Supporting physicians in Intensive Care Units (ICU)s as they face dying patients at unprecedented levels due to the COVID-19 pandemic is critical. Amidst a dearth of such data and guided by evidence that nurses in ICUs experience personal, professional and existential issues in similar conditions, a systematic scoping review (SSR) is proposed to evaluate prevailing accounts of physicians facing dying patients in ICUs through the lens of Personhood. Such data would enhance understanding and guide the provision of better support for ICU physicians.
INTRODUCTION: Little is known about the effects of HIV reservoir research at the end of life on staff members involved. Staff members' perceptions and experiences were assessed related to their involvement in the Last Gift, a rapid autopsy study at the University of California San Diego enrolling people living with HIV who are terminally ill and have a desire to contribute to HIV cure-related research.
METHODS: Two focus group discussions consisting of clinical (n = 7) and rapid research autopsy (n = 8) staff members were conducted to understand the perspectives of staff members and the impact the Last Gift rapid autopsy study had on them. The total sample consisted of 66.7% females and 33.3% males and was ethnically diverse (66.7% Caucasian, 6.7% African American, 20.0% Asian descent, 6.7% Hispanic descent and American Indian) with a range of experience in the HIV field from 1 year to 30 years.
RESULTS: Qualitative focus group data revealed five major themes underlying study staff members' multilayered mental and practical involvement: 1) positive perceptions of the Last Gift study, with sub-themes including Last Gift study participants' altruism, fulfillment, and control at the end of life, 2) perceptions of staff members' close involvement in the Last Gift study, with sub-themes related to staff members' cognitive processing, self-actualization and fulfillment, stress management and resilience, coping mechanisms, and gratitude toward Last Gift participants and toward the study itself, 3) considerations for successful and sustainable study implementation, such as ethical awareness and sustained community and patient engagement, 4) collaborative learning and organizational processes and the value of interdependence between staff members, and 5) considerations for potential study scale-up at other clinical research sites.
DISCUSSION: Understanding staff members' nuanced emotional and procedural experiences is crucial to the Last Gift study's sustainability and will inform similar cure research studies conducted with people living with HIV at the end of life. The study's potential reproducibility depends on a robust research infrastructure with established, interdependent clinical and rapid autopsy teams, continuous community engagement, and an ethical and well-informed engagement process with people living with HIV.
OBJECTIVE: To explore family members' experiences of advance care planning in nursing homes.
DESIGN: Individual interviews. Thematic analysis.
SETTING: Four nursing homes in Sweden.
SUBJECTS: Eighteen family members of deceased nursing home patients.
MAIN OUTCOME MEASURES: Family members' experiences of advance care planning in nursing homes.
RESULTS: Family members' experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient's preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient's wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician's absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions.
CONCLUSION: Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patient's wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning. Key points Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited. Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking. Significance of small details, perceive to symbolize staff competence and respect for patient autonomy. To limit family members' feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.
OBJECTIVES: This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN: This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTING: All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS: We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS: Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS: Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
Posttraumatic stress disorder (PTSD) and prolonged grief disorder (PGD) are well-documented in parentally bereaved adolescents. Whether or not the parent's death is perceived as traumatic may be influenced by several end-of-life-related factors. This study aimed to examine the associations between end-of-life-related factors, symptoms of posttraumatic stress disorder (PTSD), symptoms of prolonged grief disorder and PGD, and the association between PTSD and PGD. Mann-Whitney U tests and Spearman correlation were used to analyze the relationships between end-of-life-related factors, PTSD, and PGD. Regretting one's decision to be present or not present at the time of death resulted in a significant difference in self-reported scores for PTSD, but not PGD.
BACKGROUND: With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care.
METHODS: The aim of this study was to describe patients' experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014-2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies.
RESULTS: The findings are synthesized in the main theme: E-health applications - promoting communication on patients' and families' terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients' experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology.
CONCLUSIONS: E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources.
Introduction : Il n’existe que peu de données dans la littérature actuelle sur la manière dont les médecins généralistes vivent le décès de leurs patients. Les principales études sur le sujet sont des travaux qualitatifs. Il manque de travaux quantitatifs pour en dresser un état des lieux exhaustif. L’objectif de cette étude est d’analyser les décès des patients vécus comme difficiles par leur médecin généraliste.
Matériel et méthode : Il s’agissait d’une étude épidémiologique descriptive quantitative transversale. La population étudiée était celle de l’ensemble des médecins généralistes libéraux de la région Nouvelle-Aquitaine. Le critère de jugement principal était le pourcentage de médecins généralistes vivant difficilement le décès de leurs patients.
Résultats : Dans cette étude, 76 % des médecins généralistes vivaient comme difficile le décès de leurs patients. Ils étaient 29 % à ressentir le besoin d’être aidés dans cette situation. Le retentissement professionnel et personnel était présent chez respectivement 37 % et 31 % des médecins. La consommation de médicaments survenait dans 4,8 % de ces situations, celle d’alcool dans 4 % des cas. Les structures d’aides aux généralistes étaient insuffisantes pour 57 % d’entre eux.
Discussion et perspectives : Cette étude a mis en évidence que les médecins généralistes sont très affectés par les décès de leurs patients. Le retentissement émotionnel est intense et pourrait influer sur les soins apportés aux patients. Ces situations sont source de difficultés au cours de l’exercice professionnel comme dans la vie personnelle. Les structures d’aide existantes sont très insuffisantes et méconnues.
Conclusion : Cette étude a permis de dresser un état des lieux de la souffrance des médecins généralistes lors du décès de leurs patients. Il est nécessaire de mieux accompagner les médecins dans cette situation.
Si, dans un premier temps, il peut paraître évident que ce sont les patients qui nous mettent en difficulté à travers le chemin douloureux de la maladie, il s’avère que les quelques cas qui ont engendré chez moi un ressenti de solitude, et par extension de désarroi, étaient tous liés à des incompréhensions avec les autres professionnels de santé en soins palliatifs. Accepter l’exercice d’écrire m’a permis de réfléchir rétroactivement sur les mécanismes en jeu, dans le but de progresser bien sûr, mais aussi d’éviter de nouvelles situations inconfortables.
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J’ai été appelée pendant le confinement, par le personnel de l’Ehpad où j’interviens comme bénévole d’accompagnement dans le cadre de Jalmalv, pour accompagner une personne en fin d’existence. Ce même jour, lorsque je suis allée dans l’unité protégée, c’était comme si l’on entrait dans un monde complètement inconnu, un peu comme si l’on était sur la lune, ou lorsqu’on voit les visages des costumés du carnaval de Venise ou bien des clowns dans le cirque, tous avec une expression figée. Du personnel, je ne reconnaissais personne : mes amies que je connais depuis cinq ans ! Chacun·e occupé·e par sa tâche de soins… tous fidèles au poste !
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BACKGROUND: Parents with advanced cancer struggle initiating conversations with their children about the cancer. When parents do not have the tools to talk with their children, they silently watch their children attempt to navigate their illness but can only wonder but not know what their children are thinking. The objective of the current study is to describe, from parents living with advanced cancer, the worries and concerns parents wonder their child holds, but has not spoken, about the parent's cancer.
METHODS: Twenty-seven parents with incurable cancer enrolled in a 5 session telephone intervention pilot study during which they were asked, "What questions do you have about what your child is thinking or feeling about the cancer?" Data were transcribed and inductively coded using content analysis methods adapted from grounded theory.
RESULTS: Analysis yielded 14 categories of parent concerns organized into 6 larger conceptual domains: Being Concerned and Scared about My Cancer; Worrying about Me; Changing How We Talk and Live Day-to-Day; Not Knowing What Will Happen; Having Unanswered Questions about My Cancer; and Understanding My Disease Is Terminal.
CONCLUSIONS: Study results add to our understanding of the magnitude of the emotional burden parents with advanced cancer carry as they struggle to balance their diagnosis and treatment and their life as parents.
BACKGROUND: Palliative care is an approach that improves the quality of life of patients and families facing challenges associated with life-threatening illness. In order to effectively deliver palliative care, patient and caregiver priorities need to be incorporated in advanced cancer care.
AIM: This study identified experiences of patients living with advanced colorectal cancer and their caregivers to inform the development of an early palliative care pathway.
DESIGN: Qualitative patient-oriented study.
SETTINGS/PARTICIPANTS: Patients receiving care at two cancer centres were interviewed using semistructured telephone interviews to explore their experiences with cancer care services received prior to a new developed pathway. Interviews were transcribed verbatim, and the data were thematically analysed.
RESULTS: From our study, we identified gaps in advanced cancer care that would benefit from an early palliative approach to care. 15 patients and 7 caregivers from Edmonton and Calgary were interviewed over the phone. Participants identified the following gaps in advanced cancer care: poor communication of diagnosis, lack of communication between healthcare providers, role and involvement of the family physician, lack of understanding of palliative care and advance care planning.
CONCLUSIONS: Early palliative approaches to care should consider consistent and routine delivery of palliative care information, collaborations among different disciplines such as oncology, primary care and palliative care, and engagement of patients and family caregivers in the development of care pathways.
Background: Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall purpose of this study is to describe which aspects of HBPC were the most meaningful to patients with COPD, and their caregivers.
Methods: Through a descriptive design with narrative analysis methodology, we interviewed COPD patients and their caregivers to investigate their experience of HBPC received in the 30 days post hospitalization for a COPD exacerbation. A thematic analysis was conducted and the patient and caregiver interviews were analyzed in dyad using thematic analysis.
Results: A total of 10 dyads were interviewed. Patients and their caregivers perceived 3 times as many facilitators as barriers of receiving home-based palliative care in the 30 days post hospitalization for a COPD exacerbation. The outcomes of this study provide information that describes the aspects of HBPC that patients and their caregivers found most meaningful.
Conclusion: An understanding of the most meaningful aspects of HBPC from the perspectives of the patients with COPD and their caregivers can be used to inform the development of the best model for HBPC for this patient population.
CONTEXT: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.
OBJECTIVE: Examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common, distressing patient symptoms near the end of life.
METHODS: Secondary analysis of prospective, cohort study of 169 patients with advanced cancer and their family caregivers were analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g. home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.
RESULTS: Hospice care was significantly, positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 versus 8.96; psychological responses: 29.85 versus 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and were associated with the most fear and helplessness among caregivers.
CONCLUSION: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to "scary" patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common, distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.
INTRODUCTION: Patients with life-threatening diseases have reportedly end-of-life experiences that are perceived positively. Loved ones and healthcare personnel may mistakenly interpret the phenomena as confusion and patients can be reluctant to talk about it due to fear of ridicule. Studies addressing patients directly are scarce and there is a lack of studies from highly secular countries. The aim was to establish whether end-of-life experiences are present among patients, oriented in time, place and person and receiving palliative end-of-life care in one of the world's most secular countries. If present, examine the content and patients' subjective experiences.
DESIGN: Qualitative design with semi-structured, in-depth interviews. 25 participants, receiving end-of-life palliative care at home or in a hospice inpatient unit.
RESULTS: Patients were interviewed on 1-3 consecutive occasions. 16/25 patients reported end-of-life experiences of which the majority were perceived to be positive. Four themes were identified: vivid dreams while asleep, experiences while awake, references to medical circumstances and communication about end-of-life experiences. Prevalent content was deceased and living loved ones and journeys. Some patients distinguished between hallucinations/nightmares and end-of-life experiences.
CONCLUSIONS: End-of-life experiences are present among oriented patients in a highly secular country and can have a profound positive impact, which warrants clinical attention. Education for healthcare personnel about end-of-life experiences is needed in order to support patients and loved ones and not mistakenly medicalize. Further directions for research could be to study the experiences of the phenomenon among health care personnel in the same context, which could strengthen the present findings.
Anne-Dauphine Julliand a perdu ses deux filles, Thaïs et Azylis, d’une maladie orpheline.
"J’ai beaucoup souffert et je souffre encore, écrit-elle. Mais j’ai appris la consolation, ce délicat rapport à l’autre: s’approcher, toucher, parler. »
Grâce à des scènes vécues, Anne-Dauphine partage ses réflexions qui touchent juste. Si elle évoque bien sûr sa famille, son livre est aussi un hommage à tous les consolants : une soeur qui vous prend dans les bras, une infirmière qui s’assoit quelques minutes au bord du lit et prend juste le temps « d’être là ».
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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.
En mars 2015, Naja Marie Aidt a perdu son fils de vingt-cinq ans, Carl, dans un tragique accident. Le livre qu'elle a écrit fait la chronique des premières années qui ont suivi cet appel téléphonique qui l'a dévastée en ta main, que j'embrassais avec ma bouche vivante et chaude". tant que mère et en tant que femme. C'est à la fois un récit sobre de la vie après la perte d'un enfant ? la façon dont le chagrin change le rapport à la réalité, aux proches, au temps ? et une exploration de la puissance de la langue et de la littérature, à partir de nombreux textes qui évoquent le deuil, la perte et l'amour.
Cet ouvrage aborde la question délicate des frères et soeurs d'enfant gravement malade ou atteint d'un handicap. Des membres de fratries témoignent de leur vécu et des émotions qui les traversent. En parallèle, des experts apportent des pistes de réflexion afin de mieux répondre aux besoins affectifs et relationnels de ces enfants.
In nursing homes, discussions between family members and staff regarding the end of life for residents with cognitive impairment are crucial to the choice of treatment and care consistent with residents' wishes. However, family members experience burden in such discussions, and communication with staff remains inadequate. The purpose of this qualitative descriptive study was to elucidate the meaning of continuous end-of-life discussion for family members. Data were collected using semistructured individual interviews. Thirteen family members of residents from 3 nursing homes in Kyoto, Japan, participated in the study. Data were analyzed using thematic analysis, which focused on both explicit and implicit meanings. Four themes emerged regarding the experience of end-of-life discussion: “the end of life soaking in,” “hardship of making the decision to end my family member's life,” “wavering thoughts about decisions made and actions taken,” and “feeling a sense of participation about the care.” Family members had come to accept the deaths of residents through continuous discussion and experienced strong conflict in facing the death of their family members. Moreover, staff members should understand family members' beliefs and the burden they experience in facing residents' death.