Lessons from the Trenches: Transforming the Experience of People with Advanced Illness Lori Ann Attivissimo, MD, FACP, FAAHPM, HMDC Senior Medical Director of Hospice Care Network Medical Director for Post Acute Services James T. D Olimpio, M.D., FACP, FAAHPM Director of Supportive and Palliative Oncology Services of Monter Cancer Center North Shore Cancer Institute
Objectives To understand how a home based palliative care program can partner with an oncology practice to collaborate and enhance a patients quality of life, optimize function, help with decision making and provide opportunities to have goals of care identified and met To understand the value of transferability of similar projects to other advanced illnesses to a Health System Describe challenges to sustain home based program collaborative
Goal Create an internal organizational process within a large not for profit healthcare system to transition patients from community based palliative care to hospice care
Steps 1)Answer the global question 2)Develop a Team 3)Create an aim 4)Create Goals and Desired Outcomes
Global Question How do we transform our Health Care Systems to meet the needs of patients/their families at the End of Life?
Our current Health System: Poorly designed to meet patient/family needs at the End of Life Provides fragmented care Shies away from the meaningful discussions and conversations Patient/Family wishes are not known or cannot be honored
First Steps: Develop internal teammembers Sponsor Day to day lead Clinical champions Improvement Advisor Day to day support
Transition to Supportive Care/Hospice Programs ROLE Sponsor Day to day lead Clinical champion Improvement Advisor Day to day Support Team Member Nan Toelstedt Nan Toelstedt Dr. Lori Ann Attivissimo Dr. James D Olimpio Maureen Hinkelman Laurie Mazziotti Carol Lamont Ann Mark Rizzardi Martine Resta
The Key Value System The belief that everyone should experience end of life in a way that is driven by patient s goals and wishes, provides maximum symptom management to ensure comfort and allows patients to remain in their home setting. AIM Hospice Care Network and Monter Center collaboration to provide care and services which support patients with advanced cancer by managing their symptoms and ultimately facilitating earlier transitions to quality end of life care.
WHY? Establish the macro economic perspective to ground the internal team in the larger national challenge 70 percent of Americans say they prefer to die at home. 70 percent die in a hospital, nursing home, or long-term care facility. 94 percent of Americans think it s important to have conversations related to end of life wishes. Only 27 percent have discussed what they want when it comes to their end-oflife care. (IHI, The Conversation Project, Having the Conversation: Basis Skills for Having Conversations About End of Life) Center for Disease Control and Prevention
Health Care Costs Cancer in the US is 2 nd most costly medical condition Annual direct costs are projected to rise from $104 billion in 2006 to >$173 billion in 2020 Cancer related costs incurred in last year of life are the highest 5% to 6% of beneficiaries who died each year consumed 27% to 30% of the annual Medical payments (mean cost of $13,316 per beneficiary death per year) Most of the costs were the result of life sustaining care, with 78% of costs accrued from acute care in final 30 days of life Chastek, Benjamin Harley, Carolyn Kallich, Joel, Newcomer, Lee Paoli, Carly Teitelbaum, April. Health Care Costs for Patients With cancer at the End of Life. Journal of Oncology Practice 3 July n.pag. Web. 11 Sept. 2015.
Earlier palliative care vs. Oncology alone Increase in quality of life Decrease in major depression Fewer patients received therapies such as chemotherapy in the last 14 days of life Median Survival rate was increased Temel et al. Early Palliative Care for patient with non small cell lung cancer NEJM2010;363:733 42 Web. 8 Sept. 2015
Improving the patient experience of care Improving the health of populations Reducing the per capita cost of health care IHI Triple Aim Institute for Healthcare Improvement, 2015.Web.11Sept.2015.
Hospice Families Feedback The question on the survey reads, In your opinion, was the patient referred to hospice too early, at the right time, or too late during the course of his/her final illness? This is a collection of responses by family members who answered too late to the question. Doctor refused to sign off on hospice thereby prolonging my brother s and my suffering Due to every MD looking at the situation from his/her own perspective, he suffered longer than necessary A referral to hospice would have evaluated his needs in time to eliminate a call to 911 It is sad that the family is expected to handle health situations that they know nothing about; something needs to be done about it I think he received chemo for too long Would probably have been comfortable for a longer time if referred earlier He was stage 4; the doctors in the hospital were evasive. All the families need is the TRUTH When I asked the primary MD about palliative care, he said she was not there yet We as a family knew he was dying at least 2 to 3 weeks prior. His doctors should have been more forthcoming and suggested hospice instead of running more and more tests in the hospital Hospital gave us false hope about recovery by recommending procedure days before death *Hospice Care Network used the family s perception of care which is measured by the Family Evaluation of Hospice Care (FEHC) that is mailed out three months after the patient s death. This is a national survey conducted by an independent agency and monitored by the National Hospice and Palliative Care Organization (NHPCO).
Finally: Goals and Desired Outcomes Start the conversion earlier Increase referrals and admissions to the Supportive Care Program from the Monter Center to improve transitions of care Increase the length of stay on Hospice Care to maximize quality of life Help assist patient/family to experience end of life in way which meets their values/goals Enable patients to die in their place of preference (home or at an inpatient hospice unit)
Developing an Effective Program Design: Key Elements to Success Target: Advanced cancer population Partnerships: A hospice and palliative care program partnered with a large suburban cancer center Joint Establishment of Criteria for Admission into the Supportive Care program Both teams work to create ongoing process map to manage criteria.
Criteria for Supportive Care Questions: 2 nd Line Chemo Yes No Would you be surprised if patient died within 6 months Yes No If Yes to both questions, please contact Miracle Foundation
Supportive Care Referral Process
Educational Development In-serviced Hospice staff on Advanced Illness Collaborative and the Supportive Care Program Provided education to Monter Center-Medical Oncologists/Fellows, Treatment Room RNs, Faculty RNs, and Social Workers Onsite presence of the HCN palliative RN and Hospice Medical Director Monter Center added a Palliative/Hospice element to their new EHR Hospice Care Network created a new goals of care element within their EHR
Developing a Process What are the Benefits of the Program? Contact within 24 hours after referral and receive weekly RN visit. Communication/Coordination of care with Medical Oncologist 24 hour/7 days per week RN telephone support and emergency nursing visits NP/MD visit upon request by Medical Oncologist Oxygen provided for patients who are not eligible under Medicare at no cost to the patient
Supportive Care Referrals 131 Admitted to Supportive Care 165 Assessed for Program 29 Directly Admitted to Hospice 5 were Assessed and Refused Program 192 Referrals to Supportive Care 1Hold 27 Not Assessed for Program 17 Refused Program Before Assessment 5 Died before Assessment 4 Were Ineligible for the Program
Supportive Care Patients 14 Remain on Supportive Care 21 Died on Supportive Care 131 Admitted to Supportive Care 12 were Discharged from the Program 85 Transitioned to Hospice
Hospice Data 8 Remain on Hospice 113 Hospice Patients (85 Transitioned + 29 Direct Admits) 3 was Discharged from Hospice 53 Died at Home 102 Died on Hospice 49 Died at Inpatient Hospice Unit 0 Died in the Hospital
How are we doing? Nationally the hospice median length of stay is 13 days The New York State median length of stay is 11 days Hospice Care Network s median length of stay 12.6 days Patients that transitioned from Supportive Program to Hospice median length of stay 14 days Hospice Utilization: Paid Claims Period: Jan 15 Jun 15 NGS and National Utilization. PowerPoint Presentation
Supportive Care Driver Diagram
Key Challenges Neither palliative care nor hospice were well understood by either the public or healthcare providers; Very late referrals to palliative and hospice care Culture of medicine and past practices Healthcare professionals, patients and families feel like electing to go on the program is giving up hope. Time constraints Difficulties with having the conversations about patient/family wishes Consistent documentation regarding goals of care
Key Improvements End of life conversations are happening earlier in the course of the disease Incorporation of Palliative Care into treatment sooner helps with both decision making and transitions of care Both organizations experiencing an increased length of stay Patients and families are experiencing continuity and coordination of care Maximization of quality of life Symptom management for patients is improving Patients preferences to die at home are being both honored and met
Transferability Replication of similar models for other chronic advanced illnesses across different sites Hospitals Operationalizing of the program as it relates to Partnerships Collaboration Education Scaling Staff Reimbursement
Sustainability Traditional Medicare fee for service alone is not feasible Philanthropy Grant Funding Additional partnerships throughout the NS LIJ Health System Other financial partnerships
What should medicine do when it can t save should medicine do when it can t save your life? Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come and to escape a warehoused oblivion that few really want. Atul Gawande (The New Yorker)
Questions?