Meaning-Making in the Work of Patient Advocates

1. Meaning-Making in the Work of Patient Advocates Emily Heaphy May Meaning Meeting March 31, 2007

2. Overview • Patient Advocates: Who & Why • Research Question • Research Design and Analysis • Meaning-Making Themes • Theoretical Import • Help from you!

3. Who are Patient Advocates? • Employed by the hospital • Job Title • Ombuds, patient advocate, patient representative, guest relations, patient relations • Typical Complaints • Rude staff, coordination, pain medication • Education • High school to masters

4. Characteristics of the Work • Negotiation • Mediation • Communication • Customer Service • SHCA Professional Association • Relational • Emotional • Ambiguous • Angry family members • Sad patients • Defensive hospital staff • Careseekers’ needs • Profession • Loyalties

5. Why patient advocates? • Insights into studying agency in organizations • Social Skill (Fligstein, 1997) • Basis of social skill is ability to relate to the situation of the other • Versus self-interested actors • Definition: Motivate cooperation in others by finding common meanings and identities • E.g., framing, agenda setting • Theoretical context: New institutional theory

6. Research Questions • How do patient advocates’ make meaning for self and others? • Data • What do these meaning-making themes reveal about accomplishing work? • Theoretical play-time

7. Questions for you • Do categories of meaning-making make sense to you? • What do these categories unlock in terms of agency and accomplishing work? • What additional theories make sense to understand this data?

8. Cultural/Professional/Institutional Context Conference Participant-Observation Background Interviews Documents Veterans Health Administration Teaching Hospitals PA PA Individual Interviews Individual Interviews Shadowing Shadowing Work Practice Work Practice Methods

9. Cultural/Professional/Institutional Context Veterans Health Administration Teaching Hospitals PA PA Individual Interviews Individual Interviews Work Practice Work Practice Methods

10. Interviews Goal: Understand patient advocates’ work practice, including the body Interview Description Sample 24 women 7 men • Setting: • 1-on-1 interviews in offices (4 via phone) Individual Interviews 31 interviews 24 White 7 African-American 19 tertiary hospitals • Length: • 45 min. - 3 hours • Additional informal conversation, meals, facility tours 7 VA 12 Teaching

11. Interview content Background: Career path, typical day Stories about handling cases Effective, challenged, ambiguous Examples of role responsibilities Taped and transcribed Wrote field notes after interview & visit Interviews

12. Current Analysis • Data management • Unit of analysis: • Stories about handling cases • Reducing stories to 1-page format • Analytic questions • How do patient advocates make meaning for self and others? • Moving towards theory development via coding, memoing, discussions

13. Meaning-Making Themes • Discernment • Perspective-taking • Co-constructing survivors’ grief narratives

14. Meaning-making themes Discernment Perspective-taking Co-constructing grief narratives

15. Theme 1: Discernment • Defined: • Finding core meaning(s) in others’ stories • Often muddled and contradictory • A process of meaning-making over time • Co-constructing meaning

16. Discernment • Sorting emotional cues • Creating relational moment for re-narration • Channeling information for appropriate meaning-making

17. Sorting emotional cues Excerpt of Story #52 Yesterday, at 10 after 4, I had a patient that both [my coworker] and I know call, leave me a message, an angry message. I tried to call him back, he...the line was busy…I called him right up until 4:30, and I couldn’t get through. And then, I’m looking up...because..he was ranting on the phone, so you’re trying to figure out, “Okay, what did he say?” Because you can’t understand him? Well, I could understand him physically, but it wasn’t making sense. He was so angry….

18. Creating relational momentfor re-narration Excerpt of Story #28 I’ll have a veteran come in sometimes. It’s amazing…and they might be out of the service 50 years, married 50 years, and they have some emotional issues that are coming out, and all of a sudden, I’ll ask the right question, and they’ll just burst into tears. And the wife will be sitting there, and they’ve never shared whatever it is. The wife had no clue...because they did not share that information with their families. And I hear this a lot...they have post traumatic stress disorder, or they have some kind of an issue that is eating at them, and they’ve never shared it. Time after time, patient’s wives will come in and, “I never knew that.” You know, you’ve been married to someone 50 years…

19. Channeling information for appropriate meaning-making Excerpt of Story #41 I got a letter from a mother, out West, that has a son here that’s under the guardianship of a father, and she was concerned the father wasn’t doing a very good job, and the other side of the story is, the mother hasn’t seen her son in years, and only talks to him once a month. And she’s getting the side of the son who’s not really capable of giving her full information. But I made sure that letter went to both the psychiatrist and their doctor.So I mean, whether it’s factual or not, it’s up to the doctor to decide. Appropriate mean-makers

20. Meaning-making themes Discernment Creating relational moment for re-narration Channeling information for approp. M-M Sorting emotional cues

21. Theme 2: Perspective-taking • Empathy • Holding multiple perspectives on a case • Creating perspective-taking in others • “Imaginative” perspective-taking

22. Empathy Excerpt of Story #14 A social worker and I worked on a murder-torture sort of case. We worked with the surviving patient who was a young teenager… And I just had a lot of others in the ICU…particularly where we’ve had a family member come in with a gunshot wound or been beaten by a bat. And of course you can imagine yourself, if you had a family member who these things [happened to] are just your worst nightmare ever.

23. Holding multiple perspectives Excerpt of Story #17 A patient had some money and jewelry in a safe, and the patient wanted his girlfriend to pick it up. So she went to Security and they wouldn’t release it because the form hadn’t been filled out properly, and she was really upset, understandably, and Security was upset because she was making such a ruckus. It’s a big hospital - I would be ticked off too.So I ended up giving her a gift card for her inconvenience - lots of gift cards today.

24. Creating perspective-taking in Patients Excerpt from Story #20 A man was upset about a nurse, and I can explain that if you were feeling chest pains, would you want the nurse to stop and get you water? And then, he’ll say no, I guess I would want her to help me with my chest pains.

25. Creating perspective-taking in Staff Excerpt from Story #27 An example…is a patient of a mother of disabled child who has difficulty arriving for appointments on time. The physician’s office is very angry, very upset. The staff person I spoke to was very unforgiving. I said, have you ever tried to dress a child in the morning let alone a disabled child and be dependent on public transportation to arrive someplace on time? Well no I haven’t.Well until you do, perhaps the best thing to do is to schedule this non- (inaudible) for an end of the day when if there is a delay she hasn’t backed up the whole schedule for the whole office.Secondly if she doesn’t show that time can be used as administrative time for the doctor. Perspective of: Patient Physician’s office Physician

26. “Imaginative” perspective-taking Excerpt of Story #42 We get reports from people sometimes that say, “I know so and so is selling their drugs on the street.” I pass that information onto the doctor, but it has to be up to the doctor to decide, because it’s not my choice of whether he’s going to cut that patient off from his narcotics just because somebody said he’s selling them. It could be an ex-wife who’s very angry for all I know.But the idea is just to get it in the right direction and let the person...those people need to handle it.

27. Meaning-making themes Discernment Creating relational moment for re-narration Channeling information for approp. M-M Sorting emotional cues Perspective-taking Creating perspective-taking in others Empathy Holding multiple perspectives “Imaginative” perspective-taking

28. Theme 3: Co-constructing survivor’s grief narratives • Re-presenting artifacts • Creating limits

29. Re-presenting artifacts Excerpt of Story #60 Have you see a death certificate? Neither have I. I’m interested to see what it looks like but [a deceased patient’s daughter] said that there is a portion that gives you the option of cause of death and that under smoking there are 4 options. The doctor checked “probably” on it [for her father]. She was upset because she said “My father was an extreme advocate against smoking so this is not good representation.”

30. Creating limits Excerpt of Story #37 This [mother of a cancer patient] was using me as her therapist…People call and expect more of me than I can give them. There comes a time when it needs to end…She’s really looking . . .for answers and sometimes answers that we can’t give. Sometimes the answers doctors can’t give. They want you to say what really happened and to be honest, we’re all human, and sometimes I think doctors should just say I don’t know what happened. I think they don’t feel comfortable in saying that but we need to say that to people. There are things beyond our control and I did the best I could do with the knowledge that I have and let it go.

31. Question 1: How do patient advocates make meaning for self and others? Discernment Creating relational moment for re-narration Channeling information for approp. M-M Sorting emotional cues Perspective-taking Creating perspective-taking in others Empathy Holding multiple perspectives “Imaginative” perspective-taking Co-constructing grief narratives Re-presenting artifacts Creating limits

32. Question 2 • What do these forms of meaning-making reveal about accomplishing work? • 3 answers

33. 1. Meaning-makingOrganizes action in self and others Discernment Creating relational moment for re-narration Channeling information for approp. M-M Sorting emotional cues Perspective-taking Creating perspective-taking in others Empathy Holding multiple perspectives “Imaginative” perspective-taking Co-constructing grief narratives Re-presenting artifacts Creating limits

34. 2. Withholdingfrom meaning-making is a form of work Discernment Creating relational moment for re-narration Channeling information for approp. M-M Sorting emotional cues Perspective-taking Creating perspective-taking in others Empathy Holding multiple perspectives “Imaginative” perspective-taking Co-constructing grief narratives Re-presenting artifacts Creating limits

35. 3. The work of re-narrating “biographies” in bureaucracies (Heimer, 1995) Discernment Creating relational moment for re-narration Channeling information for approp. M-M Sorting emotional cues Perspective-taking Creating perspective-taking in others Empathy Holding multiple perspectives “Imaginative” perspective-taking Co-constructing grief narratives Re-presenting artifacts Creating limits

36. Potential Theoretical Import • Elaborates theory of social skill by • Describing how meaning-making occurs • Links individual actions with making (small) organizational alterations • Example of meaning construction – and co-construction – as a core task of work • Other ideas?

37. Questions for you • Do categories of meaning-making make sense to you? • What do these categories unlock in terms of accomplishing work? • What additional theories make sense to understand this data?

38. EXTRAS

39. Meaning-making themes Discernment Creating relational moment for re-narration Channeling information for approp. M-M Sorting emotional cues Perspective-taking Creating perspective-taking in others Empathy Holding multiple perspectives “Imaginative” perspective-taking Co-constructing grief narratives Re-presenting artifacts Creating limits

40. How does meaning-making help accomplish work? • Discernment helps organizes action • Perspective-taking gives them cognitive flexibility • Helps enlist others in concerns/issues • Constructively (towards problem resolution) channel emotions in organizations

41. Theoretical import? • Co-construction of meaning to agency • Patient advocates’ meaning–making as translating between cases and biographies (Heimer) • Making bureacracies navigable

42. How does meaning-making help accomplish work? • Organizes action • Cognitive flexibility • Helps enlist others in concerns/issues • Constructively (towards problem resolution) channel emotions in organizations

43. Why is discernment important?Organizes their action Excerpt of Story #2 This case is kind of odd to deal with because the wife just called about a month agoand the complaint is from 2004 when her husband passed away….I don’t think she feels that anything went wrong and nothing did but the family, especially the wife…hasn’t really gotten through the grief process.A lot of times that’s what we also find especially with patients who have something like cancer or something. You would think they would be prepared but they’re just never prepared …. I’m going to make sure someone from Spiritual Care is actually [at the family meeting]…it just sounds to me that’s just where this family is…. The hospital staff has done everything they can to care for this person yet the family really ends up feeling dissatisfied because of that one piece. Here we are 2 years later trying to bring closure to that and justifiably the staff thinking they had closed that….Just because we do those things doesn’t mean someone is ready to go through the process. It can be emotionally draining to do this job.

44. Research Design:Patient Advocates are like…. Managers • Disturbance handling (Mintzberg, 1973) • Toxin handlers (Frost, 2003) Caregiving roles • Social workers (Kahn, 1993; Meyerson, 1994) • Nurses (Benner, 1984; Jacques, 1992) Service work • Customer Service (e.g., Grandey, Fisk, Steiner, 2005; Rafaeli, 1989 ) • Salespeople (e.g., Ramsey & Sohi, 1997) • Neutral parties to conflict • Mediators (e.g., Poitras, 2005) • Ombuds (Silver, 1967; Gadlin, 2000) • Peacekeepers (Off, 2000) Representatives in a conflict • Lawyers (e.g., Eylon, Giacalone, Pollard, 2000) • Negotiators (e.g., Fisher, Ury, & Patton, 1991) Investigators • Detectives • Inspectors “Dealing with involuntary situations and change that is partially beyond the managers’ control” (p. 82)

45. Why is discernment important?“Truth” not the goal Excerpt of Story #19 A girl came in to me today and told me she thought a nurse was high. I think it would be good to know the truth in that situation, but it doesn’t mean you will.

46. Putting themselves in others’ shoes Excerpt of Story #59 For the phone call that I just got off, the patient was discharged from the hospital and he was a diabetic. The…wife of the patient…had some concerns about his treatment while he was here…One of them was that he hadn’t had his insulin and she inquired about it to the nurse and the nurse looked through his charts and said, “Oh, he is a diabetic.” …She should not have had to inquire about what types of medications or what type of shots he has or has not gotten.This is all things that we should be concerned about on a regular basis. He’s in our care so if God forbid he didn’t have a family member to come and visit, how would we have ever known this? There are some things that we need to do to improve as an institution and that for an example is something where I think to myself if this were my father who was in the hospital, number one, family has a very different way of responding to things especially when you have a loved one that’s in the hospital. She addressed me in a very respectful fashion so I want to be on top of things for this . . .I don’t ever want for someone like that to have to call me and say, “Have you done anything about it?” I want to be able to call her and say that this is what’s taken place right now or this is who you can expect a phone call from.

47. Research Design:Organizational Variation

48. Treating all concerns as valid Excerpt of Story #9 Sometimes we’re completely at fault. Sometimes the patient is way off base but you still have to respond in a manner that their concerns are . . . All concerns are valid and need to be treated as valid.

49. Treating all concerns as valid Excerpt of Story #63 Do you have a sense like what you did that made her feel heard? Most of the time when…I get that response is that they tell me that I listen and that I don’t say “Oh, that never happened.” I cannot say that.I can never say what has happened or can happen or didn’t happen if I wasn’t there.If a person is giving an impression because you are automatically defending your staff person or whomever, oh they would never do that, which I’ve heard myself, oh nobody on my staff would ever do that, and then you find out later that somebody on your staff did do that. When I’m talking to them or listening to them and I immediately don’t discount what they say or respond in a manner which makes them think I don’t believe them, it validates their position.

50. Themes: Perspective-taking • Forms of perspective-taking • Empathy • Holding multiple perspectives on a case • Part of comfort with ambiguity • Creating perspective-taking in others • a form of action • “Imaginative” perspective-taking • Part of comfort with ambiguity