'Thank you for loving me': A qualitative study on perceptions of gratitude and their effects in palliative care patients and relatives.

BACKGROUND: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. AIM: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. DESIGN: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. SETTINGS/PARTICIPANTS: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. RESULTS: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. CONCLUSION: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care.

[Medical students facing death : death is the only certainty in life]. / Étudiant-e-s en médecine face à la mort : chassez le spectre, il revient au galop.

Every medical student is confronted with death at some point in his/her career. This inevitable experience is often accompanied by intense emotions, both enriching and painful. However, too little attention is paid to these aspects during the training course, and the support given to students by their trainers is often uncertain. We will discuss these aspects here, along with a few ideas for improvement, based on the international literature and our own experience in the field.

Toute étudiante en médecine est, à un moment ou un autre de son parcours, confrontée à la mort. Cette expérience inévitable est bien souvent accompagnée d'intenses émotions, enrichissantes ou douloureuses. Ces aspects sont cependant trop peu abordés durant le cursus de formation, parallèlement à un accompagnement bien souvent aléatoire des étudiantes par leurs formateurs-trices. Nous évoquons ici ces aspects ainsi que quelques pistes d'amélioration, en nous basant sur la littérature internationale et notre expérience de terrain.

[Borderline personality disorder and end of life: a major challenge]. / Trouble de la personnalité borderline et fin de vie : un défi de taille.

The care of patients suffering from a borderline personality disorder confronted with death is a relational and clinical challenge for interdisciplinary teams. In this specific context, the particular psychic vulnerability of these patients highlights multiple issues. Based on the scarce existing literature and our clinical experience, this article presents management strategies in order to best support this population weakened by serious illness as well as the interdisciplinary teams that care for them.

La prise en soins de patients souffrant d'un trouble de la personnalité borderline confrontés à la mort est un défi relationnel et clinique pour les équipes interdisciplinaires. Dans ce contexte particulier, la vulnérabilité psychique de ces patients met en lumière de multiples enjeux. Cet article propose, sur la base de la rare littérature existante et de notre expérience clinique, des stratégies de prise en soins afin d'accompagner au mieux cette population fragilisée par la maladie grave ainsi que les équipes interdisciplinaires qui en prennent soin.

Giving and receiving thanks: a mixed methods pilot study of a gratitude intervention for palliative patients and their carers.

BACKGROUND: Psychological research examining the nature and workings of gratitude has burgeoned over the past two decades. However, few studies have considered gratitude in the palliative care context. Based on an exploratory study which found that gratitude was correlated with better quality of life and less psychological distress in palliative patients, we designed and piloted a gratitude intervention where palliative patients and a carer of their choice wrote and shared a gratitude letter with each other. The aims of this study are to establish the feasibility and acceptability of our gratitude intervention and provide a preliminary assessment of its effects. METHODS: This pilot intervention study adopted a mixed-methods, concurrent nested, pre-post evaluation design. To assess the intervention's effects, we employed quantitative questionnaires on quality of life, quality of relationship, psychological distress, and subjective burden, as well as semi-structured interviews. To assess feasibility, we considered patients and carers' eligibility, participation and attrition rates, reasons for refusal to participate, appropriateness of intervention timeframe, modalities of participation, and barriers and facilitators. Acceptability was assessed through post-intervention satisfaction questionnaires. RESULTS: Thirty-nine participants completed the intervention and twenty-nine participated in interviews. We did not find any statistically significant pre/post intervention changes for patients, but found significant decrease in psychological distress for carers in terms of depression (median = 3 at T0, 1.5 at T1, p = .034) and total score (median = 13 at T0, 7.5 at T1, p = .041). Thematic analysis of interviews indicates that overall, the intervention had: (1) multiple positive outcomes for over a third of interviewees, in the form of positive emotional, cognitive, and relational effects; (2) single positive outcomes for nearly half of interviewees, who experienced emotional or cognitive effects; (3) no effect on two patients; and (4) negative emotional effects on two patients. Feasibility and acceptability indicators suggest that the intervention was well received by participants, and that it should adopt flexible modalities (e.g. writing or dictating a gratitude message) to ensure that it is feasible and adapted to individual needs and preferences. CONCLUSIONS: Larger scale deployment and evaluation of the gratitude intervention, including a control group, is warranted in order to have a more reliable evaluation of its effectiveness in palliative care.

[Artificial nutrition in advanced palliative situations : Issues and recommendations]. / Nutrition artificielle en situation palliative avancée : quels enjeux et quelles recommandations ?

This article focuses on the recommendations and issues of artificial nutrition (AN) in advanced palliative situations. In oncological situations, stages of cachexia and performance indexes help guide the decision-making process regarding the indications for AN. AN is usually not recommended in low performance indexes (Karnofsky ≤50 %, ECOG ≥ 3) nor in refractory cachexia. In some cases, a time-limited therapeutic trial may be suggested, with its effectiveness assessed by measurable goals. In advanced dementia, AN is not recommended. Often at the source of an AN request, the emotional aspect deserves to be explored in order to assess the patient's and his/her family's expectations and fears.

Cet article s'intéresse aux recommandations et aux enjeux de la nutrition artificielle (NA) en situation palliative avancée. En situation oncologique, les stades de cachexie et les indices de performance permettent d'orienter le processus décisionnel quant aux indications de la NA. Cette dernière est en général contre- indiquée lors d'indice de performance bas (Karnofsky ≤ 50 %, ECOG/ Eastern Cooperative Oncology Group ≥ 3) et lors de cachexie réfractaire. Dans certains cas, un essai thérapeutique d'un temps limité peut être proposé, dont l'efficacité est évaluée par des objectifs mesurables. En situation de démence avancée, la NA n'est pas recommandée. Souvent à l'origine d'une demande de NA, l'aspect émotionnel mérite d'être exploré afin d'évaluer les angoisses et les (faux) espoirs du patient et de ses proches.

[Suffering relatives of patients with terminal illness : Identifying and improving ways to support in hospital]. / Souffrance des proches de malades en phase terminale : identifier pour mieux accompagner en milieu hospitalier.

Suffering is a universal entity, multidimensional, but also unique and personal. Unfortunately, it is often underdiagnosed, while it is omnipresent in our hospital practice. This article offers to physicians some ideas for the exploration and identification of the suffering of an end of life patient's relatives, and especially some tools for improving ways to support.

La souffrance est une entité universelle, multidimensionnelle, mais aussi unique et personnelle, paradoxalement sous-diagnostiquée, alors qu'elle est omniprésente dans notre pratique en milieu hospitalier. Le but de cet article est de proposer au lecteur quelques pistes pour l'exploration et l'identification de la souffrance des proches de patients en situation palliative, et surtout quelques outils d'accompagnement et de soutien.

[Death anxiety in palliative phase: a taboo to overcome]. / Angoisse de mort en phase palliative : un tabou à dépasser.

Death anxiety is a frequent symptom in patients in the palliative phase of their disease, yet it is rarely explored. Several obstacles are responsible for this undervaluation including some on the medical side. For example: the fear of hurting the patient's feelings, one's own representations and projections onto patients. The lack of exploration and consequently the lack of support can have a dramatic impact on patients' quality of life. So, as to do the right thing, how should one act? This paper will, based on the literature and experience, explore some of the different avenues to help primary care physicians overcome this taboo.

L'angoisse de mort est un symptôme très fréquent et rarement évalué chez les patients en phase palliative de leur maladie. Plusieurs obstacles, notamment du côté médical, sont à l'origine de cette sous-évaluation, comme, par exemple, la peur de heurter, les représentations et les projections sur le patient. L'absence d'évaluation et par conséquent le manque d'accompagnement peuvent avoir un impact dramatique sur sa qualité de vie. Comment faire pour bien faire ? Basées sur la littérature et l'expérience, quelques pistes de réflexion sont explorées dans cet article pour aider le praticien à dépasser ce tabou.

[Extreme end-of-life situations and opioids : the double effect principle, a helpful guide]. / Situations extrêmes de fin de vie et opioïdes : le principe du double effet, une aide bienvenue !

The death of a patient taking opioids can generate strong feelings of guilt. « Have I hastened my patient's death by my administration of opioids ? ¼ Doubts may arise in certain situations, despite the proven safety of appropriate opioid use in the management of dyspnea and pain in the palliative care setting. Fearing the harms of opioid administration, some medical practitioners may undertreat patients, forsaking them to suffering. Other doctors, desperate to relieve their excruciating suffering at all cost, may in fact have recourse to euthanizing acts. This article seeks to answer this ethical dilemma with an overview of the double effect principle.

La mort d'un patient en situation palliative sous opioïde génère parfois un fort sentiment de culpabilité. « Ai-je précipité le décès du patient avec mon traitement opioïde ? ¼ Bien que la littérature soit très claire quant à la sécurité des opioïdes utilisés correctement pour la gestion de la dyspnée ou de la douleur en soins palliatifs, il se peut que, dans certaines situations, on puisse en douter. Le médecin, face à sa crainte de nuire en administrant des opioïdes, pourrait être tenté de sous-traiter le patient, au risque de l'abandonner à sa souffrance. D'un autre côté, l'impuissance face à l'intensité de la souffrance du patient pourrait amener le médecin à vouloir le soulager à tout prix, au risque d'un geste euthanasiant. Cet article propose un aperçu du principe du double effet, comme élément de réponse à ce dilemme éthique.

[Opiophobia†: a current, well-founded and historical fear - What are the issues for palliative care†?] / Opiophobie†: une crainte actuelle, fondée et historique - Quels enjeux pour les soins palliatifs†?

Opiophobia is one of the principal causes of opioids' under-prescription in palliative care. From periods of abuse to times where their use was banned - which is still the case in some countries - the history of opioids is complex and it partially explains opiophobia. One of the main concern about the use of opioids is the risk of -dependence. Furthermore, scientific literature is not clear on this subject, in particular due to the fact that the scientific community has not yet come to an agreement on the terminology. This article shows, on the basis of specific studies, the predominance of opiophobia among the population and it outlines an historic overview of the use of opioids. In the last section, it focuses on the concept of dependence and the difficulty of measuring it in chronic opioid therapies.

L'opiophobie reste l'une des causes importantes de sous-prescription d'opioïdes en soins palliatifs. Elle s'explique entre autres par une histoire forte, marquée d'abus puis d'interdiction stricte, encore en vigueur dans certains pays. Ce qui est le plus craint est le risque de dépendance. La littérature à ce sujet manque de clarté en raison entre autres d'un manque de consensus dans les termes employés. Cet article revient sur des études relevant la prévalence de l'opiophobie dans la population, ainsi qu'un bref survol historique de l'utilisation des opioïdes. La dernière partie s'intéresse à la notion de dépendance et à la difficulté de la mesurer dans les traitements chroniques aux opioïdes.

Validation of the French Version of the Edmonton Symptom Assessment System.

CONTEXT: The Edmonton Symptom Assessment System (ESAS) is a brief, widely adopted, multidimensional questionnaire to evaluate patient-reported symptoms. OBJECTIVES: The objective of this study was to define a standard French version of the ESAS (F-ESAS) to determine the psychometric properties in French-speaking patients. METHODS: In a first pilot study, health professionals (n = 20) and patients (n = 33) defined the most adapted terms in French (F-ESAS). In a prospective multicentric study, palliative care patients completed the three forms of F-ESAS (F-ESAS-VI, F-ESAS-VE, and F-ESAS-NU, where VI is visual, VE, verbal, and NU, numerical), the Hospital Anxiety and Depression Scale. All patients had a test-retest evaluation during the same half-day. Standardized distraction material was used between each scale. RESULTS: One hundred twenty-four patients were included (mean age [±SD]: 68.3 ± 12; 70 women; 54 men). Test-retest reliability was high for all three F-ESAS, and the correlation between these scales was nearly perfect (Spearman rs = 0.66-0.91; P < 0.05). F-ESAS-VI, F-ESAS-VE, and F-ESAS-NU performed similarly and were equally reliable, although there was a trend toward lower reliability for F-ESAS-VI. Correlation between F-ESAS depression and anxiety and HADS depression and anxiety, respectively, were positive (Spearman rs = 0.38-0.41 for depression; Spearman rs = 0.48-0.57 for anxiety, P < 0.05). Among patients, 59 (48%), 45 (36%), and 20 (16%) preferred to assess their symptoms with F-ESAS-VE, F-ESAS-NU, and F-ESAS-VI, respectively. CONCLUSION: The F-ESAS is a valid and reliable tool for measuring multidimensional symptoms in French-speaking patients with an advanced cancer. All forms of F-ESAS performed well with a trend for better psychometric performance for F-ESAS-NU, but patients preferred the F-ESAS-VE.

[Prognostication : prophecy or medical practice ?] / Pronostic : prophétie ou bonne pratique médicale ?

The issue of prognostication is seldom approached in medical education, even though it represents an important question for the patients. Clinical assessment alone is inaccurate and systematically over-optimistic, especially if the question is formulated in temporal terms (how long will the patient live ?). The inaccuracy augments if the doctor has known the patient for a long time. However, other ways of addressing the question exist, and several validated clinical tools are available to improve the accuracy of the prognosis. The patients' self-rating and the evaluation by the nursing staff should also be considered as valuable information.

L'aspect pronostique est souvent peu thématisé dans la formation mais reste une question fréquente de la part des patients. L'évaluation clinique seule, surtout si approchée avec une question temporelle (combien de temps le patient va-t-il encore vivre ?) est très peu précise et systématiquement optimiste, surtout de la part des médecins qui connaissent bien le patient. Il existe cependant d'autres manières d'aborder la question ainsi que des outils cliniques validés permettant d'étayer une impression clinique. Le ressenti du patient lui-même ainsi que l'évaluation de la part des soignants sont également des éléments à considérer.

[Hypnosis as a resource in palliative care. A qualitative study of the contribution of hypnosis to the care of oncology patients]. / L'hypnose: une ressource en soins palliatifs? Etude qualitative sur l'apport de l'hypnose chez des patients oncologiques.

Hypnosis is recognised in medicine as an effective complementary therapy. However, few qualitative data are available concerning the benefits it may bring. This qualitative exploratory study aimed to examine the contribution of hypnosis to the care of advanced cancer patients. Results demonstrate that hypnosis is an effective and efficient means of developing the resources of people suffering from serious illness. After an average of four hypnotherapy sessions, patients said they were able to locate previously unexploited resources within themselves and were able to become autonomous in the use of self-hypnosis. The major benefit reported concerned a reduction in anxiety. For patients experiencing anxiety about death, hypnosis allowed them, within a therapeutic environment perceived as safe, to explore different facets of their fears and to develop adaptive strategies. Aside from slight fatigue experienced during the sessions, no adverse side-effects were reported. In conclusion, this study exploring the effects of hypnosis allowed us to identify important benefits for patients suffering from advanced cancer. Consequently, replication on a larger scale is recommended in order to ascertain the extent to which it is possible to generalise from these results and in order better to define the characteristics of patients most likely to benefit from this therapy.

Referrals of cancer versus non-cancer patients to a palliative care consult team: do they differ?

This retrospective study compared 100 consecutive non-cancer (NC) patients referred to a palliative care consult team (PCT) in a Swiss university hospital to 506 cancer (C) patients referred during the same period. The frequencies of reported symptoms were similar in both groups. The main reasons for referral in the NC group were symptom control, global evaluation, and assistance with discharge. Requests for symptom control predominated in the C group. Prior to the first visit, 50% of NC patients were on opioids, compared to 58% of C patients. After the first visit, the proportion of NC patients on opioids increased to 64% and the proportion of C patients to 73%. The median daily oral morphine equivalent dose for NC patients taking opioids prior to the first PCT visit was higher than that for C patients (60 mg versus 45 mg). At the time of death or discharge, the percentage of NC patients on opioids was 64%, while that of C patients was 76%. Moreover, NC patients were on significantly lower median doses of opioids than C patients (31 mg versus 60 mg). Over half the NC patients died during hospitalization, as compared to 33% of C patients. Only 6% of NC patients were discharged to palliative care units, as compared to 22% of C patients.