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.
Importance High-quality conversations between clinicians and seriously ill patients about values and goals are associated with improved outcomes but occur infrequently.
Objective To examine feasibility, acceptability, and effect of a communication quality-improvement intervention (Serious Illness Care Program) on patient outcomes.
Design, Setting, and Participants A cluster randomized clinical trial of the Serious Illness Care Program in an outpatient oncology setting was conducted. Patients with advanced cancer (n = 278) and oncology clinicians (n = 91) participated between September 1, 2012, and June 30, 2016. Data analysis was performed from September 1, 2016, to December 27, 2018. All analyses were conducted based on intention to treat.
Interventions Tools, training, and system changes.
Main Outcomes and Measures The coprimary outcomes included goal-concordant care (Life Priorities) and peacefulness (Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire) at the end of life. Secondary outcomes included therapeutic alliance (Human Connection Scale), anxiety (Generalized Anxiety Disorder 7 scale), depression (Patient Health Questionnaire 9), and survival. Uptake and effectiveness of clinician training, clinician use of the conversation tool, and conversation duration were evaluated.
Results Data from 91 clinicians in 41 clusters (72.9% participation; intervention, n = 48; control, n = 43; 52 [57.1%] women) and 278 patients (45.8% participation; intervention, n = 134; control, n = 144; 148 [53.2%] women) were analyzed. Forty-seven clinicians (97.9%) rated the training as effective (mean [SD] score, 4.3 [0.7] of 5.0 possible); of 39 who received a reminder, 34 (87.2%) completed at least 1 conversation (median duration, 19 minutes; range, 5-70). Peacefulness, therapeutic alliance, anxiety, and depression did not differ at baseline. The coprimary outcomes were evaluated in 64 patients; no significant differences were found between the intervention and control groups. However, the trial demonstrated significant reductions in the proportion of patients with moderate to severe anxiety (10.2% vs 5.0%; P = .05) and depression symptoms (20.8% vs 10.6%; P = .04) in the intervention group at 14 weeks after baseline. Anxiety reduction was sustained at 24 weeks (10.4% vs 4.2%; P = .02), but depression reduction was not sustained (17.8% vs 12.5%; P = .31). Survival and therapeutic alliance did not differ between groups.
Conclusions and Relevance The results of this cluster randomized clinical trial were null with respect to the coprimary outcomes of goal-concordant care and peacefulness at the end of life. Methodologic challenges for the primary outcomes, including measure selection and sample size, limit the conclusions that can be drawn from the study. However, the significant reductions in anxiety and depression in the intervention group are clinically meaningful and require further study.
Importance Earlier clinician-patient conversations about patients’ values, goals, and preferences in serious illness (ie, serious illness conversations) are associated with better outcomes but occur inconsistently in cancer care.
Objective To evaluate the efficacy of a communication quality-improvement intervention in improving the occurrence, timing, quality, and accessibility of documented serious illness conversations between oncology clinicians and patients with advanced cancer.
Design, Setting, Participants This cluster randomized clinical trial in outpatient oncology was conducted at the Dana-Farber Cancer Institute and included physicians, advanced-practice clinicians, and patients with cancer who were at high risk of death.
Main Outcomes and Measures The primary outcomes (goal-concordant care and peacefulness at the end of life) are published elsewhere. Secondary outcomes are reported herein, including (1) documentation of at least 1 serious illness conversation before death, (2) timing of the initial conversation before death, (3) quality of conversations, and (4) their accessibility in the electronic medical record (EMR).
Results We enrolled 91 clinicians (48 intervention, 43 control) and 278 patients (134 intervention, 144 control). Of enrolled patients, 58% died during the study (n=161); mean age was 62.3 years (95% CI, 58.9-65.6 years); 55% were women (n=88). These patients were cared for by 76 of the 91 enrolled clinicians (37 intervention, 39 control); years in practice, 11.5 (95% CI, 9.2-13.8); 57% female (n=43). Medical record review after patients’ death demonstrated that a significantly higher proportion of intervention patients had a documented discussion compared with controls (96% vs 79%, P = .005) and intervention conversations occurred a median of 2.4 months earlier (median, 143 days vs 71 days, P < .001). Conversation documentation for intervention patients was significantly more comprehensive and patient centered, with a greater focus on values or goals (89% vs 44%, P < .001), prognosis or illness understanding (91% vs 48%, P < .001), and life-sustaining treatment preferences (63% vs 32%, P = .004). Documentation about end-of-life care planning did not differ between arms (80% intervention vs 68% control, P = .08). Significantly more intervention patients had documentation that was accessible in the EMR (61% vs 11%, P < .001).
Conclusions and Relevance This communication quality-improvement intervention resulted in more, earlier, better, and more accessible serious illness conversations documented in the EMR. To our knowledge, this is the first such study to demonstrate improvement in all 4 of these outcomes.
OBJECTIVES: Patients with colorectal cancer undergoing palliative treatment receive extensive treatment-related information throughout their disease trajectory. We aimed to explore the experiences of patients with incurable colorectal cancer while in palliative care and their reflections on the information provided by physicians and nurses. Our main focus was the patients' thoughts about how information about disease status and life expectancy was communicated, from the first time that they were informed about the incurable nature of their disease through to postsurgery palliative treatment.
SETTINGS: Patients with colorectal cancer receiving palliative chemotherapy.
RESEARCH DESIGN: We used a qualitative approach, and the data were analysed by qualitative content analysis.
PARTICIPANTS: 20 patients (34-75 years of age) were included in the study; 12 received first-line chemotherapy and 8 received second-line chemotherapy. Eleven patients were treated by oncologists, and nine were treated by junior physicians.
RESULTS: Data-driven empirical analysis identified three themes: (1) inadequate information during the initial phase of the disease trajectory; (2) hope and information further into the disease trajectory and (3) personal, professional and organisational factors that influenced information and communication throughout the disease trajectory.
CONCLUSION: The participants' experience of being told for the first time that they had an incurable disease was perceived as inadequate, while postsurgery palliative chemotherapy, physicians and nurses offered hope. The participants preferred customised information about their treatment and likely future prospects and physicians and nurses who took a holistic and compassionate approach focusing on their lifeworld. To be a sensitive, holistic and compassionate physician or nurse requires knowledge and confidence. To achieve this requires training and guidance at universities and in hospitals.
OBJECTIVE: To investigate views, determinants and barriers to end-of-life discussions for doctors, nurses and members of the public (MoP) and their acceptability of risk prediction tools.
METHODS: Concurrent surveys of 360 doctors and nurses and 497 MoP.
RESULTS: Sixty per cent of clinicians reported high confidence in initiating end-of-life discussions, and 55.8% regularly engaged in them. Barriers to end-of-life communication reported by clinicians were uncertainty on the likely time to death (44.7%) and family requests to withhold information from patients (44.2%). By contrast, most (92.8%) MoP wanted information about life expectancy; 89.9% wanted involvement in treatment decisions if the likelihood of death was high; and 23.8% already had an advance care directive.
CONCLUSIONS: A dissonance exists between doctor/nurses perception of older peoples' preference for receiving prognostic information and the public desire for involvement in decision-making at the end of life. As public attitudes change, strategies for greater involvement of patients in shared end-of-life planning are warranted.
BACKGROUND: Conversations with seriously ill patients about their values and goals have been associated with reduced distress, a better quality of life, and goal-concordant care near the end of life. Yet, little is known about how such conversations are conducted.
OBJECTIVE: To characterize the content of serious illness conversations and identify opportunities for improvement.
DESIGN: Qualitative analysis of audio-recorded, serious illness conversations using an evidence-based guide and obtained through a cluster randomized controlled trial in an outpatient oncology setting. Setting/Measurements: Clinicians assigned to the intervention arm received training to use the "Serious Illness Conversation Guide" to have a serious illness conversation about values and goals with advanced cancer patients. Conversations were de-identified, transcribed verbatim, and independently coded by two researchers. Key themes were analyzed.
RESULTS: A total of 25 conversations conducted by 16 clinicians were evaluated. The median conversation duration was 14 minutes (range 4-37), with clinicians speaking half of the time. Thematic analyses demonstrated five key themes: (1) supportive dialogue between patients and clinicians; (2) patients' openness to discuss emotionally challenging topics; (3) patients' willingness to articulate preferences regarding life-sustaining treatments; (4) clinicians' difficulty in responding to emotional or ambiguous patient statements; and (5) challenges in discussing prognosis.
CONCLUSIONS: Data from this exploratory study suggest that seriously ill patients are open to discussing values and goals with their clinician. Yet, clinicians may struggle when disclosing a time-based prognosis and in responding to patients' emotions. Such skills should be a focus for additional training for clinicians caring for seriously ill patients.
BACKGROUND: Medicine has undergone substantial changes in the way medical dilemmas are being dealt with. Here we explore the attitude of Israeli physicians to two debatable dilemmas: disclosing the full truth to patients about a poor medical prognosis, and assisting terminally ill patients in ending their lives.
METHODS: Attitudes towards medico-ethical dilemmas were examined through a nationwide online survey conducted among members of the Israeli Medical Association, yielding 2926 responses.
RESULTS: Close to 60% of the respondents supported doctor-assisted death, while one third rejected it. Half of the respondents opposed disclosure of the full truth about a poor medical prognosis, and the others supported it. Support for truth-telling was higher among younger physicians, and support for doctor-assisted death was higher among females and among physicians practicing in hospitals. One quarter of respondents supported both truth-telling and assisted death, thereby exhibiting respect for patients' autonomy. This approach characterizes younger doctors and is less frequent among general practitioners. Another quarter of the respondents rejected truth-telling, yet supported assisted death, thereby manifesting compassionate pragmatism. This was associated with medical education, being more frequent among doctors educated in Israel, than those educated abroad. All this suggests that both personal attributes and professional experience affect attitudes of physicians to ethical questions.
CONCLUSIONS: Examination of attitudes to two debatable medical dilemmas allowed portrayal of the multi-faceted medico-ethical scene in Israel. Moreover, this study, demonstrates that one can probe the ethical atmosphere of a given medical community, at various time points by using a few carefully selected questions.
BACKGROUND: Shared decision making is a collaborative process that allows patients, or their surrogates, and clinicians to make health care decisions together. There is an imperative to teach young physicians early in their training the importance of engaging in a shared decision-making process to define overall goals of care (GOC). The PERSON mnemonic proposes a structured format that allows providers to evaluate GOC across the spectrum of serious illnesses, outside of breaking bad news or end-of-life planning.
OBJECTIVES: This study evaluated the utility of the PERSON mnemonic in training residents to have GOC with their patients, and investigated if these skills translated to the bedside with real patient encounters.
METHODS: First-year residents were divided into groups to participate in an in-depth education session. A pre-/postbaseline survey was administered immediately after the education intervention and approximately seven months later to assess retention and utility.
RESULTS: Thirty first-year residents were eligible for this study; 30 attended the educational sessions and completed the immediate baseline pre-/postsurvey and the seven-month follow-up survey, resulting in 100% retention rate throughout study. Residents found sustained utility in the mnemonic. It was significantly successful in increasing the knowledge and confidence level in exploring GOC. Patient-centered outcomes could not be analyzed due to low response rates and limited granularity of hospital-level data.
CONCLUSION: The PERSON mnemonic is a feasible and useful format for teaching residents how to have a GOC discussion.
Physician aid-in-dying (PAD) is now legalized in more than half a dozen states across the United States yet remains controversial among health care providers and the general public. Previous studies have described physicians' and nurses' experiences with and attitudes about PAD; however, there is no data about PAD in the context of genetic counseling. This study explores genetic counselors' experiences, understanding, training, and perspectives about PAD. Fifteen participants were recruited to complete semistructured telephone interviews. Five participants had received patient inquiries about PAD. Most participants (n = 10) did not feel prepared to discuss PAD with patients and felt that they did not have adequate knowledge to answer patient questions about the practice. Participants described how the unique training, skills, and experiences of genetic counselors could be beneficial for discussing PAD with patients, in comparison to other providers. All participants supported training for genetic counselors about PAD, with many suggesting integration with education about palliative care and end-of-life planning. This is the first study to investigate PAD in the context of genetic counseling. Genetic counselors have had patients ask questions about PAD, want education and access to resources about PAD, and believe they can provide important support and guidance to patients considering PAD in some genetic counseling contexts.
Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality. Since patients with severe COPD may experience exacerbations and eventually face mortality, advanced care planning (ACP) has been increasingly emphasized in the recent COPD guidelines. We conducted a multicenter, cross-sectional study to survey the current perspectives of Japanese COPD patients toward ACP. “High-risk” COPD patients and their attending physicians were consecutively recruited. The patients’ family configurations, understanding of COPD pathophysiology, current end-of-life care communication with physicians and family members, and preferences for invasive life-sustaining treatments including mechanical ventilation (MV) and cardiopulmonary resuscitation (CPR) were evaluated using a custom-made, structured, self-administered questionnaire. Attending physicians were also interviewed, and we evaluated the patient–physician agreement. Among the 224 eligible “high-risk” patients, 162 participated. Half of the physicians (54.4%) thought they had communicated detailed information; however, only 19.4% of the COPD patients thought the physicians did so ( score = 0.16). Less than 10% of patients wanted to receive invasive treatment (MV, 6.3% and CPR, 9.4%); interestingly, more than half marked their decision as “refer to the physician” (MV 42.5% and CPR 44.4%) or “refer to family” (MV, 13.8% and CPR, 14.4%). Patients with less knowledge of COPD were less likely to indicate that they had already made a decision. Although ACP is necessary to cope with severe COPD, Japanese “high-risk” COPD patients were unable to make a decision on their preferences for invasive treatments. Lack of disease knowledge and communication gaps between patients and physicians should be addressed as part of these patients’ care.