Unique Features of Home Unique Features of Home Health Care:Health Care:

Ethics of Everyday LivingEthics of Everyday Living

Philip Boyle, Ph.D.Philip Boyle, Ph.D.Vice 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• Step child of healthcare ethics Step child of healthcare ethics • New way of seeing: virtues not dilemmasNew way of seeing: virtues not dilemmas• Flourishing even in declineFlourishing even in decline

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

What is unique about home What is unique about home health care?health care?

What moral hazards emerge more What moral hazards emerge more predominately in home health care?predominately in home health care?Capacity, informed consent, advance directives?Capacity, informed consent, advance directives?Termination of treatment?Termination of treatment?Truth-telling, confidentiality?Truth-telling, confidentiality?The moral ecologyThe moral ecology

• The setting: their homeThe setting: their home• The familyThe family• The disabled clientThe disabled client• CoercionCoercion• SafetySafety• BoundariesBoundaries

The Moral EcologyThe Moral EcologyThe settingThe setting Home-- issues about negotiating personal Home-- issues about negotiating personal

territoryterritory• A client’s home is her castleA client’s home is her castle• Lack of institutional controlLack of institutional control• Family dynamicsFamily dynamics• Not “safety proofed”Not “safety proofed”• Client familiar with environmentClient familiar with environment

Over years developed work aroundsOver years developed work arounds

• Extended communityExtended community

The Moral EcologyThe Moral EcologyThe clients: The clients: Not much different than LTC, fiercely independentNot much different than LTC, fiercely independent Impaired sensory, cognitive, & functionalImpaired sensory, cognitive, & functional Limit autonomyLimit autonomy

• Subtle clotting and vulnerability Subtle clotting and vulnerability • Less contact mean less clinical referenceLess contact mean less clinical reference

More woman, limited means, power differential & More woman, limited means, power differential & vulnerable positionsvulnerable positions

Stigma: age as disability—unable or less than Stigma: age as disability—unable or less than capacitated capacitated

The Moral EcologyThe Moral Ecology

Family informal caregiversFamily informal caregivers Mainly womanMainly woman Need family to cooperate Need family to cooperate Long-standing family dynamicsLong-standing family dynamics Family’s feelings about home care Family’s feelings about home care

• Exhaustion & frustration Exhaustion & frustration

The Moral EcologyThe Moral EcologyThe staff—different professional training The staff—different professional training Like LTC: not as skilled Like LTC: not as skilled High percent of aids High percent of aids 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, prying, identifying with client, Self disclosure, prying, identifying with client, accepting or giving giftsaccepting or giving gifts

Coercion— behavioral limitsCoercion— behavioral limits Provider no longer the “expert”--power Provider no longer the “expert”--power

Loves’ KnowledgeLoves’ Knowledge ““Philosophy has often seen itself as a way Philosophy has often seen itself as a way

of transcending the merely human, of of transcending the merely human, of giving the human being new and more giving the human being new and more godlike set of activities and attachments. godlike set of activities and attachments. The alternative—fine attention to the The alternative—fine attention to the particulars—sees philosophy as a way of particulars—sees philosophy as a way of being human and speaking humanly. being human and speaking humanly. That suggestion will only appeal to those That suggestion will only appeal to those who actually want to be human, who who actually want to be human, who want to see human life as it is, with its want to see human life as it is, with its surprises and connections, its pains and surprises and connections, its pains and sudden joys, a story worth embracing. sudden joys, a story worth embracing.

Focus of concernFocus of concern

CaringCaring

DignityDignity

Flourishing Flourishing

Mary, 82-year-old with mild dementia,Mary, 82-year-old with mild dementia, Receives daily care, including bathing, dressing, and Receives daily care, including bathing, dressing, and

toileting toileting Wanda, 27-year-old single mother with three children, Wanda, 27-year-old single mother with three children,

ambivalent about her visits ambivalent about her visits • Mary treats Wanda as the child she never had, and Mary treats Wanda as the child she never had, and

occasionally she gives Wanda tokens of appreciation, including occasionally she gives Wanda tokens of appreciation, including chocolates for Wanda’s children, tips, and objects Wanda chocolates for Wanda’s children, tips, and objects Wanda knows are special to Mary. knows are special to Mary.

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

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

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

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

Moral problemsMoral problems

SettingSetting ClientClient Care giversCare givers

• InformalInformal• FormalFormal

Who is the primary client?Who is the primary client? BoundariesBoundaries Obligations to reportObligations to report Treatment of WandaTreatment of Wanda

Humane manipulationHumane manipulation

Behavioral Management Behavioral Management The limits of behavioral management?The limits of behavioral management? Difference among?Difference among?

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

Is persuasion by definition wrong or just Is persuasion by definition wrong or just the type and degree?the type and degree?

Home careHome care Ronald and Andrea married 50 yrs Ronald and Andrea married 50 yrs Residents in independent living centerResidents in independent living center Andrea has stoke & paraplegiaAndrea has stoke & paraplegia

• Developed a stage 4 pressure soreDeveloped a stage 4 pressure sore Ronald assumed primary responsibility for wound care Ronald assumed primary responsibility for wound care Home care changes Foley catheter once a month Home care changes Foley catheter once a month Ronald not following MD orders Ronald not following MD orders

• Using aggressive and harmful cleaning 4X a dayUsing aggressive and harmful cleaning 4X a day Agency sends new RN, but no changeAgency sends new RN, but no change Wound gets worseWound gets worse Home health agency considers transfer? Home health agency considers transfer? Andrea, passive deferring to husband, rarely speaksAndrea, passive deferring to husband, rarely speaks The RN describes Ronald as harsh and quick to angerThe RN describes Ronald as harsh and quick to anger

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?

AndreaAndrea RonaldRonald RNRN AgencyAgency Independent living facility Independent living facility

Home careHome care What values are important to preserve?What values are important to preserve?

Home careHome care What facts are needed before discharging What facts are needed before discharging

Andrea?Andrea?

Home careHome care What actions might respect each person What actions might respect each person

involved in caring for Andrea?involved in caring for Andrea?

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 wound careneed of wound care

Home careHome care Describe immediate and long term Describe immediate and long term

actions you would take? actions you would take?

When should 3When should 3rdrd parties intervene? parties intervene?

Required by lawRequired by law Serious harmSerious harm Likely to happenLikely to happen Alternatives have been exhaustedAlternatives have been exhausted Intervention will stop the harmIntervention will stop the harm

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

ConclusionsConclusions

Ethics of everyday livingEthics of everyday living Attention to particularitiesAttention to particularities Focus: caring, listening, respecting…Focus: caring, listening, respecting…

WWW.CHE.ORG/ETHICSWWW.CHE.ORG/ETHICS