Maman a un cancer, un lymphome, un gros pamplemousse qui l'empêche de respirer dans le poumon. On suit le parcours de soins, du diagnostic au traitement jusqu'à la guérison, à travers les yeux d'un petit garçon et de son papa.
Simon et Annabelle sont à l'école primaire ensemble et sont amoureux. Un jour, Simon tombe malade : une leucémie. Malgré les traitements, il meurt. L'album présente les émotions traversées par Annabelle.
Introduction: Palliative care is specialized health care focused on improving the quality of life amid serious illness. Patients with hematologic malignancies have significant needs that could be addressed by a multidisciplinary palliative care team, but the integration of palliative care into hematology is far behind that of solid tumor oncology. Areas covered: This article considers what is known about the palliative care needs of hematologic malignancy patients, shows how the multidisciplinary palliative care team could improve their care, and explores how barriers to this relationship might be overcome. The evidence to support this review comes from review of recent, relevant papers known to the authors as well as PubMed searches of additional relevant articles over the past 3 years. Expert opinion: Further cultivating this relationship requires us to thoughtfully integrate the multidisciplinary palliative care team to respond to each patient's specific disease and needs, and do so at the ideal time, to maximize benefits.
Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients' palliative and end-of-life care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patient-reported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population.
OBJECTIVE: The use of chemotherapy near the end of life is not advisable. There are scarce data in Europe but shows signs of aggressiveness. We designed this study to analyze the proportion of onco-hematological patients receiving chemotherapy within their last 2 weeks of life as well as starting a new chemotherapy regimen in the 30 days prior to death.
METHODS: A retrospective observational study was conducted in a tertiary hospital. Adults who died of an onco-hematological neoplasia while hospitalized between April 2017 and March 2018 were included. We assessed the use of chemotherapy over the course of the last 14 days of life, defined as the administration of at least one dose of chemotherapy. We also examined the proportion of patients starting a new chemotherapy regimen in the last 30 days of life.
RESULTS: A total of 298 inpatients died in the Hematology and Oncology units. During the last 14 days, 28.2% (n = 11) of hematological and 26.3% (n = 68) of oncological patients received chemotherapy; the overall rate was 26.5% (n = 79). Furthermore, the proportion of patients starting a new chemotherapy regimen in the last 30 days of life was high (20.5% and 20.8%, respectively). Female gender (odds ratio [OR] = 1.99, 95% confidence interval [CI] = 1.18-3.35) and age <45 (OR = 2.68, 95% CI = 1.05-6.88) were associated with higher rates of chemotherapy.
CONCLUSION: The proportion of patients receiving chemotherapy in the last 14 days of life was high, as well as the proportion of patients starting a new regimen in their last 30 days. This was indicative of excessive aggressiveness at the end-of-life care.
Context: Patients with blood cancers have low rates of timely hospice use. Barriers to hospice use for this population are not well understood. Lack of transfusion access in most hospice settings is posited as a potential reason for low and late enrollment rates.
Objectives: We explored the perspectives of blood cancer patients and their bereaved caregivers regarding the value of hospice services and transfusions.
Methods: Between June 2018 and January 2019, we conducted three focus groups with blood cancer patients with an estimated life expectancy = 6 months and two focus groups with bereaved caregivers of blood cancer patients. We asked participants their perspectives regarding quality of life (QOL) and about the potential association of traditional hospice services and transfusions with QOL. A hematologic oncologist, sociologist, and qualitatively-trained research assistant conducted thematic analysis of the data.
Results: 27 participants, 18 patients and nine bereaved caregivers, participated in the five focus groups. Participants identified various QOL domains that were important to them but focused largely on a desire for energy to maintain physical/functional wellbeing. Participants considered transfusions a high-priority service for their QOL. They also felt that standard hospice services were important for QOL. Bereaved caregivers reported overall positive experiences with hospice.
Conclusion: Our analysis suggests that although blood cancer patients value hospice services, they also consider transfusions vital to their QOL. Innovative care delivery models that combine the elements of standard hospice services with other patient-valued services like transfusions are most likely to optimize end-of-life care for patients with blood cancers.
PURPOSE: Patients with hematological malignancies (HM) have more unpredictable disease trajectories compared to patients with advanced solid tumors (STs) and miss opportunities for a palliative care approach. They often undergo intensive disease-directed treatments until the end of life with frequent emergency department (ED) visits and in-hospital deaths. Insight into end-of-life trajectories and quality of end-of-life care can support arranging appropriate care according to patients' wishes.
METHOD: Mortality follow-back study to compare of end-of-life trajectories of HM and ST patients who died <3 months after their ED visit. Five indicators based on Earle et al. for quality of end-of-life care were assessed: intensive anticancer treatment <3 months, ED visits <6 months, in-hospital death, death in the intensive care unit (ICU), and in-hospice death.
RESULTS: We included 78 HM patients and 420 ST patients, with a median age of 63 years; 35% had Eastern Cooperative Oncology Group performance status 3-4. At the ED, common symptoms were dyspnea (22%), pain (18%), and fever (11%). After ED visit, 91% of HM patients versus 76% of ST patients were hospitalized (P = .001). Median survival was 17 days (95% confidence interval [CI]: 15-19): 15 days in HM patients (95% CI: 10-20) versus 18 days in ST patients (95% CI: 15-21), P = .028. Compared to ST patients, HM patients more often died in hospital (68% vs 30%, P < .0001) and in the ICU or ED (30% vs 3%, P < .0001).
CONCLUSION: Because end-of-life care is more aggressive in HM patients compared to ST patients, a proactive integrated care approach with early start of palliative care alongside curative care is warranted. Timely discussions with patients and family about advance care planning and end-of-life choices can avoid inappropriate care at the end of life.
Objective: The completion rates of advance treatment preferences in patients with hematologic malignancies are low. To improve these rates, the modifiable factors associated with completion need to be determined. This study aimed to examine the associations of patient attitudes toward, and knowledge about, advance directives (ADs) with the patient–caregiver dyadic completion of advance treatment directive surveys.
Methods: Using a nonexperimental correlational design, 44 patient–caregiver dyads completed the questionnaires, including a Korean-Advance Directive model. Cohen's kappa coefficient and multiple logistic regression analyses examined the extent of dyadic agreement and patient factors for the dyadic completion of the advance treatment directive survey, respectively.
Results: A minor group of patients (4.5%–11.4%) and caregivers (11.4%–18.2%) preferred aggressive end-of-life treatments, whereas more patients (47.7%) and caregivers (68.2%) supported hospice care. The only significant patient–caregiver dyadic concordance on treatment directives was for chemotherapy with a moderately high agreement (kappa = 0.60: 95% CI: 2.51–3.73). One score increase in AD knowledge and having a history of hematopoietic stem cell transplant (HSCT) increased the likelihood of dyadic completion of the treatment directive survey by 43% (p = 0.039) and 917% (p = 0.047), respectively.
Conclusions: The patient–caregiver dyads in the setting of hematologic malignancy had a moderately high concordance with chemotherapy but were not associated with other treatment options. A higher level of AD knowledge and HSCT were associated with dyadic completion of the AD survey. Educational support is important to increase knowledge regarding ADs through ongoing palliative discussions among hematologic patients and their caregivers.
BACKGROUND: Palliative care (PC) for patients with malignant hematological diseases is scarcely documented, particularly in low- and middle-income countries. This study aimed to document PC provided to patients with hematologic malignancies.
METHODS: Bidirectional study conducted from July 2016 to June 2019 at the hematology and palliative care departments at a reference center in Northeast Mexico for low-income open population uninsured patients. Clinical records and electronic files of patients with malignant hematological diseases of both sexes and all ages attending an academic hematology center were reviewed. Statistical analysis was performed with the SPSS version 22 program. Acute and chronic leukemias, multiple myeloma, Hodgkin lymphoma, non-Hodgkin lymphoma, and others were included.
RESULTS: Five-hundred ten patients were studied, of which 148 (29%) died. Eighty-one (15.88%) patients including 31 (20.9%) who died received PC. Median age at palliative diagnosis was 42 (2-91) years. The most common symptom was pain (69.7%). The most frequent reason for palliative referral was treatment-refractory disease (39%). During the last week of life, 19 (95%) of 20 patients had blood sampling; 17 (85%) received antibiotics; 16 (80%) had a urinalysis performed; 16 (80%) received analgesia, including paracetamol (11, 35.5%) and buprenorphine (7, 22.6%); 10 (50%) received blood products; 9 (45%) were intubated; and central venous catheters were inserted in 5 (25%) patients.
CONCLUSIONS: Palliative care was provided to a minority of patients with hematologic malignancies and considerable improvement is required in its timely use and extension.
Background: The prognosis of an aggressive lymphoma can change dramatically following failure of first-line treatment. This sudden shift is challenging for the promotion of illness understanding and advance care planning (ACP). Yet, little is known about illness understanding and ACP in patients with aggressive lymphomas.
Objective: To examine illness understanding, rates of engagement in ACP, and reasons for lack of ACP engagement in patients with advanced B cell lymphomas.
Design: Cross-sectional observational study.
Setting/Subjects: Patients (n = 27) with aggressive B cell lymphomas that relapsed after first- or second-line treatment treated at a single urban academic medical center.
Measurements: Participants were administered structured surveys by trained staff to obtain self-report measures of illness understanding (i.e., aggressiveness, terminality, curability) and ACP (i.e., discussions of care preferences, completion of advance directives).
Results: The majority of patients reported discussing curability (92.6%), prognosis (77.8%), and treatment goals (88.9%) with their medical team. Yet, less than one-third of patients reported being terminally ill (29.6%) and having incurable disease (22.2%). Most patients had a health care proxy (81.5%) and had decided about do-not-resuscitate status (63%), but the majority had not completed a living will (65.4%) or discussed their care preferences with others (55.6%).
Conclusions: The accuracy of lymphoma patients' illness understanding following first-line treatment is difficult to determine due to the potential for cure following transplant. However, this study suggests that a large proportion of patients with advanced B cell lymphomas may underestimate the severity of their illness, despite discussing illness severity with their medical team. Providing patients with information on prognosis, and the ACP process may increase engagement in ACP.
Background: Patients with blood cancers experience high-intensity medical care near the end of life (EOL) and low rates of hospice use; attributes of goals of care (GOC) discussions may partly explain these outcomes.
Methods: By using a retrospective cohort of patients with blood cancer who received care at Dana-Farber Cancer Institute and died in 2014, the authors assessed the potential relationship between timing, location, and the involvement of hematologic oncologists in the first GOC discussion with intensity of care near the EOL and timely hospice use.
Results: Among 383 patients, 39.2% had leukemia/myelodysplastic syndromes, 37.1% had lymphoma, and 23.7% had myeloma. Overall, 65.3% of patients had a documented GOC discussion. Of the first discussions, 33.2% occurred >30 days before death, 34.8% occurred in the outpatient setting, and 46.4% included a hematologic oncologist. In multivariable analyses, having the first discussion >30 days before death (odds ratio [OR], 0.37; 95% CI, 0.17-0.81), in the outpatient setting (OR, 0.21; 95% CI, 0.09-0.50), and having a hematologic oncologist present (OR, 0.40; 95% CI, 0.21-0.77) were associated with lower odds of intensive care unit admission =30 days before death. The presence of a hematologic oncologist at the first discussion (OR, 3.07; 95% CI, 1.58-5.96) also was associated with earlier hospice use (>3 days before death).
Conclusions: In this large cohort of blood cancer decedents, most initial GOC discussions occurred close to death and in the inpatient setting. When discussions were timely, outpatient, or involved hematologic oncologists, patients were less likely to experience intensive health care use near death and were more likely to enroll in hospice.
To date, few studies have examined the end-of-life (EOL) care for patients with hematological malignancies (HMs). We evaluated the effects of palliative care on the quality of EOL care and health care costs for adult patients with HMs in the final month of life.We conducted a population-based study and analyzed data from Taiwan's Longitudinal Health Insurance Database, which contains claims information for patient medical records, health care costs, and insurance system exit dates (our proxy for death) between 2000 and 2011.A total of 724 adult patients who died of HMs were investigated. Of these patients, 43 (5.9%) had received only inpatient palliative care (i-Pal group), and 19 (2.6%) received home palliative care (h-Pal group). The mean health care costs during the final month of life were not significantly different between the non-Pal and Pal groups (p=0.315) and between the non-Pal, i-Pal, and h-Pal groups (p=0.293) either. By the multivariate regression model, the i-Pal group had lower risks of chemotherapy, ICU admission, and receipt of CPR, but higher risks of at least two hospitalizations and dying in hospital after adjustments. The h-Pal group had the similar trends as the i-Pal group but lower risk of dying in hospital after adjustments. Patients with HMs who had received palliative care could benefit from less aggressive EOL cancer care in the final month of life. However, 8.6% patients with HMs received palliative care. The related factors of more hospitalizations and dying in hospital warrant further investigation.
PURPOSE OF REVIEW: The disease-related burden of patients with hematological malignancies is comparable with patients suffering from solid tumors. Palliative care offers relief from suffering independent of type of disease and prognosis. The prevalence of hematological malignancies is expected to increase in the next 20 years because of better therapeutic options with longer survival and because of the aging population. However, patients with hematological malignancies are underrepresented in palliative care as these diseases are associated with special care needs and prognostic uncertainty, which differ from the unambiguity of terminally ill patients with solid tumors. This review describes the recent studies and guidelines addressing the problems in palliative care for patients with hematological malignancies.
RECENT FINDINGS: Recent research covers prognostic uncertainty, challenges in terms of the acute death setting, and blood transfusions in the terminally ill as well as interdisciplinary collaboration. In addition to qualitative approaches exploring reasons for these challenges, criteria that indicate the approaching end of life in hematological malignancies were systematically developed and tested. Further, the effectiveness of palliative care addressing the hematopoietic stem cell transplantation setting was further analyzed.
SUMMARY: The patients' perspective needs to be involved in future research to examine whether the connotation of 'palliative care' is a barrier for patients, families or healthcare professionals. Communication culture and skills have already been identified as goals for medical training. Further studies should identify the effective elements of palliative care specific for hematological malignancies and develop feasible support models, including informal caregivers.
Despite advances in the management of hematologic malignancies, a significant proportion of patients die of their disease. We used administrative databases in Ontario, Canada (between 2005 and 2013) to determine the number of days spent at home in the last 6 months of life. We studied the predictors of the median number of days at home (DAH) using quantile regression. For the 11,127 patients with hematologic malignancies who died, the median number of DAH in the last 6 months was 156 days. Patients with acute leukemias (p < .0001), women (p < .0001), and those requiring transfusions (p < .0001) spent the fewest DAH. Patients assessed by palliative care prior to their last 6 months were likely to spend more time at home (p < .0001). Providing additional supports for patients nearing the end of life, including earlier access to palliative care and continued transfusion support, may increase the likelihood that patients can die at home.
Background: Hospice is an effective end-of-life care approach for patients with incurable illnesses such as multiple myeloma; however, it has been historically underutilized. In addition to improving quality of life, hospice enrollment reduces healthcare spending in many incurable illnesses but this has been unstudied in the myeloma population to date.
Material and Methods: Retrospective analysis of myeloma cases diagnosed from 2007 to 2013 in the Surveillance, Epidemiology, and End Results (SEER)-Medicare linked dataset. Included patients were: diagnosed at age 65 or older, received myeloma-directed therapy, had an overall survival >3 months, and were enrolled in Medicare the month preceding death. Costs included those paid by Medicare and patient copays during the 30 days preceding death.
Results: 2075 patients were included in the analysis. 56% were enrolled in hospice at end of life. Increasing age and female gender were associated with greater odds of hospice enrollment. Non-white race, Medicaid enrollment, and increasing comorbidities were associated with decreased odds. Hospice enrollment was associated with a $13,574 (p < .0001) decrease in costs; however, the maximal savings were observed by those enrolled >14 days prior to death.
Conclusion: While improving quality of life should be the ultimate reason for increasing hospice utilization among patients with myeloma, there seems to be considerable cost implications as well.
Hematologic malignancies differ in several important ways from solid organ cancers, and warrant a unique approach to palliative care (PC) integration. As PC has moved upstream from end-of-life care, PC clinicians are increasingly asked to see patients with hematologic malignancies. Unfortunately, many PC specialists have limited knowledge of these diseases, and have had few prior opportunities to participate in their care. This article, written by hematologic oncologists and PC specialists, seeks to educate PC teams about the unique features of hematologic malignancies, to inform effective integration of PC into the care of these patients, their caregivers, and treating hematologists.
BACKGROUND: Patients with multiple myeloma, an incurable haematological cancer, often receive palliative care only late in their trajectory. Criteria for early referral are lacking.
AIM: To identify which patients might benefit from early integration, by identifying trajectories of health-related quality of life and the determinants for declining or poor Health related quality of life .
DESIGN: Prospective, longitudinal cohort study.
PARTICIPANTS: Multiple myeloma patients at all stages (newly diagnosed, first-line or second-line treatment, early or later treatment-free interval, refractory disease) from in- and outpatient units at 14 hospitals in England were recruited. In addition to clinical information and standardised Health related quality of life and psychological aspects, the Myeloma Patient Outcome Scale (MyPOS) measured palliative care concerns.
RESULTS: A total of 238 patients were recruited, on average 3.5 years (SD: 3.4) post-diagnosis. Latent mixture growth models identified four Health related quality of life trajectories. Classes 3 and 4 represent trajectories of stable poor Health related quality of life or declining Health related quality of life over an 8-month period. The strongest predictors of poor outcome at the end of follow-up were general symptom level (odds ratio (OR): 1.3, 95% CI: 1.0–1.6, p = 0.028), presence of clinically relevant anxiety (OR: 1.2, 95% confidence interval (CI): 1.0–1.4, p = 0.019), and presence of pain (OR: 1.02, 95% CI: 1.0–1.1, p = 0.018), all being more predictive than demographic or clinical characteristics.
CONCLUSION: General symptom level, pain and presence of anxiety predict declining Health related quality of life in multiple myeloma. Identification of patients with palliative care needs should focus on assessing patient-reported symptoms and psychosocial well-being for identifying those at risk of deterioration.
Cet article fait état d’une étude préparatoire portant sur le suivi psychologique de patients hospitalisés en secteur protégé d’hématologie. La littérature anglo-saxonne, dont les auteures ont publié une recension, montre que le secteur protégé est délétère pour la santé psychologique des patients et qu’il est nécessaire de penser aux modalités de prise en charge psychologique. Il existe peu d’études en France sur ce sujet. Le présent travail rend compte, sous forme de trois études de cas, d’une phase exploratoire au cours de laquelle les patients ont été inclus dans un dispositif basé sur l’aire transitionnelle et le soutien à la narrativité. Les résultats de cette étude montrent que : 1/les modalités de régression dont dispose le sujet, elles-mêmes liées à sa tolérance à supporter la passivité sont déterminantes pour affronter la maladie et l’isolement ; 2/cette expérience extrême fait caisse de résonance, réactivant chez les patients des pans douloureux de leur histoire.
Aim: The aim of this study was to evaluate the therapeutic efficacy and safety profile of orally administered low-dose ketamine for procedural pain management in pediatric cancer patients undergoing lumbar puncture (LP) in a resource-limited hospital setting.
Methods: Patients between 4 and 15 years of age, with leukemia, undergoing LP were asked to participate. The study was designed as a two-armed blinded placebo-controlled trial where 0.8 mg/kg (bodyweight) of ketamine mixed in juice was given 30 minutes before the procedure to Group K (ketamine) compared with placebo, only juice, to Group P (placebo). In addition, topical analgesia (EMLA®) was given according to established standard of care. Patients and caregivers assessed the pain using the Wong–Baker Faces Pain Rating Scale.
Results: A total number of 52 patients, equally distributed between Group K and Group P, were included in the study. The placebo-controlled group had significantly higher self-reported pain score than the group receiving ketamine (p = 0.046), as well as in caregiver-assessed pain (p = 0.033). Only three incidents of mild adverse effects were reported.
Conclusion: Low-dose oral ketamine can be safely administered for procedural analgesia in pediatric cancer patients undergoing LP in a resource-limited hospital setting and have significant pain-reducing effect compared with placebo.
PURPOSE: We designed a novel, manualized intervention called Emotion And Symptom-focused Engagement (EASE) for acute leukemia (AL) and report here on a phase II randomized controlled trial (RCT) to assess its feasibility and preliminary efficacy.
METHODS: Patients were recruited within 1 month of hospital admission and randomized to EASE plus usual care (UC) or UC alone. EASE includes (1) EASE-psy, a tailored psychotherapy delivered over 8 weeks, and (2) EASE-phys, weekly physical symptom screening over 8 weeks to trigger early palliative care. The primary outcome was traumatic stress symptoms; secondary outcomes included physical symptom burden and quality of life. Assessments were conducted at baseline and at 4, 8, and 12 weeks. Between-group differences were evaluated using multilevel modeling.
RESULTS: Forty-two patients were randomized to EASE (n = 22) or UC (n = 20), with 76% retention at 12 weeks. Predefined feasibility outcomes were met: 86% (19/22) of EASE participants completed = 50% of EASE-psy sessions (goal = 64%); 100% received Edmonton Symptom Assessment System (ESAS, modified for AL) screenings, 64% (14/22) of whom completed = 50% of planned screenings (goal =50%); and 100% with scores = 4/10 on any physical ESAS-AL item had = 1 meeting with the EASE-phys team (goal 100%). Significant treatment-group differences favoring EASE were observed in traumatic stress symptoms at 4 and 12 weeks, and pain intensity and interference at 12 weeks (all p < .05).
CONCLUSIONS: EASE is feasible in patients newly diagnosed with AL and shows promise of effectiveness. These results warrant a larger RCT to provide evidence for its more routine use as a standard of care.