Association between Goals of Care Designation orders and health care resource use among seriously ill older adults in acute care: a multicentre prospective cohort study.

BACKGROUND: The Goals of Care Designation (GCD) is a medical order used to communicate the focus of a patient's care in Alberta, Canada. In this study, we aimed to determine the association between GCD type (resuscitative, medical or comfort) and resource use during hospitalization. METHODS: This was a prospective cohort study of newly hospitalized inpatients in Alberta conducted from January to September 2017. Participants were aged 55 years or older with chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, cancer or renal failure; aged 55-79 years and their provider answered "no" to the "surprise question" (i.e., provider would not be surprised if the patient died in the next 6 months); or aged 80 years or older with any acute condition. The exposure of interest was GCD. The primary outcome was health care resource use during admission, measured by length of stay (LOS), intensive care unit hours, Resource Intensity Weights (RIWs), flagged interventions and palliative care referral. The secondary outcome was 30-day readmission. Adjusted regression analyses were performed (adjusted for age, sex, race and ethnicity, Clinical Frailty Scale score, comorbidities and city). RESULTS: We included 475 study participants. The median age was 83 (interquartile range 77-87) years, and 93.7% had a GCD at enrolment. Relative to patients with the resuscitative GCD type, patients with the medical GCD type had a longer LOS (1.42 times, 95% confidence interval [CI] 1.10-1.83) and a higher RIW (adjusted ratio 1.14, 95% CI 1.02-1.28). Patients with the comfort and medical GCD types had more palliative care referral (comfort GCD adjusted relative risk (RR) 9.32, 95% CI 4.32-20.08; medical GCD adjusted RR 3.58, 95% CI 1.75-7.33) but not flagged intervention use (comfort GCD adjusted RR 1.06, 95% CI 0.49-2.28; medical GCD adjusted RR 0.98, 95% CI 0.48-2.02) or 30-day readmission (comfort GCD adjusted RR 1.00, 95% CI 0.85-1.19; medical GCD adjusted RR 1.05, 95% CI 0.97-1.20). INTERPRETATION: Goals of Care Designation type early during admission was associated with LOS, RIW and palliative care referral. This suggests an alignment between health resource use and the focus of care communicated by each GCD.

Comparison of the Management and Short-Term Outcomes between Patients with Advanced Cancer and Other End-of-Life Conditions Presenting to Two Canadian Emergency Departments.

Background: An increasing number of patients with end-of-life (EOL) conditions, particularly those with advanced cancer, are presenting to the emergency department (ED). Objectives: To assess the characteristics, management and short-term outcomes of ED patients with advanced cancer compared to patients with other EOL conditions. Methodology/Design: A secondary analysis of a prospective cohort study. Setting/Participants: Volunteer emergency physicians in two Canadian EDs identified presentations for advanced cancer and other EOL conditions with the aid of a modified screening tool March-August 2018. Results: Among the 663 presentations by patients with EOL conditions, 272 (41%) presented with advanced cancer. The majority of presentations for advanced cancer (81%) or other EOL conditions (77%) were by patients with unmet palliative care (PC) needs. Patients with advanced cancer were significantly less likely to have active goals of care (GOC) documented on their charts (53% vs. 75%; p < 0.001). While no significant differences were found between the groups, the majority of presentations involved imaging, investigations, consultations, and hospitalization. Presentations for advanced cancer were more likely to receive a postdischarge referral (38% vs. 23%; p < 0.001). Referrals to PC consultations or postdischarge referrals were infrequent. Regression analysis found that patients with advanced cancer were associated with shorter length of stay (LOS). Conclusions: The majority of presentations for advanced cancer or other EOL conditions involved significant resource use. Patients with cancer experienced shorter LOS; however, had less documentation of GOC and gaps in referrals to PC services were identified. Interventions should be explored to promote early GOC discussions and PC referrals in this patient group.

Comparison of characteristics and management of emergency department presentations between patients with met and unmet palliative care needs.

INTRODUCTION: This study examined emergency department (ED) presentations of patients with end of life (EOL) conditions and patients having met and unmet palliative care needs were compared. METHODS: Presentations for EOL conditions were prospectively identified and screened for palliative care needs. Descriptive data were reported as proportions, means or medians. Bi-variable analysis for dichotomous and continuous variables were performed by chi-squared and T-tests (p≤0.01), respectively. A multivariable logistic regression model identified factors associated with having unmet palliative needs and reported adjusted odds ratios (aOR) with 95% confidence intervals (CI). RESULTS: Overall, 663 presentations for EOL conditions were identified; 518 (78%) involved patients with unmet palliative care needs. Presentations by patients with unmet palliative needs were more likely to involve consultations (80% vs. 67%, p = 0.001) and result in hospitalization (69% vs. 51%, p<0.001) compared to patients whose palliative needs were met. Patients with unmet palliative care needs were more likely to have previous ED visits (73% unmet vs. 48% met; p<0.001). While medication, procedures, investigations and imaging ordering were high across all patients with EOL conditions, there were no significant differences between the groups. Consultations with palliative specialists in the ED (6% unmet vs. 1% met) and following discharge (29% unmet vs. 18% met) were similarly uncommon. Patients having two or more EOL conditions (aOR = 2.41; 95% CI: 1.16, 5.00), requiring hospitalization (aOR = 1.93; 95% CI: 1.30, 2.87), and dying during the ED visit (aOR = 2.15; 95% CI: 1.02, 4.53) were strongly associated with having unmet palliative care needs. CONCLUSIONS: Most ED presentations for EOL conditions were made by patients with unmet palliative care needs, who were significantly more likely to require consultation, hospitalization, and to die. Referrals to palliative care services during and after the ED visit were infrequent, indicating important opportunities to promote these services.

An Assessment of the Management of Patients with Advanced End-Stage Illness in the Emergency Department: An Observational Cohort Study.

Background: Presentations to the emergency department (ED) by patients with end-of-life (EOL) conditions for their acute care needs are common. Objectives: The objective of this study was to identify and describe the ED management across presentations to the ED for EOL conditions. Design: Prospective observational cohort study. Settings/Subjects: Emergency physicians in two Canadian ED's were asked to identify presentations by adult patients with EOL conditions using a modified screening tool. Measurements: Patient characteristics and ED management for each presentation were collected through chart review by trained research assistants. Descriptive analyses were conducted as appropriate and bivariate comparisons of dichotomous and continuous variables were completed using χ2 tests and using t test or Wilcoxon rank-sum test, respectively. Results: Physicians identified 663 ED presentations for EOL conditions, with advanced cancer (41%), dementia (23%), and chronic obstructive pulmonary disease (16%) being the most common EOL conditions. The majority of presentations involved consultations (77%), hospitalization (65%), and numerous investigations (97%), including blood work (97%) and imaging (92%). The majority of patients with EOL conditions had a history of ED visits (68%). Using a modified screening tool, 78% of presentations involved patients with unmet palliative care needs, but only 1% of presentations involved a palliative consultation or admission to a palliative care unit. Conclusion: Presentations to the ED for EOL conditions involve significant ED resources; however, only a handful of patients are referred to palliative services. Patients with EOL conditions are appropriate targets for palliative services and community support outside the ED.

Advance Care Planning Preferences and Readiness in Cirrhosis: A Prospective Assessment of Patient Perceptions and Knowledge.

Background: In 2014, the province of Alberta launched a campaign to promote public awareness of advance care planning (ACP) and its associated two-part documentation-a Goals of care designation (GCD, a medical order written by a health care practitioner detailing wishes for care) and a personal directive (PD, a document naming a surrogate decision maker). Notably, unlike the GCD, the PD can be self-initiated independent of a health practitioner. Objective: Two years after the campaign, we aimed to assess knowledge and recall of participation in ACP among cirrhosis patients. Design/Setting: Consecutive adult cirrhosis patients attending one of two specialty cirrhosis clinics in Edmonton, Alberta, were surveyed. Results: Ninety-seven patients were included. Mean model for end-stage liver disease was 12. Although 97% of patients indicated it was extremely important to know the reality of their illness, only 53% understood that cirrhosis would affect their future quality of life. Thirty-three percent of patients had completed a PD and 14% had completed a GCD. Seventy-eight percent of patients believed a GCD was important to them and 85% preferred to complete it in an outpatient clinic setting. Only a minority of patients who had taken the initiative to complete a PD in the community also had a GCD. Conclusions: Despite efforts to raise awareness of and educate Albertans about ACP, <20% of cirrhosis patients have a completed GCD. Additional strategic prioritization is required in both patients and providers to ensure that health practitioner-facilitated ACP is carried out as standard-of-care in all patients with cirrhosis.

Patient Views on Advance Care Planning in Cirrhosis: A Qualitative Analysis.

Aim: To investigate patient experiences and perceptions of advance care planning (ACP) process in cirrhosis. Methods: Purposive sampling was used to identify and recruit participants (N = 17) from discrete patient groups: compensated with no prior decompensation, decompensated and not yet listed for transplant, transplant wait listed, medical contraindications for transplant, and low socioeconomic status. Review and discussion of local ACP videos, documents, and experiences with ACP occurred in two individual interviews and four focus groups. Data were analyzed using inductive content analysis including iterative processes of open coding, categorization, and abstraction. Results: Three overarching categories emerged: (1) lack of understanding about disease trajectories and ACP processes, (2) roles of alternate decision makers, and (3) preferences for receiving ACP information. Most patients desired advanced care-planning conversations before the onset of decompensation (specifically hepatic encephalopathy) with a care provider with whom they had a trusting, preexisting relationship. Involvement of the alternate decision makers was of critical importance to participants, as was the use of direct, easy to understand patient education tools that address practical issues. Conclusion: Our findings support the need for early advance care planning in the outpatient setting. Outpatient clinicians may play a key role in facilitating these discussions.

Advance care planning (ACP) for specialists managing cirrhosis: A focus on patient-centered care.

Advance care planning (ACP) and goals of care designation (GCD) are being integrated into modern health care. In cirrhosis, uptake and adoption of these practices have been limited with physicians citing many perceived barriers and limitations. Recognizing the many tangible benefits of ACP and GCD processes in patients with life-limiting chronic diseases, the onus is on health practitioners to initiate and direct these conversations with their patients and surrogates. Drawing upon the literature and our experiences in palliative care and cirrhosis, we provide an actionable framework that can be readily implemented into a busy clinical setting by a practitioner. Conversation starters, visual aids, educational resources (for patients and practitioners), and videos of mock physician-patient scenarios are presented and discussed. Importantly, we have customized each of these tools to meet the unique health care needs of patients with cirrhosis. The inherent flexibility of our approach to ACP discussions and GCD can be further modified to accommodate practitioner preferences. CONCLUSION: In our clinics, this assemblage of "best practice tools" has been well received by patients and surrogates enabling us to increase the number of outpatients with cirrhosis who have actively contributed to their GCD before acute health events and are supported by well-informed surrogates. (Hepatology 2018;67:2025-2040).

What is stable pain control? A prospective longitudinal study to assess the clinical value of a personalized pain goal.

BACKGROUND: A universal consensus regarding standardized pain outcomes does not exist. The personalized pain goal has been suggested as a clinically relevant outcome measure. AIM: To assess the feasibility of obtaining a personalized pain goal and to compare a clinically based personalized pain goal definition versus a research-based study definition for stable pain. DESIGN: Prospective longitudinal descriptive study. MEASURES: The attending physician completed routine assessments, including a personalized pain goal and the Edmonton Classification System for Cancer Pain, and followed patients daily until stable pain control, death, or discharge. Stable pain for cognitively intact patients was defined as pain intensity less than or equal to desired pain intensity goal (personalized pain goal definition) or pain intensity ⩽3 (Edmonton Classification System for Cancer Pain study definition) for three consecutive days with <3 breakthroughs per day. SETTING/PARTICIPANTS: A total of 300 consecutive advanced cancer patients were recruited from two acute care hospitals and a tertiary palliative care unit. RESULTS: In all, 231/300 patients (77%) had a pain syndrome; 169/231 (73%) provided a personalized pain goal, with 113/169 (67%) reporting a personalized pain goal ⩽3 (median = 3, range = 0-10). Using the personalized pain goal definition as the gold standard, sensitivity and specificity of the Edmonton Classification System for Cancer Pain definition were 71.3% and 98.5%, respectively. For mild (0-3), moderate (4-6), and severe (7-10) pain, the highest sensitivity was for moderate pain (90.5%), with high specificity across all three categories (95%-100%). CONCLUSION: The personalized pain goal is a feasible outcome measure for cognitively intact patients. The Edmonton Classification System for Cancer Pain definition closely resembles patient-reported personalized pain goals for stable pain and would be appropriate for research purposes. For clinical pain management, it would be important to include the personalized pain goal as standard practice.

A Rapid Bedside Screen to Predict Unplanned Hospitalization and Death in Outpatients With Cirrhosis: A Prospective Evaluation of the Clinical Frailty Scale.

OBJECTIVES: Screening tools to determine which outpatients with cirrhosis are at highest risk for unplanned hospitalization are lacking. Frailty is a novel prognostic factor but conventional screening for frailty is time consuming. We evaluated the ability of a 1 min bedside screen (Clinical Frailty Scale (CFS)) to predict unplanned hospitalization or death in outpatients with cirrhosis and compared the CFS with two conventional frailty measures (Fried Frailty Criteria (FFC) and Short Physical Performance Battery (SPPB)). METHODS: We prospectively enrolled consecutive outpatients from three tertiary care liver clinics. Frailty was defined by CFS >4. The primary outcome was the composite of unplanned hospitalization or death within 6 months of study entry. RESULTS: A total of 300 outpatients were enrolled (mean age 57 years, 35% female, 81% white, 66% hepatitis C or alcohol-related liver disease, mean Model for End-Stage Liver Disease (MELD) score 12, 28% with ascites). Overall, 54 (18%) outpatients were frail and 91 (30%) patients had an unplanned hospitalization or death within 6 months. CFS >4 was independently associated with increased rates of unplanned hospitalization or death (57% frail vs. 24% not frail, adjusted odds ratio 3.6; 95% confidence interval (CI): 1.7-7.5; P=0.0008) and there was a dose response (adjusted odds ratio 1.9 per 1-unit increase in CFS, 95% CI: 1.4-2.6; P<0.0001). Models including MELD, ascites, and CFS >4 had a greater discrimination (c-statistic=0.84) than models using FFC or SPPB. CONCLUSIONS: Frailty is strongly and independently associated with an increased risk of unplanned hospitalization or death in outpatients with cirrhosis. The CFS is a rapid screen that could be easily adopted in liver clinics to identify those at highest risk of adverse events.

Patients with cirrhosis and denied liver transplants rarely receive adequate palliative care or appropriate management.

BACKGROUND & AIMS: Patients with cirrhosis who are receiving palliative care and are not eligible for liver transplantation (LT) are often hospitalized multiple times, with lack of expectations or understanding of death and dying. We evaluated how frequently these patients received appropriate and palliative care. METHODS: We performed a retrospective study of 102 consecutive adult patients (67% men; mean age, 55 years) who were removed from the list for or declined LT from January 2005 through December 2010 at the University of Alberta, Canada. Patients' medical records were reviewed to determine their access to palliative care and relief of symptoms, the appropriateness of the goals for their care, and their requirements for acute care services. RESULTS: The patients' median Model for End-stage Liver Disease score was 20, and median time from denial of LT to death was 52 days (range, 10-332 days). The most common reasons that patients were removed from the transplant wait list were noncompliance or substance abuse (26%) and severe illness or organ dysfunction (25%). After patients were removed from the list, 17% received renal replacement therapy, and 48% were subsequently admitted to the intensive care unit. Patients spent a median of 14 days (range, 6-33 days) in the hospital after they were removed from the transplant wait list. On the basis of the Edmonton Symptom Assessment System, 65% of patients had evidence of pain, 58% had evidence of nausea, 10% had depression, 36% had anxiety, 48% had dyspnea, and 49% had symptoms of anorexia. Twenty-eight percent of all the patients had documentation of do not resuscitate status on their charts, and only 11% were referred for palliative care. CONCLUSIONS: Patients with cirrhosis who have been removed from the wait list for LT are infrequently referred for palliative care (∼ 10% of cases), although a high percentage have pain or nausea. Goals of care and do not resuscitate status are rarely discussed. Improved planning of goals of care and access to palliative services are required for these patients.