Less Suffering, More Living: Integrated, Behaviorally-Informed Approaches to Adult

and Pediatric Palliative Care

David Nowels, MD, MPHJackie Williams-Reade, Ph.D., LMFT

Barry J. Jacobs, Psy.D.Collaborative Family Healthcare Association 17th Annual Conference

October 15-17, 2015 Portland, Oregon U.S.A.

Session # A1bFriday, October 16, 2015

Faculty Disclosure

The presenters of this session• currently have the following relevant

financial relationships (in any amount) during the past 12 months:

• 20% of Barry Jacobs’ salary is covered by a grant from Independence Blue Cross of Philadelphia for working on the Crozer-IBC Medicare Advantage Super-Utilizer Program

Disclosure of ABIM Service: David Nowels, MD

I am a current member of the Test-Writing Committee on Hospice and Palliative Medicine.

To protect the integrity of certification, ABIM enforces strict confidentiality and ownership of exam content.

As a current member of the Test-Writing Committee on Hospice and Palliative Medicine, I agree to keep exam information confidential.

No exam questions will be disclosed in my presentation.

Learning Objectives

At the conclusion of this session, the participant will be able to:

• Define palliative care as a person-centered, continuous approach to chronic disease management

• List the key components of a PCMH-based palliative care program

• Delineate to goals of a pediatric palliative care program

• Describe the rationale for integrating palliative care into community-based programs for frail elderly, high-utilizing patients

Bibliography• --”Working with the Super-Utilizer Population: The Experience and

Recommendations of Five Pennsylvania Programs,” 2015, available at http://www.aligning4healthpa.org/pdf/High_Utilizer_Report.pdf

• Rich E, Lipson D, Libersky J, et al. Organizing Care for Complex Patients in the Patient-Centered Medical Home. Ann Fam Med 2012;10:60-6

• Bayliss EA, Balasubramianian BA, Gill KM. Perspectives in Primary Care: implementing patient-centered care coordination for individuals with multiple chronic medical conditions. Ann Fam Med 2014;12:500-50

• Murray SA, Boyr K, Sheikh A, et al. Developing primary palliative care. BMJ 2004; 329:1056

Learning Assessment

• A learning assessment is required for CE credit.

• A question and answer period will be conducted at the end of this presentation.

Today’s Talk

• Our fragmented system of caring for the chronically ill

• What is palliative care?• HeathTeamWorks guideline• A primary care approach to palliative care• Pediatric palliative care• Palliative care and population health programs

•One in 5 Americans will be > 65 within 2 decades.•People > 65 are more likely to have multiple chronic illness.

Demographic Imperative

Baby Boomers

Living with Chronic Illness – current situation

Medical care for patients with advanced illness is usually characterized by:

– inadequately treated physical distress – fragmented care systems – poor communication between doctors, patients,

and families – enormous strains on family caregiver and support

systems.

Chronic Illness Management(Current State)

Single patient with multimorbidity

Diabetes

COPD

CKD

What people want during advancing illness

Seamless, person-centered, coordinated care that allows them to live productively and as comfortably as possible.

Barriers to the care people with advanced illness want

• Care delivery systems – siloes, payment mechanisms more important than personal goals, variation geographically

• Healthcare professionals – unprepared, focused on disease management

• Policies – misaligned payment systems and incentives, no best practices

• Healthcare consumers – low health literacy, poor understanding of advanced illness

Primary Care Response - PCMH

• holistically patient centered, • delivery across settings and illness, • focus on accessibility, • enhancing patient safety and delivery quality, and • with coordination from a relational perspective

Proving it’s effectivenessHitting Triple AimEvolving new models – integrating PC and BH as example

Palliative Care• relieves suffering across multiple domains of

the illness experience, • is driven by patient goals and values, • enhances communication and coordination of

care, and • is available at any time in the illness

experience (IOM and WHO)

Look quite similar to PCMH principles

Specialty vs. Primary Palliative Care

• All the benefits cited, identified in specialty palliative care– Another silo– Not available to all people– Used too late to reap maximum benefits

• All clinicians can provide basic elements of palliative care– Need training– Need systematic approaches

A new theory -

Use the PCMH model to deliver primary palliative care in primary care practices.

• What would that look like?• What would it take to make that happen?• What would the outcomes look like?

Integrating Primary Palliative Care in Chronic Illness Management (integrated)

Diabetes

COPD

CKD

Physical symptoms/function

Emotional

Social issues

Spiritual/Existential

problems

concerns

Care Planning

What would be required to systematically

integrate primary level palliative/supportive

services in primary care practice?

Examples from Outside the US

• http://www.goldstandardsframework.org.uk

• http://www.gpscbc.ca/psp-learning/module-overview/end-of-life

• http://www.palliativecare.org.au/Resources/Professionalresources.aspx

Process – adapting practice transformation methods

• Systematically identify population at risk for having supportive care needs - registry

• Screen that population – Palliative Outcome Scale

• Target palliative care elements for improvement – develop outcome measures (pain, depression, ACP)

• Develop specific patient supportive care plans –PEPSI COLA tool – Internal practice resources – coach, rapid cycle QI– External practice resources – education, coach

• Monitor outcome measures – for patients– for practice

Integrating Supportive Care in Primary Care Practice – results of a demonstration project

• Can practice improvement/transformation approaches be used to systematically integrate primary supportive services in primary care practices? YES!

• What are the barriers? All the usual – multiple demands on time and attention. Step-wise implementation.

• What is required by practices to implement? Leadership, interest, time to meet to plan. Revisioning concept of primary palliative care as a process

Integrating Supportive Care in Primary Care Practice – results of

a demonstration project• What are the impacts on practices? Positive

responses by staff. Less time to have conversations than expected. Team processes.

On patients and their loved ones? Positive reactions by patients.On the healthcare system? Increase in advance care planning.

Pediatric Palliative Care (PC)

“The art and science of patient and family-centered care

aimed at attending to suffering, promoting healing and improving quality of life”

~Javier Kane, MD

• Palliative care for children is the active total care of the child’s body, mind and spirit, and also

involves giving support to the family

• Requires a broad multidisciplinary approach that includes the family and makes use of available

community resources (WHO, 2008)

Model of Palliative CareHistorical Current

Curative treatment

Palliativetreatment

D E A T H

Bereavement

Diagnosis

Palliative = “No hope”

4 categories of children who would benefit from PPC

1 – cure is possible, but may fail. Example: cancer2- premature death is likely, but treatment prolongs quantity and quality of life – sickle cell disease3 – progressive conditions w/out curative, treatment is purely palliative, but may extend life : muscular dystrophy4 (largest) – not progressive, but render children vulnerable to life-limiting complications – cerebral palsy

Palliative Care and Population Health Programs

• Some health systems around the country have developed population health programs (e.g., complex disease management, super-utilizer) to better manage sub-populations and to reduce costs

• Incorporate palliative care as strategy to mitigate late-life high utilization and spending

• Requires cultural change within health system

• Transitions program (Dan Hoefer, MD):

• In-home pt and family education

• Evidence-based prognostication

• Caregiver management• Advanced care planning• Over 50% reduction in

ER visits and admissions

Crozer-Independence Blue Cross Medicare Advantage SU Program

• Health system-insurer partnership to lower costs

• Launched January 2014; renewed for 2nd year

• As of 8/15, team saw 20 patients; avg age=80

• Dxs: CHF, COPD, DM, dementia

• Strong emphasis on palliative care; social determinants

Crozer-IBC (cont.)

• 50% reduction in hospital admits

• 80% reduction in OBS• 45% reduction in LOS• Increased pt and family

satisfaction• Probably keeping pts

alive longer—may lead to increased costs eventually

Session Evaluation

Please complete and return theevaluation form to the classroom

monitor before leaving this session.

Thank you!