Ethics in Long-term Care:Ethics in Long-term Care:The Ethics of Everyday The Ethics of Everyday

LivingLiving

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 the moral ecology of continuing care Identify the moral ecology of continuing care Contrast it to acute careContrast it to acute care Highlight the moral issues that might go Highlight the moral issues that might go

unnoticedunnoticed See acute care with new eyesSee acute care with new eyes Suggest what principles and guidepost should Suggest what principles and guidepost should

caregiver appeal tocaregiver appeal to Identify some best practices that address these Identify some best practices that address these

issuesissues

What is ethically unique in long-What is ethically unique in long-term care settings?term care settings?

Step child of healthcare ethics Step child of healthcare ethics New way of seeing with a focus on New way of seeing with a focus on

virtues not dilemmasvirtues not dilemmas Understanding the moral ecologyUnderstanding the moral ecology Focus on particularitiesFocus on particularities Flourishing even in declineFlourishing even in decline Different mechanisms to addressDifferent mechanisms to address

What is unique in LTCWhat is unique in LTCRange of issuesRange of issues Informed consent/capacity/directivesInformed consent/capacity/directives End-of-lifeEnd-of-life Ethics of everyday livingEthics of everyday living

• PrivacyPrivacy• Difficult patientsDifficult patients• Coercion & Restraints Coercion & Restraints • BoundariesBoundaries• Sexual intimacySexual intimacy

The Moral EcologyThe Moral EcologyThe residentsThe residents Impaired senses—cognitive and functional—Impaired senses—cognitive and functional—

they cannot do things for themselvesthey cannot do things for themselves Problems for the exercise of autonomyProblems for the exercise of autonomy Autonomy—the subtle clotting and Autonomy—the subtle clotting and

vulnerability of the elderly or persons with vulnerability of the elderly or persons with some form of diminished capacitysome form of diminished capacity

Higher portion of woman with limited means Higher portion of woman with limited means which creates a power differential ripe for which creates a power differential ripe for being placed in vulnerable positionsbeing placed in vulnerable positions

Stigma: view elderly as disability—unable or Stigma: view elderly as disability—unable or less than capacitated less than capacitated

1 in 3 die in year 1; average 3 years1 in 3 die in year 1; average 3 years

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

• Activities of daily living = baby sittingActivities of daily living = baby sitting

The Moral EcologyThe Moral EcologyThe staff—different professional training The staff—different professional training Upwards of 70% nurses aidsUpwards of 70% nurses aids Professional boundaries unclearProfessional boundaries unclear

• Less professional mentoringLess professional mentoring• 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 Cultural/ethics difference with residentCultural/ethics difference with resident Provider no longer the “expert”--power Provider no longer the “expert”--power

The Moral EcologyThe Moral Ecology

The family & care giversThe family & care givers Mainly womanMainly woman When the resident is in long-term care the When the resident is in long-term care the

family has feeling of relief from the care but family has feeling of relief from the care but perhaps a sense of guilt that they were unable perhaps a sense of guilt that they were unable to care enough, and the potential projectionto care enough, and the potential projection

Family overprotection of resident Family overprotection of resident

The Moral EcologyThe Moral EcologyPublic perception of long-term carePublic perception of long-term care Our feeling about long-term care facilityOur feeling about long-term care facility We are happy to be outside themWe are happy to be outside them We are sad about people who are in there—we We are sad about people who are in there—we

see how people’s lives are diminishedsee how people’s lives are diminished We feel guilty when we have to put our family We feel guilty when we have to put our family

members in them. Many middle-aged persons members in them. Many middle-aged persons sum it up by saying” I pray I don’t get like that. sum it up by saying” I pray I don’t get like that. Or don’t ever let me get that way, or don’t ever Or don’t ever let me get that way, or don’t ever put me away in a home, or let me die before put me away in a home, or let me die before you put me thereyou put me there

Two out of three of us by the time we are 80 Two out of three of us by the time we are 80 will be in a nursing home of some form of will be in a nursing home of some form of assisted living.assisted living.

It is an issue that we would rather just ignoreIt is an issue that we would rather just ignore

The Moral EcologyThe Moral EcologyThe settingThe setting LTC “home”LTC “home” Routines. Efficiency dictates people rise, Routines. Efficiency dictates people rise,

eat, bath, and have fun. The point of eat, bath, and have fun. The point of looking at routines is that they foster, if looking at routines is that they foster, if not exacerbate behavior and patterns of not exacerbate behavior and patterns of treatment that may go unnoticedtreatment that may go unnoticed

Institutions tend to be noisy because of Institutions tend to be noisy because of those who are hearing impairedthose who are hearing impaired

When it is a home, there is issues about When it is a home, there is issues about negotiating personal territory.negotiating personal territory.

The Moral EcologyThe Moral EcologyExternalities: the law, regulators, department on Externalities: the law, regulators, department on

agingaging Governmental polices and regulations for long-Governmental polices and regulations for long-

term care are often more adversarial as term care are often more adversarial as compared to acute care because, in past, the compared to acute care because, in past, the public image of the nursing homes industry’s public image of the nursing homes industry’s former scandalous behavior. Many of these former scandalous behavior. Many of these regulations focus on the quality of care and regulations focus on the quality of care and safety of residents and environment. However, safety of residents and environment. However, these regulation are often misinterpreted by these regulation are often misinterpreted by outside inspectors and consequently breed a outside inspectors and consequently breed a more restrictive and severe interpretations of more restrictive and severe interpretations of standards to ensure safetystandards to ensure safety

What kind of place do we want What kind of place do we want continuing care to be?continuing care to be?

Momento Mori –Momento Mori –Muriel SparksMuriel Sparks Anonymous caller “Remember you must Anonymous caller “Remember you must

die”die” ““My dear sir, at this point I have forgotten My dear sir, at this point I have forgotten

many things, but that is not one of them.”many things, but that is not one of them.” Glass half empty—fearGlass half empty—fear Glass half full—trying to live to fullestGlass half full—trying to live to fullest Flourishing in declineFlourishing in decline

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.

The importance of particularitiesThe importance of particularities This in no way means not wishing to This in no way means not wishing to

make life better than it is. It seems make life better than it is. It seems plausible that in the pursuit of human self plausible that in the pursuit of human self understanding and of a society that can understanding and of a society that can realize itself more fully—the imagination realize itself more fully—the imagination and terms of the literary artists are and terms of the literary artists are indispensable guides; as James suggests, indispensable guides; as James suggests, “angels in the fallen world, alert in “angels in the fallen world, alert in perception and sympathy, lucidly perception and sympathy, lucidly bewildered, surprised by the intelligence bewildered, surprised by the intelligence of love.” of love.” Martha NussbaumMartha Nussbaum

Focus of concernFocus of concern CaringCaring

DignityDignity

Flourishing Flourishing

The Case of Please Pass the The Case of Please Pass the Butter CookiesButter Cookies

Jewish-owned nursing home has strict Kosher laws Jewish-owned nursing home has strict Kosher laws that are creating problems for the residents. The that are creating problems for the residents. The home’s administrator has made it clear that only home’s administrator has made it clear that only Kosher meals will be served in the building, and in Kosher meals will be served in the building, and in deference to the institutions, the state health deference to the institutions, the state health department has placed a sign at the front door department has placed a sign at the front door indicating that non-Kosher food is prohibited on indicating that non-Kosher food is prohibited on the premises. Residents, upon admission are the premises. Residents, upon admission are informed of this policy. informed of this policy.

Residents: 10 % observant Jews Residents: 10 % observant Jews 60 % non-observant Jews60 % non-observant Jews 30 % Catholics & Protestants30 % Catholics & Protestants

Mary, a bed-ridden Irishwoman, asked the Mary, a bed-ridden Irishwoman, asked the nurse to bring her the box of butter coolies she nurse to bring her the box of butter coolies she kept on the top shelf of her closet. The nurse kept on the top shelf of her closet. The nurse confiscated them on the grounds that non-confiscated them on the grounds that non-Kosher food is forbidden within the institutions. Kosher food is forbidden within the institutions. Exercising further control, the nurse took Exercising further control, the nurse took chocolate candy she found there. Her chocolate candy she found there. Her colleagues have intercepted pizza deliveries as colleagues have intercepted pizza deliveries as well. The staff brace themselves for the annual well. The staff brace themselves for the annual clash over Passover, as residents celebrate clash over Passover, as residents celebrate Easter lobby to be allowed hot crossed buns Easter lobby to be allowed hot crossed buns

The residents are complaining that the The residents are complaining that the prohibition against non-Kosher food infringes on prohibition against non-Kosher food infringes on their civil rights.their civil rights.

Quick FramingQuick Framing Did Mary have a choice of institutions when Did Mary have a choice of institutions when

admitted? If not, is she under any obligation admitted? If not, is she under any obligation and follow the requirement?and follow the requirement?

Or, was she told upon admission that her food Or, was she told upon admission that her food choices would be restricted? If not, this might choices would be restricted? If not, this might be a matter of the PSDA & she can ignore it.be a matter of the PSDA & she can ignore it.

Or, is this really Jewish law? Some might make Or, is this really Jewish law? Some might make and end run and dispute the religious facts.and end run and dispute the religious facts.

Are there any exceptions to the application of Are there any exceptions to the application of this rule in institutional practice?this rule in institutional practice?

Avoid the question? Avoid the question?

Moral EcologyMoral Ecology The place of religion in institutionsThe place of religion in institutions The resident—Mary with functional The resident—Mary with functional

impairment and power differential—impairment and power differential—actions based on moral weight of actions based on moral weight of religious mandate, or she won’t fight religious mandate, or she won’t fight back?back?

The staff—motivation? Consistency or The staff—motivation? Consistency or punishment?punishment?

Regulators—misinterpretation that does Regulators—misinterpretation that does not account for gradation in teaching? not account for gradation in teaching?

Routines—easier to ban all than consider Routines—easier to ban all than consider gradations?gradations?

Issue likely to be missedIssue likely to be missed Admin. is CatholicAdmin. is Catholic Only observant Jews enforce policyOnly observant Jews enforce policy Hot cross bun during Holy Week—Hot cross bun during Holy Week—

how much accommodation?how much accommodation? Institution’s religious principles?Institution’s religious principles? Integrity preserving compromises?Integrity preserving compromises?

Case: What’s in bounds?Case: What’s in bounds? Jane, 92 cognitively intact Jane, 92 cognitively intact Ester Jamaican born, single mom of 3Ester Jamaican born, single mom of 3 Works 2 job abused by boyfriendWorks 2 job abused by boyfriend Jane sees Ester a confident and child Jane sees Ester a confident and child

she never had; give children monetary she never had; give children monetary gift because of strugglegift because of struggle

Ester looks to Jane a wisdom figureEster looks to Jane a wisdom figure Ester asks Jane for a loan to help by a Ester asks Jane for a loan to help by a

used car so she can get to workused car so she can get to work

Discussion How would you frame the issues that Jane & Ester

raises? Are there alternative ways of framing this issue?

What values are important to preserve in this situation?

What do you think Jane’s & Ester’s behavior means?

What might you do for Jane to help her feel recognized? How can you show respect to Jane in her particularities?

What are the most important ethical concerns that this relationship suggests?

Boundary IssuesBoundary Issues • What do we mean when we talk about What do we mean when we talk about

boundaries? boundaries? • How do we know when we have crossed them?How do we know when we have crossed them?• What can we do to reduce the number of What can we do to reduce the number of

boundary crossing?boundary crossing?• Boundaries between residents and Boundaries between residents and

professionalsprofessionals• The professional:The professional:

discloses too much personal informationdiscloses too much personal information digs for information that is not necessarydigs for information that is not necessary becomes friendbecomes friend takes gifts takes gifts

Where do boundaries come from?Where do boundaries come from?

Common human moralityCommon human morality

Policies/proceduresPolicies/procedures

Professional norms/ quality practiceProfessional norms/ quality practice

Mission and core valuesMission and core values

Practical ResponsesPractical Responses MentoringMentoring

• Exploring rules of the professionExploring rules of the profession• Privately advising when crossedPrivately advising when crossed• Explicitly connecting actions and valuesExplicitly connecting actions and values• Advise the “publicity test”Advise the “publicity test”• Advise the “stink test”Advise the “stink test”• Professional distanceProfessional distance

Reviewing job descriptionsReviewing job descriptions• Limits of discretion & controlLimits of discretion & control• Reviewing institution’s cultural expectationsReviewing institution’s cultural expectations

DIFFICULT RESIDENT Dr. Black 85 Alzheimer’s dementia leaves him quite confused Able to make

some wishes known. Otherwise health is relatively good. Moments of happiness, sadness and boredom Successful obstetrician-gynecologist. “this was a rough night; I delivered four

babies and so didn’t get any sleep” No one visits him. Wife died 10 years ago, no children. Hard time reading . Lately, just staring into space. New and unsettling behavior—he gets frustrated and starts banging on

anything that is in sight. Residents complain . His behavior at meals-- refuses to eat or he begins to throw food on the ground

—and sometimes at other residents or staff. Happiest on the mornings that he reports how many babies he delivered the

night before. Staff is at their wits end and the residents are getting frightened at his

outbursts.

Discussion How would you frame the issue that Mr. Black raises?

Are there alternative ways of framing this issue? What values are important to preserve in this situation? What do you think Mr. Black’s behavior means to him? What might you do for Dr. Black to help him feel

recognized? How can you show respect to Dr. Black in his particularities?

How do Dr. Black’s actions affect others and why is that ethically important?

What are the most important ethical concerns that Dr. Black’s situation suggests?

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?

ConclusionConclusion Ethics of everyday livingEthics of everyday living What bring flourishing in decline?What bring flourishing in decline? Attention to particularsAttention to particulars