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.
Background: Early referral of cancer patients for palliative care significantly improves the quality of life. It is not clear which patients can benefit from an early referral, and when the referral should occur. A Delphi Panel study proposed 11 major criteria for an outpatient palliative care referral.
Objective: To operationalize major Delphi criteria in a cohort of lung cancer patients, using a prospective approach, by linking health administrative data.
Design: Population-based observational cohort study.
Setting/Subjects: The study population comprised 38,851 cases of lung cancer in the Ontario Cancer Registry, diagnosed from January 1, 2012, to December 31, 2016.
Measurements: We operationalized 6 of the 11 major criteria (4 diagnosis or prognosis based and 2 symptom based). Patients were considered eligible (index event) for palliative care if they qualified for any criterion. Among eligible patients, we identified those who received palliative care.
Results: Twenty-eight thousand one hundred sixty-four patients were eligible for palliative care by qualifying for either the diagnosis- or prognosis-based criteria (n = 21,036, 76.5%), or for symptom-based criteria (n = 7128, 23.5%). A total of 23,199 (82.4%) patients received palliative care. The median time from palliative care eligibility to the receipt of first palliative care or death or maximum study follow-up was 56 days (range = 17–348).
Conclusions: We operationalized six major criteria that identified the majority of lung cancer patients who were eligible for palliative care. Most eligible patients received the palliative care before death. Future research is warranted to test these criteria in other cancer populations.
Palliative care was initially developed for patients with advanced cancer. The concept has evolved and now encompasses any life-threatening chronic disease. Studies carried out to compare end-of-life symptoms have shown that although symptoms such as pain and dyspnea are as prevalent in patients with lung disease as in patients with cancer, the former receive less palliative treatment than do the latter. There is a need to refute the idea that palliative care should be adopted only when curative treatment is no longer possible. Palliative care should be provided in conjunction with curative treatment at the time of diagnosis, by means of a joint decision-making process; that is, the patient and the physician should work together to plan the therapy, seeking to improve quality of life while reducing physical, psychological, and spiritual suffering.
OBJECTIVES: To estimate differences in spending and utilization between hospice users and non-users with lung cancer by length of hospice enrollment.
STUDY DESIGN: Retrospective analysis using 2009-2013 Medicare claims.
METHODS: The study sample was a 10% random sample of Medicare fee-for-service beneficiaries with lung cancer who died between 2010 and 2013. We identified different categories of hospice users (hospice enrollment for 1-7 days, 8-14 days, 15-30 days, 31-60 days, 61 days - 6 months) and non-users. We used propensity score matching to match users in each enrollment category with non-users. The outcomes were: a) total Medicare spending, b) number of hospitalizations, c) number of emergency department (ED) visits, d) number of physician-administered chemotherapy claims, and e) number of radiation therapy sessions. Regression analysis was used to compare outcomes between users and non-users by enrollment period.
RESULTS: Hospice users had significantly lower spending, fewer hospitalizations, and fewer ED visits than non-users across all categories of hospice enrollment. Large savings occurred when patients stayed in hospice for at least one month (US$16,566 for those enrolled 61 days - 6 months; US$16,409 for those enrolled 31-60 days). Significant reduction in use of outpatient services including chemotherapy and radiation therapy was observed among patients using hospice for at least 1 month.
CONCLUSIONS: Hospice led to cost savings by reducing utilization of aggressive care towards end-of-life among lung cancer patients. While cost savings were realized even when hospice is utilized for a short duration, large savings occurred when hospice is used for at least 1 month.
Background: Aggressive care at the end of life (EOL) is a persistent issue for patients with stage IV nonsmall cell lung cancer (NSCLC). We evaluated the use of concurrent care (CC) with hospice care and cancer-directed treatment simultaneously within the Veteran's Health Administration (VHA) and aggressive care at the EOL.
Objective: To determine whether VHA facility-level CC is associated with changes in aggressive care at the EOL.
Design/Setting: Veterans with stage IV NSCLC who died between 2006 and 2012 and received lung cancer care within the VHA.
Measurements: The primary outcome was aggressive care at EOL (i.e., hospital admissions, chemotherapy, and intensive care unit) within the last month of life. To compare aggressive care across VHA facilities, we used a random intercept multilevel logistic regression model to examine the association between facility-level CC within each study year (<10%, 10% to 19%, and =20%) and aggressive care at the EOL among the decedents as a binary outcome.
Results: In total, 18,371 veterans with NSCLC at 154 VHA facilities were identified. Facilities delivering CC for =20% of veterans (high CC) increased from 20.0% in 2006 to 43.2% in 2012 (p < 0.001). Overall, hospice care significantly increased and aggressive care at EOL decreased over the study period. However, facility-level CC adoption was not associated with any difference in aggressive care at EOL (adjusted odds ratio high CC vs. low CC: 0.91 [95% CI, 0.79 to 1.05], p = 0.21).
Conclusions: Although the VHA adoption of CC increased hospice use among patients with NSCLC, additional measures may be needed to decrease aggressive care at the EOL.
BACKGROUND: Patients with advanced non-small cell lung cancer greatly care about where they will die. Most people in Japan preferred their location of death as their homes. But only 8.2% of patients with cancer spend their last days at home with palliative care in Japan. Many patients with cancer are still going to spend their last days at a hospital (81.7%).
OBJECTIVE: We examined the survival times of such patients according to their place of death; that is, whether they died at home, at a hospice, or at a hospital, and investigated patient characteristics.
RESULTS: Among the 313 patients recruited, 214 were analyzed in this study: 90, 49, and 75 received hospital-based, home-based, and hospice-based palliative care, respectively. The patients who died at a hospice exhibited significantly longer survival than those who died at hospital (estimated median survival time, 420 days [95% confidence interval [CI]: 325-612 days] versus 252 days [95% CI: 201-316 days]; P < .0001). The characteristics of patients did not differ significantly according to place of death.
CONCLUSIONS: Patients who died at a hospice or at home exhibited significantly longer survival than those who died at a hospital for advanced non-small cell lung cancer.
Background: Lung transplant recipients with serious illness may benefit from but rarely receive specialty palliative care (SPC) services. Transplant pulmonologists' views of SPC may be key to understanding SPC utilization but have not been well characterized.
Objectives: (1) To understand how transplant pulmonologists view SPC and decide to refer transplant recipients and (2) to identify unique aspects of lung transplantation that may influence referral decisions.
Design: We conducted semistructured interviews with transplant pulmonologists at nine geographically diverse high-volume North American transplant centers with SPC services. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework related to SPC views and referral decisions.
Results: We interviewed 38 transplant pulmonologists; most (36/38) had referred lung transplant recipients to SPC. Participants described SPC as a medical specialty that aims to improve quality of life and distinguished SPC from hospice care, which was considered end-of-life care. Participants who viewed transplant as a temporary solution (n = 17/38, 45%) described earlier utilization of SPC alongside disease-directed therapies, whereas those who viewed transplant as survival-focused (n = 21/38, 55%) described utilization of SPC after disease-directed therapies were exhausted. Concerns about one-year survival metrics and use of addicting medications for symptom palliation were barriers to referral.
Conclusions: Transplant pulmonologists' SPC referral practices may be related to their views of lung transplantation. Optimizing use of SPC in lung transplantation will require improving communication between transplant pulmonology and SPC to ensure a collaborative effort toward patient-centered goals while addressing unique barriers to SPC referral.
Metastatic renal cell carcinoma (RCC) is a leading cause of cancer deaths in developed nations. The past decade has seen the approval of numerous systemic therapies for RCC, most recently immune checkpoint inhibitors (ICI). Nivolumab, an anti-programmed cell death 1 antibody, was superior to everolimus in a large phase 3 trial in clear-cell RCC (ccRCC), and is now approved by the US Food and Drug Administration for metastatic RCC after progression on prior anti-antiangiogenic therapy. The overall response rate is 25%, and there is a subset of patients who demonstrate pseudoprogression where initial tumor growth is followed by decreased tumor burden. Differentiating between progression and pseudoprogression has been chanllenging.
Herein we report the case of a patient with metastatic ccRCC with clinical deterioration and progression after 3 doses of nivolumab who went to hospice, only to come back 6 months later with less disease.
BACKGROUND: Lung transplant recipients who experience serious illness could benefit from specialty palliative care (SPC), but evidence suggests that referral has been rare.
OBJECTIVE: Examine the characteristics of post-transplant SPC encounters, utilization trends, and patient characteristics associated with SPC at a center with established SPC services.
DESIGN: Retrospective cohort study of SPC utilization by 597 lung transplant recipients transplanted between 2010 and 2015. We collected data on pretransplant demographics and post-transplant SPC encounters, including timing, location, and referral reasons. Cumulative incidence of SPC and patient characteristics associated with SPC were examined by competing risks methods. Utilization in the first two post-transplant years was compared between subcohorts defined by year of transplantation.
RESULTS: SPC cumulative incidence was 27% and 43% at one and five years. More than 60% of encounters occurred in the first post-transplant year including 34% during the index transplant hospitalization. Over 90% of encounters occurred in the inpatient setting. The majority of consults were for symptom management. From 2010 to 2015 inpatient utilization in the first two post-transplant years increased from 23% to 42%, and outpatient utilization increased from 2% to 16%. Accounting for increasing utilization, pretransplant SPC and double-lung transplantation were associated with greater incidence of post-transplant SPC.
CONCLUSIONS: Lung transplant recipients may have palliative care needs early after transplantation. Increasing utilization suggests greater awareness of or changing attitudes about the utility of SPC for lung transplant recipients. Understanding transplant recipients' palliative care needs and transplant physicians' views of SPC is critical to improving the provision of SPC in lung transplantation.
BACKGROUND: Evidence suggests that the aggressiveness of care in cancer patients at the end of life is increasing. We sought to evaluate the use of invasive procedures at the end of life in patients with advanced non-small-cell lung cancer (NSCLC).
OBJECTIVE: To evaluate the utilization of invasive procedures at the end of life in Veterans with advanced NSCLC.
DESIGN: Retrospective cohort study of Veterans with newly diagnosed stage IV NSCLC who died between 2006 and 2012.
SETTING/SUBJECTS: Subjects were identified from the Veterans Affairs Central Cancer Registry.
MEASUREMENTS: All Veterans Administration (VA) and Medicare fee-for-service healthcare utilization and expenditure data were assembled for all subjects. The primary outcome was the number of invasive procedures performed in the last month of life. We classified procedures into three categories: minimally invasive, life-sustaining, and major-operative procedures. Logistic regression analysis was used to evaluate factors associated with the receipt of invasive procedures.
RESULTS: Nineteen thousand nine hundred thirty subjects were included. Three thousand (15.1%) subjects underwent 5523 invasive procedures during the last month of life. The majority of procedures (69.6%) were classified as minimally invasive. The receipt of procedures in the last month of life was associated with receipt of chemotherapy (odds ratio [OR] 3.68, 95% confidence interval [CI] 3.38-4.0) and ICU admission (OR 3.13, 95% CI 2.83-3.45) and was inversely associated with use of hospice services (OR 0.35, 95% CI 0.33-0.38).
CONCLUSIONS: Invasive procedures are commonly performed among Veterans with stage IV NSCLC during their last month of life and are associated with other measures of aggressive end-of-life care.
Introduction: To determine whether an upfront combination compared to single-agent therapy is beneficial for elderly patients with advanced non-small cell lung cancer (NSCLC) in the real world, a population-based epidemiologic study was conducted.
Methods: Patients =70 years with advanced NSCLC from 2007 to 2012 were identified in the National Health Insurance Service Database of Korea. A Cox proportional-hazards regression model and propensity score analysis were used to examine the effect of treatment modality on survival.
Results: Among 41,276 patients newly diagnosed with lung cancer, 8274 (20.0%) identified to be treated with upfront palliative chemotherapy were eligible for this study. After excluding 976 patients who received a first-line anti-epidermal growth factor receptor (EGFR) treatment, 7298 (88.2%) who received cytotoxic chemotherapy were included in further analyses: 5636 (77.2%) received doublet chemotherapy and 1662 (22.8%) received monotherapy. The most frequent regimen in combination group was gemcitabine and platinum doublet (44.7%), whereas that in monotherapy group was gemcitabine (46.7%). Multivariate analyses indicated lower use of combination chemotherapy with increasing age (odds ratio [OR] 0.73; 95% CI 0.67–0.79; P < 0.001) and female sex (OR 0.71; 95% CI 0.62–0.80; P < 0.001). Receipt of combination over single-agent chemotherapy was associated with a reduced risk of death (hazard ratio [HR] 0.91; 95% CI 0.86–0.96; P = 0.001) in overall population and (HR 0.89; 95% CI 0.80–0.98; P = 0.019) in the propensity-matched cohort.
Conclusion: In elderly patients with advanced NSCLC excluding those receiving frontline anti-EGFR targeted agents, receiving initial combination chemotherapy compared to single-agent was associated with improved survival.
Suite à la publication des "Protocoles pour les personnes atteintes de maladie pulmonaire obstructive chronique (MPOC) en fin de vie" par le RQAM en 2006, nous avons déployé dans les Laurentides un projet-pilote sur la MPOC en fin de vie. Il a pour objectifs généraux, notamment de : - Partager une vision commune quant aux aspects cliniques ; - Accroître les services aux personnes atteintes de MPOC en phase de soins de fin de vie ; - Supporter les instances régionales et locales dans l'organisation des services de soins palliatifs de fin de vie pour les personnes atteintes de MPOC ; - Valider un outil de prédictivité du pronostic de survie de la MPOC. Plus précisément, par ce projet, le Dr Guy Cournoyer a tenté de cibler la fin de vie des patients atteints de MPOC en deçà de 18 mois dans le but de nous aider à déterminer le moment où les soins de confort devraient graduellement remplacer les soins curatifs. Nous désirons introduire cette clientèle aux équipes de soins palliatifs de fin de vie. Nous voulons également augmenter le nombre de patients atteints de MPOC ayant pu exprimer leurs volontés de fin de vie et le nombre de décès à domicile. Dans un souci de respect des volontés de fin de vie, nous désirons diminuer les interventions médicales invasives durant les derniers mois précédant le décès. Nous espérons offrir une continuité des services aux différents stades de la maladie et assurer une qualité des services offerts par les équipes interdisciplinaires. Finalement, nous voulons améliorer les connaissances des intervenants sur la maladie pulmonaire obstructive chronique en fin de vie. Nous avons créé un Comité d'implantation régional avec l'élaboration de différents outils de collecte de données et de liaison. De plus, une formation sur la MPOC en fin de vie a été créée et plus de 300 professionnels et médecins ont déjà été formés. Dans le but d'évaluer les résultats et de les comparer dans le cadre d'un projet de recherche, nous nous sommes associés au CSSS de Trois-Rivières afin d'avoir un groupe-contrôle. Les résultats préliminaires obtenus nous permettent de croire que les critères de pronostic établis semblent prédictifs de la mortalité de cette clientèle. De plus, les impacts au niveau de la qualité, de la quantité et de l'accessibilité des soins sont déjà palpables. Toutefois, après l'évaluation finale du projet avec l'aide du Centre de recherche et d'expertise en évaluation de l'École nationale d'administration publique (CREXE) en mai 2011, nous pourrons réellement voir les impacts de ces changements de pratique sur la clientèle et sur notre offre de service. (R.A.).
Origine : BDSP. Notice produite par SANTECOM rAAnkR0x. Diffusion soumise à autorisation
Background: For most colorectal cancer patients with initial lung metastasis (LM), the only suitable treatments are palliative, including palliative local therapy and pharmacotherapy. We investigated the role of palliative local treatments in prolonging survival and the efficacy of different pharmacotherapies.
Patients and Methods: After performing a medical record review of 2233 patients with metastatic colorectal cancer, 684 were identified as having LM. Their clinicopathologic characteristics, treatment patterns, and outcomes were analyzed retrospectively.
Results: For nonresectable initial LM, patients receiving palliative local therapy had significantly longer median progression-free survival (PFS) and overall survival (OS) than those treated with pharmacotherapy alone: PFS 16.1 months versus 7.4 months (P < .001) and OS 51.8 months versus 23.8 months (P < .001), respectively. Cox multivariate analysis confirmed the survival benefit induced by palliative local therapy. Chemonaive patients receiving single-agent fluoropyrimidine had shorter PFS and longer OS compared to oxaliplatin- or irinotecan-based doublets when used as first-line treatment (PFS 4.8, 7.4, and 7.3 months; and OS 28.7, 21.2, and 20.1 months, respectively); however, these differences were not statistically significant. The addition of targeted agents to cytotoxic drugs prolonged PFS (10.5 vs. 7.2 months, P = .005) but not OS (27.8 vs. 21.2 months, P = .454). Carcinoembryonic antigen level, LM-associated symptoms, extrapulmonary disease, and histopathologic type were independent pretreatment prognostic factors.
Conclusion: Local treatments of LM may confer a survival benefit in the palliative setting. First-line single-agent fluoropyrimidine may be used in patients with good prognosis.
Background: Pulmonary arterial hypertension (PAH) is a terminal disease that can be diagnosed in children and adults. Adverse effects of treatment combined with a terminal illness can lead to a plethora of unmet patient needs that can be addressed by palliative care (PC).
Aim: The primary aim was to assess access to PC among pediatric PAH programs. The secondary aim was to describe barriers to utilization.
Method: A survey using multiple choice and analog scale was distributed in May 2016 to query access and utilization of PC among PAH specialists in North America and attitudes regarding aspects of PC as it relates to PAH patients. The results were analyzed descriptively and reported as percentages and medians (interquartile range).
Results: Of 30 surveys completed, 93% reported having access. Of respondents with access, 82% reported that they had referred to PC in the past, and 64% in the last 12 months. The most common reason for using PC was for psychosocial, emotional, and/or spiritual needs related to terminal illness (86%). Concepts identified as barriers were negative connotation, timing of referral, increased anxiety, and lack of PC education.
Conclusion: Adequate access to PC is reported; however, utilization is suboptimal. Referral is also delayed, which may result in patients being less prepared for end of life. Provider perceptions of PC support the notion of PC, but incorporation of these services is difficult because of its negative connotation, lack of knowledge surrounding PC, fear of increased anxiety with referral, and difficulty knowing when to refer.
Pediatric lung transplantation has advanced over the years, providing a potential life-prolonging therapy to patients with cystic fibrosis. Despite this, many challenges in lung transplantation remain and result in worse outcomes than other solid organ transplants. As CF lung disease progresses, children and their caregivers are often simultaneously preparing for lung transplantation and end of life. In this article, we will discuss the current barriers to success in pediatric CF lung transplantation as well as approaches to end of life care in this population.
Background: Family caregivers are a key communication source for nurses, and there is a need to provide communication skill building for caregivers.
Objective: A pilot study was conducted to determine feasibility and use of a communication coaching telephone intervention aimed at improving caregiver confidence in communication and reducing psychological distress.
Methods: A printed communication guide for caregivers and a 1-time communication coaching call delivered by a research nurse were provided to caregivers. Recruitment and attrition, implementation and content of coaching calls, caregiver outcomes, and satisfaction with intervention were analyzed.
Results: Twenty caregivers were recruited across 4 cohorts-diagnosis, treatment, survivorship, and end of life-with recruitment greater than 70%. Caregiver calls averaged 37 minutes, and most caregivers reported communication challenges with family members. Caregiver action plans revealed a need to develop communication skills to ask for help and share information. Caregivers reported satisfaction with the print guide, and 90% of caregivers followed through with their action plan, with 80% reporting that the action plan worked. Caregiver confidence in communication with healthcare providers was improved, except for caregivers of cancer survivors.
Conclusions: Recruitment and attrition rates demonstrate feasibility of the intervention. Caregivers reported that the communication coaching telephone intervention was considered valuable and they were able to implement a communication action plan with others.
Implications for practice: Lessons were learned about intervention content, namely, that nurses can help caregivers learn communication strategies for asking for help, sharing cancer information, and initiating self-care.
Introduction: Patient-centred care is essential to the delivery of healthcare; however, this necessitates direct patient involvement in clinical decision-making and can be challenging for patients diagnosed with advanced non-small cell lung cancer where there may be misunderstanding of the extent of disease, prognosis and aims of treatment. In this context, decisions are complex and there is a need to balance the risks and benefits, including treatment with palliative intent. The aim of the PACT study is to identify the information and decision support needs of patients, leading to the development of an intervention to support patients with advanced lung cancer when considering treatment options.
Methods and analysis: PACT is a five-stage, multimethod and multicentre study. Participants: Patients and health professionals will be recruited from three health boards. Methods: Non-participant observation of multidisciplinary team meetings (n=12) will be used to determine patients' allocation to treatment pathways (stage I). Non-participant observation of patient-clinician consultations (n=20-30) will be used to explore communication of treatment options and decision-making. Extent of participation in decision-making will be assessed using the Observing Patient Involvement in Shared Decision-Making tool. Interviews with patients (stage III) and their clinicians (stage IV) will explore the perception of treatment options and involvement in decision-making. Based on stages I-IV, an expert consensus meeting will finalise the content and format of the intervention. Cognitive interviews with patients will then determine the face validity of the intervention (stage V). Analysis: analysis will be according to data type and research question and will include mediated discourse analysis, thematic analysis, framework analysis and interpretative phenomenological analysis.
Ethics and dissemination: Ethical approval has been granted. The study findings will contribute to and promote shared and informed decision-making in the best interest of patients and prudent healthcare. We therefore aim to disseminate results via relevant respiratory, oncology and palliative care journals and conferences.
Objectives: Palliative care is underused in non-malignant respiratory diseases, including interstitial lung diseases (ILDs). We investigated current practices around palliative and supportive care and explored the impact of a supportive care decision aid tool.
Methods: This was a single centre study in a UK ILD centre. Retrospective analysis of hospice referrals and patients with idiopathic pulmonary fibrosis (IPF) under the Bristol ILD (BILD) service were used to identify unmet palliative and supportive care needs. Using quality improvement methodology, we explored the impact of a supportive care decision aid on clinician behaviours for patients with ILD.
Results: 108 patients with ILD were referred for hospice care between 2010 and 2015, representing 0.15% of all referrals, compared with a population prevalence of IPF of 0.9%. The median interval between referral and death was 124 days.Records were reviewed for 64 deceased and 89 living patients with IPF seen on July-December 2014. The decision aid was prospectively assessed with 73 patients. The deceased patients had greater markers of severity. There were no other differences between the groups.After introduction, the decision aid tool was completed for 49.3% of patients and resulted in significant increases in documented discussion of referral to palliative care (11.2%vs53.6%, p<0.01) and end-of-life discussions (15.7%vs91.8%, p<0.01). Tool completion led to an increase in referral for palliative care (2.7%vs16.7%, p<0.01).
Conclusion: Palliative care services are underused in ILD and a supportive care decision aid can prompt consideration of palliative and supportive care needs.
La réadaptation pulmonaire est décrite tant dans le contexte des soins palliatifs que comme une option thérapeutique indépendante. Un cas clinique illustre comment la réadaptation pulmonaire prodiguée en même temps que les soins palliatifs peut améliorer la qualité de vie du patient.
Les auteurs ont examiné dans quelle mesure les patients nouvellement diagnostiqués avec un cancer du poumon avancé voulaient être informés et
impliqués dans la prise de décision médicale. L'étude a aussi cherché à savoir si les patients sentaient que leurs préférences avaient été respectées. Pour cela, des patients de 13 hôpitaux en Flandre ont été interrogés.
L'étude conclue que les préférences de ces patients concernant les informations sur des sujets délicats et une prise de décision partagée avec le médecin n'étaient pas été bien remplies.