La découverte d’une anomalie fœtale sévère in utero peut conduire à une décision d’interruption médicale de grossesse (IMG) et aussi à la prise en charge palliative de l’enfant à la naissance. Dans ce contexte, une pratique interdisciplinaire s’est rapidement imposée. La rencontre des parents et du pédiatre en période prénatale permet d’expliquer le retentissement de la pathologie sur un futur enfant, et ce quel que soit le choix final par rapport à la grossesse. Dans le contexte d’une prise en charge palliative à la naissance, cela permet d’anticiper cette prise en charge particulière en insistant sur la valeur du temps de vie et de la rencontre. Les équipes obstétricales et néonatales peuvent écouter les attentes des futurs parents et leur faire des propositions en leur laissant le temps de la réflexion. L’anticipation commune des interactions entre les décisions obstétricales et pédiatriques permet de viser une cohérence du sens donné à ce parcours au cours duquel des équipes différentes doivent se succéder auprès des parents et de l’enfant dans une démarche néanmoins commune.
End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members' experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians' compassionate caring for both patients and families through the "little things" or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient's death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient's death. Most importantly, the notion that ACP as a social process may be a "gift" to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.
BACKGROUND: Advance care planning is not well implemented in Belgian hospital practice. In order to obtain successful implementation, implementation theory states that the adopters should be involved in the implementation process. This information can serve as a basis for creating better implementation strategies.
AIM: For this study, we asked hospitalized palliative patients and their families what they experienced as good advance care planning.
METHODS: Twenty-nine interviews were taken from patients and families, following the Tape Assisted Recall procedure of Elliot. These interviews were analyzed using content analysis based on grounded theory. To improve reliability, 3 independent external auditors audited the analysis.
RESULTS: Results show that hospitalized palliative patients and families want to have advance care planning communication about treatment and care throughout their disease and about different aspects: social, psychological, physical, practical, and medical. They prefer to have these conversations with their supervising physician. They report 4 important goals of advance care planning communication: establishing a trustful relationship with the physician, in which they feel the involvement of the physician; giving and receiving relevant information for the decision process, making a personal decision about which treatment and care are preferred; and finding consensus between the preferred decision of the physician, the patient and the family concerning the treatment and care policy.
CONCLUSION: This study can contribute to advance care planning implementation in hospital practice because it gives in insight into which elements in advance care planning patients and families experience as necessary and when advance care planning is necessary to them.
In a field that strives to care for patients and families together, what can palliative care clinicians do when patients' families are physically absent? The Covid-19 pandemic has put both literal and figurative walls between health care professionals and families. How health care workers respond to these disconnections might have a lasting impact on patients, on families, and on our practice. Recently, I saw this in the case of a patient our palliative care team was consulted to see. Mr. B was minimally responsive and dying from multisystem organ failure of unclear etiology. As in other cases during this pandemic, our team became a facilitator of interaction between the patient and the physically absent family, seeing an intimacy we normally would not, in this case, by being present while our intern held the phone to Mr. B's ear for an end-of-life call from his wife, son, and daughter. Such moments force us clinicians to be even more present for our families and patients, and they allow us to bear witness to the strength and sadness and love that we might otherwise miss.
Introduction: Communication is considered a key skill for physicians globally and has formed a central part of medical curricula since the WHO identified it as a key attribute of the ‘5-star doctor’. Communication of poor prognosis to patients and caregivers is particularly challenging, yet an important example of physicians’ clinical communication, and a priority within palliative care research. Knowledge is scarce regarding the different positions physicians adopt during poor prognosis communication, especially in sub-Saharan countries.
Methods: This qualitative study took place at the Cape Coast Teaching Hospital in Ghana’s Central Region. Physicians in the internal medicine department, with experience in communicating poor prognosis to patients and families on a weekly basis were purposively sampled. Based on the concept of information power, a maximum variation of participants, in terms of age, sex, seniority and experience was achieved after conducting 10 semistructured interviews in March 2019. Positioning theory was used as a theoretical lens to inform study design. The data were analysed through a constructivist thematic analysis approach.
Results: Physicians adopted six positions, considered as six different themes, during their communication of poor prognosis: clinical expert, educator, counsellor, communicator, protector and mentor. Physicians’ choice of position was fluid, guided by local context and wider health system factors. Physicians’ desire to communicate with patients and families in a way that met their needs highlighted three key challenges for communication of poor prognosis: linguistic difficulties, pluralistic health beliefs and the role of family. These challenges presented ethical complexities in relation to autonomy and non-maleficence.
Conclusion: Context is key to physicians’ communication of poor prognosis. Communication of poor prognosis is multifaceted, complex and unpredictable. Physicians’ communication training should be developed to emphasise contextual circumstances and physician support, and international policy models on physicians’ roles developed to include a greater focus on social accountability.
Early in the COVID-19 pandemic, I got a call from an internal medicine resident for a new palliative care consult. The resident was at a loss; she did not know how to advise the patient's family about her prognosis. Should she place a feeding tube in this patient who, recovering from COVID-19, now could not wake up?
L'entretien entre un professionnel de santé et un patient ou son proche est à la fois le coeur et l'outil de la relation.
Si un échange peut soutenir les personnes, la seule présence du clinicien ne suffit pas, pas plus que la simple conversation.
Pour que l'entretien ait valeur d'acte thérapeutique, il importe que le professionnel adopte une écoute et une attitude spécifiques afin de favoriser l'expression du patient ou de son proche.
Les auteurs, médecins, soignants, psychologues cliniciens, ne livrent pas des trames d'entretiens valables en toutes circonstances, mais des approches applicables à la singularité de chacun.
Ils partagent la richesse de leur pratique quotidienne d'entretiens, qu'ils exercent dans des services de réanimation, de médecine, ou dans le champ psychosocial.
Ils détaillent la diversité de leurs rencontres avec des patients, leur entourage ou toute personne en besoin d'aide et de soutien, que ce soit dans le cadre d'une consultation dédiée ou de façon plus informelle.
Les situations cliniques abordées permettent de saisir les enjeux de l'annonce concernant une évolution défavorable en réanimation, la limitation ou l'arrêt de thérapeutiques actives, le prélèvement d'organes, ou la nécessité d'une dialyse.
Les psychologues sont aussi conduits à intervenir dans des situations de soutien à la parentalité, face à des personnes âgées, en fin de vie, migrantes, des victimes d'abus sexuel, etc.
Cet ouvrage fournit à l'ensemble des professionnels de la santé des repères pour veiller à ce que l'entretien soit un acte thérapeutique.
Il s'agit de contribuer à une avancée vers un mieux-être du patient ou de ses proches, qui vivent des expériences générant des émotions intenses.
PURPOSE: The quality of the relationship between oncologists and cancer patients has been associated with caregiver bereavement outcomes, but no studies have examined whether the perceived quality of the relationship between cancer caregivers and oncologists is associated with caregiver experiences of end-of-life care or psychological adjustment after the patient's death.
METHODS: We conducted secondary analyses of data collected in the Values and Options in Cancer Care (VOICE) study, a randomized controlled trial of an intervention that improved communication between oncologists and patients/caregivers (n = 204 dyads). At study entry, we assessed caregivers' experiences with the oncologist using four items from the Human Connection Scale. Following patients' deaths, we assessed bereaved caregivers' experiences with end-of-life cancer care (Quality of Death; Peace, Equanimity, and Acceptance in the Cancer Experience [PEACE]; Caregiver Evaluation of the Quality of End-of-Life Care [CEQUEL]; and modified Decision Regret scales) and psychological adjustment (Prolonged Grief Disorder-13 and Purpose in Life scales). We conducted multivariable regressions examining prospective associations between caregiver experiences with the oncologist at study entry and outcome variables.
RESULTS: Data were collected from 105 caregivers of patients who died during the course of the study. Positive experience with the oncologist was prospectively associated with better experiences of end-of-life care, as reflected in better quality of death (estimate = 0.33, SE = 0.14, p = 0.02), PEACE (estimate = 0.11, SE = 0.05, p = 0.04), and decisional regret (estimate = - 0.16, SE = 0.06, p = 0.01). Caregivers' experience with the oncologist was not significantly associated with indicators of psychological adjustment.
CONCLUSION: Caregivers' early experiences with oncologists may affect their experiences of the patient's end-of-life care.
BACKGROUND: Advance care planning (ACP) is not well implemented in hospital. Implementation theory stresses the importance of knowing what hospitalised palliative patients and their families experience as barriers or as facilitators in the uptake of ACP with their treating physician.
AIMS: This study aimed to gain an in-depth understanding of what hospitalised palliative patients and their families experienced as barriers or facilitators for having ACP conversations.
METHODS: We used a tape-assisted recall procedure to conduct 29 videotaped interviews with hospitalised patients and their families. We used content analysis based on grounded theory principles.
RESULTS: Four major fields of tension were discovered: not knowing what to expect from the treating physician; not being sure the treating physician can be a trusted partner; daring to speak about ACP; and staying loyal to one's own wishes.
CONCLUSIONS: Patients and families need physicians who are accessible and can be trusted ACP partners throughout the disease process.
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.
BACKGROUND: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed.
OBJECTIVE: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care.
DESIGN: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time.
RESULTS: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD's physicians (25% in 2012 vs 45% in 2018; P = .027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD's prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P = .015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P = .39) felt that they were knowledgeable about PC.
CONCLUSIONS: Prognostic discussions between caregivers of PwD and the PwD's physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children.
METHODS: Semistructured interviews were conducted among caregivers of terminally ill children. Participation was voluntary and confidential. The institutional review board approved the protocol. Transcripts were read and coded by 2 authors using inductive, concurrent analysis to reach thematic saturation and generate common themes.
RESULTS: Nine interviews were completed, discussing the care of 10 children. Caregivers described decision-making as impacted by their relationships with medical providers of 2 distinct types-trusting and nontrusting. Trusting relationships were notable for a longitudinal relationship with medical staff who empowered caregivers and treated the patient primarily as a child. Nontrusting relationships were noted when the medical team objectified their child as a "patient" and appeared to withhold information. Also, nontrusting relationships occurred when caregivers felt frustration with needing to educate health-care providers about their child's illness.
CONCLUSION: Decision-making by caregivers of terminally ill children is complex, and supporting families in this process is a critical role of all medical providers. A trusting relationship with medical team members was identified as an effective tool for well-supported decision-making, which can potentially alleviate the suffering of the child and distress of the caregivers during this emotionally charged time.
Context: Families are known to be involved in assisted dying and their involvement can be influenced by many factors.
Objectives: To explore how Swiss families interact with health care professionals and right-to-die associations regarding assisted suicide and their choices around disclosure.
Methods: A secondary data analysis on a cross-sectional qualitative interview study conducted in the Italian- and French-speaking parts of Switzerland was conducted. Interviews with 28 bereaved family members were analyzed using framework analysis.
Results: Two main themes were identified: (1) Interactions with physicians and right-to-die associations. (2) Choices about disclosing their experiences. In general, families believed that assisted suicide is a private matter, to be pursued mainly outside the medical field and involved physicians only when necessary. Families appeared to deliberately limit interaction with physicians and to be more comfortable interacting with the right-to-die associations. Some participants presumed a clear choice between assisted suicide or palliative care. Disclosing to others the decision, and preparation of assisted suicide emerged to be an important emotional burden for families. Some family members preferred to restrict disclosure before and after assisted suicide, by sometimes not informing other family members until the final days.
Conclusions : In Switzerland, there is limited interaction between families and health care professionals concerning assisted suicide decisions, whereas families reported more open interactions with right-to-die associations. It is recommended that the needs of families should be reflected in health policies, taking into consideration the different contexts where assisted dying is permitted.
BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described.
AIM: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict.
DESIGN: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods.
SETTING/PARTICIPANTS: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children.
RESULTS: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make-or be part of-life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust.
CONCLUSION: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.
An accurate prognosis about how long a terminally ill patient has left to live, when disclosed sensitively in open discussions, can facilitate patient-centred care and shared decision making. In addition, several guidelines, policies and funding streams rely, to some extent, on a clinician estimated prognosis. However, clinician predictions alone have been shown to be unreliable and over-optimistic. The factors underlying clinicians' prognostic decisions (particularly at the very end of life) are beginning to be elucidated. As an alternative to clinicians' subjective estimates, a number of prognostic algorithms and scores have been developed and validated, but only a few have consistently shown superiority to clinician predictions. Therefore, an element of uncertainty remains and this needs to be acknowledged when having conversations with patients and their families. Guidelines are available to advise clinicians about how to prepare for, participate in and record prognostic conversations.
Cet ouvrage présente le rôle d'accompagnant de malades en fin de vie. Il explore tous les aspects de la relation complexe et bienveillante qui s'instaure entre le malade et son entourage médical et familial.
Objectives: Little is known about how clinicians perceive prognostic uncertainty. Our study objective was to identify factors that influence how prognostic uncertainty is viewed by physicians, as it relates to their communications with families.
Design: Thirty semi-structured interviews with qualitative content analysis (9 surgeons, 16 intensivists, 3 nurse practitioners, and 2 ?other? clinicians). We analyzed interviews using qualitative description with constant comparative techniques.
Setting: Open medical, surgical, neurosurgical, and cardiovascular intensive care units (ICUs) in a 900-bed academic, tertiary Houston hospital.
Results: We identified 2 main factors that influence how clinicians perceive prognostic uncertainty and their perceptions about whether and why they communicate prognostic uncertainties to families: (1) Communicating Uncertainty to "Soften the Blow"; and (2) Communicating Uncertainty in Response to Clinicians' Interpretations of Surrogate Decision Makers' Perceptions of Prognostic Uncertainty. We also identified several subthemes.
Conclusions: Clinician'family interactions influence how clinicians perceive prognostic uncertainty in their communications with patients or families. We discuss ethical and clinical implications of our findings.
Effective communication between clinicians, patients, and families at end of life is associated with better clinical outcomes. A large body of literature describes the key skills needed for effective communication. We believe that clinicians could also benefit from communication skills more commonly associated with business or law negotiations. We will demonstrate via analogy (i.e. buying a house) how four key business/law negotiation techniques – 1. Determine your Reservation and Aspiration Value; 2. Separate People from their Positions; 3. Separate Positions from Interests; and 4. Logrolling of Interests – can be applied to a difficult family meeting in a home hospice patient.
Objectif: L’article documente le vécu et les représentations sous-jacentes aux soins cliniques pour comprendre le suivi des protocoles ainsi que l’adaptation des soignés et leurs familles.
Matériel et méthodes: Quatre études de cas et 12 entretiens avec les soignants dont huit entretiens avec le personnel au niveau clinique et quatre entretiens avec des acteurs de soins en dehors de la biomédecine ont été menés. Pour l’intelligibilité de notre propos, l’approche constructiviste s’est avérée la mieux appropriée.
Résultats: Au début de toute maladie les familles s’en font une représentation au travers des modèles explicatifs de leurs sociocultures et leurs propres expériences qui oscillent sur des pôles naturaliste et spiritualiste. Par conséquent, le recours à plusieurs avis médicaux est l’attitude qui s’en dégage. Au Cameroun, l’éducation thérapeutique des patients qui permet de socialiser les soignés et leurs familles aux situations cliniques est davantage un échange informatif dépendant des dimensions affectives, cognitives ou conatives de la relation soignant/soigné. Elle ne devient efficiente qu’au moment où l’éducation culturelle du thérapeute lui permet de desceller les non-dits et les médiateurs de cette relation, afin d’établir des échanges négociés, partagés et mutuellement compris.
Conclusion: La maîtrise et le suivi assidu des protocoles thérapeutiques dans les soins palliatifs pédiatriques en Afrique subsaharienne interpellent le rôle du médecin qui sans être un spécialiste des cultures, se doit de ne pas faire fi des médecines parallèles qui sont à la portée de leurs patients et leurs familles et de collaborer avec eux dans les prises de décisions liées à leurs orientations thérapeutiques.
Background: Providing appropriate support and care for end-of-life patients and their relatives is a major concern and a daily responsibility for intensivists. Bereaved relatives of non-surviving patients in intensive care units (ICUs) often suffer from prolonged grief, posttraumatic stress disorder, anxiety, and depression. A physician-driven intervention, consisting of three meetings with the family, might reduce the post-ICU burden of bereaved family members 6 month after death. The patient’s nurse is actively involved at each step. We hypothesize that this strategy will improve communication in the end-of-life setting and thus, should reduce the post-ICU burden for family members, specifically the development of prolonged grief 6 months after the death.
Methods/design: The COSMIC-EOL trial is a prospective, multicenter, cluster randomized controlled trial in which centers are allocated to two parallel arms: (1) intervention centers where relatives benefit from three-step physician-driven support during the dying and death process and (2) control centers where, during the dying and death process, relatives receive the standard of care practice. Each of the 36 participating centers will include 25 relatives of patients with a length of stay =2 days. Participating relatives will be followed up by phone at 1, 3, and 6 months after the patient’s death to complete questionnaires permitting evaluation of their post-ICU burden. The main outcome is prolonged grief measured 6 months after the death using the PG-13. Other outcomes include evaluation of quality of dying, quality of communication, anxiety, depression, and post-traumatic stress. The estimated duration of the study is 36 months.
Discussion: The results of the trial will provide information about the effectiveness of physician-driven support for relatives of patients dying in an ICU. The study is expected to demonstrate a decrease in the ICU burden for bereaved relatives who benefitted from this intervention.
Trial Registration: ClinicalTrials.gov, NCT02955992. Registered on November 3rd 2016.