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Evaluation of the CPR video decision aid with patients with end stage renal disease Kapell Brown, Cherie; Kryworuchko, Jennifer; Martin, Wanda Sep 12, 2018

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RESEARCH ARTICLE Open AccessEvaluation of the CPR video decision aidwith patients with end stage renal diseaseCherie Kapell Brown1, Jennifer Kryworuchko2* and Wanda Martin3AbstractBackground: People with end stage renal disease (ESRD) face important health-related decisions concerning end-of-life care and the use of life-support technologies. While people often want to be involved in making decisionsabout their health, there are many challenges. People with advanced illness may have limited or wavering ability toparticipate fully in decision-making conversations – or lack decisional capacity for making decisions. Additionally,they may have a limited understanding of CPR and tend to receive inconsistent information on the process andoutcome of CPR. Unfortunately, these discussions are often avoided. Shared decision-making approaches are anapproach to overcoming these challenges. The objectives of this research was to design, test, and analyze a novelCPR video decision aid (VDA) with nephrology patients and their families in a clinical setting.Methods: The Interprofessional Shared Decision-making Model was used as a framework to guide the research. Aprospective quasi-experimental design included pre/posttest measures of knowledge and confidence in decision-making, and posttest only measure of uncertainty about the decision.Results: Participant knowledge about CPR increased from a mean score of 4.8/9 (standard deviation [SD] = 1.65)before viewing the video to 7.5/9 (SD = 1.40) (p = 0.000) after viewing the video. Decisional self-efficacy improvedslightly from 84% pre intervention (SD 17.04, range 20–100) to 86% after the intervention (SD 14.13, range 39–100)(p = 0.005) for patient participants. Before the intervention, most patients (43/49; 86%) had an order to have CPR inthe physician orders and very few (7/49; 14%) had an order not to have CPR. Immediately after viewing the CPR-VDA and completing the values clarification worksheet, fewer 28/49 (57%) chose to have CPR, 13 (27%) chose notto have CPR and 8 (16%) were unsure.Conclusions: The CPR-VDA was feasible and acceptable to patients with ESRD, their families and the healthcareteam. The CPR-VDA positively affected decision-making: improving patient and family knowledge about CPR, clarityof values, patients’ decisional self-efficacy, the congruence between documented physician’s orders and patientchoice, quality of communication about CPR, while reducing decisional conflict (uncertainty) amongst patients,families, and physicians.Keywords: Decision-aid, Quality of communication, CPR, End-of-life, Shared decision-makingBackgroundPatients with end stage renal disease (ESRD) face im-portant health related decisions, such as decisions abouttreatment options, palliative end-of-life care and whetherlife-support technologies are wanted in their care [1].ESRD is the final stage of kidney disease where kidneysare working at less than 15% of their normal capacity,therefore requiring intervention to sustain life [2]. Allpatients with ESRD have had to make decisions throughthe course of their chronic illness, for example, aboutscreening and diagnostic tests, vascular access, or dialy-sis modalities. The use of an additional life supportivetechnology such as cardiopulmonary resuscitation (CPR),if cardiac or respiratory arrest occurs is another importantdecision for people with ESRD during their healthcarejourney. The aim of this study was to improve the qualityof communication during CPR decision-making processes* Correspondence: jennifer.kryworuchko@ubc.ca2School of Nursing and Centre for Health Services and Policy Research, TheUniversity of British Columbia, T275- 2211 Wesbrook Mall, Vancouver, BC V6T2B5, CanadaFull list of author information is available at the end of the article© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Kapell Brown et al. BMC Nephrology  (2018) 19:226 https://doi.org/10.1186/s12882-018-1018-yinvolving patients with ESRD, their families and thehealthcare team.Patients with ESRD have a higher incidence of cardiacarrest because dialysis treatment exacerbates cardiac dis-ease. Healthcare providers may offer CPR to try to re-store cardiac and respiratory function and prolong life[3]. Unfortunately, CPR does not work very well for pa-tients with advanced medical illness like ESRD and haspoor prognosis [4, 5]. Higher initial survival can be ob-served after cardiac arrest in a hemodialysis unit com-pared to other hospital settings and this may beattributed to availability of equipment, personnel, andvascular access [5]. However, overall survival after car-diac arrest for older adults, regardless of setting, withadvanced chronic illness such as kidney disease remainspoor, with less than 20% of patients who receive CPRsurviving to hospital discharge [6–8].Jones, Podolsky, and Green [9] argue that the healthcare system has not responded with sufficient education,engagement, and support in the decision-making process.As patients and family members increasingly are calledupon to make complex decisions, they are challenged by alack of medical knowledge, low health literacy, and uncer-tainty about their prognosis. Indeed, for medical, social,cultural, and legal reasons, many physicians are reluctantto meaningfully engage patients nearing end-of-life in ad-vance care planning [9]. What has followed is a potentiallyunwanted increase in technological care at the end-of-life.For example, when asked, patients maintain they wouldprefer less aggressive care if death were likely in the shortterm [10]. ESRD patients and their families feel they arenot always part of discussions around prognosis, treat-ment goals, and end-of-life care [11, 12]. Almost 30% ofpatients over 75 years of age prefer to stop dialysis becausethey experience unacceptably poor quality of life and ther-apy intolerance [13]. There is also increasing awarenessthat resources and spending at end-of-life are not wellcorrelated with quality of life or quality of care [14].Canadians, older patients, and health care professionalsincreasingly are focused on meaningful advance careplanning and promoting a shared, informed decision-making process about the use of technology at theend-of-life.The CPR video decision aid (VDA) is a novel approachto shared decision-making preparing patients, families,and their healthcare professionals for conversationsabout the CPR decision. Patient decision aids are re-sources that can identify evidence-based healthcare op-tions, their benefits and harms, and further assistpatients to communicate their values and preferences totheir healthcare provider [15]. With the use of decisionaids, patients have a better understanding about care op-tions and anticipated outcomes, have improve perceivedrisk, experience a good match between values andchoices, and show a reduction in indecision and regretthat leads to decisional conflict [16].This study consisted of field-testing the CPR-VDA in acommunity context with ESRD patients who havealready made a similar complex decision to receive dialy-sis. The study was part of a larger research programaimed at improving the quality of communication duringdecision-making processes involving patients with ad-vanced illness, their families, and the healthcare team.The aim of this study was twofold: to improve patientand family member knowledge and involvement in deci-sions about CPR, and to ensure that CPR was providedonly when wanted. The hypothesis was that theCPR-VDA would be acceptable to patients and feasibleto use to prepare ESRD patients for shared decision-making about CPR. The video would also improve pa-tient and family knowledge, clarify values, and thus im-prove congruence between documented orders andpatient choice. The patient and their family memberwould experience minimal residual uncertainty aboutthe decision thereby improving confidence to make thedecision.MethodsDesignA prospective quasi-experimental design included pre/posttest measures of knowledge and confidence indecision-making, and posttest only measure of uncer-tainty about the decision (decisional conflict). ResearchEthics Board approval was obtained prior to commen-cing the study (BEH 13–200) and all participants pro-vided written informed consent. The study was alsoapproved by the local patient and family advisory counciland health authority partners.Setting and participantsParticipants were recruited between late summer andmid-winter 2015 in an urban inpatient and outpatienthemodialysis center. At these centers, 260 patients re-ceive hemodialysis 6 days per week. A convenience sam-ple of eight physicians who cared for patients with ESRDreceiving dialysis was recruited from the hemodialysiscenters. Eligible physicians were staff physicians (ne-phrologists) or residents on their nephrology rotation.Recruited physicians and members from the renal healthcare team (social worker, clinical nurse specialist, andunit manager) helped identify eligible patients in thehemodialysis program and/or family members and intro-duced the study. The research nurse then determinedthe final eligibility of patients and family members whoexpressed desire to participate.Eligible patients were over 55 years of age, had stage 5renal failure, were dependent on dialysis, and could com-municate in English. Patients were invited to identify theKapell Brown et al. BMC Nephrology  (2018) 19:226 Page 2 of 11adult ‘family’ member who knew them best, includingpartners, significant others, and/or close friends. The fam-ily member had to be 18 years or older, speak and under-stand English, have capacity to make healthcare decisions,have accompanied the patient to dialysis at least once, andhave provided assistance to the patient without pay.Ideally, we wanted to recruit dyads consisting of a patientand their family member with whom they shared health-care decisions. However, willing patients who could con-sent were included even without the participation of afamily member. Patients without decisional capacity wereinvited to assent to participate if their family member wasa participant.InterventionThe CPR-VDA is a seven-minute video designed for par-ticipants to independently view on a portable screen.The video presents information about CPR and the al-ternative option (comfort care) as well as informationabout the patient experience and important health out-comes. A CPR decision worksheet, which included avalues clarification exercise, tailored the generic patientdecision aid format to the CPR decision, and was com-pleted with the study nurse. A plain language script forthe CPR-VDA was a significant adaptation from an earlierpaper-based CPR information tool [17], and was informedby a rapid systematic review process of CPR outcomesdata. In collaboration with the research team, a cinema-tographer produced the final video CPR-VDA that is pub-licly available at http://vimeo.com/48147363. The studynurse provided non-directive support to help participantscomplete the questionnaires thus preparing them for thediscussion with the physician, consistent with the role of adecision coach in a shared decision framework [18].ProcedureThe study nurse conducted interviews during a sched-uled dialysis treatment. The interview commenced withthe patient and/or family member once dialysis was initi-ated and the patient remained physically stable (Table 1).After obtaining consent, a brief chart review was con-ducted to check documented CPR orders and pertinenthealth history. Interviews occurred in a semi privateplace with patients, family, and staff in close proximity.The first part of the questionnaires included; demo-graphics with a self-reported frailty index and health lit-eracy test, pre-knowledge test about CPR and pre-intervention self-efficacy questions. Following this seriesof questions, the patient and/or family member viewedthe seven-minute CPR-VDA video on an iPad screen.The interview continued with acceptability questions re-garding the CPR-VDA video, post-knowledge test ques-tions about CPR, post-decision self-efficacy questionsand series of questions to assess any decision conflict re-lated to the CPR decision. The study nurse asked pa-tients their CPR preference after viewing the CPR-VDAand completing the values clarification worksheet.OutcomesAcceptability was assessed using eight validated questionsabout use, amount of information, the length, the clarity,balance in presentation, willingness to recommend toTable 1 Data Collection StrategyData source Time period for data collection Collection toolParticipating Patient /FamilyPre VDA intervention PART A: Demographics, Frailty Index, Health Literacy ScoreKnowledge about CPRDecisional Self-efficacyCPR-VDA Intervention View CPR-VDA (http://vimeo.com/48147363)Observation Matrix (i.e., elements of capacity, fatigue,attention)Post VDA intervention PART B: Acceptability SurveyKnowledge about CPRDecisional Conflict ScaleDecisional Self-efficacy ScaleCPR WorksheetStudy Nurse Patient / Family / Physicianparticipants discuss CPR decisionOPTIONParticipating Physician Post VDA intervention anddiscussionPART A: Demographics (completed once only per physician)PART B: Physician Survey (completed after engaging in eachdiscussion about CPR: Decisional Conflict Scale)Medical record ofparticipating patientAt enrollment (consent) and 1week from date of enrollmentChart Abstraction Tool (co-morbid illnesses, the presence of‘Goals of Care’ orders, ‘DNR’ orders, ‘Resuscitation Care-plan’orders and any order related to CPR)Study Nurse Initiated at time of enrollment until end ofparticipationField notesKapell Brown et al. BMC Nephrology  (2018) 19:226 Page 3 of 11others and overall suitability for decision-making [19, 20].Knowledge about CPR was tested using nine questions de-veloped by the research team. Self-Efficacy is the partici-pants’ self-confidence or belief in their abilities indecision-making, and was measured using the DecisionSelf-Efficacy Scale [21]. The scale gave a total score out of100, and a higher score indicates higher self-efficacy fordecision-making. Used to evaluate a decision aid forwomen with osteoporosis, the reliability of the scale was0.92 and it correlated with decisional conflict subscales offeeling informed (r = 0.47) and supported (r = 0.45) [21].Decision conflict was also assessed, which occurs when apatient is uncertain about what course of action is best forthem [22]. The perception of uncertainty is related to modi-fiable factors such as feeling uninformed, being unclearabout personal values for the options, or feeling unsup-ported in decision-making [22]. Decision conflict was mea-sured using the low literacy version of the Decision ConflictScale for patient/family [22] where scores lower than 25/100 were associated with decision implementation andscores over 37.5/100 were associated with delayed deci-sions. The scale has a reliability of 0.78 and has been usedin many studies of patient decision aids [16, 22]. Decisionalconflict was also measured using the SURE test [23] in thevalues clarification worksheet. The reliability of this scale is0.65 [23]. Measurement of relevancy of the CPR decisionfor the patient at this stage of their healthcare journey wasasked before and after viewing the video. After partici-pant(s) completed the pre and posttest questionnaires, theywere then invited to complete the paper based values clari-fication worksheet.Once all patient/family questionnaires were completed,the physician caring for the patient discussed CPR with thepatient and/or family member to assess whether or not theywanted CPR in the event of a cardiac or respiratory arrest.The research nurse observed this discussion and completedan Observing Patient Involvement (OPTION) tool thatassessed physician and patient involvement in shareddecision-making. The OPTION instrument was developedto evaluate shared decision-making communication andthe reliability of this scale was 0.66 in a study evaluatingphysician encounters in primary care settings [24]. Re-sponses on a five-point scale ranged from ‘the behavior isnot observed’ to ‘observed and executed to a high standard’.The total summed score range from zero to 48 with higherscores indicating greater competency in shared deci-sion-making [24]. Physicians completed a final ques-tionnaire to report on the communication withpatient/family. During the interview time, the studynurse used an observation matrix and field notes. Thematrix captured observations such as time of day, dis-tractions, and local environment, before and after theCPR-VDA intervention. The data collection strategy issummarized in Table 1.Statistical analysisBaseline characteristics and outcomes were reportedusing proportions for categorical variables, and meansand standard deviations (SD) for continuous variables.For each outcome of interest, analysis was conducted atthe participant level using descriptive statistics and whenappropriate, a paired sample t-test for comparing means(before/after). Data management and statistical analyseswere conduct using IBM SPSS Statistics (Version 23).ResultsDemographicsOf those invited to participate, 8/8 (100%) physicians ac-cepted, 49/53 (92%) patients accepted, and 8/9 (89%) familymembers accepted (Table 2). Of the five people who de-clined to participate, four were not interested and one pa-tient was unable to complete the interview due to declininghealth status. There were seven patient/family memberdyads and one family member who participated withoutthe patient. Physicians were mostly experienced clinicalnephrology staff and some had either palliative care experi-ence or training about goals of care communication. Fewerthan half of patients were female, half were married, andthe average age was 67 years. Most patients lived in theirown home in an urban setting where they received dialysis.Still, one third of the patients were from a rural area andtravelled into the city for treatment. Patients had relativelyhigh health literacy score despite having high school or lesseducation. Over half of patients considered themselves vul-nerable to severely frail and most had prior communicationabout CPR, which varied in formality.Feasibility and acceptabilityAll patient and family member participants viewed theCPR-VDA and completed the values clarification work-sheet during the interview time. Each had a follow-up dis-cussion with their physician, although the discussion didnot always occur on the same day as the initial interview.After viewing the CPR-VDA and completing the work-sheet, participants were clear about the necessary decision,knew the options, could articulate their values, and coulddiscuss these in varying degrees of detail. They were alsoable to identify their support person(s), decision-makingneeds and make a plan for next steps. During the videoviewing, challenges included poor lighting, disruptive noise,physical discomfort (i.e., vascular access in their arm / nee-dle in arm) positioning for treatment, fatigue, thirst, andconfusion over wording. Multiple interruptions in the busyenvironment affected some people’s ability to attend to de-tail during the interview / intervention process resulting in6% (3/49) of patients needing to review parts of the video.While working through the values clarification worksheet,participants revealed emotional struggles surrounding theircurrent health state and concerns about the future.Kapell Brown et al. BMC Nephrology  (2018) 19:226 Page 4 of 11Participants were asked how relevant the decision aboutCPR was for them before and after the intervention, andwhile the average rating was that it was relevant to them(2/5), the mean score increased from 2.1 to 2.3 (p = 0.01)after the intervention. Ninety-eight percent (56/57) of pa-tient and family member participants rated the CPR-VDATable 2 Demographics - Patient and FamilyDemographic Patient n = 49 Family n = 8Age M (range, SD) 67 (55–91, 9.66) 62 (48–72, 8.19)Female n (%) 21 (43%) 5 (63%)Marital StatusMarried or living as married 28 (57%) 8 (100%)Widowed 10 (21%) 0Never married 5 (10%) 0Divorced or separated 6 (12%) 0Rural 15 (31%) 5 (63%)Urban 34 (69%) 3 (37%)Living ArrangementHome 36 (74%) 8 (100%)Retirement residence 8 (16%) 0Long-term care or nursing home 4 (8%) 0Assisted living 1 (2%) 0Highest EducationElementary school or less 3 (6%) 0Some high school 17 (35%) 1 (12.5%)High school graduate 11 (24%) 4 (50%)Some college/trade school 8 (16%) 0College/trade school diploma 2 (4%) 0Some university 4 (8%) 1 (12.5%)University graduate 4 (8%) 1 (12.5%)Graduate degree 0 1 (12.5%)Health Literacy (out of 8) M (range, SD) 6.61 (0–8, 2.42) 8 (8, 0)Importance of Religion n (%)Extremely important 6 (12%) 1 (12.5%)Very important 16 (33%) 3 (37.5%)Somewhat important 14 (29%) 3 (37.5%)Not very important 8 (16%) 1 (12.5%)Not at all important 4 (8%) 0Don’t know 1 (2%) 0Prior communication about CPR? Yes 30 (61%) 6 (75%)Patient FrailtyVery fit 0Well 3 (6%)Managing well 19 (39%)Vulnerable 18 (36%)Mildly frail 5 (11%)Moderately frail 2 (4%)Severely frail 2 (4%)M mean, SD standard deviationKapell Brown et al. BMC Nephrology  (2018) 19:226 Page 5 of 11as good to excellent. Seventy-seven percent (44/57) statedit contained the right amount of information, 75% (43/57)thought the information in the video was completely bal-anced, and 93% (53/57) found the information presentedabout CPR to be clear. The CPR-VDA was helpful in mak-ing decisions about CPR for 89% (51/57) of participantsand almost everyone (98%) would recommend the videoto other people who are considering CPR (Table 3).Effectiveness of the decision aidParticipant knowledge about CPR increased from amean score of 4.8/9 (standard deviation [SD] = 1.65) be-fore viewing the video to 7.5/9 (SD = 1.40) (p = 0.000)after viewing the video. Decisional self-efficacy improvedslightly from 84% pre intervention (SD 17.04, range 20–100) to 86% after the intervention (SD 14.13, range 39–100) (p = 0.005) for patient participants; however, familymembers’ scores remained high in both periods (Table 4).Decisional conflict scores were relatively low overall(scores could range from 0 [no decisional conflict] to100 [extremely high decisional conflict]); they werehigher amongst patients (mean score of 13.57, SD =18.34, range 0–70) but very low amongst family mem-bers (mean score of 1.25, SD = 3.54, range 0–10). Deci-sional conflict was also measured for patients using theclinical SURE test on the values clarification worksheet:14 (28%) patients reported experiencing decisional con-flict while 36 (72%) reported no decisional conflict.Before the intervention, most patients (43/49; 86%)had an order to have CPR in the physician orders andvery few (7/49; 14%) had an order not to have CPR. Im-mediately after viewing the CPR-VDA and completingthe values clarification worksheet, fewer 28/49 (57%)chose to have CPR, 13 (27%) chose not to have CPR and8 (16%) were unsure. Final chart review 1 week later re-vealed that fewer patients wanted CPR 36/50 (72%) andmore patients 14 (28%) had an order not to have CPR(p = 0.007). As is typical in clinical practice, those partic-ipants who are unsure will have the default order to haveCPR placed in their chart.After the intervention, a physician discussed the CPRdecision with the patient and/or family member withvariable quality of patient involvement as assessed usingOPTION (M = 25.66 SD 7.41, range 9–47, maximumscore possible 48). These discussions were held duringthe patient’s dialysis treatment with others (i.e., family,nurse, pharmacist, social work, clinical coordinator, aswell as other patients and their families) present in 31/49 (62%) patient conversations. Only the physician andparticipants were directly involved in the CPR conversa-tion. This is usual practice as the dialysis unit is mostlyan open observation unit. In the exit survey, physiciansreported the CPR decision as “very relevant” to their pa-tients (M = 3.60, SD = 0.53, range = 2–4), were “verysatisfied” with the discussion they had after the interven-tion (M = 3.18, SD = 0.79, range = 1–4), and reportedthat the overall discussion was “easy” to have with theirpatient (M = 0.80, SD = 0.80, range = 0–3) (Table 4).DiscussionThis was the first study to evaluate the use of theCPR-VDA specifically with patients diagnosed withESRD. Patients with ESRD and their family membersvalued the CPR-VDA as a tool to help inform and con-sider decisions about CPR. The initial plan was to recruitpatient and family dyads to participate in the study.However, it was extremely challenging to engage bothpartners during routine dialysis treatments. Those familymembers who did participate had special appointmentsfor them to be at a specific treatment. Patients and fam-ily members found the CPR-VDA acceptable to use,even when patients’ illness and treatment caused diffi-culty attending to all aspects of the decision-makingprocess all of the time. For the most part, people ratedthe intervention excellent, contained the right amount ofinformation, balanced, clear, helpful, and would recom-mend it to others.The CPR-VDA significantly improved knowledge aboutthe CPR decisions. When combined with the values clari-fication worksheet, the CPR-VDA helped patients con-sider the options from their own perspective, integratetheir own values, highlighted other supports and consider-ations, supported their confidence in decision-making,and reduced decisional conflict. Our observations are con-sistent with results of a recent systematic review about theeffectiveness of patient decision aids [16]. Patient decisionaids as a class of intervention are known to improve un-derstanding about healthcare and treatment choices andresulting outcomes, understand risks better, integratevalues with their choices, and reduce uncertainty and re-morse about the decision [16].Patients were effectively able to utilize the CPR-VDAdespite lower formal educational levels. They were con-tinuously able to attend to details in a hectic treatmentenvironment while experiencing considerable healthchallenges, and varying levels of frailty. Video format pa-tient decision aids may support patients with lowerhealth literacy due to their oral format and flexibilitysince participants could start, stop, and rewind thevideo. Furthermore, participants were supported by bothan explicit values clarification exercise and a study nurseacting as a decision coach. These findings support evi-dence from other studies suggesting video decision aidshelp patients and families make informed medical treat-ment decisions [25–27].As decision coach, the study nurse provided importantsupport to patients and families. Patient participants haddifficulty navigating questionnaires due to vascularKapell Brown et al. BMC Nephrology  (2018) 19:226 Page 6 of 11access in their arm, poor lighting, positioning fortreatment, and fatigue. Thus the study nurse had adual role in supporting them to view the video andcould not help but to form a therapeutic relationshipthat included empathetic listening. She was able tofocus on subtle changes in patient health status andadjust pacing or timing accordingly, as well as beingable to give further clarification when needed. Acti-vating other members of the healthcare team besidesthe physician may also be of benefit, but was notcaptured in this efficacy study.Physicians reinforced the work of the study nurse andthe CPR-VDA intervention during their discussion withthe patient after the intervention. Thus, the study nurseas decision coach had an explicit and formal role on theinterprofessional team regarding decision-making. Opti-mizing the decision-making environment to increase apatient’s ability to engage meaningfully in DM was aTable 3 Acceptability of CPR-VDAPatient n = 49Pre Post p-valueRelevance of the CPR decision M (range, SD) (Not relevant 0–1–2-3-4 Very relevant) 2.1 (0–4, 1.1) 2.3 (0–4, 1.1) 0.01Item Patient n = 49 n (%) Family n = 8 n (%)“How would you rate the CPR video decision aid?”Poor 0 0Fair 1 (2%) 0Good 19 (38%) 3 (37.5%)Very good 20 (40.8%) 4 (50%)Excellent 9 (18.4%) 1 (12.5%)“How would you rate the amount of information in the video?”Much less than I needed 0 0A little less than I needed 4 (8.2%) 0About the right amount 37 (75.5%) 7 (87.5%)A little more than I needed 6 (12.2%) 0A lot more than I needed 2 (4.1%) 1 (12.5%)“How balanced was the video’s information about CPR?”Clearly slanted towards having CPR 4 (8.2%) 0A little slanted towards having CPR 4 (8.2%) 1 (12.5%)Completely balanced 38 (77.6%) 5 (62.5%)A little slanted towards not having CPR 3 (6.1%) 2 (25%)Clearly slanted towards not having CPR 0 0“How clear was the information in the video?”Everything was clear 29 (59.2%) 7 (87.5%)Most things were clear 17 (34.7%) 0Some things were clear 2 (4.1%) 1 (12.5%)Many things were unclear 1 (2%) 0“How helpful was the video in helping you make decisions about CPR?”Very helpful 28 (57.1%) 4 (50%)Somewhat helpful 16 (32.7%) 3 (37.5%)A little helpful 5 (10.2%) 0Not helpful 0 1 (12.5%)“Would you recommend this video to other people who are considering CPR?”I would definitely recommend it 40 (81.6%) 6 (75%)I would probably recommend it 8 (16.3%) 2 (25%)I would probably not recommend it 1 (2%) 0I would definitely not recommend 0 0Kapell Brown et al. BMC Nephrology  (2018) 19:226 Page 7 of 11Table 4 Effectiveness of the Decision AidOutcome Patient n = 49 Family n = 8Pre Post p-value Pre Post p-valueCPR test questions n (%) correct answers1. When the heart stops beating, brain death willoccur in: several minutes.23 (47%) 40 (81%) 5 (63%) 6 (75%)2. CPR includes the following treatments:pressing hard and fast on the breastboneto pump blood through the heart to the body.39 (80%) 46 (94%) 7 (88%) 8 (100%)3. If CPR is successful and the heart restartsthe person: usually needs a machine to helpwith breathing, medicines, and fluids whiletrying to recover in ICU (Intensive Care Unit).18 (37%) 39 (80%) 1 (13%) 6 (75%)4. The most serious possible harm fromthe heart stopping and needing to have CPR is:severe brain damage from lack of oxygen32 (65%) 42 (86%) 4 (50%) 8 (100%)5. When CPR is effective it will: restart the heartbut have absolutely no effect on other medical conditions.25 (51%) 39 (80%) 8 (100%) 8 (100%)6. If 100 people have a chronic condition(heart failure, kidney failure, chronic lung disease)and their heart stops, how many will surviveCPR and recover well enough to leave the hospital?:very few people (10 out of 100).15 (31%) 43 (88%) 3 (38%) 8 (100%)7. If the patient decides NOT to have CPR: theycan receive treatments to relieve suffering AND forother medical conditions if wanted.25 (51%) 43 (88%) 6 (75%) 7 (88%)8. The healthcare team wants to talk to hospitalizedpatients about the CPR decision because: the rightdecision about CPR depends on what is mostimportant to the individual patient in addition tothe patient’s medical conditions.28 (57%) 43 (88%) 5 (63%) 7 (88%)9. Of all the people who survive CPR, howmany will have severe brain damage?: a few survivors.30 (61%) 34 (69%) 5 (63%) 7 (88%)Knowledge (out of 9) M (range, SD) 4.8 (0–8, 1.65) 7.5 (4–9, 1.40) 0.000 5.6 (4–7, 1.31) 8.1 (6–9, 0.99) 0.000Decisional Self-Efficacy (0 = extremely low;100 = extremely high) M (range, SD)84 (20–100,17.04)86 (39–100,14.13)0.005 86 (52–100,15.98)92 (77–100,8.23)0.203CertaintyDecisional conflict scale (0 = no conflict;100 = high conflict) M(range, SD)13.57 (0–70,18.34)1.25 (0–10,3.54)SURE n (%)4 (no decisional conflict) 36 (72%)3 6 (12%)2 3 (6%)1 3 (6%)0 (high decisional conflict) 2 (4%)Preference n (%)Have CPR 28 (57%)No CPR 13 (27%)Unsure 8 (16%)Physician Order n (%)Have CPR = 1 43 (86%) 36 (72%)No CPR = 2 7 (14%) 14 (28%)M (range, SD) 1.14 (1–2, 0.35) 1.28 (1–2, 0.45) 0.007Kapell Brown et al. BMC Nephrology  (2018) 19:226 Page 8 of 11clear role for the study nurse providing decision supportin this study, and could be taken on by nurses who arepart of the clinical team. In this case, the study nursewas an experienced ICU nurse with additional decisioncoaching training. It is likely that dialysis nurses wouldneed additional preparation or release time to take onthe additional role that is fully within their scope ofpractice. Nurses have a clear ethical and professional ob-ligation to support healthcare decision-making [28] andtheir expertise in communications and establishingtherapeutic relationships could be utilized to facilitatehealthcare decision-making.While there is much to gain from understanding theuse of decision-aids with patients in the dialysis setting,there are limitations to this study. The homogenoussample limits generalization of results to other popula-tions. Recruitment of dyads of patient and family mem-ber was challenging because they were busy and notalways present at dialysis appointments. Question fatiguewas evident among the participants and future studieswith this patient population may wish to utilize video oraudio recordings to limit fatigue in answering the ques-tions and eliminate the need of the study nurse manuallyrecording answers during the interview. Although therewas evidence of above average shared decision-makingduring the interview and most physicians alluded to theCPR-VDA, the assessment of the patient-physician inter-view was a very limited measurement as it only consid-ered one interaction between the patient and physician.The conversation was taken out of context of any previ-ous relationship development and / or past conversa-tions about the subject of CPR. Measured over time andacross interactions, the overall quality of shareddecision-making may have been far greater. The studydesign would be further strengthened by adding a (ran-domized) control group to determine the effectiveness ofthe CPR-VDA intervention. In this study, the CPR-VDAwas not compared to usual practice or to a controlgroup, and did not randomize the selection of thesubjects.Preparing each member of the healthcare team to sup-port the decision-making process may further supportshared decision-making. The lack of team member par-ticipation was particularly evident by the lack of supportprovided to physicians by other healthcare team mem-bers. Physician members of the healthcare team workingat the dialysis center had no instruction or practice usingthe CPR-VDA and only received a brief overview of theresearch project from the study nurse. Training in theuse of shared decision-making and decision aids mayhave improved uptake and use of CPR-VDA in the clin-ical setting. Future interventions and pragmatic effect-iveness evaluation could focus on ensuring thathealthcare team members are supported to implementthe CPR-VDA.Finally, although this study was formulated aroundhow to best support decision-making about the CPR de-cision, the decision-making process around life-savinginterventions or end-of-life care is not just about arriv-ing at the decision. The decision-making process in-volves patients and families receiving support for theirgrief while receiving information about loss, potentialloss, or change of health status. The use of the decisionaid seemed to open space for other conversations aboutend-of-life and grieving, which were supported by thestudy nurse. Anticipatory bereavement was first de-scribed by Lindemann [29] as observations of prepara-tory grief work done by wives with husbands at war andfurther conceptualized as a process to prepare terminallyill patients and their families for death thus aiding griev-ing [30]. However, most of the research around anticipa-tory bereavement involves caregivers with very littleresearch focusing on the patients experience withend-of-life decision-making and anticipatory bereaveTable 4 Effectiveness of the Decision Aid (Continued)Outcome Patient n = 49 Family n = 8Pre Post p-value Pre Post p-valueObservation of 50 single interactions betweeneach patient/family and physicianOPTION (score out of 48) M (range, SD) 25.66 (9–47, 7.41)Physician Exit SurveyRelevance of the CPR decision formy patient M (range, SD)(Not relevant 0-1-2-3-4 Very relevant)3.60 (2–4, 0.53)Satisfaction felt with discussion aboutCPR with patient M (range, SD)(Not at all 0-1-2-3-4 Completely)3.18 (1–4, 0.79)Overall experience with the CPR discussionM (range, SD) (Very easy 0-1-2-3-4 Very Difficult)0.80 (0–3, 0.80)Kapell Brown et al. BMC Nephrology  (2018) 19:226 Page 9 of 11ment [31]. A future study may be able to reveal connec-tions between the use of patient and family decisionsupport around end-of life care and anticipatorybereavement.ConclusionsThe CPR-VDA was feasible and acceptable to patientswith ESRD, their families and the healthcare team. TheCPR-VDA positively affected decision-making: improv-ing patient and family knowledge about CPR, clarity ofvalues, patients’ decisional self-efficacy, the congruencebetween documented physician’s orders and patientchoice, quality of communication about CPR, while re-ducing decisional conflict (uncertainty) amongst pa-tients, families, and physicians. The CPR-VDA wasuseful to patients regardless of their ability to engage inmeaningful conversations with their family and thehealthcare team about whether or not to have CPR aspart of their care.AbbreviationsCPR: Cardiopulmonary resuscitation; CPR-VDA: Cardiopulmonary resuscitationvideo decision aid; ESRD: End stage renal disease; IP-SDM: Interprofessionalshared decision-making model; VDA: Video decision aidAcknowledgementsWe would like to thank the patients, family members and healthcareprofessionals who participated in this study.FundingThe research project was supported by The Heart and Stroke Foundation ofCanada as part of a larger project, and CKB was supported by an AlliedHealth Grant from The Kidney Foundation of Canada. Funding agencies hadno role in the design, enrollment, data collection, analysis, or writing ofmanuscript or decision to publish the research. The content is solely theresponsibility of the authors.Availability of data and materialsThe datasets generated and/or analysed during the current study are notpublicly available due to concerns protecting personal information ofparticipating physicians/patients/families.Authors’ contributionsJK and CKB designed the study, and CKB implemented the study with theguidance and support of JK. JK and CKB met with stakeholders to gainsupport for the study in each practice setting. CKB recruited, enrolled, andcollected data from all participants. CKB inputted and analyzed the data withsupport from JK and WM. JK, CKB, and WM assisted with feedback and editsto the manuscript, and preparing it for publication. All authors read andapproved the final manuscript.Ethics approval and consent to participateUniversity of Saskatchewwan Research Ethics Board approval (BEH-13-200)was obtained prior to commencing the study and all participants providedwritten informed consent. Saskatoon Health Region Nephrology(Hemodialysis) patient and family advisory council and Nephrology divisionpartners also approved the study.Consent for publicationNot Applicable – all data is in aggreate formCompeting interestsThe authors declare that they have no competing interests.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Author details1Manager 5A Surgery and Ambulatory Care, St. Paul’s Hospital, 1702 20thStreet West, Saskatoon, SK S7M OZ9, Canada. 2School of Nursing and Centrefor Health Services and Policy Research, The University of British Columbia,T275- 2211 Wesbrook Mall, Vancouver, BC V6T 2B5, Canada. 3College ofNursing, University of Saskatchewan, PO Box 6, 104 Clinic Place, Saskatoon,SK S7N 2Z4, Canada.Received: 5 September 2017 Accepted: 28 August 2018References1. Murray MA, Bissonnette J, Kryworuchko J, Gifford W, Calverley S. Whosechoice is it? 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On death and dying. London: Tavistock/Routledge; 1989.31. Nielsen MK, Neergaard MA, Jensen AB, Bro F, Guldin M-B. Do we need tochange our understanding of anticipatory grief in caregivers? A systematicreview of caregiver studies during end-of-life caregiving and bereavement.Clin Psychol Rev. 2016;44:75–93.Kapell Brown et al. BMC Nephrology  (2018) 19:226 Page 11 of 11


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