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BACKGROUND: The present study explored the acceptability of psilocybin-assisted group therapy from the perspective of patients with cancer and depression who participated in a clinical trial assessing the safety and efficacy of this novel intervention. METHODS: Guided by the conceptual framework of acceptability, the authors conducted semi-structured interviews with participants of the psilocybin trial. Data were analyzed using template and thematic analyses. RESULTS: Participants' (n = 28) perspectives on the acceptability of the group and simultaneous sessions was generally positive, both in terms of safety and efficacy: first, the groups contributed to increase participants' sense of safety and preparedness as they were engaging in the therapy; and second, the groups fostered a sense of connection and of belonging, which served to enrich and deepen the meaning of participants' experience, ultimately opening a dimension of self-transcendence and compassion. Other subthemes related to factors influencing the acceptability of the group approach included: 1) the importance of the therapeutic framework, 2) the complementary value of individual sessions, 3) disruptive factors related to the group and/or simultaneous setting, and 4) opportunities and challenges related to group size and how to structure interactions. CONCLUSIONS: This study enhances understanding of what promotes acceptability of the psilocybin-assisted therapy group model for the treatment of MDD in cancer patients. PLAIN LANGUAGE SUMMARY: We conducted exit interviews with participants of a phase 2 trial of psilocybin-assisted therapy (PAT) conducted in a community cancer center, to assess the acceptability of a novel psilocybin delivery model combining simultaneous individual therapy and group sessions. Our findings support the acceptability of this intervention and suggest that in addition to being feasible, it might also enhance participants' perceived safety and efficacy compared to uniquely individual or group delivery models of PAT. Our analysis highlights critical factors conditioning acceptability and suggests new ways PAT may be scaled and integrated into cancer care.
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Transtorno Depressivo Maior , Neoplasias , Psicoterapia de Grupo , Humanos , Psilocibina/uso terapêutico , Transtorno Depressivo Maior/tratamento farmacológico , Psicoterapia , Neoplasias/tratamento farmacológico , Neoplasias/induzido quimicamenteRESUMO
BACKGROUND: Depression is common in patients with cancer and is associated with lower treatment adherence and reduced quality of life. Antidepressants and psychotherapy have limited success in improving depression among patients with cancer. This study explored the safety, feasibility, and efficacy of psilocybin-assisted therapy in patients with cancer and major depressive disorder. METHODS: This phase 2, open-label trial enrolled patients with curable and noncurable cancer and major depressive disorder at a single community oncology practice site. A single 25-mg dose of psilocybin was administered simultaneously to cohorts of three to four participants with individual (4.25 hours in 1:1 therapist-to-patient ratio) and group therapeutic support (3.75 hours) before, during, and after psilocybin administration. Outcomes included depression severity, anxiety, pain, demoralization, and disability. RESULTS: Thirty participants completed the study. No psilocybin-related serious adverse events occurred; treatment-related adverse events (e.g., nausea, headache) were generally mild and expected. There were no laboratory or electrocardiogram abnormalities. No suicidality was reported. Efficacy was suggested with a robust reduction in depression severity scores from baseline to posttreatment of 19.1 points (95% CI, 22.3 to -16.0; p < .0001) by week 8. Eighty percent of participants demonstrated a sustained response to psilocybin treatment; 50% showed full remission of depressive symptoms at week 1, which was sustained for 8 weeks. CONCLUSIONS: Psilocybin-assisted therapy in group cohort administration was safe and feasible in patients with cancer and depression. Efficacy was suggested based on clinically meaningful reductions in depressive symptoms. The novel, group-oriented format, compact delivery time, community cancer center setting, and one-to-one therapist-to-patient ratio could also add to therapeutic gains and efficiency of administration. TRIAL REGISTRATION: NCT04593563. PLAIN LANGUAGE SUMMARY: Depression is common in patients with cancer and associated with lower treatment adherence, reduced quality of life, and limited response to antidepressants and psychotherapy. We conducted a phase 2 trial to study a single dose of psilocybin administered in a group therapy setting with one-to-one therapist-to-participant psychological support to patients with curable and noncurable cancer and major depressive disorder. Findings of the study showed safety (no treatment-related serious adverse events or suicidality) with psilocybin and suggested efficacy, with a significant reduction in depression severity scores from baseline to posttreatment. Further investigation is warranted.
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Transtorno Depressivo Maior , Neoplasias , Psicoterapia de Grupo , Humanos , Antidepressivos/efeitos adversos , Transtorno Depressivo Maior/tratamento farmacológico , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Psilocibina/efeitos adversos , Qualidade de VidaRESUMO
BACKGROUND: Psychedelic-assisted therapies (PAT) are emerging as a promising treatment for psycho-existential distress in patients with serious illness. A recent qualitative analysis of perspectives of 17 experts in serious illness care and/or PAT research identified divergent views on the therapeutic potential and safety of PAT in patients with serious illness. This paper further analyzes the factors that may influence these views. OBJECTIVES: To identify factors underlying the attitudes of experts in serious illness care and/or PAT toward PAT and its potential role in serious illness care. METHODS: Semi-structured interviews of 17 experts in serious illness care and/or PAT from the United States and Canada were analyzed to identify factors cited as influencing their views on PAT. RESULTS: Five factors were identified as influencing experts' attitudes toward PAT: perception of unmet need, knowledge of empirical studies of PAT, personal experience with psychedelics, professional background, and age/generation. In addition, an integrative theme emerged from the analysis, namely PAT's disruptive potential at 4 levels relevant to serious illness care: patient's experience of self, illness, and death; relationships with loved ones and health-care providers; existing clinical models of serious illness care; and societal attitudes toward death. Whether this disruptive potential was viewed as a therapeutic opportunity, or an undue risk, was central in influencing experts' level of support. Experts' perception of this disruptive potential was directly influenced by the 5 identified factors. SIGNIFICANCE OF RESULTS: Points of disruption potentially invoked by PAT in serious illness care highlight important practical and philosophical considerations when working to integrate PAT into serious illness care delivery in a safe and effective way.
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BACKGROUND: Early integration of palliative care for patients with metastatic lung cancer improves their quality of life and survival and reduces the aggressiveness of care near the end of life. This study examined the association between the timing of palliative care needs reporting and the aggressiveness of end-of-life care. METHODS: This retrospective cohort study used the French National Hospital Registry to identify all hospitalized adults (≥20 years old) who died of metastatic lung cancer in France between 2010 and 2013. It compared the use of care and treatments near the end of life as a function of the timing of the first reporting of palliative care needs. The use of chemotherapy and the use of invasive ventilation were defined as primary outcomes. Propensity score weighting was used to control for potential confounders. RESULTS: Among a total of 64,950 deceased patients with metastatic lung cancer, the reporting of palliative care needs was characterized as timely (from 91 to 31 days before death) for 26.3%, late (from 30 to 8 days before death) for 31.5%, and very late (from 7 to 0 days before death) for 12.8%. Palliative care needs were not reported for 19,106 patients (29.4%). Patients with timely reporting of palliative care needs had the earliest and most progressive decrease in the use of anticancer therapy. The use of invasive ventilation also increased with a delay in palliative care needs reporting. CONCLUSIONS: There is a clear association between the timing of palliative care needs reporting and the aggressiveness of care near the end of life. Cancer 2018;124:3044-51. © 2018 American Cancer Society.
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Neoplasias Pulmonares/terapia , Cuidados Paliativos/organização & administração , Qualidade de Vida , Encaminhamento e Consulta/estatística & dados numéricos , Assistência Terminal/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , França , Humanos , Neoplasias Pulmonares/mortalidade , Neoplasias Pulmonares/patologia , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Sistema de Registros/estatística & dados numéricos , Estudos Retrospectivos , Assistência Terminal/estatística & dados numéricos , Fatores de Tempo , Suspensão de Tratamento/estatística & dados numéricosRESUMO
Because the indication of allograft (allogeneic stem cell transplantation [alloSCT]) for multiple myeloma (MM) has widened in recent years, thanks to the development of reduced-intensity conditionings (RIC), it is still unclear if myeloablative conditioning (MAC) remains appropriate. This study compares retrospectively outcomes of patients undergoing either RIC or MAC regimens for MM. Based on the SFGM-TC registry, we included 446 MM patients receiving alloSCT between 1999 and 2009 for whom a minimal data set was available. Median follow-up for the entire cohort was 33.6 months (range, 0 to 164.5). RIC and MAC populations were different regarding age (53.5 versus 47.1 years, respectively), number of prior autologous (auto)SCTs (93.2% versus 79.6% had at least 2 autoSCTs), and stem cell source (90.2% versus 61.2% received peripheral blood). For RIC and MAC populations the nonrelapse mortality at 2 years was 24.6% and 22.4%, respectively, progression-free survival 35.5% and 51.1%, and overall survival 59.5% and 66.7% (not significant). These outcomes were not affected by conditioning intensity either on univariate or multivariate analysis. Despite some limitations in the study design, these results indicate that MAC should remain a valuable option in alloSCT for MM, especially for young and less-treated patient with no comorbidity. The constant progress in induction treatments of MM and supportive care after alloSCT could improve these results in the near future.
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Transplante de Células-Tronco Hematopoéticas/métodos , Mieloma Múltiplo/terapia , Condicionamento Pré-Transplante/métodos , Adulto , Idoso , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mieloma Múltiplo/patologia , Estudos Retrospectivos , Resultado do TratamentoRESUMO
BACKGROUND: Little is known about what is at stake at a subjective level for the oncologists and the advanced cancer patients when they face the question whether to continue, limit or stop specific therapies. We studied (1) the frequency of such questioning, and (2) subjective determinants of the decision-making process from the physicians' and the patients' perspectives. METHODS: (1) All hospitalized patients were screened during 1 week in oncology and/or hematology units of five institutions. We included those with advanced cancer for whom a questioning about the pursuit, the limitation or the withholding of specific therapies (QST) was raised. (2) Qualitative design was based on in-depth interviews. RESULTS: In conventional units, 12.8 % of cancer patients (26 out of 202) were concerned by a QST during the study period. Interviews were conducted with all physicians and 21 advanced cancer patients. The timing of this questioning occurred most frequently as physicians estimated life expectancy between 15 days and 3 months. Faced with the most frequent dilemma (uncertain risk-benefit balance), physicians showed different ways of involving patients. The first two were called the "no choice" models: 1) trying to resolve the dilemma via a technical answer or a "wait-and-see" posture, instead of involving the patients in the questioning and the thinking; and 2), giving a "last minute" choice to the patients, leaving to them the responsibility of the decision. In a third model, they engaged early in shared reflections and dialogue about uncertainties and limits with patients, proxies and care teams. These schematic trends influenced patients' attitudes towards uncertainty and limits, as they were influenced by these ones. Individual and systemic barriers to a shared questioning were pointed out by physicians and patients. CONCLUSIONS: This study indicate to what extent these difficult decisions are related to physicians' and patients' respective and mutually influenced abilities to deal with and share about uncertainties and limits, throughout the disease trajectory. These insights may help physicians, patients and policy makers to enrich their understanding of underestimated and sensitive key issues of the decision-making process.
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Comportamento de Escolha , Tomada de Decisões , Neoplasias/terapia , Assistência Terminal/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Relações Médico-Paciente/ética , Estudos Prospectivos , Pesquisa Qualitativa , Assistência Terminal/ética , Assistência Terminal/psicologiaRESUMO
BACKGROUND: Growing clinical interest in psychedelic-assisted therapies has led to a second wave of research involving psilocybin, lysergic acid diethylamide (LSD), 3,4-methylenedioxymethamphetamine (MDMA) and other substances. Data suggests that these compounds have the potential to treat mental health conditions that are especially prevalent in older adults such as depression, anxiety, existential distress, and posttraumatic stress disorder. AIMS: The goal of this study was to quantify the prevalence of older adults enrolled in psychedelic clinical trials and explore safety data in this population. METHODS: A systematic review was conducted following the 2020 PRISMA guidelines. Search criteria included all trials published in English using psychedelic substances to treat psychiatric conditions, including addiction as well as existential distress related to serious illness. Articles were identified from literature searches on PubMed, EBSCO, and EMBASE. RESULTS: 4376 manuscripts were identified, of which 505 qualified for further review, with 36 eventually meeting eligibility criteria. Of the 1400 patients enrolled in the 36 studies, only 19 were identified as 65 or older, representing less than 1.4% of all trial participants. For 10 of these 19 older adults, detailed safety data was obtained. No serious adverse events (AEs) occurred in any older adults and only transient mild-to-moderate AEs related to anxiety, gastrointestinal upset, and hypertension were reported during the psychedelic dosing sessions. CONCLUSIONS: While existing data in older adults is limited, it suggests that psychedelic-assisted psychotherapy can be safe and well tolerated in older adults. Therefore, psychedelic-assisted psychotherapy should be more rigorously investigated for the treatment of psychiatric conditions in this population.
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Alucinógenos , Humanos , Alucinógenos/administração & dosagem , Alucinógenos/efeitos adversos , Idoso , Transtornos Mentais/tratamento farmacológico , Ensaios Clínicos como AssuntoRESUMO
Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.
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Psychological distress at the end of life is a common experience that lacks effective treatments. This is in part due to the multidimensional nature of psychological distress at the end of life, encompassing an interplay between psychosocial and existential distress as well as physical symptom burden. Research shows that psychedelic-assisted therapy is an effective treatment of end of life distress. Ketamine and cannabis may help with quick and effective treatment of symptom burden at the end of life. Although these novel interventions show promise, further data is needed, particularly in elderly populations.
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Alucinógenos , Medicina Integrativa , Ketamina , Idoso , Humanos , Cuidados Paliativos , MorteRESUMO
Background: Psychedelic-assisted therapy (PAT) has re-emerged as a promising intervention for addressing mental health conditions and existential concerns. Despite growing enthusiasm, PAT may be difficult to integrate into mainstream health systems. The rich sacramental traditions of psychedelics, their centering of the human experience, proposed substrates of action, context-dependent outcomes, and highly relational method of therapy all challenge dominant reductionistic approaches of the biomedical model. Hospice and palliative care are well established as holistic evidence-based standards of care, yet they began as a radical grassroots movement. Hospice and palliative care models may offer unique insights to support the growing field of PAT. Purpose: The intention of this commentary is to articulate the deep synergies between hospice and palliative care and PAT, with the intention of fostering interdisciplinary dialogue that may aid in implementation of human-centered high-quality PAT. Conclusions: Various aspects of hospice and palliative care models were identified and explored, which may support the implementation of human-centered high-quality PAT at scale. These include a focus on truly interdisciplinary care, applying a holistic lens to health and illness, bearing witness to suffering and healing, customized care, centering human relationships, decentralized models of care, generalist/specialist competencies, fostering spirituality, organizing as a social moment around shared goals, and growth from grassroots community organizations to mature care systems. Although hospice and palliative care can offer practical lessons for scaling human-centered experiential therapies, PAT, with its radical centering of meaning-making and relationship in the healing process, may also mutually innovate the fields of hospice and palliative care.
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Patients with amyotrophic lateral sclerosis (ALS) are impacted both physically and psychiatrically during their illness. Emotional distress (ie, anxiety, depression, stress) is common in patients diagnosed with ALS, as prognosis is poor and there are very few effective treatments. The progression of symptoms is unpredictable, and all cases are terminal. Neuropsychiatric symptoms are also increasingly recognized as part of ALS symptomatology. There are currently no empirically supported interventions or best practices for adjustment to ALS. This case presents both the psychological and pharmacologic aspects of caring for a patient with ALS. Psychotherapy utilized a cognitive behavioral therapy-informed approach, and pharmacotherapy was tailored to the specific needs of the patient. We explore how these approaches impacted our patient, as well as how ALS-specific challenges presented throughout the course of treatment.
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Esclerose Lateral Amiotrófica , Terapia Cognitivo-Comportamental , Angústia Psicológica , Idoso , Humanos , Masculino , Esclerose Lateral Amiotrófica/complicações , Esclerose Lateral Amiotrófica/diagnóstico , Esclerose Lateral Amiotrófica/terapia , PsicoterapiaRESUMO
Despite resurgent interest in psychedelic-assisted therapy, our insights into psychiatrists' knowledge and opinions about medicinal psychedelic applications are surprisingly narrow. Therefore, we anonymously surveyed psychiatrists attending psychedelic didactic presentations at two national meetings about these issues using a 26-item questionnaire. Response rate was 40.20% (106/264). Respondents were 41.73 ± 13.31 years old (range: 24-80) and 64.42% were male. They largely believed psychedelics show treatment promise and strongly supported federal funding for medicinal psychedelic research. The most common concerns were the lack of trained psychedelic-assisted therapy providers, the logistics of psychedelic-assisted therapy delivery, the administration of psychedelics for patients with contraindications, and diversion. The most desired psychedelic-related educational topics were potential benefits of psychedelic-assisted therapy, how to conduct psychedelic-assisted therapy, psychedelic pharmacology, and psychedelic side effects. Factors associated with increased belief in psychedelics' treatment potential included working primarily in research, scoring higher on a psychedelic knowledge test, and reporting less concern about psychedelics' addictive potential. Working primarily in research and consult-liaison psychiatry fellowship training were positively associated with support for medicinal psychedelic legalization, while increased concerns about addictive potential and attending psychiatrist status were negatively associated. Support for legalization of non-medicinal psychedelic use was negatively associated with age and positively associated with support for legalization of medicinal psychedelic use.
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Alucinógenos , Psiquiatria , Adulto , Feminino , Alucinógenos/efeitos adversos , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
CONTEXT: People affected by serious illness usually experience suffering in its various dimensions, not only in the physical but also in the psychosocial and spiritual aspects. The interest in psychedelic-assisted therapies as a potential new therapeutic modality has increased since evidence suggests a significant impact of their use on the outcomes of patients with serious illness. OBJECTIVES: To systematically review the available evidence on the effects of psychedelic-assisted therapies for symptom control in patients diagnosed with serious illness. METHODS: The protocol of this systematic review has been prepared according to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols guidelines. This review included randomized and non-randomized controlled trials published in peer-reviewed scientific journals. A comprehensive search for studies was carried out in the main scientific databases, including Web of Science, Scopus, Cochrane Library, PsycINFO, PubMed, CINAHL, and EMBASE. There were no limitations regarding the year or language of publication. RESULTS: The sample was composed of 20 studies. The results suggest positive effects of psychedelic-assisted therapies for symptom control in patients diagnosed with serious illness, with considerable safety of use. Most studies have been conducted with lysergic acid diethylamide, psilocybin, and N,N-dipropyltryptamine in cancer patients. The adverse effects reported were of physical and/or psychological nature and of mild to moderate intensity, transient, and self-resolutive. CONCLUSION: The evaluated evidence suggests positive effects of psychedelic-assisted therapies for symptom control in patients diagnosed with serious illness, especially regarding symptoms of psychological and spiritual nature.
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Alucinógenos , Ansiedade , Alucinógenos/uso terapêutico , Humanos , Dietilamida do Ácido Lisérgico/uso terapêutico , Psilocibina/uso terapêuticoRESUMO
Psychedelic-assisted therapy (PAT) is a burgeoning treatment with growing interest across a variety of settings and disciplines. Empirical evidence supports PAT as a novel therapeutic approach that provides safe and effective treatment for people suffering from a variety of diagnoses, including treatment-resistant depression, substance use disorder, and post-traumatic stress disorder. Within the palliative care (PC) field, one-time PAT dosing may lead to sustained reductions in anxiety, depression, and demoralization-symptoms that diminish the quality of life in both seriously ill patients and those at end of life. Despite a well-noted psychedelic renaissance in scholarship and a renewed public interest in the utilization of these medicines, serious illness-specific content to guide PAT applications in hospice and PC clinical settings has been limited. This article offers 10 evidence-informed tips for PC clinicians synthesized through consultation with interdisciplinary and international leading experts in the field with aims to: (1) familiarize PC clinicians and teams with PAT; (2) identify the unique challenges pertaining to this intervention given the current legalities and logistical barriers; (3) discuss therapeutic competencies and considerations for current and future PAT use in PC; and (4) highlight critical approaches to optimize the safety and potential benefits of PAT among patients with serious illness and their caregivers.
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Alucinógenos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Ansiedade , Humanos , Cuidados Paliativos , Qualidade de VidaRESUMO
Background: With support from the Radcliffe Institute for Advanced Study at Harvard University, we convened researchers representing palliative care, psychosocial oncology, spiritual care, oncology, and psychedelic-assisted therapies. We aimed to define priorities and envision an agenda for future research on psychedelic-assisted therapies in patients with serious illness. Over two days in January 2020, participants engaged in an iterative series of reflective exercises that elicited their attitude and perspectives on scientific opportunities for this research. Objectives: The aim of the study is to identify themes that shape priorities and an agenda for research on psychedelic-assisted therapy for those affected by serious illness. Methods: We collected data through preconference interviews, audio recordings, flip charts, and sticky notes. We applied thematic qualitative analysis to elucidate key themes. Results: We identified seven key opportunities to advance the field of psychedelic-assisted therapies in serious illness care. Four opportunities were related to the science and design of psychedelic-assisted therapies: clarifying indications; developing and refining therapeutic protocols; investigating the impact of set and setting on therapeutic outcomes; and understanding the mechanisms of action. The other three pertained to institutional and societal drivers to support optimal and responsible research: education and certification for therapists; regulations and funding; and diversity and inclusion. Additionally, participants suggested epistemological limitations of the medical model to understand the potential value and therapeutic use of psychedelics. Conclusions: Medicine and society are witnessing a resurgence of interest in the effects and applications of psychedelic-assisted therapies in a wide range of settings. This article suggests key opportunities for research in psychedelic-assisted therapies for those affected by serious illness.
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Alucinógenos , Atitude , Alucinógenos/uso terapêutico , Humanos , Cuidados Paliativos , Psico-OncologiaRESUMO
Background: Recent and preprohibition studies show that patients with serious illness might benefit from psychedelic-assisted therapies for a range of symptoms, physical, psychosocial, and existential. Objective: To explore the potential roles and research priorities of these therapies in patients with serious illness. Design, Setting, and Participants: Qualitative study based on semistructured interviews with 17 experts in serious illness care and/or psychedelic research from the United States and Canada. Measurements: The interview guide elicited participants' perspectives on (1) the potential roles of psychedelic-assisted therapies in this setting, (2) research priorities relevant to this population, and (3) the potential for integrating psychedelic-assisted therapies into existing delivery models of serious illness care. We used thematic analysis until thematic saturation. Results: Domain I: Participants had polar views on the therapeutic potential of psychedelic-assisted therapies, ranging from strong beliefs in their medical utility to reluctance about their use in this patient population. They shared concerns related to the risks of adverse effects, such as delirium or worsening of psychological distress. Domain II: Research priorities primarily concerned patients with clinically diagnosed psychosocial distress, such as depression, anxiety, or demoralization. Participants also articulated potential roles extending beyond traditional medical diagnosis. Domain III: Participants emphasized essential safety and efficacy guidelines relevant to the integration of these therapies into existing models of care. Conclusion: This qualitative study highlights issues and priorities for research on psychedelic-assisted therapies in patients with serious illness and proposes a conceptual framework for integrating these therapies into existing delivery models of serious illness care.
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Alucinógenos , Ansiedade , Canadá , Existencialismo , Alucinógenos/uso terapêutico , Humanos , Pesquisa Qualitativa , Estados UnidosRESUMO
OBJECTIVE: To investigate patterns of care during the last months of life of hospitalised patients who died from different haematological malignancies. METHODS: Nationwide register-based study, including all hospitalised adults ≥20 years who died from haematological malignancies in France in 2010-2013. Outcomes included use of invasive cancer treatments and referral to palliative care. Percentages are adjusted for sex and age using direct standardisation. RESULTS: Of 46 629 inpatients who died with haematological malignancies, 24.5% received chemotherapy during the last month before death, 48.5% received blood transfusion, 12.3% were under invasive ventilation and 18.1% died in intensive care units. We found important variations between haematological malignancies. The use of chemotherapy during the last month of life varied from 8.6% among patients with chronic myeloid leukaemia up to 30.1% among those with non-Hodgkin's lymphoma (P<0.001). Invasive ventilation was used in 10.2% of patients with acute leukaemia but in 19.0% of patients with Hodgkin's lymphoma (P<0.001). Palliative status was reported 30 days before death in only 14.8% of patients, and at time of death in 46.9% of cases. Overall, 5.5% of haematology patients died in palliative care units. CONCLUSION: A high proportion of patients who died from haematological malignancies receive specific treatments near the end of life. There is a need for a better and earlier integration of the palliative care approach in the standard practice of haematology. However, substantial variation according to the type of haematological malignancy suggests that the patients should not be considered as one homogeneous group. Implementation of palliative care should account for differences across haematological malignancies.
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Neoplasias Hematológicas/terapia , Hospitalização/estatística & dados numéricos , Hospitais/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Antineoplásicos/uso terapêutico , Transfusão de Sangue/estatística & dados numéricos , Feminino , França , Humanos , Unidades de Terapia Intensiva/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Sistema de Registros , Respiração Artificial/estatística & dados numéricos , Assistência Terminal/métodosRESUMO
The question of withdrawing artificial nutrition and hydration from people in a permanent vegetative state sparks considerable ethical and legal debate. Therefore, understanding the elements that influence such a decision is crucial. However, exploring perceptions of artificial nutrition and hydration is methodologically challenging for several reasons. First, because of the emotional state of the professionals and family members, who are facing an extremely distressing situation; second, because this question mirrors representations linked to a deep-rooted fear of dying of hunger and thirst; and third, because of taboos surrounding death. We sought to determine the best method to explore such complex situations in depth. This article aims to assess the relevance of the photo-elicitation interview method to analyze the perceptions and attitudes of health professionals and families of people in a permanent vegetative state regarding artificial nutrition and hydration. The photo-elicitation interview method consists in inserting one or more photographs into a research interview. An original set of 60 photos was built using Google Images and participants were asked to choose photos (10 maximum) and talk about them. The situations of 32 patients were explored in 23 dedicated centers for people in permanent vegetative state across France. In total, 138 interviews were conducted with health professionals and family members. We found that the photo-elicitation interview method 1) was well accepted by the participants and allowed them to express their emotions constructively, 2) fostered narration, reflexivity and introspection, 3) offered a sufficient "unusual angle" to allow participants to go beyond stereotypes and habits of thinking, and 4) can be replicated in other research areas. The use of visual methods currently constitutes an expanding area of research and this study stressed that this is of special interest to enhance research among populations facing end-of-life and ethical issues.