Research and Innovation in Aging Forum December 15, 2015

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Palliative Care: Evaluating Regional Initiatives to Reduce Hospital Utilization Ray Viola, MD Division of Palliative Medicine Department of Medicine Research and Innovation in Aging Forum December 15, 2015

Presenter Disclosure Faculty: Raymond Viola Relationships with commercial interests: None Potential for conflict of interest: None

Acknowledgements Project Funding: Ontario Academic Health Science Centres Alternate Funding Plan Innovation Fund SRK pilot project: South East LHIN Administrative Leader: Margaret George, Former Director, Southeastern Ontario Palliative and Endof-Life Care Network

Objectives 1. Define and describe palliative care 2. Review factors associated with location of palliative care delivery for individual patients 3. Describe two southeastern Ontario initiatives to facilitate end-of-life care in the community 4. Outline an ongoing study to evaluate these 2 initiatives

Palliative Care: Definition Disease not responsive to curative treatment Involves active, total care of patient and family Provided by an interdisciplinary team Physical, psychological, social & spiritual care Goal to optimize quality of life World Health Organization, 1990

Palliative Care: Definition Not included in WHO definition: Specific diagnosis Age Timeframe Settings of care Who delivers the care CHPCA, 2002

Palliative Care vs. End-of-Life Care Current model Gibbs et al, 2002 (Heart 2002)

Canadian Cancer Statistics 2015: Cancer Deaths and Mortality Rates

Canadian Cancer Statistics 2015: Current & Future Population Age Distributions

Canadian Cancer Statistics 2010: Causes of Death 43.1%

Quality End-of-Life Care Conceptual Framework 1. Pain & symptom control 2. Dying process not prolonged 3. Prepared for death 4. Support of family & friends 5. Supported decision making 6. Spiritual support and meaning 7. Holistic & individualized care 8. Death in supportive environment/location of choice Howell & Brazil, 2005

Preferred Place of Care and Death Most palliative care patients in Canada prefer to be cared for at home and to die at home Stajduhar et al, 2008 Brazil et al, 2005

Place of Death There has been a steady decline over time in the proportion of deaths in Canada that occur in hospital but still Over 50% of deaths in Canada occur in hospital Wilson et al, 2009

Preferred Place of Death 214 informal caregivers interviewed after death Home preferred by patient and caregiver (63%) Caregiver preferred institutional death more often (14% vs 5%, p<0.001) Caregivers said place of death was appropriate, even if not preferred (93%) Brazil et al, 2005

Home Death 73 cancer patients in Edmonton 47% died at home When both patient and caregiver desired a home death, 66% died at home When both did not agree, 20% died at home Cantwell et al, 2000

Predictors of Home Death Patient and caregiver both desire home death OR 8.38, CI 2.41-29.13 More than one caregiver OR 5.47, CI 1.42-21.03 Physician supports home death OR 7.15, CI 0.65-79.14 Cantwell et al, 2000

End-of-Life Costs Canadian study of palliative care costs Over the last 5 months of life costs gradually increased as death approached A large portion of the cost increase was due to inpatient hospital care Dumont et al, 2010

Ontario Emergency Room Wait Times Time spent in Emergency Rooms in Ontario (hours) Sept 2013 Target Volume % of Total Total 7.8 450,388 Complex Admitted Patients Complex Non- Admitted Patients Uncomplicated Patients 26.9 8.0 45,754 10% 6.9 8.0 249,004 55% 4.0 4.0 155,175 34% http://edrs.waittimes.net/en/provincialsummary.aspx?view=0

Cancer System Quality Index Percentage (%) % 19 100 90 80 70 60 50 40 30 20 10 Cancer End-of-Life Care in Ontario Percentage of cancer patients who visited the emergency department (ED) or who (2006-2009) were admitted to the intensive care unit (ICU) in the last 2 weeks of life, or who died in acute care hospital, 2006, 2007, 2008 and 2009, Ontario 0 Visited ED in last Emergency 2 weeks of liferoom Cancer System Quality Index 2013 2013 in last 2 weeks Admitted to ICU in last 2 weeks of life Event Died care in hospital acute hospital

Emergency Room Visits 2002-2005 Retrospective study of Ontario cancer patients who visited emergency rooms near the end of life 36,600 visits in last 2 weeks of life 71.9% admitted 20.7% discharged 4.8% pronounced dead Visits often because of symptoms Pain, dyspnea, fatigue, nausea, vomiting, constipation Potentially manageable at home Barbera et al, 2010

Emergency Room Visits US study of hospice patients with cardiac disease Independent factors preventing emergency room visits: Caucasian Nursing visit frequency Morphine use Medication compliance Caregiver presence along with a hospice emergency kit in the home Schonwetter et al, 2008

Ultimate Goal The Canadian health care system should provide the best end-of-life care in the most appropriate setting preferred by each person facing death

Southeastern Ontario Home Death Working Group Region-wide representation Engaged relevant organizations & professions ambulance, funeral homes, coroner pharmacies, physicians, nurses South East Community Care Access Centre (CCAC)

South Local Health Integration Network (LHIN)

South East LHIN

Planning for a Home Death Clarify resuscitation status Plan for pronouncement & certification Support family throughout the dying process Avoid unnecessary transfers to hospital Avoid unnecessary calls to coroner

The Yellow Folder Introduced by community nurse when patient s functional status is 50% Three main components: DNR Form Information brochure Expected Home Death Planning Tool

The Yellow Folder Brochure: When Death Occurs at Home For informal caregivers: Physical changes as death nears What to do for patient s comfort What to do at time of death

Yellow Folder: Planning Tool MD or RN (EC) Will pronounce Avoid & certify calling 24-7 Nurse coroner Cannot attend pronounces for an 24/7 MD or RN (EC) will certify within 24 hours MD & RN (EC) Funeral home expected cannot death! agrees certify within 24 hours Funeral home does not agree Explore local alternatives Explore local alternatives

Yellow Folder in Southeastern Ontario Started April 2010

Symptom Response Kit (SRK) Places medications and supplies in the home For managing future sudden changes in the patient s condition

SRK Pilot Project in Southeastern Ontario Process One pharmacy provider for whole region Ordered by MD When patient s functional status is 50% Medications custom selected for the patient Sealed cardboard box Yellow labels on all sides of box Delivered by 21:00 next work day

SRK Pilot Project in Southeastern Ontario When the SRK is needed: Nurse assesses patient Nurse administers treatment from SRK Nurse calls MD after treatment MD & nurse plan ongoing care

SRK Pilot Project in Southeastern Ontario Started February 2012

Evaluation of Symptom Kits Symptom kits are used in many jurisdictions, but are not widely reported or evaluated Walker et al, 2010 Bishop et al, 2009 Wowchuk et al, 2009 LeGrand et al, 2001

Evaluation of SRK in Southeastern Ontario Research Question: Does use of the Yellow Folder & SRK increase the likelihood of that adult palliative care patients receiving home care services will die at home? Secondary Outcomes: Avoid emergency room visits? Avoid hospital admissions? Funding: Ontario Academic Health Science Centres Alternate Funding Plan Innovation Fund

Research Team Centre for Health Services and Policy Research, ICES Christine Knott, PhD Dept of Public Health Sciences, ICES Patti Groome, PhD Helene Ouellette-Kuntz, PhD Dept of Public Health Sciences Paul Peng, PhD Colleen Webber, PhD (cand) South East Community Care Access Centre (CCAC) Donna Logan, RN

Retrospective Studies Large administrative databases linked: ICES datasets South East CCAC dataset Population Palliative care clients of South East CCAC between April 2009 and March 2014

Retrospective Studies ICES datasets Registered Persons Database - RPDB Discharge Abstract Database from the Canadian Institute for Health Information CIHI DAD National Ambulatory Care Reporting System - NACRS Continuing Care Reporting System CCRS OHIP Claims Database Ontario Cancer Registry - OCR Canadian Census

Ecologic Study Historical time periods: 1 year prior to Yellow Folder (Apr/09 - Mar/10) Yellow Folder alone (Apr/10 - Feb/12) Yellow Folder and SRK (Mar/12 - Mar/14) Outcomes Place of death: community vs hospital ER visits Hospital admissions

Retrospective Cohort Study Identify South East CCAC palliative care clients who Received Yellow Folder and/or SRK Did not receive Yellow Folder or SRK Outcomes Place of death: community vs hospital ER visits Hospital admissions

Retrospective Cohort Study Control for: Demographics - age, sex, SES, co-habitation Geography - residence location in region, rural vs urban Clinical - cancer vs non-cancer, co-morbidities Elapsed time - since identified as palliative Patient and caregiver preferences not available

Retrospective Cohort Study In southeastern Ontario, about 800 deaths/year of CCAC clients identified as palliative Sample size of 1000 provides 80% power to show a decrease in hospital deaths from 55% to 44% 2-sided significance = 0.05

Other Relevant Outcomes Quality of life/symptoms Quality of care Satisfaction with care Costs

Perceptions of Professional Care Providers Focus groups Surveys Targets: Home care program managers/coordinators Community nurses Palliative care nurse practitioners Family physicians Palliative care physicians

Perceptions of Surviving Caregivers Mail survey to caregivers of patients who died 3 months earlier Care received, personal costs associated with care, perceptions/memories of Yellow Folder and SRK Invitation to participate in an in-depth qualitative interview Confidence in care provided, satisfaction

Cost-Effectiveness Direct costs of Yellow Folder and SRK Ambulances avoided? ER visits avoided? Hospital beds avoided? Family costs

Summary Many palliative care patients prefer to remain at home and die at home Yellow Folder initiative facilitates planning for a home death Symptom Response Kits may help palliative care patients stay at home Evaluation ongoing

References 1. Barbera L, et al. CMAJ 2010; 182: 563-8 2. Bishop M, et al. J Palliat Med 2009; 12: 37-44 3. Brazil et al. Palliat Medicine 2005; 19: 492-499 4. Bruera et al. J Palliat Care 1991; 7(2): 6-9 5. Cantwell et al. Journal of Palliative Care 2000; 16: 23-38 6. Dumont S, et al. Palliat Med 2010; 24: 630-40 7. Gibbs et al. Heart 2002; 88(Suppl II): ii36-ii39

References 8. Howell & Brazil. J Palliat Care 2005; 21(1): 19-26 9. LeGrand S, et al. Am J Hospice Palliat Care 2001; 18: 421-3 10.Schonwetter R, et al. J Palliat Med 2008; 11: 1142-50 11.Stajduhar K, et al. Palliat Med 2008; 22: 85-8 12.Walker K, et al. Am J Hospice Palliat Care 2010; 27: 254-60 13.Wilson D, et al. Soc Sci Med 2009; 68: 1752-8 14.Wowchuk S, et al. J Palliat Med 2009; 12: 797-803

References 15.Canadian Cancer Society s Advisory Committee on Cancer Statistics. Canadian Cancer Statistics 2010. Toronto, ON: Canadian Cancer Society; 2010 16.Canadian Cancer Society s Advisory Committee on Cancer Statistics. Canadian Cancer Statistics 2015. Toronto, ON: Canadian Cancer Society; 2015 17.A model to guide hospice palliative care. Ottawa: Canadian Hospice Palliative Care Association (CHPCA); 2002 18.Cancer System Quality Index 2013. Cancer Quality Council of Ontario 19.Cancer pain relief and palliative care. Geneva: World Health Organization; 1990 20.http://edrs.waittimes.net/En/ProvincialSummary.aspx?view=0