La rédaction des directives anticipées est perçue difficilement car elle donne l'impression de "graver dans le marbre" une situation inconnue au moment de l'écriture. Comme cela a été souvent souligné, ce que l'on craint pour cette période va de l'abandon à l'obstination déraisonnable, avec toute une échelle de sentiments entre ces deux bornes.
L'association américaine CODA-ALLIANCE (San José) a proposé sous forme d'un jeu de cartes, une liste de souhaits.
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Le maintien à domicile des personnes gravement malades et en fin de vie ainsi que des personnes âgées fragilisées va augmenter considérablement ces prochaines années. Cette évolution est liée à des causes démographiques, à l’organisation des soins, aux politiques de santé ainsi qu’à des désirs individuels. Mais finir sa vie à domicile reste un choix qui engage une solidarité intergénérationnelle, familiale et sociétale, qui relève à la fois d’un bénévolat naturel, celui des proches, et d’un bénévolat organisé, celui des associations. Cet accompagnement représente un défi pour JALMALV car le cadre et les conditions d’accompagnement ne sont pas les mêmes qu’en institution. Ce bénévolat nécessite donc une réflexion et une formation pour pouvoir identifier les spécificités d’un accompagnement à domicile.
Le domicile est le lieu de vie habituel de la personne malade. C’est là qu’elle a vécu, souvent depuis de longues années, parfois presque toute sa vie. Ce lieu évoque une partie de son histoire, il est rempli de souvenirs personnels. C’est aussi un lieu qui lui assure sécurité et intimité. D’une certaine façon, c’est pour lui un cocon protecteur. Quand il accueille chez lui un bénévole d’accompagnement, celui-ci est en quelque sorte son « invité ». Il sera plus à l’aise pour parler de lui-même, de son vécu, de ses expériences, de ses émotions. Il sera plus enclin à faire des confidences.
Certes, les institutions, et en particulier les EHPAD, insistent sur le caractère privé de la chambre du résident et sur la nécessité de lui garantir une certaine intimité…
Libre et éclairé : voilà comment devrait être un consentement viable, valable et authentique, tant dans le monde de la santé que dans celui des affaires. Mieux même, et plus conforme à l’actualité, est qu’il soit « libre et informé » : cela met en avant la personne concernée plutôt que le message et sa source lumineuse forcément en surplomb. Telles sont en tout cas les conditions qui lui donnent son label aux plans de la loi et de la déontologie, si ce n’est à celui de l’éthique. Pour autant, liberté et information se situent-elles exactement au même niveau fondateur ? Jouent-elles des rôles symétriques dans le processus qui conduit au oui ?
The present doctoral thesis focuses on evaluating the use, trends in use, factors that influence use, and the impact of using policy measures to support patients and informal caregivers to provide palliative care in the home or community setting in Belgium. Using full-population administrative databases containing information on all decedents in Belgium between 2010 and 2015, we provided insights into these patterns that allow formulating points of improvement, identification of focal groups for policy, but also allow evaluating the societal impact of the measures in tems of quality and costs of care.
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The involvement of families, friends and others important to the patient has always been central in person-centred, individualised care. Following fragility fracture, many patients wish for their family and significant others to be involved in their care, both during the hospital stay and following discharge, and it is often expected that families will provide, or lead, continuing care once they are discharged.
This study developed an end-of-life (EOL) care nursing knowledge scale for Japanese geriatric nurses (ELNKS-JG) to measure nurse knowledge of EOL care for older adults. It also was used to evaluate the quality of The End-of-Life Nursing Education Consortium–Japan Geriatric. Participants were 1168 nurses employed in 32 institutions across Japan. The items of our measure were developed to cover 8 important topics: principles of EOL care for older adults; pain management; symptom management; ethics of care; cultural and spiritual considerations; communication; loss, grief, and bereavement; and caring for final days. The measure included 51 items with an overall Cronbach a coefficient of 0.87 and an intraclass correlation coefficient of 0.81. Our measure, the ELNKS-JG, was confirmed to have good internal consistency, test-retest reliability, content validity, and known-groups validity. This scale’s items included knowledge about noncancerous diseases, physical changes due to aging, family care, and multidisciplinary collaboration. The ELNKS-JG comprehensively measures a nurse’s knowledge of EOL care for older adults in any EOL setting. Furthermore, this scale can evaluate educational programs aimed at improving care quality and encouraging related activities in facilities that provide EOL care.
BACKGROUND: At the end of life, about 85-90% of patients can be treated within primary palliative care (PC) provided by general practitioners (GPs). In Germany, there is no structured approach for the provision of PC by GPs including a systematic as well as timely identification of patients who might benefit from PC, yet. The project "Optimal care at the end of life" (OPAL) focusses on an improvement of primary PC for patients with both oncological and non-oncological chronic progressive diseases in their last phase of life provided by GPs and health care services.
METHODS: OPAL will take place in Hameln-Pyrmont, a rural region in Lower Saxony, Germany. Target groups are (a) GPs, (b) relatives of deceased patients and (c) health care providers. The study follows a three-phase approach in a mixed-methods and pre-post design. In phase I (baseline, t0) we explore the usual practice of providing PC for patients with chronic progressive diseases by GPs and the collaboration with other health care providers. In phase II (intervention) the Supportive and Palliative Care Indicators Tool (SPICT) for the timely identification of patients who might benefit from PC will be implemented and tested in general practices. Furthermore, a public campaign will be started to inform stakeholders, to connect health care providers and to train change agents. In phase III (follow-up, t1) we investigate the potential effect of the intervention to evaluate differences in the provision of PC by GPs and to convey factors for the implementation of SPICT in general practices.
DISCUSSION: The project OPAL is the first study to implement the SPICT-DE regionwide in general practices in Germany. The project OPAL may contribute to an overall optimisation of primary PC for patients in Germany by reducing GPs' uncertainty in initiating PC, by consolidating their skills and competencies in identifying patients who might benefit from PC, and by improving the cooperation between GPs and different health care stakeholders.
OBJECTIVES: The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND).
MATERIAL & METHODS: Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death.
RESULTS: The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end-of-life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end-of-life discussions.
CONCLUSIONS: The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person-centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end-of-life conversations.
Communicating a terminal prognosis is challenging for patients, families and healthcare professionals. However, positive effects have been reported when children are told about their diagnosis and prognosis, including fewer symptoms of anxiety and depression and enhanced adherence to treatment. When research about prognostic communication was first published in the 1950s and 1960s, it recommended protecting children from bad news. By the late 1960s, a more open approach was recommended and by the late 1980s the advice was to always tell children. There has been a growing awareness of the complexity of prognostic disclosure and the need to balance often competing factors, such as hope and patient and family considerations, on a case-to-case basis.
Despite advances in treatment options, many patients diagnosed with cancer ultimately face the premature ending of their life. Under these circumstances, patients are confronted with the challenge of re-articulating their personal experiences and identities in ways that accommodate a changed reality and help them create meaning at the end of life. Their storytelling constitutes a particular type of illness story, distinct from other related categories. For example, although restitution narratives are driven by recovery, end-of-life stories come forth in relation to unattainable health and the contemplation of death. Health-care professionals may support the storytelling process. Techniques include diary keeping, reading stories written by other patients, and the co-creation of stories between patients and spiritual guides. Beyond having a therapeutic function, these personal stories are valuable pedagogical materials that help health-care professionals understand the end-of-life experience and they create more efficient care for patients.
La phase terminale de la vie est parfois source de fortes émotions. Elle demande une présence et une communication adaptée de la part de tous les soignants auprès de la personne en fin de vie. L’aide-soignant, qui est au plus près de la personne, est quelquefois témoin de confidences et de propos existentiels. Il s’agit d’ajuster sa présence. Illustration.
Cardiovascular (CV) diseases are the most common causes of death and causes frequent hospital admissions. The increase in life expectancy and the appearance of new treatments is changing in the clinical profile of CV disease, with a rise in chronic processes and concomitant comorbidities. These changes are probably reflected in the current profile of patients admitted to cardiology departments, and in their causes of mortality.
BACKGROUND: Early end-of-life (EOL) discussions improve patient satisfaction, quality of care, and the cost-effectiveness of care. However, some US studies show that radiation oncologists (ROs) are unlikely to discuss EOL issues until the patients develop significant symptoms or the families initiate the discussion. There have been no prior studies describing the patterns of EOL discussions among Canadian ROs. The objectives of this study were: (I) to describe the patterns of EOL discussions among Canadian ROs; (II) to identify the barriers to EOL conversation among Canadian ROs; (III) to assess the attitudes of Canadian ROs toward Medical Assistance in Dying (MAiD).
METHODS: The 22-question online survey was distributed to the members of Canadian Association of Radiation Oncologists (CARO). Demographics, EOL discussion patterns, perception of EOL discussions, barriers, and the impact of MAiD were evaluated.
RESULTS: Sixty ROs responded out of 326. Prognosis (57%) and goals of care (58%) were routinely discussed, while advanced directive (40%) and planned site of death (12%) were not. More than 90% felt that early EOL discussions with palliative patients were important. The amount of palliative discussion training was correlated with confidence in EOL discussion (P <0.01), perceived importance of RO role in EOL (P=0.006), and the frequency of planned site of death discussion (P=0.041). The most frequently identified barriers were lack of time, uncertainty about prognosis, and concern for patient disappointment. Many ROs provided MAiD information upon request or case-by-case, but only 3% provided the information routinely.
CONCLUSIONS: Canadian ROs recognize the importance of EOL discussions, but they do not routinely incorporate advanced directive or site of death in their discussions. ROs with more palliative discussion training were more confident in EOL discussion and likely to engage in them earlier. Short structured training may improve the confidence and quality of EOL discussion. Time constraint is the number one barrier that may be alleviated by delegation of tasks and patient education tools. Discussion about MAiD is supported but not routine among Canadian ROs.
OBJECTIVES: This study aimed to evaluate the incidence and causes of hospitalization in the year preceding death of patients with heart failure (HF).
BACKGROUND: Hospitalizations in HF are common, especially in the last period of the lives of patients with HF, but little is known about hospitalization burden and causes during this phase of the disease.
METHODS: From Danish nationwide registries, we identified patients who died in the period 2001-2016 after having experienced HF for at least 1 year, and examined hospitalizations during the last year of life in age- and sex-stratified analyses.
RESULTS: We included 32,157 patients. Median age at time of death was 81 years; 39% were women. A total of 26,561 (84%) patients were hospitalized at least once during the last year of life. The patients experienced a median of 2 (1 to 3) hospitalizations and spent 14 (3 to 31) days in the hospital. Of all hospitalizations (n = 80,362), 9,644 (12%) were due to HF, 14,738 (18%) due to other cardiovascular (CV) causes, and 51,696 (64%) due to non-CV causes (p < 0.001). The frequency of hospitalizations increased toward death, but the domination of non-CV causes remained consistent throughout the year, regardless of age and sex. If we included diagnoses covering renal insufficiency in the definition of HF hospitalizations, non-CV hospitalizations remained dominant (58%).
CONCLUSIONS: During the last year alive, patients with HF were more often hospitalized due to non-CV causes rather than HF. These findings warrant more focus on a multidisciplinary approach toward end-of-life care in patients with HF.
The present article reviews the state of public debate and legal provisions concerning end-of-life decision-making in Italy and offers an evaluation of the moral and legal issues involved. The article further examines the content of a recent law concerning informed consent and advance treatment directives, the main court pronouncements that formed the basis for the law, and developments in the public debate and important jurisprudential acts subsequent to its approval. The moral and legal grounds for a positive evaluation of this law, which attests that the patient may withhold or withdraw from life-prolonging treatment, will be offered with reference to liberal approaches and particularly to the frameworks of care and virtue ethics; but reasons will also be offered in order to consider not only the latter but also broader range of end-of-life treatment decisions as morally apt options. In this light, we argue in favour of a further development of the Italian legislation to encompass forms of assisted suicide and active euthanasia.
PURPOSE: The purpose of this study was to explore the perceptions of critical care nurses regarding the withdrawal or withholding of enteral nutrition (EN) and parenteral nutrition (PN) at the end-of-life, which is not allowed according to the current law in South Korea.
METHODS: This was a cross-sectional study utilizing a self-report survey. The participants in the study were 141 nurses working in the intensive care units of a tertiary university hospital. The critical care nurses' general attitudes about EN and PN at the end-of-life were measured using the questionnaires developed by Lubart, Leibovitz, and Habot. The nurses responded to additional questions on whether withdrawal or withholding of EN or PN at the end-of-life should be legally allowed.
RESULTS: The mean scores of the general attitude items on EN ranged between 3.03 and 3.35 on a 5-point Likert scale where a value of 1 represents "strongly disagree" and a value of 5 represents "strongly agree," while those for PN ranged between 2.89 and 3.65. Respecting attitudes toward EN and PN, critical care nurses had more negative attitudes about stopping PN than EN. Regarding attitudes about whether patients should be legally able to refuse EN, 34.3% agreed, while 25.7% disagreed. For PN, 40.0% agreed, while 24.3% disagreed.
CONCLUSION: Discussions about making the withdrawal and withholding of artificial nutrition legal should be initiated. Moreover, education regarding evidence about the outcomes of EN and PN during end-of-life care and up-to-date clinical guidelines about it should be provided.
In many countries, it has been publicly debated whether health gains for patients at end-of-life (EoL) should be valued higher than health gains for other patients. This has led to a range of stated preference studies examining the justification for an EoL premium on the basis of public preferences - so far with mixed findings. In the present study, we seek to extend this literature. We apply a simple stated preference approach with illustrative binary choices to elicit both individual and social preferences for several types of health gains. More specifically, we investigate whether health gains at EoL, resulting from either an improvement in quality of life (QoL) or life expectancy (LE) are valued differently from similarly sized health gains from preventive treatment and treatment of a temporary disease. Furthermore, we examine whether social preferences are affected by the age of beneficiaries. A web-based survey was conducted in 2015 using a random sample of 1047 members of the general public in Denmark. Overall, we do not find evidence to support an EoL premium compared to other health gains, neither when preferences are elicited from a social nor an individual perspective. Furthermore, our results demonstrate that the type of the health gain received matters to preferences for treatment at EoL with more weight given to gains in QoL than gains in LE. Finally, we find heterogeneity in preferences according to respondent characteristics, perspectives and age of beneficiaries.
BACKGROUND: Immune checkpoint inhibitors have changed the landscape of cancer care by increasing progression-free and overall survival in some patients with cancer. We evaluated use and variables contributing to immune checkpoint inhibitor treatment near the end of life.
METHODS: We studied 157 patients who received immune checkpoint inhibitors and died between January 2015 and December 2018. All patients had a palliative care consult any time between starting an immune checkpoint inhibitor and death. Univariate and multivariate models were used to examine variables related to immune checkpoint inhibitor use near the end of life.
RESULTS: Among 157 patients studied, 42 (27%) received a dose of immune checkpoint inhibitor in the last 30 days of life. Those who received treatment in the last 30 days of life had lower hospice enrollment (19 [45%] vs 78 [69%], P = .007) and higher rates of dying in the hospital (23 [56%] vs 33 [29%], P = .002). The percentage of patients with Eastern Cooperative Oncology Group (ECOG) =3 at the time of last immune checkpoint inhibitor dose was higher in the group that received immune checkpoint inhibitor treatment in the last 30 days of life (11 [26%] vs 9 [8%], P = .003). Lack of traditional chemotherapy after immune checkpoint inhibitor, ECOG =3, and lack of hospice enrollment were independently associated with receiving immune checkpoint inhibitor in the last 30 days of life.
CONCLUSION: Immune checkpoint inhibitor use in the last 30 days of life is common and associated with poor performance status, lower hospice enrollment, and dying in the hospital.
Objectives: Decision-making processes concerning end-of-life decisions are not well understood for patients admitted into stroke units with severe stroke. To assess the influence of nurses on the medical perspectives and approaches that lead to withholding and/or withdrawing treatments related to end-of-life (EOL) decisions.
Patients and methods: This secondary analysis nested within the TELOS French national survey was based on a physicians' self-report questionnaire and on a I-Score which was linked to nurses' involvement. Physician's responses were evaluated to assess the potential influence of nurse's involvement on physician's choices during an end-of-life decision.
Results: Among the 120 questionnaires analyzed, end-of-life decisions were more often made during a round-table discussion (58% vs. 35%, p = 0.004) when physicians declare to involve nurses in the decision process. Neurologists involved with nurses in decision making were more likely to withhold a treatment (98% vs. 88%, p = 0.04), to withdraw artificial feeding and hydration (59% vs. 39%, p = 0.04), and more frequently prescribed analgesics and hypnotics at a potentially lethal dose (70% vs. 48%, p = 0.03).
Conclusion: The involvement of nurses during end-of-life decisions for patients with acute stroke in stroke units seemed to influence neurologists' intensivist practices and behaviors. Nurses supported the physicians' decisions related to forgoing life sustaining treatment for patients with acute stroke and may positively impact on the family's choice to participate in end-of-life decisions.
Background: There is variation in the clinical management of intestinal obstruction (IO) in patients with cancer. We describe the management of cancer-associated IO near the end of life in a population-based cohort with universal health coverage.
Methods: Patients who died of gastric, colorectal, ovarian, and pancreatic cancers from 2002 to 2015 were identified from the Ontario Cancer Registry. Those with =1 hospital admission for IO in the final year of life were identified from administrative data. Management of IO at index admission was categorized as surgery, gastrostomy, stent, feeding jejunostomy, and medical management. Trends in management over the study period were assessed by the Cochran-Armitage test.
Results: The cohort included 57 378 patients (gastric [n = 7448, 13%], colorectal [n = 30 577 53%], ovarian [n = 6273, 11%], and pancreatic [n = 13 080, 23%] cancers). Of those, 7618 (13%) patients had =1 admission for IO in the final year of life. Of these patients, 2657 (35%) patients were managed with a surgical/procedural intervention at index admission (surgery [86%], gastrostomy [8%], stent [6%], and jejunostomy [0.4%]); the remaining patients (n = 4961, 65%) received medical management. Over the study period, there was a small but statistically significant increase in the use of stents (0% in 2002 to 5% in 2015, P < .0001) and gastrostomy tubes (2% in 2002 to 4% in 2015, P = .002) and a large decrease in the use of surgery (41% in 2002 to 28% in 2015, P = .04).
Conclusions: Management of IO has changed over time with the increased use of stents and gastrostomy tubes and decreased use of surgery.