Exploring the value of structured narrative feedback within the Serious Illness Conversation-Evaluation Exercise (SIC-Ex): a qualitative analysis.

OBJECTIVES: The Serious Illness Conversation Guide (SICG) has emerged as a framework for conversations with patients with a serious illness diagnosis. This study reports on narratives generated from open-ended questions of a novel assessment tool, the Serious Illness Conversation-Evaluation Exercise (SIC-Ex), to assess resident-led conversations with patients in oncology outpatient clinics. DESIGN: Qualitative study using template analysis. SETTING: Three academic cancer centres in Canada. PARTICIPANTS: 7 resident physicians (trainees), 7 patients from outpatient cancer clinics, 10 preceptors (raters) consisting of medical oncologists, palliative care physicians and radiation oncologists. INTERVENTIONS: Each trainee conducted an SIC with a patient, which was videotaped. The raters watched the videos and evaluated each trainee using the novel SIC-Ex and the reference Calgary-Cambridge Guide (CCG) initially and again 3 months later. Two independent coders used template analysis to code the raters' narrative comments and identify themes/subthemes. OUTCOME MEASURES: How narrative comments aligned with elements of the CCG and SICG. RESULTS: Template analysis yielded four themes: adhering to SICG, engaging patients and family members, conversation management and being mindful of demeanour. Narrative comments identified numerous verbal and non-verbal elements essential to SICG. Some comments addressing general skills in engaging patients/families and managing the conversation (eg, setting agenda, introduction, planning, exploring, non-verbal communication) related to both the CCG and SICG, whereas other comments such as identifying substitute decision maker(s), affirming commitment and introducing Advance Care Planning were specific to the SICG. CONCLUSIONS: Narrative comments generated by SIC-Ex provided detailed and nuanced insights into trainees' competence in SIC, beyond the numerical ratings of SIC-Ex and the general communication skills outlined in the CCG, and may contribute to a more fulsome assessment of SIC skills.

Short Graphic Values History Tool for decision making during serious illness.

OBJECTIVES: To develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness. METHODS: The development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before-after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1-2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one's values. RESULTS: In the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (-6.7 points, 95% CI -11.1 to -2.3, p=0.003; 0-100 scale; N=100), with the most improvement seen in the values clarity subscale (-10.0 points, 95% CI -17.3 to -2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1-5 scale; N=61). CONCLUSIONS: The Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.

Effect of "Speak Up" educational tools to engage patients in advance care planning in outpatient healthcare settings: A prospective before-after study.

BACKGROUND: Tools for advance care planning (ACP) are advocated to help ensure patient values guide healthcare decisions. Evaluation of the effect of tools introduced to patients in clinical settings is needed. OBJECTIVE: To evaluate the effect of the Canadian Speak Up Campaign tools on engagement in advance care planning (ACP), with patients attending outpatient clinics. Patient involvement: Patients were not involved in the problem definition or solution selection in this study but members of the public were involved in development of tools. The measurement of impacts involved patients. METHODS: This was a prospective pre-post study in 15 primary care and two outpatient cancer clinics. The outcome was scores on an Advance Care Planning Engagement Survey measuring Behavior Change Process on 5-point scales and Actions (0-21-point scale) administered before and six weeks after using a tool, with reminders at two or four weeks. RESULTS: 177 of 220 patients (81%) completed the study (mean 68 years of age, 16% had cancer). Mean Behavior Change Process scores were 2.9 at baseline and 3.5 at follow-up (mean change 0.6, 95% confidence interval 0.5 to 0.7; large effect size of 0.8). Mean Action Measure score was 3.7 at baseline and 4.8 at follow-up (mean change 1.1, 95% confidence interval 0.6-1.5; small effect size of 0.2). PRACTICAL VALUE: Publicly available ACP tools may have utility in clinical settings to initiate ACP among patients. More time and motivation may be required to stimulate changes in patient behaviors related to ACP.

Subcutaneous Lidocaine for Cancer-Related Pain.

Background: Intravenous lidocaine infusions have been shown to be effective for cancer related pain, but access is restricted to acute care settings. If able to be shown to be safe and effective, the subcutaneous route could expand access to residential hospices or patients' homes. Objectives: This randomized, double-blind, placebo controlled, 2 × 2 crossover trial evaluated the effectiveness, safety, toxicity, and impact on quality of life of a limited duration subcutaneous lidocaine infusion (SCLI) for chronic cancer pain. Methods: Patients with the life expectancy of three months or more, who were experiencing cancer-related pain with a worst severity of at least 4 on a 0-10 scale despite a trial of at least one opioid and appropriate adjuvant analgesic, received two subcutaneous infusions at least a week apart; lidocaine 10 mg/kg over 5.5 hours and saline placebo. The primary outcome was either a reduction in worst pain intensity of two points out of 10 or a reduction in 24 hours opioid dose of at least 30% without worsening of pain scores, in seven days. Results: The SCLI was only effective for two subjects. One of these subjects experienced a drop in worst pain score and the other experienced a reduction in opioid dose. Conclusions: A weight-based subcutaneous infusion of lidocaine does not achieve sufficiently predictable blood levels for determining lidocaine responsiveness. This study does not allow any conclusion to be drawn on whether or not lidocaine would have been more effective had it been titrated to higher blood levels.

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings.

PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.

Serious Illness Conversation-Evaluation Exercise: A Novel Assessment Tool for Residents Leading Serious Illness Conversations.

Background/Objectives: The serious illness conversation (SIC) is an evidence-based framework for conversations with patients about a serious illness diagnosis. The objective of our study was to develop and validate a novel tool, the SIC-evaluation exercise (SIC-Ex), to facilitate assessment of resident-led conversations with oncology patients. Design: We developed the SIC-Ex based on SIC and on the Royal College of Canada Medical Oncology milestones. Seven resident trainees and 10 evaluators were recruited. Each trainee conducted an SIC with a patient, which was videotaped. The evaluators watched the videos and evaluated each trainee by using the novel SIC-Ex and the reference Calgary-Cambridge guide (CCG) at months zero and three. We used Kane's validity framework to assess validity. Results: Intra-class correlation using average SIC-Ex scores showed a moderate level of inter-evaluator agreement (range 0.523-0.822). Most evaluators rated a particular resident similar to the group average, except for one to two evaluator outliers in each domain. Test-retest reliability showed a moderate level of consistency among SIC-Ex scores at months zero and three. Global rating at zero and three months showed fair to good/very good inter-evaluator correlation. Pearson correlation coefficients comparing total SIC-Ex and CCG scores were high for most evaluators. Self-scores by trainees did not correlate well with scores by evaluators. Conclusions: SIC-Ex is the first assessment tool that provides evidence for incorporating the SIG guide framework for evaluation of resident competence. SIC-Ex is conceptually related to, but more specific than, CCG in evaluating serious illness conversation skills.

Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients.

PURPOSE: The purpose of this study was to explore the acceptability, applicability, and understandability of a promising advance care planning (ACP) web-based resource for use with oncology patients, and determine whether revisions to the website would be necessary before implementation into oncology care. The resource is called PREPARE ( www.prepareforyourcare.org ) and it had not been tested for use within oncology, but had previously been shown to influence the readiness of older, community-dwelling adults to engage in ACP behaviors. METHODS: This qualitative descriptive study included participants receiving cancer medications and one participant on watchful waiting post-chemotherapy (n = 21). Data were collected via cognitive interviewing, followed by a brief semi-structured interview to gather a meaningful account of the participants' experience with PREPARE. Content analysis resulted in a comprehensive summary of what participants liked and did not like about the resource, as well as suggestions for change. RESULTS: Overall, participants agreed PREPARE was acceptable, applicable, and understandable for cancer patients. A small number of participants had difficulty with the life-limiting language found within the website and this requires follow-up to determine whether the language causes distress or disengagement from ACP. These findings extend our understanding of barriers to engagement in ACP that appear unique to cancer patients receiving active treatment. CONCLUSIONS: Results indicated that PREPARE is a reflective, capacity-building ACP resource that was acceptable, applicable, and understandable for use in oncology. These findings offer direction for both research and practice.

Clinical Outcomes of Start-Low, Go-Slow Methadone Initiation for Cancer-Related Pain: What's the Hurry?

BACKGROUND: Methadone has been shown to be effective for cancer pain. Most published switching methods are complete in less than three days, requiring very close supervision, usually in an inpatient setting. This need for hospitalization is a barrier to access. We present a large retrospective study of slow outpatient methadone starts and describe our starting method. METHODS: Charts were reviewed of patients referred to the Pain and Symptom Management/Palliative Care clinics at the six BC Cancer Agency's regional centers that underwent initiation of methadone for analgesia over a 14-year period. Patient characteristics, method of start, and outcomes of methadone treatment were recorded. RESULTS: Of the 652 identified patients, we were able to determine outcomes of methadone initiation in 564 (86.5%). Among these, 422 (74.8%) were deemed successful initiations, as determined by whether or not the patient remained on methadone at follow-up with subjective improvement in pain control, on a stable dose of methadone. Of the unsuccessful trials, 97/142 were primarily due to adverse events, 16 of which were considered serious enough to require hospitalization, including two due to sudden cessation of opioid therapy leading to withdrawal. Some of the included adverse events were not necessarily causal from the initiation of methadone, for example, development of bowel obstruction or delirium. Only one death occurred from a deliberate overdose of multiple medications, including methadone. CONCLUSIONS: Initiation of methadone for analgesia in ambulatory cancer patients can be done safely in an outpatient setting using a start-low go-slow method, and can be expected to be helpful in ∼75% of patients. Discontinuation is more likely to be for side effects than for inadequate analgesia. Access to methadone therapy can safely be widened by slow initiation, avoiding more dangerous rapid switching protocols and reducing the need for hospitalization.

Oncologist Experience Implementing Goals of Care Discussions in Everyday Ambulatory Oncology Practice: Implications for Education.

Despite evidence that Goals of Care (GOC) discussions should occur early in the disease trajectory, the majority occur close to end of life. In a pilot, oncologists routinely initiated GOC discussions with all patients in their everyday ambulatory practice. Following the pilot, 9 of 12 eligible oncologists participated in semi-structured interviews about their experiences. Analysis resulted in the identification of seven principles of good GOC discussions embedded in the oncologists' interviews, four barriers to engaging in GOC discussions and foundational education needs. Participants believed that the appropriate trigger for a GOC discussion is a diagnosis of advanced cancer, not simply a diagnosis of cancer, and supported the importance of selective and strategic targeting of GOC discussions. The findings have informed the development of an education-based model for culture change within a province-wide cancer care system.

Caring at home until death: enabled determination.

PURPOSE: The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death. METHOD: A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death. RESULTS: Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person. CONCLUSIONS: Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.

On the road again: patient perspectives on commuting for palliative care.

OBJECTIVE: The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care. METHOD: The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire. RESULTS: Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems. SIGNIFICANCE OF RESULTS: Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home.

Dying at home is a goal promoted by many healthcare providers and governments as a way to enhance the dying experience for cancer patients and their family members. A key element to realizing this goal is the availability of a family member who is willing to provide care at home. Little research has been conducted on the factors that influence family caregivers' ability to cope with providing end-of-life cancer care at home. The purpose of this qualitative study was to describe factors influencing family caregivers' ability to cope with providing such care. An interpretive descriptive research design guided this study. Semistructured interviews with 29 active family caregivers were conducted and thematically analyzed. Our findings suggest 5 factors that influenced the caregivers' ability to cope: (1) the caregiver's approach to life, (2) the patient's illness experience, (3) the patient's recognition of the caregivers' contribution to his or her care, (4) the quality of the relationship between the caregiver and the dying person, and (5) the caregiver's sense of security. Findings provide important information to assist in informing health services and policies directed at enhancing family caregivers' coping abilities.