BACKGROUND/OBJECTIVES: Physician Orders for Life-Sustaining Treatment (POLST) is recommended as a preferred practice for advance care planning with seriously ill patients. Decision aids can assist patients in advance care planning, but there are limited studies on their use for POLST decisions. We hypothesized that after viewing a POLST video, decision aid participants would demonstrate increased knowledge and satisfaction and decreased decisional conflict.
DESIGN: Pre-and postintervention with no control group.
SETTING/PARTICIPANTS: Fifty community-dwelling adults aged 65 and older asked to complete a POLST based on a hypothetical condition.
INTERVENTIONS: Video decision aid for Sections A and B of the POLST form.
MEASUREMENTS: Pre- and postintervention participant knowledge, decisional satisfaction, decisional conflict, and acceptability of video decision aid.
RESULTS: Use of the video decision aid increased knowledge scores from 11.24 ± 2.77 to 14.32 ± 2.89, P < .001, improved decisional satisfaction 10.14 ± 3.73 to 8.70 ± 3.00, P = .001, and decreased decisional conflict 12 ± 9.42 to 8.15 ± 9.13, P < .001. All participants reported that they were comfortable using the video decision aid, that they would recommend it to others, and that it clarified POLST decisions.
CONCLUSIONS: Participants endorsed the use of a POLST video decision aid, which increased their knowledge of POLST form options and satisfaction with their decisions, and decreased their decisional conflict in POLST completion. This pilot study provides preliminary support for the use of video decision aids for POLST decision-making. Future research should evaluate a decision aid for the entire POLST form and identify patient preferences for implementing POLST decision aids into clinical practice.
Background: Patients with advanced cancer for whom standard systemic treatment is no longer available may be offered participation in early phase clinical trials. In the decision making process, both medical-technical information and patient values and preferences are important. Since patients report decisional conflict after deciding on participation in these trials, improving the decision making process is essential. We aim to develop and evaluate an Online Value Clarification Tool (OnVaCT) to assist patients in clarifying their values around this end-of-life decision. This improved sharing of values is hypothesized to support medical oncologists in tailoring their information to individual patients’ needs and, consequently, to support patients in taking decisions in line with their values and reduce decisional conflict.
Methods: In the first part, patients’ values and preferences and medical oncologists’ views hereupon will be explored in interviews and focus groups to build a first prototype OnVaCT using digital communication (serious gaming). Next, we will test feasibility during think aloud sessions, to deliver a ready-to-implement OnVaCT. In the second part, the OnVaCT, with accompanied training module, will be evaluated in a pre-test (12–18 months before implementation) post-test (12–18 months after implementation) study in three major Dutch cancer centres. We will include 276 patients (> 18 years) with advanced cancer for whom standard systemic therapy is no longer available, and who are referred for participation in early phase clinical trials. The first consultation will be recorded to analyse patient-physician communication regarding the discussion of patients’ values and the decision making process. Three weeks afterwards, decisional conflict will be measured.
Discussion: This project aims to support the discussion of patient values when considering participation in early phase clinical trials. By including patients before their first appointment with the medical oncologist and recording that consultation, we are able to link decisional conflict to the decision making process, e.g. the communication during consultation. The study faces challenges such as timely including patients within the short period between referral and first consultation. Furthermore, with new treatments being developed rapidly, molecular stratification may affect the patient populations included in the pre-test and post-test periods.
BACKGROUND: Recent studies have shown substantial deficiencies in the quality or quantity (or both) of communication and decision-making during serious illness. We evaluated the efficacy of a novel decision support intervention, the Plan Well Guide, in increasing completion of a standard medical order form for advance medical care planning and improving decisional outcomes in nonacademic primary care settings.
METHODS: We conducted a randomized trial in 3 primary care practices in Lethbridge, Alberta in 2017-2018. We recruited "patients at high risk" referred by the primary care doctor who required establishment or review of their Goals of Care Designation (GCD). Enrolled patients were randomly allocated to receive the Plan Well Guide, delivered by a trained facilitator, or usual care. Eight to 12 weeks after the intervention, a research assistant blinded to intervention assignment contacted the patients in both groups by telephone to do a final outcome assessment. The primary outcome was completion of GCD forms; secondary outcomes included decisional conflict scores and ratings of satisfaction.
RESULTS: A total of 123 patients (59 women [48.0%]; mean age 73.9 yr) were enrolled, 66 in the intervention arm and 57 in the usualcare arm; 119 patients completed the trial. After the intervention, GCD completion rates in the intervention and usual-care groups were 95.3% and 90.9%, respectively (risk difference [RD] 4%, 95% confidence interval [CI] -14% to 22%), and the rate of concordance between medical orders and expressed preferences on follow-up was 78% and 66%, respectively (RD 12%, 95% CI -7% to 30%). Significantly fewer patients in the intervention group than in the usual-care group had written medical orders for intensive care unit care and cardiopulmonary resuscitation (22 [34%] v. 33 [60%], RD -26%, 95% CI -42% to -8%). Patients in the intervention group had lower decisional conflict scores than those in the usual-care group (mean 30.9 v. 43.1, adjusted mean difference -12.0, 95% CI -23.2 to -0.8). Physicians considered patients in the intervention group to have lower decisional conflict than those in the usual-care group, although not significantly so (mean score 10.4 v. 14.9, adjusted mean difference -4.7, 95% CI -9.9 to 0.4) and spent less time with the former (mean 9.7 v. 13.2 min, adjusted mean difference -3.5, 95% CI -5.5 to -1.5 min).
INTERPRETATION: The decision-support intervention did not increase GCD completion rates but did seem to improve some aspects of decisional quality while reducing the physician's time to accomplish GCD decisions.
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.
Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.
Method: A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol.
Results: Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience.
Conclusion: Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.
Introduction: Although shortcomings in clinician–family communication and decision making for incapacitated, critically ill patients are common, there are few rigorously tested interventions to improve outcomes. In this manuscript, we present our methodology for the Pairing Re-engineered Intensive Care Unit Teams with Nurse-Driven Emotional support and Relationship Building (PARTNER 2) trial, and discuss design challenges and their resolution.
Methods and analysis: This is a pragmatic, stepped-wedge, cluster randomised controlled trial comparing the PARTNER 2 intervention to usual care among 690 incapacitated, critically ill patients and their surrogates in five ICUs in Pennsylvania. Eligible subjects will include critically ill patients at high risk of death and/or severe long-term functional impairment, their main surrogate decision-maker and their clinicians. The PARTNER intervention is delivered by the interprofessional ICU team and overseen by 4–6 nurses from each ICU. It involves: (1) advanced communication skills training for nurses to deliver support to surrogates throughout the ICU stay; (2) deploying a structured family support pathway; (3) enacting strategies to foster collaboration between ICU and palliative care services and (4) providing intensive implementation support to each ICU to incorporate the family support pathway into clinicians’ workflow. The primary outcome is surrogates’ ratings of the quality of communication during the ICU stay as assessed by telephone at 6-month follow-up. Prespecified secondary outcomes include surrogates’ scores on the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the modified Patient Perception of Patient Centredness scale, the Decision Regret Scale, nurses’ scores on the Maslach Burnout Inventory, and length of stay during and costs of the index hospitalisation.
We also discuss key methodological challenges, including determining the optimal level of randomisation, using existing staff to deploy the intervention and maximising long-term follow-up of participants.
Ethics and dissemination: We obtained ethics approval through the University of Pittsburgh, Human Research Protection Office. The findings will be published in peer-reviewed journals.
Background: Understanding the preferences for end-of-life (EOL) care is imperative in providing quality care to patients with life-threatening illness. However, it is difficult for patients, families, and health-care providers to initiate EOL conversations in China. An easy-to-use tool that could help health-care providers initiate EOL discussions is the Heart to Heart Card Game (HHCG), originally designed for Chinese Americans.
Objective: To evaluate the EOL preferences among Chinese patients with cancer using the HHCG.
Methods: We conducted a descriptive study to assess EOL preferences using HHCG among patients at the oncology chemoradiotherapy department of a Chinese tertiary hospital.
Results: We recruited 58 patients in total of which 40 (69%) patients completed HHCG. The most frequently selected card was “I want my family to get along,” followed by “I don’t want to be a burden to my family,” and “I want to maintain my dignity.” Among the 3 cards selected, social needs were rated as the most important (36.7%), followed by spiritual needs (35.8%), physical needs (20.0%), and financial needs (7.5%). The evaluation of the HHCG revealed that more than 70% of the participants highly valued HHCG.
Conclusion: The HHCG can be used as a communication tool to encourage EOL discussions between cancer patients and health-care providers in China. Moreover, Chinese patients with cancer attach significant importance to their family and maintaining dignity at the EOL.
Aim: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions.
Methods: Six databases and the grey literature were searched in December 2018. Two reviewers independently reviewed database citations, and one reviewed grey literature citations. Citation chaining via Scopus was conducted. Quality was assessed using IPDAS Collaboration Criteria.
Results: After reviewing 18 671 database citations and 10 988 grey literature citations, 18 citations describing 11 decision aids remained. Decision aids targeted premature infants, children requiring airway management, children with cancer and children with scoliosis. Three aids underwent testing beyond initial development. Quality scores averaged 27 of 50 points.
Conclusions: There are few high-quality decision aids available for use and a lack evidence of widespread clinical use. Additional research is needed to support systematic development and the use of decision aids with families.
BACKGROUND: In Canada, access to palliative care is a growing concern, particularly in rural communities. These communities have constrained health care services and accessing local palliative care can be challenging. The Site Suitability Model (SSM) was developed to identify rural "candidate" communities with need for palliative care services and existing health service capacity that could be enhanced to support a secondary palliative care hub. The purpose of this study was to test the feasibility of implementing the SSM in Ontario by generating a ranked summary of rural "candidate" communities as potential secondary palliative care hubs.
METHODS: Using Census data combined with community-level data, the SSM was applied to assess the suitability of 12 communities as rural secondary palliative care hubs. Scores from 0 to 1 were generated for four equally-weighted components: (1) population as the total population living within a 1-h drive of a candidate community; (2) isolation as travel time from that community to the nearest community with palliative care services; (3) vulnerability as community need based on a palliative care index score; and (4) community readiness as five dimensions of fit between a candidate community and a secondary palliative care hub. Component scores were summed for the SSM score and adjusted to range from 0 to 1.
RESULTS: Population scores for the 12 communities ranged widely (0.19-1.00), as did isolation scores (0.16-0.94). Vulnerability scores ranged more narrowly (0.27-0.35), while community readiness scores ranged from 0.4-1.0. These component scores revealed information about each community's particular strengths and weaknesses. Final SSM scores ranged from a low of 0.33 to a high of 0.76.
CONCLUSIONS: The SSM was readily implemented in Ontario. Final scores generated a ranked list based on the relative suitability of candidate communities to become secondary palliative care hubs. This list provides information for policy makers to make allocation decisions regarding rural palliative services. The calculation of each community's scores also generates information for local policy makers about how best to provide these services within their communities. The multi-factorial structure of the model enables decision makers to adapt the relative weights of its components.
Background: Palliative systematic treatment offers uncertain and often limited benefits, and the burden can be high. Hence, treatment decisions require shared decision making (SDM). This trial examined the independent and combined effect of an oncologist training and a patient communication aid on SDM.
Methods: In this multicenter randomized controlled trial with four parallel arms (2016–2018), oncologists (n = 31) were randomized to receive SDM communication skills training or not. The training consisted of a reader, two group sessions, a booster session, and a consultation room tool (10 hours). Patients (n = 194) with advanced cancer were randomized to receive a patient communication aid or not. The aid consisted of education on SDM, a question prompt list, and a value clarification exercise. The primary outcome was observed SDM as rated by blinded observers from audio-recorded consultations. Secondary outcomes included patient-reported SDM, patient and oncologist satisfaction, patients’ decisional conflict, patient quality of life 3 months after consultation, consultation duration, and the decision made.
Results: The oncologist training had a large positive effect on observed SDM (Cohen's d = 1.12) and on patient-reported SDM (d = 0.73). The patient communication aid did not improve SDM. The combination of interventions did not add to the effect of training oncologists only. The interventions affected neither patient nor oncologist satisfaction with the consultation nor patients’ decisional conflict, quality of life, consultation duration, or the decision made.
Conclusion: Training medical oncologists in SDM about palliative systemic treatment improves both observed and patient-reported SDM. A patient communication aid does not. The incorporation of skills training in (continuing) educational programs for medical oncologists is likely to stimulate the widely advocated uptake of shared decision making in clinical practice. Trial registration. Netherlands Trial Registry NTR 5489.
Implications for Practice: Treatment for advanced cancer offers uncertain and often small benefits, and the burden can be high. Hence, treatment decisions require shared decision making (SDM). SDM is increasingly advocated for ethical reasons and for its beneficial effect on patient outcomes. Few initiatives to stimulate SDM are evaluated in robust designs. This randomized controlled trial shows that training medical oncologists improves both observed and patient-reported SDM in clinical encounters (n = 194). A preconsultation communication aid for patients did not add to the effect of training oncologists. SDM training effectively changes oncologists’ practice and should be implemented in (continuing) educational programs.
Background: Glioma patients make frequent decisions regarding treatment and end-of-life care despite cognitive limitations. We evaluated the feasibility of incorporating the Macarthur Competence Assessment Tool for Treatment (MacCAT-T) to assess decision-making ability in glioma patients.
Methods: High-grade glioma patients were consented to an IRB-approved prospective study at one of three treatment decision time points. Patients completed the Montreal Cognitive Assessment (MoCA) and providers informally assessed patient decision-making ability based on neurologic examination. The MacCAT-T, designed to assess patient decision-making domains, was administered by a research assistant. MoCA, provider assessment, and MacCAT-T results were compared to determine whether the MacCAT-T provided additional information. To assess feasibility, we measured administration time and obtained qualitative patient feedback.
Results: Eleven patients (median age = 68 years, median Karnofsky Performance Status [KPS] = 80–90) were enrolled. MacCAT-T administration averaged 18.5 minutes. Ninety percent of patients reported “increased knowledge of their treatment options” after taking the MacCAT-T. Clinicians deemed 10 patients to possess sufficient decision-making ability, yet, 6 of them demonstrated impairments in reasoning on the MacCAT-T. Seven patients yielded discordant MOCA and MacCAT-T data, five patients with MOCA score =26 showed qualitative MacCAT-T impairments in Reasoning and five patients who scored <21 were within nonimpaired ranges for three of four decision-making domains.
Conclusion: MacCAT-T administration was feasible and informative to patients but findings were discordant from MOCA and informal provider assessments. The MacCAT-T may help in identifying mild Reasoning impairments related to patients' initial treatment decisions and should be studied further to determine its role in clinical practice.
Effective communication between clinicians and seriously ill patients and their families about a patient's goals of care is essential to patient-centered, goal-concordant, end-of-life care. Effective goals-of-care communication between clinicians and patients is associated with improved patient and family outcomes, increased clinician satisfaction, and decreased health care costs. Unfortunately, clinicians often face barriers in goals-of-care communication and collaboration, including a lack of education, time constraints, and no standardized protocols. Without clear goals-of-care communication, patients may not be able to provide guidance to clinicians about their end-of-life preferences. The purpose of this integrative review was to examine the efficacy of goals-of-care communication interventions between patients, families, and clinicians in randomized controlled trials published between 2009 and 2018. Twenty-three studies met the inclusion criteria with an overall sample (N = 6376) of patients, family members, and clinicians. Results revealed of the 6 different intervention modes, patient decision aids and patient-clinician communication consistently increased comprehension and communication. Twelve of the studies had nurses facilitate or support the communication intervention. Because nurses are a critical, trusted nexus for communication about end-of-life care, focusing on nurse interventions may significantly improve clinical outcomes and the patient experience.
OPINION STATEMENT: Patients with advanced cancer and their families commonly seek information about prognosis to aid decision-making in medical (e.g. surrounding treatment), psychological (e.g. saying goodbye), and social (e.g. getting affairs in order) domains. Oncologists therefore have a responsibility to identify and address these requests by formulating and sensitively communicating information about prognosis. Current evidence suggests that clinician predictions are correlated with actual survival but tend to be overestimations. In an attempt to cultivate prognostic skills, it is recommended that clinicians practice formulating and recording subjective estimates of prognosis in advanced cancer patient's medical notes. When possible, a multi-professional prognostic estimate should be sought as these may be more accurate than individual predictions alone. Clinicians may consider auditing the accuracy of their predictions periodically and using feedback from this process to improve their prognostic skills.Clinicians may also consider using validated prognostic tools to complement their clinical judgements. However, there is currently only limited evidence about the comparative accuracy of different prognostic tools or the extent to which these measures are superior to clinical judgement. Oncologists and palliative care physicians should ensure that they receive adequate training in advanced communication skills, which builds upon their pre-existing skills, to sensitively deliver information on prognosis. In particular, clinicians should acknowledge their own prognostic uncertainty and should emphasise the supportive care that can continue to be provided after stopping cancer-directed therapies.
Purpose: This study evaluated the decision-making capacity of persons with mild and moderate dementia on end-of-life care when using visual aids. A secondary purpose was to learn whether the judges naive to the experimental conditions would rate participants' decisional abilities as better when augmented by visual aids, thereby validating the behavioral changes due to the use of these external support.
Method: Twenty older adults with mild and moderate dementia demonstrated Understanding, Expressing a Choice, Reasoning, and Appreciation of 2 medical vignettes under 2 counterbalanced conditions: verbal alone or verbal with visual aids. Transcripts were analyzed and scored to measure decisional skills. Twelve judges rated participants' decisional abilities using a 7-point Likert scale.
Results: Participants demonstrated significantly better overall decisional capacity in Understanding, Reasoning, and Appreciation when supported by visual aids during the decision-making process. No significant differences between conditions were found in Expressing a Choice, the decisional skill Logical Sequence under Reasoning, and Acknowledgment under Appreciation. Overall, the judges' ratings validated these outcomes; the judges' ratings reflected greater agreement in the visual condition than in the verbal condition.
Conclusions: Findings indicated that visual aids (a) improved the decision-making capacity of individuals with dementia in comprehending medical information, employing supportive reasons, and relating this information to his or her own situation and (b) contain the potential for judges who majored or are majoring in speech-language pathology to reach a stronger consensus when determining the decision-making capacity of individuals with dementia.
Context: Advance care planning (ACP) in a healthy general population could improve the quality of care when a health problem arises.
Objectives: The purpose of this study was to evaluate the efficacy of video decision-support aid in increasing the intention to document ACP in the general, healthy population.
Methods: In this randomized controlled trial, we enrolled 250 members of the general population (aged =20 years and determined to be healthy), stratified by age and sex. The intervention was a video that provided information about ACP and end-of-life care options such as CPR and palliative care. An attention-control arm was given a booklet about advance directives. Primary outcome was a change in intention to document ACP. Secondary outcomes included the intention to refuse CPR at terminal status, CPR and palliative care knowledge score, and the Hospital Anxiety and Depression Scale (HADS).
Results: 250 participants were randomly assigned, half to the video-assisted intervention group and half to the attention-control group. Within 1 week post-intervention, the intention to document ACP was significantly higher in the video-assisted intervention arm (68.0% vs 39.2%; p < 0.001) and changes in the intention to document ACP were significantly greater in the video group than in the brochure group (p = 0.008; = 14.4%). Palliative care knowledge score was also significantly increased in the video group (p = 0.036).
Conclusion: A well-constructed, video decision support intervention can increase the intention to document ACP in the general population that presumably had little opportunity to discuss ACP with physicians.
BACKGROUND: Although patients often prefer less rather than more treatment at the end of life, in the absence of contrary instructions, the medical profession's de facto position is to treat aggressively. It is unknown whether a computer-based decision aid can affect treatment choices.
METHODS: Secondary analysis of a single-center, single-blind randomized controlled trial of an advance care planning (ACP) intervention among 200 patients with stage IV cancer. Participants were randomized to intervention (Making Your Wishes Known, a values-neutral, educational, computer-based decision aid) or control (standard living will + brochure). After reading a hypothetical clinical vignette, participants were asked whether they would want 11 medical/surgical treatments in that situation (dialysis, cardiopulmonary resuscitation [CPR], ventilator, feeding tube, etc). The median number of treatments wanted by participants was compared between groups, and logistic regression was used to compare between-group likelihood of not wanting each specific treatment.
RESULTS: The median number of treatments wanted was 1 in the intervention group versus 5 in the control (P < .001). For 6 of 11 treatments, the intervention group was significantly less likely than control to want aggressive treatment. Most notably, compared to control, intervention participants were less likely to want CPR (odds ratio [OR] = 0.31), short-term mechanical ventilation (OR = 0.34), short-term dialysis (OR = 0.38), surgery (OR = 0.37), and transfusion (OR = 0.21).
CONCLUSIONS: Individuals using an educational ACP decision aid were less likely to want aggressive medical treatment than those completing standard living wills. These findings have implications not only for how to respect patient's wishes but also potentially for reducing costs at the end of life.
Background: Compulsory admission to psychiatric hospital is rising despite serious ethical concerns. Among measures to reduce compulsory admissions, Psychiatric Advance Directives (PAD) are the most promising, with intensive PAD (i.e. facilitated and shared) being the most effective. The aim of the study is to experiment Psychiatric Advance Directives in France.
Methods: A multicentre randomized controlled trial and qualitative approach conducted from January 2019 to January 2021 with intent-to-treat analysis.
Setting: Seven hospitals in three French cities: Lyon, Marseille, and Paris. Research assistants meet each participant at baseline, 6 months and 12 months after inclusion for face-to-face interviews.
Participants: 400 persons with a DSM-5 diagnosis of bipolar I disorder (BP1), schizophrenia (SCZ), or schizoaffective disorders (SCZaff), compulsorily admitted to hospital within the last 12 months, with capacity to consent (MacCAT-CR), over 18 years old, and able to understand French.
Interventions: The experimental group (PAD) (expected n = 200) is invited to fill in a document describing their crisis plan and their wishes in case of loss of mental capacity. Participants meet a facilitator, who is a peer support worker specially trained to help them. They are invited to nominate a healthcare agent, and to share the document with them, as well as with their psychiatrist. The Usual Care (UC) group (expected n = 200) receives routine care.
Main outcomes and measures: The primary outcome is the rate of compulsory admissions to hospital during the 12-month follow-up. Secondary outcomes include quality of life (S-QoL18), satisfaction (CSQ8), therapeutic alliance (4-PAS), mental health symptoms (MCSI), awareness of disorders (SUMD), severity of disease (ICG), empowerment (ES), recovery (RAS), and overall costs.
Discussion: Implication of peer support workers in PAD, potential barriers of supported-decision making, methodological issues of evaluating complex interventions, evidence-based policy making, and the importance of qualitative evaluation in the context of constraint are discussed.
Trial registration: ClinicalTrials.gov identifier: NCT03630822. Registered 14th August 2018.
Background: Anticipating and making health care decisions about appropriate or preferred treatment around end-of-life care are intellectually challenging and emotionally distressing for metastatic breast cancer (MBC) patients, new interventions are needed.
Objective: This study examined the effect of Four Conversations, an online and personalized coping and decision aid curriculum, on the completion of advance care directives and shared decision making among patients and their loved ones, clinicians, and spirit.
Design: Participants were randomized 1:1 to Four Conversations or wait-listed usual care conditions.
Setting: Adult breast cancer survivors with metastatic disease were recruited nationally.
Measurements: Electronic surveys collected self-reported demographic, clinical, and outcome data at baseline and four weeks postintervention.
Results: Participants (N = 252) were mean age 53.6 ± 11.0 years; 100% female; 88% Caucasian; 67% married; and 33% employed. Over half (54%) of treatment arm participants without an advance directive completed one by study end, most (62%) felt that Four Conversations helped them quite a bit or a great deal in making a better decision, and 90% would recommend to others. Difference in the change in decisional conflict scores for treatment and control conditions was not significant (p = 0.07).
Conclusions: These results suggest that Four Conversations facilitated the completion of advance care directives. Given that reductions in decisional conflict scores between the treatment and control arms were not significant, we cannot conclude that program use was associated with improved decisional conflict among MBC survivors. Online programs can be a feasible and effective alternative to in-person support.
OBJECTIVE: The purpose of this randomised trial is to evaluate the efficacy of a decision support intervention for serious illness decisions (the Plan Well Guide decision aid; www.PlanWellguide.com) in increasing the engagement of substitute decision-makers (SDMs) in the patient's advance care planning process (ie, 'ACP engagement'), specifically the SDM's confidence and readiness for the role in the future.
METHODS AND ANALYSIS: This study is a parallel group randomised controlled trial. We aim to enrol 90 participant dyads: patients aged 65 years and older attending outpatient healthcare settings and with indicators they would be at high risk of needing future medical decisions and their SDM. The intervention is the Plan Well Guide decision aid, administered to the patient by a facilitator, with the SDM present. The primary endpoint is change after 3 months in the SDM's ACP engagement using a validated measure of behavioural change (SDM's knowledge, contemplation, self-efficacy and readiness) to enact the role. The secondary endpoints are (1) ACP engagement of the patient measured by a validated survey; (2) change in SDM decisional conflict regarding involvement in future decision-making and (3) postintervention patient decisional conflict regarding preference for life-sustaining treatments. Primary and secondary continuous outcomes will be analysed using the linear regression. The mean difference and 95% CIs will be reported.
ETHICS AND DISSEMINATION: Approval was received August 2017 (2017-3714-GRA) from the Hamilton Integrated Research Ethics Board. We plan to dissesseminate trial results in peer-reviewed journals, at national and international conferences, and via our web-based knowledge translation platforms.
Supporting and managing end of life in emergency departments (EDs) is often difficult and is becoming increasingly commonplace. Patients who present at the end of life are often triaged as low priority as their signs and symptoms are not considered life-threatening and they are often exposed to unnecessary and inappropriate tests and investigations. This results in increased stress and distress for patients and their family and carers in an environment that is not suited to this type of care. There are few specified palliative care pathways that provide the level of care required by these patients. This article describes the Time is Precious (TiP) project, the development of a palliative care decision-making framework to support and address the needs of patients who present to an ED at end of life, in a timely and appropriate manner. It also reports findings of an evaluation of TiP that show patients are identified more quickly and cared for more appropriately as nursing and medical care can be tailored to meet their needs.
CONTEXT: Advanced cancer patients have unrecognized gaps in their understanding about palliative radiation therapy (PRT).
OBJECTIVES: To build a video decision aid for hospitalized patients with advanced cancer referred for PRT and prospectively test its efficacy in reducing decisional uncertainty, improving knowledge, increasing treatment readiness and readiness for palliative care consultation, and its acceptability among patients.
METHODS: Forty patients with advanced cancer hospitalized at Memorial Sloan Kettering Cancer Center watched a video decision aid about PRT and palliative care. Patients' conceptual and logistical knowledge of PRT, decisional uncertainty, treatment readiness, and readiness for palliative care consultation were assessed before and after watching the video with a 6-item knowledge survey, the decisional uncertainty subscale of the Decisional Conflict Scale, and Likert instruments to assess readiness to accept radiation treatment and/or palliative care consultation, respectively. A post-video survey assessed the video's acceptability among patients.
RESULTS: After watching the video, decisional uncertainty was reduced (28.3 vs. 21.7, p=0.02); knowledge of PRT improved (60.4 vs. 88.3, p<0.001); and PRT readiness increased (2.0 vs. 1.3, p=0.04). Readiness for palliative care consultation was unchanged (p=0.58). Patients felt very comfortable (70%) watching the video and would highly recommend it (75%) to others.
CONCLUSION: Among hospitalized patients with advanced cancer, a video decision aid reduced decisional uncertainty, improved knowledge of PRT, increased readiness for PRT, and was well-received by patient viewers.