OBJECTIVES: Early palliative care leads to meaningful improvements in physical and psychosocial symptoms, as well as quality of life, in patients with advanced cancer. Patients with haematological malignancies, despite a high level of distress, continue to have less access to palliative care services. The aim of this study was to identify haematologists' perceptions of palliative care, as well as barriers to patient referral.
METHODS: We used a qualitative grounded theory methodology. Twenty-four medical haematologists involved in clinical practice from two French centres in Lyon-the Lyon Sud University Hospital and the Léon Bérard Cancer Center-were included. The interview guide questions aimed to establish the clinical situations which triggered referral to palliative care and how participants perceived palliative care.
RESULTS: Data saturation was reached after 14 interviews. The data analysis highlighted four themes. The aim of palliative care was clearly identified as alleviating severe suffering. Palliative care was identified as a separate specialty, and respondents expressed the need for collaboration. Early intervention was perceived as beneficial to avoid certain situations such as hospitalisation or emergency department visits at the end of life. The main barrier to palliative care referral remained the negative connotations associated with the term 'palliative', which was overwhelmingly associated with the end of life.
SIGNIFICANCE OF RESULTS: Our results suggest that the principal barrier to palliative care referral is the term 'palliative care'; haematologists would prefer 'supportive care' instead.
Purpose: Challenges experienced by staff in the Oncology Services Group at Queensland Children's Hospital led to issues with staff retention, well-being, and stress on team culture. Therefore, a customized program was developed through a needs analysis to improve the well-being and resilience of oncology staff, enabling them to cope with stressors and critical incidents inherent in their everyday work and to flourish. The program included education, on-site counselors, mindfulness sessions, debriefing, well-being resources, and improved engagement, support, and communication.
Methods: Evaluation of the program in the first year examined program participation, staff feedback following education workshops and mindfulness sessions, staff retention rates, and the results of an annual organizational staff survey and a program outcome survey.
Results: Approximately 76% of staff attended the Introduction to Well-being workshop, and 98% of responses to survey questions were positive. Staff also provided positive feedback on the other well-being workshops and sessions embedded within existing education programs. Employee Assistance Program counseling sessions had an 81% uptake, with a wide variety of presenting issues, 62% related to work. All participants in mindfulness sessions agreed that it was a valuable tool to improve clinical practice, 94% said it had an immediate positive impact on their well-being, and 70% agreed that they were applying mindfulness principles outside the sessions. Staff retention and turnover improved. Staff reported a positive effect on awareness of self-care, addressing risks to resilience, seeking support from trusted colleagues, coping with critical incidents, and the ability to interact positively with patients and families.
Conclusion: The evaluation showed a positive impact on staff well-being. Although there was a wide variety of successful interventions reported in the literature, sustainability needs to be considered. Feedback on this program found that staff appreciated being listened to, valued, and supported through the strategies, and the ongoing program will continue to monitor staff needs and be responsive in building their resilience and well-being.
Purpose: Around 170 multidisciplinary staff of the Oncology Services Group at Queensland Children's Hospital, Brisbane, care for children with oncology, hematology, and palliative care needs from throughout Queensland and northern New South Wales. A series of challenges impacted staff resilience and retention, and strategies were needed to improve staff well-being and enable them to flourish despite the inherent work stressors.
Methods: A needs analysis was conducted using themes from Discovery Interviews with 51 staff, surveys related to "The Work Stressors Scale - Pediatric Oncology" and "The Work Rewards Scale - Pediatric Oncology" completed by 59 staff, and an organizational staff survey responded to by 51 staff.
Results: The needs analysis informed the development of a customized Oncology Staff Well-being Program with a range of strategies aligned to a PERMA framework for flourishing (positive emotion, engagement, relationships, meaning, and accomplishment). Positive emotion areas included education on topics such as well-being, resilience, responding to escalating behaviors, grief and loss, and self-care. Staff attended the available mindfulness sessions, debriefing and counselors on site, developed self-care plans, and followed a well-being Facebook Group. Engagement was supported through exploring character strengths, improving communication, supporting innovation, and addressing frustrations and safety concerns. Relationships within the team were addressed through team building and social events. Meaning of the work was emphasized through sharing family updates and end of treatment celebrations. Accomplishments of staff were acknowledged in newsletters and meetings.
Conclusion: The needs analysis drove a multifaceted approach to staff well-being with the development of strategies which aligned to a framework that would empower staff to flourish at work. Implementation and evaluation are ongoing and will be reported in a subsequent paper.
PURPOSE OF REVIEW: Patients with hematologic malignancies get more aggressive treatment and the end-of-life, more ICU deaths, and prolonged hospital stays. In comparison to solid tumors, their access to palliative care and hospice is less.
RECENT FINDINGS: Multiple factors seem to play a role including curative goals, different treatment options, stronger relationship between patients and oncologist, symptom burden, and limitations of hospice care. Improving the perception of palliative care in these patients, characterizing their needs, and more education can help to increase referrals and access to palliative care. Innovative ways to improve integration between hematology-oncology and palliative care are needed.
The prescribing of high-cost cancer medicines at the end of life has become a focus of criticism, due primarily to concerns about the safety, efficacy and cost-effectiveness of these medicines in this clinical context. In response to these concerns, a number of interventions have been proposed - frequently focused on improving physician-patient communication at the end of life. Underpinning these strategies is the assumption that the prescribing of high-cost cancer medicines at the end of life is primarily the result of poor communication on the part of cancer physicians. In this paper, we explore the factors perceived by cancer physicians to be driving the use of high-cost cancer medicines at the end of life. Drawing on semi-structured interviews with 16 Australian oncologists and haematologists, we demonstrate that these physicians believe that the use of high-cost medicines at the end of life is driven by multiple factors - including individual, interpersonal, socio-cultural and public policy influences. We conclude that these factors, and their interactions, need to be taken into account in the development of public policy and clinical interventions to address the use of high-cost medicines at the end of life.
Introduction: Notre service d’hospitalisation à domicile (HAD) est spécialisé pour les enfants atteints de cancer et possède une activité palliative importante. Cette étude décrit les caractéristiques des patients suivis en fin de vie par l’HAD, afin de comprendre les facteurs pouvant influencer le lieu de décès.
Méthodes: Nous avons mené une étude observationnelle rétrospective monocentrique sur les patients pédiatriques d’onco-hématologie, traités au moins un jour en HAD lors des 3 derniers mois de vie, et décédés entre le 1er juillet 2013 et le 31 décembre 2015. L’analyse statistique était descriptive et analytique.
Résultats: Soixante-quatorze patients suivis en HAD sont décédés au cours de cette période, parmi lesquels 8 ont été exclus. Quarante-trois patients parmi ces 66 (65 %) sont décédés à domicile. Lors des 3 derniers mois de vie, les patients d’oncologie ont moins de jours d’hospitalisation conventionnelle que les patients d’hématologie. L’implication des médecins généralistes, des infirmières libérales et les informations délivrées aux familles étaient plus importantes dans le groupe des patients décédés à domicile. Aucune association significative n’a été retrouvée entre l’âge du patient, sa pathologie, l’éloignement du domicile par rapport à l’hôpital et le lieu de décès.
Conclusion: Notre service d’HAD a une activité majeure en soins palliatifs et un nombre important de patients décède à domicile. Une collaboration efficiente entre l’équipe d’onco-hématologie et le service d’HAD, ainsi qu’entre l’HAD et les soignants libéraux permet d’optimiser les soins palliatifs.
BACKGROUND: DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible manner. One model of ethical competence for healthcare staff includes three main aspects: being, doing and knowing, suggesting that ethical competence requires abilities of character, action and knowledge. Ethical competence can be developed through experience, communication and education, and a supportive environment is necessary for maintaining a high ethical competence. The aim of the present study was to investigate how nurses and physicians in oncology and hematology care understand the concept of ethical competence in order to make, or be involved in, DNR decisions and how such skills can be learned and developed. A further aim was to investigate the role of guidelines in relation to the development of ethical competence in DNR decisions.
METHODS: Individual interviews were conducted with fifteen nurses and sixteen physicians. The interviews were analyzed using thematic content analysis.
RESULTS: Physicians and nurses in the study reflected on their ethical competence in relation to DNR decisions, on what it should comprise and how it could be developed. The ethical competence described by the respondents related to the concepts being, doing and knowing.
CONCLUSIONS: In order to make ethically sound DNR decisions in oncology and hematology care, physicians and nurses need to develop appropriate virtues, improve their knowledge of ethical theories and relevant clinical guidelines. Ethical competence also includes the ability to act upon ethical judgements. Continued ethical education and discussions for further development of a common ethical language and a good ethical working climate can improve ethical competence and help nurses and physicians cooperate better with regard to patients in relation to DNR decisions, in their efforts to act in the best interest of the patient.
L'amélioration de la prise en charge des enfants atteints de pathologies tumorales en phase palliative passe par une évaluation des pratiques médicales. Une enquête de pratique réalisée auprès de 40 médecins titulaires des 33 centres français d'hématologie-oncologie pédiatrique aide à cerner quelques pistes de réflexion autour d'enfants pour lesquels l'objectif est de mieux les aider à vivre sans l'espoir de les guérir.
BACKGROUND: Integrated palliative care is correlated with earlier end-of-life discussion and improved quality of life. Patients with haematological malignancies are far less likely to receive care from specialist palliative or hospice services compared to other cancers.
AIM: The main goal of this study was to determine hematologists' barriers to end-of-life discussions when potentially fatal hematological malignancies recur.
DESIGN: Qualitative grounded theory study using individual interviews.
SETTING/PARTICIPANTS: Hematologists (n = 10) from four hematology units were asked about their relationships with their patients and their attitudes toward prognosis and end-of-life discussions at the time of recurrence.
RESULTS: As long as there are potential treatments, hematologists fear that end-of-life discussions may undermine their relationship and the patient's trust. Because of their own representations, hematologists have great difficulty opening up to their patients' end-of-life wishes. When prognosis is uncertain, negative outcome, that is, death, is not fully anticipated. Persistent hope silences the threat of death.
CONCLUSION: This study reveals some of the barriers clinicians face in initiating early discussion about palliative care or patients' end-of-life care plan. These difficulties may explain why early palliative care is little integrated into the hematology care model.
Objective: To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists.
Design: Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously.
Results: In total, 186 paediatric neurologists were analysed. If the patient’s prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as ‘do not attempt resuscitation’ orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients’ families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients’ families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient’s prognosis was >1 year.
Conclusion: About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
Dans le cadre du dispositif d’annonce, mesure phare du Plan cancer 2003-2007, les infirmières partagent avec les patients des temps soignants de soutien et de repérage des besoins. L’une d’entre elles, exerçant en hématologie clinique, témoigne de la spécificité des enjeux éthiques auxquels les infirmières sont confrontées, durant ces consultations d’annonce et en équipe pluridisciplinaire, pour accompagner les patients dans leurs parcours de soins.
PURPOSE: As predictors of hematologic toxicity (HT) after palliative radiotherapy (RT) have been studied insufficiently, we explored predictors of leukopenia, neutropenia, and thrombocytopenia attributable to palliative RT.
METHODS: We retrospectively assessed patients with various solid tumors who had received palliative RT at our institution. Excluded from our study were patients who had undergone chemotherapy from one month before to one month after the start of RT. To measure the bone marrow dose, all bones were delineated, and the absolute volume of bone marrow that had received 5, 10, 20, and 30 Gy was recorded. Univariate and multivariate logistic regression analysis was performed to identify variables associated with leukopenia, neutropenia, or thrombocytopenia of grade 2 or higher (HT2+).
RESULTS: Of 68 patients, 17 (25%) developed HT2+. Grade = 2 leukopenia developed in 13 patients (19%), neutropenia in 8 (12%), and thrombocytopenia in 6 (9%). Only one patient experienced = grade 3 toxicity. The median baseline and nadir white blood cell count (WBC) was 6.950 and 4.650x109/l, respectively; the absolute neutrophil count (ANC) was 5.236 and 3.307x109/l, respectively, and the platelet count was 249 and 177.5x109/l, respectively. Multivariate analysis revealed that female gender and a lower baseline WBC and ANC were significant independent predictors of HT2+. No bone marrow dose-volume parameter was a significant predictor of HT2+.
CONCLUSIONS: Overall, HT was relatively mild. Female gender and lower baseline WBC and ANC may be predictors of HT elicited by palliative RT.
The conflicting tasks of treating or managing disease and preparing patients and their families for the end of life are well documented in haematology and palliative care settings. This article is a reflection on practice by a nursing student who was in the fourth year of an internship, and discusses a case study involving a woman at the end of life. It considers the approach to palliative and end of life care adopted in an oncology and haematology ward where there was a reluctance to be realistic about the limitations of treatments among some healthcare practitioners, who did not want to dispel unrealistic expectations of the patient's recovery as a result of continuing treatment. This reflection focuses on the care of a patient at the end of life and the frustration experienced by the nursing student at their inability to alter the direction of treatment from curative treatment to the palliation of symptoms.
This randomized controlled study (pretest, posttest, test control group) was conducted with the aim of determining the effect of music on the severity of dyspnea, anxiety, and hemodynamic parameters in patients with dyspnea. The research was conducted in the Chest Diseases Service of a public hospital in the western region of Turkey. The number of patients included in the sample was determined by power analysis, and as a result, 60 patients were accepted, 30 in the music group and 30 in the control group. Sixty percent of the patients who took part in the study were male, their mean age was 61.21 ± 1.13 years, and their mean dyspnea severity before the intervention was 62.68 ± 22.28. The difference between the mean dyspnea severity and anxiety scores of the music group patients before and after the application of music was found to be statistically significant (P < .05), but no statistically significant difference was found in hemodynamic parameters (P > .05). In light of the research findings, it was concluded that music had an effect on anxiety and the severity of dyspnea in patients with dyspnea but that it had no effect on hemodynamic parameters.
BACKGROUND: Palliative care was originally intended for patients with non-haematological neoplasms and relatively few studies have assessed palliative care in patients with haematological malignancies.
AIM: To assess palliative care interventions in managing haematological malignancies patients treated by onco-haematology departments.
DESIGN: Integrative systematic review with data extraction and narrative synthesis (PROSPERO #: CRD42016036240).
DATA SOURCES: PubMed, CINAHL, Cochrane, Scopus and Web-of-Science were searched for articles published through 30 June 2015. Study inclusion criteria were as follows: (1) published in English or Spanish and (2) containing data on palliative care interventions in adults with haematological malignancies.
RESULTS: The search yielded 418 articles; 99 met the inclusion criteria. Six themes were identified: (1) end-of-life care, (2) the relationship between onco-haematology and palliative care departments and referral characteristics, (3) clinical characteristics, (4) experience of patients/families, (5) home care and (6) other themes grouped together as 'miscellany'. Our findings indicate that palliative care is often limited to the end-of-life phase, with late referral to palliative care. The symptom burden in haematological malignancies patients is more than the burden in non-haematological neoplasms patients. Patients and families are generally satisfied with palliative care. Home care is seldom used. Tools to predict survival in this patient population are lacking.
CONCLUSION: Despite a growing interest in palliative care for haematological malignancies patients, the evidence base needs to be strengthened to expand our knowledge about palliative care in this patient group. The results of this review support the need to develop closer cooperation and communication between the palliative care and onco-haematology departments to improve patient care.
PURPOSE OF REVIEW: The purpose of this review is to synthesize recent literature regarding the provision of palliative care to patients during and following allogeneic HSCT, highlighting factors, which mediate impairments in health-related quality of life in this patient population, and the intervention approaches and models of care delivery that clinicians can consider to address unmet needs for palliative care and to strengthen patient and family resiliency.
RECENT FINDINGS: Provision of palliative care simultaneous with the delivery of treatment directed at the underlying malignancy has emerged as a recommended practice for patients with advanced cancer and high-symptom burden, and a recent randomized trial demonstrates the effectiveness of early palliative care in reducing some of the symptom burden and mood disturbances associated with HSCT. Although more research is needed, there is an expanding body of research-tested interventions to ameliorate the physical and psychological morbidity of HSCT across the transplant trajectory.
SUMMARY: Palliative care interventions delivered by an interdisciplinary team that includes transplant clinicians and palliative care across the HSCT trajectory can alleviate physical and psychological morbidity, thereby improving the patient and family experience of HSCT.
BACKGROUND: In France, advance directives are favourably perceived by most of the population, although the drafting rate is low. This ambivalence is challenging because advance directives are meant to promote the autonomy and freedom of choice of patients. The purpose of this study was to analyse the content of advance directives written by patients suffering from malignant haemopathies to better understand how patients put them into practice. These could be relevant as early as the initial diagnosis of haematological malignancies because of the uncertain course of the disease.
METHODS: This was a multicentre, qualitative, descriptive study. The advance directives written by patients with malignant haemopathies treated in one of the six French hospital departments were included in the study from 01/06/2008 to 15/04/2016. A thematic analysis of the advance directives was performed by two researchers: a senior haematologist and a research assistant.
RESULTS: The median age of the patients was 69. Most were women (sex ratio: 0.59), living as a couple (57%), with lymphoid pathologies (66%), who were still alive two years after the instructions were written (63%) and had nominated a health care proxy (88.6%). Free texts (62.9%) were richer in content than pre-defined forms. The advance directives were used in three ways: for a purely legal purpose, to focus on medical treatments or actions, or to communicate a message to the family. Three main themes emerged: (1) refusal of medical treatment (100%), in which patients express refusal of life-sustaining care (97.1%). The actual treatments or the moment when they should be limited or stopped were not always mentioned in detail. (2) A desire for effective pain relief to avoid suffering (57.1%) and (3) messages for their family (34.3%), such as funeral arrangements (17.1%) and messages of love or trust (14.3%).
CONCLUSIONS: Patients who write advance directives are not necessarily at the end of their lives. Their content mainly conveys treatment wishes, although patients also use them to pass on personal messages to their close family. This emerging role of advance directives to communicate messages within the family should be valued, even if it is not their original purpose.
Purpose: Inpatient palliative care integrated with transplant care improves patients' quality of life (QOL) and symptom burden during hematopoietic stem-cell transplant (HCT). We assessed patients' mood, post-traumatic stress disorder (PTSD) symptoms, and QOL 6 months post-transplant. Methods: We randomly assigned 160 patients with hematologic malignancies who underwent autologous or allogeneic HCT to inpatient palliative care integrated with transplant care (n = 81) or transplant care alone (n = 79). At baseline and 6 months post-transplant, we assessed mood, PTSD symptoms, and QOL with the Hospital Anxiety and Depression Scale and Patient Health Questionnaire, PTSD checklist, and Functional Assessment of Cancer Therapy-Bone Marrow Transplant. To assess symptom burden during HCT, we used the Edmonton Symptom Assessment Scale. We used analysis of covariance while controlling for baseline values to examine intervention effects and conducted causal mediation analyses to examine whether symptom burden or mood during HCT mediated the effect of the intervention on 6-month outcomes. Results: We enrolled 160 (86%) of 186 potentially eligible patients between August 2014 and January 2016. At 6 months post-transplant, intervention participants reported lower depression symptoms on the Hospital Anxiety and Depression Scale and Patient Health Questionnaire (adjusted mean difference, -1.21 [95% CI, -2.26 to -0.16; P = .024] and -1.63 [95% CI, -3.08 to -0.19; P = .027], respectively) and lower PTSD symptoms (adjusted mean difference, -4.02; 95% CI, -7.18 to -0.86; P = .013), but no difference in QOL or anxiety. Symptom burden and anxiety during HCT hospitalization partially mediated the effect of the intervention on depression and PTSD at 6 months post-transplant.
Conclusion Inpatient palliative care integrated with transplant care leads to improvements in depression and PTSD symptoms at 6 months post-transplant. Reduction in symptom burden and anxiety during HCT partially accounts for the effect of the intervention on these outcomes.
Objectif: Avoir eu une discussion précoce sur les souhaits du malade en fin de vie est associé à une amélioration de la prise en charge palliative des patients atteints de cancer. Pourtant, les professionnels de santé investissent très peu les directives anticipées. L’objectif principal de l’étude était de comprendre ce qui facilite ou limite une discussion autour de la fin de vie lors de la rechute d’une hémopathie maligne agressive, d’après les oncohématologues. L’objectif secondaire était d’en explorer les conséquences sur l’ouverture aux soins palliatifs en hématologie. Méthodologie: Cet article présente les résultats de dix entretiens semi-directifs individuels d’hématologues cliniciens francophones. L’analyse du verbatim a été effectuée selon une méthode de catégorisation par thématiques, issue de la théorie ancrée.
Résultats: Lors de la rechute, la possibilité d’une discussion autour de la fin de vie était limitée par la crainte de la perte de l’alliance thérapeutique. Les hématologues avaient du mal à s’ouvrir à la subjectivité du patient et à se positionner vis-à-vis de son cheminement dans un contexte thérapeutique. L’anticipation d’un pronostic péjoratif n’était pas exploitée en situation d’incertitude. Une communication centrée sur l’espoir était préférée à l’approche de la question de la mort, perçue comme une menace.
Conclusion: La prise en compte de la subjectivité des cliniciens et la complexité de la mise en place de discussions autour de la fin de vie nécessitent de reconsidérer la place et le rôle des directives anticipées, des récits de vie et de l’importance du tiers dans l’articulation précoce entre soins palliatifs et hématologie.