JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 11, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.0085
Outpatient Advance Care Planning for Patients with Metastatic Cancer: A Pilot Quality Improvement Initiative Jennifer Obel, MD, Bruce Brockstein, MD, Michael Marschke, MD, Ari Robicsek, MD, Chad Konchak, MBA, Meredith Sefa, MMI, Nicole Ziomek, BS, Tiffany Benfield, MS, Carrie Peterson, BS, Cory Gustafson, MS, Joann Eriksson, APN, OCN, Abigail Harper, PharmD, Cory Tabachow, MHA, Michael Raymond, MD, and Thomas Hensing, MD
Abstract
Background: Despite American Society of Clinical Oncology (ASCO) and National Comprehensive Cancer Network (NCCN) guidelines recommending that oncologists discuss advance care planning (ACP) with patients with stage IV cancer early in treatment, in standard practice ACP remains a late step of a terminal illness. ACP preserves comfort and dignity at the end of life, ensuring patients receive the care that they desire. Methods and Materials: A feasibility study in patients with stage IV cancer was developed to test whether incorporating ACP immediately after a stage IV cancer diagnosis is feasible. Inclusion criteria were consecutive new gastrointestinal and thoracic oncology patients treated by one of two oncologists. The project included creation of new workflow; development of an ACP patient education guidebook; training seminars for oncology staff; and enhancements to the electronic health record (EHR) to improve ACP documentation. Results: The oncologists recorded 33 of 48 (69%) advance directive notes (ADNs) and 22 of 48 (46%) code status orders (CSOs) in the EHR of patients newly diagnosed with stage IV cancer by following ACP protocol during the 6-month trial period. Twenty-one of 33 ADNs were entered within 7 days of first consultation. The median time to ADN placement was 1 day after consultation. Twenty-two of 33 patients with ADNs had CSOs placed, of which 16 were do-not-resuscitate (DNR) and 6 were full code. One year prior to the feasibility study, only 1 of 75 deceased patients of the two oncologists had outpatient ADNs and CSOs. Conclusions: Outpatient ACP is feasible early in the care of patients with stage IV cancer through systematic improvement in workflow and motivated providers. Education and infrastructure were pivotal to routine development of advance care plans.
Introduction
T
he Institute of Medicine (IOM) 2013 report entitled, ‘‘Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis,’’ estimates cancer care will cost $173 billion by 2020.1 The IOM report recommends that in the setting of advanced cancer, the medical team should provide patients with end-of-life (EOL) care consistent with patients’ values and preferences, and revisit and implement their advance care plans throughout the cancer care continuum. Despite national guidelines from the IOM, the American Society of Clinical Oncology (ASCO), and the National Comprehensive Cancer Network (NCCN) that recommend oncologists discuss advance care planning (ACP) and goals
of care with patients with incurable cancer early in the disease process,2,3 in standard practice, ACP remains a late step. In general, oncologists tend to discuss ACP when patients have no further standard chemotherapy options available.4 Even to an oncologist, death can be a challenging topic to broach with a patient. Physicians may be uncomfortable discussing EOL because their medical training focuses primarily on curing or treating illness. EOL discussions may symbolize failure to the physician and a loss of hope for the patient. Additionally, these long and intensive discussions are time consuming and emotionally trying for the patient and the physician, and there is no financial incentive for the physician to encourage ACP discussions in the current health care system.
NorthShore University HealthSystem, Evanston, Illinois. Accepted September 22, 2014.
1231
1232
In general, treatment of patients with incurable cancer is becoming increasingly aggressive, exemplified by the greater use of multiple chemotherapy regimens and radiation treatments and increased rates of hospital admission, emergency department visits, and intensive care utilization during the final month of life.5,6 Despite chemotherapy advances, the prognosis of many incurable solid tumors remains poor, with median survivals of less than 1 year, in particular for metastatic lung cancer and noncolorectal gastrointestinal cancers.7–9 While treatment may extend survival and improve symptoms temporarily, patients and their families experience significant physical and psychological suffering during the illness.10 The majority of patients with incurable cancer, however, report wanting timely and realistic prognostic information from their physicians to prepare themselves and their families.11–13 When patients understand their prognoses accurately, the majority of patients describe a wish to die comfortably at home, not in a hospital setting.14 Furthermore, patients with advanced cancer who understand they are terminally ill are more likely to receive earlier symptom-directed care and referral to hospice, while those who overestimate their prognosis are more likely to choose an aggressive course of therapy such as additional chemotherapy.15 Research has demonstrated that when EOL discussions occur on a timely basis, the patient dies in his or her chosen place of death, which results in decreased suffering across the family system.16 Family members of patients who receive hospice services report improved psychological and physical health, less complicated bereavement, and higher satisfaction with care, compared with those family members who care for loved ones who do not receive hospice.17 Undesired treatment and resuscitation may occur if the patient does not understand the trajectory of the illness and the physician does not review goals of care with the patient. Studies have shown that 69% of patients with metastatic lung cancer and 81% of patients with metastatic colon cancer receiving palliative chemotherapy failed to understand that treatment was not curative.18 Additionally, only half of patients with a new diagnosis of lung cancer accurately recalled information about the goal of treatment shortly after the oncology visit.19 Our EOL quality improvement team conducted an ACP pilot in patients newly diagnosed with stage IV cancer to assess the feasibility of finalizing an advance care plan shortly after establishing the cancer diagnosis. Goals of the quality improvement project include: (1) create new processes and workflow to ensure timely creation of advance care plans; (2) educate outpatient oncology staff on newly designed processes and methods to develop an advance care plan based on patient values and goals instead of centering ACP discussions on obtaining a code status order; (3) change the EOL conversation to include templated, open-ended questions that define the patient’s understanding of his or her illness and incorporate personal values, goals, and desire for extraordinary measures into the advance care plan. Methods
OBEL ET AL.
Shore-employed oncologists treat patients at three outpatient oncology centers (Kellogg Cancer Center). Outpatient and inpatient providers utilize a common electronic health record (EHR) called EPIC (Epic Systems Corporation, Verona, WI). An EOL quality database of nine metrics was created to measure quality of EOL care for patients with stage IV cancer.20 By analyzing the EOL database, it was found that most patients with metastatic cancer at NorthShore did not have outpatient ACP documentation in an advance directive note (ADN; a note type filed under this title) that is easily searchable in the EHR. The majority of EOL discussions were documented during hospitalization during the final stages of illness. For instance, from November 2011 to September 2012, only 2% of Kellogg Cancer Center’s deceased cancer patients had outpatient ADNs and only 29% of deceased cancer patients had ADNs placed during hospitalization. Likewise, only 4% of deceased cancer patients had outpatient code status orders (CSOs) compared to 56% of deceased patients whose CSOs were entered during inpatient stays. Prior to the quality improvement project, oncologists often documented goals of care in the progress note, as opposed to the ADN, when the physicians believed that the patient was near death. Additionally, oncologists were not frequently obtaining outpatient CSOs. A uniform manner regarding how and when to document goals of care and code status did not exist at Kellogg Cancer Center prior to this feasibility study. Our ACP Task Force, which included oncologists representing the Oncology Quality Improvement subcommittee, cancer center administrators, hospice and palliative care physicians, and internal medicine physicians, devised systematic procedures to introduce and facilitate ACP at diagnosis for incurable cancer patients (Fig. 1). During study design and implementation, the project was presented at semimonthly Division of Hematology and Oncology meetings, quarterly Cancer Committee meetings, and quarterly Oncology Quality Improvement Subcommittee meetings. The intervention qualified as a quality improvement project according to the NorthShore Research Institute Institutional Review Board (IRB) and received IRB exempt status. Patients
The inclusion criteria for this pilot study were consecutive new gastrointestinal and thoracic oncology patients with stage IV cancer seeing one of two oncologists from March 2013 to August 2013. The data were analyzed in two, 3-month time periods based on the assumption that the rate of early ACP would increase over time as provider experience increased. All patients must have been seen at least twice as outpatients to be included in the cohort, although the ACP process often began at the first visit. We compared this cohort to the same two oncologists’ historical controls who died 1 year prior to the feasibility study. Deceased patients were identified by joining Social Security death index to our organization’s enterprise data warehouse. Additionally, we also compared the intervention cohort to controls seeing two nonparticipating oncologists as new patients during the feasibility time frame.
Background
NorthShore University HealthSystem is an integrated, community-based health system comprising outpatient and subspecialty physicians who admit to four hospitals. North-
Intervention
During the first visit to the oncologist, an oncology nurse introduced the concept of ACP to patients by asking four
OUTPATIENT ACP FOR PATIENTS WITH METASTATIC CANCER
FIG. 1.
1233
Advance Care Planning Kellogg Cancer Center workflow for new stage IV cancer patients.
standard questions (Fig. 2). The oncology nurse asked patients who the physician should contact for emergency decisions if the patient is not capable of decision making, whether this person knows the patient’s wishes, and whether this was written down. Patients were asked if they have an advance directive, and if they would like more information about ACP. The nurse presented the acquired ACP information to the oncologist as part of nursing intake. The oncologist conducted a standard consultation and reviewed the ACP information with the patient. The oncologist was encouraged to enter an ADN and CSO at the first appointment if the patient had clearly defined goals and/or had completed a prior advance directive. If additional education was necessary, the oncologist indicated that the nurse would meet with the patient to provide ACP and chemotherapy education. The
patient received an ACP guidebook, which is an educational workbook on ACP (Fig. 3). At the next appointment, the nurse utilized the ACP guidebook to elicit patient goals, beliefs, and EOL views in order to complete an ADN in the EHR. A social worker was consulted for patients and family members struggling with ACP. The oncologist reviewed goals of care at an additional follow-up appointment by reviewing the patient’s understanding of the illness and his or her belief system. The oncologist filed another ADN in the EHR and a CSO was finalized as an order. At the point of recognized cancer progression, the algorithm directed the care team to revisit the patient’s prior goals of care, discuss therapy options and extraordinary measures in the context of the patient’s current wishes, and review hospice as an alternative treatment choice. The oncologist
FIG. 2. EPIC Advance Care Planning Navigator, which allows review of prior code status orders and advance directives notes, scripted intake questions, placement of advance directive notes, and code status orders. Fictionalized patient. ª 2014 Epic Systems Corporation.
1234
OBEL ET AL.
FIG. 3. Advance Care Planning Guidebook section to assess patient values on a scale Not Important (1,2), Somewhat Important (4,5), Very Important (6,7). would enter a new ADN and CSO into the EHR if there was a change in goals of care. The ADNs placed at cancer progression were not measured as part of the feasibility study. While these steps were designed as an ideal workflow, ACP discussions may have taken place at different time points based on patient and provider schedules and the patient’s willingness to discuss these concepts. Tools
An educational guidebook for patients was created, which introduced the concepts of medical power of attorney (POA) and living wills. It incorporated tools, work sheets, and medical scenarios to elicit patients’ goals and wishes (Fig. 3). The guidebook, created by the ACP Task Force, encouraged the patient to communicate these views to loved ones, their medical POA, and health care team. An electronic, EPIC-based ACP navigator was designed for the EHR that allowed clinicians to efficiently review pertinent ACP information and document additional ACP information pertaining to the patient that flows from one patient encounter to another in the EHR (Fig. 2, which rep-
resents a fictionalized patient). At the start of the project, the EHR did not permit review of prior CSOs; ADNs could be viewed only be filtering the note type category. The ACP navigator includes a section entitled ACP Report where prior CSOs and ADNs from other encounters can be reviewed. The ACP Report also exists as a hyperlink in the patient header for both inpatients and outpatients. In the ACP navigator, nursing staff record the patient’s answers to templated questions and the medical POA with contact phone number. Physicians can document ADNs that automatically file under this note type and place code status orders. Hyperlinks to the ACP guidebook and pertinent forms, including the Illinois POA form and DNR documents, exist in the navigator as well. Because a patient’s code status decision can change over time, the EHR requires that a CSO is recorded at each inpatient encounter. A Best Practice Advisory (BPA) was created to increase code status continuity among admissions and episodes of care. This BPA is an alert that activates when a physician orders full code for a patient who had a prior DNR or limited code status order. It requires the ordering provider to specify an override reason for the change to full code.
OUTPATIENT ACP FOR PATIENTS WITH METASTATIC CANCER Education
An educational slide set was developed that focused on the importance of ACP, the role of each provider, and the necessary tools and methods to incorporate ACP into daily practice. Four oncology nurses, two nurse practitioners, a nurse navigator, three social workers, and oncology administrators attended a 90-minute face-to-face education session while physicians attend a 40-minute session, both conducted by the Director of Hospice and Palliative Medicine. At a follow-up meeting 1 month later, providers were interviewed regarding their experiences. Results
The oncologists recorded 33 of 48 (69%) ADNs and 22 of 48 (46%) CSOs in the EHR of new stage IV patients by following the ACP protocol during the 6-month trial period. Oncologist 1 recorded an ADN in the EHR of 10 of 21 new stage IV patients and oncologist 2 recorded an ADN in the EHR of 23 of 27 new stage IV patients. More than half of ADNs—21 of 33 patients—were entered into the EHR within 7 days of first consultation. ADNs were completed a median of 1 day after consultation in both oncologists’ cohort of new patients, but a mean of 15.3 and 7 days after first consultation in oncologist 1 and oncologist 2’s practices, respectively. CSOs were entered less frequently than ADNs in the oncologists’ cohort of patients; 11 of 33 patients with ADNs did not have CSOs placed. Many patients had CSOs entered 1–3 days later than the ADN. However, 3 patients had CSOs placed more than 7 days after the ADN (day 25, 28, 50) possibly reflecting the greater difficulty in translating patient goals into a CSO, or subsequent conversations that transpired. Of the 22 CSOs, 16 were DNR and 6 were full code, although 2 full CSOs were changed to DNR at future health care interactions. Of the 16 DNR orders, 4 patients had prior full-code status, 1 had a prior DNR, and 11 had no prior CSOs in the EHR from prior inpatient documentation. Of the patients with outpatient DNR orders placed in the oncology encounter, a total of 8 patients had been hospitalized subsequent to their oncology consultation, all of whom had inpatient DNR orders entered at hospitalization. There was no change in the rate of early ACP over the two time periods in both practices. To compare to historical controls, the charts of the two oncologists’ deceased patients 1 year prior to the feasibility study were evaluated. Only 1 of 75 deceased patients had outpatient ADNs and CSOs entered into the EHR. Notably, 30 of 75 and 49 of 75 deceased patients had ADNs and CSOs respectively recorded in an inpatient encounter. Two oncologists who had similar practices and who did not participate in the feasibility study recorded 1 of 52 ADNs and 1 of 52 CSOs in the EHR of newly diagnosed stage IV patients over the same time period as the feasibility study. Discussion
This feasibility study demonstrates that education and improvement in process and infrastructure can significantly increase development of outpatient advance care plans in patients with incurable cancer shortly after a cancer diagnosis is made. While ACP is time consuming, we found that pro-
1235
fessionals who are comfortable conducting goals-of-care conversations and who have additional tools that facilitate this conversation can develop outpatient advance care plans early in cancer care. By encouraging aspects of goal assessment by nonphysician staff, the process became more manageable for physicians. The workflow was devised to accomplish two goals: to create a forum for education about goals of care separate from the first consultation and to allow partnering with nurses for goal assessment. Patients may be less threatened by a nurse-led discussion of goals of care, because nurses do not discuss prognosis or make definitive treatment decisions. This process also empowers the oncology nurse to act as a patient advocate, voicing the patient’s concerns and values to the team. However, it was the oncologist’s responsibility to finalize an advance care plan. Other cancer centers have implemented different models to enhance advance care planning documentation. In one model, social workers obtained advance directives at the palliative care visit; 18% of patients had advance directives and 33% of patients had code status orders placed in the EHR after palliative care visits.22 Another cancer center assessed the effect of electronic prompts to encourage oncology providers to document code status in the outpatient EHR. The electronic prompts increased the rate of code status documentation from 14% to 33%.23 At Kellogg Cancer Center, the process of obtaining advance directives, code status orders, and medical POA assignment became part of regular cancer care, which may account for our high rate of ACP documentation. Frequent discussion of the project raised general awareness within the Hematology and Oncology Division regarding ACP; there was a trend toward increased ADNs in quarterly reports of the EOL database. Despite the fact that the two oncologists who participated in the pilot study have a large number of patients diagnosed with metastatic cancer (patients who have a high symptom burden requiring timeintensive management), the physicians were able to complete early advance care plans for approximately 70% of their new patients a median of 1 day after first visit, and place code status orders for 46% of their patients. Providers who treat a lower volume of patients with metastatic disease should be able to conduct ACP also. We found that many of our older patients had already completed advance directives years before their cancer diagnosis during estate planning, but they had not reflected on the documents’ contents for quite some time. Anecdotally, we also observed that many middle-aged and older patients had experienced the death of a loved one who did not have formal advance directives, and this experience provided them the context to make ACP comfortable on the first visit. We have included two case studies of patients who participated in the feasibility study at the end of the article. Many of the patients had no prior CSOs at our institution despite multiple encounters with health professionals from prior hospitalizations. However, the CSO remained consistently DNR with future hospital admissions after it was placed in the outpatient oncology encounter, likely reflecting a patient’s understanding of the ACP discussions. Tracking and ensuring ACP completion is challenging without an electronic ACP navigator in the EHR. The navigator was incorporated into the EHR after the feasibility study was completed. Review of oncologist 1’s patients’
1236
EHRs showed that providers discussed ACP and handed out guidebooks to many new patients, but did not follow up in certain instances. Additionally, completing ACP during a highvolume clinic is difficult. Oncologist 1’s volume of patient encounters was 20% greater than oncologist 2, despite 20% less clinic time, possibly accounting for some of the differences in ACP documentation between the two oncologists. Our study has several limitations. The study was small; there were only 48 patients analyzed and two participating oncologists. We also did not evaluate the effects of early advance care planning on patient-reported outcomes such as quality of EOL care, satisfaction with care, and psychological distress. Another limitation is that we analyzed only whether an ADN was present in the EHR—which we used as a surrogate for a thorough, values-oriented conversation—without evaluating the content of the note and quality of the discussion. Last, the oncology staff’s perspective toward the work flow and tools was not formally assessed as part of this feasibility study. It is unclear whether other Kellogg Cancer Center oncologists will be receptive to and enthusiastic about conducting early ACP, and whether these high rates of early ACP documentation will be sustainable in light of multiple quality metrics currently being measured at our cancer center. It is also unknown whether this early ACP process is appropriate for those patients with incurable malignancies which have a significantly longer survival, or when is the optimal moment in the disease process to carry out these discussions. Future directions include expanding the initiative to all oncologists at the Kellogg Cancer Center and developing similar initiatives to enhance provider-led, development of advance care plans in other chronic, medically ill populations, with plans to set institutional targets for goals-of-care documentation. ACP completion can be considered a quality metric similar to meaningful use as defined by Medicare, and reviewed at a physician and administrative level. Future studies will determine whether early ACP improves quality of care and decreases utilization of resources near EOL by analyzing the EOL database for those patients with early versus late ACP. To date, there have been no prospective data to measure whether systematic, early ACP at a cancer center initiated by the oncology treatment team affects EOL care. A randomized trial of oncologist-led, early ACP utilizing the ACP guidebook compared to standard oncologic care is planned which will include evaluating patient and caregiver quality of EOL care, satisfaction with care, and psychological distress, as well as health care resource utilization near EOL. The landmark New England Journal of Medicine article by Temel et al.17 demonstrated that early palliative care integrated with standard oncology care improved patient reported outcomes, disease understanding and key measures of quality EOL care. However, the majority of cancer centers in the United States and worldwide do not have access to palliative care providers within the cancer center or the ability to coordinate same day appointments with oncology, given the current shortage of palliative care physicians. We have developed an ACP intervention that utilizes resources available at and appropriate for our cancer center. Other institutions should explore interventions that utilize their available resources and staff within their cancer center to enhance disease understanding and improve goals-of-care documentation. The exact interventions are less important than developing a formal
OBEL ET AL.
cancer center program to address and develop advance care plans for patients with cancer. Acknowledgments
Previously presented as Abstract Poster Presentation, 2012 ASCO Quality Symposium and Abstract Poster Presentation, 2013 ASCO Quality Symposium. The authors express sincere gratitude to Dr. Theodore Mazzone, Chairman of Medicine, for his support for and commitment to improving quality of care for significantly ill patients at our healthcare system, to Sarah Dlouhy for her insight when creating the Guidebook and physician and staff educational tools, to Tyler Bauer and Linda Green, RN who have supported project development and are taking it to the next phase, and to all our cancer patients who have shared their intimate thoughts, fears, and values with their medical staff, which have made us better cancer providers. Author Disclosure Statement
No competing financial interests exist. References
1. Institute of Medicine: Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, 2013. www.iom.edu/Reports/2013/Delivering-High-Quality-CancerCare-Charting-a-New-Course-for-a-System-in-Crisis.aspx (Last accessed September 30, 1994). 2. Peppercorn JM, Smith TJ, Helft PR, et al: American Society of Clinical Oncology Statement: Toward individualized care for patients with advanced cancer. J Clin Oncol 2011;29:755–760. 3. Levy MH, Back A, Benedetti C, et al: NCCN clinical practice guidelines in oncology: Palliative care. J Natl Compr Canc Netw 2009;7:436–473. 4. Keating NL, Landrum MB, Rogers SO Jr, et al: Physician factors associated with discussions about end-of-life care. Cancer 2010;116:998–1006. 5. Temel JS, McCannon J, Greer JA, et al: Aggressiveness of care in a prospective cohort of patients with advanced NSCLC. Cancer 2008;113:826–833. 6. Earle CC, Park ER, Lai B, et al: Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol 2004;22:315–321. 7. Burris HA, Moore MJ, Andersen J, et al: Improvements in survival and clinical benefit with gemcitabine as first-line therapy for patients with advanced pancreas cancer: A randomized trial. J Clin Oncol 1997;15:2403–2413. 8. Conroy T, Desseigne F, Ychou M, et al: FOLFIRINOX versus gemcitabine for metastatic pancreatic Cancer. N Engl J Med 2011;364:1817–1825. 9. Sandler A, Gray R, Perry MC, et al: Paclitaxel-carboplatin alone or with bevacizumab for non-small cell lung cancer. N Engl J Med 2008;358:36–46. 10. Brown J, Thorpe H, Napp V, et al: Assessment of quality of life in the supportive care setting of the big lung trial in non-small cell lung cancer. J Clin Oncol 2005;23:7417– 7427. 11. Steinhauser KE, Christakis NA, Clipp EC, et al: Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284:2476– 2482.
OUTPATIENT ACP FOR PATIENTS WITH METASTATIC CANCER
12. Parker SM, Clayton JM, Hancock K, et al: A systematic review of prognositic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 2007;34:81–93. 13. Jenkins V, Fallowfield L, Saul J: Information needs of patients with cancer: Results from a large study in UK cancer centres. Br J Cancer 2001;84:48–51. 14. Wright AA, Zhang B, Ray A, et al: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665–1673. 15. Weeks, JC, Cook EF, O’Day SJ, et al: Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 1998;279:1709–1714. 16. Mack JW, Cronin A, Keating NL, et al: Associations between end-of-life discussion characteristics and care received near death: A prospective cohort study. J Clin Oncol 2012;30:4387–4395. 17. Temel JS, Greer JA, Muzikansky A, et al: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733–742. 18. Weeks JC, Catalano PJ, Cronin A, et al: Patients’ expectations about effects of chemotherapy for advanced cancer. N Eng J Med 2012;367:1616–1625.
1237
19. Gabrijel S, Grize L, Helfenstein E, et al: Receiving the diagnosis of lung cancer: Patient recall of information and satisfaction with physician communication. J Clin Oncol 2008;26:297–302. 20. Obel J, Orlando-Brooks D, Konchak C, et al: Medical Informatics: Documenting quality of end-of-life oncologic care [Abstract 311]. J Clin Oncol 2012;Suppl:34. 21. Earle CC, Park ER, Lai B, et al: Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol 2003;21:1133–1138. 22. Ramchandra K, Trieu S, Harman S, et al: Outpatient palliative care at a tertiary cancer center: Perceptions, pathways, and pitfalls [Abstract 28]. J Clin Oncol 2012;Suppl 34. 23. Temel J, Greer A, Gallagher E, et al: Electronic prompt to improve outpatient code status documentation for patients with advanced lung cancer. J Clin Oncol 2013;31:710– 715.
Address correspondence to: Jennifer Obel, MD 2650 Ridge Avenue Evanston IL, 60201 E-mail: [email protected]
Case Studies of Two Patients Who Participated in the Feasibility Study Early Advance Care Planning Leads to a Change in Upfront Treatment
An 81-year-old man with significant comorbidities, including congestive heart failure, hypertension, diabetes mellitus, mild dementia, and spinal stenosis was diagnosed with stage IIIA gastroesophogeal adenocarcinoma. Treatment options discussed included curative intent chemotherapy and radiation followed by surgery versus palliative radiation (with or without chemotherapy). The patient elected to pursue chemotherapy and radiation followed by esophagectomy after surgical consultation. At the initial oncology visit based on early advance care planning (ACP) protocol, the collaborative nurse reported that the patient’s wife was the medical power of attorney (POA) and the patient would not desire extraordinary measures near the end of life. As goal assessment proceeded with the oncologist and nurse, the patient discussed how death was natural at his age, but that he would want to consider curative-intent therapy. During chemotherapy and ACP teaching, the nurse asked standard questions regarding goals of care based on ACP protocol. The patient reported that his quality of life was low. His age and medical problems made him wonder about the value of medical interventions. At the next visit, the oncologist reviewed the advance directive notes (ADNs) recorded by the nurse. The oncologist, the patient, and his wife decided that esophagectomy should not be pursued because of patient views and the inherent morbidity of the procedure. Palliative treatment was chosen. In the absence of the formal ACP
process, this decision may not have occurred as part of treatment planning. Early Advance Care Planning Leads to Consideration of Total Parenteral Nutrition At End Of Life
A 48-year-old otherwise healthy woman was diagnosed with stage IV gastric cancer involving the peritoneum when she developed early satiety. During nurse-led discussion of goals of care according to ACP protocol, the patient recalled how painful it was to watch her mother remain on a ventilator in the ICU after a ruptured cerebral aneurysm. The oncologist reviewed the patient’s prior EOL experiences, beliefs, and near-term goals; she did not want extraordinary measures including resuscitation or chemotherapy when her quality of life became low. Four months later, the patient developed significant radiographic progression of disease. The oncologist readdressed her advance care plan and goals of care. The patient reported that it was important to attend her daughter’s wedding in 6 weeks. Second-line chemotherapy was chosen. An alternative plan was also created in the event that the patient’s oral intake became limited. The patient decided she would consider temporary total parenteral nutrition in order to attend the wedding that would be stopped and hospice pursued afterward. The patient’s malignancy responded to second-line therapy and she attended the wedding. Consideration of total parenteral nutrition and second-line chemotherapy occurred consequent to the application of the ACP protocol.
Outpatient Advance Care Planning for Patients with Metastatic Cancer: A Pilot Quality Improvement Initiative Jennifer Obel, MD, Bruce Brockstein, MD, Michael Marschke, MD, Ari Robicsek, MD, Chad Konchak, MBA, Meredith Sefa, MMI, Nicole Ziomek, BS, Tiffany Benfield, MS, Carrie Peterson, BS, Cory Gustafson, MS, Joann Eriksson, APN, OCN, Abigail Harper, PharmD, Cory Tabachow, MHA, Michael Raymond, MD, and Thomas Hensing, MD
Abstract
Background: Despite American Society of Clinical Oncology (ASCO) and National Comprehensive Cancer Network (NCCN) guidelines recommending that oncologists discuss advance care planning (ACP) with patients with stage IV cancer early in treatment, in standard practice ACP remains a late step of a terminal illness. ACP preserves comfort and dignity at the end of life, ensuring patients receive the care that they desire. Methods and Materials: A feasibility study in patients with stage IV cancer was developed to test whether incorporating ACP immediately after a stage IV cancer diagnosis is feasible. Inclusion criteria were consecutive new gastrointestinal and thoracic oncology patients treated by one of two oncologists. The project included creation of new workflow; development of an ACP patient education guidebook; training seminars for oncology staff; and enhancements to the electronic health record (EHR) to improve ACP documentation. Results: The oncologists recorded 33 of 48 (69%) advance directive notes (ADNs) and 22 of 48 (46%) code status orders (CSOs) in the EHR of patients newly diagnosed with stage IV cancer by following ACP protocol during the 6-month trial period. Twenty-one of 33 ADNs were entered within 7 days of first consultation. The median time to ADN placement was 1 day after consultation. Twenty-two of 33 patients with ADNs had CSOs placed, of which 16 were do-not-resuscitate (DNR) and 6 were full code. One year prior to the feasibility study, only 1 of 75 deceased patients of the two oncologists had outpatient ADNs and CSOs. Conclusions: Outpatient ACP is feasible early in the care of patients with stage IV cancer through systematic improvement in workflow and motivated providers. Education and infrastructure were pivotal to routine development of advance care plans.
Introduction
T
he Institute of Medicine (IOM) 2013 report entitled, ‘‘Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis,’’ estimates cancer care will cost $173 billion by 2020.1 The IOM report recommends that in the setting of advanced cancer, the medical team should provide patients with end-of-life (EOL) care consistent with patients’ values and preferences, and revisit and implement their advance care plans throughout the cancer care continuum. Despite national guidelines from the IOM, the American Society of Clinical Oncology (ASCO), and the National Comprehensive Cancer Network (NCCN) that recommend oncologists discuss advance care planning (ACP) and goals
of care with patients with incurable cancer early in the disease process,2,3 in standard practice, ACP remains a late step. In general, oncologists tend to discuss ACP when patients have no further standard chemotherapy options available.4 Even to an oncologist, death can be a challenging topic to broach with a patient. Physicians may be uncomfortable discussing EOL because their medical training focuses primarily on curing or treating illness. EOL discussions may symbolize failure to the physician and a loss of hope for the patient. Additionally, these long and intensive discussions are time consuming and emotionally trying for the patient and the physician, and there is no financial incentive for the physician to encourage ACP discussions in the current health care system.
NorthShore University HealthSystem, Evanston, Illinois. Accepted September 22, 2014.
1231
1232
In general, treatment of patients with incurable cancer is becoming increasingly aggressive, exemplified by the greater use of multiple chemotherapy regimens and radiation treatments and increased rates of hospital admission, emergency department visits, and intensive care utilization during the final month of life.5,6 Despite chemotherapy advances, the prognosis of many incurable solid tumors remains poor, with median survivals of less than 1 year, in particular for metastatic lung cancer and noncolorectal gastrointestinal cancers.7–9 While treatment may extend survival and improve symptoms temporarily, patients and their families experience significant physical and psychological suffering during the illness.10 The majority of patients with incurable cancer, however, report wanting timely and realistic prognostic information from their physicians to prepare themselves and their families.11–13 When patients understand their prognoses accurately, the majority of patients describe a wish to die comfortably at home, not in a hospital setting.14 Furthermore, patients with advanced cancer who understand they are terminally ill are more likely to receive earlier symptom-directed care and referral to hospice, while those who overestimate their prognosis are more likely to choose an aggressive course of therapy such as additional chemotherapy.15 Research has demonstrated that when EOL discussions occur on a timely basis, the patient dies in his or her chosen place of death, which results in decreased suffering across the family system.16 Family members of patients who receive hospice services report improved psychological and physical health, less complicated bereavement, and higher satisfaction with care, compared with those family members who care for loved ones who do not receive hospice.17 Undesired treatment and resuscitation may occur if the patient does not understand the trajectory of the illness and the physician does not review goals of care with the patient. Studies have shown that 69% of patients with metastatic lung cancer and 81% of patients with metastatic colon cancer receiving palliative chemotherapy failed to understand that treatment was not curative.18 Additionally, only half of patients with a new diagnosis of lung cancer accurately recalled information about the goal of treatment shortly after the oncology visit.19 Our EOL quality improvement team conducted an ACP pilot in patients newly diagnosed with stage IV cancer to assess the feasibility of finalizing an advance care plan shortly after establishing the cancer diagnosis. Goals of the quality improvement project include: (1) create new processes and workflow to ensure timely creation of advance care plans; (2) educate outpatient oncology staff on newly designed processes and methods to develop an advance care plan based on patient values and goals instead of centering ACP discussions on obtaining a code status order; (3) change the EOL conversation to include templated, open-ended questions that define the patient’s understanding of his or her illness and incorporate personal values, goals, and desire for extraordinary measures into the advance care plan. Methods
OBEL ET AL.
Shore-employed oncologists treat patients at three outpatient oncology centers (Kellogg Cancer Center). Outpatient and inpatient providers utilize a common electronic health record (EHR) called EPIC (Epic Systems Corporation, Verona, WI). An EOL quality database of nine metrics was created to measure quality of EOL care for patients with stage IV cancer.20 By analyzing the EOL database, it was found that most patients with metastatic cancer at NorthShore did not have outpatient ACP documentation in an advance directive note (ADN; a note type filed under this title) that is easily searchable in the EHR. The majority of EOL discussions were documented during hospitalization during the final stages of illness. For instance, from November 2011 to September 2012, only 2% of Kellogg Cancer Center’s deceased cancer patients had outpatient ADNs and only 29% of deceased cancer patients had ADNs placed during hospitalization. Likewise, only 4% of deceased cancer patients had outpatient code status orders (CSOs) compared to 56% of deceased patients whose CSOs were entered during inpatient stays. Prior to the quality improvement project, oncologists often documented goals of care in the progress note, as opposed to the ADN, when the physicians believed that the patient was near death. Additionally, oncologists were not frequently obtaining outpatient CSOs. A uniform manner regarding how and when to document goals of care and code status did not exist at Kellogg Cancer Center prior to this feasibility study. Our ACP Task Force, which included oncologists representing the Oncology Quality Improvement subcommittee, cancer center administrators, hospice and palliative care physicians, and internal medicine physicians, devised systematic procedures to introduce and facilitate ACP at diagnosis for incurable cancer patients (Fig. 1). During study design and implementation, the project was presented at semimonthly Division of Hematology and Oncology meetings, quarterly Cancer Committee meetings, and quarterly Oncology Quality Improvement Subcommittee meetings. The intervention qualified as a quality improvement project according to the NorthShore Research Institute Institutional Review Board (IRB) and received IRB exempt status. Patients
The inclusion criteria for this pilot study were consecutive new gastrointestinal and thoracic oncology patients with stage IV cancer seeing one of two oncologists from March 2013 to August 2013. The data were analyzed in two, 3-month time periods based on the assumption that the rate of early ACP would increase over time as provider experience increased. All patients must have been seen at least twice as outpatients to be included in the cohort, although the ACP process often began at the first visit. We compared this cohort to the same two oncologists’ historical controls who died 1 year prior to the feasibility study. Deceased patients were identified by joining Social Security death index to our organization’s enterprise data warehouse. Additionally, we also compared the intervention cohort to controls seeing two nonparticipating oncologists as new patients during the feasibility time frame.
Background
NorthShore University HealthSystem is an integrated, community-based health system comprising outpatient and subspecialty physicians who admit to four hospitals. North-
Intervention
During the first visit to the oncologist, an oncology nurse introduced the concept of ACP to patients by asking four
OUTPATIENT ACP FOR PATIENTS WITH METASTATIC CANCER
FIG. 1.
1233
Advance Care Planning Kellogg Cancer Center workflow for new stage IV cancer patients.
standard questions (Fig. 2). The oncology nurse asked patients who the physician should contact for emergency decisions if the patient is not capable of decision making, whether this person knows the patient’s wishes, and whether this was written down. Patients were asked if they have an advance directive, and if they would like more information about ACP. The nurse presented the acquired ACP information to the oncologist as part of nursing intake. The oncologist conducted a standard consultation and reviewed the ACP information with the patient. The oncologist was encouraged to enter an ADN and CSO at the first appointment if the patient had clearly defined goals and/or had completed a prior advance directive. If additional education was necessary, the oncologist indicated that the nurse would meet with the patient to provide ACP and chemotherapy education. The
patient received an ACP guidebook, which is an educational workbook on ACP (Fig. 3). At the next appointment, the nurse utilized the ACP guidebook to elicit patient goals, beliefs, and EOL views in order to complete an ADN in the EHR. A social worker was consulted for patients and family members struggling with ACP. The oncologist reviewed goals of care at an additional follow-up appointment by reviewing the patient’s understanding of the illness and his or her belief system. The oncologist filed another ADN in the EHR and a CSO was finalized as an order. At the point of recognized cancer progression, the algorithm directed the care team to revisit the patient’s prior goals of care, discuss therapy options and extraordinary measures in the context of the patient’s current wishes, and review hospice as an alternative treatment choice. The oncologist
FIG. 2. EPIC Advance Care Planning Navigator, which allows review of prior code status orders and advance directives notes, scripted intake questions, placement of advance directive notes, and code status orders. Fictionalized patient. ª 2014 Epic Systems Corporation.
1234
OBEL ET AL.
FIG. 3. Advance Care Planning Guidebook section to assess patient values on a scale Not Important (1,2), Somewhat Important (4,5), Very Important (6,7). would enter a new ADN and CSO into the EHR if there was a change in goals of care. The ADNs placed at cancer progression were not measured as part of the feasibility study. While these steps were designed as an ideal workflow, ACP discussions may have taken place at different time points based on patient and provider schedules and the patient’s willingness to discuss these concepts. Tools
An educational guidebook for patients was created, which introduced the concepts of medical power of attorney (POA) and living wills. It incorporated tools, work sheets, and medical scenarios to elicit patients’ goals and wishes (Fig. 3). The guidebook, created by the ACP Task Force, encouraged the patient to communicate these views to loved ones, their medical POA, and health care team. An electronic, EPIC-based ACP navigator was designed for the EHR that allowed clinicians to efficiently review pertinent ACP information and document additional ACP information pertaining to the patient that flows from one patient encounter to another in the EHR (Fig. 2, which rep-
resents a fictionalized patient). At the start of the project, the EHR did not permit review of prior CSOs; ADNs could be viewed only be filtering the note type category. The ACP navigator includes a section entitled ACP Report where prior CSOs and ADNs from other encounters can be reviewed. The ACP Report also exists as a hyperlink in the patient header for both inpatients and outpatients. In the ACP navigator, nursing staff record the patient’s answers to templated questions and the medical POA with contact phone number. Physicians can document ADNs that automatically file under this note type and place code status orders. Hyperlinks to the ACP guidebook and pertinent forms, including the Illinois POA form and DNR documents, exist in the navigator as well. Because a patient’s code status decision can change over time, the EHR requires that a CSO is recorded at each inpatient encounter. A Best Practice Advisory (BPA) was created to increase code status continuity among admissions and episodes of care. This BPA is an alert that activates when a physician orders full code for a patient who had a prior DNR or limited code status order. It requires the ordering provider to specify an override reason for the change to full code.
OUTPATIENT ACP FOR PATIENTS WITH METASTATIC CANCER Education
An educational slide set was developed that focused on the importance of ACP, the role of each provider, and the necessary tools and methods to incorporate ACP into daily practice. Four oncology nurses, two nurse practitioners, a nurse navigator, three social workers, and oncology administrators attended a 90-minute face-to-face education session while physicians attend a 40-minute session, both conducted by the Director of Hospice and Palliative Medicine. At a follow-up meeting 1 month later, providers were interviewed regarding their experiences. Results
The oncologists recorded 33 of 48 (69%) ADNs and 22 of 48 (46%) CSOs in the EHR of new stage IV patients by following the ACP protocol during the 6-month trial period. Oncologist 1 recorded an ADN in the EHR of 10 of 21 new stage IV patients and oncologist 2 recorded an ADN in the EHR of 23 of 27 new stage IV patients. More than half of ADNs—21 of 33 patients—were entered into the EHR within 7 days of first consultation. ADNs were completed a median of 1 day after consultation in both oncologists’ cohort of new patients, but a mean of 15.3 and 7 days after first consultation in oncologist 1 and oncologist 2’s practices, respectively. CSOs were entered less frequently than ADNs in the oncologists’ cohort of patients; 11 of 33 patients with ADNs did not have CSOs placed. Many patients had CSOs entered 1–3 days later than the ADN. However, 3 patients had CSOs placed more than 7 days after the ADN (day 25, 28, 50) possibly reflecting the greater difficulty in translating patient goals into a CSO, or subsequent conversations that transpired. Of the 22 CSOs, 16 were DNR and 6 were full code, although 2 full CSOs were changed to DNR at future health care interactions. Of the 16 DNR orders, 4 patients had prior full-code status, 1 had a prior DNR, and 11 had no prior CSOs in the EHR from prior inpatient documentation. Of the patients with outpatient DNR orders placed in the oncology encounter, a total of 8 patients had been hospitalized subsequent to their oncology consultation, all of whom had inpatient DNR orders entered at hospitalization. There was no change in the rate of early ACP over the two time periods in both practices. To compare to historical controls, the charts of the two oncologists’ deceased patients 1 year prior to the feasibility study were evaluated. Only 1 of 75 deceased patients had outpatient ADNs and CSOs entered into the EHR. Notably, 30 of 75 and 49 of 75 deceased patients had ADNs and CSOs respectively recorded in an inpatient encounter. Two oncologists who had similar practices and who did not participate in the feasibility study recorded 1 of 52 ADNs and 1 of 52 CSOs in the EHR of newly diagnosed stage IV patients over the same time period as the feasibility study. Discussion
This feasibility study demonstrates that education and improvement in process and infrastructure can significantly increase development of outpatient advance care plans in patients with incurable cancer shortly after a cancer diagnosis is made. While ACP is time consuming, we found that pro-
1235
fessionals who are comfortable conducting goals-of-care conversations and who have additional tools that facilitate this conversation can develop outpatient advance care plans early in cancer care. By encouraging aspects of goal assessment by nonphysician staff, the process became more manageable for physicians. The workflow was devised to accomplish two goals: to create a forum for education about goals of care separate from the first consultation and to allow partnering with nurses for goal assessment. Patients may be less threatened by a nurse-led discussion of goals of care, because nurses do not discuss prognosis or make definitive treatment decisions. This process also empowers the oncology nurse to act as a patient advocate, voicing the patient’s concerns and values to the team. However, it was the oncologist’s responsibility to finalize an advance care plan. Other cancer centers have implemented different models to enhance advance care planning documentation. In one model, social workers obtained advance directives at the palliative care visit; 18% of patients had advance directives and 33% of patients had code status orders placed in the EHR after palliative care visits.22 Another cancer center assessed the effect of electronic prompts to encourage oncology providers to document code status in the outpatient EHR. The electronic prompts increased the rate of code status documentation from 14% to 33%.23 At Kellogg Cancer Center, the process of obtaining advance directives, code status orders, and medical POA assignment became part of regular cancer care, which may account for our high rate of ACP documentation. Frequent discussion of the project raised general awareness within the Hematology and Oncology Division regarding ACP; there was a trend toward increased ADNs in quarterly reports of the EOL database. Despite the fact that the two oncologists who participated in the pilot study have a large number of patients diagnosed with metastatic cancer (patients who have a high symptom burden requiring timeintensive management), the physicians were able to complete early advance care plans for approximately 70% of their new patients a median of 1 day after first visit, and place code status orders for 46% of their patients. Providers who treat a lower volume of patients with metastatic disease should be able to conduct ACP also. We found that many of our older patients had already completed advance directives years before their cancer diagnosis during estate planning, but they had not reflected on the documents’ contents for quite some time. Anecdotally, we also observed that many middle-aged and older patients had experienced the death of a loved one who did not have formal advance directives, and this experience provided them the context to make ACP comfortable on the first visit. We have included two case studies of patients who participated in the feasibility study at the end of the article. Many of the patients had no prior CSOs at our institution despite multiple encounters with health professionals from prior hospitalizations. However, the CSO remained consistently DNR with future hospital admissions after it was placed in the outpatient oncology encounter, likely reflecting a patient’s understanding of the ACP discussions. Tracking and ensuring ACP completion is challenging without an electronic ACP navigator in the EHR. The navigator was incorporated into the EHR after the feasibility study was completed. Review of oncologist 1’s patients’
1236
EHRs showed that providers discussed ACP and handed out guidebooks to many new patients, but did not follow up in certain instances. Additionally, completing ACP during a highvolume clinic is difficult. Oncologist 1’s volume of patient encounters was 20% greater than oncologist 2, despite 20% less clinic time, possibly accounting for some of the differences in ACP documentation between the two oncologists. Our study has several limitations. The study was small; there were only 48 patients analyzed and two participating oncologists. We also did not evaluate the effects of early advance care planning on patient-reported outcomes such as quality of EOL care, satisfaction with care, and psychological distress. Another limitation is that we analyzed only whether an ADN was present in the EHR—which we used as a surrogate for a thorough, values-oriented conversation—without evaluating the content of the note and quality of the discussion. Last, the oncology staff’s perspective toward the work flow and tools was not formally assessed as part of this feasibility study. It is unclear whether other Kellogg Cancer Center oncologists will be receptive to and enthusiastic about conducting early ACP, and whether these high rates of early ACP documentation will be sustainable in light of multiple quality metrics currently being measured at our cancer center. It is also unknown whether this early ACP process is appropriate for those patients with incurable malignancies which have a significantly longer survival, or when is the optimal moment in the disease process to carry out these discussions. Future directions include expanding the initiative to all oncologists at the Kellogg Cancer Center and developing similar initiatives to enhance provider-led, development of advance care plans in other chronic, medically ill populations, with plans to set institutional targets for goals-of-care documentation. ACP completion can be considered a quality metric similar to meaningful use as defined by Medicare, and reviewed at a physician and administrative level. Future studies will determine whether early ACP improves quality of care and decreases utilization of resources near EOL by analyzing the EOL database for those patients with early versus late ACP. To date, there have been no prospective data to measure whether systematic, early ACP at a cancer center initiated by the oncology treatment team affects EOL care. A randomized trial of oncologist-led, early ACP utilizing the ACP guidebook compared to standard oncologic care is planned which will include evaluating patient and caregiver quality of EOL care, satisfaction with care, and psychological distress, as well as health care resource utilization near EOL. The landmark New England Journal of Medicine article by Temel et al.17 demonstrated that early palliative care integrated with standard oncology care improved patient reported outcomes, disease understanding and key measures of quality EOL care. However, the majority of cancer centers in the United States and worldwide do not have access to palliative care providers within the cancer center or the ability to coordinate same day appointments with oncology, given the current shortage of palliative care physicians. We have developed an ACP intervention that utilizes resources available at and appropriate for our cancer center. Other institutions should explore interventions that utilize their available resources and staff within their cancer center to enhance disease understanding and improve goals-of-care documentation. The exact interventions are less important than developing a formal
OBEL ET AL.
cancer center program to address and develop advance care plans for patients with cancer. Acknowledgments
Previously presented as Abstract Poster Presentation, 2012 ASCO Quality Symposium and Abstract Poster Presentation, 2013 ASCO Quality Symposium. The authors express sincere gratitude to Dr. Theodore Mazzone, Chairman of Medicine, for his support for and commitment to improving quality of care for significantly ill patients at our healthcare system, to Sarah Dlouhy for her insight when creating the Guidebook and physician and staff educational tools, to Tyler Bauer and Linda Green, RN who have supported project development and are taking it to the next phase, and to all our cancer patients who have shared their intimate thoughts, fears, and values with their medical staff, which have made us better cancer providers. Author Disclosure Statement
No competing financial interests exist. References
1. Institute of Medicine: Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, 2013. www.iom.edu/Reports/2013/Delivering-High-Quality-CancerCare-Charting-a-New-Course-for-a-System-in-Crisis.aspx (Last accessed September 30, 1994). 2. Peppercorn JM, Smith TJ, Helft PR, et al: American Society of Clinical Oncology Statement: Toward individualized care for patients with advanced cancer. J Clin Oncol 2011;29:755–760. 3. Levy MH, Back A, Benedetti C, et al: NCCN clinical practice guidelines in oncology: Palliative care. J Natl Compr Canc Netw 2009;7:436–473. 4. Keating NL, Landrum MB, Rogers SO Jr, et al: Physician factors associated with discussions about end-of-life care. Cancer 2010;116:998–1006. 5. Temel JS, McCannon J, Greer JA, et al: Aggressiveness of care in a prospective cohort of patients with advanced NSCLC. Cancer 2008;113:826–833. 6. Earle CC, Park ER, Lai B, et al: Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol 2004;22:315–321. 7. Burris HA, Moore MJ, Andersen J, et al: Improvements in survival and clinical benefit with gemcitabine as first-line therapy for patients with advanced pancreas cancer: A randomized trial. J Clin Oncol 1997;15:2403–2413. 8. Conroy T, Desseigne F, Ychou M, et al: FOLFIRINOX versus gemcitabine for metastatic pancreatic Cancer. N Engl J Med 2011;364:1817–1825. 9. Sandler A, Gray R, Perry MC, et al: Paclitaxel-carboplatin alone or with bevacizumab for non-small cell lung cancer. N Engl J Med 2008;358:36–46. 10. Brown J, Thorpe H, Napp V, et al: Assessment of quality of life in the supportive care setting of the big lung trial in non-small cell lung cancer. J Clin Oncol 2005;23:7417– 7427. 11. Steinhauser KE, Christakis NA, Clipp EC, et al: Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284:2476– 2482.
OUTPATIENT ACP FOR PATIENTS WITH METASTATIC CANCER
12. Parker SM, Clayton JM, Hancock K, et al: A systematic review of prognositic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 2007;34:81–93. 13. Jenkins V, Fallowfield L, Saul J: Information needs of patients with cancer: Results from a large study in UK cancer centres. Br J Cancer 2001;84:48–51. 14. Wright AA, Zhang B, Ray A, et al: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665–1673. 15. Weeks, JC, Cook EF, O’Day SJ, et al: Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 1998;279:1709–1714. 16. Mack JW, Cronin A, Keating NL, et al: Associations between end-of-life discussion characteristics and care received near death: A prospective cohort study. J Clin Oncol 2012;30:4387–4395. 17. Temel JS, Greer JA, Muzikansky A, et al: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733–742. 18. Weeks JC, Catalano PJ, Cronin A, et al: Patients’ expectations about effects of chemotherapy for advanced cancer. N Eng J Med 2012;367:1616–1625.
1237
19. Gabrijel S, Grize L, Helfenstein E, et al: Receiving the diagnosis of lung cancer: Patient recall of information and satisfaction with physician communication. J Clin Oncol 2008;26:297–302. 20. Obel J, Orlando-Brooks D, Konchak C, et al: Medical Informatics: Documenting quality of end-of-life oncologic care [Abstract 311]. J Clin Oncol 2012;Suppl:34. 21. Earle CC, Park ER, Lai B, et al: Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol 2003;21:1133–1138. 22. Ramchandra K, Trieu S, Harman S, et al: Outpatient palliative care at a tertiary cancer center: Perceptions, pathways, and pitfalls [Abstract 28]. J Clin Oncol 2012;Suppl 34. 23. Temel J, Greer A, Gallagher E, et al: Electronic prompt to improve outpatient code status documentation for patients with advanced lung cancer. J Clin Oncol 2013;31:710– 715.
Address correspondence to: Jennifer Obel, MD 2650 Ridge Avenue Evanston IL, 60201 E-mail: [email protected]
Case Studies of Two Patients Who Participated in the Feasibility Study Early Advance Care Planning Leads to a Change in Upfront Treatment
An 81-year-old man with significant comorbidities, including congestive heart failure, hypertension, diabetes mellitus, mild dementia, and spinal stenosis was diagnosed with stage IIIA gastroesophogeal adenocarcinoma. Treatment options discussed included curative intent chemotherapy and radiation followed by surgery versus palliative radiation (with or without chemotherapy). The patient elected to pursue chemotherapy and radiation followed by esophagectomy after surgical consultation. At the initial oncology visit based on early advance care planning (ACP) protocol, the collaborative nurse reported that the patient’s wife was the medical power of attorney (POA) and the patient would not desire extraordinary measures near the end of life. As goal assessment proceeded with the oncologist and nurse, the patient discussed how death was natural at his age, but that he would want to consider curative-intent therapy. During chemotherapy and ACP teaching, the nurse asked standard questions regarding goals of care based on ACP protocol. The patient reported that his quality of life was low. His age and medical problems made him wonder about the value of medical interventions. At the next visit, the oncologist reviewed the advance directive notes (ADNs) recorded by the nurse. The oncologist, the patient, and his wife decided that esophagectomy should not be pursued because of patient views and the inherent morbidity of the procedure. Palliative treatment was chosen. In the absence of the formal ACP
process, this decision may not have occurred as part of treatment planning. Early Advance Care Planning Leads to Consideration of Total Parenteral Nutrition At End Of Life
A 48-year-old otherwise healthy woman was diagnosed with stage IV gastric cancer involving the peritoneum when she developed early satiety. During nurse-led discussion of goals of care according to ACP protocol, the patient recalled how painful it was to watch her mother remain on a ventilator in the ICU after a ruptured cerebral aneurysm. The oncologist reviewed the patient’s prior EOL experiences, beliefs, and near-term goals; she did not want extraordinary measures including resuscitation or chemotherapy when her quality of life became low. Four months later, the patient developed significant radiographic progression of disease. The oncologist readdressed her advance care plan and goals of care. The patient reported that it was important to attend her daughter’s wedding in 6 weeks. Second-line chemotherapy was chosen. An alternative plan was also created in the event that the patient’s oral intake became limited. The patient decided she would consider temporary total parenteral nutrition in order to attend the wedding that would be stopped and hospice pursued afterward. The patient’s malignancy responded to second-line therapy and she attended the wedding. Consideration of total parenteral nutrition and second-line chemotherapy occurred consequent to the application of the ACP protocol.
