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. Author manuscript; available in PMC: 2023 Feb 1.
Published in final edited form as: Gynecol Oncol. 2021 Dec 16;164(2):288–294. doi: 10.1016/j.ygyno.2021.12.009

Promoting timely goals of care conversations between gynecologic cancer patients at high-risk of death and their providers

Brittany A Davidson 1,2, Allison M Puechl 1, Catherine H Watson 1, Stephanie Lim 3, Luke Gatta 3, Karen Monuszko 4, Kerry Drury 3, Emma S Ryan 4, Shelley Rice 5, Tracy Truong 6, Jessica Ma 7, Steve Power 8, Weston Jordan 8, Kelli Kurtovic 3, Laura J Havrilesky 1,2
PMCID: PMC8799508  NIHMSID: NIHMS1765020  PMID: 34922770

Abstract

Objective

We designed a multi-faceted intervention to increase the rate of outpatient goals of care (GOC) conversations in women with gynecologic cancers who are at high-risk of death.

Methods and Materials

A multidisciplinary team developed an educational program around GOC conversations at end-of-life and chose criteria to prospectively identify patients at high-risk of death who might benefit from timely GOC conversations: recurrent or metastatic endometrial, cervical or vulvar cancer or platinum-resistant ovarian cancer. Gynecologic oncology provider consensus was built regarding the need to improve the quality and timing of GOC conversations. Eligible outpatients were prospectively identified and providers alerted pre-encounter; timely GOC documentation within 3 visits of high-risk identification was tracked. Our institution concurrently and subsequently tracked GOC documentation during the last 6 months of life among all established oncology patients.

Results

Of 220 pilot period high-risk patients (96 pre- and 124 during pilot period 2017–2018), timely GOC discussion documentation increased from 30.2% to 88.7% (p < 0.001) and this increase was sustained over time. In the post-pilot period (2019–2020), among patients seen by oncologists during last 6 months of life, compared to other cancer types, gynecologic cancer patients had a higher rate of GOC documentation (81% versus 9%; p<0.001), a lower rate of receiving chemotherapy during the last 14 days of life (2% vs 5%; p=0.051), and no difference in end-of-life admissions (29% vs 31%; p=NS).

Conclusions:

Implementation of systematic outpatient identification of high-risk gynecologic oncology patients is feasible, sustainable, and increases the timely conduct of GOC conversations.

Keywords: gynecologic cancer, goals of care, quality

Introduction

Goals of care (GOC) discussions are individualized conversations between patients, their families, and their healthcare providers to inform the direction of medical care. GOC discussions are underpinned by the patient’s own priorities and consider the current clinical environment to determine the extent or limitation of particular healthcare interventions.1 Timely communication about GOC enables patients and families to make decisions about the care and quality of life they desire, facilitating the delivery of patient-centered care, a pillar of high-quality medicine defined by the Institute of Medicine in 2001. 24 The receipt of goal-concordant care improves satisfaction, reduces stress on caregivers and the psychological impact of loss on family members.3,5 Despite their known benefits, GOC conversations are often initiated too late with gynecologic cancer patients. In a 2013 study, our group found that 35% of women dying from ovarian cancer received their first documented GOC discussion during final hospital admission in the last month of life, identifying a gap in current practice pattern.6

End-of-life (EOL) quality metrics constitute a tangible target for quality improvement in the management of gynecologic cancers. GOC discussions in our division conducted more than 30 days before death have been associated with lower rates of chemotherapy within 14 days of death, hospice admission <3 days before death, and dying in an acute care setting.6 With identification of a gap in care and dedicated physician champions, we designed a pilot initiative to determine if the prospective, outpatient identification of high-risk gynecologic cancer patients results in earlier GOC conversations.

Methods

Pilot intervention and data collection

To improve end-of-life transitions and deliver high-quality cancer care7, a team of gynecologic oncology and palliative care providers developed a multi-faceted pilot intervention, including prospective identification of patients in the outpatient setting, to improve the rate of timely goals of care (GOC) conversations in patientswho are considered at high-risk of death within 6 months. Our primary objective was to improve the rate of timely GOC conversations, defined as percentage of high-risk gynecologic cancer outpatients participating in GOC discussions within 3 encounters after an “index encounter” at which high-risk status was identified. We wished to increase the GOC conversation rate, a process measure, from 30% to over 75% by May 2018. High-risk of death was determined using the following inclusion criteria: 1) recurrent/progressive platinum-resistant ovarian cancer, 2) other recurrent/metastatic gynecologic cancers with evidence of disease. Secondary outcomes were the following outcome measures: hospice acceptance, death within 30 days of admission, ICU admissions, days from ICU admission to death, days from hospice acceptance to death, days from first GOC discussion to death, chemotherapy within 14 days of death. Provider satisfaction was a secondary balancing measure. SQUIRE 2.0 guidelines for reporting quality improvement initiatives were followed8; the project was granted Institutional Review Board exempt status. A consensus-based GOC documentation template was designed to prompt key components of the discussion (Figure 1), including the patient’s understanding of: curability/prognosis, conditions that might lead to discontinuation of anticancer treatment, orientation to hospice services, and resuscitation preference. The timing of the next planned GOC discussion and a list of individuals present for the GOC discussion are included. The template is standardized, inserted into electronic medical record (EMR) clinical notes, and is auto-filed under an Advance Care Planning (ACP) section.

Figure 1: Advance Care Planning Discussion Template.

Figure 1:

The goals of care discussion template was utilized in the EPIC electronic medical record. Providers insert it into progress notes via a dot phrase. Each smart element can be completed by the provider, if relevant. The components capture the most common components of goals of care discussions, including patient-specific perspectives and goals

There were 4 key parts of the intervention: 1. Education of clinicians regarding the importance of goal-concordant cancer care; 2. Consensus building on a GOC documentation template; 3. Prospective identification of high-risk patients; 4. Outpatient clinician notification. Interventions were introduced sequentially (Figure 2). In mid-2017, the initiative was presented to gynecologic oncology providers during clinical conferences; data regarding the institutional dearth of early GOC discussions[7] were presented and education provided to the division regarding end-of-life quality indicators. Provider consensus was built around the objectives of improving the quality, timing, and documentation of outpatient GOC discussions. From August 2017-May 2018, outpatient clinic schedules were reviewed by QI team prior to each provider’s clinic day to prospectively identify patients meeting high-risk criteria. Providers were alerted daily of scheduled high-risk outpatients via an email sent by trainee investigators the day before clinic and highlighted on the schedule printout in clinic each day.

Figure 2. Statistical process control chart of goals of care discussion documentation in the advance care planning section of the electronic medical record on gynecologic oncology service during the last 6 months of life.

Figure 2.

Annotations denote dates of specific interventions: 1. Educational conference for all faculty regarding quality of end of life care, importance of goals of care conversations, and introduction of the GOC template; 2. Initiated monthly quality improvement conference to review end of life care opportunities; 3. SPIKES educational conference on delivering bad news for all gynecologic oncology faculty; 4. Transitions of Care advanced practice provider hired. CL, center line; UCL, upper control limit; LCL, lower control limit.

Two cohorts were compared on the primary outcome: (1) Pre-pilot: consecutive outpatients January-December 2016 who met high-risk criteria at an “index” encounter during that year; (2) Pilot: consecutive outpatients August 2017-May 2018, identified prospectively before the index encounter. Data were collected and maintained using Research Electronic Data Capture software (REDCap; Vanderbilt University, TN). For patients seen during the pre-pilot period, documentation of discussing any topic listed in the GOC template was recorded, even without use of the template. During the pilot period, the GOC template must be used for documentation to be counted. In November 2017, blinded individual primary outcome performance data were shared with providers with comparison to peers (Fig. 4). SAS 9.4 (SAS Institute Inc, Cary, NC) was used for pilot statistical analysis. Baseline characteristics and study outcomes were compared using Student’s t-test or Wilcoxon rank sum test for continuous and Chi-square test or Fisher’s exact test for categorical variables.

Figure 4: Goals of care conversations held by each provider during the first three months of the pilot quality improvement initiative.

Figure 4:

This data was shared with the individual gynecologic oncology providers. Feedback was provided in a manner that blinded providers to the performance of their individual peers but allowed them to compare their personal performance to that of the group.

In mid-2018, gynecologic oncology providers were invited to complete a survey in Qualtrics (Provo, UT) regarding their experience with the QI intervention (balancing measure) as part of an interdepartmental initiative to increase rates of GOC discussions (Figure 3). The survey questions applicable to this study focused on the usability and accuracy of the outpatient trigger in their clinical experience and whether or not they would like to continue to utilize this trigger post-pilot and recommend it to other specialties. Qualitative hour-long interviews were conducted with 10 patients following a GOC discussion to understand their perspectives on these conversations and are the subject of a separate, qualitative analysis (data not presented).

Figure 3. Survey of gynecologic oncology clinicians on the usability and acceptability of an outpatient trigger to identify patients in need of a goals of care discussion.

Figure 3.

This was part of a broader survey of healthcare workers across the health system to improve advanced care planning and goals of care discussions.

Post-pilot period interventions and data collection

In mid-2018 the pilot period ended and we ceased pilot database collection. At this time, screening of clinic lists for high-risk gynecologic oncology patients was re-assigned to experienced nurses who had been oriented to the initiative during the pilot period.

During and following the pilot period, several additional interventions supported our primary objective (Figure 2). In mid-2018, a QI team faculty member (BD) completed instructor certification for VitalTalk, a course teaching clinicians effective, evidence-based communicaton skills. The Vital Talk course is now completed by all gynecologic oncology fellows and faculty. In early 2019, a monthly divisional conference was established to review opportunities to improve end-of-life care. A SPIKES program training session for delivering serious news, led by a palliative communications expert, was held for gynecologic oncology faculty and advanced practice providers (APPs) in February20199 and again in May 2021. In July 2020, we formally established the role of a “Transitions of Care APP (TC-APP)” who screens for high-risk outpatients, sees patients in all settings (hospitalized, emergency department, or outpatient) to ensure continuity, works collaboratively with the Palliative Care consult team, and works to improve the timing of GOC conversations in all settings.

Additional retrospective analyses were performed in the post-pilot period using EMR data. In early 2019, an institution-wide custom algorithm was designed to track GOC documentation in the EMR ACP tab for “established” oncology patients who had 3 or more provider encounters at the authors’ institution during the last twelve months of life. This algorithm allowed us to retrospectively track ACP section documentation on gynecologic cancer patients who were seen before, during, and following the pilot period, and additionally allowed comparisons between gynecologic oncology and other oncology services, including medical, surgical, hematologic, radiation, neurologic, and gynecologic oncology. Multi-disciplinary second opinion consults were excluded; two of three encounters must have been on the same clinical service to qualify a patient as “established”. A statistical process control chart was created using JMP (Version 15.0.0; SAS Institute Inc., Cary, NC) to describe the ACP note rate during the final 6 months of life among established gynecologic cancer patients while annotating specific interventions including those made during the pilot period and afterward (Figure 2). Categorical variables were compared using the Chi-square test.

Results

Pilot period analysis

220 patients (96 pre- and 124 post-implementation) met pilot inclusion criteria (Table 1). Timely GOC discussions, as measured by investigator review of provider notes, occurred with 30.2% of pre-implementation and 88.7 % post-implementation patients (p<0.001). Time from first GOC discussion to death was longer post-implementation (283 versus 128 days, p<0.001). There were no differences between cohorts in the percentage accepting hospice, type of hospice, 30 day hospital mortality, days from last admission to death, days from hospice acceptance to death, or time from last chemotherapy to death (Table 2).

Table 1:

Characteristics of pilot study population

Pre-implementation (N=96) Post-implementation (N=124) Total (N=220) p value

Age at recurrent cancer diagnosis, mean (SD) 66.7 (11.8) 63.4 (12.4) 64.9 (12.2) 0.0471
 Median [Q1, Q3] 67.0 [61.0, 75.0] 64.0 [56.5, 72.5] 66.0 [59.0, 73.0]
 Range (37.0–88.0) (26.0–91.0) (26.0–91.0)
Race 0.0012
 White 51 (53.1%) 87 (70.2%) 138 (62.7%)
 Black 27 (28.1%) 33 (26.6%) 60 (27.3%)
 Other 4 (4.2%) 2 (1.6%) 6 (2.7%)
 Unknown 14 (14.6%) 2 (1.6%) 16 (7.3%)
Ethnicity 1.0002
 Not Hispanic or Latino 92 (95.8%) 119 (96.0%) 211 (95.9%)
 Hispanic or Latino 1 (1.0%) 2 (1.6%) 3 (1.4%)
 Unknown or Not Reported 3 (3.1%) 3 (2.4%) 6 (2.7%)
Diagnosis 0.2542
 Platinum resistant ovarian cancer 48 (50.0%) 56 (45.2%) 104 (47.3%)
 Recurrent endometrial 41 (42.7%) 50 (40.3%) 91 (41.4%)
 Metastatic or recurrent vulvar 0 (0.0%) 4 (3.2%) 4 (1.8%)
 Metastatic or recurrent cervical 7 (7.3%) 14 (11.3%) 21 (9.5%)

SD: Standard deviation; Q1: First quartile; Q2: Second quartile; GOC: Goals of care; ICU: Intensive Care Unit

1

Student’s T-Test

2

Fisher’s exact test

Table 2:

Pilot study outcomes before versus after the implementation.

Before implementation (N=96) After implementation (N=124) Total (N=220) p value

At least 1 GOC discussion within first 3 visits 29 (30.2%) 110 (88.7%) 139 (63.2%) <0.0011
Number of GOC discussions within first 3 visits <0.0012
 Missing 3 0 3
 0 64 (68.8%) 14 (11.3%) 78 (35.9%)
 1 17 (18.3%) 72 (58.1%) 89 (41.0%)
 2 10 (10.8%) 34 (27.4%) 44 (20.3%)
 3 2 (2.2%) 4 (3.2%) 6 (2.8%)
Number of GOC discussions, median [Q1, Q3] 1.0 [0.0, 2.0] 2.0 [1.0, 3.0] 2.0 [1.0, 3.0] <0.0013
 Missing 1 0 1
 Mean (SD) 1.2 (1.2) 2.5 (1.7) 1.9 (1.6)
 Range (0.0–6.0) (0.0–10.0) (0.0–10.0)
At least 1 hospital admission 81 (84.4%) 104 (83.9%) 185 (84.1%) 0.9191
Accepted hospice 73 (76.8%) 86 (70.5%) 159 (73.3%) 0.2941
 Missing 1 2 3
Type of Hospice 0.6631
 Missing 0 1 1
 Home 62 (84.9%) 70 (81.4%) 132 (83.0%)
 Inpatient 11 (15.1%) 15 (17.4%) 26 (16.4%)
Death 96 (100.0%) 109 (87.9%) 205 (93.2%) <0.0012
Death within 30 days of hospital admission 37 (38.5%) 52 (47.7%) 89 (43.4%) 0.1871
 Missing 0 15 15

Among those who died
N = 96 N = 109 N = 205

Days last admission to death, median [Q1, Q3] 35.0 [14.5, 98.0] 28.0 [10.0, 67.0] 31.0 [12.0, 84.0] 0.2393
 Missing 12 14 26
 Mean (SD) 85.5 (128.1) 84.9 (182.4) 85.1 (158.8)
 Range (0.0–812.0) (0.0–1124.0) (0.0–1124.0)
Days hospice acceptance to death, median [Q1, Q3] 22.0 [14.0, 40.0] 29.0 [13.0, 59.0] 25.5 [13.5, 50.0] 0.5203
 Hospice acceptance 73 86 159
 Missing 1 2 3
 Mean (SD) 50.8 (74.7) 54.8 (93.7) 53.0 (85.3)
 Range (1.0–341.0) (1.0–708.0) (1.0–708.0)
Time first GOC discussion to death, median [Q1, Q3] 69.5 [26.0, 177.0] 195.0 [102.5, 405.0] 139.0 [55.0, 312.0] <0.0013
 Missing 22 1 23
 Mean (SD) 127.9 (143.9) 282.7 (234.6) 219.8 (216.1)
 Range (1.0–637.0) (16.0–966.0) (1.0–966.0)
Days from last chemotherapy to death, median [Q1, Q3] 80.0 [47.0, 151.0] 89.0 [48.0, 215.0] 85.0 [47.0, 198.0] 0.3683
 Missing 5 3 8
 Mean (SD) 166.9 (291.5) 166.2 (195.1) 166.5 (243.7)
1

Chi-Square test

2

Fisher’s exact test

3

Wilcoxon rank sum test

SD: Standard deviation; Q1: First quartile; Q2: Second quartile; GOC: Goals of care; ICU: Intensive Care Unit

Surveys were returned by 9/12 (75%) of gynecologic oncology providers (7 physicians, 2 APPs) during the pilot period. Two-thirds (6/9; 67%) agreed that notification accurately identified patients who needed a GOC conversation; Eight providers (88%) agreed that notification improved the delivery of patient care, was valuable to their clinical care and was not burdensome to their daily work. Similarly, the majority of providers would like to continue this process and would recommend to other specialties.

Post-pilot analysis

Figure 2 depicts the rate of GOC documentation within the ACP section of the electronic medical record during the last 6 months of life, during a time frame that includes the pre-pilot, pilot, and post-pilot periods. This rate rose at the outset of the pilot intervention in August 2017 and has persisted since completion of the pilot period in 2018. Of note, the ACP documentation rate was 0% in the pre-pilot period despite an observed 30% rate of documentation in provider notes because the auto-filing of GOC templated notes to the ACP section did not exist before August 2017.

During 2019–2020, established gynecologic cancer patients had an 80.9% ACP GOC documentation rate during the last 6 months of life. Of those with documented GOC in this time frame, only 1.9% received chemotherapy in the last 14 days.

Discussion

Our ongoing multi-faceted initiative is temporally associated with improvements in the timely engagement of high-risk gynecologic cancer outpatients in GOC conversations, serving to increase the time from first GOC conversation to death. It has also proven sustainable with over 80% patients having timely GOC conversations, and been viewed favorably by our providers. This is clinically meaningful; in a prior study, 19% of deceased gynecologic cancer patients had prior GOC outpatient conversations documented.10 Early GOC discussions have previously been associated with improved quality of life, lower medical cost, emergency room utilization and intensive care admissions.6,11,12 While our pilot project did not achieve differences in these metrics, institution-wide tracking in 2019–2020 revealed a low rate of chemotherapy administration (2%) for gynecologic oncology patients during the last 2 weeks of life. This low rate is important as the National Quality Forum endorses lower use of chemotherapy in the last 14 days as a quality metric.13 Our observed rate compares favorably to patients with non-gynecologic cancers who are treated at our institution (5%) and previously published rates of 7–10% at our and other institutions.6,14,15

In a separate analysis of our pilot cohort, women who made a decision to discontinue treatment while still outpatient had a significantly lower probability of dying in the hospital and twice as much time between the last chemotherapy treatment and death, compared to those not making an outpatient decision.16 An emphasis on more nuanced communication methods and patient education regarding end-of-life concepts may be needed to advance these important quality metrics.

Physicians are often hesitant to discuss prognosis with patients for a variety of reasons.17 By clearly defining a priori the clinical eligibility criteria for GOC conversations in each cancer type, our initiative overcame the challenge of prognostication, one of the most common reasons physicians give when GOC discussions are not performed. However, other barriers were not specifically addressed by the intervention, including patient mistrust of physician recommendations, a tendency of physicians and patients toward “positive thinking,” and patient anxiety regarding death.14,18 Ongoing steps in our GOC initiative include annual educational offerings, design of automated EMR prompts, and continuous reassessment of end-of-life quality metrics.

A limitation of the current study is that we report two different methods of analysis. During the pilot period we performed direct chart reviews to assess for and compare GOC documentation before and after the intervention, but this data collection was not sustainable longer term. To assess the longer term success of our initiatives, we subsequently engaged an institution-wide coding algorithm that recognized only the presence of documentation in the ACP section of the EMR. This algorithm likely missed some GOC topic documentation that was not placed into the ACP section. However, our institution has prioritized use of the ACP section to facilitate communication between providers of multiple specialties and in multiple clinical settings; our division’s providers are largely accepting of this priority, as shown by our survey results. Additional communication interventions occurred during the study period and may have played a role in the increasing rates of GOC discussions in the post-implementation period. With increasing demands on clinic staff, our outpatient trigger has now been converted to an automated trigger in the electronic record to ensure sustainability moving forward.

Timely goals of care discussions are a critical piece in the delivery of high-quality, goal-concordant cancer care at the end of life. Our study demonstrates the feasibility, acceptability, and effectiveness of an intervention designed to increase the conduct and documentation of these conversations. Further work is needed to to address other high-quality cancer care metrics at the end of life.

Highlights:

  • Timely goals of care (GOC) discussions are critical in the delivery of high-quality, goal-concordant cancer care.

  • Processes to identify high-risk patients result in increased conduct/documentation of GOC discussions near the end of life.

  • These clinical work flow processes were well-received by physicians and advanced practice providers.

Acknowledgements:

Dr. Anthony Gallanos for his expertise in palliative care and guidance in concept development

Funding sources:

The Duke Biostatistics, Epidemiology and Research Design Methods Core’s support of this project was made possible in part by CTSA Grant (UL1TR002553) from the National Center for Advancing Translational Sciences NCATS) of the National Institutes of Health (NIH), and the NIH roadmap for Medical Research. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of NCATS or NIH. Jessica Ma’s effort was supported by the US Department of Veterans Affairs Office of Academic Affiliation postdoctoral fellowship and the Durham VA Center of Innovation to Accelerate Discovery and Practice Transformation (CIN 13-410). Both the Fellowship and Center are funded by the US Department of Veterans Affiairs, which had no involvement in data collection, analysis, and interpretation of results.

Footnotes

Conflict of interest: No author has a COI pertinent to the work presented.

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