pediatric palliative care sustaining gains and taking success to a higher level

Collaborative for Palliative Care April 3, 2014

PEDIATRIC PALLIATIVE CARE

SUSTAINING GAINS AND TAKING SUCCESS TO A HIGHER LEVEL

Susan Pinckney, LCSWRDirector of Social Work & Related Services

Alice Olwell, RN , BSN, HNC, REIKI MasterManager of Complementary Care


OBJECTIVESDescribe dynamic sustainable components of a Pediatric Palliative Care Program.

Define and implement key quality initiatives to access program effectiveness and sustainability. Define methods for assessing and fulfilling the ongoing educational needs of staff, families and resident’s within a palliative care framework.


SUNSHINE RESIDENTS

NEWBORN THROUGH 21 Average AGE= 8 years

LOS = 2.98 years (6 wks - 10 years)Palliative Service = 26 Deaths 2009-2013 = 13

Sunshine Children’s Home is a 54-bed facility located 45 minutes north of NYC in Ossining, NY. Our Home specializes in the care and treatment of medically complex children who require post acute, rehabilitative and/or palliative care.

The goal of Sunshine Children’s Home is to create a loving and supportive environment that provides the highest level of pediatric care for children with special needs.

We are committed to treating children with dignity, compassion, and respect within a resident and family-centered approach.


MODELS OF CARE

Palliative Care Consultation Service

Hospice-Based Palliative Care Consult Services

Integrated Palliative Care

Hospice Care Contracts


Sunshine’s TEAMS

Pain Management

School

Management

External Liaisons

Ethics

Child and Family

FaithfulJourneys

VolunteersBehavioral

Health

Nursing

ComplementaryCare

Medicine

Nutrition

Therapeutic Activities

Child and FamilySocial Work

FacilitiesHousekeeping

Rehabilitation Quality of Life


INTEGRATED MODEL OF CARE

Interdisciplinary team approach to planning and care.

Offers care, support and guidance to children and their families affected by a life-threatening or life-limiting illness.

Provides physical, emotional and spiritual services within a holistic and family and resident- centered care framework.


Components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death.

Time of death is often difficult to predict.

Aspects of an integrated palliative care approach may prove beneficial when provided early in the course of a child's illness.

As the disease progresses and curative therapies are no longer effective, palliative treatment will intensify.

Integrated Model of Care

Interventions are designed to reaffirm life by offering the kinds of services that help a child enjoy a life of quality and not hasten or postpone death.


Supporting a Family through Transitions in Palliative Care

From acute

care to chronic

care

Reprioritizing treatment focus

Care of child and family at

the end of life

Family understanding of child’s life, death, and the care

he/she received

Curative Focus

Palliative Focus

Bereavement Support


A standardized multidisciplinary clinical pathway based on three (3) levels of care.

Levels of care are assigned to each child and are driven by the time dimension of the prognosis and increased needs for palliative care interventions.

Levels of service are fluid with changes in the child’s condition and family needs.

Pediatric Palliative Care Program

The goal is to deliver required care “upstream” (i.e., from Level 1 to Level III) in addition to end-of-life care.


Level IProgression of Illness

Level IILife-Limiting Illness

Level IIIEnd-of-Life Care

Chronic illness with progression of symptoms and loss of function and/ or physical decline.

Examples of disease process may include: HIV/AIDS; cancer; genetic disorders; solid tumors; progressive myopathies; metabolic disorders; severe TBI, sev ere neurological impairment.

Life-limiting or terminal illness; anticipated death within 6 months.

Examples may include progression of the diseases in Level I; multiple congenital anomalies; certain chromosomal anomalies.

Anticipated death is imminent, within 2 weeks. End stage illness; Progression of diseases in Level II.

Levels of Palliative Care


Structure of Palliative ProgramCOMMITTEE

• Leadership , clinicians and front line staff• Provides oversight from a quality lens, programmatic direction, provides resources to team• Meets Quarterly

CORE Team• Directors (Medicine, Nursing, Social Work, Complementary Care, Therapeutic Activities/

Quality of Life)• “Work Group”- implements ‘actionable’ items proposed by Committee• Membership can expand based on initiatives • Meets every 3 weeks

CARE PLANNING Team • Interdisciplinary• Identifies residents for services, meets with family to identify goals of care• Direct service providers• Ongoing collaborations

ETHICS COMMITTEE• Medical Director, Administrator, Department Directors, Nurse,

Rehab Therapist, Spiritual Advisor• Ad hoc /issue-driven meetings


PROGRAM COMPONENTS

Complementary Care/Pain ManagementReiki, Aromatherapy, Massage Therapy, Therapeutic Touch, Expressive Arts

Faithful Journey’sSpiritual Support and assistance with any specific religious and/or cultural requests

End of Life PreparationsPeaceful Dying Plan, Gentle Transitions Brochure, Wish Fulfillment,

Environmental Modifications

Post Death RitualsKeepsake Gift to You Program, Family Memory Bags, Lying of Quilt,

Candle Lightening, Reflections Gatherings, Annual Memorial Services


Complementary Care Program

Planned interventions designed to improve the Quality of Life.

Combines the body, mind and spirit to treat and prevent illness, aid recovery, promote health, manage pain and reduce stress.

Sunshine complements the traditional treatment plan with approaches such as guided imagery, music therapy, Therapeutic Touch, Reiki, pet therapy, relaxation, acupressure, and massage modalities.

Focus is on maximizing a child’s comfort.


Complementary Care Program

Provides an environment and services that promote the greatest healing potential for children, families and staff

Provides focused time for comfort and relaxation.

Often includes physical touch via massage, holding, rocking or stroking.

Usually involves a peaceful environment with gentle lighting and soothing music or sounds.

BENEFITS Reduction of

anxiety Reduction of

stress Reduction of pain

Promotion of relaxation

Promotion of a sense of well-

being


Complementary Care Modalities

Reiki Therapeutic Touch

Aromatherapy Massage

Music Therapy Harpist


Complementary Care Programs

Sunrise Salutations

Peaceful Pause

Happy Feet

“Zen Zone”


Pain Management in Pediatrics

Comfort is ALWAYS our primary goalPain is what the child says it isPain meds around the clock vs PRNPain Care Plans have to include all sources of pain Dependence vs. Addiction Morphine and Methadone Healing Environment


Pain Management Assessment

Scoring0 1 2

Face No particular expression or smile Occasional grimace or frown, withdrawn, disinterested

Frequent to constant quivering chin, clenched jaw

Legs Normal position or relaxed Uneasy, restless, tense Kicking, or legs draw up

Activity Lying quietly, normal position, moves easily

Squirming, shifting back and forth, tense

Arched, rigid or jerking

Cry No cry (awake or asleep) Moans or whimpers; occasional complaint

Crying steadily, screams or sobs, frequent complaints

Consolability Content, relaxed Reassured by occasional touching, hugging or being talked

Difficult to console or comfort

Each of the five categories (F) Face; (L) Legs; (A) Activity; (C) Cry; (C) Consolability is scored from 0-2 which results in a total score between zero and ten. A score greater than 0 may indicate a need for intervention.

FLACC: Children < 3 years-old or non-communicative children


PAIN MANAGEMENT INTERVENTIONS

Farrell Bags

Acubands

“Sweet–Ease”

LMX4

Insuflon catheters

Non-pharmaceutical interventions


FAITHFUL JOURNEYS

EMBRACING HOPE

Addressing the emotional & spiritual needs of residents and their families through the coordination of faith-based practices & traditions.

Needs identified through individualized SPIRITUAL ASSESSMENTS

ESTABLISHING Community Partnerships

Maintain or create Connections to Community

Positive Coping Strategies

FINDING MEANING


End of Life Preparations

• Peaceful Dying Plan

• Gentle Transitions

• Keepsake Gift to You

• Wish fulfillment (internal and external)

• Environmental modifications


End of Life Preparation

DEVELOPING A PEACEFUL DYING PLAN

THE GOAL IS TO PREVENT/RELIEVE SUFFERING, AND SUPPORT THE BEST QUALITY OF LIFE FOR CHILDREN AND THEIR FAMILIES

RECOGNIZES EACH FAMILY SITUATION AS BEING UNIQUE

HELPS FAMILIES IDENTIFY THINGS THEY CAN CONTROL ABOUT THEIR CHILD’S CARE

FOCUSES ON THE UNIQUE NEEDS, HOPES, BELIEFS OF THE FAMILY

ALLOWS FOR A THOUGHTFUL, NON-CRISES OPPORTUNITY FOR PLANNING

Making Memories That Last A Lifetime


Post Death Rituals

Candle Memory Quilt

My Keepsake Box Cards & Family Memory Bag


Annual Memorial

Memory Quilt


Use PDSA : program continuously evolving

Respect for People- Palliative Care Team; family-centered care

Professional Standards – with assigned roles, utilizing a clinical pathway, opportunities for training & certifications

Seek Feedback & Manage-By-Fact : stakeholders are partners in care; listen to everyone’s “voice”; use DATA to initiate change

SUNSHINE’S PILLARS OF QUALITY


QUALITY

Staff Reflections

Chart Reviews

Satisfaction Surveys

Quality Improvement Initiatives


PROJECT ONE

COMPREHENSIVE CARE PLANNING TEAMAdvance Care Planning Discussions

Improve team dynamics around initiating ACP with families

Update Palliative Care brochure to include information on ACP, Goals of Care Discussions and A Natural Death

Develop a checklist for CCPT to be used as a guideline for team discussions and decision-making


PROJECT ONE


COMFORT CARE ROUNDS

Monthly interdisciplinary rounds to review residents on Palliative and Pain service • 24 children on currently on roster• 8-10 children discussed each month

PROPOSED CHANGE

Shift from a “medically driven/care plan redundant process” → “bio-psycho-social- spiritual review”

Focus on Quality of Life domains

Increase participation of all disciplines → increase accessibility

Create actionable plans with accountability for follow-up

PROJECT TWO


Teams are not static but fluid, do not magically gel, go through stages of development and patterns, aspects of team behavior may emerge, resolve then re-occur

(staffing changes can have big impact on small teams)

Key to empowering team membership is to identify and support champions regardless of degree/discipline or department

(frontline staff (C.N.A., food service, teachers) are our experts)

Team forums must provide for time, space & support for meaningful comprehensive information exchange

(identify barriers and creatively remove them)

IMPORTANT CONSIDERATIONS

http://www.amazon.com/Welcome-Butterflies-Whimsical-Garden-Flag/dp/B00AY3ZUM6/ref=sr_1_32?s=lawn-garden&ie=UTF8&qid=1375302658&sr=1-32&keywords=welcome+garden+flag+butterfly


COMFORT CARE ROUNDS TOOLS:

Written guidelines for team discussions

Questionnaire to obtain data on level of participation and perceptions re quality of discussions

ROLL-OUT:

1- Palliative Committee : endorsement (March)

2- CORE Team : refinement

3- Leadership : buy-in

4- Department Meetings: education

5- Tools implemented at Rounds (April) : roll-out

PROJECT TWO


Comfort Rounds Questionnaire Gathering Data

DEPARTMENT___________________________ DATE _________________

1 --------------------------2------------------------------3---------------------------4----------------------------------5 Disagree Slightly disagree Somewhat Agree Agree Strongly Agree

I was comfortable sharing my thoughts and feeling during Comfort Rounds.

I have increased understanding of the residents and families social and emotional needs.

My ability to respond to residents and families needs has been increased.

I better understand the roles and contributions of colleagues from different disciplines.

I will share new information with my colleague who did not participate in today’s Comfort Rounds.

My supervisor encourages me to participate in Comfort Rounds.

COMMENTS


Comfort Rounds Initial Data

Interdisciplinary Team:Medicine , Nursing /CNA, Respiratory, Rehab , Social Work , Nutrition , Therapeutic Activities, Education


PROJECT THREENoise Awareness Campaign (NAC)OBJECTIVE: To create a more optimal healing environment through noise reduction to a more acceptable level.”

RECORDED SOUND LEVELS__1st___ QUARTER

LOCATION/PROGRAM

1 2 3 4 5 6 7 8 9 10 11 12

Day Room/Sunrise

Salutation

52 42 50 55 52 58 52 55 50 53 56 53

Lobby/Peaceful Pause

54 58 78 drilling 60 85 drilling 50 45 46 56 50 52 48

Garden Café/ Afternoon TA

58 65 62 58 72blower

61 58 52 56 71 53 62

EI Playroom/Infant Group

None[flu]

58 44 59 54 58 63 53 62 65 NoneIsolation

55

Evening Program 72 61 59 57 58 61 58 52 60 64 58 54


PROJECT THREENoise Awareness Campaign (NAC)OUTCOMES:

RAISED AWARENESS

INCREASED SENSITIVITIES

FUN ≠ LOUD

NEXT STEPS:


STAFF DEVELOPMENT

CONSIDERATIONS FOR TRAINING

• Implementation of training concepts requires support from Administration

• Leadership needs to fully embrace the goals and methods of the training

• Involve staff members in the planning and implementation of training

• Methods should be consistent with the mission and philosophy of the organization

• Accessible for frequent training and reinforcement

• Vary presentation methods to keep people interested and excited.

PROMOTING A LEARNING CULTURE THROUGH EDUCATION INFORMIATION SHARING AND COMMUNICATION


I. New Employee Orientation

• Curriculum created/facilitated by DSW and Complementary Care RN

Use of storytelling as teaching method to communicate the impact employees efforts on a human level

• Initiated in April 2013

• 52 new employees have attended the training • Revised in July 2013 with emphasis on role of Interdisciplinary Team



PALLIATIVE CARE PROGRAM ORIENTATION OUTLINE

1. Introduction to Facilitators/Roles and Responsibilities 2. Brief Descriptions of Program Components:

Palliative Committee Palliative Core Group Palliative Pathway Three Levels Palliative Care Plans MOLST Peaceful Dying Plan NILMDTS Gentle Transitions Brochure Shabbas Customs at end of life Comfort Rounds “Reflections” Annual Memorial Memory Keepsake Box or Album


II. Interdisciplinary Team Retreat/Training Administrative support obtained

• Off-site, half-day, transportation, catered• Sessions scheduled for May 2014• 10-12 participants/session• Didactic, experiential, role play, case study & video support

Organized development team to create and implement curriculum

Medicine (NP) Nursing Social Work

Quality of Life

Therapeutic Activities Parent perspective



CURRICULUM TOPICS Pathway Review

interventions, outcomes and measurements

Advanced Care Planning Discussions, Partnerships with Familiescommunication

Interdisciplinary Team forming, sustaining, maintaining team health

Compassion in Professional Care therapeutic boundaries

Promoting Maximum Quality of Lifepain managementcustoms, religions

child-specific programming

Care from a Parents Perspective

Care of Self


Inviting and inclusive team membership

Inter-dependency is valued

Clear objectives and shared goals

Consistent channels for candid and complete communication

Roles and responsibilities are understood

Flexible hierarchy is allowed with focus on the knowledge & expertise of each team member

Pooling of training, skills, talents is norm in providing comprehensive “whole person approach to care”

Goals of Care are in tune with the child and families needs and preferences

SUCCESSFUL OUTCOMES FOR THE TEAM APPROACH TO CARE


We wish to thank….

Our special kids for teaching us the right combination of love, joy, patience and courage

Our families for modeling the ideal and teaching us “how to get it right”

Our staff for providing “care from the heart” , each and every day


For more information about

Address 15 Spring Valley Road Ossining, NY 10562

Phone Number 914.333.7000

Website www.sunshinechildrenshome.org

pediatric palliative care sustaining gains and taking success to a higher level

Documents

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palliative care framework

care heshe

palliative carefrom

palliative treatment

life of quality

familycentered approach

spiritual services