Witnessing end-of-life suffering of loved ones is an underappreciated stressor that may affect caregiver bereavement. We interviewed 61 spousal caregivers of hospice patients who died within the past 6–18 months. Higher rumination about suffering and lower feelings of relief was related to poorer well-being. Rumination by caregivers about end-of-life suffering was an important predictor of depression and complicated grief. Most caregivers viewed the death as at least in part a relief. One important focus of grief support may be to help caregivers find productive ways to avoid rumination and use other forms of coping and to acknowledge feelings of relief.
This paper investigates nursing home staff’s experiences of the “final journey,” when a resident’s dead body is taken to the cold room. The account is based on data from ethnographic fieldwork in two nursing homes in Norway. Accompanying the dead body, staff found themselves “betwixt and between” – an anxious and ambiguous state, bordering on the uncanny. Liminality became a useful theoretical device in the data interpretation. The last offices – a rite of passage governing liminal states – provided a containing structure for this final journey but were not sufficient to banish the uncanny from the staff’s experience.
While end-of-life care (EoLC) priorities for patients dying in the hospital are well-documented, few data characterize needs and experiences of their family members. We conducted thematic analysis of audio recorded interviews of 18 bereaved family members to elucidate these experiences. Participants’ memories were organized into two parent themes: those related to satisfaction with the care received and effective communication; those identifying shortcomings in patient care, hospital-family communication, hospital environment, and care burden on the part of family members. These findings provide insight to enhance services to patients and their families at end-of-life and improve postmortem and bereavement services.
The impostor phenomenon (IP) describes the experience of questioning one's abilities and fearing exposure as an intellectual fraud, despite objective evidence of success. The IP has been identified in high-achieving professionals across a variety of disciplines, including clinical medicine, and can be associated with significant anxiety and psychological distress. In this series, we present three authentic cases that demonstrate how the IP may manifest in palliative care practice. Acknowledging the current emphasis on clinician wellness and burnout, we suggest that the IP may be one important source of distress for many early-career clinicians in palliative care. With the physician as the focus of each case, we explore the difficult emotions faced and highlight how palliative care clinicians may be uniquely vulnerable to the IP. We then identify concrete strategies to help clinicians manage feelings of IP and enhance their professional well-being.
BACKGROUND/AIM: Palliative care (PC) is associated with increased quality of life for individuals with life-limiting illnesses. Despite growing recognition of the need for public advocacy and involvement, data on public perception of PC is limited. We sought to examine patterns of beliefs, socio-demographic differences, and the impact of information source on perceptions of PC.
METHODS: Data were analyzed from the 2018 Health Information National Trends Survey, a representative sample of public knowledge on cancer-related information. Prevalence of perceptions were estimated among adults who self-identified as knowledgeable about PC; multivariable logistic regression invoking stepwise variable selection was used to determine associations with perceptions.
RESULTS: Overall, 42.5% automatically thought of death when thinking about PC, and 31.7% equate PC with hospice care. Lower proportions perceived PC as incompatible with curative medical therapy: 15.1% believed PC means giving up, and 14.5% believed PC requires the discontinuation of other treatments. Perceptions varied by age, race, education attainment, income, and marital status. In adjusted models, source of PC information was not related to differences in PC perception: PC is giving up (P=0.28), requirement to stop curative therapy (P=0.07), and equation with hospice care (P=0.29).
CONCLUSIONS: Six in every 10 American adults knowledgeable about PC have at least one documented misperception, with differential beliefs by socio-demographic groups. Source of information had little impact on PC beliefs. These findings may help focus future measures to educate the public about the role of PC in healthcare and address gaps in knowledge.
PURPOSE: The purpose of this paper is to explore and examine attitudes and perceptions of leaders on application of quality improvement (QI) strategies in a palliative and hospice care organization.
DESIGN/METHODOLOGY/APPROACH: This study employed qualitative research methodology where leaders working in a hospice and palliative care organization were invited to participate in 45-60-min-long semi-structured interview. Interviews were recorded and transcribed verbatim. Qualitative content analysis was utilized to analyze the data collected during participant interviews.
FINDINGS: Seven leaders participated in the interviews. Five themes were developed from data analysis: patient-centered care; continuous QI; leadership involvement and commitment; communication as a foundation for QI; and perceived barriers. Data analysis suggests that use of QI approach in palliative and hospice care enhances the quality of care provided for patients, and can help improve patient satisfaction.
PRACTICAL IMPLICATIONS: Because there is a paucity of research on implementation of QI strategies in hospice and palliative care settings, this research can have wide practical implications. This research can provide useful practical tips to leaders as they work on implementing QI projects in their organization.
ORIGINALITY/VALUE: This manuscript can be of value to leaders, administrators and academicians who are interested in applying QI principles to healthcare processes especially in palliative and hospice care settings. Ability to work with others, solid communication and involvement of employees from all levels can help in streamlining current systems of care.
AIM: To explore and compare acute and long-term care professionals' perspectives about pediatric palliative care.
METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams.
RESULTS: Fifty-eight participants were enrolled. Palliative care definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgments about their patients' quality of life by acute care teams during health events. Personalized care, communication with families and continuity of care were thought to be key elements to improve care.
CONCLUSION: Pediatric palliative care is well recognized throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction.
Les personnes vivant avec le VIH sont considérées comme « âgées » dès l’âge de 50 ans en raison du vieillissement physique prématuré qu’elles subissent. Compte tenu de l’âgisme qui prévaut dans les sociétés occidentales, on peut se demander comment les personnes vivant avec le VIH de 50 ans et plus (PVVIH50+) perçoivent leur vieillissement physique. S’appuyant sur des entrevues réalisées avec 38 PVVIH50+, cet article se propose d’explorer leur expérience du vieillissement à travers trois dimensions, à savoir le vieillissement physique, le sentiment de vieillir et le rapport au vieillissement. L’analyse des données révèle que le vieillissement revêt à la fois un caractère négatif et positif pour les PVVIH50+. Si, comme la population générale, elles tentent de s’en distancier et peinent parfois à l’accepter, le parcours relié au VIH peut en revanche teinter le vieillissement d’une valeur positive, puisque vieillir signifie être encore en vie.
Cet article est le deuxième d'une série de deux qui se voit consacré au concept de présence chez les infirmières en soins palliatifs (SP), dans le cadre de la programmation de recherche SATIN II (SATisfaction, le sens au travail et le bien-être des INfirmières, Fillion et al. 2017). Le premier article visait à mieux comprendre l'expérience vécue de la présence selon le point de vue d'infirmières en SP. La présente étude qualitative a pour sa part comme objectif d'explorer les effets possibles d'une intervention de groupe basée sur le sens et la pleine conscience sur l'expérience de la présence des infirmières. Des entretiens semi-structurés ont été menés auprès de huit infirmières qui oeuvraient exclusivement dans un service de SP après leur participation à l'intervention de groupe. Nos analyses des récits des participantes nous ont permis de catégoriser en deux groupes les effets de l'intervention sur la présence des infirmières, soit les bienfaits de l'intervention : 1) être plus présente à soi ; 2) mieux faire face au stress du quotidien ; 3) revenir au "ici et maintenant" ; 4) accroître sa conscience de la présence et 5) donner sens au prendre soin. Nous avons également soulevé certains défis associés à l'intervention. En conclusion, notre recherche souligne la nécessité d'accompagner les soignants dans leur pratique de la présence et de la pleine conscience dans le cadre de leur travail.
Cet article est le premier d'une série de deux qui abordent l'expérience de la présence d'infirmières en soins palliatifs (SP) dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Dans cette étude qualitative, nous nous sommes intéressées à l'expérience de la présence telle que vécue et comprise par les infirmières en SP au regard des enjeux actuels du travail en SP au Québec. Huit infirmières qui oeuvraient exclusivement dans un service de SP spécialisés ont été rencontrées. Des entretiens semi-structurés ont été conduits avant et après la participation à une intervention de groupe sur le sens et la pleine conscience offerte dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Cet article se limite au temps 1 de l'étude. Notre analyse phénoménologique-interprétative (Smith et Osborn, 2007) a révélé que les participantes vivaient et comprenaient initialement la présence comme 1) une mise au diapason et 2) une rencontre avec l'autre et 3) d'un besoin de maîtriser le temps. Notre étude a également démontré que l'expérience de la présence peut (re)donner un sens au travail en SP. Finalement, nous avons pu élaborer une définition de la présence qui pourrait faciliter l'enseignement, l'apprentissage et le développement de la présence chez les infirmières de toutes disciplines.
Dans ce très beau livre qu’est Le Lambeau de Philippe Lançon, l’écrit sur soi transcende les limites de la pudeur avec une humilité confondante qui permet à son auteur de faire face aux intrusions répétées sur son corps comme sur sa personne, auxquelles se livrent les soignants d’une part et leurs gestes d’autre part. Tout cela sur une période de temps dont on perd avec lui le sens, tant le séjour passé dans les différents lieux de soins échappe à la prise de conscience de la durée. Ainsi s’instaure un hors temps qui donne la mesure de ce que le retour à la vie quand la mort est passée si près implique de réaménagements et de séparations entre soi et soi, y compris celles du soi que la vie hospitalière contribue à reconstituer.
Philippe Lançon est le rescapé, mutilé du visage et des mains, de la tuerie de Charlie Hebdo. Le moment de son arrivée à la Pitié Salpêtrière est daté et datable. Il marque un avant dans son existence dont on peut suivre les différentes étapes selon un itinéraire dans lequel l’enfance et son passé de journaliste de guerre m’ont paru privilégiés, sans égard pour la chronologie des périodes de vie. L’ensemble, également marqué par la présence du frère, des parents et des femmes importantes, peuple la notion d’un avant que la tuerie du 7 janvier 2015, au 10 rue Nicolas Appert dans le 10e arrondissement de Paris, risqua de faire voler en éclats et que l’on voit resurgir par touches successives, accompagnant, alimentant un présent qui s’étire dans l’univers des soignants…
BACKGROUND: Families' experiences of assisted dying are under-investigated and families are rarely considered in clinical guidelines concerning assisted dying.
AIM: To systematically review family experiences of assisted dying.
DESIGN: A systematic literature review using thematic synthesis.
DATA SOURCES: MEDLINE, Embase, CINAHL, AMED (Allied and Complementary Medicine) and PsycINFO databases (January 1992 to February 2019). Studies investigating families' experiences on the practice of legalised assisted dying were included. We excluded studies prior to legalisation within the jurisdiction, secondary data analysis and opinion papers.
RESULTS: Nineteen articles met the inclusion criteria. Publications were derived from four countries: The Netherlands, United States (Oregon, Washington and Vermont), Canada and Switzerland. Dutch studies predominately investigated family involvement in euthanasia, while Swiss and American studies only reported on assisted suicide. Eleven studies had a qualitative design, using predominately in-depth interviews; seven were retrospective surveys. Five analytical themes represented families' experiences in assisted dying: (1) context of the decision, (2) grounding the decision, (3) cognitive and emotional work, (4) experiencing the final farewell and (5) grief and bereavement. The results showed that families can be very involved in supporting patients seeking assisted dying, where open communication is maintained. Family involvement appeared to be influenced by the type of legislation in their country and the families' perception of the social acceptability of assisted dying.
CONCLUSION: Our data confirm that families across all jurisdictions are involved in assisted suicide decision and enactment. Family needs are under-researched, and clinical guidelines should incorporate recommendations about how to consider family needs and how to provide them with evidence-based tailored interventions.
This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers’ coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.
Les services funéraires sont de plus en plus sollicités pour prendre soin des disparus et leur redonner vie et corps. Les mouvements psychiques qui accompagnent ces soins ont longtemps été déniés voire occultés. Pourtant il ne fait pas de doute que la rencontre avec le cadavre mobilise chez ceux qui y sont confrontés une dynamique subjective dont la logique est régie par l’émergence d’un monde fantasmatique propre à chacun. Les auteurs proposent d’explorer à partir d’une écoute clinique les enjeux de cette dynamique et le vécu de ces professionnels qui restent souvent livrés à leur propre solitude.
OBJECTIVES: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers.
AIM: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker.
DESIGN: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data.
PARTICIPANTS: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member's pacemaker.
RESULTS: Four storylines that described, gave meaning to, and contextualized the caregivers' experiences were identified: "I am done. I am not doing it anymore"; "Whatever you decide, I'll support you"; "It is really difficult to watch, but you want to be there"; and "I will not have part of this." Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process.
CONCLUSIONS: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians' knowledge regarding caregivers' experiences facing deactivation of a pacemaker, before and after the patient's death.
Objective: This study aimed to explore the gender differences in wishes and feelings regarding end-of-life care among Japanese elderly people requiring home care services.
Patient/Materials and Methods: This study was a secondary analysis of the qualitative data previously compiled from a total of 102 elderly people living at home. The data was retrospectively collected from the participants' nursing records, which included a designated advance care planning (ACP) form completed between January and July 2015. Out of the 102 participants, 86 men and women who were either living alone or with a spouse were selected for the present analysis. We reviewed the participants' ACP forms based on which of the sentiments on the following checklist were expressed: anxiety about the future, abandonment of control, clinging to current daily life, inadequate support from spouse, and a tendency to delegate decision-making.
Results: The most commonly expressed feeling was abandonment of control, among both men and women. Among elderly people living alone, women were more likely to want to be surrounded by good, caring people when approaching the end of their lives. Among elderly people living with a spouse, women were more likely to want to delegate decision-making to others.
Conclusion: Our results pointed to a gender difference in the attitudes of elderly people toward interactions with the people surrounding them during the end-of-life decision-making process. In order to provide better overall care, health care professionals must come to realize the importance of this gender difference, as it has an impact on the ACP choices made by elderly people living in the community.
OBJECTIVE: Clinicians frequently overestimate survival time among seriously ill patients, and this can result in medical treatment at end of life that does not reflect the patient's preferences. Little is known, however, about the sources of clinicians' optimistic bias in survival estimation. Related work in social networks and experimental psychology demonstrates that psychological states-such as optimism-can transfer from one person to another.
METHODS: We directly observed and audio recorded 189 initial inpatient palliative care consultations among hospitalized patients with advanced cancer. Patients self-reported their level of trait optimism and expectations for survival prognosis prior to the palliative care consultation, and the palliative care clinicians rated their expectations for the patient's survival time following the initial conversation with the patient. We followed patient mortality for 6 months.
RESULTS: Patient optimism was associated with clinician overestimation of their survival in a dose-response relationship. Clinicians were approximately three times as likely to overestimate the survival of patients endorsing both high trait optimism and optimistic ratings of their survival time compared with neither (OR: 2.95; 95% CI: 1.24-7.02). This association was not attenuated by adjustment for age, gender, race, ethnicity, education, income, cancer type, functional status, quality of life, or white blood cell count (ORadj : 3.45; 95% CI: 1.24-9.66).
CONCLUSION: Patients' optimism may have some influence over their clinicians' prognostic judgments.
The article explores the underlying reasons for patients' self-perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview-based study of WTD in patients with advanced cancer and non-cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub-analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self-understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.