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.
Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance caregivers' experiences of end-of-life (EoL) cancer care and bereavement outcomes.
Objective: To explore the effects of the Values and Options in Cancer Care intervention on caregivers' experiences of EoL care and bereavement outcomes.
Design: We developed a brief behavioral intervention to improve communication among oncologists, patients with advanced cancer, and their personal caregivers. The intervention was designed to help patients/caregivers ask questions, express concerns, and help oncologists respond effectively. We randomly assigned oncologists (and their patients/caregivers) to the intervention or usual care.
Setting/Subjects: Medical oncologists in NY and CA; patients/personal caregivers with advanced cancer.
Measurements: Two months after the patient's death, caregivers completed three instruments assessing their experiences of EoL care. Seven months after the patient's death, caregivers completed the Prolonged Grief Disorder-13 (PG-13; primary prespecified outcome), the Purpose-in-Life scale, and scales assessing mental health function, depression, and anxiety.
Results: The intervention did not significantly improve caregivers' scores on the PG-13 (p = 0.21), mental health function, depression, or anxiety, but it did improve purpose-in-life scores (p = 0.018). Cohen's d (95% confidence interval) for all three experiences of EoL care outcomes were promising, ranging from 0.22 (-0.19 to 0.63) to 0.39 (-0.07 to 0.86) although none was statistically significant.
Conclusion: Preliminary findings show promise that scalable interventions in cancer care settings may improve caregiver experiences with cancer care and some bereavement outcomes.
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.
Background: The family members of terminally ill patients are often requested to make difficult surrogate decisions during palliative care. This study sought to clarify the appropriate communication style for physicians as perceived by family members confronting difficult surrogate decision-making.
Methods: This experimental psychological study used scripted videos. In the videos, the physician described treatment options including continuous deep sedation to the family members of patients with cancer and terminal delirium using an autonomous or paternalistic style. Medical professionals with clinical experience in oncology were randomly assigned to either group viewing the videos. The primary outcomes were physician compassion, decisional conflict and emotion scores. We also evaluated the communication style preference.
Results: In total, 251 participants completed this study. Although participants in both groups reported high physician compassion, participants in the autonomous style group reported lower compassion scores (reflecting higher physician compassion) (mean 15.0 vs. 17.3, P = 0.050), lower decisional conflicts scores (51.1 vs. 56.8, P = 0.002) and comparable emotions compared with those in the paternalistic style group. Seventy-six percent of participants preferred the autonomous style.
Conclusions: Regarding difficult surrogate decision-making, the autonomous style might be more appropriate than the paternalistic style. However, various factors, such as family members' communication style preferences, family members' values, physician-family relationships and ethnic cultures, should be considered.
Management of patients with terminal brain disorders can be medically, socially, and ethically complex. Although a growing number of feasible treatment options may exist, there are times when further treatment can no longer meaningfully improve either quality or length of life. Clinicians and patients should discuss goals of care while patients are capable of making their own decisions. However, because such discussions can be challenging, they are often postponed. These discussions are then conducted with patients' health care proxies after patients lose the capacity to make their own decisions. Disagreements may arise when a patient's surrogate desires continued aggressive interventions that are either biologically futile (incapable of producing the intended physiologic result) or potentially inappropriate (potentially capable of producing the patient's intended effect but in conflict with the medical team's ethical principles). This article explores best practices in addressing these types of conflicts in the critical care unit, but these concepts also broadly apply to other sites of care.
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting.
OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants.
METHODS: Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses.
RESULTS: We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care.
CONCLUSIONS: Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.
OBJECTIVES: The objectives of this systematic review were the following: (i) to describe whether culturally sensitive communication is used by clinicians (nurses and physicians) when communicating with patients and families at the end-of-life in the intensive care unit and (ii) to evaluate the impact of culturally sensitive communication at the end-of-life. The systematic review question was how is culturally sensitive communication used by clinicians when communicating with patients and families at the end-of-life in the intensive care unit?
DATA SOURCES: A search of CINAHL, MEDLINE, Embase, and PsycINFO databases identified all peer-reviewed research evidence published in English between January 1994 and November 2017. Two authors independently assessed articles for inclusion. From the 124 articles resulting from the search, nine were included in this systematic review.
REVIEW METHODS: Articles were independently assessed for quality by two authors using Caldwell et al.'s framework to critique health research. The data available in this systematic review were heterogeneous, with varied study designs and outcome measures, making the data unsuitable for meta-analysis. The most appropriate method for data synthesis for this systematic review was narrative synthesis.
RESULTS: From the narrative synthesis, two major themes emerged: communication barriers and cultural and personal influences on culturally sensitive communication. Communication barriers were identified in eight studies, influencing the timing and quality of culturally sensitive communication at the end-of-life. Cultural and personal influences on communication at the end-of-life was present in eight studies.
CONCLUSIONS: The findings of this systematic review show that clinicians lack the knowledge to enable effective interaction with culturally diverse patients and families at the end-of-life.
OBJECTIVE: To consider whether and how family members and clinicians discuss end of life during paediatric palliative care consultations.
METHODS: Nine naturally occurring paediatric palliative care consultations were video recorded and analysed using conversation analytic methods.
ANALYSIS: Focusing on three consultations in which end of life was treated as a certain outcome, analysis explored ways in which end of life was made either implicit or explicit within these consultations. Our analysis suggests that end of life was made explicit when: 1) ancillary to the current focus of discussion, 2) in relation to someone else's child, or 3) specifically relevant to the local context of the discussion. More commonly, in all other instances in the data, end of life was made implicit during discussions relating to this matter.
CONCLUSION: This preliminary research indicates that the local context of a conversation can influence how end of life is mentioned and discussed.
PRACTICE IMPLICATIONS: Clinicians often are encouraged to promote honest and 'open' discussions about end of life. Our findings show that it is not necessary to explicitly mention end of life in order to discuss it.
OBJECTIVES: (1) Compare family decision-makers' perceptions of quality of communication with nursing home (NH) staff (nurses and social workers) and clinicians (physicians and other advanced practitioners) for persons with advanced dementia; (2) determine the extent to which characteristics of NH residents and family decision-makers are associated with those perceptions.
DESIGN: Secondary analysis of baseline data from a cluster randomized trial of the Goals of Care intervention.
SETTING: Twenty-two NHs in North Carolina.
PARTICIPANTS: Family decision-makers of NH residents with advanced dementia (n = 302).
MEASUREMENTS: During the baseline interviews, family decision-makers rated the quality of general communication and communication specific to end-of-life care using the Quality of Communication Questionnaire (QoC). QoC item scores ranged from 0 to 10, with higher scores indicating better quality of communication. Linear models were used to compare QoC by NH provider type, and to test for associations of QoC with resident and family characteristics.
RESULTS: Family decision-makers rated the QoC with NH staff higher than NH clinicians, including average overall QoC scores (5.5 [1.7] vs 3.7 [3.0], P < .001), general communication subscale scores (8.4 [1.7] vs 5.6 [4.3], P < .001), and end-of-life communication subscale scores (3.0 [2.3] vs 2.0 [2.5], P < .001). Low scores reflected failure to communicate about many aspects of care, particularly end-of-life care. QoC scores were higher with later-stage dementia, but were not associated with the age, gender, race, relationship to the resident, or educational attainment of family decision-makers.
CONCLUSION: Although family decision-makers for persons with advanced dementia rated quality communication with NH staff higher than that with clinicians, they reported poor quality end-of-life communication for both staff and clinicians. Clinicians simply did not perform many communication behaviors that contribute to high-quality end-of-life communication. These omissions suggest opportunities to clarify and improve interdisciplinary roles in end-of-life communication for residents with advanced dementia.
An important consideration in the quality of end-of-life care is whether the patient’s place of death matches his or her hopes. We aimed to identify topics related to patients’ home death by comparing the occurrence frequency of topics explained by doctors for family caregivers between the home death cases and the hospital death cases. The method of integrating qualitative and quantitative data was adopted in this study. Primary participants were 24 home doctors who specialized home medical care. Enrolled 18 patients received periodical medical care by cooperated doctors, understood their own health situation, and lived with family caregivers. Doctors recorded all their speech during every visit with voice-recorder until the patient died at home or was re-hospitalized. Doctors’ speech was transcribed and converted to the number of occurrences based on number of visits. The occurrence frequency was compared with a 2 test (Yates’ correction). Speaking records of 227 visits to 18 patients by doctors were collected. Finally, 16 patients died at home and two died at hospital. We measured the occurrence frequency of topics during maximum 26 visits on 16 home death cases and maximum 13 visits on two hospital death cases. The topics of patients’ death, helping daily burden using public insurance, and financial application were more frequently appeared with home death cases than hospital death cases. In conclusion, doctors should explain to family caregivers the topics of patients’ death process and specific measures or procedures for reduction in care burden.
OBJECTIVES: Older patients with advanced cancer often have age-related health issues (e.g., memory impairment) that influence their cancer treatment decisions. Communication about these age-related concerns can potentially lead to further assessment and subsequent clinical interventions to improve treatment decision-making and patients' quality of life. Yet, little is known about the communication of age-related concerns between oncologists, patients, and caregivers.
MATERIALS AND METHODS: This study is a secondary analysis of data from the Values and Options in Cancer Care (VOICE) study. Audio-recorded and transcribed outpatient clinical oncology encounters with 37 patients with advanced cancer =60 years of age were content-analyzed. Two trained coders used a structured coding scheme based on pre-specified geriatric assessment (GA) domains to examine the transcripts for the frequency and quality of communication about age-related concerns. Atlas.ti version 6 was used for all analyses.
RESULTS: The median age of the patients was 66 years (range = 60–90 years); patients were mostly female (26/37), married (22/37), and White (36/37). Out of 37 audio-recorded visits, 31 had at least one mention of an age-related concern with a total of 70 mentions. Oncologists initiated communication about age-related concerns half of the time (53%). When age-related concerns were mentioned, half of the time (50%) the oncologist did not implement further evidence-based interventions to address the age-related concern (e.g., conduct a cognitive screen for a memory concern).
CONCLUSION: Interventions are needed to improve the frequency and quality of the communication about age-related concerns to improve the care of older adults with cancer.
Objective: To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists.
Design: Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously.
Results: In total, 186 paediatric neurologists were analysed. If the patient’s prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as ‘do not attempt resuscitation’ orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients’ families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients’ families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient’s prognosis was >1 year.
Conclusion: About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
OBJECTIVE: To identify predictors of participation of patients with advanced cancer in clinical encounters with oncologists and to assess the impact of patient and caregiver participation on perceptions of physician support.
METHODS: This is a secondary data analysis from the Values and Options in Cancer Care (VOICE) study, a cluster randomized clinical trial of a patient-centered communication intervention. Patients and caregivers completed pre- and post-visit health and communication measures. Audio recorded patient-caregiver (when present)-physician encounters were coded for active patient/caregiver participation behaviors (e.g., question asking, expressing concern) and for physicians' facilitative communication (e.g., partnership-building, support). Mixed linear regression models were used to identify patient, physician, and situational factors predicting patient and patient plus caregiver communication behaviors and post-visit outcomes.
RESULTS: Physician partnership building predicted greater expressions of concern and more assertive responses from patients and patient-caregiver pairs. Patients' perceptions of greater connectedness with their physician predicted fewer patient expressions of concern. Patient perceptions of physician respect for their autonomy was lower among patients accompanied by caregivers. Caregiver perceptions of physician respect for patient autonomy decreased with increasing patient age and varied by site.
CONCLUSIONS: In advanced cancer care, patient and caregiver communication is affected by ecological factors within their consultations. Physicians can support greater patient participation in clinical encounters through facilitative communication such as partnership-building and supportive talk. The presence of a caregiver complicates this environment, but partnership building techniques may help promote patient and caregiver participation during these visits.
Chronic obstructive pulmonary disease is progressive and in its advanced stage is associated with major disability. Previous studies suggest that patients with this disease receive little palliative care, even in very advanced stages. Given this, our objectives were to describe the clinical practice of Spanish pulmonologists in the care of patients with end-stage chronic obstructive pulmonary disease, to identify potential barriers to implementing palliative care in these patients and to correlate these responses with doctor's years of experience. A link to an online survey was sent to pulmonologists on (a) symptom management, (b) structure of their department and collaboration with other services, (c) specialized medical training in palliative care, (d) communication with patients and their families, and (e) limiting barriers identified in the management of these patients. A total of 387 responses were received. The majority used opioids to treat dyspnea (52.9%) or pain (54.2%) and many treated anxiety/depression (41%). Around half of the respondents had no established routines in their departments to offer palliative care to patients with chronic obstructive pulmonary disease. There was little communication with end-of-life patients and their families on disease course, mainly associated with a lack of medical training (83% of cases) and changes in patient wishes regarding care through the disease course (81%). In our setting, communication with end-of-life patients with chronic obstructive pulmonary disease is poor. The key challenges identified are insufficient medical training and changing desires of patients. No substantial differences in attitude were found as a function of experience.
Objective: Deaths from chronic illness are often preceded by a potentially life-shortening end-of-life decision (ELD). Involving family in these ELDs may have psychosocial benefits for them and the dying person. This study aims to examine how often ELDs are discussed with relatives of the dying person and which characteristics determine their involvement in those ELDs.
Methods: A questionnaire survey was conducted in 2013 among physicians attending a large, stratified and representative sample of deaths (n = 6188) in Flanders.
Results: In 72.3% of ELDs preceding death, family of the dying person were involved.
Discussion: of an ELD with family members was more likely when the decision was also discussed with the dying person, the ELD was made with the explicit intention to shorten life, specialized palliative care was provided or death occurred in an ICU.
Conclusions: Involving family in end-of-life decision making appears to be related to the type of formal care services involved, communication with the dying person and the motives behind the decision.
Practice implications: Our findings suggest a need to further expand a palliative care approach with a focus on both the dying person and their family within and across a variety of health care services.