Changing the Face of Palliative Care in Oncology Practice Karin Porter-Williamson MD Associate Professor of Medicine Medical Director Palliative Care Services KU Hospital Amy Velasquez RN BSN OCN Allen J Block Outpatient Palliative Care Program University of Kansas Cancer Center
Objectives Understand the definition and scope of Palliative Care as a standard element of quality medical care for seriously ill patients/families Understand barriers to execution in clinical settings Gain understanding of tools & tactics leading to successful execution Explore operational features for Palliative Care in health care systems
Brief Background What is Palliative Care? Core Concepts Pain and symptom management Patient/family centered care where plan is derived from marrying of medical information and pt/family values Understanding of interdisciplinary teamwork Understanding systems of care across the continuum for patients who are facing serious illness Who does Palliative Care primary, secondary, tertiary What is the population of people for whom the concepts of Palliative Care are important People who are obviously dying People who are at risk of dying in the coming months to few years Anyone living with serious progressive illness
So let s not even use the words Palliative Care The core elements are in essence just GOOD MEDICAL CARE Part of what every provider should do for every patient/family facing serious illness High % of patients say they want to talk about their treatment preferences, low % actually do Waiting on the doctor to bring it up Doctor not bringing it up No one wants to talk about it too early What people say they want at end of life What actually happens
Imperative to move palliative care upstream 50% of all deaths annually in the United States happen in the hospital 75-90% of these after a decision to withhold or remove some form of artificial life support In repeated studies, people report that at end of life they would prefer: To not be in hospital To not be in pain or discomfort To not be a burden on loved ones To not be sustained artificially
Imperative to move palliative care upstream For success, patients & families must: Understand their condition and treatment options Have time to ask questions & plan based on values Have time for hard information to sink in with out feeling abandoned by providers Very hard for primary Oncology and Palliative Care providers to pull this off in the midst of crisis in the hospital setting
Example: Traditional Palliative Care Interventions Life-prolonging Therapy Palliative Care Hospice Diagnosis of Serous Illness Death Bereavement
Example: Traditional Palliative Care Interventions Life-prolonging Therapy Family Meeting Goals of care Advanced Directives Code Status Hospice Education Palliative Care 1 2 Hospice Equipment Teaching Medication Nursing support Bath aide Volunteer Prognosis Support 3 Diagnosis of Serous Illness Hospitalization Death Bereavement Discharge planning Psychosocial support Referrals Symptom mgmt: Vomiting, ascites, pain, delirium
Example: Upstream Palliative Care Interventions Advanced Directives Goals of care 1 Diagnosis of Serous Illness Symptoms: pain, constipation Life-prolonging Therapy 2 3 4 Prognostication Hospice Education Code Status Family Meeting Spiritual Support 5 Palliative Care Bowel obstruction mgmt Spiritual Needs Nausea mgmt Referrals Psychosocial Needs: Legacy Building Psychosocial Needs Financial 6 7 Hospice Death Referrals Symptom mgmt: Vomiting, ascites, pain, delirium Equipment Teaching Medication Nursing support Bath aide Volunteer Prognosis Support 8 Bereavement Discharge planning Psychosocial support
Tools and Tactics to Promote Great Execution Teaching/Training for successful interpersonal and intra-professional communication Empowerment and education of all team members: ELNEC training Palliative Care Needs Identification Tool Shared understanding between Onc & Pall Care about treatment planning & use of the Palliative Care partners Standardized triggers for Palliative Care involvement
Tools and Tactics to Promote Great Execution Savvy Integration of Palliative Care into the Interdisciplinary Oncology team Identify as partners all the way along Linked visits when Pall care is new Physical space planning- Pall Care physically embedded with Primary provider for new patients Close communication with primary, that pt/family are aware of, shows teamwork Integration earlier in course at defined times Active treatment ongoing MUST be okay Integration for symptom management and education LOWER stress than when PC introduced at time of crisis
What s the Bottom Line? Need to do it to provide the highest quality care for our patients Highly likely to impact the bottom line downstream: Avoidance of terminal hospitalization, terminal ICU stay and those high associated costs Increase Hospice length of stay? Impact offering of late line chemo when not thought to be beneficial Have Palliative Care to offer, filling need to offer something Improve patient, family satisfaction though dealing with advanced illness Data showing that outpatient Palliative Care improves symptom management, quality of life, satisfaction, Reduces ED visits in last 3 months of life, and for NSCLCA, may prolong life by 2 months!
KU Blood and Marrow Transplant Intervention Objectives: Provide Palliative Care support and education for nursing staff, patients & family members on an outpatient basis through ELNEC training & navigation Increase Palliative Care physician referrals from the Blood and Marrow Transplant program Impact use of hospice and site of death among the Blood and Marrow Transplant program patients
Palliative Care Intervention: ELNEC Five providers (4 nurses, 1 MD) certified as End Of Life Care Nursing Education Consortium Trainers Formed Palliative Care ELNEC leadership team January, 2012. 2 day Train the Trainer ELNEC seminars 44 ELNEC champions across Cancer Center/ hospital 1 day Core ELNEC training 73 staff nurses, 6 APRN s, 8 nursing leaders, 13 SW, chaplains and educators trained 17 participants from across the state of Kansas
Intervention: Add Palliative Care Physicians into BMT team workflow January 2012 Two Palliative Care MD clinic sessions embedded into BMT clinic workflow Palliative Care working alongside the BMT team. Administrative Integration ELNEC trainer/bmt nurse Amy Velasquez charged with Coordination of referral Empowering providers to identify Palliative Care patient needs The bedside nurse now has a contact to help facilitate a conversation about palliative care with the primary oncologist.
Palliative Care Intervention: Navigation! Dedicated Nurse Navigator Amy Velasquez Started working in earnest October 2012, formalized role January 2013 Leads Palliative Care Education across cancer center Leads patients, families, providers through use of upstream Palliative Care Works with Pall Care docs to help patients, families, providers navigate changes in illness trajectory, changes in goals, changes in community support Triages new patients and anticipates patients needs Visible throughout the Cancer Center, easily reached via email, pager and or phone
Change Agent Amy Velasquez: A point person for the Cancer Center It is the bedside nurse that is the Champion They identify the patients needs due to many hours of care in the clinic They are the advocate for early identification The nurses at the bedside are the eyes and ears for the clinic
Impact on Palliative Care Referrals Need to add graph with pall care volumes over time here, from Jan 2012 to now Sept 2012 induction of OP Palliative Care in Medical Oncology Full-time Palliative Care Nurse Navigator Jan 2013 June 2013: Decrease in consults due to five blocked days in the palliative care clinic
Impact on use of hospice and site of death From 2011-2012 The Blood and Marrow Transplant Program physician encounters increased by 22% Site of death
Increasing % of BMT patients who die are seen by Palliative Care Comparison of deaths from 2011-2012 that occurred with a palliative consult Results reveal in 2012 more deaths had a palliative care consult
Establishing relationship upstream impacts site of death (home on hospice vs. in hospital) 90.00% Initial Palliative Care Contact Outpatient 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Outside of hospital death/hospice Hospital death
Operationalizing Palliative Care Delivery Team: Core unit of physician, nurse, social worker attacking the issues from all angles Dedicated subspecialty team Specialist nurse as team lead working with primary doc, bedside nurse, social worker, chaplain Resources for building Palliative Care services: www.capc.org
Operationalizing Palliative Care Delivery Hospital/Clinic/Community: Need mechanisms to identify seriously ill patients in the system so that goals/prognosis are identified and discussed Need training in bedside providers in the core elements of Palliative Care delivery ELNEC (End of Life Nursing Education Curriculum) www.elnec.org Need community level tools that foster goals based care across the continuum TPOPP (Transportable Physicians Orders for Patient Preferences) www.polst.org, www.centerforpracticalbioethics.org