Trevor Frise Smith June 2010 “Comprehensive Assessment & Integration of Care Planning using the interRAI Palliative Care: findings from Ontario community-based care.” Trevor Frise Smith, PhD. 1,2 Karen Lacelle 3 1 Associate Professor, Nipissing University, Ontario, Canada 2 Fellow, interRAI. 3 Educator, West North East Community Care Access Centre Northern Ontario Medical School – Research Conference Laurentian University, Sudbury, Ontario June 04,

Trevor Frise Smith June 2010 Agenda Brief introduction to interRAI and the interRAI Palliative Care Use of the interRAI PC in Ontario Care Planning – caregiver distress 2

“Now that you mention it doctor …. symptom reporting and the need for systematic questioning in a specialist palliative care unit” Study by White, McMullan & Doyle, J of Pall Med (12) Compared symptom self- report with systematic questioning. 2/3 of symptoms experienced by patient were not self-report. Trevor Frise Smith June

Trevor Frise Smith June 2010 interRAI Non-profit organization International group of clinicians & researchers Develop standardized assessment instruments for (mainly) non- acute care Use as “admission or intake” assessment. Focus upon client functioning, needs, resources. Not diagnosis Meets twice a year Science (e.g., cross-national comparisons) Instrument development Support implementation in other nations Holds copyright to RAI assessment instruments Grants royalty-free licenses to governments and care providers 4

Trevor Frise Smith June 2010 interRAI develops “clinical support” tools Not automated, computerized care planning Rather, client-level information, can be computerized, then used to assist care planning Not diagnostic tools Not automatic decision tools Rather - help with decision making, assist care planning. 5

Trevor Frise Smith June 2010 Criteria for Adding Items on Assessment Form Care planning “trigger” Outcomes assessment Quality indicator Case-mix grouper In addition: Fewest number of items for “trigger” All items, research / clinical based Ongoing validity & reliability assessment 6

Provincial Implementation of interRAI Instruments in Ontario InstrumentSettingDate of Implementation PopulationNumber of assessments RAI-Home Care (RAI-HC) CCAC (Community) CCAC (Hospital) Long Stay Pts awaiting LTC 1,100,000 60,000 Contact Assessment (CA) CCAC (Intakes) Initial implementation in 2006 Hosp inpt Hosp outpt Community 24,000 10,000 28,000 RAI-Mental Health (RAI-MH) Inpatient Psychiatry 2005All pts350,000 RAI 2.0CCC LTC 1996 Underway since 2005 All pts All residents 356,000 73,000 Hirdes May 2010

Trevor Frise Smith June 2010 In Ontario - - CCAC sites in 6 (red) of the 14 Local Health Integration Networks (LHINs) have (will have) adopted the interRAI PC. LHIN-1 (Erie St. Clair) LHIN-2 (South West) LHIN-3 (Waterloo Wellington) LHIN-4 (Hamilton Niagara Haldi- Brant) LHIN-5 (Central West) LHIN-6 (Mississauga Halton) LHIN-7 (Toronto Central) LHIN-8 (Central) LHIN-9 (Central East) LHIN-10 (South East) LHIN-11 (Champlain) LHIN-12 (North Simcoe Muskoka) LHIN-13 (North East) LHIN-14 (North West) 8

Trevor Frise Smith June 2010 interRAI PC Domains version 2006 (9) Identification & Intake/initial hx Health conditions Oral/nutritional status Skin conditions Cognition Communication Mood & Behaviour Psychosocial well-being Physical functioning Continence Medications Treatments & procedures Responsibilities / directives Social supports Discharge info Assessor info 9

Trevor Frise Smith June

Trevor Frise Smith June

Caregiving Patterns and Caregiver Distress Among Community Palliative Care Clients Trevor Frise Smith June

Sex and Marital Status of Palliative Home Care Clients, Ontario, Trevor Frise Smith June

Percentage of Palliative Home Care Clients Diagnosed with Cancer, Ontario, Trevor Frise Smith June

Top 10 Cancer Diagnoses (4a) and Non-Cancer Diagnoses (4b) of Palliative Home Care Clients, Ontario, Trevor Frise Smith June

Indicators of Caregiver Distress 1 among Informal Caregivers of Palliative Home Care Clients, Ontario, Indicators of caregiver distress include: helper(s) unable to continue caring activities; primary informal helper expresses feelings of distress, anger, or depression; family or close friends report feeling overwhelmed by person's illness. Trevor Frise Smith June

Palliative Home Care - Ontario Trevor Frise Smith June

Percentage of Palliative Home Care Clients with Distressed Caregivers 1 by Estimated Prognosis 2, Ontario, Trevor Frise Smith June

Percentage of Palliative Home Care Clients with Distressed Caregivers 1 by Unstable Health 2, Ontario, Trevor Frise Smith June

Percentage of Palliative Home Care Clients with Distressed Caregivers 1 by Level of Physical and Cognitive Performance 2,3,Ontario, Trevor Frise Smith June

Percentage of Palliative Home Care Clients with Distressed Caregivers 1 by Count of Gastro-Intestinal Problems 2 and Count of Nutritional Issues 3, Ontario, Trevor Frise Smith June

Percentage of Palliative Home Care Clients with Distressed Caregivers 1 by Status of Dyspnea and Adequacy of Pain Control, Ontario, Trevor Frise Smith June

Percentage of Palliative Home Care Clients with Distressed Caregivers 1 by Indicators of Potential Depression, Ontario, Trevor Frise Smith June

Percentage of Palliative Home Care Clients with Distressed Caregivers 1 by Hours of Informal Care Received over last 3 days, Ontario, Trevor Frise Smith June

Percentage of Palliative Home Care Client's with Distressed Caregivers 1 by Palliative Home Care Client's Perspectives on Life, Ontario, Trevor Frise Smith June

Self-reported sadness, depression by “wish to die now” Trevor Frise Smith June

Implications for Policy and Practice interRAI PC may be used to identify clients and caregivers at risk of adverse outcomes and distress Seven CCACs have begun to use PC, and OACCAC plans to expand to province wide implementation Many predictors of caregiver distress may be manageable through good quality care to the palliative client Palliative care appears to be a restricted service that reaches mainly cancer patients Need to consider equity of access for persons dying due to other causes Trevor Frise Smith June

Thank You! Questions or Comments? Trevor Frise Smith June