1. Unique Features of Home Health Care: Ethics of Everyday Living Philip Boyle, Ph.D. Vice President. Mission & Ethics Catholic Health East

2. What I am going to do today? Identify unique moral ecology of home care Identify unique moral ecology of home care Step child of healthcare ethicsStep 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

3. What is unique about home health care? What moral hazards emerge more 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 ecology The moral ecology The setting: their homeThe setting: their home The familyThe family The disabled clientThe disabled client CoercionCoercion SafetySafety BoundariesBoundaries

4. The Moral Ecology The setting Home-- issues about negotiating personal territory Home-- issues about negotiating personal territory 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 arounds Over years developed work arounds Extended communityExtended community

5. The Moral Ecology The clients: Not much different than LTC, fiercely independent Not much different than LTC, fiercely independent Impaired sensory, cognitive, & functional Impaired sensory, cognitive, & functional Limit autonomy Limit autonomy Subtle clotting and vulnerabilitySubtle clotting and vulnerability Less contact mean less clinical referenceLess contact mean less clinical reference More woman, limited means, power differential & vulnerable positions More woman, limited means, power differential & vulnerable positions Stigma: age as disability—unable or less than capacitated Stigma: age as disability—unable or less than capacitated

6. The Moral Ecology Family informal caregivers Mainly woman Mainly woman Need family to cooperate Need family to cooperate Long-standing family dynamics Long-standing family dynamics Family’s feelings about home care Family’s feelings about home care Exhaustion & frustrationExhaustion & frustration

7. The Moral Ecology 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 unclear Professional 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, accepting or giving gifts Self disclosure, prying, identifying with client, accepting or giving gifts Coercion— behavioral limits Coercion— behavioral limits Provider no longer the “expert”--power Provider no longer the “expert”--power

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

9. Focus of concern Caring Caring Dignity Dignity Flourishing Flourishing

10. Mary, 82-year-old with mild dementia, Mary, 82-year-old with mild dementia, Receives daily care, including bathing, dressing, and toileting Receives daily care, including bathing, dressing, and toileting Wanda, 27-year-old single mother with three children, ambivalent about her visits Wanda, 27-year-old single mother with three children, ambivalent about her visits Mary treats Wanda as the child she never had, and occasionally she gives Wanda tokens of appreciation, including chocolates for Wanda’s children, tips, and objects Wanda knows are special to Mary. Mary treats Wanda as the child she never had, and occasionally she gives Wanda tokens of appreciation, including chocolates for Wanda’s children, tips, and objects Wanda knows are special to Mary. Mary is cranky when Wanda is running late because of child care issues. Mary often barks demeaning orders about how she wants things done.Mary is cranky when Wanda is running late because of child care issues. Mary often barks demeaning orders about how she wants things done. Wanda overhears Mary’s husband, John, making cruel remarks to his wife also observed threatening gestures. Wanda overhears Mary’s husband, John, making cruel remarks to his wife also observed threatening gestures. Wanda noted bruises on Mary’s arms and head, supposedly the result of Mary’s fall. Wanda noted bruises on Mary’s arms and head, supposedly the result of Mary’s fall. Wanda is suspicious about the explanation for those injuries, and is increasingly worried about Mary’s safety, she is hesitant to speak to anyone at her agency for fear it could jeopardize her relationship with Mary and John and possibly result in Mary being placed in a nursing facility. Wanda is suspicious about the explanation for those injuries, and is increasingly worried about Mary’s safety, she is hesitant to speak to anyone at her agency for fear it could jeopardize her relationship with Mary and John and possibly result in Mary being placed in a nursing facility.

11. Moral problems Setting Setting Client Client Care givers Care givers InformalInformal FormalFormal Who is the primary client? Who is the primary client? Boundaries Boundaries Obligations to report Obligations to report Treatment of Wanda Treatment of Wanda Humane manipulation Humane manipulation

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

13. Home care Ronald and Andrea married 50 yrs Ronald and Andrea married 50 yrs Residents in independent living center Residents in independent living center Andrea has stoke & paraplegia Andrea 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 change Agency sends new RN, but no change Wound gets worse Wound gets worse Home health agency considers transfer? Home health agency considers transfer? Andrea, passive deferring to husband, rarely speaks Andrea, passive deferring to husband, rarely speaks The RN describes Ronald as harsh and quick to anger The RN describes Ronald as harsh and quick to anger

14. Home care What is the ethical problem? What is the ethical problem? Would it be framed differently if told from the perspectives of each party involved?Would it be framed differently if told from the perspectives of each party involved? Andrea Andrea Ronald Ronald RN RN Agency Agency Independent living facility Independent living facility

15. Home care What values are important to preserve? What values are important to preserve?

16. Home care What facts are needed before discharging Andrea? What facts are needed before discharging Andrea?

17. Home care What actions might respect each person involved in caring for Andrea? What actions might respect each person involved in caring for Andrea?

18. Home care What kind of care plan ought to be developed? What kind of care plan ought to be developed? Think of aims that go beyond the immediate need of wound careThink of aims that go beyond the immediate need of wound care

19. Home care Describe immediate and long term actions you would take? Describe immediate and long term actions you would take?

20. When should 3 rd parties intervene? Required by law Required by law Serious harm Serious harm Likely to happen Likely to happen Alternatives have been exhausted Alternatives have been exhausted Intervention will stop the harm Intervention will stop the harm

21. Home care One moral problem: eliciting family care giving and protecting client One moral problem: eliciting family care giving and protecting client Each professional has different perceptions and thresholds of what we count as abuse/neglect. Each professional has different perceptions and thresholds of what we count as abuse/neglect. Families need to be reminded that there is an advocate-you Families need to be reminded that there is an advocate-you Abuse needs to be at least reported internally and discussed Abuse needs to be at least reported internally and discussed State regulations of what counts as abuse and what is reportable needs to be reviewed frequently State regulations of what counts as abuse and what is reportable needs to be reviewed frequently

22. Conclusions Ethics of everyday living Ethics of everyday living Attention to particularities Attention to particularities Focus: caring, listening, respecting… Focus: caring, listening, respecting…

23. WWW.CHE.ORG/ETHICS