Ce numéro de la revue est consacré à la philosophie de terrain définie comme rapport entre réalité et pensée et comme spécificité de l’activité philosophique. Sont abordés la revendication contemporaine d’une philosophie impliquée, une philosophie de terrain en lien avec la pensée canguilhémienne des normes individuelles, l’accompagnement de la fin de vie ou encore la recherche en éthique clinique.
BACKGROUND: Evaluation of palliative care services is crucial in order to ensure high quality care and to plan future services in light of growing demand. There is also an acknowledgement of the need to better understand patient experiences as part of the paradigm shift from paternalistic professional and passive patient to a more collaborative partnership. However, while clinical decision-making is well-developed, the science of the delivery of care is relatively novel for most clinicians. We therefore introduce the Trajectory Touchpoint Technique (TTT), a systematic methodology designed using service delivery models and theories, for capturing the voices of palliative care service users.
METHODS: We used design science research as our overarching methodology to build our Trajectory Touchpoint Technique. We also incorporated a range of kernel theories and service design models from the wider social sciences. We developed and tested our Trajectory Touchpoint Technique with palliative care patients and their families (n = 239) in collaboration with different hospices and hospital-based palliative care providers (n = 8).
RESULTS: The Trajectory Touchpoint Technique is user-friendly, enables systematic data collection and analysis, and incorporates all tangible and intangible dimensions of palliative care important to the service user. These dimensions often go beyond clinical care to encompass wider aspects that are important to the people who use the service. Our collaborating organisations have already begun to make changes to their service delivery based on our results.
CONCLUSIONS: The Trajectory Touchpoint Technique overcomes several limitations of other palliative care evaluation methods, while being more comprehensive. The new technique incorporates physical, psychosocial, and spiritual aspects of palliative care, and is user-friendly for inpatients, outpatients, families, and the bereaved. The new technique has been tested with people who have a range of illnesses, in a variety of locations, among people with learning disabilities and low levels of literacy, and with children as well as adults. The Trajectory Touchpoint Technique has already uncovered many previously unrecognised opportunities for service improvement, demonstrating its ability to shape palliative care services to better meet the needs of patients and their families.
BACKGROUND: Research with persons with dementia is important to better understand the causes of dementia and to develop more effective diagnostics, therapies, and preventive measures. Advance Research Directives (ARDs) have been suggested as a possible solution to include persons with dementia in research in an ethically sound way. Little is known about how people, especially those affected by cognitive impairment, understand and regard the use of ARDs, as empirical studies are mainly conducted with healthy, non-cognitively impaired, participants.
METHODS: This qualitative study, a sub-study of a larger study on the evaluation of ARDs in the context of dementia research in Germany, consists of semi-structured in-depth interviews with 24 persons with cognitive impairment.
RESULTS: Our results indicate that most participants consider ARDs a valuable tool for allowing them to make their own decisions. Many would prefer to draft an ARD when they are still healthy or soon after the diagnosis of cognitive impairment. Participants suggested that the completion of ARDs can be advanced with the provision of practical support and increased dissemination of information on ARDs in society.
CONCLUSION: Persons with subjective or mild cognitive impairment (SCI/MCI) suggested several motivating factors and concerns for completing an ARD. Clinicians need to be trained to accommodate patients' needs for sufficient and adequate information. Furthermore, a standardised, partly pre-formulated template could be helpful for drafting an ARD. As such tested templates are currently not yet available, this addresses the urgent need for more translational and implementation research for the use of ARDs.
Conducting palliative care research can be personally and professionally challenging. While limitations in funding and training opportunities are well-described, a less recognized barrier to successful palliative care research is creating a sustainable and resilient team. In this special report, we describe the experience and lessons-learned in a single palliative care research lab. In the first few years of the program, 75% of staff quit, citing burnout and the emotional tolls of their work. To address our sustainability, we translated resilience theory to practice. First, we identified and operationalized shared mission and values. Next, we conducted a resilience resource needs assessment for both individual team-members and the larger team as a whole, and created a workshop based curriculum to address unmet personal and professional support needs. Finally, we changed our leadership approach to foster psychological safety and shared mission. Since then, no team-member has left and the program has thrived. As the demand for rigorous palliative care research grows, we hope this report will provide perspective and ideas to other established and emerging palliative care research programs.
Mixed methods research has been increasingly recognized as a useful approach for describing and explaining complex issues in palliative care and end-of-life research. However, little is known about the use of this methodology in the field and the ways in which mixed methods studies have been reported. The purpose of this methodological review was to examine the characteristics, methodological features and reporting quality of mixed methods articles published in palliative care research. The authors screened all articles published in eight journals specialized in palliative care between January 2014 and April 2019. Those that reported a mixed methods study (n = 159) were included. The Good Reporting of a Mixed Methods Study (GRAMMS) criteria were used to assess reporting quality. Findings showed that 57.9% of the identified studies used a convergent design and 82.4% mentioned complementarity as their main purpose for using a mixed methods approach. The reporting quality of the articles generally showed a need for improvement as authors usually did not describe the type of mixed methods design used and provided little detail on the integration of quantitative and qualitative methods. Based on the findings, recommendations are made to improve the quality of reporting of mixed methods articles in palliative care.
End-of-life (EOL) HIV cure-related research provides a novel approach to studying HIV reservoirs. The Last Gift is a rapid autopsy research study at the University of California San Diego that enrolls terminally ill people living with HIV (PLWHIV) with a desire to contribute to HIV cure-related research. We conducted in-depth baseline and follow-up interviews with Last Gift study participants. We analyzed interview data applying conventional content analysis. Since summer 2017, 13 participants have been enrolled (n = 11 males and 2 females; aged 45–89 years) and 8 participants interviewed. Terminal illnesses included cancers, heart diseases, and neurodegenerative illnesses. Our analysis revealed five key themes: (1) The Last Gift study has tremendous meaning for participants at the end of their life. (2) HIV-specific altruism was a primary motivator to join the Last Gift study, nested within the context of community, scientific advancement, and moral obligation. (3) Participants did not expect physical benefits yet they perceived emotional/psychological, financial, and societal/scientific benefits. (4) There were minimal participant-perceived risks and concerns. (5) Last Gift participants expressed immense gratitude toward study staff. The Last Gift study provides a framework for ethical HIV cure-related research at EOL and highlighted participants' perspectives, motivations, and experiences. Knowing how PLWHIV understand and experience such studies will remain critical to designing ethical, fully informed HIV cure research protocols that are acceptable to PLWHIV.
A growing number of people living with HIV/AIDS are participating in HIV cure-related research at the end of life (EOL). Due to the novelty of EOL HIV cure-related research, there is a need to understand how their next-of-kin (NOK) perceive such research. We conducted in-depth interviews with NOK of the Last Gift study participants at the University of California, San Diego. The Last Gift study occurs in the context of the EOL and involves a full body donation. NOK completed two interviews: (1) shortly after the participants' enrollment in the study and (2) following death. We applied thematic analysis to analyze qualitative data. NOK included seven individuals (five males and two females), including two spouses, one ex-partner, one sister, a grandmother/grandfather, and a close friend. Thematic analysis revealed five key themes: (1) NOK viewed the Last Gift program in a positive light and had an accurate overall understanding of the study; (2) NOK identified factors that motivated participants to donate their body to science; (3) NOK identified benefits of the Last Gift program for both the donors and themselves; (4) NOK did not perceive any physical risks or decisional regrets of study but wanted to minimize psychosocial impacts and ensure the dignity of participants at all times; and (5) NOK noted elements that remained essential to the successful implementation of EOL HIV cure-related research, such as early involvement and clear communication. Our study uniquely contributes to increased understanding and knowledge of what is important from the point of view of supportive NOK to ensure successful implementation of EOL HIV cure-related research. More research will be needed to understand perspectives of less supportive NOK.
Overcoming barriers in hospice and palliative care research is a multifaceted challenge for researchers conducting intervention studies. The complexity and variations of these barriers are abundant and serious in nature and can threaten the success of intervention research for the hospice and palliative care patient population. This article explores how challenges and barriers to intervention research can be mitigated by nurses caring for patients in hospice and palliative care settings.
Background: Little is known about strategies for enrolling patients in home-based palliative care (HBPC) programs, despite the need to conduct effectiveness studies of this emerging industry.
Purpose: We used medical claims data from Accountable Care Organizations in California to identify patients for a randomized controlled trial of HBPC. We report outcomes from this strategy and the implications for future research.
Results: Claims data identified 1,357 patients. Research assistants could not reach 986 patients (72.7%), usually because the phone calls went unanswered (38.5%) and many patients’ phone numbers were missing or incorrect (16.3%). Of 371 patients reached, 163 opted out. Of 208 patients screened, 177 were ineligible for the trial. Just 10 patients were enrolled.
Recommendations: Our findings suggest that medical claims data may not be useful for engaging patients potentially eligible for palliative care research trials. We recommend that alternative identification and recruitment strategies be considered.
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally mandated option for children and their families, no review of the science has been conducted. The purpose of this study was to systematically collect the evidence on concurrent hospice care, critically appraise the evidence, and identify areas for future nursing research. Of the 186 articles identified for review, 14 met the inclusion and exclusion criteria. Studies in this review described concurrent hospice care from a variety of perspectives: policy, legal, and ethics. However, only 1 article evaluated the impact of concurrent hospice care on outcomes, whereas several studies explained clinical and state-level implementation. There is a need for further studies that move beyond conceptualization and generate baseline and outcomes data. Understanding the effectiveness of concurrent hospice care might provide important information for future nursing research. The approaches used to disseminate and implement concurrent hospice care at state, provider, and family levels should be explored.
Objective: this metaresearch of the clinicaltrials.gov database aims to evaluate how clinical research on palliative care is conducted within the setting of advanced cancer.
Methods: clinicaltrials.gov was searched to identify registered studies recruiting patients with cancer, and investigating issues relevant to palliative care. The European Organisation for Research and Treatment of Cancer QLQ-C15-PAL (Quality of Life in palliative cancer care patients) questionnaire was taken into account to define the research domains of interest. Studies investigating cancer-directed therapy, management of cancer treatment-related adverse events and diagnostic tests were excluded. Publication status was crosschecked using PubMed.
Results: Of 3950 identified studies, 514 were included. The most frequent reason for exclusion was cancer-directed therapy (2491). In 2007–2012, 161 studies were registered versus 245 in 2013–2018. Included studies were interventional (84%) or observational (16%). Most studies were monocentric (60%), sponsored by academia (79%), and conducted in North America (57%) or Europe (25%). Seventy-nine per cent of studies evaluated a heterogeneous population (>1 tumour type). Interventional studies most frequently investigated systemic drugs (34%), behavioural interventions (29%) and procedures for pain (24%). Pain, quality of life and physical function were the most frequently studied research domains (188, 95 and 52 studies, respectively). The most applied primary outcome measures were efficacy/symptom control (61%), quality of life (14%) and feasibility (12%). Only 16% of the closed studies had published results in PubMed.
Conclusions: Our study describes the heterogeneous landscape of studies conducted to address the issues of patients with advanced cancer in palliative care. Albeit the observed increase in the number of studies over the last decade, the generalisation of the results brought by the existing trials is limited due to methodological issues and lack of reporting. A greater effort is needed to improve clinical research that supports evidence-based palliative cancer care.
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.
Background: Interviews are a common method of data collection in palliative care research because they facilitate the gathering of rich, experiential data that are important for theory and practice. What is less clear is the extent to which those interviewed are representative of the larger group.
Objective: The aim of this study was to determine if family caregivers who volunteer to be interviewed were similar or different to those who do not.
Design: This study used data from the Caregiving and Bereavement study, a prospective, longitudinal mixed-methods study of family caregivers' general health, quality of life, and grief.
Setting/Subjects: The 16 caregivers who volunteered to be interviewed were compared to the 20 who did not.
Measurements: Comparisons were made in terms of the caregivers' demographic characteristics as well as measures of their quality of life, general health, general grief, and caregiver prolonged grief (i.e., before death).
Results: Compared to caregivers who did not volunteer for an interview, those who volunteered were significantly older and reported less caregiver prolonged grief. Logistic regression showed that for each 1-unit increase in the caregiver prolonged grief score, individuals were 13% less likely to agree to an interview.
Conclusions: Research findings based upon family caregivers who volunteer for research interviews might not provide a full picture of their experiences and needs. Researchers are encouraged to consider strategies that sample broadly and promote the participation of the full range of family caregivers in research to address the neglected areas of pre- and postdeath bereavement care.
Les étudiants infirmiers rédigent généralement des mémoires de fin d’études (MFE) à partir de situations vécues lors des stages. C’est une occasion pour nombre d’entre eux de développer des concepts dans le domaine des soins palliatifs. La notion de soins palliatifs ne recouvre pas seulement les unités spécialisées. Elle permet de considérer de multiple aspect de la prise en charge des patients (enfants, adolescents, adultes, personnes âgées, en situation de handicap…) ou tout simplement de l’accompagnement jusqu’à la mort, avec la réalité médicale et sociale que cela comporte (douleurs, émotions, relations avec les aidants…). La recherche documentaire est paramédicale et complexe. Elle suppose une interaction ancrée dans les problématiques informationnelles. Afin de contribuer au raisonnement des apprenants, les documentalistes participent à l’élaboration d’une logique méthodologique pour apporter des éléments constructifs des soins palliatifs dans les MFE. Des concepts incontournables peuvent être utilisés pour créer du sens entre la situation d’appel, la "question de départ", le cadre de références théoriques et l’enquête de terrain.
La recherche documentaire est souvent jugée complexe et chronophage par les professionnels de santé. Cette démarche intellectuelle nécessite méthode et savoir-faire que nous nous proposons de transmettre dans cet article. Ainsi, nous montrerons pourquoi la recherche documentaire est devenue une stratégie indispensable pour trouver les documents recherchés. Nous décrirons ensuite les étapes d’une recherche documentaire et nous donnerons quelques clés pour effectuer ce travail.
Face à la masse de documents disponibles, l’utilisateur peut vite se sentir perdu lorsqu’il veut trouver de l’information pertinente. Malgré des moteurs de recherche de plus en plus performants, il est nécessaire de recourir à des outils spécialisés comme les thésaurus afin de gagner en temps et en pertinence. Nous présentons dans cet article comment sont construits les thésaurus, quand et comment les utiliser pour rendre une recherche documentaire plus efficace.
À l’heure où la médecine palliative tente de développer une recherche de qualité pour démontrer qu’elle possède un corpus rationnel spécifique (et donc documenté et argumenté), il nous a semblé utile de proposer à la communauté des lecteurs de la revue un point sur la facçon de se documenter, d’explorer la littérature. Ainsi une synthèse nous est proposée par Caroline Tête, que beaucoup d’entre nous connaisse pour avoir été en contact avec elle. Synthèse au sein de laquelle elle redéfinit, avec modestie mais grande précision ce qu’est le rôle de la ou du documentaliste. Le documentaliste n’est pas une personne enfouie sous des milliers d’archives poussiéreuses mais, bien au contraire, la personne particulièrement au point des techniques, outils et méthodes de recherche précises de textes ou autres formes de document disponible.
Le dossier contient les articles suivants : documentation, diffusion et recherche : des objectifs pour la revue ; les documentalistes comme partenaire dans la prise en charge des patients en fin de vie ; documentation et soins palliatifs : état des lieux de l’existant ; le thésaurus, un vocabulaire contrôlé pour parler le même langage ;
la recherche documentaire en soins palliatifs ; les médias sociaux : le monde est au bout de nos doigts ; la littérature scientifique française en soins palliatifs : cartographie bibliographique ; Palli@Doc : un point d’entrée unique à l’information en soins palliatifs ; la littérature de jeunesse au service de l’enfant hospitalisé ; se documenter, une ressource essentielle de praticien réflexif ; l’implication des documentalistes dans la recherche documentaire en soins palliatifs.
BACKGROUND: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products.
AIM: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies.
DESIGN: An online survey analysed using descriptive statistics.
SETTING/PARTICIPANTS: Eighteen principal investigators in 11 countries conducting one of three European-funded studies.
RESULTS: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues.
CONCLUSION: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.
CONTEXT: Few studies have examined how clinicians assess decision-making capacity for research in the last weeks of life.
OBJECTIVE: We examined the decision-making capacity for participation in a research study and its association with clinician impression and delirium among cancer patients with days to weeks of life expectancy.
METHODS: Patients admitted to our Palliative and Supportive Care Unit (PSCU) were approached for a prospective observational study. We assessed for their decision-making capacity based on clinical impression of physician and nurse, Memorial Delirium Assessment Scale (MDAS) and the MacArthur Competency Assessment Tool for Clinical Research (MacCAT-CR).
RESULTS: Among the 206 patients, 131 patients (64%) did not require MacCAT-CR assessment because they were overtly delirious or unresponsive; 37 (18%) patients were alert but did not complete the MacCAT-CR assessment for other reasons and 38 patients (18%) completed the MacCAT-CR assessment. Among these 38 patients, 5 (13%) were incapable and had normal albeit significantly higher MDAS scores compared to those who were capable (1.8 vs. 4.2, P=0.002). Compared against MacCAT-CR and MDAS, the overall agreement with capacity assessment with a clinician was 88% (95% CI 82-93%) for physicians and 90% (95% CI 82-94%) for nurses. The area-under the receiver-operating characteristics curve was 0.93 (95% CI 0.88-0.96) for physicians and 0.94 (95% CI 0.89-0.97) for nurses, suggesting high discrimination.
CONCLUSION: A majority of patients in the PSCU lacked decision-making capacity for participation in clinical research. Clinician impression had high accuracy. Few patients with normal MDAS were found to be incapable with MacCAT-CR assessment.