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Complex Illness Support Objectives Alongside Standard Oncology • Discuss Complex Illness Support Care for Patients with • Review rationale for early Palliative Care Incurable Cancer • Summarize Outpatient Experience • Determine lessons learned Kim Bland, DNP, APRN-NP, FNP, AOCN

Trajectories of Function and Well-Being over Time in Eventually Fatal Chronic Illnesses Disease Trajectory High Initial Therapy (curative)

Disease-free Relapse Progression Cancer Increasing Symptoms

Organ System Failure Salvage Therapy Palliative Care

Function Progression-free

Deterioration Dementia- Frailty Low Death Comfort Care (Hospice) Time Death

Background Early, Integrated Palliative Care in Patients Outpatient Consultation Service with Metastatic Lung Cancer Justification: most patients spend most of Palliative Care Model Early palliative  Palliative care provided by physicians their time outside of hospitals care integrated and nurse practitioners 150 patients with standard oncology care with newly  Visits occurred in the Cancer Center diagnosed (medical oncology, radiation metastatic Standard oncology or chemotherapy • Opportunity NSCLC oncology care visits). – Improved quality patient care  Oncology and palliative care visits – Potentially decreased acute care stays and mortality were done in tandem or simultaneously. – Increased efficiency in health care systems and accountable care organizations  Visits were not scripted or prescribed.  If patients were admitted to the hospital, they were followed by Temel et al., NEJM (2010), 363 the palliative care team

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Results Literature Review: Early Palliative Care Newly diagnosed metastatic NSCLC patients enrolled between 2006-2009 • Incorporation of palliative care ALONGSIDE standard oncological care for NSCLC patients • Reported better QOL and less depression - Longer Median survival • Chose less aggressive care at EOL - Increased Quality of life • “Survival prolonged by 2 months” - Improved accuracy of illness perception (11.6 versus 8.9 months) - Less aggressive treatments at end of life • “Clinically meaningful improvements in quality of life and mood” - Fewer depressive symptoms

Temel et al., NEJM (2010), 363.

Early Palliative Care Intervention Project Summary:

More accurate perception of prognosis (“incurable”) October 31, 2016 through March 16, 2017

13 referring physicians: Less likely to receive aggressive treatments near 1 PCP and 12 Oncologists the end of life

Referral Guidelines How Should we Design Interventions to Improve The Delivery of Cancer Care? • Incurable cancer • Significant symptom burden related to cancer or treatment • Poor performance status (PPS 50 or less) 1. Focus on patients in the ambulatory care setting • Psychosocial situation interfering with receipt of treatment 2. Allow patients to have cancer care and Palliative Care • Multiple admissions / ER visits • Help with complex decision making / advance care planning / goals 3. Provide early and continued relief from physical and • Conflicting goals between patient and family psychological symptoms • Existential distress may benefit from support 4. Enhance communication between patients and • Patient or family request support and consultation clinicians AND patients and their families to improve • Seen by inpatient palliative care and needing follow up decision-making • Concerns about caregivers / support systems • Assistance with complex illness management 5. Provide the most appropriate care at end of life • Discussion and referral for hospice care

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ACCESS Complex Illness Support

Embedded Clinic Model • Realistic patient and family-centered care goals: – Re-evaluate throughout the duration of illness • Collaborative relationship between a host clinic – Empower patients and families about healthcare choices and palliative care staff – Facilitate referrals to appropriate community programs • All costs of the clinic operations are born by the – Encourage Advanced care planning host clinic • Expert symptom and comfort management: • Patients referred predominately from the host clinic – Whether pursuing aggressive life prolonging care or comfort measures only • Defined clinical pathways or protocols may exist – Independent of prognosis defining patient flow between the host and • Focus on patients with progressive life limiting illness with palliative care staff prognosis of one year or less

Actual Referral Diagnosis Number of patients seen: 18  Metastatic Breast • Number of patient visits: 22 (13 new and 9 follow up)  Metastatic Pancreatic – Race: 16 Caucasian / 2 Hispanic • Stage I NSCLC (Poor PS) – Gender: 2 Male / 16 female – Average age: 71.7 years old  Metastatic pleural Mesothelioma  Metastatic pelvic adenocarcinoma, unknown primary • Treatment status:  Myelodysplastic syndrome – Receiving cancer treatment: 14 • Synchronous Stage Lung cancer and metastatic melanoma – Stopped or refused treatment: 3  Metastatic lung cancer – Had not yet started treatment: 1  Stage Ib Lung cancer, new epiglottic mass probably cancer  Stage IIIA lung cancer; difficult surgery decision • Enrolled to hospice: # 10  Stage IV endometrial cancer – One remained alive • Stage IIIB cervical cancer – One patient refused hospice, expired • Dementia, prostate cancer  Acute Myelogenous Leukemia, history of Breast and Colon Cancer • Mortality: 10 of 18 expired: 56%

 **Indicates patient expired

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• Emergency department use and disposition: 2 patients – Weakness and pain – discharged home – Cough, hallucinations, vomiting: was on hospice, returned to hospice

• Hospitalizations and length of stay: 8 patients – Cholecystectomy – outpatient surgery: 1 day – Syncope – observation patient : 3 days – Pulmonary Emboli: 3 days – Fatigue, nausea: 9 days – New atrial fibrillation, Cardizem drip: 3 days – Malignant pleural effusion, tapped: 10 days – Weakness: 11 days; discharged to Skilled nursing facility – Anemia, dyspnea: 10 days; discharged to home hospice – Sepsis: 13 days; discharged to hospice house

• ICU use: 1 patient – Sepsis, intubated. Patient had been seen inpatient and outpatient prior, very resistant to discussions on code status, advance directives, and goals of care.

Treatment at end-of-life

• Average Number of Days from last chemo : 43.6 days

• Average Number of Days from last chemo or Radiation: 47.16 days

• Average Hospice days: 20.2 days – One patient refused hospice = no hospice days

Patient satisfaction with Complex Illness Support Comparison to benchmarks

CIS Literature All surveyed strongly agreed: Chemo last 14 days 6% 5.6-20% √ The CIS team was respectful and professional Chemo last 30 days 12% 9 - 50% √ I was able to talk about my goals and preferences for future care ED visit 11% 4.57 -47.8% √ The team helped me to feel more comfortable Hospitalization 44% 4 - 92% (Emotionally and with symptom management) ICU use 6% 5.86-15.4% √ The CIS team helped to coordinate my care Hospice admission 94% 47- 59.9% √ I am satisfied with the CIS team Hospice days 20.2 4 -19.7 Acute care death 0 28.6%

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References: • Temel, J., Greer, J., Muzikansky, A., Gallagher, E., Admane, S., Jackson, V., . . . & Reflections Lynch, T. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363(8); 733-742. • ‘No show’ patients are reflective of misperceptions about palliative care, • Stuver, S., McNiff, K., Fraile, B., Odejide, O., Abel, G., Dodek, A., & Jacobson, J. how complexly ill patients are, and late referrals. (2016). Novel data sharing between a comprehensive cancer center and a private payer to better understand care at the End of Life. Journal of Pain and Symptom Management, 52(2); 161-169. • Patients and providers are accepting of and asking for outpatient Complex • Von Roenn, J. & Temel, J. (2011). The integration of palliative care and oncology: Illness Support The evidence. Oncology, 25(13); 1258-1266. • Greer, J., Pirl, W., Jackson, V., Muzikansky, A., Lennes, I., Heist, R., Gallagher, E., & • In this five month project, 56% of patients referred to Complex Illness Temel, J. (2012). Effect of early palliative care on chemotherapy use and end-of-life support died. This affirms the rationale and need for early supportive care care in patients with metastatic non-small-cell lung cancer. Journal of Clinical Oncology, 30(4); 394-400. intervention. • Abramowski, M. & Astarita, P. (2017). Building a palliative care program from the inside out. Oncology Issues, Jan-Febr; 37-46. • Expanding services would enhance patient care and satisfaction, as well as • Murillo, J. & Koeller, J. (2006). Chemotherapy given near the end of life by provide benefit to patients, families, and the healthcare system. community oncologists for advanced non-small cell lung cancer. The Oncologist, 11; 1095-1099. • Nappa, U., Lindqvist, O., Rasmussen, B., & Axelsson, B. (2011). Palliative chemotherapy during the last month of life. Annals of Oncology, 22; 2375-2380.

• Loh, K., Kansagra, A., Shieh, M., Pekow, P., Lindenauer, P., Stefan, M., & Lagu, T. (2017). Predictors of the use of specific critical care therapies in patients with metastatic cancer. JNCCN, 15(1); 22-30. • Magarotto, R., Lunardi, G., Coati, F., Cassandrini, P., Picece, V., Ferrighi, S., Oliosi, L., & Venturini, M. (2011). Reduced use of chemotherapy at the end of life in an integrated-care model of oncology and palliative care. Tumor., 97: 573-577,

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