BACKGROUND: Persons with dementia may have severe physical and psychological symptoms at the end of life. A therapy dog used in their care can provide comfort and relieve thier anxiety. The dog handler guides the dog during the interaction with the patient.
AIM: To describe the impact of therapy dogs on people with dementia in the final stages of life from the perspective of the dog handler.
METHODS: Interviews were conducted and analysed using qualitative content analysis.
FINDINGS: The dog provides comfort and relief through its presence and by responding to the physical and emotional expressions of the dying person.
CONCLUSIONS: Interactions with dogs were found to have a positive impact on persons with dementia and eased the symptoms associated with end of life according to the dog handlers.
Ce numéro d'Essaim est consacré à la mort et à ses relations avec la psychanalyse. Les contributeurs étudient les points de vue de penseurs tels que Freud ou Lacan et abordent des notions telles que l'entre-deux-morts, la douleur d'exister, la fin de vie, les formes de deuil ou la pulsion de mort.
En 2009, au Portugal, la fondation Calouste Gulbenkian met en place un programme de soins palliatifs à domicile sur le plateau mirandais, dans la région rurale de Tras-os-Montes. Ce projet a inspiré à la journaliste ce livre en deux parties : une réflexion à la fois intime et universelle, aux accents poétiques et philosophiques, sur la fin de vie, suivie des portraits d'individus mourants.
Dans cette enquête ethnographique, l'auteure donne la parole aux détenus en fin de vie pour interroger l'expérience de la maladie grave et le sens de la punition. L'analyse du soin, de la mort et de la peine fondée sur des observations et des entretiens menés auprès des détenus et des professionnels de la surveillance et du soin font émerger deux dimensions fondamentales : l'espace et le temps.
Background: Non-Hispanic black and dementia patients receive more invasive and futile treatment at end of life (EOL) relative to others. Little is known about the relationship between race/ethnicity, dementia, and EOL care quality.
Objective: Identify the relationship between race/ethnicity, dementia, and proxy reporters' evaluation of EOL care quality in older adults.
Design: Latent class analysis (LCA) of national survey data.
Setting: 1588 deceased Medicare beneficiaries age 65 and older from the National Health and Aging Trends Study (2011-2016).
Measurements: LCA identified three types of quality EOL care using nine measures of symptom management, quality of healthcare encounters, and dignified treatment. Race and dementia were primary predictors of EOL care quality type. Adjusted models controlled for decedent education, sex, marital status, age, number of illnesses, number of hospitalizations, self-rated health, place of death, hospice involvement, and proxy relationship to decedent and familiarity with care.
Results: Over 20% of proxies report that dying individuals experienced suboptimal EOL care quality, characterized by pain, sadness, poor communication, and inattention to personal care needs. In adjusted analyses, proxies for non-Hispanic black decedents were less likely to provide negative care assessments than proxies for non-Hispanic white decedents (adjusted odds ratio [AOR]: 0.58; 95% confidence interval [CI]: 0.40-0.86). Proxies for decedents with dementia were less likely to provide negative assessments than proxies for decedents without dementia (AOR: 0.70; 95% CI: 0.51-0.97).
Implications: Efforts to improve EOL care quality are needed. More positive EOL care quality assessments for non-Hispanic Black and dementia decedents appear counterintuitive given research demonstrating that these groups of individuals are likely to have received suboptimal EOL care. Because caregiver expectations for care may differ by decedent race and dementia status, research is needed to explore the role of caregiver expectations for EOL care to explain these paradoxical findings.
Dans le cadre d’une présentation au 8e congrès international du réseau francophone de soins palliatifs pédiatriques à Liège, les auteurs développent une réflexion théorico-clinique sur la fonction du pychologue travaillant auprès d’enfants dont le pronostic vital est menacé. Des entretiens semi-structurés ont été menés auprès des psychologues de liaison de l’Hôpital des Enfants Reine Fabiola à Bruxelles. La réflexion s’articule plus particulièrement autour des difficultés, ressources et besoins des psychologues qui accompagnent les enfants qui risquent de mourir. L’expérience et la formation sont identifiées comme des ressources au même titre que le travail collectif, la solidarité et le lien. Les difficultés concernent certains aspects de la collaboration et de la communication entre soignants. Le cheminement personnel apparaît comme un élément essentiel.
Background: Diverse cultures and social contexts can exhibit different values, religious meaning systems, social norms concerned with social responsibility and interpersonal and family relations. These factors play an essential role in individuals’ decisions and preferences for end-of-life care.
Aims: To explore Taiwanese adults’ perspectives on the influences of cultural, social and contextual factors on preferences for end-of-life care.
Methods: A semi-structured face-to-face interview approach and content analysis were used. A total of 16 adults were recruited.
Findings: Major themes identified as influencing factors included social, cultural and religious aspects, professional and community resources, perceptions about end-of-life services and attitudes toward death and dying.
Discussion: This suggests that people’s end-of-life preferences can be influenced by social and cultural norms, the adequacy of systems for advance care planning, knowledge about advance directives and palliative care, and emotional reactions toward death and dying.
Conclusions: Findings provided insight into adults’ perspectives on how cultural, social norms and religious values and professional support shape individuals’ beliefs and attitudes toward death and dying as well as in end-of-life decision making. These findings contribute to our understanding of adults’ end-of-life preferences and provide guidance for health professionals and communities in assisting Taiwanese people plan for the end of life.
CONTEXT: Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice.
OBJECTIVES: This study aimed to identify barriers to and facilitators of the end-of-life decision-making process as perceived by neonatologists and nurses.
METHODS: We conducted semi-structured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous end-of-life decision-making processes. Two researchers independently analysed the data, using thematic content analysis to extract and summarize barriers and facilitators.
RESULTS: Barriers and facilitators were found at three distinct levels: the case-specific context (e.g. uncertainty of the diagnosis and specific characteristics of the child, the parents and the healthcare providers which make decision-making more difficult), the decision-making process (e.g. multidisciplinary consultations and advance care planning (ACP) which make decision-making easier), and the overarching structure (e.g. lack of privacy and complex legislation making decision-making more challenging).
CONCLUSIONS: Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex end-of-life decision making process. Recommendations include establishing regular multidisciplinary meetings to include all healthcare providers and reduce unnecessary uncertainty, routinely implementing ACP in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents and reviewing the complex legal framework of perinatal end-of-life decision-making.
Context: There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end-of-life (DIALs), an indicator of quality care.
Objective: To examine how DIALs have been operationally defined, and identify areas where evidence is biased or inadequate to inform practice.
Methods: We conducted a scoping review of the English language literature published from 1/1/04-6/30/17. Articles were eligible if they reported data on =2 DIALs within 100 days of the deaths of adults =18 years old. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases were explored.
Results: We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly on cancer (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., ICU admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs.
Conclusions: Unwarranted variation in DIALs assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIALs assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care.
Context: Patients with decompensated cirrhosis have high rates of healthcare utilization at end-of-life (EOL). However, the impact of transplant candidacy on intensity of EOL care is currently unknown.
Objectives: to assess the relationship between transplant candidacy and intensity of EOL care in the last year of life in an ambulatory cohort of patients with decompensated cirrhosis.
Methods: We performed a retrospective analysis of 230 patients with decompensated cirrhosis who were evaluated for liver transplantation in a large healthcare system between 1/1/2010 and 12/31/2017 and died by 6/20/2018. We compared healthcare utilization in the last year of life and EOL care outcomes between transplant-listed (n=133) and non-listed (n=97) patients. We examined predictors of palliative and hospice care utilization using multivariate logistic regression.
Results: During the last year of life, patients had a median of 3 [IQR 2-5] hospitalizations and spent a median of 31 days [IQR 16-49] in the hospital. In all, 80% of patients died in the hospital, with 70% dying in the intensive care unit. The majority (70.0%) received a life-sustaining procedure (mechanical ventilation, renal replacement therapy, or cardiopulmonary resuscitation) during their terminal hospitalization, which did not differ between transplant-listed and non-listed patients (74.4% vs. 63.9%, p=0.09). Transplant-listed patients had lower odds of receiving specialty palliative care (OR 0.43, p=0.005). Patients with hepatocellular carcinoma had higher odds of receiving hospice care (OR 2.03, p=0.049).
Conclusion: Patients with decompensated cirrhosis had intensive healthcare utilization during their last year of life regardless of transplant candidacy. Further work is needed to optimize their EOL care, particularly for patients who are ineligible for transplantation.
OBJECTIVE: The goal of this review is to analyse articles on the experience of surrogates who find themselves making end-of-life decisions for a relative with a major neurocognitive disorder in a nursing home.
DESIGN: An integrative review of the literature based on Whittemore and Knafl's method.
DATA SOURCES: This review used the CINAHL, PubMed, PsycInfo, Embase and Web of Science databases. A complementary search was also conducted via citation pearl searching, and the reference lists from the selected articles were manually verified.
REVIEW METHOD: The quality of the selected articles was assessed using the Crow Critical Appraisal Tool, and the data were extracted systematically and were then organised according to Mishel's uncertainty in illness theory. The data that did not correspond to any concept of the theory were excluded at this stage. Analysis was conducted using the method put forward by Miles, Huberman and Saldaña.
RESULTS: A total of 18 articles were selected: 11 qualitative, 5 quantitative and 1 using a mixed method, as well as 1 ethical argument. The subjects arising from the analysis of the articles were the types of decisions made, the support available for the surrogates, the role and involvement of the surrogates in the process and the factors that influence the decisions.
CONCLUSION: The results of this integrative review stimulate reflection on the needs of family members involved in making decisions, as well as on the nursing practice and research. Published literature is mainly from North America, and thus, more research is needed to better understand the impact of cultural and ethnic differences in the process, which was poorly covered by the existing literature. Also, exploring nurses' involvement in supporting surrogates may eventually better equip nurses for their interventions with surrogates.
IMPLICATIONS FOR PRACTICE: Describing the illness progression and the signification of palliative care to the resident with a NCD and their surrogate decision makers, as well as discussing end-of-life care preferences as early as possible are all nursing interventions that could potentially enhance surrogates' end-of-life decision-making process.
The objective of this study was to identify the variables that influence physicians to implement Advance Directives and assess their impact on end-of-life care. It is a narrative literature review of 25 articles published between 1997 and 2018, in the following databases: CAPES, EBSCOhost, BDTD, VHL, Google Scholar, MEDLINE®/PubMed. The keywords utilized were: "advance directives", "living wills", "physicians", "attitude", "decision making", "advance care planning". The main factors that influenced physicians to implemente the directives were patients prognosis, medical paternalism, and patients understanding of their medical condition. Respect for autonomy, lack of knowledge and experience with directives, legal concerns, family influence, cultural and religious factors also contributed to medical decision. Most studies (86%) showed that having a directive led to lower rates of invasive interventions in the last days of patient´s life. Physicians were interested in respecting their patients' autonomy and agreed that having an advance directive helped in the decision-making process; however, they stated other factors were also taken into account, mainly prognosis and reversibility conditions. Having directives contributed to reducing the use of life support therapies and adoption of comfort measures.
BACKGROUND: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.
AIM: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.
DESIGN: Nationwide population-based postbereavement survey.
PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.
RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.
CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.
Some end-of-life aspects have become a significant political and social issue such as elderly care and euthanasia. But hardly anything is known about how the general public in Germany thinks about death and dying more generally. Therefore, we conducted a representative online survey (N = 997) regarding 21 end-of-life aspects. Differences between subgroups were analyzed by conducting analyses of variance and Tukey honestly significance difference post hoc tests and by performing t tests. The findings revealed that the general public is open to engaging with topics of death, dying, and grief and that death education might even be promoted for children. Most participants appraised dealing with the finitude of life as part of a good life, but few have contemplated death and dying themselves so far. Attitudes and perceptions were related to age, subjective health, religious denomination, and gender. The survey provides useful implications for community palliative care, death education, and communication with dying people.
BACKGROUND: Authors of expert guidelines and consensus statements recommend that decisions at the end-of-life (EOL) be discussed before and after implantation of an implantable cardioverter defibrillator (ICD) and include promotion of shared decision-making. The purpose of this study was to describe experiences, attitudes, and knowledge about the ICD at EOL in ICD recipients and to compare experiences, attitudes, and knowledge in ICD recipients with and without heart failure (HF). We further sought to determine factors associated with having discussions about EOL.
METHODS AND RESULTS: Using a national registry in Sweden of all ICD recipients (n=5355) in 2012, an EOL questionnaire, along with other ICD-related measures, was completed by 2403 ICD recipients. Of the participants, 1275 (n=53%) had HF. Their responses in the knowledge, experience, and attitude domains were almost identical to those without HF. Forty percent of patients with and without HF did not want to discuss their illness trajectory or deactivation of their ICD ever. In logistic regression analyses, we found that having had an ICD shock (OR, 2.05; CI, 1.64-2.56), having high levels of anxiety (OR, 1.41; CI, 1.04-1.92), and having high levels of ICD concerns (OR, 1.53; CI, 1.22-1.92) were the only significant predictors of having discussions with providers about EOL scenarios (P<0.001 for full model).
CONCLUSIONS: HF was not a predictor of having an EOL conversation. Further research is needed to determine if attitudes related to not wanting to discuss EOL interfere with good quality of life and of death, or if shared decision-making should be encouraged in these individuals.
Nurses play an essential role in providing compassionate evidence-based care at the end of life, yet many undergraduate students have limited opportunities to participate in end-of-life care experiences. Arts-based pedagogy has been explored as a strategy in nursing education that focuses on the affective domain of learning. The purpose of this qualitative narrative analysis was to explore the impact of an arts-based reflection assignment on student affective learning using artistic images depicting end-of-life scenarios. Student written narratives (n = 21) were analyzed using content analysis, and four themes emerged that described the components of affective learning in several areas.