Beyond Vanilla: Part II

1. Martha Holstein, Ph.D. 2013 Cuyahoga County Conference on Aging October 18, 2013 Beyond Vanilla: Part II

2. Some Reminders • Ethical dilemmas involve a conflict in values—a situation where more than one way of acting can be ethically justified. • To decide which values you will support, it is important to go though a process of moral reasoning: • Ends-based thinking (outcomes; harms/benefits—all stakeholders count) • Rule or principle-based thinking (universal or dominant [prima facie] duties) • Feminist/narrative thinking (sustaining relationships, contextual, particularistic—this family in this situation- that will achieve the best results all things considered) • Need to determine what recommendation will you make and why (key point—need to have good reasons for the decision to be made).

3. A Brief Follow-Up: Ageism • As noted in my talk, I am concerned that current strategies for dealing with ageism will further denigrate being old. • I repeat the this idea from AsvishaiMargalit (1996) “society’s problem is not how to eliminate humiliation by eliminating poverty (read old age and its markers), but how to remove the humiliation from poverty (from aging bodies). Can you think of ways that we as a society can be more tolerant and accepting of the changes that happen to us as we age? • How can we resist ageism?

4. Long-Term Care Cases and Discussion

5. Case # 1: I’m Going Home! • Drew Atkins had been hospitalized for a week following an MI and a stoke. He suffers from mild cognitive impairment. His wife, Sandra, has been taking care of him for the past 2 years. She suffers from CHF and arthritis and admits to being totally exhausted. Drew’s week in the hospital gave her the most extended relief that she has had for 2 years. The Atkins’ children live in other states. They do what they can to help like sending money when they can so that their mother can get some respite. They resent their father since he was very authoritarian as they were growing up and gave them very little attention. The Atkins family • Drew insists that not only will he will go home but that he will not permit anyone else to care for him but Sandra. • What now?

6. Considering the Atkins Case • Is this a right-right situation? • If so, what important values are in contention? • How might different kinds of moral reasoning help you decide between or among these values?

7. Case # 2” Home? Safe or Sorry? • Drucilla Barnes needs a lot of care. She is a double-amputee (uncontrolled diabetes), suffers from congestive heart failure, and mild dementia. So far she seems quite able to manage her own medications as long as they are properly set out near her wheel chair. She is receiving the maximum amount of care that the waiver program can provide. Someone comes in each day to help her bathe and dress and to prepare her meals and straighten up. Mrs. Barnes is a wonderful client, always grateful for the help and appreciative of the visits.

8. Home? Safe or Sorry? [2] • But Mandy Simons, the home care aide, is convinced that she cannot give Mrs. Barnes all the help that she needs. • Sometimes she arrives in the morning to find Mrs. Barnes lying in her own urine. Other times she finds that the front door is unlocked. Mrs. Barnes explains that she likes to have her neighbors drop by and she simply can’t get to the door fast enough to let them in. Her house is also quite cluttered. Mandy can’t help but worry about Mrs. Barnes, who is one of her favorite clients. She speaks to the case manager because she doesn’t think that Drucilla can remain at home any longer. • Now what?

9. Considering the case of Mrs. Barnes • Are the choices that the care manager faces a right-right situation, that is, more than one way of acting can be defended? • What are the important values/issues that are at stake? Consider both traditional and alternative ways of thinking. Consider the meanings of safety. • What additional facts would you like to have? • How do different kinds of moral reasoning help you to consider this situation? • What would you do and why?

10. Exercise # 1: Caregiving and LTC • At each table, discuss and address the following questions: • What are three primary problems, as you see them, in the way LTC is now provided in this country? (You should feel free to agree or disagree with some of the issues I raised) • What recommendations would you make to address these problems? • What are the barriers to realizing these recommendations? • How might they be overcome? • Report back

11. End of Life Care Issues, Cases and Discussion

12. End of Life Care: Basic Facts • More people die in the hospital than at home despite their expressed wishes. • Many people die in pain • Very few have had conversations or signed directives about the care they want at they move from life to death • Even with directions, families have a hard time deciding what to do • Hospice and palliative care underused

13. Limits of Today’s Possibilities • Advance directives have not worked as intended • Assumptions that support them contestable • Ethical foundation individualistic • Realities of the situation: value uncertainty, time, fear, circumstances unanticipated • Hospice and palliative care underused • The “culture of medicine”* shapes how we die? • More general cultural attitudes limit conversations *that which shapes relationships, reimbursements, possibilities, attitudes toward treatment including normalization of interventions, communication approaches

14. What Can Be Done? • Re-think advance directives • From contract to covenant • Goals rather than treatments • Re-imagine meaning of autonomy at the end of life • What matters? • Consider the culture of medicine and the broader culture and the representative attitudes toward death—what can be done? • “mass customization” (Lynn) • Replace “war” metaphors • Improve communication • Other?

15. Case: Please Let Me Die • Joanne Taylor is 82 years old. She looks back on her life with pleasure—her family, her profession, her community all have had great meaning for her. • But now she is dying—metastatic breast cancer has invaded her bones and her liver and now her brain. She lives at home but is in great pain. She will die soon no matter what medicine offers to her.

16. Please Let Me Die [2] • She gathers her family around her. With considerable effort because of the morphine she tells them her wishes—that she wants help in dying. The worst suffering is not physical; it is burdening her family and losing herself. She wants to go peacefully while she still recognizes her family and see herself as herself. (Imagine what else she might be thinking). She asks for their help. • Now put yourself in the place of her family members –What are they thinking? What if they don’t agree? What might they be worrying about? (For sake of discussion, lets set aside the legal issues and focus only on the moral). • Discuss

17. Case: Can’t You Get it Together? • Bonnie Cohen had been a case manager for the past 12 years and had met all kinds of families. But the Stangl family took the cake. Their father, Henry Stangl, had suffered for many years with a variety of illnesses but wasn’t one to complain. Now 92, he had dementia, cancer that he had for the past several years but had recently turned more aggressive. He was very sweet and welcomed the home care aide that Bonnie had arranged for. But now some important treatment choices had to be made including hospitalization if he should develop pneumonia or other problems requiring more aggressive treatment than he could get at home.

18. Can’t You Get it Together? [2] • Bonnie notified the family, with whom she had only had phone conversations. The three sons arrived one day and the one daughter the next. There was no power of attorney or living will. Bonnie convened a family meeting and tried to get them to focus on the likely situations that their father might fall prey to. Immediately they started to disagree—“do everything,” “do nothing and let him die peacefully,” “do nothing extraordinary.” Bonnie could get no agreement on anything and she knew that decisions would soon have to be made. They would not agree on who would be the decisionmaker.

19. Exercise # 2: Improving End of Life Care • Given the problems that have been identified, develop recommendations that re aimed at addressing these and any other problems that you identify. • Report back

20. Organizational Ethics: In Brief • Some issues need to be decided on an organizational level. • Key areas: • Conflicts of interest • Transparency • Finances • Staff issues

21. Organizational Ethics Brief Discussion and Case

22. Case: Honoraria • Paulette Fry is the CEO of the Mercy Community Health Center. Funded by public and private funds, it serves a low income community in a major city. Paulette has become well know in the community for the clinic’s excellent service and for her compassionate concern for all who come through its doors. Lately, Paulette has been receiving more and more invitations to speak at community events and in the past year she has also been invited to give the keynote talk at a national meeting. She does all this gladly. She has received modest honoraria for all her talks and a more substantial one from the national organization. So far, she has kept the honoraria since she has prepared her talks outside of working hours although she has attended the events during working hours. In her mind, her salary is modest compared to that earned by other administrators in health clinics. She is committed to the organization and wants to stay even though she has had offers from larger centers at substantially more pay. These honoraria make a difference in her ability to make it on the salary she earns. After all, she thinks, just because I work for a non-profit doesn’t mean I have to skimp on everything. • Should there be an organizational policy? If so, what do you recommend and why?