Hard Decisions / Hard News: The Ethical (& Human) Dilemmas of Allocating Home Care Resources When Supply Demand Champlain Ethics Symposium Catherine Butler VP, Clinical Care Champlain CCAC September 29, 2016
Objectives 1. Role of the CCAC & Overview of CCAC Services 2. Demand / Need for Services 3. Defining Capacity in Home & Community Care 4. The Issue Supply Demand 5. Resource Allocation & Decision Making in Home Care 6. Ethical Implications of Decision Making 7. Moral Distress 8. Supporting CCAC Staff in Moral Distress 9. The Future and What I Think About at 3AM!
CCAC Quick Facts
CCAC Service Profile 1.3 million residents 18,000 square kilometers 19 Hospitals across 20 sites 21 Family Health Teams (FHT) 69 Family Health Groups / Family Health Organizations 10 Community Health Centres (CHC) 203 Retirement Homes (RH) 60 Long-Term Care Homes (LTCH) 8 School Boards 539 Schools 10 Community Health Links (CHL) 51+ Adult Day Programs (ADP) provided by 30 Program Providers 1 Nurse Practitioner (NP) embedded in Aging in Place Buildings (Ottawa Community Housing Apartments for at Risk Seniors); 5 with RPCT 19 Champlain CCAC Community Nursing Clinics will provide care close to home -
What We Do
Support & Resource Referral CCAC also connects people to other services: Adult day programs Caregiver support groups Friendly visits Hospice care Housekeeping and home maintenance Meal delivery and community dining Rehabilitation Supportive housing Transportation services
Palliative Nurse Practitioners Rapid Response Nurses Mental Health and Addictions Nurses Wound Care Specialists Palliative Care Team School Health Support Services Pediatric Care Placement Coordination Services Long-Term Care, Assisted Living Geriatric Assessment Specialized Services 9
Profile: Higher Acuity Patients Common characteristics of higher needs/complex patients: Unstable medical conditions (3+ diseases) Frequent hospitalizations, visits to emergency Need help with personal care, daily activities At high risk for institutionalization Caregiver burnout is common 23.3% of our patients are over 85 62% of our complex/ chronic patients have high care needs 10
Demand / Referrals In August 2016 Champlain CCAC received: 2,514 new referrals from the community 2,443 new referrals from hospitals 114 of these were Hospital to Home patients This represents an increase in referrals of over 15% from 2015/16
CCAC Program Capacity Higher acuity patients have increased by 15.9% since last year We have now reached almost 112% in overall patient capacity Some programs such as Stay at Home exceed 132% capacity
CCAC YTD Capacity
Snapshot of Demand 2.2 M people received homecare services (publicly funded) in 2012 (Stats Canada, 2014) In 2011 1.5M a 55% increase from 3 years prior Canadians prefer to receive care at home for as long as possible (CHCA, 2015) Hospital beds decreased by 45% in 25 years; base budgets frozen; ALC patients seen as bed blockers (14% of beds) 82% increase in patients with higher medical needs since 2009 (Globe & Mail, 2015) LTC beds increased by 3% between 2007 and 2014 (78,000 in ON) Waiting list in ON for LTC is over 22,000
Capacity Facts Every CCAC is required to balance their budget Funding has not kept pace with demand numbers, acuity, complexity of needs Unlike hospitals, CCACs have little flexibility in how to respond to capacity other than waitlist or ration (effectively) Largest spending is direct care - in Champlain it is PSS Limited services for growing number of complex dementia patients
Impacts of Capacity Challenges CCACs forced to redirect care to those who are most ill and vulnerable constantly shifting Lower needs clients often cannot access services increases their risks for crisis Inability to provide proactive or upstream care / service that might keep patients at home longer Caregivers often more burdened by care of loved ones / friends increased risk of burnout In early 2015 over 45,000 people on waitlists in Ontario for home care services wait lists now the norm
Impacts Continued Impacts at all levels: Society Health and social services systems Organizational Health Care Teams Families Individual Patients Individual Health Care Staff CCAC Care Coordinators, Decision Makers, Managers, etc.
Resource Allocation in CCAC Based on historical usage patterns based on current funding for year from LHIN (MOHLTC) Not truly needs based requires force fitting into available budget with % increases in highest need areas (PSS, nursing, therapies, etc.) Look at historic spend rates to calculate relative proportion of budgets allocated to clinical lines balance with new programs being launched, anticipate impacts Constant focus on efficiencies, streamlining, LEANing processes
Understanding the Problem Resource allocation distribution of goods and services to programs and people (CNA, 2000) Three types of scarcity in health care: 1. Supply scarcity 2. Fiscal scarcity 3. Crisis scarcity Decision making around resource allocation: Three levels: Societal Institutional Individual
Resource Allocation Continued Each Director & Manager provided with budget for specific clinical / administrative lines Care Coordinators assess to determine individual patient need and allocate levels of service based on need Standardized tool Aligned with any organizational instruction regarding min / max hours of service; waitlists; guidelines; etc. Develops care and service plans to address needs Limited ability to coordinate system level supports or integration due to current caseloads
Decision Making in CCAC Global resource allocation decisions guided by MOHLTC LHIN budget parameters by CCAC leadership Directors and Managers manage budget to clinical lines through day to day decision making Care Coordinators determine resource allocation for individual clients is this fair in a time of extreme constraint?
Ethical Decision Making at CCAC
Ethical Decision Making
The Ethics the Dilemma
Not All Decisions Are the Same Resource allocation can be more ethically challenging in rural communities where resources are fewer Creates conflict interpersonally, intrapersonally, between sectors and stakeholders Challenges stated values of organizations and staff No right or wrong (value based) decisions if based on evidence informed frameworks and processes (CCAC Risk Management Framework; Ethical Decision Making Framework and Tools) BUT the more the options are limited and financial outcomes are prioritized, the less relevant these tools are Many ethical approaches available (philosophical, communitarian, utilitarian, deontological) health care approaches beneficence, nonmaleficence, justice, veracity, fidelity (Gardent & Reeves, 2009)
CCAC Practice Use available ethical decision making tools when relevant and appropriate to determine resource allocation considerations Risk management a critical discussion Quality & Risk team, professional ethical support Clarify with staff how decision was made and direct on implementation Provide tools, information, etc. to support patients and staff Monitor impacts BE HONEST & TRANSPARENT
Framework
Moral Distress Moral Distress Occurs when a person believes they know the right thing to do, but is prevented from acting. Moral Uncertainty Is when a person is unsure of what principles or values to apply to resolve moral distress. Moral Dilemmas Occur when two or more clear principles apply, but they support mutually inconsistent courses of action.* Mike Kekowickh 2015 Lucia D. Wocial, Achieving Collaboration in Ethical Decision Making: Strategies for Nurses in Clinical Practice, Dimensions of Critical Care Nursing, 1996.
What Causes Moral Distress? Clinical situations/internal Factors/External Factors End of Life Challenges Conflicts of Interest Interdisciplinary Team Conflict Disrespectful Interactions Workplace Violence Ethical Dilemmas Patient/Family Conflict Conflict Between Personal and Corporate Values Resource issues (money, time)
What Does Moral Distress Do? Unresolved moral distress leads to Moral Residue. Moral Distress and Moral Residue cause suffering. Moral Distress can lead to Burnout. (Mike Kekewich, 2015)
Signs of Moral Distress Physical Emotional Behavioural Spiritual
Lack of awareness Lack of skills Lack of confidence Institutional obstacles Lack of Administrative Support Power imbalances Policy and Procedure limitations Mike Kekewich (2015) Barriers to Addressing Moral Distress
Four A s for addressing moral distress (Rushton, 2006)
Supporting Staff in Moral Distress Acknowledge it!!! Respect it. Respect the reality of what staff are dealing with Remove as much of the ethical element of the moral distress as possible (e.g. Champlain CCAC to centralize decision making for waitlists and service) Address barriers encourage staff to take action where they can Help staff to work through the Four A s Support staff to ask the questions to target their distress Provide organization / team / individual opportunities to discuss moral distress and share coping mechanisms Make supports visible EAP, communities of support, frequent communication, information Genuinely request feedback and suggestions honor it. Be honest and transparent about organizational situation and timelines and expectations Consistently encourage and remind staff that they have the ability to deal with this distress and it will not last forever Encourage self care and life balance
The Future Resource scarcity and difficult allocation decisions are the new reality Need to normalize expectations and processes to reduce impacts and stress Continue to look for innovative ways to provide services focused on outcomes Focus on integration and intensive care coordination Patient s First Legislation & Health Reform There are positives to scarcity forces change and innovation Build in ongoing supports for staff experiencing moral distress it will not be going away Mindfulness as organizational goal (+++ evidence)
What Keeps Me Up at Night Impacts on patients and families my fiduciary role and responsibility as a health leader The parents and caregivers My staff. At all levels. Reflection and reevaluation of decisions Am I doing enough as a leader? My cat. He is a jerk.