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

Bereavement Diagnosis of Serous Illness

Death

Hospice

Palliative Care

Life-prolonging Therapy

Example: Traditional Palliative Care Interventions

Bereavement Diagnosis of Serous Illness

Death

Hospice

Palliative Care

Life-prolonging Therapy

1

2

3

Symptom mgmt:

Vomiting, ascites, pain, delirium

Referrals

Psychosocial support

Discharge planning

Equipment

Teaching

Medication

Nursing support

Bath aide

Volunteer

Prognosis

Support

Example: Traditional Palliative Care Interventions

Goals of care

Advanced Directives

Family Meeting

Code Status

Hospice Education

Hospitalization

Bereavement Diagnosis of Serous Illness

Death

Hospice

Palliative Care

Life-prolonging Therapy

1

2

3 4

5

6

7

8

Goals of care

Advanced Directives

Nausea mgmt

Psychosocial Needs

Referrals

Symptoms: pain,

constipation

Bowel obstruction mgmt

Prognostication

Psychosocial Needs:

Legacy Building

Financial

Spiritual

Needs

Family Meeting Code Status

Spiritual Support

Hospice Education

Symptom mgmt:

Vomiting, ascites, pain, delirium

Referrals

Psychosocial support

Discharge planning

Equipment

Teaching

Medication

Nursing support

Bath aide

Volunteer

Prognosis

Support

Example: Upstream Palliative Care Interventions

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

• 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

Tools and Tactics to Promote Great Execution

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)

0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

70.00%

80.00%

90.00%

Outside of hospital death/hospice Hospital death

Initial Palliative Care Contact Outpatient

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