BACKGROUND: Early palliative care consultation ("PCC") to discuss goals-of-care benefits seriously ill patients. Risk factor profiles associated with the timing of conversations in hospitals, where late conversations most likely occur, are needed.
OBJECTIVE: To identify risk factor patient profiles associated with PCC timing before death.
METHODS: Secondary analysis of an observational study was conducted at an urban, academic medical center. Patients aged 18 years and older admitted to the medical center, who had PCC, and died July 1, 2014 to October 31, 2016, were included. Patients admitted for childbirth or rehabilitationand patients whose date of death was unknown were excluded. Classification and Regression Tree modeling was employed using demographic and clinical variables.
RESULTS: Of 1141 patients, 54% had PCC "close to death" (0-14 days before death); 26% had PCC 15 to 60 days before death; 21% had PCC >60 days before death (median 13 days before death). Variables associated with receiving PCC close to death included being Hispanic or "Other" race/ethnicity intensive care patients with extreme illness severity (85%), with age <46 or >75 increasing this probability (98%). Intensive care patients with extreme illness severity were also likely to receive PCC close to death (64%) as were 50% of intensive care patients with less than extreme illness severity.
CONCLUSIONS: A majority of patients received PCC close to death. A complex set of variable interactions were associated with PCC timing. A systematic process for engaging patients with PCC earlier in the care continuum, and in intensive care regardless of illness severity, is needed.
Controlled donation after circulatory death (cDCD) occurs after a decision to withdraw life-sustaining treatment (WLST) and subsequent family approach and approval for donation. We currently lack data on factors that impact the decision-making process on WLST and whether time from admission to family approach, influences family consent rates. Such insights could be important in improving the clinical practice of potential cDCD donors. In a prospective multicenter observational study, we evaluated the impact of timing and of the clinical factors during the end-of-life decision-making process in potential cDCD donors. Characteristics and medication use, of 409 potential cDCD donors admitted to the intensive care units (ICU), were assessed. End-of-life decision-making was made after a mean time of 97 h after ICU admission and mostly during the day. Intracranial hemorrhage or ischemic stroke and a high APACHE IV score were associated with a short decision-making process. Preserved brainstem reflexes, high Glasgow Coma Scale scores or cerebral infections were associated with longer time to decision-making. Our data also suggest that the organ donation request could be made shortly after the decision to stop active treatment and consent rates were not influenced by day- or nighttime or by the duration of the ICU stay.
Temporality, occupation, and relationships are identified as discrete factors that impact quality of life for individuals at the end of life and those around them. However, scholars, practitioners, and educators require insights regarding whether and how interactions between these factors shape this quality of life. This study is framed by an understanding that meaning is negotiated between people through social interaction and occupational engagement in temporal contexts. We conducted in-depth interviews with 9 patients and 10 family members, incorporating the Pictor visual elicitation technique. Analysis was conducted through an iterative process involving open and selective coding. Findings are described as three main processes: (a) experiences of temporal rupture, (b) diminished significance of clock time, and (c) shifts in occupational priorities. Participants’ perspectives may help carers understand how to foster positive temporal experiences and quality of life for patients and those who love them.
Background: Communication and shared decision-making (SDM) are essential to patient-centered care. Hospital-based palliative care with patients with limited health literacy (LHL) poses particular demands on communication. In this context, patients’ emotions and vulnerable condition impact their skills to obtain, understand, process and apply information about health and healthcare even more. If healthcare providers (HCPs) meet these demands, it could enhance communication. In this study, HCPs were interviewed and asked for their strategies, barriers and suggestions for improvement regarding communication and SDM with LHL patients in hospital-based palliative care.
Methods: qualitative interview study was conducted in 2018 in four Dutch hospitals with 17 HCPs—11 physicians and 6 nurses. Transcripts were analyzed using thematic analysis.
Results: In general HCPs recognized limited literacy as a concept, however, they did not recognize limited health literacy. Regarding SDM some HCPs were strong advocates, others did not believe in SDM as a concept and perceived it as unfeasible. Furthermore, five themes, acting as either strategies, barriers or suggestions for improvement emerged from the interviews: 1) time management; 2) HCPs’ communication skills; 3) information tailoring; 4) characteristics of patients and significant others; 5) the content of the medical information.
Conclusions: According to HCPs, more time to communicate with their patients could resolve the most prominent barriers emerged from this study. Further research should investigate the organizational possibilities for this and the actual effectiveness of additional time on effective communication and SDM. Additionally, more awareness for the concept of LHL is needed as a precondition for recognizing LHL. Furthermore, future research should be directed towards opportunities for tailoring communication, and the extent to which limited knowledge and complex information affect communication and SDM. This study provides first insights into perspectives of HCPs, indicating directions for research on communication, SDM and LHL in hospital-based palliative care.
Objective: We studied if preferences about end-of-life care of people having an advance directive (AD) stay stable over time and if (in) stability is associated with health status.
Methods: A longitudinal cohort study with a population owning different types of ADs (n = 4638). Respondents repeatedly answered questionnaires between 2005-2010. Using hypothetical scenarios about advanced cancer and dementia we assessed preferences for continuing or forgoing resuscitation, mechanical ventilation, artificial nutrition and antibiotics. Using generalized estimated equations we analysed whether life-events and quality of life influenced changes in preferences.
Results: The proportion of respondents with stable preferences ranged from 67 to 98 %. Preferences were most stable concerning resuscitation and least stable concerning mechanical ventilation. In only a few instances we found life-events or a change in quality of life could both increase or decrease odds to change preferences.
Conclusion: Preferences concerning continuing or forgoing treatment at the end of life are stable for a majority of people with ADs, which supports their validity.
Les uns et les autres ont des temps différents et des représentations très dissemblables du temps qui reste. Comment peuvent-ils se rencontrer ? Ce qui se passe entre le malade et celui qui prend soin de lui n'est pas une simple relation, laquelle n'exige qu'une coïncidence dans l'espace et un échange le plus souvent langagier. Ce qui se passe s'appelle une rencontre qui, en plus, exige que le rencontrant et le rencontré partagent ici et maintenant le même présent. Ce qui caractérise la patience, c'est la déprise de soi-même et de ce qui constitue le tissu de chaque être : le temps.
Au coeur de l'accompagnement en soins palliatifs la question du temps et de la temporalité de chacun prend toute son importance. Il y a de nombreuses manières d'exprimer le passage du temps d'une personne et d'un moment à l'autre. "Au jour le jour", disent souvent les patients. "A toute à l'heure", promettent les soignants. Quant aux familles, elles éprouvent souvent le temps qui reste à vivre dans l'angoisse et l'ambivalence. Pour le psychologue il s'agit de concilier toutes les perceptions et d'en révéler la cohérence.
La rupture du temps linéaire est engendrée par l'annonce du diagnostic. Nous interrogeons la possibilité d'un temps pour la pensée soignante dans le temps de l'institution. Nous envisageons l'idée d'une harmonie de la temporalité de la famille et du soignant. Sans oublier l'impact du temps économique de l'institution sur la pratique soignante et la temporalité du patient. La mort est singulière et signe la fin d'une vie, cela suppose de prendre le temps et de lui laisser le temps.
Que peut dire un accompagnant sur le temps ? A qui appartient ce temps de l'accompagnement ?
Accompagnant en soins palliatifs et en Ehpad, je dirai d'emblée que le temps de nos rencontres, dans chacun de ces services, est assez différent. Je ne sais pas s'il y a urgence du temps car accompagner est d'abord un travail sur le rythme ; sur le rythme de la personne que l'on accompagne, sur notre rythme aussi que l'on abandonne pour se caler sur le rythme de l'autre. Quelquefois il faut faire un effort pour ne pas être tenté de brûler les étapes et imaginer "gagner un temps précieux à mes yeux" oubliant respecter le temps de l'autre. L'après-midi où j'accompagne, je suis un peu hors du temps, hors de mon temps, car mon temps a un rythme différent.
Une question éthique autour de ce qui s'engage dans le soin, son essence même : la rencontre de personnes prises dans un mouvement de l'un vers l'autre. Entre l'accélération pour les soignants et la décélération pour les soignés, comment retrouver un espace pour la relation ? Car si le temps apparaît souvent comme une impossibilité, on peut penser des oasis de décélération qui nous permettent de croire que nos identités sont ouvertes à de vastes champs de possibles.
Vieillir demande de construire de nouvelles normes de vie et de nouvelles valeurs. Cela exige d'être soi, d'avoir le temps et son temps à soi. Les différences du durée entre l'état normal et la crise pathologique tendent à s'amenuiser, et les crises sont de plus en plus fréquentes. C'est le rapport au temps et aux normes de vie qui est profondément modifié quand on vieillit. Réfléchir à la hierarchisation de ses désirs, c'est être conscient de ce qui est essentiel pour soi et ce qui l'est moins.
En équipe mobile d'accompagnement et de soins palliatifs, nous sommes souvent à la croisée de différentes temporalités, témoins de décalages pouvant engendrer des conflits, des non-dits et des "trop-dits". Notre rôle est de tenter de les atténuer en amenant chaque intervenant à en prendre conscience pour ajuster au mieux l'accompagnement effectué auprès de la personne malade et ainsi respecter le temps de l'autre.
Un engagement dans la durée pose des questions et mobilise des énergies. La fatigue, voire l'épuisement, s'invite. On peut explorer la question de la fatigue en cherchant à discerner les critères d'une "bonne" et d'une "mauvaise" fatigue, puis essayer de repérer des racines à cette "mauvaise fatigue". Enfin, s'inspirer d'un certain type de repos issu du Shabbat de la tradition biblique.
Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination (“nonbillable” time), but the scope, time per patient, and ratio of nonbillable to billable (NB:B) minutes are unknown. This information is crucial to designing new PPO outpatient clinics and advocating for appropriate personnel, physician time, and resources. Our objectives were to quantify nonbillable time and evaluate demographic or disease-based associations.
Methods: A single-institution one-day PPO clinic was started in July 2017. All encounters were tracked for 11 months. Administrative and PPO inpatient time were excluded. Billable and nonbillable minutes were recorded daily. Ratios of NB:B minutes by patient demographics and clinical factors were calculated using descriptive statistics and multivariate modeling.
Results: Ninety-five patients were included [solid tumors (42, 44%), brain tumors (33, 35%), and leukemia/lymphoma (20, 21%)]. PPO completed billable visits on 52 of 95 (55%) patients and assisted without billing in the care of 43 patients (45%). Twenty-four (25%) patients were deceased. Overall NB:B ratio was 1.04 and differed among diagnoses (leukemia/lymphoma 2.5, solid tumor 0.9, and brain tumor 0.8). Deceased patients had a higher ratio of NB:B minutes than alive patients (1.9 vs. 0.8, p = 0.012). Billable and nonbillable minutes both increased over time.
Conclusions: Care coordination in a PPO clinic is time intensive and grows with clinic volume. When devising a PPO outpatient program, this NB:B ratio should be accounted for in clinician time and personnel devoted to patient and family assistance.
Background: When patients are likely to die in the coming hours or days, families often want prognostic information. Prognostic uncertainty and a lack of end-of-life communication training make these conversations challenging.
Aim: The objective of this study is to understand how clinicians and the relatives/friends of patients at the very end of life manage uncertainty and reference time in prognostic conversations.
Design: Conversation analysis of audio-recorded conversations between clinicians and the relatives/friends of hospice inpatients.
Setting/participants: Experienced palliative care clinicians and relatives/friends of imminently dying hospice inpatients. Twenty-three recorded conversations involved prognostic talk and were included in the analysis.
Results: Requests for prognostic information were initiated by families in the majority of conversations. Clinicians responded using categorical time references such as ‘days’, allowing the provision of prognostic estimates without giving a precise time. Explicit terms such as ‘dying’ were rare during prognostic discussions. Instead, references to time were understood as relating to prognosis. Relatives displayed their awareness of prognostic uncertainty when requesting prognostic information, providing clinicians with ‘permission’ to be uncertain. In response, clinicians often stated their uncertainty explicitly, but presented evidence for their prognostic estimates, based on changes to the patient’s function previously discussed with the family.
Conclusion: Prognostic uncertainty was managed collaboratively by clinicians and families. Clinicians were able to provide prognostic estimates while being honest about the related uncertainty, in part because relatives displayed their awareness of uncertainty within their requests. The conversation analytic method identified contributions of both clinicians and families, and identified strategies based on real interactions, which could inform communication training.
BACKGROUND: Nurses' end of life (EoL) care focuses on direct (eg, physical) and indirect (e,g, coordination) care. Little is known about how much time nurses actually devote to these activities and if activities change due to support by specialized palliative care (SPC) in hospitalized patients.
AIMS: (1) Comparing care time for EoL patients receiving SPC to usual palliative care (UPC);(2) Comparing time spent for direct/indirect care in the SPC group before and after SPC.
METHODS: Retrospective observational study; nursing care time for EoL patients based on tacs® data using nonparametric and parametric tests. The Swiss data method tacs measures (in)direct nursing care time for monitoring and cost analyses.
RESULTS: Analysis of tacs® data (UPC, n = 642; SPC, n = 104) during hospitalization before death in 2015. Overall, SPC patients had higher tacs® than UPC patients by 40 direct (95% confidence interval [CI]: 5.7-75, P = .023) and 14 indirect tacs® (95% CI: 6.0-23, P < .001). No difference for tacs® by day, as SPC patients were treated for a longer time (mean number of days 7.2 vs 16, P < .001).Subanalysis for SPC patients showed increased direct care time on the day of and after SPC (P < .001), whereas indirect care time increased only on the day of SPC.
CONCLUSIONS: This study gives insight into nurses' time for (in)direct care activities with/without SPC before death. The higher (in)direct nursing care time in SPC patients compared to UPC may reflect higher complexity. Consensus-based measurements to monitor nurses' care activities may be helpful for benchmarking or reimbursement analysis.
Les pages qui suivent reprennent essentiellement les propos des auteurs tenus lors d'une conférence présentée dans le cadre du congrès annuel de l'Association québécoise de soins palliatifs (AQSP), lequel s'est tenu à Montréal le 9 mai 2019. La présentation s'intitulait Repères éthiques pour surmonter les paradoxes dans le soin. Elle s'inscrivait sous l'égide de la Causerie Danielle-Blondeau, dans une volonté d'approfondir des thématiques pertinentes au regard d'enjeux actuels. Nous avons proposé, au moyen de cet atelier post-Causerie, des pistes de réflexion sur le thème de la temporalité et des soins palliatifs.
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Entrer dans un service de réanimation pédiatrique, c'est aller "dedans". Là-bas, on est dedans ou dehors, pas de nuance, pas d'entre-deux... a priori. De l'extérieur, les événements peuvent paraître tranchés, les décisions assurées. On parle en termes de réussite oou d'échec, de vie ou de mort.
Proposer de l'art-thérapie en soins palliatifs, c'est amener le malade à vivre une aventure créative qui le place dans un autre rapport à la vie. Cette "aventure" permet de changer son rapport au temps qui reste, d'un temps subi vers un temps choisi. On observe une modification du rapport à soi, en passant de la personne malade vers la personne en création. Enfin, une transformation du rapport aux soignants et aux proches peut s'esquisser.
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.