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

1. DPC Grand Rounds Sept 6, 2012 PALLIATIVE CARE: MEASURES AND OUTCOMES FOR PROGRAMS, INSTITUTIONS… AND THE DPC Jeff Myers MD, CCFP, MSEd W. Gifford-Jones Professorship in Pain and Palliative Care Head and Associate Professor - Division of Palliative Care, Department of Family and Community Medicine Faculty of Medicine, University of Toronto

2. 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

3. From “State of the Division” June 2012 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?

4. From “State of the Division” June 2012 HOW WILL WE GET THERE? Our initial strategy is to BUILD CAPACITY through… INTEGRATION EDUCATION COMMUNITY BUILDING

5. DIVISION OF PALLIATIVE CARE 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”?

6. DIVISION OF PALLIATIVE CARE HOW WILL WE KNOW WE ARE “THERE”? How will we know we have effectively… INTEGRATED? EDUCATED? BUILT A COMMUNITY?

7. DIVISION OF PALLIATIVE CARE • Intuitively, anecdotally and through formal processes the sense is integration, educationand building communityare 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?”

8. DIVISION OF PALLIATIVE CARE 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

9. DIVISION OF PALLIATIVE CARE 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

10. DIVISION OF PALLIATIVE CARE • Intuitively, anecdotally and through formal processes the sense is integration, education and building communityare important • If each is in fact important, how will we KNOW if or when we have been effective and something is different? • Define “effective” (has not been done for a DPC) • Define “something”

11. DIVISION OF PALLIATIVE CARE • 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

12. 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

13. Measuring Performance • 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

14. Measuring Performance • 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 = STRUCTURE • execution of a plan = PROCESS • HgbA1C = OUTCOME • “The team spent enough time with me” = THE PERSON’S EXPERIENCE

15. Measuring Performance • 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

16. How is performance measured? • 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 smallgroup session (both learners and teachers)

17. 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”

18. 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

19. WHY MEASURE PERFORMANCE? Choose to respond from one of two perspectives: • Because someone or something in a position of authority* tells us we must • OR • Because 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 *eg. Accreditation Canada, LHIN

20. 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

21. 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…

22. Accreditation canada: KEY palliative care Measures • % of pts with 24/7 access to specialized pall care services - in person and by telephone • % of pts with documented care goals • AnIP 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!!

23. LHIN: Palliative Care mandate from the ministry of health • “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 Lofty…but again, not so bad!!!

24. 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”

25. OK…I may have been avoiding the word…but it’s time • QUALITY of care is defined asthe 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

26. quality indicators • 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!!!

27. quality indicators: data domains • 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?

28. 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

29. 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. awidely accepted or standard set of QIs does not yet exist for palliative care, regardless of setting Palliative Care: The quality challenge

30. 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)

31. 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

32. QUALITY DYING INITIATIVE • 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?

33. QUALITY DYING INITIATIVE • First step was to collect some simple data elements and pose a question to key leaders in organization • With very enthusiastic support from the Senior Leadership Team, second step was to articulate a Vision and Goals (not outcomes…yet)

34. Quality Dying Initiative Vision Dying patients and their families receive the highest quality of care Goal Sunnybrook 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

35. Quality Dying Initiative • First step was to collect some simple data elements and pose a question to key leaders in organization • 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

36. Quality Dying Initiative • 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

37. 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

38. QDI: evidence • Patient symptom management • Timely/clear communication • Information to prepare family for approaching death • Compassionate care/comfort/dignity/respect • Patient-Centred Decision making • Care of the Family • Family support • Caregiver satisfaction with hospital facilities/staff Patient & Family Member Identified Care Domains

39. QDI: Long Term Data Collection Process 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 member Purpose: 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

40. Sample of survey data: Details of death

41. Sample of survey Data:Overall Satisfaction

42. Correlation with overall satisfaction

43. QDI: Short Term Data Collection Process • 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

44. 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”

45. QDI: Short Term Data Collection Process • 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

46. QDI: organization engagement And communications • Objective: Initiate institution wide awareness through communications • Product: Finalizing slogan, visual, overall strategy for QDI Launch

47. Quality Dying Initiative

48. 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

49. QDI: Clinical Staff Survey • 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

50. QDI: Clinical Staff Survey 98% agreed or strongly agreed with: “I view the quality of the dying experienceto be just as important as the quality of any other care element provided in the hospital setting"