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.
Ce livre regroupe les témoignages de malades en phase terminale, rapportés par un volontaire dans une unité de soins palliatifs dans un hôpital bruxellois.
BACKGROUND: The need for improving knowledge and practice of palliative care delivered by health workers become an agenda in several countries. In order to measure the practice, an instrument is needed. The study analyzed the validity and reliability of the instrument to assess the physician's practice in the management of patients with terminal diseases.
METHODS: This was a cross-sectional study involving 89 physicians practicing in primary health care. The instrument of practice has been developed and resulted 5 domains consist of 20 items. An overview of reliability, construct validity, uni-dimensionality, and hierarchy of the person-items of the instrument were analyzed using Rasch Model.
RESULTS: The reliability of the instrument is excellent with a person measure reliability of 0.85 and the item measure reliability of 0.96. Construct validity is confirmed with the MNSQ outfit values in the range of 0.54 to 1.59 and Pt Measure Corr. values in the range of 0.31 to 0.8. This instrument has a value of more than 20% unidimensionality which indicates the level of independence for items is good.
CONCLUSION: The instrument has good validity and reliability to assess physician's practice in the management of patients with terminal disease.
The aim of this research is to compare the hope experienced by advanced cancer patients in the terminal phase of neoplastic disease in relation to the stability of their basic mood. The study group consisted of 246 patients, average age 59.5. The youngest respondent was 18 and the oldest was 90. The diagnostic tools used in the work comprised the Personal Card designed by T. Witkowski (PC) and an NCN-36 test (Block's Hope test), designed by B.L. Block to measure the strength of hope in people struggling with serious life-threatening diseases. The test consists of 4 subscales distinguished by factor analysis. Each subscale consists of 8 items. The test allows an evaluation of hope in the following dimensions: situational dimension (health, thelic-temporal dimension), goals to be achieved in the future, spiritual dimension (spirituality), religious beliefs, and emotional-motivational (affective) dimension (motivations). In cheerful patients who are in the terminal phase of cancer, mood stability does not constitute a major differentiating factor for experiencing hope. In sad people, on the other hand, mood stability affects the intensity of hope-those with an unstable mood are more likely to have a stronger emotional-motivational dimension of hope than sad people with a balanced mood.
PURPOSE: Defining patients as 'terminally-ill' may be difficult. Therefore, determining when to shift the goal of care from curative to comfort care may be extremely challenging. The aim of this study was to merge when and how Registered Nurses (RNs) and Nurses' Assistants (NAs) adjust end-of-life care to pursue patient comfort at the end of their lives.
METHODS: A descriptive qualitative study based on multiple focus groups was performed in 2017 according to the COnsolidated criteria for REporting Qualitative research guidelines. In all, 25 RNs and 16 NAs across seven north-east Italian facilities that provide end-of-life care, voluntarily participated in the study. Each focus group was conducted following the same interview guide with open-ended questions, and was audiotaped. A thematic analysis was applied to interview transcripts.
RESULTS: The process of nursing care plan adjustment is based upon two main themes, around 'when' and 'how' to adjust it. Regarding when, 'Detecting the turning point', and 'Being ready to change continuously until the end' emerged as the main sub-themes. Regarding how, 'Weighing harms and benefits of nursing care interventions'; 'Advocating for patients' wishes', 'Sharing the adjustments inside the team at different levels', 'Involving family in the adjustments of nursing care'; and 'Allowing care to move away from evidence-based practice' were the sub-themes emerged.
CONCLUSIONS: Shedding light on the implicit decisional processes that inform care adjustments and the implementation of related strategies is essential to improve the quality of end-of-life care given that an early detection of the terminal phase has been reported to result in changes of care improving outcomes.
PURPOSE: To have more in-depth understanding of death acceptance among patients with terminal cancer in Thailand.
METHODS: A qualitative descriptive research approach was used to capture the perspectives of patients with terminal cancer about death acceptance. Purposive sampling was used to recruit the participants. A semi-structured interview guide was used during data collection to obtain in-depth interviews with 12 patients diagnosed with terminal cancer. An interpretive descriptive method was used for analyzing data. Analysis of the data for this study was conducted by the analytic team beginning at initial data collection.
RESULTS: The findings of this study revealed six major themes relating to death acceptance: 1) perceiving death as a natural part of life; 2) perceiving that death cannot be controlled; 3) thinking that death can come at any time; 4) letting everything go before dying: finding a calmness; 5) additional Buddhist practices: clean living and making merit; and 6) additional means for attaining a peaceful death and peaceful life before death.
CONCLUSION: Understanding death acceptance is important for nurses providing care for patients with terminal cancer in order to find strategies and support for patients to accept death and live peacefully with their family in the time they have left.
"Les soins palliatifs sont-ils en fin de vie ?". Interrogeait le chef du service au Centre hospitalier universitaire (CHU) de Québec lors d'une conférence de presse en décembre 2018 [...].
Au cours des dernières années, les soins palliatifs se sont fait particulièrement remettre en question dans quelques-unes de leurs prétentions ; notamment celle de réhabiliter la mort comme une étape naturelle de la vie, [...].
Si les questionnements se multiplient et s'imposent, les réponses elles, demeurent incertaines. [...] Ultimement, les soins palliatifs ont à être réfléchis [à nouveau !], repensés et rediscutés dans des perspectives philosophiques, éthiques, sociologiques et anthropologiques. En effet, les préoccupations relatives à la fin de la vie humaine et à sa valeur, ne peuvent être réduites à des considérations médico-hospitalières. [...]
La mort et mourir demeurent des réalités humains complexes existentiels. Elles interpellent chaque personne au plus profond d'elle-même et suscitent souvent une quête de sens révélant toute l'incertitude inhérente à ces expériences singulières.
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Background: Tumor fever and infection are common febrile etiologies among advanced cancer patients. To date, only few studies have been conducted to differentiate between tumor fever and infections.
Objective: This study aimed to identify discriminating factors that provide rapid results and are feasible and minimally invasive for discriminating between tumor fever and infection in advanced cancer patients.
Methods: This is a retrospective cohort study. Advanced cancer patients with clinically diagnosed tumor fever or infection, who received medical treatment from palliative care specialists in 10 nationwide Japanese hospitals, were consecutively identified during August 2012 and November 2014. The symptoms, physical findings, blood test results at baseline and during fever, imaging findings, and sociodemographic factors of these patients were retrospectively extracted.
Results: Thirty-three patients with tumor fever and 72 patients with infection were identified. Their mean age was 68.8 years, 68 (64.8%) were men, and the median palliative performance status (PPS) was 50. Statistically significant factors predicting tumor fever by logistic regression analysis were as follows: deterioration of PPS (odds ratio, 0.078), shaking chills during fever (0.067), and change from baseline data of neutrophil/lymphocyte ratio of =5 (0.14).
Conclusions: Shaking chills during fever, and changes from baseline of performance status and white blood cell differentiation can be useful to differentiate between tumor fever and infection among advanced cancer patients. Further confirmatory studies are needed.
"Les soins palliatifs sont-ils en fin de vie ?". Interrogeait le chef du service au Centre hospitalier universitaire (CHU) de Québec lors d'une conférence de presse en décembre 2018 [...].
Au cours des dernières années, les soins palliatifs se sont fait particulièrement remettre en question dans quelques-unes de leurs prétentions ; notamment celle de réhabiliter la mort comme une étape naturelle de la vie, [...].
Si les questionnements se multiplient et s'imposent, les réponses elles, demeurent incertaines. [...] Ultimement, les soins palliatifs ont à être réfléchis [à nouveau !], repensés et rediscutés dans des perspectives philosophiques, éthiques, sociologiques et anthropologiques. En effet, les préoccupations relatives à la fin de la vie humaine et à sa valeur, ne peuvent être réduites à des considérations médico-hospitalières. [...]
La mort et mourir demeurent des réalités humains complexes existentiels. Elles interpellent chaque personne au plus profond d'elle-même et suscitent souvent une quête de sens révélant toute l'incertitude inhérente à ces expériences singulières.
[Extraits de l'article]
In medical practice, physicians are often faced with tough ethical and moral dilemmas, one such example is the reoccurring conflict between a patient’s hope and the truth. This paper explores two ethical dilemmas centered on compassion and the reduction of suffering: truth-telling with terminal patients and the clinical use of placebos. In each case the disclosure of truthful information could interfere with hope and suffering relief.
Introduction: The objective of the presented research is to characterize hope in the situational dimension, i.e., health, in the patients with cancer in the terminal phase of the disease, being treated in hospices and palliative care centers. Hope is very important for all the patients, especially for patients with cancer in various phases of the disease. Giving up on oncologic therapy and causal treatment is often associated with a transition into palliative care. When death and a loss of values become a threat, the individual has got hope to rely on.
Material and Methods: The study relies on the Test to Measure Hope in the Health Context (NCN-36) by B.L. Block. 246 patients in the terminal phase of cancer participated in the study.
Results: The internal structure of hope of recovery in the patients' group was varied. The patients showed low levels of hope of recovery since they do not believe in the effectiveness of treatment. They were also not convinced of the effectiveness of modifications in dieting, lifestyle, or the use of nonconventional medicine. They trusted the doctor in charge and were moderately satisfied with the therapy in use. The intensity of hope of recovery was on the low level in the patients in the terminal phase of cancer. Age, sex, place of living, and marital status had a significant influence on the level of hope of recovery. Variables such as living on one's own or living with one's family, socioeconomic status, education, or profession did not affect the level of hope of recovery.
Conclusions: The presented results allowed as to conclude that the assessment of hope in terminally ill cancer patients can be considered as one of the important tools enabling the personalization and the improvement of palliative care.
The terminal stage of disease in teenagers is extremely complex to manage. In this study, we share some stories of terminally ill adolescent patients who made use of illusion as a way to overcome their anguish in their final stages of illness. These experiences show how young patients can cope better with terminal illness by resorting to a nonrational and fictional dimension that can serve them as a psychological compromise, helping them tolerate their real everyday life by suspending their critical senses for a while. Illusions can serve as a resource for young patients and a potentially useful tool for medical professionals.
Objectives: In an ageing society, community-based medical education in a home care setting needs to be developed. Drawing on Kolb's experiential learning theory, this study aimed to explore the learning processes in overnight home care by medical trainees in terms of their understanding of terminally ill patients and their conceptualization of themselves as future physicians.
Methods: An overnight home care program in which a trainee had to take care of terminally ill patients on his/her own under the supervision of a healthcare team was conducted. Nineteen trainees, including eight medical students and 11 residents, participated in this study. Text data of reflective reports written after the overnight care were collected and thematically analyzed.
Results: The trainees' learning experiences in the program were categorized into four stages: predeparture, concrete experience, reflective observation and abstract conceptualization. Although they had mixed feelings, including anxiety, fear and expectations, at the predeparture stage, they could be actively involved in providing medical care and daily life support and in taking care of dying patients at the patients' homes overnight. By reflecting on their experiences, they gained a sense of achievement and identified the aspects upon which they should improve as future physicians. Subsequently, based on their reflective observation, they conceptualized their approaches to home care and the roles/responsibilities of physicians as healers, which led to professional identity formation.
Conclusions: Overnight home care by medical trainees has the potential as an educational strategy to promote their realistic understanding of home care and facilitate professional identity formation.
CONTEXT: Advance care planning is essential to enable informed medical decisions to be made and to reduce aggressiveness in EOL care.
OBJECTIVES: This study aimed to explore whether a Question Prompt List (QPL) adapted to French language and culture could promote discussions, particularly on prognosis and EOL issues, among advanced cancer patients attending outpatient palliative care (PC) consultations.
METHODS: In this multicentre randomised study, patients assigned to the intervention arm received a QPL to help them prepare for the next consultation one month later. The main inclusion criteria were advanced cancer patients referred to the PC team with an estimated life expectancy of less than one year. The primary endpoint was the number of questions raised, globally and by topic. The secondary objectives were the impact of the QPL on psychological symptoms, quality-of-life (QoL), satisfaction with care and coping styles at two months.
RESULTS: Patients (n=71) in the QPL arm asked more questions (mean 21.8 versus 18.2, p-value=0.03) than patients in the control arm (n=71), particularly on PC (5.6 versus 3.7, p-value=0.012) and EOL issues (2.2 versus 1, p=0.018), but not on prognosis (4.3 versus 3.6, NS). At two months, there was no change in anxiety, depression or QoL in either arm; patient satisfaction with doctors' technical skills was scored higher (p-value=0.024) and avoidance coping responses were less frequent (self-distraction, p-value=0.015; behavioural disengagement, p-value=0.025) in the QPL arm.
CONCLUSIONS: Questions on PC and EOL issues in outpatient palliative care consultations were more frequent and patient satisfaction was better when a QPL was made available prior to the consultation.
Background: Understanding end-of-life (EOL) and palliative care continues to grow. However, little attention has been paid to the experiences, preferences, and needs of older lesbian, gay, bisexual, transgender, and queer (LGBTQ) women. While some universal expectations or preferences at EOL exist, this population may not receive adequate or appropriate attention or reporting of unique EOL issues and experiences.
Objective: Systematically search for and narratively review existing evidence concerning the expectations, preferences, and needs for palliative and EOL care of LGBTQ older women.
Design: A comprehensive literature review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles reporting needs, experiences, and perspectives of palliative care and EOL care among LGBTQ older women were evaluated.
Measurements: Articles published between 1996 and 2019 were retrieved from PsycINFO, MEDLINE, Cochrane Library, Academic Search Complete, AgeLine, CINHAL, PubMed, LGBT Life, SocINDEX, Women's Studies International, Joanna Briggs Institute, and Open Grey.
Results: A total of 16 articles were included. Articles described several concerns for the overall LGBTQ population; however, additional issues and experiences specific to older LGBTQ women were also identified, including vulnerability associated with isolation and poverty, women's social needs and support networks, and preferences for complementary care.
Conclusion: There remains a need for further research with older LGBTQ women concerning palliative and EOL care, particularly around preparation for EOL and preferences for support. Inclusion of diverse populations in terms of sexual and gender identification are needed to fully understand how to provide appropriate and preferred support.
INTRODUCTION: Caring for terminally ill children influences nurses' and allied health provider's quality of life, ability to provide personalized, dignified and empathetic care and even their concepts of personhood. In the absence of data this review utilizes the Ring Theory of Personhood (RToP) to evaluate how a physician's concept of personhood is affected caring for terminally ill children in order to better support them holistically.
METHODS: Using PRISMA Guidelines, 14 researchers carried out independent searches of PubMed, CINAHL, PsycINFO, Cochrane Library and gray literature databases for articles published between 2000 to 2019. Concurrent and independent employment of content and thematic analysis (Split Approach) was used to enhance the trustworthiness of the analysis.
RESULTS: 13,424 titles and abstracts were retrieved, 188 full texts were evaluated, and 39 articles were included and analyzed. Identical categories and themes identified using the Split Approach suggest that caring for dying children in PPC impacts the physician's professional identity, clinical decision making, personal well-being and relationships. The data also suggests that the magnitude of these effects depends on the presence of protective and risk factors.
CONCLUSION: Aside from providing a novel insight into the upon the physician, this review proffers a unique approach to accounting for the presence, magnitude and influence of incoming catalysts, resultant conflicts, and protective and risk factors upon the physician's personhood. Further studies into the changes in personhood are required. Design of a personalized assessment tool based on the RToP will help direct timely, appropriate and personalized support to these physicians.
CONTEXT: Terminally ill patients (TIP) frequently visit the emergency department (ED), but the prevalence of these visits is unclear.
OBJECTIVE: To determine the prevalence of TIP visiting the ED.
METHODS: Systematic review of observational studies published between 1998 and 2018 reporting adults TIP who used the hospital ED, searching in PubMed, CINAHL, SciELO, LILACS, and Cochrane. Three evaluators selected and extracted data (kappa concordance 0.63). The quality of the studies was evaluated with the Newcastle-Ottawa scale and global estimates were made, calculating combined prevalence (95% confidence interval [CI]) and heterogeneity of the studies (I2).
RESULTS: We identified 2429 publications, ultimately including 31 studies in 14 countries; 79% were from high-income countries, 21% from medium-income countries and none from low-income countries. Most were from 2015. We found that 45% of cancer patients visited the ED in the last month of life (95% CI 37-54%) and 75% in the last 6 months of life (95% CI 62-83%); I2 100%. Overall, 17% of patients who visited the ED had a terminal illness (95% CI 12-23%); I2 98%. Few studies reported terminal non-oncologic illness, specific age groups or diseases, hospital admission rates, use of palliative care or non-resuscitation, or other criteria that could be used for grouping.
CONCLUSIONS: Patients with terminal cancer frequently use the ED at the end of life, although use varies among patients and few studies have examined low-income countries or patients with non-oncologic terminal illness. The global prevalence of TIP in the ED cannot be calculated from limited reports.
CONTEXT: Palliative care referrals (PCR) improve symptom management, provide psychosocial and spiritual support, clarify goals of care and facilitate discharge planning. However, very late PCR can result in increased clinician distress and prevent patients and families from benefitting from the full spectrum of interdisciplinary care.
METHODS: Consecutive first-time inpatient PCR from September 1, 2013 to August 31, 2017 were identified to determine the frequency and predictors of referrals within 24 hours of death. We compared the clinical characteristics with a random sample of patients discharged alive or died more than 24 hours after first-time PCR as a control, stratified by year of consult in a 1:1 ratio.
RESULTS: Of 7,322 first-time PCR, 154 (2%) died within 24 hours of referral. These patients were older (p=0.003) and had higher scores for depression (p=0.0009), drowsiness (p=0.02) and shortness of breath (p=0.008) compared to a random sample of 153 patients discharged alive or died more than 24 hours after first-time PCR. Patients who received a PCR within 24 hours of death were more likely than the control group to have ECOG 4 (95% vs. 25%, p<0.0001), delirium (89% vs. 17%, p<0.0001), DNR code status (81% vs. 18%, p<0.0001), and hematologic malignancies (39% vs. 16%, p<0.0001). In the multivariate analysis, depression (OR 1.4, p=0.005), DNR code status (OR 9.1, p=0.003) and ECOG 4 (OR 9.8, p=0.003) were independently associated with first-time PCR within 24 hours of death.
CONCLUSION: While only a small proportion of first-time PCR occurred in the last 24 hours of life, the patients had a significant amount of distress, indicating a missed opportunity for timely palliative care intervention. These sentinel events call for specific guidelines to better support patients, families and clinicians during this difficult time. Further research is needed to understand how to minimize very late PCR.
BACKGROUND: Dignity is an inherent value in palliative care, but understanding dignity among people living with and hospitalized for incurable esophageal cancer has not been explored.
OBJECTIVE: The aim of this study was to empirically explore the meaning of dignity in people hospitalized with incurable esophageal cancer.
METHODS: A qualitative hermeneutic approach, inspired by Gadamer, guided the research process and interpretation of the transcribed interviews. Eighteen patients participated in the study.
RESULTS: The meaning of dignity was revealed as reverential response in care relationships and eating as an undignifying activity. A balance of the healthcare system's framework with the lifeworld of the patient was significant in preserving dignity and gave patients a sense of reverent response. Patients were unable to eat ordinary daily meals, which affected their perception of own body and identity, including interactions with others. The resulting bodily changes and social consequences were of crucial importance to the perceived dignity.
CONCLUSIONS: A dialogical and understanding approach is significant in making the patient feel worthy, consequently helping to uphold a sense of dignity. The changing and decaying body due to eating difficulties bears witness to illness, altering the individual's sense of self, in turn threatening the dignity of identity.
IMPLICATION FOR PRACTICE: The care should be based on a reverential response based on the patients' lifeworld. In doing so, storytelling might be a way. Palliative care for these people needs to stress that patients share other aspects of life that is not totally dominated by their illness, inability to eat, and unrecognizable body.