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Balancing Independence and Safety in Home Care Service

DeliveryBetter care giving through the development of core

competencies for ethical decision-making

Annual NICE Knowledge Exchange 2008

Frank WagnerBioethicist, Toronto Central Community Care Access Centre and

University of Toronto Joint Centre for BioethicsAsst. Professor, Dept. of Family and Community Medicine

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Learning Objectives

1. Explore key issues in community healthcare ethics in caregiving and how they differ from hospital-based issues

2. Trends impacting health care ethics and caregiving3. Need for a decision-making framework4. Building ethics capacity in the community health and

support sector 5. Applying a decision-making framework and tools to

address a case illustrating the dilemma of independence and safety in a community setting

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Acute vs LTC Approaches

Acute Care

disease paradigm cure orientedshort term/crisishigher techmedical servicesmore predictable costspassive patientmedical team

Community Long Term Care

disability paradigmfunction orientedlonger termlower techmed plus social servicesless predictable costsactive patient/familyinter-professional team

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What are Community Healthcare Ethics?

• Ethics applied in a community setting • Endeavour to promote the sector’s

philosophy of supporting clients' independence and ongoing integration or reintegration in their community– Unique view sensitive to how client’s self-

determination may be affected by both distinct services and the different settings they are provided in

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Differences from Hospital-based Healthcare Ethics

• Different Goals – Promote independence & ongoing integration/re-

integration vs. treatment with a curative goal• Different Services

– Offers myriad distinct services, such as case management, personal care, homemaking, repair and maintenance services, adult daycare, and respite care, in addition to some acute services

• Different Scope – Complex combination of formal and informal care &

multiple non-health issuesThese differences create ethical dilemmas that

are not suitable for ethical analysis or resolution using an ethical framework based on a hospital-based model

6Patient Flows =

CURRENT “CONTINUITY” OF CARE1

PRIMARY CARE NO INTERMEDIATE CARE TERTIARY CARE

Community basedservices

Hospital basedservices

Emergency Room

Long Term Care

Heart Failure Clinics

Diabetes Education

Emergency Room

MIND THE GAP

1Medical Advisory Secretariat, Ontario Ministry of Health, 2007.

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Key Trends Affecting Health Care Ethics• Increased pressures

– (governments & payers) forces change in practice

• Increased caseload & complexity– of issues for community health care staff moral distress

• Changing demographics– elderly living at home, living in assisted living facilities,

dependence on home care services, risk

• Impact of medical technology– on people living longer with chronic conditions unease

• Earlier hospital discharge– of non-compliant &/or complex cases - disagreement with choices

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Ethical Dilemmas in Community

• Access to service, limited resources, increased pressure for hospital discharge

• Conflict over treatment decisions, issues of autonomy, relationship of patient & family

• Moral distress stemming from patients living with increased risk, disagreement with patient choice

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2000 Survey of Health Care Providers

• Key Issues in Community Health Care:– Making choices– Priority setting– Workplace demands– Environmental– Client Safety

• Wide range of clinical conditions, increasing complexity, many choosing to live at risk with serious consequences, conditions at home may change, move to 24/7 care

– Staff Safety• Difficulty with location of worksite, lack of control of work

environment, community safety issues, lack of back up for workers

• Consent

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Recurring Theme

Decision-Making Capacity• Larger population incapable of informed decision-

making.• Greater population with impaired cognitive and

communication abilities.• Increased use of substitute decision makers.

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New Focus

• Complex clinical relationships ‘Difficult’ clients, ‘challenging’ family members,dysfunctional’ teams

• BoundariesJust like home, just like family?

• Client sexualityConflicts in beliefs & values, lack of privacy, need forassistance, free & informed decisions?

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Building Ethics Capacity

To enable staff at all levels to…

Recognize an ethical issue when they face it

Learn to use and apply an ethics decision-making framework to work through cases

Know where to get help

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Community Ethics Toolkit:A Common Approach in Applying

Decision-Making Tools

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Casey House

HospiceGeorge

Brown CollegeCentre For Health

Science

VHA HomeHealthCare

CanCareHealth

Services

S.P.R.I.N.T.

CentralCCAC

PreferredHealth Care

Services

SurreyPlace

Centre TorontoCentralCCAC

TorontoPublicHealth

ProHomeHealth

Services

SRTMed-Staff

Mid-Toronto

CommunityServices

CaleaLimited

City ofToronto

Home forThe Aged

BellwoodsCentre for Community

Living

ClosingThe Gap

HealthcareGroup

CommunityCare East

York

MississaugaHalton CCAC

SouthRiverdale

CommunityHealth Centre

St. ElizabethHealth Care

NightingaleHealth Care

Circle of Care

HNHBCCAC

COTAHealth

CommunityRehab

ParaMedHome Health

Care

SpectrumHealthCare

Central WestCCAC

CANES Home Support

Services

StorefrontHumber Inc.

EtobicokeServices for

Seniors

CEN Membership

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Motivation for Framework• Inconsistency in approach/decision-making• “Doing the best we can” without direction or guidance• Lack of framework or process to aid in making good decisions• Personal biases and self-projecting• Wanted more consistent outcomes in practice/community

settings• Wanted a common approach -- framework, tools and resources

-- for ethical decision making on an inter-organizational basis• Impact of policy and practice• Concern over vulnerability of clients• Address balance between supporting people in community

while being concerned for safety

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Ethical Decision-making in Community Health Care

Critical reflection on ethical/moral issues arising in physical medicine, rehabilitation, complex continuing care, long-term care, mental health, home care, and research toward:

• deciding what we should do (what decisions are morally right or acceptable);• explaining why we should do it (justifying our decision in moral terms);• describing how we should do it (the method or manner of our response)

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Ethics Tools: Community Health & Support Sector

1. Staff education2. Community code of ethics 3. Decision-making worksheet4. Case reviews5. Ethics Advisor6. Ethics Facilitators

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Decision-Making Worksheet

• Step-by-step tool• Considers facts, emotions, ethical principles,

alternatives & consequences, & outcome evaluation

• Forum for open & non-threatening discussion

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Step 1: Identify the Facts - 4 Box Method

Contextual Features:Other family or relationships involved?Any care plans put in place so far?Relevant social, legal, economic, or institutional circumstances?Other relevant features?• Limits on confidentiality? • Resource allocation issues? • Legal implications • Research or teaching involved? • Any provider conflict of interest?

Quality of Life:Quality of life in client’s terms Client’s subjective acceptance of likely quality of life Views and concerns of care providers

Client Preferences:Client’s preferencesCapacity to decide • If yes, are client’s wishes informed,

understood, voluntary? • If not, who is substitute decision maker?

Does the client have prior, expressed wishes?

Is client’s right to choose being respected?

Medical Indications:Client’s medical problem, history, and diagnosis• Acute, chronic, critical, emergent, and

reversible?• Goals of treatment?• Probabilities of success?Plans in case of therapeutic failure?Potential benefits of care?How can harm be avoided?

Jonsen, Albert, Siegler, Mark and William J. Winslade. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine Publisher: McGraw-Hill Medical; 5 edition (May 22, 2002).

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STEP 4: ACT ON YOUR DECISION AND EVALUATE

1. Develop an action plan (Note: the actual plan should be documented in the chart) Given all the information that you have, choose the best option available. Develop an action plan. Present your suggested alternative and action plan to the client and those involved in such a way that it allows them to accept the plan. Re-examine the alternatives if other factors come to light, if the situation changes, or if an agreement cannot be reached. Determine when to evaluate the plan. Document and communicate the plan

3. Self-evaluate your decision How do you feel about the decision and the outcome? What would you do differently next time? What would you do the same? What have you learned about yourself? What have you learned about this decision-making process?

2. Evaluate the plan What was the outcome of the plan? Are changes necessary? Document the evaluation.

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Summary – Mrs. V

A woman with severe arthritis is admitted to hospital with a broken arm. As her discharge approaches, hospital staff become increasingly concerned because they know she lives alone in a basement apartment. They believe she will no longer be able to get up and down the stairs on her own, as she was largely using her arms to pull herself up. She insists on going home even though her family refuses to get her the equipment she needs to function at home and budget constraints prevent the CCAC from providing her with the amount of care she needs.

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Step 1: Identify the Facts – 4 Box Method

Contextual Features• Spanish-speaking • Lives in a basement apt. in brother and sister-in-law’s house• Requires equipment for everyday activities, & PSW support x2/day• Family refuses to pay for equipment• Biased translators

Quality of Life• For her, a good quality of life would be to go home and be with her family• CC says she is generally very happy• Because of her cultural background, she expects that her family will take care of her• The medical team thinks she should go to a LTC facility to get the care she needs• CC thinks Mrs. V could manage well at home with supports

Patient Preferences• Wants to go home• Evaluated as capable• CC is trying hard to find out what Mrs. V wants

Medical Indications• 82 y.o. female • Severe arthritis• Broken arm• Mobility and everyday activities a challenge• Ready for discharge from a Rehab hospital

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STEP 2: DETERMINE THE ETHICAL PRINCIPLES IN CONFLICT

Identify ethical issues (i.e. what ethical principles are in conflict?) ‏Refer to Code of Ethics on the last page for further details.

• The client is capable, so her decision to live at risk must be respected.

Informed choice and empowerment

• CCAC organized services made it impossible for the client to get all the services she needed to be maintained in her home (needed access to regular care throughout the day).• She would refuse services, though based on her preferences and wishes

Fair and equitable access

• Need to advocate for patient to receive additional care from CCAC and other community agencies (ie Meals on Wheels, homemaking help, volunteer drop ins, Life line).• Also need to advocate for patient’s preference to go home (hospital staff trying to make him go to LTC)‏

Advocacy

• If/when the client goes home she will be living in great risk. She is nearly immobile and needs considerable help with ADL’s. She lives in a basement apartment so there are also concerns around fire safety or how she would get help if she were to fall.

Client safety/Health and wellbeing

Explain the IssuePrinciple

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STEP 3: EXPLORE OPTIONS

Explore options and consider their strengths and weaknessesBrainstorm & discuss options either alone or with peers. Be creative and use your imagination. Consider a compromise. Predict the outcomes for each alternative. Does the alternative fit with the client/family values? Question whether the alternative meets the company policies, directives and regulations.

•She is still at risk of falling •She will have to manage her own care for most of the day, which she may not be able to do

•This is what the client wants•At least there will be some services in the home to make sure she is alright

3. Get the client’s opinion from a reliable translator, and send her home with as many services as possible (taking into consideration available resources and client preferences)

•Mrs. V would be at great risk of falling•She would also be isolated because she cannot get up the stairs•She would not be able to perform everyday activities including cooking and bathing

•Mrs. V would be happy because she would be at home•There would be no cost to the family

2. Go along with the client’s family’s plan and send Mrs. V home with no support

This is not what the client wantsShe would be separated from her family

•She would be guaranteed to get the care she needs•She would not be at risk

1. Go along with the hospital staff’s plan and help have the client placed in a long term care facility

WeaknessesStrengthsOption

Seek help if necessary and consult with the person you report to.

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1. Develop an action plan (Note: the actual plan should be documented in the chart)‏Given all the information that you have, choose the best option available. Develop an action plan. Present your suggested alternative and action plan to the client and those involved in such a way that it allows them to accept the plan. Re-examine the alternatives if other factors come to light, if the situation changes, or if an agreement cannot be reached. Determine when to evaluate the plan. Document and communicate the plan

• I acted on option 3• Mrs. V will only accept personal support in the morning

- This resolved the issue of not being able to provide Mrs. V with a PSW twice a day• I am sending an occupational therapist to her home to assess mobility problems and environment

- The OT will recommend additional services if needed

3. Self-evaluate your decisionHow do you feel about the decision and the outcome? What would you do differently next time? What would you do the same? What have you learned about yourself? What have you learned about this decision-making process?

• I can live with this decision, but it is not ideal• I am worried about Mrs. V because I know she needs a lift to help her up the stairs and additional personal support. I also know she will be isolated and will be at great risk of falling.• I am glad her wishes were respected

2. Evaluate the plan What was the outcome of the plan? Are changes necessary? Document the evaluation.

• The patient just arrived home• I will follow up with a face to face home visit within a few days• In the interim the OT will let the Care Coordinator if any changes need to be made

STEP 4: ACT ON YOUR DECISION AND EVALUATE

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Outputs to Date• sdf

– 32 member organizations• Community Ethics Toolkit• Newsletter – Ethics in Action• Staff Education Workshops

– Ethical Decision-Making– Communities of Care; Elder Abuse, Discharge Planning, Accreditation

• OACCAC 2007 Award of Excellence for Systems Partnership• Academic

– University of Toronto – Development of Core Competencies for Mandatory Inter-professional Education

– George Brown College – “Learning To Care Together” Inter-professional Ethical Decision Making Module

• “Community Health Care Ethics” in The Cambridge Textbook of Bioethics, Cambridge 2008

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Community Ethics Resources• Community Ethics Network: Toolkit and Literature

Reviewwww.jointcentreforbioethics.ca/partners/cen.shtml

• Toronto Central Community Care Access Centrewww.jointcentreforbioethics.ca/partners/tccac.shtml

• University of Toronto Joint Centre for Bioethicswww.jointcentreforbioethics.ca/index.shtml