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.
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.
[Début de l'article]
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 !
[Début de l'article]
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 ».
[Extrait résumé éditeur]
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.
Little is known about health professionals first experiences of End-of-Life care in hospital. This study aims to understand the psycho-social process that occurs when hospital-based health professionals engage in caring for a dying patient for the first time. We conducted a Grounded Theory study, with 19 health professionals. Challenging professional boundaries is the core category which explains the overall process. The theoretical model we conceptualized evidenced three phases: 1) building a relationship between patient/family and professionals, 2) the disrupting impact and 3) the reaction phase. Our analysis highlighted the initial strong impact of this experience, which brought professionals to perceive emotional suffering and feelings of inadequacy. The new aspect our grounded theory revealed is that all the categories are pertinent to all the professionals involved, therefore they explain important aspects of interprofessional collaboration in End-of-Life care.
INTRODUCTION: Patients with haematological malignancies may not be receiving appropriate referrals to palliative care and continuing to have treatments in the end stages of their disease. This systematic review of qualitative research aimed to synthesise healthcare professionals' (HCPs) views and experiences of palliative care for adult patients with a haematologic malignancy.
METHODS: A systematic search strategy was undertaken across eight databases. Thomas and Harden's approach to thematic analysis guided synthesis on the seventeen included studies. GRADE-GRADEQual guided assessment of confidence in the synthesised findings.
RESULTS: Three analytic themes were identified: (a) "Maybe we can pull another 'rabbit out of the hat'," represents doctors' therapeutic optimism, (b) "To tell or not to tell?" explores doctors' decision-making around introducing palliative care, and (c) "Hospice, home or hospital?" describes HCPs concerns about challenges faced by haematology patients at end of life in terms of transfusion support and risk of catastrophic bleeds.
CONCLUSION: Haematologists value the importance of integrated palliative care but prefer the term "supportive care." Early integration of supportive care alongside active curative treatment should be the model of choice in haematology settings in order to achieve the best outcomes and improved quality of life.
PURPOSE: Young adults (YAs; defined as 18-39 years of age) with advanced cancer are a group for whom standardized age-appropriate palliative care has not been established. The purpose of this study was to explore the YA experience and perceptions of palliative care in an outpatient interdisciplinary palliative care clinic for this population.
PATIENTS AND METHODS: Using an interpretive descriptive design, semistructured interviews were conducted with 12 YAs with advanced cancer who were being seen jointly by a palliative care physician and psychiatrist in an ambulatory palliative care clinic. Interviews explored participants' understanding and experiences of receiving palliative care. Six family members were also interviewed to build on the YA experience. Data collection and analysis occurred concurrently, drawing on the constructivist grounded theory method to analyze the data.
RESULTS: Participants described being referred to and seen in the interdisciplinary palliative care clinic as a conflicting and at times difficult experience because of the feeling of being categorized as palliative as YAs. Even so, there were key aspects associated with the specific palliative care approach that allowed YAs to cope with this new label, leading to a beneficial experience, specifically: provided YAs with time and space to explore the experience of having cancer at a younger age, created repeat opportunities to talk openly with people who "got it," and highlighted the importance of including family support in the care of YAs.
CONCLUSION: YAs who were referred to the interdisciplinary palliative care clinic struggled with the category of palliative care but also found the care they received beneficial. Findings provide an approach to palliative care tailored to YAs with advanced cancer.
AIMS AND OBJECTIVES: To describes nurses' moral experiences with Medical Assistance in Dying in the Canadian context.
BACKGROUND: Nurses perform important roles in Medical Assistance in Dying in Canada and do so within a unique context in which Medical Assistance in Dying is provided through healthcare services and where accessibility is an important principle. International literature indicates that participating in Medical Assistance in Dying can be deeply impactful for nurses and requires a high degree of moral sense-making.
DESIGN: A qualitative interview study guided by Interpretive Description using the COREQ checklist.
RESULTS: Fifty-nine nurses from across Canada participated in the study. The decision to participate in Medical Assistance in Dying was influenced by family and community, professional experience and nurses' proximity to the act of Medical Assistance in Dying. Nurses described a range of deep and sometimes conflicting emotional reactions provoked by Medical Assistance in Dying. Nurses used a number of moral waypoints to make sense of their decision including patient choice, control and certainty; an understanding that it was not about the nurse; a commitment to staying with patients through suffering; consideration of moral consistency; issues related to the afterlife; and the peace and gratitude demonstrated by patients and families.
DISCUSSION: The depth of nurses' intuitional moral responses and their need to make sense of these responses are consistent with Haidt's theory of moral experience in which individuals use reasoning primarily to explain their moral intuition and in which moral change occurs primarily through compassionate social interaction. Further, work on the moral identity of nursing provides robust explanation of how nurses' moral decisions are contextually and relationally mediated and how they seek to guard patient vulnerability, even at their own emotional cost.
CONCLUSION: Medical Assistance in Dying is impactful for nurses, and for some, it requires intensive and ongoing moral sense-making.
RELEVANCE TO CLINICAL PRACTICE: There is a need to provide support for nurses' moral deliberation and emotional well-being in the context of Medical Assistance in Dying care.
The COVID-19 pandemic has disproportionately affected older adults, not only through greater risk of illness and death but also by exacerbating underlying distress related to aging and mortality. Older adults' struggles with loneliness, fear of dying, and the sequelae of untreated medical conditions are viewed through the lens of anticipatory grief, and coping and treatment strategies are offered.