key: cord-0875581-yf04rv6m authors: Tan, Audrey J.; Yamarik, Rebecca; Brody, Abraham A.; Chung, Frank R.; Grudzen, Corita title: Development and protocol for a nurse-led telephonic palliative care program date: 2021-01-21 journal: Nurs Outlook DOI: 10.1016/j.outlook.2020.12.011 sha: 0a98c42f72b2ae7bedc623a71be164d52f77032f doc_id: 875581 cord_uid: yf04rv6m BACKGROUND: The COVID-19 pandemic has resulted in a profound transformation of health care delivery toward telemedicine models. PURPOSE: We present the structure of a nurse-led telephonic palliative program and operational metrics to influence further development of tele-palliative programs. METHODS: The nurses engage with seriously ill patients for 6 months with the goal of discussing advance care planning (ACP) and addressing self-identified issues related to their illness. FINDINGS: Of the first 100 program graduates, 78% were actively engaged and 51% named a health care agent and/or engaged in ACP. Of the 18 patients who died during the study, 13 (72%) were enrolled in hospice services. DISCUSSION: Our preliminary results indicate that seriously ill patients are willing to engage with nurses and to participate with discussions on ACP. CONCLUSION: Given the gaps in health care exposed by the COVID-19 pandemic, this innovative program serves as an important model for bringing palliative care directly to patients. The arrival of the COVID-19 pandemic has prompted a rapid transformation of health care from a traditional outpatient clinic model to a telemedicine model. The transformation was performed out of necessity and with the support of flexibilities provided by Centers for Medicaid and Medicare Services and private insurers around reimbursement, allowing many clinicians across hospice and palliative care settings to move rapidly toward telephonic palliative care. However, programs had, and continue to have, limited guidance on best practices (CMS.gov, 2020) . Telephonic care has not traditionally been used in palliative care and specifically, nurse-led models are a relatively new area for the field. Payers have taken the lead in developing telephonic programs to address the diverse needs of patients with serious illness. Aetna's Compassionate Care Program supports members with advanced illnesses via nurse case managers, which demonstrated a reduction in acute care days by 82%, a reduction in ICU care days by 86% and a decrease in emergency department (ED) use by 78% (Krakauer et al., 2014) . SCAN Health Plan's Program for Advanced Illness, a telephonic case management program carried out by nurses, has demonstrated reductions in Medicare costs while increasing hospice utilization for their members (Spettell et al., 2009; Yamarik & Mattews, 2015) . It remains unclear, however, how nurse-led telephonic care may affect quality of life, symptom burden, and caregiver distress. Additionally, patient identification, structure, and operational aspects of these programs have not been well described, making program replication challenging. An ED visit is a sentinel event for older adults with serious illness, often signifying a breakdown in care coordination and worsening clinical and functional status, thus making it an ideal setting from which to identify patients and caregivers who may benefit from palliative care services (Ferrell et al., 2018; Grudzen et al., 2016; Smith et al., 2010) . Delivering palliative care to these patients via a nurse-led telephonic model may assist these patients with controlling their symptoms, establishing goals of care, and improving quality of life for patients with advanced illnesses in a novel, accessible, and cost-effective model of care. Our manuscript aims to (1) describe the development and implementation of a nurse-led telephonic palliative care program for patients with serious illness who are discharged after an ED visit or an observation stay and (2) provide preliminary operational and clinical outcomes for the first 100 program graduates. The nurse-led telephonic palliative care program is part of the Emergency Medicine Palliative Care Access research study, a large Patient-Centered Outcomes Research Institute-funded randomized control trial comparing facilitated, outpatient specialty palliative care to nurse-led telephonic palliative care delivery after an ED visit (Grudzen et al., 2019) . While the telephonic program is part of the larger trial, it operates as a pragmatic clinical initiative and not a strictly protocolized research intervention. Patients and their caregivers are recruited at 18 separate hospital EDs across nine states. Thirteen hundred and fifty patients and 675 of their informal caregivers will be enrolled over a 5-year period. English-or Spanish-speaking patients 50 years or older who are scheduled for ED discharge or ED observation status are eligible for the study. Disease criteria include advanced cancer or end-stage organ failure, which is defined as New York Heart Association Class III or IV heart failure, End-Stage Renal Disease with glomerular filtration rate <15 ml/min/m 2 , or Global Initiative for Chronic Obstructive Lung Disease Stage III, IV, or oxygen-dependent Chronic Obstructive Pulmonary Disease (National Kidney, 2002; New York Heart Association & Harvey, 1973) . English-or Spanishspeaking adult primary caregivers are also eligible to participate if they are an: (1) immediate or extended family member; or (2) close friend who lives with the eligible patient full time. Caregivers must possess a working telephone and cannot be compensated for providing care to a patient. The nurse-led telephonic palliative care program is a national program based at New York University Langone Health. A team of three registered nurses (RNs) certified in hospice and palliative nursing is supervised by two physician board-certified in hospice and palliative medicine (A.T., R.Y.), with additional clinical support and supervision provided by a board-certified geriatric and palliative nurse practitioner (A.B.). The supervisors provide clinical support via regular weekly team meetings, as well as, ad hoc support to the nurses as needed on specific cases. Initial training sessions for the three RNs is comprised of web-based modules and in-person didactic sessions. Online modules include topics on pain and symptom management (Pain Management, 2019; Symptom Management, 2015) , palliative considerations for specific disease processes (Relief of Suffering Across the Disease Trajectory, 2017), and refining communication skills (Communication Skills, 2020). Additionally, the RNs complete an online web-based training on motivational interviewing (Gardia & Barnett), a 3-hr web-and telephone-based training in Problem Solving Theory (Bakitas et al., 2009) , and an in-person training on advance care planning (ACP) through the Respecting Choices Last Steps program (Respecting Choices Last Steps). Training is also ongoing, and a portion of every monthly team meeting is dedicated to content-specific training based on needs identified by both the nurses and supervising providers in a collaborative process. Although no formal testing is incorporated into the training, any knowledge gaps are identified by program supervisors and ad hoc education is provided to the nurses. Patients enrolled in the nurse-led telephonic palliative care program are followed over a 6-month period. Within 48 to 72 hr of enrollment, the telephonic RN places an introductory call to the patient. During this call, the nurse uses standardized scripting to introduce the concepts of palliative care and discusses the purpose and structure of the program. The nurse subsequently completes a standardized palliative care assessment with the patient within two weeks of enrollment. The assessment includes the Edmonton Symptom Assessment System Revised (Chang et al., 2000) , Palliative Performance Scale (Anderson et al., 1996) and diseasespecific questions. Additional questions assess for unmet palliative care needs and are based on the eight established palliative care domains (Ferrell et al., 2018; Kroenke et al., 2003; Puchalski & Romer, 2000 ; Relief of Suffering Across the Disease Trajectory, 2017): (1) structure and processes of care; (2) physical aspects of care; (3) psychological and psychiatric aspects; (4) social aspects of care; (5) spiritual, religious, and existential aspects of care; (6) cultural aspects of care; (7) care of the patient at the end of life; and (8) ethical and legal aspects of care. Caregiver burden is assessed using the Caregiver Strain Index (Robinson, 1983 For each patient, three goals are prioritized: (1) to identify a surrogate decision maker; (2) to conduct and document an ACP conversation; (3) to address caregiver burden if the CSI > 7 ( Robinson, 1983) . ACP is emphasized due to its relevance for every patient with serious illnesses, whereas the other domains do not necessarily apply to all patients. Goals can be modified depending on patient engagement and preference, and additional needs are identified through subsequent calls with the patient. Communication with the patient's health care team is a key component of the program. Upon patient enrollment, the patient's primary provider and/or specialist receives a standard welcome letter describing the program and the role of the telephonic nurse. After 1 month, providers are contacted via email or phone, and updated on goals of care conversations, symptoms issues, and questions regarding prognosis or assistance with completion of advance directive documentation. Nurses subsequently contact providers on an ad hoc basis until the 6-month graduation from the program. In addition, for hospitalized patients, nurses reach out to inpatient providers to deliver critical information about patients' goals of care. To ensure quality assurance, a nurse self-assessment checklist is completed at 3 and 6 months to ensure adherence to programmatic guidelines. Operational metrics include patient engagement, which is defined as active communication between the telephonic nurse and patient throughout the intervention period . Additional metrics include the completion of an ACP note, identification of a health care agent (HCA), and the sharing of wishes with the patient's HCA. Call characteristics, including the amount of time spent in chart review, calls, and documentation are also tracked. An analysis of the first 100 patients enrolled in the program between April 2018 and August 2019 was performed. Table 1 demonstrates the baseline demographics and illnesses represented by this group. N u r s O u t l o o k 0 0 ( 2 0 2 1 ) 1 À6 Seventy-eight (78%) were actively engaged with a telephonic nurse until program graduation, transfer to hospice, or death. Nine patients (9%) were lost-to-follow-up and 13 patients (13%) withdrew from the program before 6 months. Eighteen patients died during the intervention period, and 13 of the 18 (72%) enrolled in hospice services prior to death. The average patient caseload per nurse per week was 18 (range: 5À26), excluding those who died or withdrew from the intervention. An average of 10 calls (range: 0À41) were made per patient with a median cumulative call duration of 223 min (range: 5À1,005) over 6 months. The nurses placed a total of 206 outgoing calls or emails to the patients' care teams and received a total of 222 responses during the intervention period. Of the 31 enrolled caregivers, nurses were able to reach 20 of them (65%) via phone or email. Table 2 describes early outcomes of the program, including advance directive completion (42%), HCA appointments (51%), and sharing of wishes with the patient's HCA (28%). We describe here the design and implementation of a novel nurse-led palliative care program. Additionally, initial analyses of our results demonstrated an overall patient engagement rate of 78% and 42% engagement with ACP. Patient engagement in our program is high, likely due to the ability to overcome those challenges encountered by palliative care delivered via the traditional outpatient model such as the logistics of scheduling, the scarcity of services, and difficulties associated with travel, particularly in more rural locations (Finlay et al., 2018) . Additionally, the COVID-19 pandemic brought forth new barriers, including infection control and concerns around the exposure to a vulnerable population. Palliative care delivered telephonically may overcome these challenges through ease of delivery and the ability to bring palliative care directly to the patient. In a study on advanced heart failure patients undergoing a mixed in-person and telephonic palliative care model, Bakitas et al. (2017) demonstrated that 69% of participants attended all intervention sessions (Bakitas et al., 2017) . A similar study describing a nurse-led, telephone-based palliative care intervention for newly diagnosed lung cancer patients showed an 85% retention rate through their 3-month program. Our data also demonstratesthat seriously ill patients are willing to engage in nurse-led telephonic palliative care programs and that engagement rates in our program do not differ from other telephonic interventions. The early analysis also demonstrated that nearly two-thirds of patients who died in our program were enrolled in hospice services, which suggests that nurses are able to facilitate goals of care discussions between patients and caregivers and to assist with referrals to hospice services telephonically. A study analyzing a Medicare fee-for-service sample population demonstrated that, in 2015, about half of the patients who died were on hospice (Teno et al., 2018) . Similarly, the National Hospice and Palliative Care Organization reported that in 2016, 48% of all Medicare decedents received 1 day or more of hospice care and were enrolled in hospice at the time of death (NHPCO Facts and Figures: 2018 Edition, 2018) . Limitations of the telephonic program can be categorized into challenges with patients, providers, and HCAs. Establishing regular contact with patients by telephone, both initially and on a weekly or biweekly basis for 6 months, is often difficult. Patients are often resistant to answering calls from numbers that are not from a trusted source, while scheduling calls for patients who are feeling ill or have numerous medical commitments is challenging. Additionally, some patients transition to skilled nursing facilities or long-term care, which can make contact more difficult. Engaging with providers is another challenge for the telephonic nurses as routes of communication vary based on institutional culture and norms. During ACP conversations, the nurses attempt to schedule a three-way telephone call with the patient and HCAs, however, this can often be challenging. When this is not possible, nurses have first engaged in an ACP conversation with the patient, followed by a separate call with the HCA to discuss and share the patient's goals and priorities of care. Our manuscript is one of the first papers to clearly describe the components of a nurse-led telephonic palliative care program for patients with serious illness. Our preliminary results indicate that seriously ill patients and their caregivers are willing to engage with nurses within the program and to participate with discussions about ACP and transitions to hospice. 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All authors approved of the final version of the manuscript.