Ethics in Long-term Care: The Ethics of Everyday Living Philip Boyle, Ph.D. Vice President, Mission & Ethics Catholic Health East

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 care Contrast it to acute care Highlight the moral issues that might go unnoticed Highlight the moral issues that might go unnoticed See acute care with new eyes See acute care with new eyes Suggest what principles and guidepost should caregiver appeal to Suggest what principles and guidepost should caregiver appeal to Identify some best practices that address these issues Identify some best practices that address these issues

What is ethically unique in long- term care settings? Step child of healthcare ethics Step child of healthcare ethics New way of seeing with a focus on virtues not dilemmas New way of seeing with a focus on virtues not dilemmas Understanding the moral ecology Understanding the moral ecology Focus on particularities Focus on particularities Flourishing even in decline Flourishing even in decline Different mechanisms to address Different mechanisms to address

What is unique in LTC Range of issues Informed consent/capacity/directives Informed consent/capacity/directives End-of-life End-of-life Ethics of everyday living Ethics of everyday living PrivacyPrivacy Difficult patientsDifficult patients Coercion & RestraintsCoercion & Restraints BoundariesBoundaries Sexual intimacySexual intimacy

The Moral Ecology The residents Impaired senses—cognitive and functional— they cannot do things for themselves Impaired senses—cognitive and functional— they cannot do things for themselves Problems for the exercise of autonomy Problems for the exercise of autonomy Autonomy—the subtle clotting and vulnerability of the elderly or persons with some form of diminished capacity Autonomy—the subtle clotting and vulnerability of the elderly or persons with some form of diminished capacity Higher portion of woman with limited means which creates a power differential ripe for being placed in vulnerable positions Higher portion of woman with limited means which creates a power differential ripe for being placed in vulnerable positions Stigma: view elderly as disability—unable or less than capacitated Stigma: view elderly as disability—unable or less than capacitated 1 in 3 die in year 1; average 3 years 1 in 3 die in year 1; average 3 years

The Moral Ecology The clients Impaired sensory, cognitive, & functional Impaired sensory, cognitive, & functional Limit autonomy Limit autonomy Subtle clotting and vulnerabilitySubtle clotting and vulnerability More woman, limited means, power differential & vulnerable positions More woman, limited means, power differential & vulnerable positions Stigma: Stigma: Age as disability—unable or less than capacitatedAge as disability—unable or less than capacitated Activities of daily living = baby sittingActivities of daily living = baby sitting

The Moral Ecology The staff—different professional training Upwards of 70% nurses aids Professional boundaries unclear Professional boundaries unclear Less professional mentoringLess professional mentoring Becoming intimate with the clientBecoming intimate with the client Self disclosure, identifying with client, accepting or giving gifts Self disclosure, identifying with client, accepting or giving gifts Coercion— behavioral limits Coercion— behavioral limits Cultural/ethics difference with resident Cultural/ethics difference with resident Provider no longer the “expert”--power Provider no longer the “expert”--power

The Moral Ecology The family & care givers Mainly woman Mainly woman When the resident is in long-term care the family has feeling of relief from the care but perhaps a sense of guilt that they were unable to care enough, and the potential projection When the resident is in long-term care the family has feeling of relief from the care but perhaps a sense of guilt that they were unable to care enough, and the potential projection Family overprotection of resident Family overprotection of resident

The Moral Ecology Public perception of long-term care Our feeling about long-term care facility Our feeling about long-term care facility We are happy to be outside them We are happy to be outside them We are sad about people who are in there—we see how people’s lives are diminished We are sad about people who are in there—we see how people’s lives are diminished We feel guilty when we have to put our family members in them. Many middle-aged persons 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 put me away in a home, or let me die before you put me there We feel guilty when we have to put our family members in them. Many middle-aged persons 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 put me away in a home, or let me die before you put me there Two out of three of us by the time we are 80 will be in a nursing home of some form of assisted living. Two out of three of us by the time we are 80 will be in a nursing home of some form of assisted living. It is an issue that we would rather just ignore It is an issue that we would rather just ignore

The Moral Ecology The setting LTC “home” LTC “home” Routines. Efficiency dictates people rise, eat, bath, and have fun. The point of looking at routines is that they foster, if not exacerbate behavior and patterns of treatment that may go unnoticed Routines. Efficiency dictates people rise, eat, bath, and have fun. The point of looking at routines is that they foster, if not exacerbate behavior and patterns of treatment that may go unnoticed Institutions tend to be noisy because of those who are hearing impaired Institutions tend to be noisy because of those who are hearing impaired When it is a home, there is issues about negotiating personal territory. When it is a home, there is issues about negotiating personal territory.

The Moral Ecology Externalities: the law, regulators, department on aging Governmental polices and regulations for long- term care are often more adversarial as compared to acute care because, in past, the public image of the nursing homes industry’s former scandalous behavior. Many of these regulations focus on the quality of care and safety of residents and environment. However, these regulation are often misinterpreted by outside inspectors and consequently breed a more restrictive and severe interpretations of standards to ensure safety Governmental polices and regulations for long- term care are often more adversarial as compared to acute care because, in past, the public image of the nursing homes industry’s former scandalous behavior. Many of these regulations focus on the quality of care and safety of residents and environment. However, these regulation are often misinterpreted by outside inspectors and consequently breed a more restrictive and severe interpretations of standards to ensure safety

What kind of place do we want continuing care to be? Momento Mori –Muriel Sparks Momento Mori –Muriel Sparks Anonymous caller “Remember you must die” Anonymous caller “Remember you must die” “My dear sir, at this point I have forgotten many things, but that is not one of them.” “My dear sir, at this point I have forgotten many things, but that is not one of them.” Glass half empty—fear Glass half empty—fear Glass half full—trying to live to fullest Glass half full—trying to live to fullest Flourishing in decline Flourishing in decline

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.

The importance of particularities This in no way means not wishing to make life better than it is. It seems plausible that in the pursuit of human self understanding and of a society that can realize itself more fully—the imagination and terms of the literary artists are indispensable guides; as James suggests, “angels in the fallen world, alert in perception and sympathy, lucidly bewildered, surprised by the intelligence of love.” Martha Nussbaum This in no way means not wishing to make life better than it is. It seems plausible that in the pursuit of human self understanding and of a society that can realize itself more fully—the imagination and terms of the literary artists are indispensable guides; as James suggests, “angels in the fallen world, alert in perception and sympathy, lucidly bewildered, surprised by the intelligence of love.” Martha Nussbaum

Focus of concern Caring Caring Dignity Dignity Flourishing Flourishing

The Case of Please Pass the Butter Cookies Jewish-owned nursing home has strict Kosher laws that are creating problems for the residents. The home’s administrator has made it clear that only Kosher meals will be served in the building, and in deference to the institutions, the state health department has placed a sign at the front door indicating that non-Kosher food is prohibited on the premises. Residents, upon admission are informed of this policy. Residents: 10 % observant Jews Residents: 10 % observant Jews 60 % non-observant Jews 60 % non-observant Jews 30 % Catholics & Protestants 30 % Catholics & Protestants

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

Quick Framing Did Mary have a choice of institutions when admitted? If not, is she under any obligation and follow the requirement? Did Mary have a choice of institutions when admitted? If not, is she under any obligation and follow the requirement? Or, was she told upon admission that her food choices would be restricted? If not, this might be a matter of the PSDA & she can ignore it. Or, was she told upon admission that her food choices would be restricted? If not, this might be a matter of the PSDA & she can ignore it. Or, is this really Jewish law? Some might make and end run and dispute the religious facts. Or, is this really Jewish law? Some might make and end run and dispute the religious facts. Are there any exceptions to the application of this rule in institutional practice? Are there any exceptions to the application of this rule in institutional practice? Avoid the question? Avoid the question?

Moral Ecology The place of religion in institutions The place of religion in institutions The resident—Mary with functional impairment and power differential— actions based on moral weight of religious mandate, or she won’t fight back? The resident—Mary with functional impairment and power differential— actions based on moral weight of religious mandate, or she won’t fight back? The staff—motivation? Consistency or punishment? The staff—motivation? Consistency or punishment? Regulators—misinterpretation that does not account for gradation in teaching? Regulators—misinterpretation that does not account for gradation in teaching? Routines—easier to ban all than consider gradations? Routines—easier to ban all than consider gradations?

Issue likely to be missed Admin. is Catholic Admin. is Catholic Only observant Jews enforce policy Only observant Jews enforce policy Hot cross bun during Holy Week— how much accommodation? Hot cross bun during Holy Week— how much accommodation? Institution’s religious principles? Institution’s religious principles? Integrity preserving compromises? Integrity preserving compromises?

Case: What’s in bounds? Jane, 92 cognitively intact Jane, 92 cognitively intact Ester Jamaican born, single mom of 3 Ester Jamaican born, single mom of 3 Works 2 job abused by boyfriend Works 2 job abused by boyfriend Jane sees Ester a confident and child she never had; give children monetary gift because of struggle Jane sees Ester a confident and child she never had; give children monetary gift because of struggle Ester looks to Jane a wisdom figure Ester looks to Jane a wisdom figure Ester asks Jane for a loan to help by a used car so she can get to work Ester asks Jane for a loan to help by a used 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 Issues What do we mean when we talk about boundaries? What do we mean when we talk about 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 boundary crossing? What can we do to reduce the number of boundary crossing? Boundaries between residents and professionals Boundaries between residents and professionals The professional:The professional: discloses too much personal information discloses too much personal information digs for information that is not necessary digs for information that is not necessary becomes friend becomes friend takes gifts takes gifts

Where do boundaries come from? Common human morality Common human morality Policies/procedures Policies/procedures Professional norms/ quality practice Professional norms/ quality practice Mission and core values Mission and core values

Practical Responses Mentoring Mentoring 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 descriptions Reviewing 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 Practices Greet with surname Greet with surname Introduce your self with a story Introduce your self with a story Create a sense of equality Create a sense of equality Put yourself in their position Put yourself in their position Honor privacy Honor privacy Create opportunity to find out what actions they value Create opportunity to find out what actions they value Understand client’s habits Understand client’s habits Talk normally Talk normally

Guidelines for Caring Practices Discover that they want you to let others know Discover that they want you to let others know Promote adult choices Promote adult choices Learn about past & hopes Learn about past & hopes Be aware of invasive elements of care Be aware of invasive elements of care What supports client’s self-worth What supports client’s self-worth What is you way of understanding a problem? What is you way of understanding a problem?

Conclusion Ethics of everyday living Ethics of everyday living What bring flourishing in decline? What bring flourishing in decline? Attention to particulars Attention to particulars