Home Health Care :Home Health Care : Ethics of Everyday LivingEthics of Everyday Living

Philip Boyle, PhDPhilip Boyle, PhDVice President. Mission & EthicsVice President. Mission & Ethics

Catholic Health EastCatholic Health East

What I am going to do today?What I am going to do today? Identify unique moral ecology of home Identify unique moral ecology of home

carecare• Ethics of caring Ethics of caring • Caring practices not dilemmasCaring practices not dilemmas• Flourishing even in declineFlourishing even in decline

Propose a method to identify Propose a method to identify Suggest guideposts Suggest guideposts Identify best practices Identify best practices

The Moral EcologyThe Moral EcologyThe clientsThe clients Impaired sensory, cognitive, & functionalImpaired sensory, cognitive, & functional Limit autonomyLimit autonomy

• Subtle clotting and vulnerability Subtle clotting and vulnerability More woman, limited means, power More woman, limited means, power

differential & vulnerable positionsdifferential & vulnerable positions Stigma: Stigma:

• Age as disability—unable or less than Age as disability—unable or less than capacitatedcapacitated

• Attendance =Less than capacitated Attendance =Less than capacitated • Adult day care = baby sittingAdult day care = baby sitting

The Moral EcologyThe Moral EcologyThe staff—different professional training The staff—different professional training Professional boundaries unclearProfessional boundaries unclear

• Less supervision & mentoring in the fieldLess supervision & mentoring in the field• Becoming intimate with the clientBecoming intimate with the client

Self disclosure, identifying with client, accepting Self disclosure, identifying with client, accepting or giving giftsor giving gifts

Coercion— behavioral limitsCoercion— behavioral limits

Provider no longer the “expert”--power Provider no longer the “expert”--power

The Moral EcologyThe Moral Ecology

Family informal caregivers in home careFamily informal caregivers in home care Mainly womanMainly woman Need family to cooperate Need family to cooperate Family feelings about home care Family feelings about home care

• Exhaustion & frustration Exhaustion & frustration

The Moral EcologyThe Moral EcologyThe setting of home careThe setting of home care

Home-- issues about negotiating personal Home-- issues about negotiating personal territoryterritory

• A client’s home is her castleA client’s home is her castle

The Moral EcologyThe Moral EcologyExternalities: law, regulators, dept of agingExternalities: law, regulators, dept of aging Regulations focus on the quality & safety Regulations focus on the quality & safety Regulation often misinterpreted by Regulation often misinterpreted by

outside inspectors and breed a more outside inspectors and breed a more restrictive and severe interpretations of restrictive and severe interpretations of standards to ensure safetystandards to ensure safety

Focus of concernFocus of concern CaringCaring

DignityDignity

Flourishing Flourishing

Ethics of Care Ethics of Care Pull of responsibility, not demand of Pull of responsibility, not demand of

obligationobligation Attention to particularsAttention to particulars Focus on who gives care/power Focus on who gives care/power

differentialdifferential Alleviate pain of aloneness, of Alleviate pain of aloneness, of

vulnerability, of fear, of vulnerability, of fear, of abandonment, of illness, of dyingabandonment, of illness, of dying

Case of Mary Case of Mary Mary, 82-year-old with mild dementia,Mary, 82-year-old with mild dementia,

Receives daily care, including bathing, dressing, Receives daily care, including bathing, dressing, and toileting and toileting

Wanda, 27-year-old single mother with three Wanda, 27-year-old single mother with three children, ambivalent about her visits children, ambivalent about her visits

• Mary treats Wanda as the child she never had, Mary treats Wanda as the child she never had, and occasionally she gives Wanda tokens of and occasionally she gives Wanda tokens of appreciation, including chocolates for Wanda’s appreciation, including chocolates for Wanda’s children, tips, and objects Wanda knows are children, tips, and objects Wanda knows are special to Mary. special to Mary.

• Mary is cranky when Wanda is running late Mary is cranky when Wanda is running late because of child care issues. Mary often barks because of child care issues. Mary often barks demeaning orders about how she wants things demeaning orders about how she wants things done. done.

Case of Mary Case of Mary

Wanda overhears Mary’s husband, John, making Wanda overhears Mary’s husband, John, making cruel remarks to his wife also observed threatening cruel remarks to his wife also observed threatening gestures. gestures.

Wanda noted bruises on Mary’s arms and head, Wanda noted bruises on Mary’s arms and head, supposedly the result of Mary’s fall. supposedly the result of Mary’s fall.

Wanda is suspicious about the explanation for Wanda is suspicious about the explanation for those injuries, and is increasingly worried about those injuries, and is increasingly worried about Mary’s safety, she is hesitant to speak to anyone at Mary’s safety, she is hesitant to speak to anyone at her agency for fear it could jeopardize her her agency for fear it could jeopardize her relationship with Mary and John and possibly result relationship with Mary and John and possibly result in Mary being placed in a nursing facility.in Mary being placed in a nursing facility.

Home CareHome Care

What is the ethical problem? What is the ethical problem?

• Would it be framed differently if told from the Would it be framed differently if told from the perspectives of each party involved? perspectives of each party involved?

Home CareHome Care

What values are important to preserve?What values are important to preserve?

Home CareHome Care What facts are needed before proceeding What facts are needed before proceeding

Mary?Mary?

Home CareHome Care

What actions might respect each person What actions might respect each person involved in caring for Mary?involved in caring for Mary?

Home CareHome Care

What kind of care plan ought to be What kind of care plan ought to be developed? developed?

• Think of aims that go beyond the immediate Think of aims that go beyond the immediate need of her confusionneed of her confusion

Behavioral Management Behavioral Management What are the limits of behavioral What are the limits of behavioral

management?management? Difference among?Difference among?

• Humane manipulationHumane manipulation• Rationale persuasionRationale persuasion• CajolingCajoling• InducementsInducements• ThreatsThreats• CoercionCoercion

What amount of harm should What amount of harm should warrant action?warrant action?

Serious harmSerious harm

Likely to happenLikely to happen

Alternatives have been exhaustedAlternatives have been exhausted

Intervention will stop the harmIntervention will stop the harm

The Case of WarrenThe Case of Warren Disabled semi-obese 60 yr-old with Disabled semi-obese 60 yr-old with

drinking problemdrinking problem Rural settingRural setting Criminal historyCriminal history Poor hygiene-refuses some bathingPoor hygiene-refuses some bathing Dysfunctional marital relationshipDysfunctional marital relationship LSW discovers he has a gun “for LSW discovers he has a gun “for

protection”protection”

The Case of Ms. TThe Case of Ms. T Living alone in apartment with 60 Living alone in apartment with 60

stuffed animals and infestationstuffed animals and infestation Fire riskFire risk Nearly unable for self careNearly unable for self care LSW presses for extermination and LSW presses for extermination and

animal removalanimal removal

Home careHome care

One moral problem: eliciting family care giving One moral problem: eliciting family care giving and protecting client and protecting client

Each professional has different perceptions and Each professional has different perceptions and thresholds of what we count as abuse/neglect.thresholds of what we count as abuse/neglect.

Families need to be reminded that there is an Families need to be reminded that there is an advocate-youadvocate-you

Abuse needs to be at least reported internally Abuse needs to be at least reported internally and discussedand discussed

State regulations of what counts as abuse and State regulations of what counts as abuse and what is reportable needs to be reviewed what is reportable needs to be reviewed frequentlyfrequently

Guidelines for Caring PracticesGuidelines for Caring Practices Greet with surnameGreet with surname Introduce your self with a storyIntroduce your self with a story Create a sense of equalityCreate a sense of equality Put yourself in their positionPut yourself in their position Honor privacyHonor privacy Create opportunity to find out what Create opportunity to find out what

actions they valueactions they value Understand client’s habitsUnderstand client’s habits Talk normallyTalk normally

Guidelines for Caring PracticesGuidelines for Caring Practices Discover that they want you to let Discover that they want you to let

others knowothers know Promote adult choicesPromote adult choices Learn about past & hopesLearn about past & hopes Be aware of invasive elements of Be aware of invasive elements of

carecare What supports client’s self-worthWhat supports client’s self-worth What is you way of understanding a What is you way of understanding a

problem?problem?

ConclusionsConclusions Ethics of everyday livingEthics of everyday living

Attention to particularitiesAttention to particularities

Focus: caring, listening, respecting…Focus: caring, listening, respecting…

Need separate mechanisms—not Need separate mechanisms—not acute care ethics committeesacute care ethics committees