AIM/PURPOSE: This integrative review addresses whether the presence and timing of advanced care planning (ACP) with or without a palliative care (PC) consultation affect place of death and use of high-intensity medical care at end-of-life (EOL) in adolescent and young adult and adult cancer patients receiving hematopoietic stem cell transplant (HSCT) therapy.
METHODS AND RESULTS: A literature search was completed in the Scopus and PubMed databases. The search was not restricted by date but was restricted to English language. A total of 1,616 articles were found, and after exclusion of duplicates and irrelevance, 79 articles were available to review. After reviewing inclusion and exclusion criteria, 9 articles related to ACP with HSCT were found, and 4 were eliminated after further review, resulting in 5 viable articles for review related to EOL outcomes. EOL outcomes reviewed were place of death and high-intensity medical care. Factors noted to influence these measures included the presence or absence of ACP, the timing of ACP, and PC consultation. Overall survival also emerged as an EOL outcome affected by ACP.
CONCLUSION: Although there have been many barriers identified to ACP discussions in the HSCT population, the findings from the integrative literature review support the use of early ACP with patients who have hematologic malignancies undergoing HSCT to address patient EOL goals and reduce healthcare utilization at the EOL. The data also suggest that identification of patients who would most benefit from early engagement in ACP may positively impact outcomes.
Objective: Develop and pilot-test a nurse-led primary palliative care intervention for patients with advanced hematologic malignancies.
Background: Nurse-led primary palliative care interventions may improve outpatient palliative care provision for patients with advanced hematologic malignancies.
Methods: This two-phase, single-arm pilot study involved patients with recurrent or resistant hematologic malignancies, their caregivers, and oncology clinicians at two US-based urban, university-affiliated oncology clinics. Measurements included feasibility (enrollment rates, intervention fidelity, and outcome assessment rates) and acceptability (patient, caregiver, and clinician surveys).
Results: In Phase 1 we developed and implemented an oncology nurse-led primary palliative care intervention for patients with recurrent or resistant hematologic malignancies and their caregivers. In Phase 2, we tested feasibility and acceptability. Twenty-six patient participants enrolled. Consent-to-approach rate was 78% and enrolled-to-consent rate was 84%. All enrolled participants received the intervention per protocol. Sixty-nine percent of patients and 100% of caregivers reported that the intervention helped them better understand the patient's illness and cope. Seventy-five percent of oncologists reported that the intervention improved their patients' quality of care, and 25% reported that it helped them take better care of patients.
Conclusions: Although our pilot of oncology nurse-led primary palliative care for patients with advanced hematologic malignancies met some of its secondary feasibility endpoints, it did not meet its primary feasibility endpoint (enrollment) and acceptability was mixed. Protecting nursing staff time, increasing patient and clinician involvement in intervention development, and identifying patients with highest supportive needs may improve feasibility and acceptability of future primary palliative care in hematologic malignancy trials.
Introduction: La population soignée pour une hémopathie maligne bénéficie moins souvent et plus tardivement de soins palliatifs spécialisés bien qu’ils soient aussi symptomatiques que les patients atteints de cancers solides. S’il existe des recommandations claires sur le bénéfice des soins palliatifs pour ces patients, la démarche à adopter est peu abordée.
Méthode: Dans un centre universitaire français, et à la suite de l’arrivée d’un médecin ayant bénéficié d’une double formation en hématologie et en soins palliatifs, une initiative de consultation spécialisée en soins palliatifs dans le service d’hématologie a permis d’augmenter l’accès aux soins palliatifs pour les patients atteints d’hémopathie maligne.
Résultats: La population bénéficiant de cette consultation avait une grande variabilité dans ses caractéristiques et sa survie mais était quasiment toujours symptomatique. Elle a pu être orientée en grande partie vers une équipe de soins palliatifs pluridisciplinaire, hospitalière ou ambulatoire. Cette offre a entraîné une double augmentation du nombre de passages de l’équipe mobile de soins palliatifs dans les services d’hématologie et du nombre de patients atteints d’hémopathie maligne hospitalisés en soins palliatifs.
Discussion: Cette initiative locale montre qu’il est possible et indiqué, pour un patient atteint d’hémopathie maligne, de bénéficier de soins palliatifs spécialisés, même précocement dans sa prise en charge. C’est à présent une volonté politique et institutionnelle qui doit établir, dans le partage des ressources de santé, les priorités de soins, notamment en fin de vie.
BACKGROUND: Early palliative care together with standard haematological care for advanced patients is needed worldwide. Little is known about its effect. The aim of the review is to synthesise the evidence on the impact of early palliative care on haematologic cancer patients' quality of life and resource use.
PATIENTS AND METHODS: A systematic review was conducted. The search terms were early palliative care or simultaneous or integrated or concurrent care and haematological or oncohaematological patients. The following databases were searched: PubMed, Embase, Cochrane, CINHAL and Scopus. Additional studies were identified through cross-checking the reference articles. Studies were in the English language, with no restriction for years. Two researchers independently reviewed the titles and abstracts, and one author assessed full articles for eligibility.
RESULTS: A total of 296 studies titles were reviewed. Eight articles were included in the synthesis of the results, two controlled studies provided data on the comparative efficacy of PC interventions, and six one-arm studies were included. Since data pooling and meta-analysis were not possible, only a narrative synthesis of the study results was performed. The quality of the two included comparative studies was low overall. The quality of the six non-comparative studies was high overall, without the possibility of linking the observed results to the implemented interventions.
CONCLUSIONS: Studies on early palliative care and patients with haematological cancer are scarce and have not been prospectively designed. More research on the specific population target, type and timing of palliative care intervention and standardisation of collected outcomes is required.
PROSPERO REGISTRATION NUMBER: CRD42020141322.
Introduction: La transfusion de concentrés plaquettaires en fin de vie en onco-hématologie ne fait pas l’objet de recommandations et dépend des représentations partagées par les patients, les infirmiers et les hématologues. L’objectif de cette étude est de décrire ces représentations de la transfusion plaquettaire dans un contexte d’hémopathie grave et avancée à travers les représentations sociales de ses protagonistes.
Méthodes: Une étude qualitative, utilisant la méthode du réseau d’association et incluant trois groupes de 15 participants (patients en phase avancée d’une hémopathie maligne, régulièrement transfusés en plaquettes, infirmiers et médecins) issus de quatre centres d’hématologie a été conduite entre février et avril 2019. L’analyse a été réalisée avec le logiciel IraMuTeQ.
Résultats: Les patients attendent de la transfusion plaquettaire un impact bénéfique direct sur leur santé et mettent en avant l’importance de la relation humaine. Les infirmiers visent le bien-être du patient, dans son individualité, et le respect du protocole transfusionnel. Les médecins cherchent à soulager les symptômes en prenant en compte une multitude de facteurs décisionnels. La classification hiérarchique descendante permet de nuancer les résultats précédents en individualisant quatre orientations différentes, indépendantes des groupes de participants : la dépendance, la singularité, la subjectivité et la neutralité.
Discussion: La perception des représentations sociales liées à la transfusion plaquettaire en fin de vie devrait permettre d’adapter le discours à l’orientation préférentielle de son interlocuteur et constituer un atout dans la discussion des objectifs de soins avec les patients, comme entre professionnels de santé.
Background: Decisions to limit treatment (DLTs) are important to protect patients from overtreatment but constitute one of the most ethically challenging situations in oncology practice. In the Ethics Policy for Advance Care Planning and Limiting Treatment study (EPAL), we examined how often DLT preceded a patient’s death and how early they were determined before (T1) and after (T2) the implementation of an intrainstitutional ethics policy on DLT.
Methods: This prospective quantitative study recruited 1.134 patients with haematological/oncological neoplasia in a period of 2×6 months at the University Hospital of Munich, Germany. Information on admissions, discharges, diagnosis, age, DLT, date and place of death, and time span between the initial determination of a DLT and the death of a patient was recorded using a standardised form.
Results: Overall, for 21% (n=236) of the 1.134 patients, a DLT was made. After implementation of the policy, the proportion decreased (26% T1/16% T2). However, the decisions were more comprehensive, including more often the combination of ‘Do not resuscitate’ and ‘no intense care unit’ (44% T1/64% T2). The median time between the determination of a DLT and the patient’s death was similarly short with 6 days at a regular ward (each T1/T2) and 10.5/9 (T1/T2) days at a palliative care unit. For patients with solid tumours, the DLTs were made earlier at both regular and palliative care units than for the deceased with haematological neoplasia.
Conclusion: Our results show that an ethics policy on DLT could sensitise for treatment limitations in terms of frequency and extension but had no significant impact on timing of DLT. Since patients with haematological malignancies tend to undergo intensive therapy more often during their last days than patients with solid tumours, special attention needs to be paid to this group. To support timely discussions, we recommend the concept of advance care planning.
INTRODUCTION: Patients with haematological malignancies may not be receiving appropriate referrals to palliative care and continuing to have treatments in the end stages of their disease. This systematic review of qualitative research aimed to synthesise healthcare professionals' (HCPs) views and experiences of palliative care for adult patients with a haematologic malignancy.
METHODS: A systematic search strategy was undertaken across eight databases. Thomas and Harden's approach to thematic analysis guided synthesis on the seventeen included studies. GRADE-GRADEQual guided assessment of confidence in the synthesised findings.
RESULTS: Three analytic themes were identified: (a) "Maybe we can pull another 'rabbit out of the hat'," represents doctors' therapeutic optimism, (b) "To tell or not to tell?" explores doctors' decision-making around introducing palliative care, and (c) "Hospice, home or hospital?" describes HCPs concerns about challenges faced by haematology patients at end of life in terms of transfusion support and risk of catastrophic bleeds.
CONCLUSION: Haematologists value the importance of integrated palliative care but prefer the term "supportive care." Early integration of supportive care alongside active curative treatment should be the model of choice in haematology settings in order to achieve the best outcomes and improved quality of life.
OBJECTIVES: Patients with haematological malignancies (HM) receive more aggressive treatments near the end-of-life (EOL) than patients with solid tumours. Palliative care (PC) needs are less widely acknowledged in patients with multiple myeloma (MM) than in other HM. The main objective of our study was to describe EOL care and PC referral in a population of older patients with MM.
METHODS: We retrospectively included deceased inpatients and outpatients with an MM previously diagnosed at the age of 70 and over in two tertiary centres in France. We reported EOL characteristics regarding treatments considered to be aggressive-antimyeloma therapies, hospitalisations, blood product transfusions, intensive care units (ICUs) or emergency admissions-and PC referral.
RESULTS: We included 119 patients. In their last month of life, 75 (63%) were hospitalised for fever, pain, asthenia, anaemia or bleeding, 49 (41%) were admitted in the emergency department and 12 (10%) in ICU, 76 (64%) still received antimyeloma therapy and 45 (38%) had at least two transfusions. Only 24 (20%) received PC intervention for pain, global care, family support, anxiety, social care or confusion. Median follow-up until death was 20 days.
CONCLUSIONS: Our study found a high rate of hospitalisations and antimyeloma therapies in the last month of life. The PC referral rate was low, often once specific treatments were stopped. Our results suggest the need for more effective collaboration between PC teams and haematologists in order to respond to the specific needs of these patients and to improve their quality of care at EOL.
Patients with hematologic malignancies are thought to receive more aggressive end-of-life (EOL) care and have suboptimal hospice use compared with patients with solid tumors, but descriptions of EOL outcomes from comprehensive cohorts have been lacking. We used the population-based Surveillance, Epidemiology, and End Results-Medicare dataset to describe hospice use and indicators of aggressive EOL care among Medicare beneficiaries who died of hematologic malignancies in 2008-2015. Overall, 56.5% of decedents used hospice services for median 9 days (interquartile range, 3-27), 33.0% died in an acute hospital setting, 36.8% had an intensive care unit (ICU) admission in the last 30 days of life, and 13.3% received chemotherapy within the last 14 days of life. Hospice use was associated with 96% lower probability of inpatient death (adjusted risk ratio [aRR], 0.038; 95% confidence interval [CI], 0.035-0.042), 44% lower probability of an ICU stay in the last 30 days of life (aRR, 0.56; 95% CI, 0.54-0.57), and 62% decrease in chemotherapy use in the last 14 days of life (aRR, 0.38; 95% CI, 0.35-0.41). Hospice enrollees spent on average 41% fewer days as inpatient during the last month of life (adjusted means ratio, 0.59; 95% CI, 0.57-0.60) and had 38% lower mean Medicare spending in the last month of life (adjusted means ratio, 0.62; 95% CI, 0.61-0.64). These associations were consistent across histologic subgroups. In conclusion, EOL care quality outcomes and hospice enrollment were suboptimal among older decedents with hematologic cancers, but hospice use was associated with a consistent decrease in aggressive care at EOL.
Hepatocellular carcinoma is a common cancer with a poor prognosis, associated with high economic costs and a significant burden of disease. While it is often asymptomatic in the early stages, patients may experience great discomfort from advanced disease, treatment adverse effects or decompensation of underlying cirrhosis. Palliative care has the potential to markedly improve quality of life, physical and psychological symptoms in patients with end-stage liver disease, and has been shown to prolong survival in some non-hepatocellular carcinoma malignancies. However, this service is underutilized in hepatocellular carcinoma and referrals are frequently late due to factors such as stigmatization, inadequate resources, lack of education for non-palliative care physicians and inadequate modelling for integration of palliative and supportive care within liver disease services. In the future, education workshops, population-based awareness campaigns, increased funding and improved models of care, may improve the uptake of palliative care and subsequently optimize patient care, particularly towards the end of life.
Background: Patients with hematologic malignancies (HM) often receive aggressive care at the end of life (EOL). Early palliative care (PC) has been shown to improve EOL care outcomes, but its benefits are less established in HM than in solid tumors.
Objectives: We sought to describe the use of billed PC services among Medicare beneficiaries with HM. We hypothesized that receipt of early PC services (rendered >30 days before death) may be associated with less aggressive EOL care.
Design: Retrospective cohort analysis
Setting/Subjects: Using the Surveillance, Epidemiology, and End Results-Medicare registry, we studied patients with leukemia, lymphoma, myeloma, myelodysplastic syndrome, or myeloproliferative neoplasm who died between 2001 and 2015.
Measurements: We described trends in the use of PC services and evaluated the association between early PC services and metrics of EOL care aggressiveness.
Results: Among 139,191 decedents, the proportion receiving PC services increased from 0.4% in 2001 to 13.3% in 2015. Median time from first encounter to death was 10 days and 84.3% of encounters occurred during hospitalizations. In patients who survived >30 days from diagnosis (N = 120,741), the use of early PC services was more frequent in acute leukemia, women, and black patients, among other characteristics. Early PC services were associated with increased hospice use and decreased health care utilization at the EOL.
Conclusion: Among patients with HM, there was an upward trend in PC services, and early PC services were associated with less aggressive EOL care. Our results support the need for prospective trials of early PC in HM.
Objectives: Hospital death is comparatively common in people with haematological cancers, but little is known about patient preferences. This study investigated actual and preferred place of death, concurrence between these and characteristics of preferred place discussions.
Methods: Set within a population-based haematological malignancy patient cohort, adults (=18 years) diagnosed 2004–2012 who died 2011–2012 were included (n=963). Data were obtained via routine linkages (date, place and cause of death) and abstraction of hospital records (diagnosis, demographics, preferred place discussions). Logistic regression investigated associations between patient and clinical factors and place of death, and factors associated with the likelihood of having a preferred place discussion.
Results: Of 892 patients (92.6%) alive 2 weeks after diagnosis, 58.0% subsequently died in hospital (home, 20.0%; care home, 11.9%; hospice, 10.2%). A preferred place discussion was documented for 453 patients (50.8%). Discussions were more likely in women (p=0.003), those referred to specialist palliative care (p<0.001), and where cause of death was haematological cancer (p<0.001); and less likely in those living in deprived areas (p=0.005). Patients with a discussion were significantly (p<0.05) less likely to die in hospital. Last recorded preferences were: home (40.6%), hospice (18.1%), hospital (17.7%) and care home (14.1%); two-thirds died in their final preferred place. Multiple discussions occurred for 58.3% of the 453, with preferences varying by proximity to death and participants in the discussion.
Conclusion: Challenges remain in ensuring that patients are supported to have meaningful end-of-life discussions, with healthcare services that are able to respond to changing decisions over time.
Hospice programmes are important for providing end-of-life care to patients with life-limiting illnesses. Hospice enrolment improves quality of life for patients with advanced cancer and reduces the risk of depression for caregivers. Despite the clear benefits of hospice care, patients with haematological malignancies have the lowest rates of enrolment among patients with any tumour subtype. Furthermore, when patients with haematological disorders do enrol into hospice care, they are more likely to do so within 3 days of death than are patients with non-haematological malignancies. Although reasons for low and late hospice use in this population are multifactorial, a key barrier is limited access to blood transfusions in hospice programmes. In this Viewpoint, we discuss the relationship between transfusion dependence and hospice use for patients with blood cancers. We suggest that rather than constraining patients into either transfusion or hospice models, policies that promote combining palliative transfusions with hospice services are likely to optimise end-of-life care for patients with haematological malignancies.
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.