Atteint d’un cancer qui ne guérira pas, Ethan doit s’organiser. Il ne lui reste que peu de temps. Que doit-il mettre en ordre rapidement ? Et surtout, qu’a-t-il envie de faire ? Comment va-t-il occuper le peu de temps qu’il lui reste ? Après avoir établi une liste de dix rêves, Matthieu, son meilleur ami, va tout faire pour l’aider à les réaliser. À travers deux continents et quatre pays différents et au fil des différentes rencontres qui croiseront son chemin, Ethan va apprendre à accepter la maladie. Prêt à tout pour que sa fin de vie ne soit pas vaine, il dépassera ses propres limites... Avant que le cancer ne gagne.
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En 2016, Guylaine Champagne apprend qu'elle est atteinte d'un cancer du poumon de stade IV. Malgré une rémission, la maladie revient et le diagnostic de fin de vie est annoncé. Avec ce témoignage livré dans ses journaux intimes, l'auteure se dévoile dans toute sa vulnérabilité et son authenticité. Elle invite à la réflexion sur le sens profond de la vie au-delà de la maladie.
Le jour où Lucien Fléchet meurt, quatre de ses amis à la retraite ont l'idée folle de choisir leur mort. Des plages de Miami aux falaises de l'Algrave en passant par la Suisse et le Cameroun, ils font face à des situations imprévisibles et à des rencontres loufoques.
Médecin de famille formée aux soins palliatifs, l'auteure expose trois conditions dont le respect peut garantir de connaître une mort sereine tout en assurant une préparation à cette ultime étape de l'existence à travers une vie épanouie. Ces conditions, liées à la joie profonde, à l'ouverture aux autres et à la paix intérieure, sont accompagnées de nombreux exercices afin d'apprendre à les vivre.
Ce roman se présente comme une lettre d'adieu pour un chat aimé et disparu à travers laquelle l'auteur évoque les mystères de la vie, l'amour et la douleur de la perte. C'est une réflexion sur la fin inéluctable et la mort qui donne sens à la vie, doublée d'une invitation à jouir du présent.
Background: Palliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.
Aim: To identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.
Design: Within the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.
Setting/participants: Loved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.
Results: 993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.
Conclusions: It is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.
Trial registration number This study was registered at the German Clinical Trials Register (DRKS00013916).
Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code.
Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments.
Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method.
Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences.
Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.
BACKGROUND: In the Arab and Islamic world, data on palliative and end-of-life (PEOL) care education are minimal.
OBJECTIVES: The current study's primary aim was to identify what PEOL care education is delivered to undergraduate nurses in Egypt and the teaching strategies used to deliver this education. A secondary aim was to assess the feasibility of using online surveys in nursing research in Egypt.
DESIGN: This is a cross-sectional survey.
SETTINGS: Ten randomly selected faculties of nursing across Egypt.
PARTICIPANTS: Nursing educators who were working at three academic departments; Medical-Surgical Nursing, Critical Care Nursing, and Gerontological Nursing; in the participating faculties.
METHODS: After face-to-face recruitment of participants, data were collected using an online questionnaire with an adjunctive use of paper questionnaires. The questionnaire assessed participants' and courses' characteristics, the inclusion of the PEOL Care Index content in the surveyed courses, and teaching strategies used to deliver this content.
RESULTS: A total of 95 nursing educators were involved in the current study (response rate = 86.4%). All participants were female, and 87.4% responded via online questionnaires. The overall coverage of the PEOL care content ranged from 76% to 100%. End-of-life care and spiritual care were the least frequently reported PEOL care topics; on average, by 19.6% and 36% of the educators, respectively. Lecture was the most frequently used teaching strategy, followed by clinical field practice (mean percentages of utilization: 77.7% and 53.6%, respectively).
CONCLUSIONS: In Egypt, most PEOL care topics are covered in undergraduate nursing curricula. Yet, educating these topics is predominantly theoretical. End-of-life care and spiritual care are the least frequently covered PEOL care topics. Online surveys are feasible for multisite curricular assessment, and this feasibility may be augmented by face-to-face recruitment of participants and adjunctive use of paper questionnaires.
Purpose: To evaluate factors associated with continuation of systemic anti-cancer therapy (SACT) after palliative care consultation, and SACT administration in the last 30 days of life, in outpatients with cancer referred to palliative care. Timing of referral was of particular interest.
Methods: Patient, disease, and treatment-related factors associated with SACT before and after palliative care, and in the last 30 days of life, were identified using 3-level multinomial logistic regression. Referral to palliative care was categorized by time from death as early (>12 months), intermediate (6-12 months), and late (=6 months).
Results: Of the 337 patients, 240 (71.2%) received SACT for advanced cancer; of these, 126 (52.5%) received SACT only prior to palliative care while 114 (47.5%) also received SACT afterward. Only 35/337 (10.4%) received SACT in the last 30 days of life. On multivariable analysis, factors associated with continuing SACT after palliative care consultation were a cancer diagnosis for <1 year (OR 3.09, p = 0.01), breast primary (OR 11.88, p = 0.0008), and early (OR 28.8, p < 0.001) or intermediate (OR 6.67, p < 0.001) referral timing. No factors were significantly associated with receiving SACT in the last 30 days versus earlier, but the median time from palliative care referral to death in those receiving SACT in the last 30 days versus stopping SACT earlier was 1.78 versus 4.27 months.
Conclusion: Patients who received SACT following palliative care consultation were more likely to be referred early; however, patients receiving SACT in their last 30 days tended to be referred late.
INTRODUCTION: Current research on prostate cancer is heavily focused on early detection and new treatments. There is a lack of research on the overall morbidity prostate cancer survivors face and the amount of healthcare treatment they receive toward the end of their lives. Identifying these care needs will allow appropriate healthcare modeling, resource allocation and service re-design to ensure higher quality care toward the end of life. The aim of this study is to quantify and analyze the use of healthcare services by patients dying with but not necessarily of prostate cancer.
METHODS: All patients who died with a diagnosis of prostate cancer during a 2-year period at a single hospital were included. Data on outpatient attendances, elective and emergency admissions and palliative care involvement in the 12 months prior to death were collected.
RESULTS: A total of 77 patients were included and of these, 60 (78.0%) had 545 scheduled appointments with 473 (86.8%) attendances. More non-attendances occurred in the last 6 months of life; 56 vs 16, p < 0.001. Nurse led clinics doubled in the last 6 months of life, 117 vs 66. There were 173 admissions from 63 (81.8%) patients resulting in 1816 days inpatient stay. This averaged to 2.7 admissions per patient for 10.5 days per episode. 32 (41.6%) patients were seen by palliative care resulting in 192 visits in total. 78 (40.6%) were inpatient and 114 (59.4%) were community reviews.
CONCLUSIONS: In the last year of life, prostate cancer patients use a considerable amount of healthcare resources. Understanding this clinical and economical burden is important for healthcare remodeling to provide better quality care that is cost effective.
Background: With increasing cost of healthcare in our aging society, a consistent pain point is that of end-of-life care. It is particularly difficult to prognosticate in non-cancer patients, leading to more healthcare utilisation without improving quality of life. Additionally, older adults do not age homogenously. Hence, we seek to characterise healthcare utilisation in young-old and old-old at the end-of-life.
Methods: We conducted a single-site retrospective review of decedents under department of Advanced Internal Medicine (AIM) over a year. Young-old is defined as 65–79 years; old-old as 80 years and above. Data collected was demographic characteristics; clinical data including Charlson Comorbidity Index (CCI), FRAIL-NH and advance care planning (ACP); healthcare utilisation including days spent in hospital, hospital admissions, length of stay of terminal admission and clinic visits; and quality of end-of-life care including investigations and symptomatic control. Documentation was individually reviewed for quality of communication.
Results: One hundred eighty-nine older adult decedents. Old-old decedents were mostly females (63% vs. 42%, p = 0.004), higher CCI scores (7.7 vs 6.6, p = 0.007), similarly frail with lower polypharmacy (62.9% vs 71.9%, p = 0.01). ACP uptake was low in both, old-old 15.9% vs. young-old 17.5%. Poor prognosis was conveyed to family, though conversation did not result in moderating extent of care.
Old-old had less healthcare utilisation. Adjusting for sex, multimorbidity and frailty, old-old decedents had 7.3 ± 3.5 less hospital days in their final year. Further adjusting for cognition and residence, old-old had 0.5 ± 0.3 less hospital admissions. When accounted for home care services, old-old spent 2.7 ± 0.8 less hospital days in their last admission.
Conclusion: There was high healthcare utilisation in older adults, but especially young-old. Enhanced education and goal-setting are needed in the acute care setting. ACP needs to be reinforced in acute care with further research to evaluate if it reduces unnecessary utilisation at end-of-life.
Supporting physicians in Intensive Care Units (ICU)s as they face dying patients at unprecedented levels due to the COVID-19 pandemic is critical. Amidst a dearth of such data and guided by evidence that nurses in ICUs experience personal, professional and existential issues in similar conditions, a systematic scoping review (SSR) is proposed to evaluate prevailing accounts of physicians facing dying patients in ICUs through the lens of Personhood. Such data would enhance understanding and guide the provision of better support for ICU physicians.
Objectives: To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life.
Design: Cross-sectional postbereavement survey.
Setting: Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany.
Participants: 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded.
Results: For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71).
Conclusions: Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements.
Trial registration number DRKS00011925.
Long-term care (LTC) nurses are a critical nexus for patient communication and vital to advance care planning due to their professional role and breadth of patient relationships. The current study's aim was to explore the communication strategies Midwestern LTC nurses use to clarify patients' end-of-life (EOL) care preferences. Two focus groups used a phenomenological framework to elucidate the experiences of 14 RNs. Data analysis revealed two themes grounded in time: (a) nurses use time to assess patients' EOL situation and assist patients to discern care options; and (b) nurses educate patients about EOL care, adjust care plans, and develop trusting relationships. Two themes were grounded in clinical experience: (a) nurses become persistent advocates and educators to initiate and sustain EOL communication; and (b) nurses learn consistency in communication, including awareness of patients' nonverbal communication. Nurses shared that EOL communication is never "done"; time frames to assess, educate, and clarify are continuous.
The Advancing American Kidney Health (AAKH) Initiative aims to promote high-value patient-centered care by improving access to and quality of treatment options for kidney failure. The 3 explicit goals of the initiative are to reduce the incidence of kidney failure, increase the number of available kidneys for transplantation, and increase transplantation and home dialysis. To ensure a patient-centered movement toward home dialysis modalities, actionable principles of palliative care, including systematic communication and customized treatment plans, should be incorporated into this policy. In this perspective, we describe 2 opportunities to strengthen the patience-centeredness of the AAKH Initiative through palliative care: (1) serious illness conversations should be required for all dialysis initiations in the End-Stage Renal Disease Treatment Choices model, and (2) conservative kidney management should be counted as a home modality alongside peritoneal dialysis and home hemodialysis. A serious illness conversation can help clinicians discern whether a patient's goals and values are best respected by a home dialysis modality or whether a nondialytic strategy such as conservative kidney management should be considered. An intensive and careful patient- and family-centered selection process will be necessary to ensure that no patient is pressured to forego conventional dialysis.
Background: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients’ medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents’ LYOL.
Methods: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent’s LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach’s alpha.
Results: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed =5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item” Given a copy of their treatment plan” highest (mean 3.96), whereas “encouragement to get to a specific group or class to cope with the condition” (mean 1.74) was rated lowest. Cronbach’s alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett’s test for sphericity p < 0.001), with items’ factor loadings ranging from 0.46 to 0.82.
Conclusions: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies.
Background: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians’ profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data.
Methods: A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire (response rate 66%). Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians’ attitude and views ranging from value of life to quality of life approach (scale 1–5).
Results: Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score (indicative of value of quality-of-life) were more likely to limit, while those with a low score (indicative of value of sanctity-of-life) were more likely for continuation of intensive care. Physicians’ educational level (p:0.097), involvement in research (p:0.093), religion (p:0.024) and position on the existing legal framework (p < 0.001) were factors that affected the attitude score.
Conclusions: Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform.
In end-of-life care, deprescribing practices may vary considerably from one practitioner to the next, although most published frameworks for evaluating medication appropriateness in advanced illness consider three key principles (1) patient and caregiver goals, (2) remaining life expectancy (LE), and (3) medication time to benefit (TTB). The objective of this article is to provide clinicians with a structured, consistent approach for deprescribing that does not replace clinical judgment or the preferences of patients and their families but enhances it through clinical data. The emphasis will be on the time component of published models, including how to estimate remaining LE and medication TTB. Through case examples of two new hospice admissions, LE and TTB will be estimated and applied to deprescribing decisions. This time-centric approach may satisfy the palliative and hospice clinicians' desire for clear clinical justification for medication discontinuation while at the same time providing a strategy for communicating deprescribing rationale to patients and families.