Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan.
Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis.
Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients’ frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress.
Conclusion: Patient dyads’ preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people’s medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia–Pacific region.
Developing solid communication-based partnerships through obtaining illness narratives allows for an understanding of patients' social resources, values, and beliefs and allows an opportunity to provide person-centered care. This study aimed to elicit cocreated illness narratives from persons of color who have serious illness. Twenty patients receiving care for serious illness were interviewed at a large academic medical center. The interviews focused on how illness affected patients' lives and were followed by formation of illness narratives. From the persons living with serious illness, 3 main themes emerged: (1) time, (2) life changes, and (3) family. Participants described how illness did influence their lifestyles and identities but did not define their personhood. Family influence had a lasting effect on participants' values and beliefs, and family presence was viewed as valuable in their current lives. Narratives from persons of color with serious illness can provide an intimate account informing nurses' understanding of patients' illness experiences and may enhance communication between nurses and patients.
PURPOSE: The objectives are to explore the prevalence of DNR orders, the factors influencing them, and the association between DNR signing and health care utilization among advanced cancer patients.
METHODS: This was a retrospective cohort study. Data from cancer decedents in three hospitals in China from January 2016 to December 2017 during their last hospitalization before death were obtained from the electronic medical records system.
RESULTS: In total, 427 cancer patients were included; 59.0% had a DNR order. Patients who had solid tumors, lived in urban areas, had more than one comorbidity, and had more than five symptoms were more likely to have DNR orders. The cut-off of the timing of obtaining a DNR order was 3 days, as determined by the median number of days from the signing of a DNR order to patient death. Patients with early DNR orders (more than 3 days before death) were less likely to be transferred to the intensive care unit and undergo cardiopulmonary resuscitation, tracheal intubation, and ventilation, while they were more likely to be given morphine and psychological support compared with those with late (within 3 days before death) and no orders.
CONCLUSIONS: Advanced cancer patients with solid tumors living in urban areas with more symptoms and comorbidities are relatively more likely to have DNR orders. Early DNR orders are associated with less aggressive procedures and more comfort measures. However, these orders are always signed late. Future studies are needed to better understand the timing of DNR orders.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
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.
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.
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.
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.
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.
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.