PALLIATIVE CARE: MEASURES AND OUTCOMES FOR PROGRAMS, INSTITUTIONS… AND THE DPC

PALLIATIVE CARE: MEASURES AND OUTCOMES FOR PROGRAMS, INSTITUTIONS… AND THE DPC

Jeff Myers MD, CCFP, MSEdW. Gifford-Jones Professorship in Pain and Palliative CareHead and Associate Professor - Division of Palliative Care, Department of Family and Community MedicineFaculty of Medicine, University of Toronto

DPC Grand Rounds Sept 6, 2012

MY ONE OBJECTIVE…

• Not my intention to represent myself as having a clear understanding of how performance measures, outcomes and quality indicators can and should be used by clinicians, palliative care teams, health care institutions and academic divisions

• My objective is to make these concepts relatable and stimulate thought as to how they might apply in our clinical and academic settings

Who are we?What do we do?Why do we matter?Where are we going?How will we get there?What can each of us do?

From “State of the Division” June 2012

HOW WILL WE GET THERE?


Our initial strategy is to BUILD CAPACITY through…

INTEGRATION EDUCATIONCOMMUNITY BUILDING

Who are we?What do we do?Why do we matter?Where are we going?How will we get there?What can each of us do?How will we know we are “there”?

DIVISION OF PALLIATIVE CARE

HOW WILL WE KNOW WE ARE “THERE”?

How will we know we have effectively… INTEGRATED? EDUCATED? BUILT A COMMUNITY?


• Intuitively, anecdotally and through formal processes the sense is integration, education and building community are important

• If each is in fact important, how will we KNOW if or when we have been effective and something is different?

• “What is improved because of the DPC?”


It’s kind of like the field of palliative care…• Intuitively, anecdotally and through formal

processes we became aware of its importance• Only recently however has effectiveness been

demonstrated• This required the elements (i.e. measures and

outcomes) comprising “effective” to be defined and studied via rigorous design


It’s kind of like the field of palliative care…• I imagine each of us having been in the

position of feeling the need to defend the merit or purpose or role for the field

• I imagine each of us believe it was worth the arduous process necessary to demonstrate effectiveness for the field

• As a result, the field is becoming increasingly more visible, credible, valued and essential




• Define “effective” (has not been done for a DPC)• Define “something”


• We have the opportunity to define both “effective” and “something” for our context

• Much like direct patient care, it is important to demonstrate our effectiveness as a Division

• Measures and Outcomes are the tools to help us get “there”

• “There” is even greater visibility, credibility, sense of being valued and considered essential


MEASURING PERFORMANCE

• Measuring performance…why the aversion?• We do this all the time clinically…• eg. HgBA1C - a measure of effectiveness for

a diabetes management plan • Dependent on executing a plan that has

been tailored to an individual and incorporates the elements of personality characteristics, habits and abilities

• Measuring performance…why the aversion?• We do this all the time clinically…• eg. a patient’s performance status • Routinely measuring PS generates data

often essential to both effectively provide care and inform decision-making processes• qualification for services, treatment, clinical trials• survival estimation


These principles and elements combine to create a framework that can be applied to different contexts linking directly or indirectly to patient care eg diabetes care

tailored to an individual = STRUCTUREexecution of a plan = PROCESSHgbA1C = OUTCOME“The team spent enough time with me” = THE PERSON’S EXPERIENCE


Another eg of a context is this presentation:• STRUCTURE = ppt, projector, room, video• PROCESS = ensuring relevant info, order• OUTCOME = # of people who view it• PERSON’S EXPERIENCE = quan/qual evals

My objective is to make these concepts relatable and stimulate thought as to how they

might apply in our clinical and academic work


STRUCTURE MEASURES• The right facilities, personnel, equipment and

supplies to provide excellent “X” eg. inpt consult service; small group teaching

PROCESS MEASURES• The elements that outline the right thing that needs

to be done at the right time for “X”eg. referral process for consult service; the tasks that must be completed during small group session (both learners and teachers)

HOW IS PERFORMANCE MEASURED?

OUTCOME MEASURES• Are an indication of the effect on “X”

eg. pts symptom severity ratings; the learner’s ability to perform an abdominal exam

THE PERSON’S EXPERIENCE• Perspective on and rating by the person for

whom “X” has the greatest meaning and/or impact eg. “I find it difficult to ask for BTs”; “Dr. C was

helpful with practical tips about an abdo exam”

HOW IS PERFORMANCE MEASURED?

WHO MEASURES PERFORMANCE?

• Performance is expected to be measured by... individuals, clinical teams, research teams, teaching teams, institutions, organizations, departments, faculties etc.

• We are part of the transformation currently occurring in health care whereby measures are becoming the foundation for healthcare reform

WHY MEASURE PERFORMANCE?

Because someone or something in a position of authority* tells us we must

ORBecause we believe palliative care to

be important, can use measures and outcomes to carve out our own

contribution to the field and become even more visible, credible, valued and essential

Choose to respond from one of two perspectives:

*eg. Accreditation Canada, LHIN

ACCREDITATION CANADA

• External peer review process to assess and improve services & care provided to patients

• Assessments are based on standards of excellence

• Decides which palliative care outcomes are important and expects them to be measured

ACCREDITATION CANADA: KEY PALLIATIVE CARE MEASURES

• Development of a collaborative care plan• Immediate Access to staff (in person)• Immediate Access to staff (by telephone)• Immediate Access by Care Consultants (in person)• Immediate Access by Care Consultants (by telephone)• Management of Pain: ESAS on Admission• Management of Pain: Pain Burden on Admission • Documentation of Client and Family Service Goals

These aren’t so bad…

1. % of pts with 24/7 access to specialized pall care services - in person and by telephone

2. % of pts with documented care goals3. An IP pall care team follows a formal

process to regularly evaluate its functioning, identify priorities for action and make improvements: Includes a review of its services, processes and outcomes

These aren’t so bad either!!

ACCREDITATION CANADA: KEY PALLIATIVE CARE MEASURES

“Declaration of Partnership” identifies four measures LHINs are to address:• Decrease in caregiver burden• Increase in % of deaths that occur in

preferred setting• Increase in quality of life preceding death and

quality of dying experience• Decrease in avoidable hospitalizations

LHIN: PALLIATIVE CARE MANDATE FROM THE MINISTRY OF HEALTH

Lofty…but again, not so bad!!!

WHY MEASURE PERFORMANCE?

• Preparing for this presentation has expanded my view and understanding of the potential role for performance measures

• Because we believe the academic contribution of DPC members to be important, we will begin using measures and outcomes as a strategy to ensure the effectiveness and impact of DPC’s contribution is clear

• A palliative care team might also use this strategy to improve the # of “right patient’s & families” accessing specialized palliative care at the “right time”

• QUALITY of care is defined as the extent to which healthcare services for individuals and populations increase the likelihood of desired outcomes and are consistent with current professional knowledge

• QUALITY INDICATOR (QI) is a measure designed to lead to improved quality of care

• Avoidance was based purely on the reactions and expressions when mentioning the topic for today

OK…I MAY HAVE BEEN AVOIDING THE WORD…BUT IT’S TIME

• A quality indicator is the same thing as a measure• A system of QIs should assess care in a population

and compare against accepted standards • For palliative care, QI measures must be accepted

by relevant stakeholders as truly measuring an important element of quality healthcare

• Takes us back to the importance of being vigilant in our efforts to demonstrate the “value” of palliative care and begins with determining the necessary data elements and collect them!!!

QUALITY INDICATORS

• Operational:• Does our program have the elements necessary to

effectively provide quality palliative care?• What should be measured to demonstrate our program

has these elements?• Clinical:

• Are we improving the clinical care of patients?• Experiential:

• Are we meeting the needs of pts/families/colleagues?• Financial:

• Does the work of our team save money for the institution?• Academic

• What do learners learn and retain?

QUALITY INDICATORS: DATA DOMAINS

PALLIATIVE CARE: THE QUALITY CHALLENGE

• Reminder: We are part of the transformation currently occurring in health care whereby quality indicators and measures are becoming the foundation for healthcare reform

• Palliative care cannot afford to ignore quality• Specialized palliative care has been directly linked to

improvements in patient outcomes• However, current evidence is insufficient to link structures

and processes to patient care outcomes for a number of key palliative care domains:• Quality of life, communication, family burden, spiritual well being,

bereavement, continuity, symptoms

• We now know that for certain pt populations who receive specialized palliative care, pts have better outcomes eg QoL, symptom management, survival

• Specific structures within specialized palliative care and the necessary processes to ensuring effectiveness are not well known to maximize the likelihood desired outcomes

• i.e. a widely accepted or standard set of QIs does not yet exist for palliative care, regardless of setting

PALLIATIVE CARE: THE QUALITY CHALLENGE

AS A CLINICIAN, TEAM OR PROGRAM, ASK YOURSELVES…

• “How will we KNOW if or when we have been effective and something is different?”

• Begin by identifying a problem or a process that could be improved • Examples include: large # of faxed requests for

prescription refills, a service that notoriously does not refer, communication among team members, the educational experience of learners

• An institution level example: Sunnybrook Health Sciences Centre’s Quality Dying Initiative (QDI)

SUNNYBROOK’S PCCT

• Our team is committed to improving EOL care for patients and their family members

• Struggle with the questions, “Could the PCCT be involved with the death of every pt in acute care setting?” and “Should the PCCT be involved with the death of every pt in acute care setting?”

• To make truly sustainable improvements, the required elements include “institutional buy in”, “culture change” and a commitment to addressing complex educational processes

• First step was to collect some simple data elements and pose a question to key leaders in organization

• As a tertiary Academic Health Sciences Centre with internationally recognized programs, death and dying are significant elements of our institution’s overall patient and family care experience

• 18 deaths per week occur in the acute care setting at Sunnybrook Health Sciences Centre

• Could improvements be made in the care of patients for whom their death was in some way expected?

QUALITY DYING INITIATIVE



• With very enthusiastic support from the Senior Leadership Team, second step was to articulate a Vision and Goals (not outcomes…yet)


VisionDying patients and their families receive the highest quality of care

GoalSunnybrook will implement strategies that are patient/family, staff/clinician and institutionally

focused to achieve the highest standard in quality of care for dying patients and families


• With very enthusiastic support from the Senior Leadership Team, second step was to articulate a Vision and Goals (not outcomes…yet)

• Third step was to populate a working group with individuals who share the vision and have expertise in Quality Improvement, expertise in EOL care, institutional and key stakeholder influence

• Fourth step was to determine what needed to be in place before identifying a project


• QDI Working Group - Phase 1• Four main areas of focus:

• Literature Review/Best Practices/Evidence• Long Term Perspective Gathering: data collection

process i.e. Family Member Satisfaction Survey• Short Term Perspective Gathering: patients,

family members, staff and clinicians• Organizational Engagement & Communications


QDI: EVIDENCE

• Objective: Outline the specific care domains identified by dying patients and family members as being important elements of overall care

• Product: • Eight separate care domains identified as important

by dying patients and their families • Serve as foundation from which future foci of related

activities are to be defined, evaluated and improved

QDI: EVIDENCE

1. Patient symptom management2. Timely/clear communication3. Information to prepare family for approaching death4. Compassionate care/comfort/dignity/respect5. Patient-Centred Decision making 6. Care of the Family 7. Family support 8. Caregiver satisfaction with hospital facilities/staff

Patient & Family Member Identified Care Domains

Family Member Satisfaction Survey Objective: Develop, pilot and implement a long-term strategy to effectively measure family satisfaction with the experience of the care of their dying family memberPurpose: To prospectively collect data regarding the

perceived quality of the dying experience by family members of adult patients who died at Sunnybrook

• Collaborated with NRC Picker to develop survey• Survey addresses all quality dying domains identified by pts

and families as being important in literature review • Distributed monthly to family members 4-6 weeks following the

death of family member

QDI: LONG TERM DATA COLLECTION PROCESS

SAMPLE OF SURVEY DATA: DETAILS OF DEATH

SAMPLE OF SURVEY DATA:OVERALL SATISFACTION

CORRELATION WITH OVERALL SATISFACTION

• Objective: Gain an appreciation of the experience of family members of former patients

• Product: Family Member Focus Group • Pilot Family Member Satisfaction Survey• Seek contribution to and/or participation on a

potential “Family Member Advisory Committee”• Initial collection of family member stories

QDI: SHORT TERM DATA COLLECTION PROCESS

• Family Member Focus Group • REB approved• March 28, 2012: 11 participants

• “the dying experience forged a lifelong connection for me with SB and when I got the letter I thought - great you didn’t forget about us”



• Objective: Gain an understanding of the experience and perspective of staff & clinicians throughout the organization

• Product: Develop and implement institution wide clinical staff survey• Awareness & marketing; Identification of current

initiatives and potential opportunities; Baseline self-assessment of related skills; Integrate an element that could serve as a corporate indicator

• Objective: Initiate institution wide awareness through communications

• Product: Finalizing slogan, visual, overall strategy for QDI Launch

QDI: ORGANIZATION ENGAGEMENT AND COMMUNICATIONS


QDI: LAUNCH

• Communications Strategy• Clinical Staff Survey • Dissemination of findings from Family

Member Focus Group • Further stakeholder engagement through

follow up presentations to multiple leadership committees throughout the institution

• 325 responses = ~12% response rate (on par with others)• 2/3 of respondents indicated profession• 60% nursing• 20% medicine• 5% social work• 5% = pharmacy, dietician, OT, PT, SLP• 5% = creative therapy, spiritual therapy, resp therapy

and rad therapy

QDI: CLINICAL STAFF SURVEY

98% agreed or strongly agreed with:“I view the quality of the dying experience to be just as important as the quality of any other care element provided in the hospital setting"


• 88% agreed or strongly agreed with: “I am able to recognize when a patient is dying”

• 76% agreed or strongly agreed with: “I am comfortable assessing the symptoms of a patient who is dying”

• 76% agreed or strongly agreed with: “I am comfortable discussing care elements unique to ‘end of life’ with dying patients and their family members”


• 59% agreed or strongly agreed with: “…a care plan addressing unique care needs of dying pts is routinely discussed by the IP team”

• 74% agreed or strongly agreed with: “I know when specialist palliative care input is necessary”


• 48% agreed or strongly agreed with: “…care goals are clearly documented for dying patients”

• 76% agreed or strongly agreed with: “I am comfortable documenting care elements for dying patients”


• Implement interventions that are specific, measurable and address the quality dying domains important to patients and families

• Care Processes:• Standardized EOL Order Set• Standardize Goals of Care Discussions• Integrate Patient Education resources • Family Meetings - routinely integrated into care

and supported by staff/clinician education

QDI: PHASE 2 PROJECTS


• How will we KNOW if or when we have been effective and something is different?

• One option is to begin by identifying a problem or a process that could be improved

• Another option is to begin by identifying a specific domain or element aligning with your values, priorities and/or interests (team or program)

• This is the opportunity for the DPC



HOW WILL WE KNOW WE ARE “THERE”?How will we know we have been effective in BUILDING CAPACITY through… INTEGRATION?

EDUCATION?

BUILDING COMMUNITY?


HOW WILL WE KNOW WE ARE “THERE”?

How will we know we have been effective in BUILDING CAPACITY through… INTEGRATION? - consider a focus eg. EOL, primary care, geriatrics, critical care, oncology, CCAC…and decide on one measureEDUCATION? - Who do you wish you could teach something to? What do you want them to learn? Be sure to measure this before and afterBUILDING COMMUNITY? - find a local colleague who shares the same vision for a product or an outcome and collaborate on a project


From the perspective of building palliative care capacity locally


HOW WILL WE KNOW WE ARE “THERE”?How will we know we have been effective in BUILDING CAPACITY through… INTEGRATION? - consider a focus…let’s not reinvent wheel… let’s collaborate & maximize both resources and likelihood of effectivenessEDUCATION? - ensure we consider appropriate educational measures and outcomes in both projects and overall performance strategyBUILDING COMMUNITY? - it is very likely another DPC member has a shared vision for an outcome; just require a “place” to get together


From the perspective of building palliative care capacity as a division



• We have the opportunity to define both “effective” and “something”

• DFCM Year 4 Implementation Priority


• Much like direct patient care, it is important to demonstrate our effectiveness as a Division

• Uncover areas of “ineffectiveness” (use as leverage for local change)

• Measures, outcomes and quality indicators are the tools to help us get “there”

• “There” is even greater visibility, credibility, sense of being valued and considered essential

• To help carry this further, both locally and as a division, I’m pleased to announce a new role…

DPC Quality Lead




Each of us MUST consider ourselves an essential resource

We must search for two possible components within professional interactions:

CLINICAL AND EDUCATIONAL


THIS IS A CALL TO ACTION!!!

Each of us MUST consider ourselves an essential resource We must search for FOUR possible

components within professional interactions:

From “State of the Division” June 2012 - REVISED!!!

THIS IS A CALL TO ACTION!!!

• What will I contribute clinically?• What will I teach and to whom?• How will I support & mentor moving forward?• How will impact be measured and shared?

“What is improved because of the DPC?”


Documents

PALLIATIVE CARE: MEASURES AND OUTCOMES FOR PROGRAMS, INSTITUTIONS… AND THE DPC