- Email: [email protected]
My Life, My Way: A Quality Improvement Program to Increase Advance Care Planning in a Racially and Ethnically Diverse Patient Population
Vol.
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No.
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2019
Journal of Pain and Symptom Management
1
Brief Quality Improvement Report
My Life, My Way: A Quality Improvement Program to Increase Advance Care Planning in a Racially and Ethnically Diverse Patient Population Alan R. Roth, DO, FAAFP, FAAHPM, Angelo Canedo, PhD, Raisa Balabanova, BS, and Vandana Chauhan, PhD Jamaica Hospital Medical Center, Richmond Hill, New York, USA
Abstract Background. A multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP). Measures. Number of eligible patients who completed an ACP form. Intervention. Projects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community. Outcomes. The intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%. Conclusion. Multilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population. J Pain Symptom Manage 2019;-:-e-. Ó 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Intervention, quality improvement, advance care planning, end-of-life planning, cultural competency
Key message This article describes an intervention to increase ACP participation in a diverse, urban community.
Background The U.S. elderly population (65þ) is not only growing rapidly but also becoming significantly more racially and ethnically diverse.1 With increased immigration as the primary driving force, it is projected that, by 2030, one in three older adults will be from a minority group.2 As old age and minority status are associated with an increase in acute and long-term care use, the nation’s changing elderly population presents an increasing strain on the U.S. health care system.2
Address correspondence to: Alan R. Roth, DO, FAAFP, FAAHPM, Jamaica Hospital Medical Center, 8900 Van Wyck Expressway, Richmond Hill, NY 11418, USA. E-mail: [email protected] Ó 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
To address this issue, policy makers, health insurance companies, and health care organizations show increasing interest in advance care planning (ACP), which is widely regarded as having the ability to improve the appropriateness, quality, and utilization of health care among the elderly.3e5 However, owing to factors such as limited English language proficiency, low health literacy, and culturally informed beliefs and preferences about end-of-life care, minority elders are much less likely than their white counterparts to partake in ACP-related behaviors.2,6 Organization-based interventions are associated with an increase in ACP discussions, advance directive completion, and improved perceptions of ACP.3e5 However, to date, most interventions have been implemented in health care organizations that serve primarily white patients, whereas others targeted only a single
Accepted for publication: October 17, 2019.
0885-3924/$ - see front matter https://doi.org/10.1016/j.jpainsymman.2019.10.015
2
Roth et al.
ethnic group. As such, the results of past interventions may not be generalizable to diverse, urban settings, which are becoming more representative of U.S. health care organizations, and as such, offer limited guidance for policy and practice. The aim of the present intervention was to increase ACP participation in a racially and ethnically pluralistic patient population at an urban community hospital.
Intervention Development of Intervention The present intervention was guided by the Systems Approach to Health Care Delivery,7 in which the health care system is divided into four ‘‘nested’’ levels: 1) the individual patient; 2) the care team, which includes professional care providers, the patient, and family members; 3) the organization that supports the work of care teams; and 4) the environment in which organizations, care teams, and individual patients operate. This theoretical framework suggests that although it is possible to achieve a small, limited impact by focusing on only one of the four levels of the health care system, the greatest and longestlasting impact will be realized by acting on all four levels simultaneously.7 Similarly, targeting solely one level of the system may inadvertently discount the barriers that exist on the other levels, which may act as impediments to progress.7 Current literature is largely in favor of such an approach to ACP, with the most successful interventions being those that targeted more than one stakeholder in the health care system.4 As such, the current intervention targeted simultaneously the patients, the health care providers, the organization, and the community served by the organization.
Intervention Setting Jamaica Hospital Medical Center (JHMC) is an urban community teaching hospital located in Richmond Hill, New York. JHMC offers numerous inpatient and outpatient services and operates 10 ambulatory care centers that are located throughout its primary service areas. The primary service areas of the hospital and the ambulatory care centers contain Jamaica, Southwest Queens, and East New York, with an approximate population of 800,000 residents. Of those residents, 40% are black/African-American, 28% are Hispanic nonwhite, 22% are white, and 16% are Asian.8 The primary service areas make up approximately 80% of all patient encounters at JHMC. The communities that contain JHMC’s primary service areas have a population of approximately 880,000
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residents. Approximately 43% of the population was born outside of the U.S., with the greatest proportion of foreign-born residents being of Latin American origin (28%), followed by Asian/Islander (12%), European (5%), and African (3%).9 Approximately 44% of the population speaks a language other than English at home.9
Primary Outcome Measures The aim of the intervention was to increase patient participation in ACP, which is an iterative and continuous process that is composed of three core elements: 1) consideration of patient goals, preferences, and values; 2) discussion of goals and treatment options with a health care provider; and 3) the documentation of patient wishes in a legal document.4 An indicator that a patient has engaged in all three of the aforementioned elements is the completion of an ACP form, which was chosen as the primary outcome measure of this intervention. The intervention used four categorical ACP forms: 1) Living Will; 2) Health Care Proxy; 3) Medical Orders for LifeSustaining Treatment (MOLST); and 4) Do-NotResuscitate (DNR)/Do-Not-Intubate (DNI) Orders.
The Intervention Community Level. Public engagement and education can effect changes in the health care system.5 However, there is currently little public engagement in ACP. A notable exception is The Conversation Project, which is a public campaign for the promotion of end-of-life discussions between patients, family members, and health care providers. To engage and educate the community served by JHMC, the present intervention, based largely on The Conversation Project, was branded ‘‘My Life, My Way’’ and a logo was created by JHMC’s Public Affairs Department. Using this logo, two educational brochures were created. One brochure was a conversation guide for patients, whereas the other detailed the various ACP forms available to patients. In the first month of the intervention, the brochures were made available in all patient settings, including JHMC’s ambulatory care centers. In addition to the brochures, a five-minute animated video was created and uploaded to JHMC’s web site. Considering JHMC’s diverse patient population, all educational materials avoided culturally specific references and medicolegal terminology. Translation services were made available upon request.
Organization Level Two months before the start of the intervention, the Chairman of Family Medicine delivered a presentation to the organization’s leadership on the critical importance of ACP and proposed a hospital-wide quality
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No.
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2019
Quality Improvement Program to Increase Advance Care Planning
improvement program to increase participation in ACP. Two weeks after the presentation, a planning session was held among administrative and clinical leadership, during which a hospital-wide strategic plan for increasing participation in ACP was developed. September 1, 2016 was set as the official start date of program. After the planning session, an organization-wide workflow was created for engaging patients in ACP, with the primary aims of educating the patient on ACP, providing an opportunity for discussion with a health care provider, and providing the opportunity to complete an ACP form. Concurrently, ACP forms were standardized and providers were instructed to exclusively use the four advance directive forms. JHMC’s electronic health record, Epic, was updated with new builds to allow for the documentation of discussions and ACP documents, and on the start date of the intervention, made available across time and settings to all health care providers within the organization. Finally, new billing codes were created to capture revenue from insurance companies such as Medicare for ACP discussions.
Provider Level Grand rounds were held in the first month of the intervention, which included an in-depth discussion of the four types of ACP forms and an introduction to the new organization-wide workflow. Attendance was mandatory for all residents and primary care providers. After the grand rounds, three hospital-wide trainings were conducted throughout the course of the intervention. The trainings were led by a team of consultants trained by the Institutes for Healthcare Improvement. The consultant team was composed of a nurse, physician, and spiritual leader, which allowed for training to address all elements of ACP. The trainings utilized lectures, discussions, and role-play and covered the topics of chronic disease management, prognostication, life-sustaining technologies, ethics, medicolegal issues, and patient characteristics that relate to ACP. During the training session, providers were able to practice initiating and maintaining ACP discussions. Because physicians often report having insufficient time for ACP discussions, training was extended to all support staff to provide them with the ability to conduct ACP discussions. This included nurses, care managers, social workers, and patient navigators. After the first training session, certain primary care providers were appointed as the ambassadors of their respective hospital-based units or ambulatory care centers and made responsible for the education and training of support staff. After the trainings, providers received conversation guides, which included general guidelines for
3
conducting ACP discussions and specific strategies for approaching patients from certain racial, ethnic, and cultural backgrounds. Providers were instructed to ask questions about the patient’s cultural beliefs and to involve the patient as an informed participant in ACP discussions. Providers were instructed to ask patients if they preferred to involve family members in their decision making. Finally, because JHMC employs many providers from the community which it serves, many health care providers are culturally similar to their patients. In selecting providers to hold ACP discussions with patients, providers were instructed to consider their personal characteristics, including race, ethnicity, religion, and language, and how they would impact their ability to establish rapport with the patient. In most cases, providers were ‘‘matched’’ with patients they were most culturally similar to.
Patient Level A new workflow required that every patient aged 55 years and over be targeted for ACP activities in the inpatient, outpatient, and ambulatory care settings. Every patient was provided with an educational brochure on ACP and the New York State Patient Rights packet. Patients were then asked if they have any type of ACP form. Patients who indicated that they had an ACP form had the document collected, scanned, and uploaded to Epic. Patients who did not have any type of ACP form were shown a brief animated video. This was done to introduce the patient to the topic of ACP and to avoid overburdening the patient with a sensitive topic. Epic builds that were created in February 2018 show that the animated video was shown 3455 times over the course of five months in the final stages of the intervention. After being shown the video, patients were asked if they were interested in meeting with a health care provider for an ACP discussion. For those patients who agreed, a consult was scheduled with a primary care provider, social worker, or palliative care clinician. Patients who declined to meet with a health care provider had their response documented in Epic. Over the course of the intervention, approximately 21,680 patients had an ACP discussion and 3800 patients had a palliative care consult.
Outcomes Data for patient encounters were collected from Epic to include data from two years before the start of the intervention (September 1, 2014 to August 31, 2016) and two years after the start of the intervention (September 1, 2016 to August 31, 2018). Over the course of the intervention, 39,080 patients aged 55
4
Roth et al.
Table 1 Patient Characteristics Age in yrs, mean (SD) Gender (n, %) Male Race (n, %) Black/African-American/Afro-Caribbean Asian/Pacific Islander White Hispanic white Non-Hispanic white Ethnicity (n, %) Hispanic Non-Hispanic Preferred language (n, %) English Religion (n, %) Catholic Christian Hindu Baptist Muslim
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Table 2 Completion of ACP Forms Before and After Intervention 71 (11.6) 17,712 (45) 13,613 (35) 7917 (20) 8258 (21) 6577 (17) 10,314 (26) 28,766 (74) 28,029 (71) 14,264 4593 3072 2752 2439
(36) (12) (8) (7) (6)
years and over had an encounter with the hospital or its ambulatory care network. The mean age of the patients was 71 years (SD ¼ 11.6) and 17,712 (45%) identified as male. More than one-third (38%) of patients were white, 35% were black, and 20% were Asian. Over a quarter (26%) of patients identified as Hispanic. There was a total of 80 different languages spoken among the patients and 11,051 (29%) indicated a non-English language as their preferred language. While 48 different religions were represented among the patients, the largest proportion of patients identified as Catholic (36%), followed by Christian (12%), Hindu (8%), Baptist (7%), and Muslim (6%) (Table 1). In the two years before the start of the intervention, 41,846 unique patients had an encounter with JHMC. Of those patients, 308 (<1%) had a Living Will; 1077 had MOLST (3%); 54 had DNR/DNI orders (<1%); and 403 had a Health Care Proxy (<1%). In the two years after the start of the intervention, 39,080 unique patients had an encounter with JHMC. Of those patients, 22,644 (60%) had a Living Will; 3220 (8%) had MOLST; 1419 (4%) had a DNI/DNR order; and 3792 (10%) had a Health Care Proxy. Two years after the start of the intervention, the number of patients with a Living Will increased by 59%; MOLST by 5%; DNR/DNI orders by 3%; and Health Care Proxy by 9% (Table 2). Because some of the documents uploaded to Epic were completed before the intervention, some ACP forms in the EHR had an upload date that is different from the completion date. Epic reporting does not have the capabilities to distinguish between the forms that were completed before and after intervention. However, a randomly selected sample of 200 ACP forms, which were manually examined for their completion date, showed that 10 forms were
Total patients Living Will Health Care Proxy MOLST DNR/DNI orders
Preintervention 9/1/14e8/31/16
Postintervention 9/1/16e8/31/18
41,846 308 (<1%) 403 (<1%) 1077 (3%) 54 (<1%)
39,080 22,644 (60%) 3792 (10%) 3220 (8%) 1419 (4%)
ACP ¼ advance care planning; MOLST ¼ Medical Orders for Life-Sustaining Treatment; DNR ¼ Do-Not-Resuscitate; DNI ¼ Do-Not-Intubate.
completed before the start of the intervention, while the remaining 190 forms were completed during the intervention.
Lessons Learned Involving hospital leadership in the intervention was vital to establishing the program’s importance, especially during its seminal period. An organizationwide mission helped to align JHMC staff with the program’s goals. In addition, it helped to establish an evidence-based framework from which the intervention was implemented. Using this framework, the intervention targeted the four levels of the health care system, being the patients, providers, organization, and community. Intervening on the community level was perhaps the most difficult component of the intervention, owing to the extensive resources such efforts generally require. In urban communities, there is significant need for increased public engagement in ACP. Studies show that minority patients often fail to participate in ACP because they consider the topic to be uncomfortable, or simply because they are not aware of its existence.4 Providing educational materials can be an effective component of public engagement in ACP; however, all materials must be appropriate for the health literacy, language proficiency, and cultural beliefs of elderly patients. Cultural sensitivity was an important component of the intervention. This intervention targeted cultural sensitivity in the training of health care providers because practitioners generally report that cultural barriers prevent them from actively engaging patients in ACP discussions. Provider training dedicated a significant portion of time to learning about the various cultural beliefs of JHMC patients and their impact on end-of-life planning. Although the intervention resulted in an increase in ACP document completion, not all targeted patients completed an ACP document. As such, a direction for future research could be to examine the reasons that elderly patients decline to participate in ACP, despite being provided with the resources to do so.
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Quality Improvement Program to Increase Advance Care Planning
Disclosures and Acknowledgments This work was supported by the Fan Fox and Leslie R. Samuels Foundation, New York, NY. The funder did not have any role in the intervention’s design or conduct, data collection and analysis, manuscript preparation, or decision to submit the manuscript for publication. The authors declare that they have no competing interests.
References [1]. U.S. Census Bureau. The population 65 years and older in the United States. 2018. Available from https://www. census.gov/content/dam/Census/library/publications/2018/ acs/ACS-38.pdf. Accessed June 24, 2019.
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[4]. Jimenez G, Tan WS, Virk AK, et al. Overview of systematic reviews of advance care planning: summary of evidence and global lessons. J Pain Symptom Manage 2018;56: 436e459. [5]. Brinkman-Stoppelenburg A, Rietjens JA, Van der Heide A. The effects of advance care planning on end-oflife care: a systematic review. Palliat Med 2014;28: 1000e1025. [6]. Harrison K, Adrion E, Ritchie C, Sudore R, Smith A. Low completion and disparities in advance care planning activities among older Medicare beneficiaries. JAMA Intern Med 2016;176:1872e1875. [7]. Ferlie EB, Shortell SM. Improving the quality of health care in the United Kingdom and the United States: a framework for change. Milbank Q 2001;79:281e315.
[2]. Yeo G. How will the U.S. health care system meet the challenge of the ethnogeriatric imperative? J Am Geriat Soc 2009;57:1278e1285.
[8]. U.S. Census Bureau. Demographic profile. 2017. Available from https://factfinder.census.gov/faces/ tableservices/jsf/pages/productview.xhtml?src¼CF. Accessed June 24, 2019.
[3]. Klingler C, in der Schmitten J, Marckmann G. Does facilitated advance care planning reduce the costs of care near the end of life? Systematic review and ethical considerations. Palliat Med 2015;30:423e433.
[9]. U.S. Census Bureau. American community survey 1-year estimates. Available from https://censusreporter. org/search/?q¼community%20district%2012. Accessed June 24, 2019.
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No.
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2019
Journal of Pain and Symptom Management
1
Brief Quality Improvement Report
My Life, My Way: A Quality Improvement Program to Increase Advance Care Planning in a Racially and Ethnically Diverse Patient Population Alan R. Roth, DO, FAAFP, FAAHPM, Angelo Canedo, PhD, Raisa Balabanova, BS, and Vandana Chauhan, PhD Jamaica Hospital Medical Center, Richmond Hill, New York, USA
Abstract Background. A multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP). Measures. Number of eligible patients who completed an ACP form. Intervention. Projects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community. Outcomes. The intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%. Conclusion. Multilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population. J Pain Symptom Manage 2019;-:-e-. Ó 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Intervention, quality improvement, advance care planning, end-of-life planning, cultural competency
Key message This article describes an intervention to increase ACP participation in a diverse, urban community.
Background The U.S. elderly population (65þ) is not only growing rapidly but also becoming significantly more racially and ethnically diverse.1 With increased immigration as the primary driving force, it is projected that, by 2030, one in three older adults will be from a minority group.2 As old age and minority status are associated with an increase in acute and long-term care use, the nation’s changing elderly population presents an increasing strain on the U.S. health care system.2
Address correspondence to: Alan R. Roth, DO, FAAFP, FAAHPM, Jamaica Hospital Medical Center, 8900 Van Wyck Expressway, Richmond Hill, NY 11418, USA. E-mail: [email protected] Ó 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
To address this issue, policy makers, health insurance companies, and health care organizations show increasing interest in advance care planning (ACP), which is widely regarded as having the ability to improve the appropriateness, quality, and utilization of health care among the elderly.3e5 However, owing to factors such as limited English language proficiency, low health literacy, and culturally informed beliefs and preferences about end-of-life care, minority elders are much less likely than their white counterparts to partake in ACP-related behaviors.2,6 Organization-based interventions are associated with an increase in ACP discussions, advance directive completion, and improved perceptions of ACP.3e5 However, to date, most interventions have been implemented in health care organizations that serve primarily white patients, whereas others targeted only a single
Accepted for publication: October 17, 2019.
0885-3924/$ - see front matter https://doi.org/10.1016/j.jpainsymman.2019.10.015
2
Roth et al.
ethnic group. As such, the results of past interventions may not be generalizable to diverse, urban settings, which are becoming more representative of U.S. health care organizations, and as such, offer limited guidance for policy and practice. The aim of the present intervention was to increase ACP participation in a racially and ethnically pluralistic patient population at an urban community hospital.
Intervention Development of Intervention The present intervention was guided by the Systems Approach to Health Care Delivery,7 in which the health care system is divided into four ‘‘nested’’ levels: 1) the individual patient; 2) the care team, which includes professional care providers, the patient, and family members; 3) the organization that supports the work of care teams; and 4) the environment in which organizations, care teams, and individual patients operate. This theoretical framework suggests that although it is possible to achieve a small, limited impact by focusing on only one of the four levels of the health care system, the greatest and longestlasting impact will be realized by acting on all four levels simultaneously.7 Similarly, targeting solely one level of the system may inadvertently discount the barriers that exist on the other levels, which may act as impediments to progress.7 Current literature is largely in favor of such an approach to ACP, with the most successful interventions being those that targeted more than one stakeholder in the health care system.4 As such, the current intervention targeted simultaneously the patients, the health care providers, the organization, and the community served by the organization.
Intervention Setting Jamaica Hospital Medical Center (JHMC) is an urban community teaching hospital located in Richmond Hill, New York. JHMC offers numerous inpatient and outpatient services and operates 10 ambulatory care centers that are located throughout its primary service areas. The primary service areas of the hospital and the ambulatory care centers contain Jamaica, Southwest Queens, and East New York, with an approximate population of 800,000 residents. Of those residents, 40% are black/African-American, 28% are Hispanic nonwhite, 22% are white, and 16% are Asian.8 The primary service areas make up approximately 80% of all patient encounters at JHMC. The communities that contain JHMC’s primary service areas have a population of approximately 880,000
Vol.
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No.
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2019
residents. Approximately 43% of the population was born outside of the U.S., with the greatest proportion of foreign-born residents being of Latin American origin (28%), followed by Asian/Islander (12%), European (5%), and African (3%).9 Approximately 44% of the population speaks a language other than English at home.9
Primary Outcome Measures The aim of the intervention was to increase patient participation in ACP, which is an iterative and continuous process that is composed of three core elements: 1) consideration of patient goals, preferences, and values; 2) discussion of goals and treatment options with a health care provider; and 3) the documentation of patient wishes in a legal document.4 An indicator that a patient has engaged in all three of the aforementioned elements is the completion of an ACP form, which was chosen as the primary outcome measure of this intervention. The intervention used four categorical ACP forms: 1) Living Will; 2) Health Care Proxy; 3) Medical Orders for LifeSustaining Treatment (MOLST); and 4) Do-NotResuscitate (DNR)/Do-Not-Intubate (DNI) Orders.
The Intervention Community Level. Public engagement and education can effect changes in the health care system.5 However, there is currently little public engagement in ACP. A notable exception is The Conversation Project, which is a public campaign for the promotion of end-of-life discussions between patients, family members, and health care providers. To engage and educate the community served by JHMC, the present intervention, based largely on The Conversation Project, was branded ‘‘My Life, My Way’’ and a logo was created by JHMC’s Public Affairs Department. Using this logo, two educational brochures were created. One brochure was a conversation guide for patients, whereas the other detailed the various ACP forms available to patients. In the first month of the intervention, the brochures were made available in all patient settings, including JHMC’s ambulatory care centers. In addition to the brochures, a five-minute animated video was created and uploaded to JHMC’s web site. Considering JHMC’s diverse patient population, all educational materials avoided culturally specific references and medicolegal terminology. Translation services were made available upon request.
Organization Level Two months before the start of the intervention, the Chairman of Family Medicine delivered a presentation to the organization’s leadership on the critical importance of ACP and proposed a hospital-wide quality
Vol.
-
No.
- -
2019
Quality Improvement Program to Increase Advance Care Planning
improvement program to increase participation in ACP. Two weeks after the presentation, a planning session was held among administrative and clinical leadership, during which a hospital-wide strategic plan for increasing participation in ACP was developed. September 1, 2016 was set as the official start date of program. After the planning session, an organization-wide workflow was created for engaging patients in ACP, with the primary aims of educating the patient on ACP, providing an opportunity for discussion with a health care provider, and providing the opportunity to complete an ACP form. Concurrently, ACP forms were standardized and providers were instructed to exclusively use the four advance directive forms. JHMC’s electronic health record, Epic, was updated with new builds to allow for the documentation of discussions and ACP documents, and on the start date of the intervention, made available across time and settings to all health care providers within the organization. Finally, new billing codes were created to capture revenue from insurance companies such as Medicare for ACP discussions.
Provider Level Grand rounds were held in the first month of the intervention, which included an in-depth discussion of the four types of ACP forms and an introduction to the new organization-wide workflow. Attendance was mandatory for all residents and primary care providers. After the grand rounds, three hospital-wide trainings were conducted throughout the course of the intervention. The trainings were led by a team of consultants trained by the Institutes for Healthcare Improvement. The consultant team was composed of a nurse, physician, and spiritual leader, which allowed for training to address all elements of ACP. The trainings utilized lectures, discussions, and role-play and covered the topics of chronic disease management, prognostication, life-sustaining technologies, ethics, medicolegal issues, and patient characteristics that relate to ACP. During the training session, providers were able to practice initiating and maintaining ACP discussions. Because physicians often report having insufficient time for ACP discussions, training was extended to all support staff to provide them with the ability to conduct ACP discussions. This included nurses, care managers, social workers, and patient navigators. After the first training session, certain primary care providers were appointed as the ambassadors of their respective hospital-based units or ambulatory care centers and made responsible for the education and training of support staff. After the trainings, providers received conversation guides, which included general guidelines for
3
conducting ACP discussions and specific strategies for approaching patients from certain racial, ethnic, and cultural backgrounds. Providers were instructed to ask questions about the patient’s cultural beliefs and to involve the patient as an informed participant in ACP discussions. Providers were instructed to ask patients if they preferred to involve family members in their decision making. Finally, because JHMC employs many providers from the community which it serves, many health care providers are culturally similar to their patients. In selecting providers to hold ACP discussions with patients, providers were instructed to consider their personal characteristics, including race, ethnicity, religion, and language, and how they would impact their ability to establish rapport with the patient. In most cases, providers were ‘‘matched’’ with patients they were most culturally similar to.
Patient Level A new workflow required that every patient aged 55 years and over be targeted for ACP activities in the inpatient, outpatient, and ambulatory care settings. Every patient was provided with an educational brochure on ACP and the New York State Patient Rights packet. Patients were then asked if they have any type of ACP form. Patients who indicated that they had an ACP form had the document collected, scanned, and uploaded to Epic. Patients who did not have any type of ACP form were shown a brief animated video. This was done to introduce the patient to the topic of ACP and to avoid overburdening the patient with a sensitive topic. Epic builds that were created in February 2018 show that the animated video was shown 3455 times over the course of five months in the final stages of the intervention. After being shown the video, patients were asked if they were interested in meeting with a health care provider for an ACP discussion. For those patients who agreed, a consult was scheduled with a primary care provider, social worker, or palliative care clinician. Patients who declined to meet with a health care provider had their response documented in Epic. Over the course of the intervention, approximately 21,680 patients had an ACP discussion and 3800 patients had a palliative care consult.
Outcomes Data for patient encounters were collected from Epic to include data from two years before the start of the intervention (September 1, 2014 to August 31, 2016) and two years after the start of the intervention (September 1, 2016 to August 31, 2018). Over the course of the intervention, 39,080 patients aged 55
4
Roth et al.
Table 1 Patient Characteristics Age in yrs, mean (SD) Gender (n, %) Male Race (n, %) Black/African-American/Afro-Caribbean Asian/Pacific Islander White Hispanic white Non-Hispanic white Ethnicity (n, %) Hispanic Non-Hispanic Preferred language (n, %) English Religion (n, %) Catholic Christian Hindu Baptist Muslim
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Table 2 Completion of ACP Forms Before and After Intervention 71 (11.6) 17,712 (45) 13,613 (35) 7917 (20) 8258 (21) 6577 (17) 10,314 (26) 28,766 (74) 28,029 (71) 14,264 4593 3072 2752 2439
(36) (12) (8) (7) (6)
years and over had an encounter with the hospital or its ambulatory care network. The mean age of the patients was 71 years (SD ¼ 11.6) and 17,712 (45%) identified as male. More than one-third (38%) of patients were white, 35% were black, and 20% were Asian. Over a quarter (26%) of patients identified as Hispanic. There was a total of 80 different languages spoken among the patients and 11,051 (29%) indicated a non-English language as their preferred language. While 48 different religions were represented among the patients, the largest proportion of patients identified as Catholic (36%), followed by Christian (12%), Hindu (8%), Baptist (7%), and Muslim (6%) (Table 1). In the two years before the start of the intervention, 41,846 unique patients had an encounter with JHMC. Of those patients, 308 (<1%) had a Living Will; 1077 had MOLST (3%); 54 had DNR/DNI orders (<1%); and 403 had a Health Care Proxy (<1%). In the two years after the start of the intervention, 39,080 unique patients had an encounter with JHMC. Of those patients, 22,644 (60%) had a Living Will; 3220 (8%) had MOLST; 1419 (4%) had a DNI/DNR order; and 3792 (10%) had a Health Care Proxy. Two years after the start of the intervention, the number of patients with a Living Will increased by 59%; MOLST by 5%; DNR/DNI orders by 3%; and Health Care Proxy by 9% (Table 2). Because some of the documents uploaded to Epic were completed before the intervention, some ACP forms in the EHR had an upload date that is different from the completion date. Epic reporting does not have the capabilities to distinguish between the forms that were completed before and after intervention. However, a randomly selected sample of 200 ACP forms, which were manually examined for their completion date, showed that 10 forms were
Total patients Living Will Health Care Proxy MOLST DNR/DNI orders
Preintervention 9/1/14e8/31/16
Postintervention 9/1/16e8/31/18
41,846 308 (<1%) 403 (<1%) 1077 (3%) 54 (<1%)
39,080 22,644 (60%) 3792 (10%) 3220 (8%) 1419 (4%)
ACP ¼ advance care planning; MOLST ¼ Medical Orders for Life-Sustaining Treatment; DNR ¼ Do-Not-Resuscitate; DNI ¼ Do-Not-Intubate.
completed before the start of the intervention, while the remaining 190 forms were completed during the intervention.
Lessons Learned Involving hospital leadership in the intervention was vital to establishing the program’s importance, especially during its seminal period. An organizationwide mission helped to align JHMC staff with the program’s goals. In addition, it helped to establish an evidence-based framework from which the intervention was implemented. Using this framework, the intervention targeted the four levels of the health care system, being the patients, providers, organization, and community. Intervening on the community level was perhaps the most difficult component of the intervention, owing to the extensive resources such efforts generally require. In urban communities, there is significant need for increased public engagement in ACP. Studies show that minority patients often fail to participate in ACP because they consider the topic to be uncomfortable, or simply because they are not aware of its existence.4 Providing educational materials can be an effective component of public engagement in ACP; however, all materials must be appropriate for the health literacy, language proficiency, and cultural beliefs of elderly patients. Cultural sensitivity was an important component of the intervention. This intervention targeted cultural sensitivity in the training of health care providers because practitioners generally report that cultural barriers prevent them from actively engaging patients in ACP discussions. Provider training dedicated a significant portion of time to learning about the various cultural beliefs of JHMC patients and their impact on end-of-life planning. Although the intervention resulted in an increase in ACP document completion, not all targeted patients completed an ACP document. As such, a direction for future research could be to examine the reasons that elderly patients decline to participate in ACP, despite being provided with the resources to do so.
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Quality Improvement Program to Increase Advance Care Planning
Disclosures and Acknowledgments This work was supported by the Fan Fox and Leslie R. Samuels Foundation, New York, NY. The funder did not have any role in the intervention’s design or conduct, data collection and analysis, manuscript preparation, or decision to submit the manuscript for publication. The authors declare that they have no competing interests.
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