This paper recounts the author's conversations with Ryan Farnsworth, a 30-year-old ALS patient who consented to be interviewed for the purpose of improving communication between physicians and patients. Under the California End of Life Option (ELOA), the patient had been prescribed medication that would allow him to end his life at a time of his choosing. He describes coping with the challenges of the illness, how he will make the decision when to take the drugs and what he hopes will be his legacy.
Background: Failure to initiate discussions about patients' values and goals in serious illness remains a common problem. Many clinicians are inadequately trained for these discussions.
Objective: Evaluate whether a novel train-the-trainer model results in high-quality training that improves clinicians' self-reported competencies in serious illness communication.
Design: Multimethod evaluation of an educational program.
Setting/Context: In 2016, three faculty at Ariadne Labs (AL) conducted three train-the-trainer courses to equip faculty trainers at each of the three institutions to teach serious illness communication to clinicians.
Measures: As collected by a post-training questionnaire, primary evaluation measure is clinicians' self-reported change in skills after the training compared with before. Secondary measures include a course evaluation and qualitative learnings.
Results: From 2016 to 2018, AL trained 22 trainers (19/22 were palliative care specialists) in three systems, who trained 297 clinicians (49% physicians; 35% advanced practice clinicians; 12% registered nurses, social workers, or chaplain; 4.0% Other) spanning subspecialties (48%); primary care (28%); palliative care (17%); and other (7.1%). Clinicians reported statistically significant improvement in all skills for two of the systems, with a third system demonstrating improvement in all skills with two reaching statistical significance (p < 0.0001). Participants rated the quality of the training highly (95% mostly/extremely effective) and shared a diverse array of takeaways that reflect positive shifts in knowledge, attitudes, and skills.
Conclusion: Serious illness communication training, delivered through a train-the-trainer model, was highly acceptable and resulted in significant self-reported improvements in competencies of clinicians. This may be a viable method for health systems seeking to train their clinical workforce.
CONTEXT: Patients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care.
OBJECTIVES: To understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians.
METHODS: This study utilized a mixed-methods design. 31 semi-structured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass Correlation Coefficients (ICCs) were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores.
RESULTS: Participants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed.
CONCLUSION: The ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns.
Surgeons spend their careers taking care of complex surgical problems with high risk that have the potential to improve patient quality of life. Regrettably, patients do not always do well and the goal of improved quality of life through surgical palliation is not always achieved. Sometimes surgical complications arise, and patients fail to recover, or their disease progresses and the reality of cure changes, necessitating transparent communication. Ideally, surgeons address end-of-life issues as potential-ities over the continuum of care within the framework of the surgeon-patient relation-ship, rather than during a crisis when all treatment options have been exhausted. This article helps surgeons with the components of transitioning to comfort-focused care at the end of life, beginning with preoperative preparation and by encouraging ongoinggoals of care discussions thereafter.
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Nurse practitioners play an integral part of the face-to-face visit. The face-to-face visit requirement came into effect on January 11, 2011, for hospice patients entering their third or later benefit period. The face-to-face requirement was created because of concerns regarding high numbers of hospice patients with lengths of stay greater than 180 days, in addition to concerns the physician was not as active in the care of the hospice patient as required. Face-to-face visits can be completed by the hospice physician or nurse practitioner employed by the hospice agency. The face-to-face narrative includes a clear title, date, clinical findings demonstrating continued hospice eligibility and a signature of the individual completing the face-to-face visit. In addition, an attestation statement stating that the encounter was completed with the patient and the clinical findings were provided to the certifying physician is also a requirement of the narrative. Documenting clinical findings that demonstrate hospice eligibility can be challenging. Using the FACE-2-FACE method can help clarify the clinical findings necessary to demonstrate the patient’s continued hospice eligibility.
GPs should do more to help patients plan for their care and treatment because of a lack of awareness about advance decisions, says a report from the charity Compassion in Dying.
Advance decisions are documents that allow people to state in what circumstances they would want to refuse future treatment if they become seriously ill and cannot make or convey such decisions. Formerly known as “living wills,” advance decisions gained legal status in 2005.
OBJECTIVES: On 19 June 2019, assisted dying became lawful in Victoria, the second most populous state in Australia. Section 8 of the Voluntary Assisted Dying Act is a legislative safeguard that is designed to ensure a patient's request for assistance to die is voluntary. This section prohibits health practitioners from initiating a conversation about assisted dying with the patient. This article explores the potential implications of this prohibition for effective communication between doctors and their patients, and the ability of doctors to provide high quality end-of-life (EOL) care in some cases.
METHOD: The authors reviewed and analysed literature on the importance of communication at the EOL including the need to understand and appropriately respond to Desire to Die or Desire to Hasten Death statements. A legal critique of section 8 of the Victorian Voluntary Assisted Dying Act was also undertaken to determine the scope of this new duty and how it aligns with existing legal obligations that would otherwise require doctors to provide information about EOL options requested by a patient.
RESULTS: Contemporary literature suggests that open and honest communication between doctor and patient including the provision of information about all EOL options when sought by the patient represents good clinical practice and will lead to optimal EOL care. The provision of such information also reflects professional, ethical and legal norms.
CONCLUSION: Despite (arguably) promoting an appropriate policy objective, the legislative prohibition on health professionals initiating conversations about voluntary assisted dying may, in cases where patients seek information about all EOL options, lead to less optimal patient outcomes.
Upon receiving a cancer diagnosis, you immediately understand the gravity of the situation, and rightfully so, given that there are innumerable types, grades, and stages for which there is an entire gamut of outcomes. In your mind you have already begun creating an image of this cancer as a stain, a beast, a monster that you need to be rid of.
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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: 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.
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.
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.