Les causes de rupture du maintien au domicile de personnes en fin de vie sont souvent liées à l’épuisement des proches et au sentiment d’insécurité. L’objectif de cette étude est de connaître les attentes envers le médecin généraliste (MG) de l’aidant principal d’une personne en phase palliative avancée au domicile. Il s’agit d’une étude qualitative sur la base de dix entretiens semi-directifs menés avec un guide d’entretien auprès de proches de personnes décédées. Les enregistrements ont fait l’objet d’une analyse de contenu. Les principales attentes envers le MG concernent sur le plan technique, un ajustement des thérapeutiques ; sur le plan organisationnel, une disponibilité importante ainsi qu’un lien entretenu avec les différents intervenants et les structures notamment de soins palliatifs ; sur le plan relationnel, une écoute et une information sur l’évolution de la maladie ; sur le plan décisionnel, le respect de la volonté du patient. Les résultats sont discutés à partir de trois concepts adaptés au MG, à savoir la capacité d’adaptation de sa pratique et de son savoir-être, l’anticipation des situations d’urgence et de l’évolution de la maladie, et enfin l’assurance d’une continuité des soins qui passe notamment par leur permanence et leur coordination. Les moyens dont dispose le MG paraissent insuffisants pour assurer le maintien à domicile devant la charge que représente un patient en phase palliative avancée. La diffusion de la démarche palliative au domicile et l’optimisation de l’interprofessionnalité auprès des personnes en fin de vie au domicile et de leurs proches sont à développer. L’enjeu est le respect de la demande du patient de mourir à son domicile.
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.
Ces recommandations de la Haute Autorité de Santé ont pour objectifs de mieux définir les modalités d'utilisation des traitements médicamenteux, en particulier hors AMM, en situation palliative et phase terminale chez l'adulte :
- pour l'antalgie des douleurs rebelles ou la prévention des douleurs rebelles provoquées ;
- pour la sédation, qu'elle soit proportionnée ou profonde et continue maintenue jusqu'au décès ;
- y compris, le cas échéant, les modalités spécifiques au domicile.
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The majority of patients with esophagus cancer have advanced-stage disease without curative options. For these patients, treatment is focused on improving symptoms and quality of life. Despite this, little work has been done to quantify symptom burden for incurable patients. We describe symptoms using the Edmonton Symptom Assessment System (ESAS) among esophagus cancer patients treated for incurable disease. This retrospective cohort study linked administrative datasets to prospectively collected ESAS data of non-curatively treated adult esophagus cancer patients diagnosed between January 1, 2009 and September 30, 2016. ESAS measures nine common cancer-related symptoms: anxiety, depression, drowsiness, lack of appetite, nausea, pain, shortness of breath, tiredness, and impaired well-being. Frequency of severe symptoms (score = 7/10) was described by month for the 6 months from diagnosis for all patients and by treatment type (chemotherapy alone, radiotherapy alone, both chemotherapy and radiotherapy, and best supportive care). A sensitivity analysis limited to patients who survived at least 6 months was performed to assess robustness of the results to proximity to death and resulting variation in follow-up time. Among 2,989 esophagus cancer patients diagnosed during the study period and meeting inclusion criteria, 2,103 reported at least one ESAS assessment in the 6 months following diagnosis and comprised the final cohort. Patients reported a median of three (IQR 2–7) ESAS assessments in the study period. Median survival was 7.6 (IQR 4.1–13.7) months. Severe lack of appetite (53.1%), tiredness (51.1%), and impaired well-being (42.7%) were the most commonly reported symptoms. Severe symptoms persisted throughout the 6 months after the diagnosis. Subgroup analysis by treatment showed no worsening of symptoms over time in those treated by either chemotherapy alone, or both chemotherapy and radiation. Results followed a similar pattern on sensitivity analysis. Patients diagnosed with incurable esophagus cancer experience considerable symptom burden in the first 6 months after diagnosis and the frequency of severe symptoms remains high throughout this period. Patients with this disease require early palliative care and psychosocial support upon diagnosis and support throughout the course of their cancer journey.
BACKGROUND: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important.
AIM: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care.
METHODS: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test.
RESULTS: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation.
CONCLUSIONS: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.
Purpose: The transition from active cancer treatment to palliative care often results in a shift in drug risk-benefit assessment which requires the deprescribing of various medications. Deprescribing in palliative cancer patients can benefit patients by reducing their pill burden, decrease potential side effects, and potentially decrease healthcare costs. In addition, a change in patients’ goals of care (GOC) necessitates the alteration of drug therapy which includes both deprescribing and the addition of medications intended to improve quality of life. Depending on a patient’s GOC, a medication can be considered as inappropriate.
Objectives: Primary: Comparison between potentially inappropriate medications (PIMs) prior to the palliative care consult (PCC) versus after the PCC. Secondary: Association between PIMs and GOC.
Methods: The study was a 1-year retrospective database review. The study included cancer patients seen by the PCC team at the University of Alberta Hospital. The OncPal guidelines were used to identify and determine the number of PIMs prior to the PCC and after the PCC.
Results: The reduction in PIMs prior to PCC versus after the PCC was statistically significant (p value < 0.001), demonstrating the PCC has a positive significant impact on deprescribing PIMs. For our secondary outcome, an overall decrease in PIMs was observed with the changes of GOC. The strength of the correlations was low (r < 0.1), and the p value was 0.056.
Conclusion: This study shows the positive impact a PCC has on deprescribing and reveals the importance of using guidelines for deprescribing in palliative cancer patients.
BACKGROUND: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents.
DISCUSSION: Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility.
CONCLUSIONS: Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.
INTRODUCTION: Hospice care (HC) in the Netherlands is available for patients with life expectancies <3 months. Little is known about expectations of patients who might be in need of HC. This study aims to gain insight into expectations of patients regarding HC in order to ameliorate HC to become driven by patient needs.
DESIGN: A generic qualitative study, using semistructured interviews and thematic analysis, is performed in the Netherlands from January to June 2018. A purposeful sample of 13 participants was drawn.
RESULTS: Participants expected hospice admission only when the burden became unbearable and a home death cannot be reached. Participants expected a homely atmosphere, where one can continue the life lived at home as much as possible. Participants supposed empathic professional caregivers, capable of providing appropriate care. The general practitioner is expected to stay involved in the care process due to the mutual trust. Medical and daily care are required to be provided by competent professionals, where volunteers are expected to provide supportive care. All caregivers are supposed to provide a listening ear and "being there" for participants. Social care and spiritual care are generally projected to be private matters, unless it is requested.
CONCLUSIONS: Patients in the palliative phase who might be in need of HC have specific expectations. Perceptions of HC in the public domain should be nuanced in response to these expectations, and information provision on HC should be improved. Then, expectations could be met to make HC more driven by patient needs and future oriented.
In Sweden, patients in early palliative stages of illness are cared for in primary care and often offered home care. Many are older and at risk for malnutrition, but little is known about their symptom burden and nutritional problems. This cross-sectional study divided older patients in home care into those with and without risk for malnutrition and compared symptom burden in the 2 groups. Participants were patients in Stockholm County (n = 121) in early palliative stages of disease cared for at home by primary care professionals from 10 health-care centers. The Mini Nutritional Assessment (MNA) was used to identify risk for malnutrition. Symptoms and/or nutritional status in patients with and without risk were assessed with the Functional Assessment of Anorexia/Cachexia Therapy (FAACT), Patient-Generated Subjective Global Assessment Short Form (PG-SGA), and Edmonton Symptom Assessment System (ESAS). Forty-two percent of the patients were at risk for malnutrition (MNA). Appetite (P = .012), tiredness (P = .003), and anxiety (P = .008) were worse in these patients than in those without risk (ESAS; significance level, P = .015). Patients at risk were also more concerned about how thin they looked (P = .006), agreed more strongly that their family or friends were pressuring them to eat (P = .000; FAACT; significance level, P = .029), had a higher symptom burden (P = .005), had lower physical activity (P = .000), and more lost weight over time (P = .032; PG-SGA; significance level, P = .040). This study adds a more detailed picture of the symptom burden in older patients at risk for malnutrition. Such information is needed to identify risk for malnutrition earlier and improve patients’ health.
End-of-life care in the intensive care unit is fraught with complicated psychological responses by patients, families, and staff. Empathic and mindful communication, inclusion of all integral staff in decision-making meetings, and multidimensional support of patients and families can ease the transition away from aggressive life-prolonging to comfort-oriented end of life care. Primary palliative care communication strategies can help clarify goals of care and facilitate transitions. Early integration of specialist palliative care is recommended.
Faecal incontinence can be a distressing and undignified experience, and is particularly a care delivery need for those at the end of life. There are various publications by national bodies including NHS England, the Department of Health, NHS Scotland and others, discussed in this article, to inform readers of the best way to care for someone experiencing faecal incontinence who is being looked after through palliative care in the community. The article will also discuss the application of recommended faecal collection devices and some of the associated risks. The devices discussed are: anal pouches, rectal tubes and catheters, and rectal trumpets. The article aims to inform the practice of community and district nurses providing palliative care.
Ce travail de mémoire essayera de déterminer pourquoi la prise en charge de la souffrance existentielle chez des patients en situation palliative met les praticiens amenés à les prendre en charge en difficulté. Dans une première partie, nous aborderons le cadre conceptuel de la souffrance existentielle et de la sédation profonde et continue. La deuxième partie abordera la méthode de ce travail de recherche puis les résultats. Dans une dernière partie, les résultats de cette étude seront discutés au regard des données de la littérature actuelle.
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PURPOSE: Among breast cancer subgroups, Luminal A is the subgroup with the best prognosis. We report the case of a young woman presenting with a localized luminal A breast cancer with a suspicious liver lesion on initial positron emission tomography (PET)/computed tomography (CT) scan staging.
CASE DESCRIPTION: A 31-year-old woman presented with localized breast cancer accessible to curative treatment. However, PET/CT staging revealed an increase of focal activity in the liver, suspicious of a secondary malignant localization, changing the care towards palliative intent. Discrepancy between breast cancer luminal A subtype and the liver lesion led to further investigations (contrast ultrasound, magnetic resonance imaging, and biopsy), excluding a malignant process, and were in favor of toxic hepatitis, probably secondary to herbal tea consumption.
CONCLUSIONS: Questioning PET/CT findings in light of the cancer subtype enabled us to rectify the diagnosis and allow this patient to be treated with curative intent.
L'interprofessionnalitéest un des pilliers qui contribuent à l'aide et à l'amélioration des soins donc particulièrement à l'accompagnement des personnes âgées en situation palliative. L'investissement de chacun et l'association des diverses compétences, fait en sorte que les résidents ne sont pas seuls dans cette ultime étape de leur vie et les collaborateurs participent activement à leur accompagnement. Grâce aux échanges, aux réflexions entre collaborateurs, les compétences différentes sont en fait complémentaires et enrichi chacun dans son parcours professionnel : "cela fait de nous ce que nous sommes aujourd'hui" selon Anna, rédactrice de cet article.
Cette étude présente un patient atteint d’une sclérose latérale amyotrophique (SLA) bulbaire en phase palliative symptomatique. Le Projet de Vie du patient était de participer à un hommage sportif organisé en son honneur dans les 10 jours. Lors de l’hospitalisation, le patient a présenté une détresse respiratoire aiguë sur pneumonie impliquant une démarche décisionnelle collégiale. L’adaptation des interventions thérapeutiques a permis de réaliser le Projet de Vie malgré une fin de vie proche. Le décès est survenu deux jours après l’hommage. Ce cas clinique permet d’illustrer l’interdisciplinarité au sein des équipes, et de discuter l’intrication synergique entre technique et relation.
BACKGROUND: There is evidence indicating that family sense of coherence predicts quality of family life and promotes family well-being. In families living with the palliative phase of cancer, low hope, anxiety and symptoms of depression are common in both persons with cancer and their family members.
AIM: To determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression, respectively, in persons with cancer in the palliative phase and their family members.
DESIGN: An observational, cross-sectional, multicentre study was conducted. Nested linear regression analyses were performed in two blocks to determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression.
SETTING/PARTICIPANTS: Persons with cancer (n = 179) and their family members (n = 165) were recruited from two oncology clinics and two palliative centres in three regions in Sweden.
RESULTS: The main findings showed that family sense of coherence was significantly and independently associated with hope, anxiety and symptoms of depression. Stronger family sense of coherence was associated with higher hope and lower anxiety and symptoms of depression levels in both persons with cancer and their family members.
CONCLUSION: Health care providers should strive to identify families with weak family sense of coherence, because of its associations with hope, anxiety and symptoms of depression, in order to offer them professional support and thereby achieve increased well-being during the palliative phase of cancer. Future studies should expand our knowledge of family sense of coherence and how to identify families at risk of lower levels of well-being.
BACKGROUND: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities.
METHOD: In-depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis.
RESULTS: Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate.
CONCLUSIONS: A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care.
Background: Cancer affects millions of individuals globally, with a mortality rate of over eight million people annually. Although palliative care is often provided outside of specialist services, many people require, at some point in their illness journey, support from specialist palliative care services, for example, those provided in hospice settings. This transition can be a time of uncertainty and fear, and there is a need for effective interventions to meet the psychological and supportive care needs of people with cancer that cannot be cured. Whilst Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive.
Method: This mixed-methods study uses a single-case experimental design with embedded qualitative interviews to pilot test a novel intervention for this patient group. Between 14 and 20 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills (openness, awareness and engagement) as a way to deal effectively with challenges of transition into specialist palliative care services. Outcome measures include cancer-specific quality of life (primary outcome) and distress (secondary outcome), which are assessed alongside measures of psychological flexibility. Daily diary outcome assessments will be taken for key measures, alongside more detailed weekly self-report, through baseline, intervention and 1-month follow-up phases. After follow-up, participants will be invited to take part in a qualitative interview to understand their experience of taking part and acceptability and perceived effectiveness of the intervention and its components.
Discussion: This study is the first investigation of using ACT with terminally ill patients at the beginning of their transition into palliative treatment. Using in-depth single-case approaches, we will refine and manualise intervention content by the close of the study for use in follow-up research trials. Our long-term goal is then to test the intervention as delivered by non-psychologist specialist palliative care practitioners thus broadening the potential relevance of the approach.
Trial registration: Open Science Framework, 46033. Registered 19 April 2018.
BACKGROUND: Early start of palliative care improves the quality of life of eligible patients and their relatives. However, in hospital, patients who could benefit from palliative care are often not identified timely. The aim of this study is to assess how hospital-based nurses and physicians define the palliative phase, how they identify the palliative phase and what difficulties they face.
METHODS: Semi-structured interviews were held with ten nurses and 18 physicians working at seven hospitals in the Netherlands. Data was analysed using thematic analysis.
RESULTS: Nurses and physicians feel insecure about how to define the palliative phase and differentiate between an acute and extended phase. Great variation existed in what life expectancy is attributed to each phase. A variety of ways to identify the palliative phase were described: 1) Prognostication. 2) Treatment trade-off. 3) Assessment of patients' preferences and needs. 4) Interprofessional collaboration. Professionals base prognostication on their experience but also search for clinical indicators. When benefits of treatment no longer outweigh the negatives, this was considered an, albeit late, identification point. To start a conversation on a patients' palliative care needs was found to be difficult. Therefore, some respondents wait for patients to vocalize preferences themselves. Many professionals rely on interprofessional collaboration for identification, however uncertainty exist about responsibilities. Difficulties in identification occurred because of variance in definitions, unpredictability of non-oncological diseases, focus on treatment and difficulties in communication and collaboration.
CONCLUSION: These results provide insight into the challenges and difficulties hospital-based professionals experience in timely identification of patients with palliative care needs.
PURPOSE: Despite clear benefits of early integration of palliative care (PC) and oncology, concerns remain about negative perceptions of PC. Our aim was to explore current knowledge and perceptions of PC in cancer patients.
METHODS: We conducted a prospective, cross-sectional survey. A 16-item questionnaire was distributed to all cancer patients (N=103) upon admission to the oncology ward of an Australian tertiary academic hospital. Chi-squared test was used to examine for significant factors related to patients' perceptions.
RESULTS: Ninety-six patients (93%) completed the questionnaire; 76% had metastatic cancer. We explored the following domains: Experience and knowledge: 76% had heard of PC; 21% had received PC. Self-rated PC knowledge was varied. Forty-five percent believed that PC was only associated with EOLC; those more likely to disagree had received PC services (p=0.039). Integration of PC and oncology: Majority believed that they could receive oncology care (86%) and anti-cancer treatment (81%) whilst receiving PC. Those who had heard of PC and with better self-rated knowledge were more likely to believe that they could receive concurrent anti-cancer treatment (p=0.005, p=0.045, respectively). Feelings: 77% felt comforted with PC involvement; this was significantly associated with older age (p=0.047) and understanding that oncology (p<0.005) and anti-cancer treatment (p=0.013) could continue. However, some felt frightened (40%) and hopeless (29%) about referral to PC. Fifty percent felt more comfortable with referral to 'supportive care' services (versus PC).
CONCLUSIONS: Our survey demonstrates reasonable understanding and relatively positive feelings about PC, associated with experience and knowledge. Nonetheless, there is ongoing need for better patient and public education about PC.