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

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

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

2 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 with new eyes acute care See with new eyes acute care Suggest what principles and guidepost should caregiver appeal. Suggest what principles and guidepost should caregiver appeal. Identify best practices that address these issues Identify best practices that address these issues

3 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 New mechanisms to address New mechanisms to address

4 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

5 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 personal exercise of autonomy Problems for the personal 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 yr 1; 20-40% yr 2 1 in 3 die yr 1; 20-40% yr 2

6 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

7 The Moral Ecology The staff—different professional training. Often not as skilled as acute care with the bulk of care being supplied by nursing aids—who comprise in some instances up to 70% of the staffs. Often not as skilled as acute care with the bulk of care being supplied by nursing aids—who comprise in some instances up to 70% of the staffs. Professional boundaries are unclear. Professional boundaries are unclear. Boundaries crossing include becoming intimate with the resident, either though self disclosure or prying into a residents life, identifying with the resident, accepting or giving gifts Boundaries crossing include becoming intimate with the resident, either though self disclosure or prying into a residents life, identifying with the resident, accepting or giving gifts Coercion—and formal and informal behavioral limits Coercion—and formal and informal behavioral limits Cultural/ethics difference with resident Cultural/ethics difference with resident

8 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

9 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.

10 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

11 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

12 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.

13 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

14 Focus of concern Caring Caring Dignity Dignity Flourishing Flourishing

15 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

16 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.

17 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?

18 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?

19 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?

20 Sexual Intimacy Mr. Pfister, a widower / several strokes / moves with difficulty At Homewood Manor for almost 9 years. Chose nursing home so not to be a burden to his children. He has always had a good relationship with them and would like to keep it that way. Suffering from the beginnings of dementia although he still can make his wishes known. Mrs. Langer, a widow/ a diagnosis of Alzheimer’s disease, but she can still recognize her children. She has the brightest, most cheerful smile and has preserved many of the social graces that her family remembers her for so fondly. Pfister & Langer meet as soon as they moved in They have grown quite attached to one another. Both are in their late 80s and seem to be in good health outside the conditions that brought them to the nursing home.

21 Mrs. Langer’s children live nearby and so visit often; they seem quite attached to their mother but they have expressed some concern about this particular friendship between their mother and Mr. Pfister. Mrs. Langer’s children live nearby and so visit often; they seem quite attached to their mother but they have expressed some concern about this particular friendship between their mother and Mr. Pfister. One day, a nurse knocks on Mr. Pfister’s door and, when she receives no answer, she walks in. She finds them in bed together, virtually naked and clearly enjoying a warmly sexual encounter. She closes the door but doesn’t know if she has done the right thing. One day, a nurse knocks on Mr. Pfister’s door and, when she receives no answer, she walks in. She finds them in bed together, virtually naked and clearly enjoying a warmly sexual encounter. She closes the door but doesn’t know if she has done the right thing.

22 The problem and how to analyze A pervasive belief in society that “sex is for the physically and cognitively intact” A pervasive belief in society that “sex is for the physically and cognitively intact” 1. Preparation 1. Preparation How big a problem?How big a problem? Whose interests are affected?Whose interests are affected? 2. Decision making 2. Decision making Identify the moral concernIdentify the moral concern Fact gatheringFact gathering Identify and clarify the key moral conceptsIdentify and clarify the key moral concepts Identify alternatives—pros and consIdentify alternatives—pros and cons Integrity preserving compromisesIntegrity preserving compromises 3. Follow through 3. Follow through Set accountabilities and expectationsSet accountabilities and expectations Build a communication planBuild a communication plan

23 Complexity of potential questions Relationships: Relationships: SpousesSpouses Spouse with one who has dementiaSpouse with one who has dementia Non-spousesNon-spouses Non-spouses, one of whom has dementiaNon-spouses, one of whom has dementia Same-sex relationshipsSame-sex relationships Range of activities that may need to be addressed: Range of activities that may need to be addressed: Hugging, kissing, hand-holding, intimacyHugging, kissing, hand-holding, intimacy Use of pornographic materialUse of pornographic material VoyeurismVoyeurism Sexually explicit gestures or languageSexually explicit gestures or language Genital activity, masturbation, sexual intercourseGenital activity, masturbation, sexual intercourse

24 Fact gathering: learn about the issues federal OBRA regulations that require privacy for resident in long-term care; federal OBRA regulations that require privacy for resident in long-term care; federal HIPPA laws that govern confidentiality of health care information; federal HIPPA laws that govern confidentiality of health care information; federal housing regulations that require non-discrimination; federal housing regulations that require non-discrimination; the religious tradition teaching on institutional cooperation and scandal the religious tradition teaching on institutional cooperation and scandal some residents are vulnerable because of some physical or mental disability; some residents are vulnerable because of some physical or mental disability;

25 Define key moral concepts: Sexual behavior Sexual behavior List sexual behaviors that are clearly acceptable or unacceptable (e.g., that cause concern/risk), and identify those where disagreement remains List sexual behaviors that are clearly acceptable or unacceptable (e.g., that cause concern/risk), and identify those where disagreement remains Material cooperation e.g., what institutions can permit or tolerate Material cooperation e.g., what institutions can permit or tolerate Scandal e.g., how the practices might break the faith of residents, staff or local community Scandal e.g., how the practices might break the faith of residents, staff or local community

26 Identify key moral questions: Since HIPPA laws set guides for what information can or cannot be disclosed, are there any conditions under which a facility can disclose to a resident’s family members information about a resident’s sexual activity? Since HIPPA laws set guides for what information can or cannot be disclosed, are there any conditions under which a facility can disclose to a resident’s family members information about a resident’s sexual activity? What are the differences between controlling intimacy and sexual behavior conducted in private, and that conducted in a public forum within the institution? What are the differences between controlling intimacy and sexual behavior conducted in private, and that conducted in a public forum within the institution? In public displays of intimacy or sexual behavior are there any differences between spouses and non- spouses? In public displays of intimacy or sexual behavior are there any differences between spouses and non- spouses? Should the institution respond with different practices for residents with limited or greater mental impairment? Should the institution respond with different practices for residents with limited or greater mental impairment?

27 Can the institution control the behavior of an adult whose ability to consent is impaired? Can the institution control the behavior of an adult whose ability to consent is impaired? In cases of mental impairment, is there a moral difference in sexual activity between spouses and non-spouses? In cases of mental impairment, is there a moral difference in sexual activity between spouses and non-spouses? Since OBRA regulations require that long- term care facilities provide space for privacy, can the institution control the intimacy and sexual behavior of consenting adults conducted in private? Since OBRA regulations require that long- term care facilities provide space for privacy, can the institution control the intimacy and sexual behavior of consenting adults conducted in private?

28 Identify alternatives—pros/ cons A rationale: why are some kinds of sexual behavior are clearly acceptable or not?. A rationale: why are some kinds of sexual behavior are clearly acceptable or not?. Ensuring that the practices defines consent and risk. Ensuring that the practices defines consent and risk. Positive statements of the nature of sexual behavior and forms of physical intimacy that will generally be promoted e.g., such as hugging, holding hands and dancing. Positive statements of the nature of sexual behavior and forms of physical intimacy that will generally be promoted e.g., such as hugging, holding hands and dancing. Documentation procedures, appropriate terminology to be used, recording objective observations, not personal values statements. The documentation system notes the frequency, intensity, duration and level of risk associated with observed sexual behaviors. Documentation procedures, appropriate terminology to be used, recording objective observations, not personal values statements. The documentation system notes the frequency, intensity, duration and level of risk associated with observed sexual behaviors. Assessment procedure to be followed to determine the level of risk associated with any sexual behavior Assessment procedure to be followed to determine the level of risk associated with any sexual behavior

29 Procedure for reporting observed sexual behaviors. Procedure for reporting observed sexual behaviors. Team discussion/meeting expectations to review the parameters of sexual behaviors in each clinical case, and to identify, implement and evaluate interventions. In cases where the resident is incapable of making decisions, consideration should be given to the involvement of the appropriate decision maker, such as health care proxy/agent. Team discussion/meeting expectations to review the parameters of sexual behaviors in each clinical case, and to identify, implement and evaluate interventions. In cases where the resident is incapable of making decisions, consideration should be given to the involvement of the appropriate decision maker, such as health care proxy/agent. How to address persistent hyper-sexuality that presents high risk of physical injury to others. How to address persistent hyper-sexuality that presents high risk of physical injury to others. Reference to when external reporting is necessary, for example, when behavior would fall under elder abuse regulations and long- term care reporting requirements for unusual occurrence incidents. Reference to when external reporting is necessary, for example, when behavior would fall under elder abuse regulations and long- term care reporting requirements for unusual occurrence incidents.

30 Consider having a decision-tree that helps staff identify management responses to sexual behaviors. Consider having a decision-tree that helps staff identify management responses to sexual behaviors. Educational training for staff (expectations of participation). Educational training for staff (expectations of participation). Outline the organization’s commitment and intent for ongoing staff training and orientation, and for orientation of new families to the facility’s policy. Outline the organization’s commitment and intent for ongoing staff training and orientation, and for orientation of new families to the facility’s policy. Include case studies as an addendum to the policy that can be used for orientation of new staff. Include case studies as an addendum to the policy that can be used for orientation of new staff.

31 Sexual Behavior Worksheet 1. Description of the observed behaviors from team (including family): 2. Assessment of competency (For example, see Appendix A) 3. Beliefs and values: resident: resident: family: family: staff (personal and professional): staff (personal and professional): 4. Any differences within team regarding beliefs and values? Are they resolvable? Can the team come to a compromise? If the resident cannot participate in decision-making about the relationship, then what does the family say about it continuing? 5. Given the differences and/or compromises made, what are the circumstances and conditions (parameters) under which the relationship or behavior will continue? 6. List specific interventions identified for the situation:

32 Mental status exams for sexual behavior when there is doubt about the client’s capacity to consent 1. Client’s/resident’s awareness of the relationship Is the client/ resident aware of who is initiating sexual contact? Is the client/ resident aware of who is initiating sexual contact? Does the client/resident believe that the other person is a spouse and thus acquiesce out of a delusional belief, or are they cognizant of the other’s identity and intent? Does the client/resident believe that the other person is a spouse and thus acquiesce out of a delusional belief, or are they cognizant of the other’s identity and intent? Can the client/resident state what level of sexual intimacy they would be comfortable with? Can the client/resident state what level of sexual intimacy they would be comfortable with? 2. Client’s/resident’s ability to avoid exploitation Is the behavior consistent with formerly held beliefs/values? Is the behavior consistent with formerly held beliefs/values? Does the client/resident have the capacity to say no to any uninvited sexual contact? Does the client/resident have the capacity to say no to any uninvited sexual contact? 3. Client’s/resident’s awareness of potential risks Does the client/resident realize that this relationship may be time limited (placement on unit is temporary)? Does the client/resident realize that this relationship may be time limited (placement on unit is temporary)? Can the client/resident describe how they will react when the relationship ends? Can the client/resident describe how they will react when the relationship ends?

33 Decision Tree for Assessing Competency to Participate in a Sexual Relationship Mini-Mental State score greater than 14 Yes No Perform assessment InterviewClient unable to consent Client’s ability to avoid exploitation Yes No Continue EvaluationClient unable to consent Client’s awareness of the relationship Yes No Continue EvaluationClient unable to consent Client’s awareness of risk Yes No Consider client riskProvide frequent reminders of competent to participate in abut permit relationship intimate relationship

34 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


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