OBJECTIVE: To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries.
DESIGN: A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire.
SETTINGS AND PARTICIPANTS: 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland.
METHODS: The Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types.
RESULTS: The FPPFC score was the lowest in Finland (1.4 ± 0.8) and the highest in Italy (2.2 ± 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with on-site physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%).
CONCLUSION: The relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life.
IMPLICATIONS: Training in end-of-life communication to physicians providing care for LTCF residents is recommended.
BACKGROUND: Early end-of-life (EOL) discussions improve patient satisfaction, quality of care, and the cost-effectiveness of care. However, some US studies show that radiation oncologists (ROs) are unlikely to discuss EOL issues until the patients develop significant symptoms or the families initiate the discussion. There have been no prior studies describing the patterns of EOL discussions among Canadian ROs. The objectives of this study were: (I) to describe the patterns of EOL discussions among Canadian ROs; (II) to identify the barriers to EOL conversation among Canadian ROs; (III) to assess the attitudes of Canadian ROs toward Medical Assistance in Dying (MAiD).
METHODS: The 22-question online survey was distributed to the members of Canadian Association of Radiation Oncologists (CARO). Demographics, EOL discussion patterns, perception of EOL discussions, barriers, and the impact of MAiD were evaluated.
RESULTS: Sixty ROs responded out of 326. Prognosis (57%) and goals of care (58%) were routinely discussed, while advanced directive (40%) and planned site of death (12%) were not. More than 90% felt that early EOL discussions with palliative patients were important. The amount of palliative discussion training was correlated with confidence in EOL discussion (P <0.01), perceived importance of RO role in EOL (P=0.006), and the frequency of planned site of death discussion (P=0.041). The most frequently identified barriers were lack of time, uncertainty about prognosis, and concern for patient disappointment. Many ROs provided MAiD information upon request or case-by-case, but only 3% provided the information routinely.
CONCLUSIONS: Canadian ROs recognize the importance of EOL discussions, but they do not routinely incorporate advanced directive or site of death in their discussions. ROs with more palliative discussion training were more confident in EOL discussion and likely to engage in them earlier. Short structured training may improve the confidence and quality of EOL discussion. Time constraint is the number one barrier that may be alleviated by delegation of tasks and patient education tools. Discussion about MAiD is supported but not routine among Canadian ROs.
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.
Objective: Patients want to discuss spirituality more with their doctors but feel disempowered. Question prompt lists (QPLs) assist conversations. This study assessed the impact of a QPL on spirituality discussions in Palliative Care (PC).
Methods: This was a sub-study of a trial in which PC patients were randomised to either receive a QPL prior to a consultation or not, to see whether its provision influenced advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a PC physician. Consultations were recorded and transcribed. Transcriptions were analysed to examine the frequency and content of spirituality discussions. We conducted logistic regression to investigate the impact of the QPL and other predictors.
Results: 174 patients participated. Spirituality was discussed in half the consultations. Patients receiving a QPL discussed spirituality 1.38 times more than controls. This finding did not reach statistical significance. First PC consultation and being asked about their concerns by the doctor were significant predictors of a spiritual discussion.
Conclusion: Patients are more likely to discuss spirituality in their first PC consultation, and when their doctor asks them about their concerns.
Practice implications: Doctors caring for patients at the end of life should routinely raise spiritual issues.
BACKGROUND: Physicians who are more religious or spiritual may report more positive perceptions regarding the link between religious beliefs/practices and patients' psychological well-being.
METHODS:: We conducted a secondary data analysis of a 2010 national survey of US physicians from various specialties (n = 1156). Respondents answered whether the following patient behaviors had a positive or negative effect on the psychological well-being of patients at the end of life: (1) praying frequently, (2) believing in divine judgment, and (3) expecting a miraculous healing. We also asked respondents how comfortable they are talking with patients about death.
RESULTS:: Eighty-five percent of physicians believed that patients' prayer has a positive psychological impact, 51% thought that patients' belief in divine judgment has a positive psychological impact, and only 17% of physicians thought the same with patients' expectation of a miraculous healing. Opinions varied based on physicians' religious and spiritual characteristics. Furthermore, 52% of US physicians appear to feel very comfortable discussing death with patients, although end-of-life specialists, Hindu physicians, and spiritual physicians were more likely to report feeling very comfortable discussing death (adjusted odds ratio range: 1.82-3.00).
CONCLUSION:: US physicians hold divided perceptions of the psychological impact of patients' religious beliefs/practices at the end of life, although they more are likely to believe that frequent prayer has a positive psychological impact for patients. Formal training in spiritual care may significantly improve the number of religion/spirituality conversations with patients at the end of life and help doctors understand and engage patients' religious practices and beliefs.
BACKGROUND: Communication skills may be an important skill for the front-line emergency physicians.
AIM: This study aimed to investigate the effect of training in a SHARE communication course by emergency physicians on patient notification and signing of do-not-resuscitate (DNR) orders for critical patients in the emergency room.
DESIGN: From a total of 29 attending physicians in the emergency department, 19 physicians had been trained in the SHARE communication course. An observation form designed based on the SHARE training was completed by two observers who noted the communication process between physicians and patients and family members during patient notification and signing a DNR order. To assess the influence of physicians trained in a SHARE communication course on the signing of DNR orders, a propensity score-matched population was created to reduce the potential selection bias of patients and family members.
SETTING: Level 1 trauma medical center in southern Taiwan.
RESULTS: There were 145 individuals enrolled in the study, of which 93 signed the DNR order, and 52 did not sign it. Analysis from 23 matched pairs from this population revealed that significantly more family members would sign a DNR order if the physician had been trained in the SHARE communication course than when they did not receive this training (78.3% vs. 39.1%, respectively, p=0.017). The overall score of the observation form for physicians was higher in those individuals who had signed a DNR order than in those who did not sign it (29.48±3.72 vs. 26.13±3.52, respectively, p=0.003), especially when the physician had chosen a quiet environment (1.35±0.65 vs. 0.87±0.69, respectively, p=0.020), understood the patient's wishes and confirmed them (1.78±0.42 vs. 1.30±0.70, respectively, p=0.008), and expressed concern (1.48±0.79 vs. 0.96±0.77, respectively, p=0.028). In addition, a feedback survey about the feelings experienced by these physicians during the process of patient notification did not reveal a significant difference during the communication with those who had or had not signed DNR orders.
CONCLUSION: The training in a SHARE communication course can improve the communication skills of emergency physicians in patient notification and signing of DNR orders for critical patients.
OBJECTIVES: Prognostic disclosure among patients with cancer permits open informed discussion about treatment preferences and encourages advance care planning. In rare cancers such as soft tissue sarcoma, discussions regarding prognostication are challenging. Little is known about the consequences of this for patients or their preferences for such information. This qualitative study explores patient-centered accounts of the value and timing of prognostic discussions.
METHODS: 24 semistructured interviews were conducted with soft tissue sarcoma patients attending one London cancer centre: 66% female, median age 53 (range 19-82). The study was cross-sectional and participants were at different stages of the advanced disease trajectory. Interviews were digitally recorded, transcribed verbatim and analysed thematically using the framework approach.
RESULTS: All participants understood the incurable nature of advanced sarcoma. However, prognostic discussions were rare, always patient initiated and did not include known survival data, despite direct participant enquiry. Most participants did not wish to discuss prognosis at initial diagnosis but wished to be offered the opportunity to discuss this at intervals of disease progression, despite reservations it may not be helpful. Participants expected discussions to be clinician initiated. Three themes emerged to explain this position and included (1) Rarity causing prognostic uncertainty referring to patient belief that prognostication in rare cancers was less likely to be accurate than for common tumours; (2) Avoiding the negatives referring to a wish not to hear unfavourable information and (3) Physical symptoms a better prognostic indicator than 'physician guess'.
CONCLUSIONS: Although 17/24 participants preferred not to discuss prognosis at initial diagnosis, they wished to have the opportunity to revisit prognostic discussions at intervals of disease progression. This may facilitate better advance care planning and end of life care.
OBJECTIVES: We examined public reaction to the proposed Center for Medicare and Medicaid Services rule reimbursing physicians for advanced care planning (ACP) discussions with patients.
METHODS: Public comments made on regulations.gov were reviewed for relevance to ACP policy and their perceived position on ACP (ie, positive, negative and neutral). Descriptive statistics were used to quantify the results.
RESULTS: A total of 2225 comments were submitted to regulations.gov. On review, 69.0% were categorised as irrelevant; among relevant comments (n=689), 81.1% were positive, 18.6% were negative and 0.002% were neutral. Individuals submitted a greater percentage of the total comments as compared to organisations (63.5% and 36.5%, respectively).
CONCLUSIONS: The US Medicare programme is a tax financed social insurance programme that covers all patients 65 years of age and older, including 8 in 10 decedents annually, and it is the part of the US healthcare system most similar to the rest of world. There has been a trend globally towards recognising the importance of aligning patient preferences with care options, including palliative care to deal with advanced life limiting illness. However, ACP is not widely used in the USA, potentially reducing the use of palliative care. Reimbursing ACP discussions between physicians, patients and their family has the potential to have a large impact on the quality of life of persons near death, which can greatly impact public health and the comfort in dealing with our ultimate demise.
BACKGROUND: Aggressive end-of-life (EOL) care is associated with lower quality of life and greater regret about treatment decisions. Higher EOL costs are also associated with lower quality EOL care. Advance care planning and goals-of-care conversations ("EOL discussions") may influence EOL health-care utilization and costs among persons with cancer.
OBJECTIVE: To describe associations among EOL discussions, health-care utilization and place of death, and costs in persons with advanced cancer and explore variation in study measures.
METHODS: A systematic review was conducted using PubMed, Embase, and CINAHL. Twenty quantitative studies published between January 2012 and January 2019 were included.
RESULTS: End-of-life discussions are associated with lower health-care costs in the last 30 days of life (median US$1048 vs US$23482; P < .001); lower likelihood of acute care at EOL (odds ratio [(OR] ranging 0.43-0.69); lower likelihood of intensive care at EOL (ORs ranging 0.26-0.68); lower odds of chemotherapy near death (ORs 0.41, 0.57); lower odds of emergency department use and shorter length of hospital stay; greater use of hospice (ORs ranging 1.79 to 6.88); and greater likelihood of death outside the hospital. Earlier EOL discussions (30+ days before death) are more strongly associated with less aggressive care outcomes than conversations occurring near death.
CONCLUSIONS: End-of-life discussions are associated with less aggressive, less costly EOL care. Clinicians should initiate these discussions with patients having cancer earlier to better align care with preferences.
Objective Advance care planning (ACP) is widely advocated to contribute to better outcomes for patients suffering from heart failure. But clinicians appear hesitant to engage with ACP. Our aim was to identify interventions with the greatest potential to engage clinicians with ACP in heart failure.
Methods A systematic review and meta-analysis. We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO for randomised controlled trials (RCTs) from inception to January 2018. Three reviewers independently extracted data, assessed risk of bias (Cochrane risk of bias tool), the quality of evidence (GRADE) and intervention synergy according to Template for Intervention Description and Replication. ORs were calculated for pooled effects.
Results Of 14 175 articles screened, we assessed the full text of 131 studies. 13 RCTs including 3709 participants met all of the inclusion criteria. The intervention categories of patient-mediated interventions (OR 5.23; 95% CI 2.36 to 11.61), reminder systems (OR 3.65; 95% CI 1.47 to 9.04) and educational meetings (OR 2.35; 95% CI 1.29 to 4.26) demonstrated a favourable effect to engage clinicians with the completion of ACP.
Conclusion The review provides evidence from 13 published RCTs and suggests that interventions that involve patients to change clinical practice, reminder systems and educational meetings have the greatest effect in improving the implementation of ACP in heart failure.
Introduction: Collusion is frequently encountered but least studied entity in palliative care services in India. Impact of collusion is manifold and identifying it requires good communication skills. Once identified, it gives an indication for existing healthy versus developing unhealthy collusion to be dealt within families.
Objective: The objective of this study was to identify the prevalence of collusion and its clinical and psychological correlates among patients and caregivers in a palliative cancer care.
Materials and Methods: We describe systematic identification and unraveling of collusion across multiple levels in a palliative cancer care eventually drafting an algorithm to unravel the collusion. Patients and families were recruited from in-patient palliative care services after obtaining written informed consent. Qualitative interviews were conducted using collusion questionnaire, EQ5D, Visual Analog Scale, and NIMHANS psychiatric morbidity screen.
Results: Among 62 cancer families interviewed, we identified that 71% collusion exists between doctor and patient, 61.3% between doctor and caregiver, and 75.83% between patient and caregiver. Around 50% collusions were unraveled systematically. Collusion was more prevalent in patients with rapid progression of illness (<6 months), patients with poor coping skills, and preference of being interviewed alone.
Conclusion: This statistics suggests that collusion goes unnoticed in terminal illnesses and communication skills play a major role in identifying and dealing with collusion. This also unearths need to formulate interview techniques and structured assessment tools or questionnaire in palliative cancer care which are sparse.
Background: Advance directives (ADs) are seldom discussed between primary care physicians (PCPs) and their patients, especially those with noncancer diseases. The aim was to identify the factors associated with discussing AD by noncancer patients with their physicians.
Methods: This cross-sectional study was conducted in a hospital or clinic from October to December 2017. Physicians chose eligible noncancer patients aged 20 years or older to respond to an anonymous self-completed questionnaire inquiring about the objective variable "I want to discuss AD with my doctor," as well as basic characteristics, and facilitators and barriers to discussing AD identified in previous studies. The physicians responded to a survey comprising the Palliative Performance Scale (PPS) and inquiring about the disease category for each patient. Data were analyzed using binomial logistic regression analysis.
Results: A total of 270 patients (valid response rate, 79.6%) were included. Multivariate analysis identified a period of visit to the study site = 3 years (odds ratio [OR], 2.07; 95% confidence interval [CI], 1.05-4.10), physicians who are very good at taking care of patients’ disease (OR, 12.68; 95% CI, 1.12-143.22), and patients’ worry about their quality of life (QOL) in the future (OR, 2.69; 95% CI, 1.30-5.57) as facilitators for discussing AD with physicians, and PPS = 90 (OR, 0.51; 95% CI, 0.26-0.98) as a barrier.
Conclusions: Our study indicates that patients' future QOL concerns, a long period of visit to a hospital, and the presence of physical symptoms were associated with the willingness of noncancer patients to discuss AD with PCPs.
CONTEXT: Hospitalized patients with advanced cancer often face complex, preference-sensitive decisions. How clinicians and patients engage in shared decision-making during goals-of-care discussions is not well understood.
OBJECTIVE: To explore decision-making by patients and clinicians during inpatient goals-of-care discussions.
METHODS: A qualitative study of audio-recorded goals-of-care discussions between hospitalized patients with advanced cancer and their clinicians. Grounded theory was used to analyze transcripts.
RESULTS: Sixty-two patients participated in goals-of-care discussions with 51 unique clinicians. Nearly half of patients (n=30) were female and their mean age was 60.1 years (SD=12.7). A palliative care attending or fellow was present in 58 of the 62 discussions. Decisions centered on three topics: 1) disease-modifying treatments 2) hospice; and 3) code status. Clinicians' approach to decision-making included the following stages: "information exchange," "deliberation," "making a patient-centered recommendation," and "wrap-up: decisional status." Successful completion of each stage varied by the type of decision. When discussing code status, clinicians missed opportunities to engage patients in information exchange and to wrap up decisional status. In contrast, clinicians discussing disease-modifying treatments and hospice failed to integrate patient preferences. Clinicians also missed opportunities to make patient-centered recommendations when discussing treatment decisions.
CONCLUSION: Clinicians missed opportunities to facilitate shared decision-making regarding goals of care, and these missed opportunities differed by type of decision being discussed. Opportunities for clinician communication training include engagement in collaborative deliberation with patients and making patient-centered recommendations in situations of high medical uncertainty.
La fin de vie, et plus particulièrement l'euthanasie et le suicide médicalement assisté font l'objet de débats éthiques qui touchent à la fois les domaines politique, médical et juridique. Les auteures livrent leur réflexion sur l'incertitude médicale face aux demandes de morts anticipées. Après avoir décrit l'aspect législatif français sur ces questions et leur méthodologie de recherche, les auteures analysent les modalités et les motifs des demandes d'euthanasie et de suicide médicalement assisté ainsi que les différentes niveaux d'interprétation de ces demandes (désir de mort / souffrance). pour terminer, elles montrent de quelle manière la demande de hâter sa propre mort engage les patients, leurs proches et les médecins dans une temporalité particulière.
il y a une gigantesque évolution de la relation patient-soignant depuis une trentaine d'années en France. L'auteur s'appuie sur son cham de compétences, à savoir la philosophie du droit pour en parler. Il développe son propos en trois points : évolution du droit français en lien avec l'évolution de la place du patient, articulation entre responsabilité juridique des soignants et droits des malades et pour terminer statut des directives anticipées pour comprendre la nature de la volonté du patient.
This study was conducted to enhance the rate of advance care planning (ACP) conversations and documentation in a dementia specialty practice by increasing physician knowledge, attitudes, and skills. We used a pre- and postintervention paired design for physicians and 2 independent groups for patients. The ACP dementia educational program encompassed 3 objectives: (1) to understand the relevance of ACP to the dementia specialty practice, (2) to provide a framework to discuss ACP with patients and caregivers, and (3) to discuss ways to improve ACP documentation and billing in the electronic medical record. A 10-item survey was utilized pre- and posteducational intervention to assess knowledge, attitudes, and skill. The prevalence of ACP documentation was assessed through chart review 3 months pre- and postintervention. The educational intervention was associated with increased confidence in ability to discuss ACP ( P = .033), belief that ACP improves outcomes in dementia ( P = .035), knowledge about ACP Medicare billing codes and requirements ( P = .002), and belief that they have support from other personnel to implement ACP ( P = .017). In 2 independent groups of patients with dementia, documentation rates of an advance directive increased from 13.6% to 19.7% ( P = .045) and the Medical Order for Life-Sustaining Treatment (MOLST) increased from 11.0% to 19.0% ( P = .006). The MOLST documentation in 2 independent groups of patients with nondementia increased from 7.3% to 10.7% ( P = .046). Continuing efforts to initiate educational interventions are warranted to increase the effectiveness ACP documentation and future care of persons with dementia.
La décision partagée est celle que le patient prend avec son médecin. Lorsqu’il ne peut plus exprimer sa volonté, la décision est prise par ce dernier à l’issue d’une procédure collégiale. Au sein de ce dispositif, les directives anticipées sont consultées et le témoignage de la personne de confiance pris en compte, à défaut celui des proches. Complétée par la concertation au sein de l’équipe de soins, la procédure constitue une démarche partagée sur le plan de la réflexion et de la responsabilité éthique.
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.
BACKGROUND: The doctor-patient relationship has evolved to respect "the autonomy and patients' rights". One of the cornerstones in such autonomy is the opportunity for patients to draw living wills, also known as advance directives (AD). However, information about AD available to patients remains scarce largely due to the lack of involvement of General practitioners for several reasons. The aim of our study was to evaluate current general practitioner residents' (GPR) behavior concerning their role in informing their patients about AD.
METHOD: We built a French nationwide survey from GPR class of 2012 to 2014.
RESULTS: Two thousand three hundred ten residents completed our survey (21.1% of the total population of GPR during the period). 89.8% declared their willingness to offer patients the opportunity of writing AD. When asked about the usefulness of AD, 73.6% of residents responded that these are a suitable help for patients, but 19.7% considered that AD are essentially geared towards frail patients. Among residents who want to inform patients about AD (n = 2075), 14.7% wanted to involve all patients. Only 20.5% thought that elderly people should be systematically informed about AD. When the question involves other frail people in various disease areas, information seems relevant for 60.1% of GPR considering patient with cancer or malignant hematologic disease and for 56.2% about patients affected by neurodegenerative disease. When considering the routine use of AD, 20.5% of GPR would take them into account only if they are in agreement with the patient’s decision.
CONCLUSIONS: The results of the survey indicate that GPR would rather choose to decide who should be informed about AD, and when to take AD into account for ethical concerns.