Objectif : Montrer que les unités de soins palliatifs (USP) s’intègrent dans une prise en charge globale du patient en proposant l’accès à de nombreuses techniques non médicamenteuses.
Introduction : Les USP sont des structures spécialisées en soins palliatifs, destinées aux patients les plus complexes. Ces unités proposent l’intervention d’équipes pluridisciplinaires afin de prendre en charge de façon globale le patient. À cette fin, nous pouvons penser que les USP proposent l’accès à des techniques non médicamenteuses. À ce jour, il n’existe pas d’état des lieux de ces pratiques. Le but de notre étude est de faire un état des lieux des pratiques non médicamenteuses dans les USP en France en 2019.
Matériel et méthodes : Nous avons réalisé une analyse descriptive, non exhaustive, proposée à l’ensemble des USP de France. Nous avons analysé le nombre de techniques non médicamenteuses proposées par chaque USP, en fonction du personnel réalisant le soin (intervention d’un personnel extérieur ou membre de l’équipe soignante médicale ou paramédicale).
Résultats : La totalité des 57 USP répondantes propose l’accès à au-moins une technique non médicamenteuse. En moyenne, 8,58 techniques non médicamenteuses sont proposées par USP. Certaines techniques non médicamenteuses sont pratiquées majoritairement par des intervenants extérieurs à l’USP, d’autres techniques par le personnel médical ou paramédical de l’USP, ou sont réalisées de façon mixte.
Discussion : Toutes les USP répondantes proposent l’accès à au-moins une technique non médicamenteuse, de façon multidisciplinaire. La prise en charge des patients est globale car elle prend en compte les symptômes physiques, psychologiques, sociaux et spirituels.
Yoga was developed >5,000 years ago as a comprehensive system of health and well-being for the mind, body, and soul. The word is believed to derive from the Sanskrit root "yuj" meaning to bind, yoke, union, and/or to concentrate one's attention. In health care, it often serves as a complementary mind-body practice, and it is increasingly being integrated into cancer care. It can be performed in the privacy of one's home through DVD or web-based programs or through group practices led by instructors who are often experienced working with students with medical issues. Most published evidence regarding yoga for seriously ill patients involves breast cancer survivors or breast cancer (stages I-IV) patients undergoing cancer treatment with a preserved functional capacity (ECOG <3). There is limited data examining its effectiveness or feasibility in children or for those with terminal cancer.
En 2020, la France expérimente l'utilisation du cannabis médical pour soulager les patients atteints par cinq catégories de maladies : les douleurs chroniques rebelles, l'épilepsie, les cancers, la sclérose en plaques et les soins palliatifs. Le médecin Pascal Douek répond aux questions relatives à cette expérimentation et dresse l'histoire de l'utilisation du cannabis à visée thérapeutique.
BACKGROUND: The paucity of empirical research examining complementary medicine (CM) use in palliative care in France compared with other countries results in a gap in scientific knowledge. This study aims to describe the frequency and the cause of palliative care patients consulting with a CM clinician along with the conventional physicians.
METHODS: This study is an observational cross-sectional survey conducted in three palliative care centres in Lyon, France, between July 2017 and May 2018: two tertiary hospitals and one palliative care unit in a private hospital. Inpatients and outpatients visiting the palliative care clinics with a primary diagnosis of cancer were invited to participate in the study. Using a 19-item paper-based survey instrument, we collected data on the participants' personal characteristics, health service utilisation and attitudes towards CM.
RESULTS: From the 138 participants meeting the inclusion criteria, 100 (72.4%) were included in the study. On average, they were 62.9 years old (SD 12.4) and the majority were women (60%). The primary cancer site was mostly colorectal (29.0%), breast (15.0%) and gynaecological (11.0%). The most commonly visited CM clinician was the aromatherapist (72.7%), recording more than six consultations (78.1%) for symptom management (21.9%). Visits to an osteopath were reported by 28.6% of patients, and 45.8% of osteopathy users reported visiting an osteopath more than six times for symptom management (62.5%). Participants visiting a naturopath (15.3%) reported less than four visits and indicated symptom management as the most common reason (76.9%).
CONCLUSIONS: Our findings show a substantial proportion of palliative care patients visit CM clinicians and primarily seek symptom management from CM clinical care.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Objective: To examine the association between physical activity and the reported use of complementary medicine by patients with breast and gynecological cancer referred or self-referred to a complementary/integrative medicine (CIM) consultation within a palliative care context.
Methods: Retrospective observational study analyzing the medical files of patients referred to a CIM consultation provided within a specialized integrative oncology clinic for demographic and cancer-related parameters; participation in physical exercise and activities; and current use of nonconventional medical practices. Quality of life (QoL) outcomes were assessed during the initial CIM consultation by using the Edmonton Symptom Assessment Scale (ESAS) tool.
Results: Among the 162 patient files examined, participation in physical activities was reported in 152, of whom 83 were identified as active and 69 inactive according to the American Cancer Society guidelines. A logistic multivariate regression model showed that physical activity was associated with higher rates of herbal/dietary supplement use for noncancer-related outcomes (odds ratio = 7.21, 95% confidence interval [CI] 1.6–32.46, p = 0.01); more frequently reported use of acupuncture for cancer-related outcomes (odds ratio = 7.79, 95% CI 1.93–31.5, p = 0.004); and lower ESAS scores for well-being (odds ratio = 0.77, 95% CI 1.0.65–0.92, p = 0.004), indicating better QoL.
Conclusion: Physical activity was found to be associated with a greater use of CIM (specifically herbal/dietary supplement use and acupuncture) in patients with breast and gynecological cancer during oncology treatment. Further research is needed to explore whether CIM use and physical activity are influenced by patients' health-belief models of care, and whether the CIM consultation can promote physical activity among these patients.
Objectives: This study was conducted before an evidence review on Traditional and Complementary Medicine (TCM) to update the clinical practice guidelines (CPGs): "Deciding palliative and end-of-life (P/EoL) care for people with diabetes." The aim was to frame the PICO (population/problems, interventions/comparisons, and outcomes), ascertain their importance, and identify other modifying factors for grading recommendations.
Design: A systematic scoping review mapped information about diabetes P/EoL problems and outcomes, TCM use, provision, benefits and risks, and stakeholder preferences and values. Thirteen electronic databases were searched in 2017/18 until no new information was identified. Relevant data were extracted, rated for quality, directness, and relevance, and synthesized using triangulation methods. Excluded was diabetes prevention or treatment, as this is not an important P/EoL problem.
Results: Of the 228 included articles, except for diabetes P/EoL problems, insufficient direct evidence led to data being extrapolated from either adults with diabetes or any P/EoL diagnosis. The findings affirmed that caring for people with diabetes in need of P/EoL care is complex due to multiple fluctuating needs that are influenced by the P/EoL trajectories (stable, unstable, deteriorating, terminal, or bereaved), multimorbidity, and difficult-to-manage chronic and acute problems. The only problem specific to diabetes P/EoL care, was unstable glycemia. Over 50 TCM interventions commonly used by patients and/or provided by services were identified, of which, many might simultaneously address multiple problems and 18 had been appraised in systematic reviews. Physical and psychologic symptom reliefs were most often evaluated; however, these were only one aspect of a "good death." Other important outcomes were the quality and location of care, personal agency, relationships, preparations for the dying process, spirituality, and affirmation of the whole person. Other important modifying factors included opportunity costs, affordability, availability, preferences, cultural appropriateness, and alignment with beliefs about the meaning of illness and death.
Conclusions: There is a role for TCM in the multidisciplinary holistic P/EoL care of people with diabetes. Due to the paucity of evidence specific to this population, the generalizability of some of these results is broader and the updated CPG will also need to consider indirect evidence from other patient groups. Along with recommendations about indications for TCM use, the CGP should provide guidance on ceasing unnecessary interventions, reducing polypharmacy and managing unstable glycemia is required. Before ceasing a TCM, a broader risk-benefit analysis is recommended, as unlike many conventional therapies, there may be multiple benefits warranting its continuation.
BACKGROUND: Interventions delivered in palliative care are complex and their evaluation through qualitative and quantitative research can lead to contrasting results. In a systematic review of trials, the effectiveness results of complementary therapies in palliative care were inconclusive; however, our qualitative synthesis showed participants perceived them to be beneficial.
AIM: Use a novel methodology to synthesise evidence from qualitative and quantitative systematic reviews on complementary therapy in palliative care to explore the following: (1) If interventions delivered in trials reflect how participants in qualitative studies report they are delivered in real-life settings and (2) whether quality of life measures used in trials capture perceived benefits that are reported in qualitative studies.
METHODS: Two matrix tables were formulated. In one, key components in delivery of the complementary therapy from the qualitative synthesis which are as follows: (1) relationship with therapist, (2) comfortable environment, (3) choices (e.g. area of massage) and (4) frequent sessions, were plotted against intervention description, to explore matches and mismatches. In the other, items included in quality of life scales were compared with perceived benefits of complementary therapy.
RESULTS: None of the trials included all four key delivery components. The five quality of life scales used in the trials failed to capture the range of perceived benefits from the complementary therapies and many included inappropriate or redundant items.
CONCLUSIONS: By integrating qualitative and quantitative review data, we determined the reasons trials may be inconclusive. This methodological exemplar provides a framework for understanding complexity in outcomes across trials and a direction for future research.
Objectives: Existing evidence supports the use of certain Chinese medicine (CM) interventions for symptom management among palliative cancer patients. However, evidence-based service recommendations tailored to the local context are needed for CM planning and implementation. In response, we aimed to establish consensus on CM clinical service recommendations for cancer palliative care among Hong Kong experts. Methods: Seven CM interventions showing statistically significant favorable results in existing systematic reviews (SRs) and overviews of SRs were subjected to a GRADE-ADOLOPMENT-based 2-round Delphi survey. Twelve Hong Kong experts in cancer palliative care, including conventionally trained physicians, CM practitioners, and nurses (n = 4 from each category), were invited to participate. Use of the Evidence to Decision framework within the GRADE-ADOLOPMENT approach enabled experts to consider aspects of problem priority, benefits, harms, equity, acceptability, and feasibility when making CM recommendations in cancer palliative care.
Results: Three evidence-based CM interventions reached positive consensus as service recommendations, namely: (1) acupuncture for reducing fatigue among palliative cancer patients; (2) acupressure for reducing fatigue among palliative cancer patients; and (3) moxibustion for reducing nausea and vomiting among patients receiving chemotherapy. Median rating of recommendation ranged from 2.5 to 3.0 (interquartile range = 0.00-1.00) on a 4-point Likert-type scale, and the percentage agreement ranged from 83.4% to 91.7%.
Conclusions: The GRADE-ADOLOPMENT approach facilitates a consensus-based process of reaching 3 evidence-based CM recommendations for cancer palliative care. Future studies may develop tailored strategies to implement these recommendations in the Hong Kong health system.
Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.
Background: Delirium is a common debilitating complication of advanced cancer.
Objective: To determine if a multicomponent nonpharmacological delirium prevention intervention was feasible for adult patients with advanced cancer, before a phase III (efficacy) trial.
Design: Phase II (feasibility) cluster randomized controlled trial. All sites implemented delirium screening and diagnostic assessment. Strategies within sleep, vision and hearing, hydration, orientation, mobility, and family domains were delivered to enrolled patients at intervention site admission days 1–7. Control sites then implemented the intervention (“waitlist sites”).
Setting: Four Australian palliative care units.
Measurements: The primary outcome was adherence, with an a priori endpoint of at least 60% patients achieving full adherence. Secondary outcomes were interdisciplinary care delivery, delirium measures, and adverse events, analyzed descriptively and inferentially.
Rsults: Sixty-five enrolled patients (25 control, 20 intervention, and 20 waitlist) had 98% delirium screens and 75% diagnostic assessments completed. Nurses (67%), physicians (16%), allied health (8.4%), family (7%), patients (1%), and volunteers (0.5%) delivered the intervention. There was full adherence for 5% patients at intervention sites, partial for 25%. Both full and partial adherence were higher at waitlist sites: 25% and 45%, respectively. One-third of control site patients (32%) became delirious within seven days of admission compared to one-fifth (20%) at both intervention and waitlist sites (p = 0.5). Mean (standard deviation) Delirium Rating Scale-Revised-1998 scores were 16.8 + 12.0 control sites versus 18.4 + 8.2 (p = 0.6) intervention and 18.7 + 7.8 (p = 0.5) waitlist sites. The intervention caused no adverse events.
Conclusion: The intervention requires modification for optimal adherence in a phase III trial.
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.
Bibliotherapy is a therapeutic intervention that could potentially be utilized by pediatric palliative care social workers to aid in providing individualized support and adaptive coping techniques through end-of-life and bereavement. Multiple modalities of implementing bibliotherapy are considered, including applications in individual and group counseling. An institutionally supported bibliotherapy program that aims to provide therapeutic and recreational texts for patients, families and clinicians is described. Suggested guidelines and book titles for use in practice with bereaved siblings and families are provided alongside targeted description for use in clinical practice.
AIM AND OBJECTIVES: To explore the experiences and views of nurses who provide non-pharmacological therapies for chronic pain management in palliative care.
BACKGROUND: Nursing expertise in palliative care is essential in providing pain relief to patients with chronic diseases. Examinations of the use of non-pharmacological therapies for chronic pain management in palliative care have revealed what non-pharmacological therapies have been used, but there is insufficient knowledge regarding nurses' attitudes, views, and experiences regarding pain therapies in this context.
DESIGN: A qualitative descriptive design was chosen.
METHODS: Data were collected through individual interviews in a purposive sample with 15 nurses to ensure maximum variation. The data were analyzed using qualitative content analysis. This study aligns with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.
RESULTS: The analysis yielded four categories, as follows: "Building and sustaining favorable therapeutic relationships" involved the creation of trust and a solid relationship; in "recognizing the diversity of patients' needs," person-centered care is expressed as being vital for individualized non-pharmacological pain management; "incorporating significant others" describes how nurses can help to ease the patient's pain by identifying positive encounters with family members or friends; and in "recognizing the existence of barriers," nurses highlight vulnerable groups such as children, for whom nurses require special education to enable optimal non-pharmacologic pain management.
CONCLUSION: The unique knowledge that nurses gain about the patient through the nurse-patient relationship is central and crucial for successful non-pharmacological pain management.
RELEVANCE TO CLINICAL PRACTICE: This study emphasizes the need for nurses to get to know their patient and to be open and sensitive to patients' descriptions of their unique life situations, as this provides the necessary knowledge for optimal care and pain management. Nurses should be encouraged and given the opportunity to attend specialized training in palliative care and pain management.
PURPOSE: Palliative care for cancer deals with physical, psychosocial, and spiritual issues faced by cancer patients, their families, communities, and healthcare providers. Research on complementary medicine (CM) use in France is limited despite high rates of reported CM use in other countries including by palliative patients. This study describes the use of CM by individuals receiving palliative care in Lyon, France.
DESIGN: This study employed an observational cross-sectional survey design.
SETTING/PARTICIPANTS: The study was conducted in three palliative care centers in Lyon, France; two tertiary hospitals and one palliative care unit (3 sites). Inpatients and outpatients visiting the palliative care clinic with a primary diagnosis of cancer at each study site were invited to participate.
RESULTS: Of 138 eligible patients, 100 completed the survey (RR 72.4%). The majority (90.7%) reported using CM in the previous 6 months or since their primary cancer diagnosis. Participant CM use was either the same (20.7%) or increased since their primary cancer diagnosis (33.7%). Average out-of-pocket expenses associated with CM use in the previous 6 months or since diagnosis were €157.40 (SD €330.15). The most common CM health professional visited was an aromatherapist (72.7%), a Coupeurs de feu (38.6%), osteopath (28.6%) and naturopath (15.3%). The most common CM used were aromatherapy oils (33.7%), homeopathy (30.0%), and vitamins (29.4%).
CONCLUSION: This second survey on CM use in France; is the first conducted in palliative care centers. Results show people with cancer in Lyon, France, have a very high prevalence of CM utilization.
In the past two decades, virtual reality (VR) technology has found use in a variety of clinical settings including pain management, physical medicine and rehabilitation, psychiatry, and neurology. However, little is known about the utility of VR in the palliative care setting. Moreover, previous investigations have not explored user perceptions of the VR experience in this population. Understanding user perceptions of the VR intervention will be critical for the development and delivery of effective VR therapies. To examine the utility of VR for palliative care patients, a pilot study of VR use was conducted with 12 adult patients diagnosed with life-limiting illness who were residents at a free-standing hospice facility. The intervention consisted of a one-time 30-minute VR experience. User perceptions were assessed through both quantitative and qualitative means, including participant responses to open-ended questions after the VR intervention. Acute changes in symptom burden were assessed using the revised Edmonton Symptom Assessment Scale. Participants found the VR experience to be both enjoyable and useful, and the intervention was well-tolerated overall. This study provides support for VR as a promising new therapeutic modality for patients undergoing palliative care.
Involving patients in their own care is associated with improved health outcomes. Complementary therapies are popular among patients and enable them to receive the palliative care they want and need. However, the range of complementary therapy services available to patients need to be evaluated for efficacy. This study evaluated the complementary therapy services offered at one cancer outpatient clinic in the UK, with the aim of evaluating the effect of complementary therapies on patient wellbeing and to systematise concerns and categories of wellbeing in order to improve service provision. A sample of 60 patients rated their feelings of wellbeing on a Likert scale before and after a series of six complementary therapies. They were also asked which concerns they had and, after treatment, were asked about factors that may influence their wellbeing. The data were analysed quantitatively by t-test and Wilcoxon signed ranks and the results show a statistically significant improvement in wellbeing. The concerns were assigned into super categories to aid service provision and the other factors that influence general wellbeing were assessed to categorise areas of patient needs that may be addressed in patient care. These results highlight important areas for investigation, which have implications for service provision in palliative cancer care.
Background: Patients with pulmonary hypertension (PH) experience distressing symptoms that can undermine quality of life (QoL) and treatment adherence. Complementary health approaches are known to help manage symptoms of chronic conditions and may have therapeutic benefits in PH.
Objective: To explore the impact of Urban Zen Integrative Therapy (UZIT) on PH-related symptoms.
Design: A within-subjects, pre-/post-intervention, repeated-measures design.
Subjects/Setting: Community-dwelling adults with PH received weekly UZIT sessions in an outpatient setting.
Measurements: Participants (n = 14) rated symptoms before and after each session and before and after the six-week UZIT program. Mixed-effects modeling with repeated measures was used to estimate differences in mean symptom scores before and after individual sessions. Cohen's d effect sizes were used to evaluate the impact of the UZIT program on symptoms.
Results: Mean scores for pain (F(1, 105) = 19.99, p < 0.001), anxiety (F(1, 96) = 24.64, p < 0.001), fatigue (F(1, 120) = 15.68, p < 0.001), and dyspnea (F(1, 68) = 16.69, p < 0.001) were significantly reduced after UZIT sessions. Effects were moderate to large for symptom severity (d = 0.59–1.32) and moderate for symptom burden (d = 0.56) and fatigue (d = 0.62), and small for QoL (d = 0.33) after the six-week UZIT program.
Conclusions: Individualized UZIT sessions were associated with reductions in symptom severity for pain, anxiety, fatigue, and dyspnea. The six-week UZIT program was associated with improvements in symptom burden, activity limitation, and QoL.
The death of a loved one is ultimately a universal experience. However, conventional interventions employed for people suffering with uncomplicated grief have gathered little empirical support. The present study aimed to explore the potential effects of ayahuasca on grief. We compared 30 people who had taken ayahuasca with 30 people who had attended peer-support groups, measuring level of grief and experiential avoidance. We also examined themes in participant responses to an open-ended question regarding their experiences with ayahuasca. The ayahuasca group presented a lower level of grief in the Present Feelings Scale of Texas Revised Inventory of Grief, showing benefits in some psychological and interpersonal dimensions. Qualitative responses described experiences of emotional release, biographical memories, and experiences of contact with the deceased. Additionally, some benefits were identified regarding the ayahuasca experiences. These results provide preliminary data about the potential of ayahuasca as a therapeutic tool in treatments for grief.
PURPOSE OF REVIEW: There is a high prevalence of delirium in palliative care patients. This review aims to evaluate the effects of the pharmacological and nonpharmacological interventions used to manage delirium symptoms in this patient group.
RECENT FINDINGS: A recent study has suggested there is no role for antipsychotic medication in the management of delirium in palliative care patients, which is a move away from previous expert opinion. In addition, recent findings suggest there may be a role for the use of antipsychotics in combination with benzodiazepines in the management of agitated delirium.
SUMMARY: It is too early to abandon the use of antipsychotic medication entirely in the management of delirium, however there remains inadequate evidence to support the routine use of either pharmacological or nonpharmacological interventions for delirium treatment. Clinicians should determine the delirium subtype and severity, using this to inform the most appropriate pharmacological treatment if required. Further rigorously designed research is needed to seek clarity over whether the alleviation of symptoms is dose dependent, and to determine whether there is a severity threshold over which pharmacological interventions are most effective. Future research is required to evaluate nonpharmacological interventions in this population.