Background: Advance care planning (ACP) is an ongoing process of communication involving patients, family members, and caregivers on one side and healthcare providers on the other to establish values, goals, and preferences for future care, along with discussions concerning end-of-life care options. Advance directives promote patient autonomy and provide written documentation of a patient’s wishes for future care.
Objectives: This quality improvement project aimed to determine if ACP discussions initiated by an advanced practice provider (APP) would enhance patient-centered end-of-life care.
Methods: This study involved retrospective data collection of 20 inpatients and 20 outpatients without a scanned advance directive in the electronic health record at the time of admission or clinic visit, as well as an ACP intervention by an APP.
Findings: APPs can initiate ACP discussions with patients with cancer, which may assist in their understanding of ACP, resulting in completion of the advance directive documents and a change in their code (resuscitation) status.
Advance care planning (ACP) is a voluntary and ongoing process of communication among patients, family members and caregivers, and healthcare professionals to understand, review, and plan for future healthcare decisions; ACP promotes shared decision making in accordance with patients’ preferences. ACP discussions also provide better outcomes for family members, including reduced decision-making burden, anxiety, and depressive symptoms (Stein et al., 2013; Sumalinog, Harrington, Dosani, & Hwang, 2017). An advance directive comprises the selection of a medical power of attorney for healthcare designation, as well as the creation of a living will that articulates a person’s wishes regarding treatment, resuscitation with CPR including mechanical ventilation, and tube feeding at the end of life (Carr & Luth, 2016).
Guidelines from the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN) recommend that ACP discussions take place within three months of a diagnosis of incurable cancer (Bestvina & Polite, 2017). The Institute of Medicine ([IOM], 2014), in its report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, identified an urgent need for improvement in health care at the end of life, as well as called for patient-centered end-of-life care that honors individual preferences and promotes quality of life. A systematic review of 113 observational studies by Brinkman-Stoppelenburg, Rietjens, and van der Heide (2014) revealed the impact of ACP on end-of-life care, as demonstrated by increased compliance with patients’ preferences and improved quality of life for patients and their families; the presence of the do-not-resuscitate (DNR) order was associated with a decreased use of CPR and increased use of hospice and palliative care services.
The University of Texas MD Anderson Cancer Center adheres to the Quality Oncology Practice Initiative standards of the American Society of Clinical Oncology, with an ACP policy requiring providers to initiate ACP discussions by the third office visit, a template for documenting ACP discussions, and online education for patients. Social workers assist patients with completing the advance directive documents. In the Department of Investigational Cancer Therapeutics (ICT), patients with solid tumors with advanced metastatic disease who have exhausted all standard-of-care treatment options are referred for enrollment in potential clinical trials. Unfortunately, according to Alma Rodriguez (personal communication, December 20, 2017), MD, vice president of medical affairs at the University of Texas MD Anderson Cancer Center, only about 20% of the 15,237 patients seen in the ICT in 2017 had completed an advance directive. In addition, many patients, when admitted for acute symptoms related to their disease progression or for treatment-related toxicities, were noted to have no completed advance directive on file and remained as full resuscitation (full code) status. Any deterioration in clinical status requiring CPR, intensive care unit transfer, intubation, or mechanical ventilation places an extra burden on the family and providers to make urgent decisions regarding the code (resuscitation) status of the patient. When patients lack ACP or have not completed an advance directive, unnecessary and unwanted interventions can occur, resulting in an increased cost of care for the patient and his or her family (Bernacki & Block, 2014; IOM, 2014). Advanced practice providers (APPs), including nurse practitioners and physician assistants, are integral members of oncology teams and have been shown to contribute greatly to cancer care (Bruinooge et al., 2018). Every inpatient and outpatient within the ICT is seen by an APP prior to being seen by the physician.
Based on observations related to clinical deterioration and the lack of advance directives and the resulting full code status among admitted patients in the ICT, a quality improvement (QI) project was initiated. The objective of this QI project was to determine if ACP discussions initiated by the APP with inpatients and outpatients with advanced cancer would enhance patient-centered end-of-life care, as reflected by an increase in the completion of advance directives and/or change in code status to DNR among these patients.
This pilot QI project focused on enhancing patient-centered end-of-life care, as evidenced by an increase in advance directive completion and/or change in code status of patients referred to the ICT. This project followed the Plan-Do-Study-Act model, which establishes a functional or causal relationship between changes in processes and expected outcomes of a QI project (Agency for Healthcare Research and Quality, 2013; Hughes, 2008). The project took place from August 2018 to May 2019.
A total of 40 patients in the ICT (20 inpatients and 20 outpatients) with advanced cancer enrolled in a clinical trial were selected for study participation based on the absence of a scanned advance directive in the individual patient’s electronic health record (EHR). Of the inpatients, 17 were women and 3 were men. Of the outpatients, 12 were women and 8 were men.
The intervention consisted of face-to-face ACP discussions and review of advance directive documents with patients by an APP, who is also one of the authors of the current study (P.G.). Prior to initiating the intervention, the APP completed an ACP certification course that included phrasing and conversational techniques similar to those described by Lum, Sudore, and Bekelman (2015) and Wasylynuk and Davison (2016).
An 18-question survey was developed to reflect patients’ feedback on the ACP discussions; this was provided to patients prior to the ACP discussion and collected after its completion. Questions were as follows: six Likert-type scale questions concerning patients’ goals, their understanding of and views regarding the importance of an advance directive, and their pre- and postintervention understanding of ACP; five demographic questions (see Table 1); six yes/no questions; and one question concerning patients’ willingness to complete an advance directive.
Following an initial introduction and physical examination, the APP proceeded with the ACP discussion with patients by reviewing their current disease status, their values, their goals of care, and the blank advance directive documents. Patients had the option to complete the advance directive documents at this visit, with assistance from the clinic/inpatient social worker, or to review the documents again and complete them at the next visit. Patients who demonstrated a clear understanding related to disease status, values, and goals of care, as reflected in their willingness to make a change in code status, were referred to the physician, who placed a DNR order in the EHR. Patients who had a DNR order and were able to be discharged from the hospital received an out-of-hospital DNR (OOHDNR) form signed by the physician and two witnesses.
Data Collection and Analysis
A total of 17 inpatient and 19 outpatient surveys were collected (see Table 2). Surveys did not include the patients’ names and were separated according to setting (inpatient versus outpatient). Study data were retrospectively collected by a senior social worker unrelated to the study via chart review; these data included ACP discussion and documentation, advance directive completion, change in code status, and the OOHDNR form.
Summary statistics were used to describe advance directive rates before and after the intervention (see Tables 3 and 4). Fisher’s exact test was used to compare frequencies pre- and postintervention. Summary statistics were also used to describe demographic characteristics and survey results by inpatient and outpatient status; these were compared using Fisher’s exact test. All statistical analysis was performed using Stata/MP, version 15.0.
The measurable outcome of this QI project was an increase in the advance directive completion rate and changes in code status via ACP discussions. After the eight-week intervention, the expected outcome was that the number of completed advance directives would improve from 20% to 40% or greater for the sample population; this goal was met. These results demonstrate that ACP discussions by the APP were associated with increased advance directive completion and change in code status of patients with advanced cancer. Among inpatients, there were significant differences noted postintervention: in ACP participation (3 preintervention versus 20 postintervention, p < 0.001), total advance directive completion (1 preintervention versus 13 postintervention, p < 0.001), change in either advance directive status or code status (4 preintervention versus 17 postintervention, p < 0.001), and medical power of attorney (1 preintervention versus 13 postintervention, p < 0.001). Differences also were observed among outpatients postintervention: in ACP participation (0 preintervention versus 20 postintervention, p < 0.001), total advance directive completion (0 preintervention versus 8 postintervention, p < 0.001), and addition of OOHDNR order (0 preintervention versus 2 postintervention, p = 0.192).
Inpatients had a significant difference in total advance directive completion from pre- to postintervention compared to outpatients. Results of the survey revealed that ACP discussions had a positive impact on all patients’ understanding of ACP and advance directive documents; 100% of inpatients (N = 17) and outpatients (N = 19) who had completed the survey responded that ACP discussions were important. Following the ACP discussion, 14 inpatients and 17 outpatients reported completely understanding ACP, whereas 3 inpatients and 2 outpatients reported somewhat understanding ACP. In addition, 11 inpatients and 7 outpatients responded that they were willing to complete the advance directive documents on the same day as the ACP discussion.
In terms of goals of care, inpatients and outpatients responded similarly. A majority of inpatients (n = 14) and all outpatients who had completed the survey (n = 19) responded that spending quality time with family and friends was extremely important. Most inpatients (n = 13) and outpatients (n = 10) reported that pain control was extremely important.
ACP can allow patients to make personalized decisions regarding their advance directives and may increase the number of patients being cared for outside of a hospital or intensive care unit (Johnson et al., 2016). The results of this QI project show that the ACP discussions initiated by the APP resulted in increased completion of advance directive documents and a change in code status of the participating inpatients.
Studies have shown that ACP discussions lead to greater advance directive completion and more DNR orders (Billings & Bernacki, 2014; Houben, Spruit, Groenen, Wouters, & Janssen, 2014; Luckett et al., 2014), as well as confirm that a lack of ACP is often associated with more aggressive treatment than the patient desires (Bernacki & Block, 2014; IOM, 2014). Improving patient education and awareness of ACP is beneficial in helping patients consider and communicate their preferences to providers who can then document their wishes as part of the medical record (Butler, Ratner, McCreedy, Shippee, & Kane, 2014).
As of January 1, 2016, Medicare began covering ACP as a separate service offered by providers using the physician fee schedule and the Current Procedural Terminology (CPT) code 99497. There is also an add-on CPT code (99498) for each additional 30 minutes of a face-to-face ACP discussion (Medicare program, 2015). ACP discussions can be billed as a separate visit, and patients can be scheduled for such discussions (Sonenberg & Sepulveda-Pacsi, 2018). Because APPs have the knowledge and skill to conduct ACP discussions, APPs can schedule patients for these independent visits (Bruinooge et al., 2018). This is an opportunity for shared decision making, enhancing patients’ understanding of their rights and allowing for a discussion of care options that reflect patients’ values and goals.
Nursing is a scientific and humanistic profession, and nurses’ specialized knowledge enhances healthcare needs and the well-being of their patients and community (Roy & Andrews, 2009). Provision 1.4 of the American Nurses Association’s (2015) Code of Ethics for Nurses With Interpretive Statements, the right to self-determination, specifies that nurses should educate patients about and advocate for patients’ legal right to self-determination; promoting ACP discussions, as well as discussing the benefits and limitations of various advance directive documents, enables patients to maintain this right.
This QI project had several limitations, including the small sample size. Patients’ willingness to engage in ACP discussions and complete advance directive documents could have influenced internal validity. A threat to validity could be patients’ previous knowledge and perceptions of ACP and advance directives (IOM, 2014).
It was possible to follow up with inpatients regarding completion of advance directive documents, but this was more difficult with outpatients, particularly because the APP worked in the inpatient setting and clinic assignments were dependent on inpatient census, presence of all three inpatient APPs, and the fact that only a physician with a large volume of scheduled patients could receive assistance from additional APPs in the clinic setting.
In addition, although a total of seven outpatients were interested in completing the advance directive documents on the same day as the ACP discussion, only four could do so because this task was secondary to the clinic social workers’ other responsibilities. Loss during follow-up occurred in the clinic setting; seven follow-up telephone calls were made, but only three outpatients completed advance directive documents after the follow-up telephone call because the APP was not able to be in the clinic on the day of patients’ follow-up visits. In the clinic setting, it may have been more feasible for the clinic team to measure ACP implementation following the intervention. Generalizability is also a concern. Study participants had metastatic cancer; results are difficult to generalize to patients without cancer.
This project highlights the importance of APP-initiated ACP discussions in enhancing patient-centered end-of-life care. APPs are increasingly being used in a variety of healthcare settings to provide care, treatment, and services to patients with cancer (Tripp, Day, Blake, & Bertram, 2017). According to IOM (2014), ACP discussions often do not occur because patients, family members, and providers all wait for another to initiate them. APPs are often the drivers of symptom management, referrals, and follow-up appointments with patients throughout their cancer journey. The introduction of ACP and subsequent discussions would be appropriate for APPs to incorporate into their daily practice of caring for patients with advanced cancer. Interventions with provider education for building ACP discussion confidence should be the next area of focus. Organizational support and strategies to incorporate an ACP model for practice has started at the institution in the current study.
The authors gratefully acknowledge Bryan Fellman, MS, for his contribution to the statistical analysis; Teresa van Oort, LCSW, for her contribution to the data collection; and Kelly Brassil, PhD, RN, AOCNS®, for her review of the proposal and her expert opinion on the survey questions.
About the Author(s)
Poonam Goswami, DNP, APRN, FNP-C, AOCNP®, is the lead inpatient advanced practice provider (APP) in the Department of Investigational Cancer Therapeutics at the University of Texas MD Anderson Cancer Center in Houston; Michael Mistric, PhD, APRN, FNP-BC, FAANP, is a clinical professor and codirector of Master of Science programs at Texas Woman’s University–Houston; and Fedricker Diane Barber, PhD, APRN, ANP-BC, AOCNP®, is the APP manager in the Department of Investigational Cancer Therapeutics at the University of Texas MD Anderson Cancer Center. The authors take full responsibility for this content. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Goswami can be reached at email@example.com, with copy to CJONEditor@ons.org. (Submitted June 2019. Accepted September 9, 2019.)
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