Depuis le premier plan Cancer 2003-2007 issue de la mission interministérielle pour la lutte contre le cancer, le médecin appuie sa démarche de prise en charge sur la mesure 40, le dispositif d’annonce. Néanmoins, les modalités d’annonce de l’arrêt des traitements spécifiques ne sont pas clairement spécifiées comme elles peuvent l’être en réanimation médicale ou en oncologie pédiatrique.
Nous avons mené une étude sur la base d’entretiens semi-directifs et dont les objectifs étaient de rechercher, dans différents domaines et dimensions, les éléments constitutifs du vécu des oncologues libéraux à cette annonce. Pour créer notre guide d'entretien, nous avons construit un protocole de validation puis nous avons interrogé six médecins.
Notre enquête a permis de constater qu'il existait des similitudes dans les observations et les difficultés rencontrées lors l’élaboration de cet évènement. Il s’agit d’un tournant dans le parcours de soins signifiant l’arrêt du combat contre le cancer et l’annonce de la mort. Dès lors, la communication, les échanges prennent une place essentielle, thérapeutique. Les soins oncologiques de support s’intensifient, les soins palliatifs se précisent, le travail en équipe s’organise à travers la multidisciplinarité. Le médecin s’expose d’avantage et plus profondément dans la dimension psychique et psychologique.
Ce travail a permis de soulever des pistes de réflexion sur les préconisations à promouvoir : la démarche médicale dans les situations de limitations et d’arrêt de traitements, l’intégration du vécu psychique des intervenants et des personnes concernées, la conception de la vérité des évènements et de leur énonciation.
Hélène Mauri, infirmière et photographe, a demandé à des personnes vivant avec une maladie grave évolutive ou en fin de vie quelle serait la photographie qu’elles aimeraient voir, avoir. Nous avons sûrement tous un endroit privilégié dans notre vie, une personne, un objet peut-être. Elles ont la liberté de demander n’importe quelle photographie (paysage, portrait...). Suite à cette demande, Hélène Mauri leur propose d’aller réaliser cette photographie quelle qu’elle soit et où qu’elle soit, puis de leur en rapporter un tirage qui sera accroché au mur de leur chambre d’hôpital.Le lecteur lit dans un premier temps le souhait de la personne, et découvre à la page suivante la photographie réalisée.
En 2017, lors d'un séjour en Espagne, Camille est prise d'un mal de tête persistant. Après quelques examens, le diagnostic tombe. Il s'agit d'un accident vasculaire cérébral. Commence alors pour elle une longue rééductation qui se mêle à l'exploration des facultés perdues de son cerveau.
When the natural oral intake of food and liquids is disturbed the role of caregivers is to assist the patient in order to cover the individual's need for nutrition by nutrition therapy. Nutrition therapy is a medical intervention, which requires an indication for achieving a treatment goal and the informed consent of the competent patient. Withholding and withdrawing nutrition therapy and artificial hydration must be evaluated in specific situations (terminally ill, palliative care, dementia, aged patients) and always case by case according to the patients' cultural and spiritual needs. In the case of ethical issues or dilemmas, application of the four principles of autonomy, beneficence, non-maleficence, and justice is recommended. These principles assist the caregiver in the decision as whether to feed or not to feed. Caregivers must emphasize the right to self-determination and thus to respect the autonomy of the patient, and also the particular vulnerability of the patient suffering from or at risk of malnutrition. Caregivers must be ethically capable of responding to the nutritional needs according to the patient's will and desires even if the patient is not capable of self-determination, always looking for the best benefit to the patient and avoiding harm.
Background: Specialist palliative day care can support palliative caregiving for those living in the community with advanced disease. However, how people access specialist palliative day care and why is unclear. This study therefore aims to explore the referral experiences of patients, carers and staff in the context of a specialist palliative day care unit.
Design: Qualitative study using constant comparative analysis to explore referral experiences to a UK specialist palliative day unit through one-to-one interviews with patients (n=15), family carers (n=6) and staff (n=10) including nurses, medics and managers and focus groups with (n=3 and n=7) specialist palliative care nurses. Findings The three datasets (staff, patients and carers) provide a triangulation of perspectives captured within the core category of ‘managing referral’ and presented as six sub-themes. Staff described referral as an intuitive interaction involving ‘looking for openings’ and ‘getting people through the door’. Patients familiar with the service were persistent in ‘shouting for help’ but most regarded referral with dread, only ‘giving it a go’ following crisis. For family carers referral presented ‘time out/respite’ but also the ‘end-of-the-line’.
Conclusions: Unclear understandings of services as well as uncertain professional, patient and carers notions of candidacy influence referral to specialist palliative day care.
Le refus de soins de la part d’un patient s’exprime dans la liberté offerte à toute personne souhaitant refuser en toute conscience un soin. Ces situations interrogent les soignants à titre individuel et collectif. Ces derniers peuvent également, dans certains cas, exprimer un refus face à la réalisation d’un soin.
BACKGROUND: Despite well-documented disparities in end-of-life (EOL) care, little is known about whether patients with low health literacy (LHL) received aggressive EOL care.
OBJECTIVE: This study examined the association between health literacy (HL) and EOL care intensity among Medicare beneficiaries.
METHOD: We conducted a retrospective analysis of Medicare fee-for-service decedents who died in July-December, 2011. ZIP-code-level HL scores were estimated from the 2010-2011 Health Literacy Data Map, where a score of 225 or lower was defined as LHL. Aggressive EOL care measures included repeated hospitalizations within the last 30 days of life, no hospice enrollment within the last 6 months of life, in-hospital death, and any of above. Using hierarchical generalized linear models, we examined the association between HL and aggressive EOL care.
RESULTS: Of 649,556 decedents, the proportion of decedents who received any aggressive EOL care among those in LHL areas was 82.7%, compared to 72.7% in HHL areas. In multivariable analyses, decedents residing in LHL areas, compared to those in HHL areas, had 31% higher odds of aggressive EOL care (adjusted odds ratio [AOR] 1.31; 95% confidence interval [CI]:1.21-1.42), including higher odds of no hospice use (AOR 1.35; 95% CI: 1.27-1.44), repeated hospitalization (AOR 1.07; 95% CI: 1.01-1.14) and in-hospital death (AOR 1.21; 95% CI: 1.13-1.29).
CONCLUSION: Medicare beneficiaries who resided in LHL areas were likely to receive aggressive EOL care. Tailored efforts to improve HL and facilitate patient-provider communications in LHL areas could reduce EOL care intensity.
Lynch syndrome (LS) is a hereditary cancer syndrome characterized by an increased risk of multiple cancers, predominantly endometrial and colorectal, at a younger age (typically < 50). In prior research, high death anxiety and a lack of provider-initiated communication about advance care planning (ACP) have been shown to decrease a patient's likelihood of having advance directives. Providers often have gaps in knowledge and are uncomfortable with these conversations. We used a mixed methods approach (quantitative survey with a follow-up telephone interview) to assess knowledge, preferences, and attitudes regarding ACP in individuals with LS (n = 20). This study also assessed which ACP documents individuals already had in place and which persons (providers, family, or friends) an individual made aware of the documentation and/or preferences. These data were analyzed to determine patient preferences for who is responsible for initiating these conversations, identify motivating factors and barriers to these conversations, and determine whether the current conversations are adequate to meet the needs of this patient population. Participants recognized the importance of ACP and expressed interest in creating these documents. However, knowledge and confidence about these topics were lacking, with many participants attributing this to their young age and lack of experience. Although uncomfortable, many patients want to have ACP discussions with their providers, but frequently patients were only asked if these documents are completed with no further discussion. These findings can inform educational efforts to improve knowledge of ACP and interventional research to increase use of ACP by individuals with LS.
OBJECTIVE: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH).
METHODS: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial.
FINDINGS: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091.
CONCLUSION: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.
AIMS AND OBJECTIVES: To explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of participants to have these conversations.
BACKGROUND: Awareness about perspectives of people with dementia should decrease stigmatization and improve their quality of life. Applying palliative care principles from an early stage is important to address diverse needs and to anticipate the future. Few studies investigate perspectives of people with dementia regarding palliative care, including advance care planning.
DESIGN: Qualitative descriptive design.
METHODS: We performed in-depth interviews with 18 community-dwelling persons with dementia in South-Limburg, the Netherlands. Transcripts were analyzed using an inductive content analysis. Two authors coded the data and regularly compared coding. All authors discussed abstraction into categories and themes. We followed the COREQ reporting guidelines.
RESULTS: Five overarching themes derived from the interviews were: 1) My life still has value and meaning, 2) I am my own unique individual, 3) I place my trust in other people, 4) The future worries me, and 5) I accept and embrace what life brings.
CONCLUSIONS: Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, they primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognized as unique and worthy humans, until the end of life.
RELEVANCE TO CLINICAL PRACTICE: This study demonstrates capability and willingness of people with dementia to discuss the future and end-of-life topics. Public and professional awareness may facilitate opportunities for informal end-of-life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families.
BACKGROUND: Cultural values are crucial to the practice and impact of patient and public involvement (PPI) in research.
OBJECTIVE: To understand different PPI cultures among research teams and the impacts of PPI associated with each culture type.
DESIGN: A participatory action research design.
SETTING AND PARTICIPANTS: The setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated.
INTERVENTION: A programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12-18 months, (3) a community of practice, and (4) a qualitative evaluation.
RESULTS: We identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI.
DISCUSSION: A relationship culture appears to be long-lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks.
CONCLUSIONS: Further research remains necessary to investigate the support required by researchers to enable relationship- and task-oriented PPI cultures.
PATIENT OR PUBLIC CONTRIBUTION: Patient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects.
Purpose: Guidelines suggest that advance care planning (ACP) and goals-of-care discussions should be conducted for patients with advanced cancer early in the course of their disease. A recent audit of our health system found that these discussions were rarely being documented in the electronic medical record (EMR). We conducted a quality improvement initiative to improve rates of documentation of goals and wishes among patients with advanced cancer.
Methods: on the basis of previous analyses of this problem, we determined that provider capability and opportunity were the main barriers to conducting and documenting serious illness conversations. We implemented the serious illness care program (SICP), a systematic multicomponent intervention that has shown potential for conducting and documenting ACP discussions in two oncology clinics. Our goal was to conduct at least 24 serious illness conversations over the implementation period, with documentation of at least 95% of all conversations.
Results: The SICP was implemented in two outpatient medical oncology clinics. A total of 15 serious illness care conversations occurred and 14 (93%) of these conversations were documented in the EMR. Total rates of documentation increased between the preimplementation and implementation period (4.2%-5.4% for clinician A and 0%-7.3% for clinician B).
Conclusion: Implementation of the SICP resulted in increased rates of documentation, but the target number of conversations was not met. Further improvement cycles are required to address barriers to conducting and documenting routine serious illness conversations.
BACKGROUND: In Mainland China, advance directives (ADs) and end-of-life care for patients with tumours, especially patients with brain tumours who may have lost consciousness or the ability to speak at the early stage of their illness, have been poorly acknowledged. Thus, this study aimed to clarify the knowledge and preferences of ADs and end-of-life care in patients with brain tumours and to investigate predictors of patient preferences.
METHODS: This was a population-based cross-sectional survey that was conducted via face-to-face interviews. Information on sociodemographic factors, brain tumour illness, knowledge and preferences of the advanced decisions and end-of-life care of the patients was collected.
RESULTS: A total of 88.61% of participants had never heard of ADs, but 65.18% reported that they would like to make ADs. Knowledge of ADs, receiving surgical treatment or radiotherapy, being younger than 70 years old, being male, having educational qualifications of college or beyond, being childless, having medical insurance for nonworking or working urban residents and self-paying medical expenses were predictors of preference for making ADs. A total of 79.43% of participants wanted to discuss end-of-life arrangements with medical staff, and 63.29% of participants were willing to receive end-of-life care, even though it would not delay death. A total of 65.82% of patients with brain tumours wanted resuscitation, and as many as 45.45% of the patients thought that they did not need life support if they were in a persistent vegetative state. Brain primary tumours, being younger than 70 years old, male sex, educational qualification of junior middle school or below, having children, having new rural cooperative medical insurance and having medical expenses paid by children or spouses were predictors of choosing appropriate palliative care.
CONCLUSIONS: ADs and end-of-life care have been poorly acknowledged among patients with brain tumours in mainland China. Additional efforts should be encouraged amongst patients with primary brain tumours, those who are undergoing surgery and radiotherapy and those who have low socioeconomic status. A longitudinal and comprehensive study is encouraged to promote disease-specific ADs among Chinese patients with brain tumours.
This qualitative study employed a cross sectional focus group design to explore how older gay men living with HIV, experience, perceive, and engage with advance care planning (ACP). Seven gay men 50+, residing in Montreal, Canada, participated in a focus group that was audio-recorded, transcribed, and thematically analyzed. Findings suggested that social isolation, preoccupations with day-to-day living, and managing disclosures related to sexual orientation and HIV status created barriers to these men's capacities to think about let alone talk about future care. These findings challenge current conceptualizations of ACP, which position reflection as an individual process that precedes allocating a decision-maker and communicating care preferences. Analyses further revealed that relational connections helped create a space where ACP could occur for participants. Hence, improving the uptake of ACP amongst older gay men with HIV may require interventions that embed such discussions into broader programs aimed at building support and community.
OBJECTIVES: To investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis was conducted on all interview data relating to experiences of primary care.
SETTING: West Midlands, UK.
PARTICIPANTS: A total of 31 participants (10 children with life-limiting and life-threatening conditions and 21 family members) from 14 families.
STUDY DESIGN AND SETTING: Secondary thematic analysis of qualitative interview data from a study carried out in the West Midlands, UK.
METHOD: 41 serial interviews with 31 participants from 14 families: 10 children aged 5-18 years with life-limiting and life-threatening conditions, and 21 of their family members.
RESULTS: Three key themes emerged: (1) poor experiences of general practice cause children and families to feel isolated, (2) children and families value support from general practice, and (3) there are practical ways through which general practice has the potential to provide important aspects of care. Children and families reported benefits from fostering their relationship with their general practice in order to access important aspects of care, including the assessment and management of acute illness, chronic disease and medication reviews, and holistic support.
CONCLUSION: Children with life-limiting and life-threatening conditions and their families value the involvement of general practice in the care, alongside their paediatric specialists. Ways of developing and providing such support as part of an integrated system of care need to be developed.
Purpose: Advance care planning (ACP) is a clinical skill that can be taught. An opportunity exists to teach how to conduct ACP to clinicians not typically engaged in these conversations to increase the likelihood that patients and caregivers engage in ACP. We conducted a prospective study exploring the feasibility of a pharmacist-led ACP intervention.
Methods: We completed a prospective, single-center study from July 2015 to July 2017. We included patients of age = 18 years with incurable cancer referred to the palliative care clinic. A trained pharmacist led an ACP discussion with the patient and selected proxy. We defined feasibility as completion of = 30 pharmacist-led ACP discussions over the study period. Additionally, we defined an informed healthcare proxy as someone who understood three key end-of-life (EOL) treatment preferences: the patient's personal definition of quality of life, desired resuscitation status, and preferred location of death (in or out of the hospital). Patients were followed until the end of the study or death. For those patients who died, the pharmacist contacted the proxy for follow-up and explored satisfaction with the ACP intervention.
Results: Thirty-four patients completed the study. All selected proxies completed the intervention and were able to understand the three EOL preferences. At the time of the patient’s death (n = 20), proxies reported that 66.6% received their preferred resuscitation status and 72.2% died in their preferred location. Proxy satisfaction with the ACP process was 7.6 ± 2.5 (mean ± SD) on a 11-point Likert scale.
Conclusion: These findings indicate the potential for pharmacists to lead and engage in ACP in the outpatient setting.
BACKGROUND: Patient participation is a key foundation of advance care planning (ACP). However, a patient himself/herself may be left out from sensitive conversations such as end-of-life (EOL) care discussions. The objectives of this study were to investigate patients' participation rate in the discussion of Cardiopulmonary Resuscitation (CPR) / Do-Not-Attempt-Resuscitation (DNAR) order, and in the discussion that the patient is at his/her EOL stage (EOL disclosure), and to explore their associated factors.
METHODS: This is a retrospective chart review study. The participants were all the patients who were hospitalized and died in a university-affiliated teaching hospital (tertiary medical facility) in central Tokyo, Japan during the period from April 2018 to March 2019. The following patients were excluded: (1) cardiopulmonary arrest on arrival; (2) stillbirth; (3) under 18 years old at the time of death; and (4) refusal by their bereaved family. Presence or absence of CPR/DNAR discussion and EOL disclosure, patients' involvement in those discussions, and their associated factors were investigated.
RESULTS: CPR/DNAR discussions were observed in 336 out of the 358 patients (93.9%). However, 224 of these discussions were carried out without a patient (patient participation rate 33.3%). Male gender (odds ratio (OR) = 2.37 [95% confidence interval (CI) 1.32-4.25]), living alone (OR = 2.51 [1.34-4.71]), and 1 year or more from the date of diagnosis (OR = 1.78 [1.03-3.10]) were associated with higher patient's participation in CPR/DNAR discussions. The EOL disclosure was observed in 341 out of the 358 patients (95.3%). However, 170 of the discussions were carried out without the patient (patient participation rate 50.1%). Patients who died of cancer (OR = 2.41[1.45-4.03]) and patients without mental illness (OR=2.41 [1.11-5.25]) were more likely to participate in EOL disclosure.
CONCLUSIONS: In this clinical sample, only up to half of the patients participated in CPR/DNAR discussions and EOL disclosure. Female, living with family, a shorter period from the diagnosis, non-cancer, and mental illness presence are risk factors for lack of patients' participation in CPR/DNAR or EOL discussions. Further attempts to facilitate patients' participation, based on their preference, are warranted.
Objective: In a cluster-randomised controlled trial of early palliative care (EPC) in advanced cancer, EPC was robustly associated with increased patient satisfaction with care. The present study evaluated mediational mechanisms underlying this EPC effect, including improved physical and psychological symptoms and quality of life, as well as relationships with healthcare providers and preparation for end of life.
Method: Participants with advanced cancer (n=461) completed measures at baseline and then monthly to 4 months. Mediational analyses, using a robust bootstrapping approach, focused on 3-month and 4-month follow-up data.
Results: At 3 months, EPC decreased psychological symptoms, which resulted in greater satisfaction either directly (ßindirect effect=0.05) or through greater quality of life (ßindirect effect=0.02). At 4 months, EPC increased satisfaction through improved quality of life (ßindirect effect=0.08). Physical symptom management showed no significant mediational effects at either time point. Better relationships with healthcare providers consistently mediated the EPC effect on patient satisfaction at 3 and 4 months, directly (ßindirect effect=0.13–0.16) and through reduced psychological symptoms and/or improved quality of life (ßindirect effect=0.00–0.02). At 4 months, improved preparation for end-of-life mediated EPC effects on satisfaction by enhancing quality of life (ßindirect effect=0.01) or by reducing psychological symptoms and thereby increasing quality of life (ßindirect effect=0.02).
Conclusion: EPC increases satisfaction with care in advanced cancer by attending effectively to patients’ emotional distress and quality of life, enhancing collaborative relationships with healthcare providers, and addressing concerns about preparation for end-of-life.
Trial registration number NCT01248624
Why is the transition from "living" to "dying" not socially marked in the same way that death is marked? This question is addressed using classical anthropological theory, which highlights the significance of liminality, the transitional period during a rite of passage. Seriously ill and dying patients are subject to social vulnerabilities as they approach the end of life. Clinicians' awareness of these factors may improve their patients' care.
BACKGROUND: Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer.
METHODS: Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between key indicators and on simple correlations.
RESULTS: Up to 39% of follow-up data were missing. Results under MAR reflected that missingness was related to poorer health status. Correlations between variables, although very small, changed according to the imputation method, as well as the differences in scores by gender, indicating a certain sensitivity of the results to the violation of the MAR assumption.
CONCLUSIONS: The findings confirmed the importance of undertaking this kind of analysis in end-of-life care studies.