Anticipatory grief is a concept commonly used by researchers and clinicians when talking about the experience before the death of a loved one. This article offers a critical perspective on the disciplinary, theoretical and philosophical foundations of three distinct and frequently used conceptualisations of anticipatory grief: Lindemann's, Rando's and one derived from sociology. Lindemann's perspective conceived anticipatory grief as an inevitable component of the grieving experience in the situation of impending death. Rando's perspective views anticipatory grief as a multidimensional that facilitates post-mortem mourning. The third perspective, offered by sociologists, defines anticipatory grief as an experience highly influenced by the social context of the individual. This review explains how these different perspectives influence research and concludes with a reflection for potential future research.
L'auteure, psychologue hospitalière, donne des conseils pour permettre à chacun de trouver sa place d'aidant auprès d'un malade. De l'entrée en soins palliatifs à la phase terminale, elle répond à l'ensemble des problématiques émotionnelles et relationnelles et propose des outils de dialogue pour faire le lien avec les professionnels de santé.
François Lambert, proche de Vincent Lambert, propose son témoignage sur l'euthanasie, le suicide assisté et la fin de vie. Devenu avocat, l'auteur dévoile les coulisses de la lutte entre les membres de sa famille.
Ce livre constitue une enquête sur l'affaire Vincent Lambert, homme en état végétatif autour duquel sa famille se déchire à coups de procédure judiciaire. En révélant les dimensions politique et romanesque de ce drame familial, elle pose également les questions éthiques de la fin de vie, de l'euthanasie et du suicide assisté.
Le dossier contient les articles suivants : documentation, diffusion et recherche : des objectifs pour la revue ; les documentalistes comme partenaire dans la prise en charge des patients en fin de vie ; documentation et soins palliatifs : état des lieux de l’existant ; le thésaurus, un vocabulaire contrôlé pour parler le même langage ;
la recherche documentaire en soins palliatifs ; les médias sociaux : le monde est au bout de nos doigts ; la littérature scientifique française en soins palliatifs : cartographie bibliographique ; Palli@Doc : un point d’entrée unique à l’information en soins palliatifs ; la littérature de jeunesse au service de l’enfant hospitalisé ; se documenter, une ressource essentielle de praticien réflexif ; l’implication des documentalistes dans la recherche documentaire en soins palliatifs.
Pilou, un petit oiseau, vit une vie heureuse dans la ferme, entre ses parents et surtout Paulette, la star de la basse-cour ! Mais voilà, un jour, Paulette tombe malade et c'est toutes les petites habitudes du quotidien qui sont modifiées. C'est que la maladie de Paulette est "trop forte", le docteur ne peut plus la guérir. Face au chagrin de ses proches, Pilou se pose des questions sur la maladie et la mort. Heureusement, toute la basse-cour est là pour accompagner ses derniers jours. Le médecin aide Paulette à mourir sans souffrance grâce à une piqûre. C'est un premier deuil pour Pilou, qui apprendra alors à se souvenir des bons moments pour emporter avec lui "la bonne humeur de Paulette".
Pilou, un petit oiseau, vit une vie heureuse dans la ferme, entre ses parents et surtout Lisette, la star de la basse-cour ! Mais voilà, un jour, Lisette tombe malade et c'est toutes les petites habitudes du quotidien qui sont modifiées. C'est que la maladie de Lisette est "trop forte", le docteur ne peut plus la guérir. Face au chagrin de ses proches, Pilou se pose des questions sur la maladie et la mort. Heureusement, le médecin aide Lisette à ne pas souffrir et toute la basse-cour est là pour accompagner ses derniers jours. C'est un premier deuil pour Pilou, qui apprendra alors à se souvenir des bons moments pour emporter avec lui "la bonne humeur de Lisette".
BACKGROUND: Dedicated identified palliative care beds (IPCB) are unique to France.
AIMS: This study aimed to assess their use and advantages in a medical oncology department of a private provincial hospital.
FINDINGS: Of the last 100 patients who died in the medical oncology department, 57 had an IPCB. Those with an IPCB had a longer final hospital stay and significant advantages for them were access to pain evaluation by nurses and professional psychological support. Opioid use was higher, but not significantly so. There were no significant differences for the presence of close relatives, physiotherapy interventions, social workers or specific anti-cancer treatment in the last 15 days of life.
CONCLUSION: This study shows some advantages for IPCB (treatment of pain, psychologist), which should be further explored. The length of the final hospital stay is controversial.
At the end of life, hospice patients frequently rely on surrogate decision makers (SDMs) for healthcare decisions, which creates anxiety among SDMs. This project evaluated whether an educational intervention to create a plan of care for hospice patients would reduce anxiety among SDMs. Before the intervention, immediately after the intervention, and 2 weeks following the intervention SDM anxiety was measured with the Geriatric Anxiety Scale, State Trait Anxiety Inventory-State Anxiety Scale, and one question about decision-making anxiety. Twelve patients (80±14.7 years) and 18 SDMs (60±12.9 years) completed the intervention. Immediately after the intervention SDMs showed a significant decrease (P=0.003) in anxiety. When anxiety was measured 2 weeks post-intervention, anxiety had increased again, and was no longer significantly different from pre-intervention levels. This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease to SDM anxiety levels.
In recent years, increases in medical technologies in the critical care setting have advanced the practice of medicine, enabling patients to live longer while also creating dilemmas for end-of-life decision-making. Clinicians have increasingly been called on to involve patients and family members in decision-making through a process of shared decision-making (SDM), yet less is known about how SDM plays out in the critical care setting and the ways in which clinicians engage in SDM. Using observational data from 14 months of ethnographic fieldwork in two intensive care units and interviews with 33 family members of 25 critically ill patients and 51 clinicians, I explore how clinicians refer to the choices available in medical decision-making paradoxically as a 'buffet' of choice while they simultaneously recognise that such rhetoric is misaligned with complex and emotional decision-making, often involving pain and suffering. Lastly, this paper considers the role of SDM and the ways in which clinicians push back on the 'buffet' rhetoric and engage in practices to guide families in end-of-life decision-making by granting permission for families to make decisions and validating their decisions to decline treatment when there is an opportunity for more treatment.
BACKGROUND: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.
METHODS: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.
RESULTS: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.
DISCUSSION: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
BACKGROUND: Parents have a constitutionally-protected, fundamental right to make decisions concerning the health and well-being of their children, afforded by the Due Process Clause of the Fourteenth Amendment. However, parental rights are not absolute, and may be curtailed after a finding of parental "unfitness" including perpetration of egregious child abuse/neglect. Court intervention may be necessary to assert "parens patriae" authority to protect a child's well-being. Disagreements over medical care for a child (particularly when parent maltreatment resulted in life-altering clinical conditions and parents are suspected of perpetrating abusive injuries) often pose conflicts of interest. End-of-life decision-making involving abuse perpetrators may be influenced by self-interest, due to potential for escalation of criminal charges.
OBJECTIVE: Discuss medico-legal decision-making for children in child welfare custody using a detailed case example involving a child near-fatally, abusively injured by his parents; review of relevant case law/national legal precedents; and clinical policy statements guiding end-of-life decision-making for pediatric patients.
PARTICIPANTS/SETTING/METHODS: Using an exploratory, quasi-qualitative approach, perceived experiences of purposefully-selected taskforce members identified key themes that informed a care de-escalation protocol, implemented across the state.
RESULTS: Key themes included coordinated communication, expedited legal proceedings, and balancing child's best interest (the right not to suffer for a prolonged period of time or sustain complications) with parents' rights and due process concerns, and informed protocol development.
CONCLUSIONS: Practicable guidance established in the protocol can be theoretically adapted at the local level to address the complexity inherent in end-of-life decision-making for children in custody.
Background: Adults with impaired performance status (PS) often receive immune checkpoint inhibitors (ICIs) for advanced non–small cell lung cancer (NSCLC) despite limited efficacy data and unknown effects on end-of-life care.
Methods: This was a retrospective, single-site study of 237 patients with advanced NSCLC who initiated ICI treatment from 2015 to 2017. Cox regression was used to compare the overall survival (OS) of patients who had impaired PS (=2) at the start of ICI treatment with those who had PS 0 or 1 using Cox regression. Logistic regression was conducted to analyze the association between ICI use in the last 30 days of life and the use of end-of-life health care.
Results: The patient mean age at ICI initiation was 67 years (range, 37-91 years), and 35.4% of patients had PS =2. Most patients (80.8%) received ICI as second-line or later therapy. The median OS was 4.5 months in patients with PS =2 and 14.3 months in those with PS 0 or 1 (hazard ratio, 2.5; P < .0001). Among the patients who died (n = 184), 28.8% who had PS =2 received ICIs in their last 30 days of life compared with 10.8% of those who had PS 0 or 1 (P = .002). Receipt of ICI in the last 30 days of life was associated with decreased hospice referral (odds ratio, 0.29; P = .008) and increased in-hospital deaths (odds ratio, 6.8; P = .001), independent of PS.
Conclusions: Adults with advanced NSCLC and impaired PS experience significantly shorter survival after ICI treatment and receive ICIs near death more often than those with better PS. Receipt of an ICI near death was associated with lower hospice use and an increased risk of death in the hospital. These results underscore the need for high-quality communication about potential tradeoffs of ICIs, particularly among adults receiving ICIs as second-line or later therapy.
BACKGROUND: Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP.
METHODS: Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached.
RESULTS: In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment.
CONCLUSIONS: Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.
The use of long-term and continuous intravenous inotropic support (CIIS) has increased over the past decade. Published evidence indicates that CIIS improves New York Heart Association functional class but does not impact survival. American College of Cardiology/American Heart Association (ACC/AHA) guidelines published in 2013 delineated indications for intravenous inotropic support. Long-term CIIS as palliative therapy (i.e., aim is symptomatic improvement in patients who are not appropriate for surgical therapies) in patients with ACC/AHA Stage D congestive heart failure (CHF) despite optimal medical treatment and device therapy was assigned a Class IIb recommendation (Level of Evidence B).
La mucoviscidose est une maladie chronique dépistée à la naissance qui nécessite un suivi pluridisciplinaire tout au long de la vie. Deux histoires singulières nous guideront dans la réflexion de l’accompagnement de fin de vie. Cela constitue d’abord une étape douloureuse quand il s’agit de renoncer à la transplantation pulmonaire. La personne soignée désire aussi une continuité de soins en lien avec sa philosophie de vie. Le partenariat des soignants avec l’espace éthique et/ou les soins palliatifs de l’hôpital devient un tiers nécessaire à une fin de vie plus apaisée.
OBJECTIVES: We investigated trends in end-of-life hospitalizations among nursing home residents (NHR) over 10 years and looked at differences between age groups and sexes as well as the length of terminal hospital stays.
STUDY DESIGN: Retrospective cohort study based on health insurance claims data of the AOK Bremen/Bremerhaven. All NHR aged 65 years or more who died between 2006 and 2015 were included.
MAIN OUTCOME MEASURES: We assessed the proportions of decedents who were in hospital on the day of death and during the last 3, 7, 14 and 30 days of life, stratified by two-year periods. Multiple logistic regressions were conducted to study changes over time, adjusting for covariates.
RESULTS: A total of 10,781 decedents were included (mean age 86.1 years, 72.1 % females). Overall, 29.2 % died in hospital, with a slight decrease from 30.3 % in 2006-2007 to 28.3 % in 2014-2015 (OR 0.86; 95 % CI 0.75-0.98). Of the 3150 terminal hospitalizations, 35.5 % lasted up to 3 days and the mean length of stay decreased from 9.0 (2006-2007) to 7.5 days (2014-2015). When looking at the last 7, 14 and 30 days of life, no changes over time were found. Male sex and younger age were associated with a higher chance of end-of-life hospitalization in almost all analyses.
CONCLUSIONS: End-of-life hospitalizations of NHR are common in Germany. There has been a small decrease during recent years in the proportion of in-hospital deaths, but not of hospitalizations during the last 7, 14 and 30 days of life. This might be explained by shorter durations of hospital stays.
BACKGROUND: Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children's emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying.
AIM: To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent's death.
DESIGN: A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open-ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data.
RESULTS: 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z=-5.767, p<0001). Twenty-two per cent of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an underused resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers.
CONCLUSIONS: Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents and children are needed.
Ethical issues relating to end-stage kidney disease (ESKD) care are increasingly being discussed by clinicians and ethicists but are still infrequently considered at a policy level or in the education and training of health care professionals. In most lower-income countries, access to kidney replacement therapies such as dialysis is not universal, leading to overt or implicit rationing of resources and potential exclusion from care of those who are unable to sustain out-of-pocket payments. These circumstances create significant inequities in access to ESKD care within and between countries and impose emotional and moral burdens on patients, families, and health care workers involved in decision-making and provision of care. End-of-life decision-making in the context of ESKD care in all countries may also create ethical dilemmas for policy makers, professionals, patients, and their families. This review outlines several ethical implications of the complex challenges that arise in the management of ESKD care around the world. We argue that more work is required to develop the ethics of ESKD care, so as to provide ethical guidance in decision-making and education and training for professionals that will support ethical practice in delivery of ESKD care. We briefly review steps that may be required to accomplish this goal, discussing potential barriers and strategies for success.
Recent reports highlight an inconsistent provision of palliative and end-of-life (palliative) care across Australia, particularly in regional, rural and remote areas. Palliative care improves quality of life and the experience of dying, and all people should have equitable access to quality needs-based care as they approach and reach the end of their lives. A palliative approach to care is crucial in rural and remote Australia where there is a reliance for such care on generalist providers amid the challenges of a limited workforce, poorer access, and vast geography. This article describes the development and implementation of the Far West NSW Palliative and End-of-Life Model of Care, a systematic solution that could drive improvement in the provision of a quality palliative approach to care and support from any clinician in a timely manner, for patients, their families and carers anywhere.