Goals-of-care conversations are a central component of high-quality patient-centered care. However, clinicians may not engage in such conversations until patients are critically ill.
To assess the frequency and quality of goals-of-care conversation documentation among patients who died in an intensive care unit, and then to develop and implement mechanisms to improve the quantity and quality of such conversations.
A baseline retrospective medical records review of intensive care unit deaths that occurred within 1 year was conducted to assess the barriers to high-quality goals-of-care conversations. A nurse-led inter-professional task force was formed to address possible solutions.
A new electronic health record tab, note type, and preformatted template known as a SmartPhrase for goals-of-care conversations were created. Nurses and physicians were educated and encouraged to perform and document goals-of-care conversations.
Before implementation of the initiative, the electronic health record lacked a consistent place to document goals-of-care conversations, and such conversations were not occurring until patients required intensive care. Moreover, the content of documentation of the conversations was inconsistent. Three years after implementation of the initiative, the goals-of-care conversation documentation tab was used for 75% of hospital deaths, and 67% of goals-of-care conversation notes included use of the SmartPhrase template.
Electronic health record platforms can be used to improve the frequency, consistency of documentation, and quality of goals-of-care conversations. A standardized process coupled with effective work tools can foster a culture of advance care planning.
Goals-of-care conversations are a central component of sound advance care planning. However, clinicians may not engage patients in conversations about their preferred proxy for treatments, health care goals, end-of-life decisions, minimally acceptable quality of life, or values until very late in the course of illness, if at all.1-3 Each year, approximately 500 000 Americans die in an intensive care unit (ICU), making up nearly 20% of all deaths in the United States.4 This reality requires clinicians working in ICUs to have goals-of-care conversations regularly.
Goals-of-care conversations are a fluid process in which clinicians, the patient, and the patient’s family discuss the patient’s wishes and values and then work to ensure that the care received is in alignment with them. These wishes and values are the foundation of high-quality, patient-centered decision-making.5 Goals-of-care conversations fall under the umbrella of advance care planning, which is an ongoing process in which the patient, the family, and health care providers discuss the care the patient would want to receive if they were no longer able to communicate their wishes, based on their personal values, beliefs, preferences, and goals.6 Examples of specific patient goals might be continuing to engage in hobbies such as gardening or being able to drive to see grandchildren an hour away. These goals may change as the patient nears the end of life and may be replaced with new goals such as living long enough to attend a family wedding, achieving a sense of completion, or having a pain-free death.7,8
According to the National Academy of Medicine (formerly the Institute of Medicine) publication Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, goals-of-care conversations often do not occur. The report suggests that this absence is due to providers’, patients’, and families’ assumptions that the onus to initiate the conversation is on the other party.9 Patients expect health care practitioners to provide counseling on advance care planning. However, for practitioners with many competing priorities, there may be an inadequate financial incentive to initiate a goals-of-care conversation given the time such a discussion would take, thus decreasing the likelihood that the conversation will occur. Other reasons for clinicians’ avoidance of these conversations may include lack of training in the area, an aversion to uncomfortable feelings associated with illness or death, and not wanting to appear “negative” or as having failed or given up on their patient.9
Often the task of holding these difficult yet vital conversations is left to the newest provider in a person’s long trajectory of care. The best time to talk to a patient about their goals of care is not when they are actively decompensating during a rapid response event, hypoxic and too confused to think or communicate clearly. If these conversations are taking place in the ICU, they can hardly qualify as advance care planning and would be more accurately described as reactions to a crisis. Although 71% of Americans state that they prefer to die at home,10 mortality statistics indicating that only 29.5% of deaths occur in the home11 show that clinicians are falling short of helping people achieve this goal. According to a Regence Foundation poll, 71% of Americans believe that it is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life, than to extend it with every possible medical intervention.12 Improved documentation and quality of goals-of-care conversations may be a vital step toward helping patients receive care that is centered around their wishes and goals.
Goals-of-care conversations are a fluid process in which clinicians, the patient, and the patient’s family discuss the patient’s wishes and values.
There are also economic benefits to having goals-of-care conversations. According to the Centers for Medicare and Medicaid Services, US health care spending grew 5.3% in 2014, reaching $3 trillion.13 More than 25% of health care costs are incurred in the last year of life,14 and a 2014 study showed that medical bills are the largest cause of consumer bankruptcy in America.15 With the cost of care in the United States being the highest in the world, the National Academy of Medicine stated in their report that there are opportunities for savings by avoiding acute care services that patients and families do not want and that are unlikely to benefit them.9 Curtis et al4 argued that 4 decades of research suggest that many people who are dying receive care they would not choose. By having frequent conversations, health care providers can realign goals and avoid aggressive therapies or heroic measures that would not be used if patients were candidly informed of the nonbeneficial nature of treatment.
The purpose of this quality improvement project was 2-fold. The first goal was to characterize the existing frequency and quality of goals-of-care conversation documentation in a large academic health system. The second goal was to increase the frequency and quality of such conversations, specifically by creating a home in the electronic health record (EHR) to house all advance care planning–related documentation and a framework to conduct and document high-quality conversations in the inpatient setting.
Extensive research on advance care planning has revealed many benefits, including better patient outcomes,5 increased quality of life, reduced use of life-sustaining treatments, reduced costs at the end of life,16-19 and reduced ICU admissions.20 In addition, reported benefits to the family and surrogate decision maker (also known as the medical decision maker, health care agent, or durable power of attorney for health care) include experiencing less guilt, stress, and depression associated with the ICU stay and greater satisfaction in making decisions.21 However, research describing and assessing the incorporation of advance care planning into the EHR is scarce. One study by Temel et al22 that used EHR technology to promote advance care planning demonstrated that a best practice alert in the EHR with electronic prompts led to greater code status documentation.
After the person-focused part of the goals-of-care equation has been explored and established, the medical team can build on the foundation laid to address current, relevant medical care options, such as code status or potentially life-sustaining therapy preferences. Mistakenly, clinicians often focus on the medical side of the equation, ignoring the fact that the basis of goals-of-care conversations should be where and how patients want to live their lives. Only after this basis has been established should medical options that align with the patient’s goals be presented. If treatment appears uncoordinated between different teams, a more in-depth goals-of-care conversation within a family meeting can be held to ensure that the care is in line with the patient’s wishes. Understanding the patient’s care goals in the context of a serious illness allows clinicians to align the care provided with what is most important to the patient7 and ensures that shared decision-making is occurring throughout the health-illness continuum (Figure 1).
Goals-of-care conversations may benefit clinicians as well. Knowing that the often painful, bothersome interventions being provided are truly what the patient wants may help ease feelings of distress and provide some solace for nurses. A major cause of moral distress for nurses is providing nonbeneficial treatment.23 Because goals-of-care conversations should occur frequently and most people state that they prefer comfort care over aggressive life-sustaining measures,10 another potential benefit for clinicians may be decreased feelings of moral distress through a decrease in the provision of nonbeneficial treatment.
As the largest health care workforce in the United States, nurses have a distinct opportunity to affect the culture of advance care planning. According to the American Nurses Association, nurses must advocate for and play an active role in such discussions, with a duty to “encourage patient and family participation in health care decision-making, including the use of advance directives in which both patient preferences and surrogates are identified.”24 The American Nurses Association also challenges us to maximize our role near the end of life, stating that nurses will be comfortable having discussions about death, and will collaborate with the care teams to ensure that patients and families have current and accurate information about the possibility or probability of a patient’s impending death.24
This article’s description of our goals-of-care initiative offers an example of how a major health care system can apply the National Academy of Medicine’s recommendations in the clinical setting (Table 1).
The catalyst for our quality improvement initiative was frustration voiced by clinical nurses in a medical-surgical ICU with the status quo regarding goals-of-care conversations in their work setting. There was ample evidence to support the need for high-quality goals-of-care conversations, yet such discussions were not being held in their workplace. A small group of nurses reached out to their nursing leadership, clinical nurse specialist, and palliative care and critical care providers to collaborate on ways to improve patient care. Such collaboration ultimately led to the creation of an advance care planning task force.
Institutional review board approval was waived for this evidence-based practice change project (#151387).25 A quality audit of closed medical records contained in the EHR of ICU deaths over 1 year was conducted to assess the circumstances and barriers surrounding goals-of-care conversations in a large academic tertiary health care system. These data were used to define the problem and create an action plan. The percentage of cases with documented goals-of-care conversations, the timeliness of such conversations, and the content of the goals-of-care conversation note were evaluated before and after implementation of the new procedures.
Baseline Audit Results
The baseline retrospective record review of all ICU deaths across the system in 1 year (n = 356) revealed that 23% (n = 81) occurred in a single medical-surgical ICU with a high oncology patient population. Although 88% of the patients were full code on admission to the ICU, at the time of death, 68% had been changed to comfort care and another 20% to do-not-attempt resuscitation–full care. When the results were reviewed with clinical nurses, they expressed the belief that the findings reflected a lack of high-quality goals-of-care conversations occurring “upstream” and a desire to work toward preventing these types of ICU admissions. This perception was supported by the fact that 44% of the deaths occurred within 48 hours of ICU admission and that code status was changed by critical care providers in 81% of cases. Minimal correlation was found between the number of goals-of-care conversations (primarily represented by code status conversations) and overall hospital length of stay (LOS) (ρ = 0.278; P = .01).
As the largest health care workforce in the United States, nurses have a distinct opportunity to affect the culture of advance care planning.
Versions of goals-of-care conversations were found in various provider notes throughout the EHR, including history and physical, progress notes, consultations, and interdisciplinary notes, which made it difficult to identify the important information. Many notes included a future-tense commitment to revisit goals of care or prognosis but without subsequent documentation of such a conversation actually taking place. There was a lack of consistency in the content of documentation, such as who was present for the goals-of-care conversation, what was discussed, and whether the conversation should prompt a change in the medical plan of care. The notes also lacked documentation of who the patient’s surrogate decision maker was, their contact information, and whether that designated person was aware of the patient’s wishes. Prognostic and diagnostic information was noticeably absent from documented goals-of-care conversations. Some notes stated, “prognosis poor/grim,” but it was seldom indicated whether this was communicated to the patient or surrogate decision maker. In addition, the focus of the conversations was clinical, with no information addressing the patient’s values, beliefs, or wishes or indicating respect for their individuality or uniqueness.
The baseline audit revealed that the opportunity for initiating, executing, and documenting goals-of-care conversations existed during the hospital stay but was being missed. The audit highlighted 2 key issues related to accessing and documenting goals-of-care conversations: (1) the EHR lacked a consistent place for goals-of-care conversation documentation and (2) documented conversations lacked consistency and key elements necessary for high-quality discussions.
In addition to reviewing published literature on advance care planning, we considered best practices presented in various palliative care websites, such as the Improving Palliative Care in the ICU project site and the Making Your Wishes Known Online Decision Aid, for possible adoption or adaptation.7,8,26 The task force integrated many of the National Academy of Medicine guidelines and focused on creating 3 tools: (1) a goals-of-care conversations– designated note type and tab in the EHR that was available to all users, (2) a goals-of-care conversation documentation SmartPhrase (a tool in the Epic EMR system) that functions as an insertable automated template required for a high-quality goals-of-care conversation, and (3) a trigger list for advocating goals-of-care conversation frequency. The aim of the designated note type and tab was to house and track all goals-of-care conversations consistently in the same readily available location in the EHR.
The initial template for the inpatient SmartPhrase was based on key information frequently missing from goals-of-care conversations in the initial record review. In this manner, the advance care planning task force was able to deliberately include those missing elements while keeping the tool as succinct as possible. In discussions, it was found that inpatient and outpatient goals-of-care conversations required different foci. A separate goals-of-care conversation note type and separate SmartPhrase, known as the Goals-of-Care SmartPhrase, was drafted for each setting (inpatient and outpatient) to better cater to the priorities of each setting. However, in both cases the language used in the template was intentionally crafted to ensure that the conversation focused on the person (personhood, individuality, wishes, and values) before introducing any medical discussion.27
The inpatient SmartPhrase text begins with identification of a surrogate decision maker and their contact information. Then it inquires if the patient has made their health care decision wishes clear to their named decision maker. The patient’s priorities and personal outlook on their quality of life should be emphasized. The topics discussed are documented in detail, assessing the patient’s priorities regarding quality of life with an emphasis on addressing “the person before the patient.” The SmartPhrase then guides the provider to a discussion of anticipated outcomes, prompting the provider to communicate the prognosis to the patient. Finally, the SmartPhrase reminds the provider to address the patient’s code status and change it if appropriate to reflect the outcome of the discussion (Table 2).
The advance care planning task force included the hospital’s EHR informatics analysts to develop these items within the EHR platform. The EHR informatics analysts also added links to goals-of-care notes in the code history report, which was available with a single click from the code status field in the patient header. This report is a snapshot view of code status history, advance directive and medical order for life-sustaining treatment documents, and the last 3 documentations of this new note type. The evidence-based SmartPhrase provided a framework to promote the inclusion of essential advance care planning information recommended for consistency and quality of goals-of-care conversations.
The SmartPhrase template was initially piloted by several of the task force members for 3 months, and then revised over several months in accordance with thoughtful interdisciplinary feedback. Concurrently, a literature search was performed to establish evidence-based trigger lists to guide the timing of goals-of-care conversations. A trigger is an objective or disease-specific criterion developed to cue an action or a response. Numerous palliative care consultation and advance care planning trigger lists were found.28-30
The trigger list developed had a broad criterion to help remind nurses and providers when a goals-of-care conversation was needed. Notably, any inpatient transfer to a higher level of care as well as diagnosis or progression of cancer was made a trigger for an inpatient goals-of-care conversation. In an effort to ingrain frequent goals-of-care conversations into the culture and empower nurses to advocate for these conversations, a standard of conducting goals-of-care conversations at least once a week was added to the trigger list (Table 3). An expectation was set that a goals-of-care conversation would occur once during the first week of admission and weekly thereafter. This once-a-week goal would also require hospitalists who had their patient load rotated weekly to have a goals-of-care conversation and thus establish rapport with their patients.
The baseline audit revealed that the opportunity for initiating, executing, and documenting goals-of-care conversations existed but was being missed.
Because the SmartPhrase addresses prognosis, its use was limited to advanced practice practitioners and physicians. However, as nurses spend the most time with patients and should engage in these important conversations, the goals-of-care note type empowers nurses to enter free text about conversations they had or relevant statements the patient may have made. Recently, a nursing-focused SmartPhrase called the “wishes” SmartPhrase was developed by another bedside nurse to support nurses in creating a blueprint for nurse-driven goals-of-care conversations. This SmartPhrase draws on the unique personal relationship between patient and nurse by prompting the user to record information on what gives a patient’s life meaning and his or her hopes, fears, specific goals, stressors, and barriers, along with identification of a surrogate decision maker.
As nurses spend the most time with patients, the goals-of-care note type empowers nurses to enter free text about conversations they had.
Task force members presented educational offerings at meetings of various multidisciplinary committees as well as at unit-based, leadership, and management meetings. Physicians also presented education at interspecialty grand-round meetings. Clinician education was concurrently rolled out in the form of a voluntary online module through the institution’s learning management system. Managers and other stakeholders also received education in the form of emails. Data on the use of the goals-of-care conversation tools were collected monthly for 12 months after rollout on all patients to determine how it was being used. Because of the complexity and the time-consuming nature of the original audit, postimplementation data were limited to 2 surrogate measures of success: (1) percentage of deaths with documented goals-of-care conversations and (2) percentage of goals-of-care conversation notes using the SmartPhrase.
At 3 years after implementation of the goals-of-care tab in the EHR, the percentage of hospital deaths with a documented goals-of-care conversation note had increased from 19% to 75%. Of these documented goals-of-care conversation notes, the use of the SmartPhrase template increased from 41% immediately after the creation of the SmartPhrase to 67% at 3 years after implementation (Figure 2). The SmartPhrase encourages inclusion of key components of high-quality goals-of-care conversations and is thus a proxy for the quality of documentation. These data do not represent the goals-of-care discussions documented outside of the goals-of-care tab (eg, progress notes, history and physical); thus, we presume that more conversations are happening than what these data capture.
The advent of this tool has allowed additional goals-of-care metrics to be used as metrics for advance care planning. In order to evaluate timeliness, a report was generated assessing the mean number of days from first documented goals-of-care note to death versus the mean LOS for patients who died. If goals-of-care conversations begin earlier in the patient’s stay, the number of days from the first goals-of-care conversation to death should increase over time. However, the fact that the mean LOS for the patients who died affects this number greatly is also taken into account (Figure 3).
As recommended by the National Academy of Medicine, interdisciplinary involvement was critical to this quality improvement initiative, as the variety of perspectives achieved would not have been possible with a single specialty or scope of practice. Integration of a wide range of specialties and disciplines including hospitalists, oncologists, palliative care providers, bedside nurses, nurse managers, social workers, and the EHR team allowed the task force to develop and hone a template to promote high-quality goals-of-care conversations. In addition, embedding an Epic tracking feature known as a SmartData element in the goals-of-care SmartPhrase enabled generation of reports on use of and compliance with the SmartPhrase and provided a means to track progress in use. Moreover, the goals-of-care initiative has affected the institution’s culture of advance care planning, with goals of care having become a common term used in everyday practice.
Through its use of the EHR platform, the goals-of-care initiative aligns with the National Academy of Medicine’s recommendations. Providers can easily discover notes on goals-of-care conversations made by other providers, as well as those that took place in outpatient settings or before admission. Consistency was improved by standardizing the location of this information. All goals-of-care conversation documentation is now located in one place, which enhances retrievability for clinical practice and report capabilities for auditing and performance improvement initiatives. Having a unique advance care planning tab (a specific notes section) and note type ensures that patients’ documented preferences for care are easily and quickly discoverable in the EHR without the need to browse every note type. Quick access to this information is vital in rapidly deteriorating or emergency situations.
Although the trigger list was advocated, the culture-based nature of this initiative made it challenging to verify its use according to plan. With so many competing priorities in health care, it is apparent why the National Academy of Medicine recommends legislation for policies and incentives to ensure that its recommendations are acted on. This reality was reflected by the practitioners’ slow adoption of the goals-of-care conversation SmartPhrase in this initiative. To further provide incentives for adoption of the SmartPhrase and incorporation of frequent goals-of-care conversations into practice, recent billing codes for advance care planning conversations (Current Procedural Terminology codes 99497 and 99498) were later incorporated into goals-of-care education.
To effectively promote goals-of-care conversations with their seriously ill patients, critical care nurses must receive palliative care training, practice end-of-life communication skills, and learn how to advocate for such conversations.
Education remains the largest challenge faced by this project. Changing clinicians’ habits and assumptions regarding advance care planning and the need for it while establishing its priority has been difficult. Other barriers have included providers’ tendency to document conversations in progress notes, the institution’s size, the constant influx of new providers at an academic institution, and a lack of a central education process for providers.
Because ICUs often bear the burden of an absence of advance care planning, acute and critical care nurses reached out to collaborate with nurses in other settings and specialties as well as other disciplines to correct these systemic issues further “upstream.” To effectively promote goals-of-care conversations with their seriously ill patients, acute and critical care nurses must receive palliative care training and education, practice end-of-life communication skills,31 and learn how to assertively advocate for such conversations. Nurses’ ability to fully understand their patients’ wishes regarding cardiopulmonary resuscitation is just as important as their ability to resuscitate.
This project empowered nurses to advocate for goals-of-care conversations to be held and to be documented at least once per week, as established by the trigger list. The development of the goals-of-care note and the SmartPhrase template establishes a measurable standard that can now be tracked as an advance care planning metric. With this new way of tracking advance care planning data by the team providing the service or individual provider, institutions can generate regular reports on patterns of use in order to identify the appropriate focus of future educational initiatives.
After learning that they can have goals-of-care conversations and being educated on the necessary skills, nurses throughout our system have been responsive to engaging in and documenting such conversations. The goals-of-care initiative has improved the institution’s awareness of advance care planning and the advance care planning culture within the health system. In addition, the goals-of-care initiative has improved the quantity and quality of advance care planning and goals-of-care conversations in the organization.
The authors thank Irene Nakanishi, MSN, RN, CCRN, Eema Hemmen, MPH, Director of Quality Analytics, and Debra Paulson, MS, Clinical Informatics Specialist. The authors also thank Christel Haakmeester, BSN, RN, CCRN, for her work creating the .wishes SmartPhrase. The authors also thank Julia Cain, ANP, and Kathryn Thornberry, LCSW, for their mentorship in developing the concepts behind Figure 1.
To purchase electronic or print reprints, contact the American Association of Critical-Care Nurses, 27071 Aliso Creek Rd, Aliso Viejo, CA 92656. Phone, (800) 899-1712 or (949) 362-2050 (ext 532); fax, (949) 362-2049; email, email@example.com.
To learn more about palliative care training, read “Palliative Care Professional Development for Critical Care Nurses: A Multicenter Program” by Anderson et al in the American Journal of Critical Care, 2017;26(5):361-371. Available at www.ajcconline.org.