was used to situate LTC home staff's perspectives within broader social contexts. Findings suggest that little has changed in LTC homes in the last 50 years. Rooted in dichotomies between medical and social care paradigms, ideologies of rationality and professionalism created tensions, hierarchical roles, and staff's minimal involvement in decision-making. A relational approach is needed to account for the interdependency of care and the relationships that LTC home staff have with residents, family care partners, and the sociopolitical environment.
Since the 2015 Canadian legalization of medical assistance in dying (MAiD), many Canadian music therapists have become involved in the care of those requesting this procedure. This qualitative study, the first of its kind, examines the experience of music therapy within MAiD, exploring lived experience from three perspectives: the patient, their primary caregiver, and the music therapist/researcher. Overall thematic findings of a hermeneutic phenomenological analysis of ten MAiD cases demonstrate therapeutically beneficial outcomes in terms of quality of life, symptom management, and life review. Further research is merited to continue an exploration of the role of music therapy in the context of assisted dying.
La découverte d’une anomalie fœtale sévère in utero peut conduire à une décision d’interruption médicale de grossesse (IMG) et aussi à la prise en charge palliative de l’enfant à la naissance. Dans ce contexte, une pratique interdisciplinaire s’est rapidement imposée. La rencontre des parents et du pédiatre en période prénatale permet d’expliquer le retentissement de la pathologie sur un futur enfant, et ce quel que soit le choix final par rapport à la grossesse. Dans le contexte d’une prise en charge palliative à la naissance, cela permet d’anticiper cette prise en charge particulière en insistant sur la valeur du temps de vie et de la rencontre. Les équipes obstétricales et néonatales peuvent écouter les attentes des futurs parents et leur faire des propositions en leur laissant le temps de la réflexion. L’anticipation commune des interactions entre les décisions obstétricales et pédiatriques permet de viser une cohérence du sens donné à ce parcours au cours duquel des équipes différentes doivent se succéder auprès des parents et de l’enfant dans une démarche néanmoins commune.
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty.
Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role.
Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child.
Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
BACKGROUND: The coronavirus disease 2019 pandemic has led to escalating infection rates and associated deaths worldwide. Amid this public health emergency, the urgent need for palliative care integration throughout critical care settings has never been more crucial.
OBJECTIVE: To promote palliative care engagement in critical care; share palliative care resources to support critical care nurses in alleviating suffering during the coronavirus disease 2019 pandemic; and make recommendations to strengthen nursing capacity to deliver high-quality, person-centered critical care. Methods Palliative and critical care literature and practice guidelines were reviewed, synthesized, and translated into recommendations for critical care nursing practice.
RESULTS: Nurses are ideally positioned to drive full integration of palliative care into the critical care delivery for all patients, including those with coronavirus disease 2019, given their relationship-based approach to care, as well as their leadership and advocacy roles. Recommendations include the promotion of healthy work environments and prioritizing nurse self-care in alignment with critical care nursing standards.
CONCLUSIONS: Nurses should focus on a strategic integration of palliative care, critical care, and ethically based care during times of normalcy and of crisis. Primary palliative care should be provided for each patient and family, and specialist services sought, as appropriate. Nurse educators are encouraged to use these recommendations and resources in their curricula and training. Palliative care is critical care. Critical care nurses are the frontline responders capable of translating this holistic, person-centered approach into pragmatic services and relationships throughout the critical care continuum.
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. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood.
OBJECTIVE: To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system.
METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN's role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs.
CONCLUSIONS: Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.