OBJECTIVES: Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical conditions, and includes cardiopulmonary resuscitation, mechanical ventilation, haemodialysis and left ventricular assist devices. This study aimed to investigate the thoughts on life-sustaining treatment of Koreans and to assess the factors associated with deciding to not receive life-sustaining treatment if they develop a terminal disease.
DESIGN: Cross-sectional study.
SETTING: Guro-gu centre for dementia from 1 May 2018 to 31 December 2019.
PARTICIPANTS: In total, 150 individuals participated in this study.
OUTCOME MEASURES: The questionnaire consisted of self-report items with some instructions, demographic characteristics, thoughts on life-sustaining treatment and psychosocial scales. The preferences of the participants were investigated on the assumption that they develop terminal cancer. The psychosocial scales included the Generalised Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire-9 (PHQ-9), Connor-Davidson Resilience Scale and Multidimensional Scale of Perceived Social Support (MSPSS).
RESULTS: We classified our participants into two groups: individuals who wanted to receive life-sustaining treatment (IRLT) and individuals who wanted to not receive life-sustaining treatment (INLT). There were twice as many participants in the INLT group than there were in the IRLT. In making this decision, the INLT group focused more on physical and mental distress. Additionally, 32.7% of participants responded that terminal status was an optimal time for this decision, but more participants want to decide it earlier. The GAD-7 and PHQ-9 scores were significantly higher in the INLT group than in the IRLT group. However, the INLT group had significantly lower MSPSS family scores.
CONCLUSION: Our findings can help assess issues regarding advance directives and life-sustaining treatment, and will be a reference for designing future studies on this issue.
AIMS AND OBJECTIVES: To explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of participants to have these conversations.
BACKGROUND: Awareness about perspectives of people with dementia should decrease stigmatization and improve their quality of life. Applying palliative care principles from an early stage is important to address diverse needs and to anticipate the future. Few studies investigate perspectives of people with dementia regarding palliative care, including advance care planning.
DESIGN: Qualitative descriptive design.
METHODS: We performed in-depth interviews with 18 community-dwelling persons with dementia in South-Limburg, the Netherlands. Transcripts were analyzed using an inductive content analysis. Two authors coded the data and regularly compared coding. All authors discussed abstraction into categories and themes. We followed the COREQ reporting guidelines.
RESULTS: Five overarching themes derived from the interviews were: 1) My life still has value and meaning, 2) I am my own unique individual, 3) I place my trust in other people, 4) The future worries me, and 5) I accept and embrace what life brings.
CONCLUSIONS: Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, they primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognized as unique and worthy humans, until the end of life.
RELEVANCE TO CLINICAL PRACTICE: This study demonstrates capability and willingness of people with dementia to discuss the future and end-of-life topics. Public and professional awareness may facilitate opportunities for informal end-of-life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families.
This study identified the trends in end-of-life care and nursing through text network analysis. About 18,935 articles published until September 2019 were selected through searches on PubMed, Embase, Cochrane, Web of Science, and Cumulative Index to Nursing and Allied Health Literature. For topic modeling, Latent Dirichlet Allocation (K = 8) was applied. Most of the top ranked topic words for the degree and betweenness centralities were consistent with the top 1% through the semantic network diagram. Among the important keywords examined every five years, "care" was unrivaled. When analyzing the two- and three-word combinations, there were many themes representing places, roles, and actions. As a result of performing topic modeling, eight topics were derived as ethical issues of decision-making for treatment withdrawal, symptom management to improve the quality of life, development of end-of-life knowledge education programs, life-sustaining care plan for elderly patients, home-based hospice, communication experience, patient symptom investigation, and an analysis of considering patient preferences. This study is meaningful as it analyzed a large amount of existing literature and considered the main trends of end-of-life care and nursing research based on the core subject control and semantic structure.
BACKGROUND: Pastoral care in an acute hospital setting necessarily includes some bereavement support for families of patients who die. Termed universal bereavement support, an important component of such support is provision of educational information to assist bereaved people struggling with grief. This project aimed to understand, from the perspective of those attending, the value of providing a memorial service for remembering a loved one and whether the education provided at the service successfully met the requirement of a universal bereavement support strategy.
METHODS: A qualitative study, comprising a semistructured telephone interview with memorial service attendees was undertaken. Data were audio recorded, transcribed and analysed thematically.
RESULTS: Twenty-nine attendees participated. Three themes provided insights into attendees' perceptions. The first theme encapsulated the value of remembering and celebrating the life of the deceased; the second theme focused on 'finding our way through the grief process' including the value of the educational materials ; and the third theme identified appreciation for the hospital in providing care to those bereaved.
CONCLUSION: The memorial service provides a valued universal bereavement support strategy and such support strategies are an important part in the process of grieving for many attendees.
PURPOSE: This study aimed to determine the palliative care difficulties experienced by nursing students during their clinical practice.
DESIGN AND METHODS: This descriptive and cross-sectional study was conducted with 305 nursing students at a university in Turkey. Data were collected using a student identification form and the palliative care difficulties scale.
FINDINGS: Nursing students experience a moderate level of difficulty in providing care for palliative care patients and receiving expert support facilitates their care initiatives.
PRACTICE IMPLICATIONS: It is important to support nursing students during their nursing education courses and clinical training, along with psychiatric nursing skills.
PURPOSE: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative care in their clinical settings.
METHODS: The study used the grounded theory approach to data collection and analysis. Twenty-one pediatric oncologists from six pediatric cancer centers across Israel were interviewed. Data was analyzed using line-by-line coding.
RESULTS: The analysis resulted in a four-tiered conceptual model. This model included the following categories: (1) ill-defined concept; (2) philosophies of palliative care; (3) trajectory of palliative care; and (4) palliative care treatment goals.
CONCLUSION: The findings illustrate the current conceptualizations of pediatric palliative care among the pediatric oncology community in Israel. The conceptual model documents their understanding of pediatric palliative care as a philosophical approach and the challenges they face in differentiating between palliative care and standard pediatric oncology care. Pediatric palliative care is a highly needed and valued sub-specialty. The findings from this study highlight the importance for its continued development in Israel, as it can reduce the suffering of children and their families. Concurrently, pediatric oncologists need to have more resources and access to explicit knowledge of the conceptual and practical aspects of both primary and specialized pediatric palliative care.
CONTEXT: Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life.
OBJECTIVE: To explore patient and caregiver understanding and valuation of "continuity of care" while transitioning from an in-hospital to a home-based palliative care team.
METHODS: Longitudinal qualitative design using semi-structured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio recorded and transcribed verbatim. Data were analyzed using thematic analysis within a post-positivist framework. Thirty-nine participants (18 patients, 7 caregivers and 7 patient-caregiver dyads) were recruited from two acute care hospitals wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care.
RESULTS: Patients had a mean age of 68, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers.
CONCLUSION: Patients' and their caregivers' valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.
Entretien avec Mireille Lavoie, doyenne de l'Université Laval.
Mireille Lavoie répond aux questions de Gilles Nadeau, partage son expérience d'encadrement et de formation d'étudiants en sciences infirmières, son recul sur l'évolution des pratiques de soins palliatifs aux cours de sa carrière.
Entre mars et juin 2020, le nombre de personnes décédées du Covid-19 nous a été transmis par les médias chaque soir, accompagné de commentaires soulignant l’évolution de l’épidémie. Ces chiffres ont eu un effet paradoxal : d’un côté ils ont alimenté la peur et le trauma collectifs ; d’un autre ils ont contribué à voiler la nature et la violence des drames vécus, par définition toujours singuliers. Derrière ces chiffres se cachaient des fins de vie d’hommes et de femmes, privés durant leurs derniers jours de la présence d’un visage familier à leur côté, mais aussi des soignants, tentant de faire au mieux pour les accompagner, loin de l’image héroïque que l’on cherchait à leur donner.
Autre paradoxe des médias qui, alors qu’ils martelaient chaque jour le nombre de victimes, rendaient inaudibles le travail d’accompagnement de fin de vie en convoquant l’imaginaire social du héros risquant sa vie pour sauver celle des autres.
Nous entendons que cette crise sanitaire a été l’opportunité pour les soignants de se réapproprier l’organisation du travail face aux gestionnaires, de faire à nouveau l’expérience de la coopération, de retrouver le sens du métier. C’est en partie vrai, mais en partie seulement. Paradoxalement, c’est tout l’inverse qui s’est passé en unités de soins palliatifs, ces services hospitaliers spécialisés dans l’accueil de personnes qui, à échéances diverses, sont arrivées à la fin de leur vie. Ce mouvement de soin, assez méconnu du grand public, représente dans notre société la pointe avancée d’une culture professionnelle de l’accompagnement. Leur éthique se structure autour de principes comme l’interdisciplinarité, le soulagement de la douleur, l’apaisement de la souffrance et le soin apporté aux proches des patients. Or, les mesures d’hygiène et de sécurité ont conduit les unités de soins palliatifs à restreindre les visites des proches et à cliver les collectifs de travail entre ceux qui étaient jugés indispensables à la gestion de crise et les autres. En séparant les patients de leurs proches et en fragilisant l’interdisciplinarité, les soins palliatifs ont, plus que tout autre discipline de soin, renié ce qui les anime.
Cet article n’est toutefois pas un texte sur les soins palliatifs. Nous prenons ici appui sur eux comme opérateur d’intelligibilité pour explorer ce que notre société sacrifie sur l’autel de l’hygiène et de la sécurité. En tentant de comprendre comment des soignants qui cultivent quotidiennement l’approche de soin globale ont pu laisser des personnes mourir loin de leurs proches, nous espérons contribuer à éclairer ce qui peut se passer dans d’autres secteurs du soin, voire dans d’autres professions. Cette crise sanitaire a ceci de particulier qu’elle a partout généré de nouvelles organisations du travail. En fonction des professions, ces modifications ont plus ou moins « attaqué » les règles de métier et généré des conflits de valeurs.
Notre position de soignants offre un point de vue privilégié pour penser cette question ; elle constitue aussi une limite car nous ne pouvons prétendre à l’impartialité. Notre réflexion prend appui sur ce que nous avons vécu, vu et entendu et que nous ne saurions généraliser à l’ensemble du mouvement des soins palliatifs. Une démarche de recherche permettra d’explorer de manière plus précise à l’avenir les hypothèses que nous avançons ici.
Ce moment tant redouté d’entrer dans l’intimité d’un autre devient en fait une opportunité pour mieux se rencontrer. Cette grande proximité est une occasion pour le patient d’exprimer en confiance une part de souffrance avec des mots et/ou avec son corps, entre les mains et les oreilles d’une soignante dont il sent la disponibilité, et en qui il peut se remettre. Et l’accueil de ce don par les soignantes le conforte un peu plus dans sa place d’être humain grâce au mouvement vertueux des échanges au sein de cette relation.
L’ouverture bienveillante à l’autre reste un fondamental ontologique. La mutation intérieure provoquée par ce travail d’intériorité conduit le soignant dans une disposition d’écoute particulière du patient. Une écoute de pure présence, lieu révélateur d’une profonde humanité qui englobe et dépasse l’être humain. La relation se transforme alors en lien, condition à la rencontre. Et cette rencontre devient événement où advient une part insoupçonnée de soi et de l’autre.
Par et dans la rencontre avec les patients dont nous prenons soin, une expérience spirituelle peut aussi être vécue, intime, mais reçue d’un autre. De ses profondeurs, du récit de sa vie, des choses ordinaires du quotidien, de ses liens aux autres, de sa traversée de la maladie, de la mort envisagée, le sujet peut risquer une parole, partageant à celui qui l’écoute ce que cela lui fait vivre. Il attend que quelqu’un réponde alors présent et demeure avec lui.
Entrer dans cette dynamique, ce n’est pas faire plus, mais s’efforcer de faire autrement. Il s’agit avant tout d’habiter l’acte de soin autrement et d’aller vers la personne souffrante avec un autre regard, plus aiguisé, plus large et avec un autre niveau d’attention à ce qu’elle dit et signifie de sa propre existence. C’est être convaincu que l’attention à la dimension spirituelle est une de ses dimensions constitutives et que la spiritualité contribue à l’équilibre de la personne souffrante.
Background: There is paucity of data on the potential value of early palliative home care for patients with hematologic malignancies.
Objective: To compare costs, use of resources, and clinical outcomes between an early palliative home care program and standard hospital care for active-advanced or terminal phase patients.
Patients and Methods: In this real-life, nonrandomized comparative study, the allocation of advanced/terminal phase patients to either home or hospital was based on pragmatic considerations. Analysis focused on resources use, events requiring blood unit transfusions or parenteral therapy, patient-reported symptom burden, mean weekly cost of care (MWC), cost-minimization difference, and incremental cost-effectiveness ratio (ICER).
Results: Of 119 patients, 59 patients cared at home were more debilitated and had a shorter survival than the 60 in hospital group (p = 0.001). Nevertheless, symptom burden was similar in both groups. At home the mean weekly number of transfusions (1.45) was lower than that at hospital (2.77). Higher rate of infections occurred at hospital (54%) versus home (21%; <0.001). MWC for hospitalization was significantly higher in a 3:1 ratio versus home care. Compared with hospital, domiciliary assistance produced a weekly saving of € 2314.9 for the health provider, with a charge of € 85.9 for the family, and was cost-effective by an ICER of € -7013.9 of prevented days of care for avoided infections.
Conclusions: Current findings suggest that costs of early palliative home care for patients with hematologic malignancies are lower than standard hospital care costs. Domiciliary assistance may also be cost-effective by reducing the number of days to treat infections.
The coronavirus disease 2019 (COVID-19) pandemic has refocused our attention on health care disparities affecting patients of color, with a growing body of literature focused on the etiology of these disparities and strategies to eliminate their effects. In considering the unique impact COVID-19 is having on African American communities, added measure must be given to ensure for sensitivity, empathy, and supportive guidance in medical decision making among African American patients faced with critical illness secondary to COVID-19. In this article, we explore the applications of cultural humility over cultural competency in optimizing the care we provide to African American patients faced with critical health care decisions during this pandemic. In turn, we charge one another as health care providers to consider how ethical principles and guidance can be applied to honor African American patients' unique stories and experiences.
BACKGROUND: Clear communication between patients, families, and health-care providers is imperative to maximize patient outcomes, particularly for patients diagnosed with incurable cancer who require prompt engagement in decision-making. In response to the need to engage in quality patient-centered communication, an interprofessional team, representing medicine, nursing, social work, spiritual care, and clinical psychology, explored extant literature and developed a simple, single-page communication guide that summarizes the prognosis for patients with incurable cancers. The tool was specifically designed to enhance communication for patients, families, and across all members of the treatment and patient support team.
PURPOSE: The purpose of this pilot study was to evaluate the impact of the communication guide on patient's accurate understanding of prognosis and the feasibility and acceptability of the intervention.
METHODS: The study employed a sequential explanatory mixed-method design. Using pre- and post-tests, participants completed a prognosis and treatment perception survey and were randomized into control or intervention groups based on preference for prognostic information. The oncologist utilized the communication guide with the participants in the intervention group. Finally, 6-week post-test surveys were completed, followed by an exit interview.
RESULTS: Key findings revealed participants prefer receiving detailed information about prognosis and have differing perceptions compared to the oncologists. Understandings of prognosis for patients and oncologists became more congruent following use of the communication guide. Participants found the tool useful and helpful.
CONCLUSIONS: The communication tool serves as a promising mechanism to enhance patient-centered communication about prognosis for patients with incurable cancer.
OBJECTIVE: Utilize simulation to evaluate if living wills (LW) or POLST achieves goal concordant Care (GCC) in a medical crisis.
METHODS: Nurses and resident-physicians from a single center were randomized to a clinical scenario with a living will (LW), physician orders for life sustaining treatment (POLST) or no document. Primary outcomes were resuscitation decision and time to decision. Secondary outcome was the effect of education.
RESULTS: Total enrollment was 57 and less than 30% received prior training. Types of directives were linked to resuscitation decisions (P = .019). Participants randomized to "No Document" or POLST specifying "CPR" performed resuscitation. If a terminal condition presented with a POLST/ do not resuscitate-comfort measures only (DNR-CMO), 73% resuscitated. The LW or POLST specifying DNR combined with medical support resulted in resuscitations in 29% or more of the scenarios. Documents did not significantly affect median time-to-decision (P = .402) but decisions for "No Document" and POLST/CPR were at least 10 s less than other scenarios. Scenarios involving POLST DNR/Limited Treatment had the highest median time of 43 s. Prior training in LWs and POLST exerted a 10% improvement in decision making (P = .537).
CONCLUSION: GCC was not always achieved with a LW or POLST. This conclusion supports prior research identifying problems with the interpretation and discordance with LW's and POLST.
L'expérience clinique de l'isolement protecteur en hématologie est un temps vécu et "imposé", une expérience humaine liant isolement et solitude. Entre envie et peur de l'extérieur, besoins d'avoir et de freiner les relations, sentiment de pénibilité et de plaisance à penser à soi, parmi tant d'autres ressentis, ces patients vivent des phases particulières dans cette chambre. Là, réside peut-être toute la complexité de la solitude.
Background: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients’ medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents’ LYOL.
Methods: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent’s LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach’s alpha.
Results: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed =5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item” Given a copy of their treatment plan” highest (mean 3.96), whereas “encouragement to get to a specific group or class to cope with the condition” (mean 1.74) was rated lowest. Cronbach’s alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett’s test for sphericity p < 0.001), with items’ factor loadings ranging from 0.46 to 0.82.
Conclusions: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies.
The purpose of this quality improvement initiative was to analyze how nurses record their workload in the GRASP Workload Measurement System and document the end-of-life nursing care provided to imminently dying patients. The analysis was done in conformity with the Comfort Measures Order Set in our hospital. Nursing documentation was examined (n = 4 patient records) covering 15 oncology nursing shifts. Nurses are expected to complete the GRASP tool after each shift for all the patients in their care. It is presumed that nurses' workload data will be reported accurately and reliably, as well as interrelate with their nursing documentation. Workload audits are conducted routinely to ensure accuracy. Interrater Reliability Monitoring was used to analyze the degree of agreement between the ratings performed on the audit of the completed GRASP tool and the nursing documentation on end-of-life care delivered. The GRASP compliance rate was 66.6% and GRASP-documentation accuracy rate was 60-70%. These observations were below the established target of 90%. The results provide insight regarding any gaps between documentation and GRASP at end of life.