Telehospice : Promising Outcomes and Lessons Learned from Intervention Studies

1. <?xml version="1.0"?><AllQuestions /> <?xml version="1.0"?><Settings><answerBulletFormat>Numeric</answerBulletFormat><answerNowAutoInsert>No</answerNowAutoInsert><answerNowStyle>Explosion</answerNowStyle><answerNowText>Answer Now</answerNowText><chartColors>Use PowerPoint Color Scheme</chartColors><chartType>Horizontal</chartType><correctAnswerIndicator>Checkmark</correctAnswerIndicator><countdownAutoInsert>No</countdownAutoInsert><countdownSeconds>10</countdownSeconds><countdownSound>TicToc.wav</countdownSound><countdownStyle>Box</countdownStyle><gridAutoInsert>No</gridAutoInsert><gridFillStyle>Answered</gridFillStyle><gridFillColor>0,0,0</gridFillColor><gridOpacity>100%</gridOpacity><gridTextStyle>Keypad #</gridTextStyle><inputSource>Response Devices</inputSource><multipleResponseDivisor># of Responses</multipleResponseDivisor><participantsLeaderBoard>5</participantsLeaderBoard><percentageDecimalPlaces>0</percentageDecimalPlaces><responseCounterAutoInsert>No</responseCounterAutoInsert><responseCounterStyle>Oval</responseCounterStyle><responseCounterDisplayValue># of Votes Received</responseCounterDisplayValue><insertObjectUsingColor>Blue</insertObjectUsingColor><showResults>Yes</showResults><teamColors>User Defined</teamColors><teamIdentificationType>None</teamIdentificationType><teamScoringType>Voting pads only</teamScoringType><teamScoringDecimalPlaces>1</teamScoringDecimalPlaces><teamIdentificationItem></teamIdentificationItem><teamsLeaderBoard>5</teamsLeaderBoard><teamName1></teamName1><teamName2></teamName2><teamName3></teamName3><teamName4></teamName4><teamName5></teamName5><teamName6></teamName6><teamName7></teamName7><teamName8></teamName8><teamName9></teamName9><teamName10></teamName10><showControlBar>Slides with Get Feedback Objects</showControlBar><defaultCorrectPointValue>100</defaultCorrectPointValue><defaultIncorrectPointValue>0</defaultIncorrectPointValue><chartColor1>187,224,227</chartColor1><chartColor2>51,51,153</chartColor2><chartColor3>0,153,153</chartColor3><chartColor4>153,204,0</chartColor4><chartColor5>128,128,128</chartColor5><chartColor6>0,0,0</chartColor6><chartColor7>0,102,204</chartColor7><chartColor8>204,204,255</chartColor8><chartColor9>255,0,0</chartColor9><chartColor10>255,255,0</chartColor10><teamColor1>187,224,227</teamColor1><teamColor2>51,51,153</teamColor2><teamColor3>0,153,153</teamColor3><teamColor4>153,204,0</teamColor4><teamColor5>128,128,128</teamColor5><teamColor6>0,0,0</teamColor6><teamColor7>0,102,204</teamColor7><teamColor8>204,204,255</teamColor8><teamColor9>255,0,0</teamColor9><teamColor10>255,255,0</teamColor10><displayAnswerImagesDuringVote>Yes</displayAnswerImagesDuringVote><displayAnswerImagesWithResponses>Yes</displayAnswerImagesWithResponses><displayAnswerTextDuringVote>Yes</displayAnswerTextDuringVote><displayAnswerTextWithResponses>Yes</displayAnswerTextWithResponses><questionSlideID></questionSlideID><controlBarState>Expanded</controlBarState><isGridColorKnownColor>True</isGridColorKnownColor><gridColorName>Yellow</gridColorName><AutoRec></AutoRec><AutoRecTimeIntrvl></AutoRecTimeIntrvl><chartVotesView>Percentage</chartVotesView><chartLabelsColor>0,0,0</chartLabelsColor><isChartLabelColorKnownColor>True</isChartLabelColorKnownColor><chartLabelColorName>Black</chartLabelColorName><chartXAxisLabelType>Full Text</chartXAxisLabelType></Settings> <?xml version="1.0"?><AllAnswers /> Telehospice:Promising Outcomes and Lessons Learned from Intervention Studies Elaine Wittenberg-Lyles, PhD Associate Professor Markey Cancer Center/ Department of Communication University of Kentucky

2. Telehospice Project Team Karla Washington, MSW, PhD Social Work University of Louisville George Demiris, PhD Bio informatics University of Washington Elaine Wittenberg-Lyles, PhD Communication Studies University of Kentucky Debra Parker Oliver, MSW, PhD Social Work University of Missouri Funding by National Cancer Institute, National Institute of Nursing Research, John A. Hartford Foundation

3. Background • 1.56 million patients who received hospice care last year in the United States, 83% were age 65 or greater (National Hospice and Palliative Care Organization, 2010) • Caregivers perform nursing tasks and deal with emotional problems while also witnessing their loved one’s dying process (Pinquart & Sorensen, 2003)

4. BackgroundFamily Caregivers Higher risk for deteriorating physical health, depression, financial challenges and premature death (Dean, 1995; Sherwood, Given, Given & von Eye, 2005) Although pain control continues to be among one of the highest priorities for patients and caregivers during end-of-life care (Downey, Engelberg, Curtis, Lafferty, & Patrick, 2009), medication and pain management are among the top unmet needs of hospice caregivers (Bee, Barnes, & Luker, 2009)

6. Background Family have identified problems in pain and symptom management and emotional support from staff (Hermann & Looney, 2001; Kutner, Kassner, & Nowels, 2001; Teno et al., 2004) Very few, if any, evidence-based caregiver interventions have been translated to or implemented in practice settings (Northouseet al, 2010)

7. Telehospice the use of advanced communication technologies to improve the quality of hospice services delivered to patients and their families

8. Telehospice Interventions Minimize suffering and improve patients’ /caregivers quality of life at the end of life What are you currently using?

9. Adaptation and Utilization • Agency readiness to adopt telehospice • Felt comfortable utilizing technology, but were less comfortable introducing new technology for use in the patients’ home • Assessment of hospice organizations to accept technology innovation • Perceived as a useful for documenting meeting processes, staying informed of care decisions, and developing more collective care plan goals

10. Adaptation and Utilization • Telehospice interventions now appear to be more readily accepted by nursing and administrative staff members • Assessment of hospice volunteers/coordinators • Have access to computers, Internet, and email at the hospice agency and report routine use of cellular phones and email

11. Current TelehospiceProjects Web-based worksheet for expert feedback in community-based hospice Hospice Education Network (HEN) Internet-based platforms such as Care Pages Support mechanism

12. Evidence base for Telehospice 26 studies identified from indexed databases (Parker Oliver et al, in press) Use Provider attitudes Patient/family values Clinical outcomes (only assessed in 3 studies) Readiness Cost

13. Hospice Philosophy- Relevant Principles • Hospice Interdisciplinary Team Members: Required to meet for plan of care every 15 days • Patient and Family are the unit of care- and member of care plan team • Patient and Family autonomy in decision making

14. Preliminary work • Do Patients and Family routinely participate in the interdisciplinary care plan meetings? • Survey of hospices in Missouri- 0% • National survey of social workers • 75% never had a family attend • 23% seldom • 0% routinely had family attend meeting • Problems preventing attendance • Care needs of patient • Distance to office • Confidentiality as people wait in office • Time involved for team members

15. Intervention: Conceptual Model

16. Designing an Intervention

17. Pilot Research(National Cancer Institute R21) • 2 Phase- Mixed Methods Study • Phase 1 Comparison/Control- 6 months • Administer measures for consenting patients • Videotape team meetings for consenting patients • Phase 2 Intervention • Administer measures • Videotape team meetings • Two hospice programs- total of 5 teams

18. Outcomes Feasibility: Videotape meetings and observe Impact: Interviews Outcomes: Caregiver Pain Medicine Questionnaire Caregiver and Patient Quality of Life

19. R21 Results • Total N= 75 caregivers (Phase 1= 41 Phase 2=34). • 75 caregivers took care of 68 patients

20. R21 Results • Caregiver perceptions of pain medications • The subscale reluctance to report was significantly associated with phase (P < .01) and with baseline score (P < .03). • More likely to report pain and more tolerant of pain medications • No significant difference in administration of pain medication • Quality of life • No significant differences in caregivers or patients

21. Current Project • The ACTIVE Intervention to Improve Hospice Caregiver Pain Management • Multi-site RCT • 500 caregivers • 4 years • Web based video-conferencing R01NR011472 , D. Parker Oliver PI, Wittenberg-Lyles, Co-I

22. ACTIVE: Assessing Caregivers for Team Intervention via Video Encounters • Using secure Internet connection caregivers and patients can join the hospice IDT and participate as a member of the team • Requires yearly subscription to website, high speed Internet and webcam

23. Specific Aims In 2009 there were only 114 active NIH grants in palliative care, less than 1% of the total funded research from NIH Test effectiveness – caregiver’s ability to manage pain Evaluate cost-effectiveness Evaluate potential for translation

24. Example – The Van

25. R 21 Results- Communication Meetings are led primarily by nurses Interpersonal communication and information flow are not always efficient Sometimes a struggle for control rather than collaboration Collaboration-- Requests for clarification and the offering of information Caregivers are active participants and ask numerous questions, especially related to pain control Although pain issues make up more than a third of the team discussions, if caregivers are not present, their perceptions and concerns about pain management issues are not discussed

26. Comparison

27. Example- “Here’s my problem”

28. Caregiver Talk

29. Example – “He’s 92…”

30. Caregiver Interviews It’s almost like they bring the hug. You’re isolated in your own home and family members don’t even come by. And it’s like you have that hand on your shoulder with the phones and the faces…and it made a big difference.

31. Example - Providing support

32. Example – “I feel like I’m lying”

33. Caregiver Interviews • “The nurses that were coming out here were fine…but it was just nice to get other people’s input, too.” • Another caregiver stated that she was impressed to learn that “a whole team of people” worked together to provide care for her husband.

34. And for hospice staff … my mind was narrowed to a point where I thought that the “team” was the team that was here [in the agency office], not realizing and accepting that the team also included the family and patients. Even though I could say it…I didn’t feel it.

35. Staff Interviews • A medical director noted, “…it helps me take better care of the patient. I know what to do better when I can talk to them and see them.” • “It’s really nice to observe how other members of our team interact with [caregivers]. I think we can learn from each other.”

36. Translational Lessons • Recruitment • Special initiatives • Changing technology • Different organizational environments/cultures

37. Findings The intervention is not only feasible, but that it holds promise to change caregiver perceptions of pain management and potentially reduce patient pain. Caregivers can and do talk freely to the hospice team about pain concerns and Hospice staff members are positive about the intervention. The preliminary observation of these encounters is giving insight on ways hospice team members can improve collaboration and overall patient care, including patient safety concerns.

38. Telehospice Problem-Solving Therapy for Hospice Caregivers

39. Problem Solving Therapy PST is defined as “the self-directed cognitive-behavioral process by which a person attempts to identify or discover effective or adaptive solutions for specific problems encountered in everyday living. (D’Zurilla & Nezu, 2007)”

40. ADAPT • A=Attitude • D=Definethe problem • A=Alternatives (generate alternatives for overcoming the identified obstacles and achieving goals) • P=Predict (predict positive and negative consequences and select one) • T=Try Out (implement the solution in real life and monitor its effects) (D’Zurilla & Nezu, 2007)

41. PST and Telehospice Compare face-to-face with videophone delivery Outcome measures included caregiver anxiety, quality of life and problem solving abilities, as well as technical quality of video-sessions and satisfaction of the intervention

42. Results • 126 caregivers were recruited in the study • 77 face-to-face and 49 on videophone • PST delivered via video was not inferior to face to face delivery. • Caregiver quality of life improved and state anxiety decreased under both conditions. • Audiovisual feedback captured by technology may be sufficient

43. Caregiver interviews One participant stated that the videophone provided “a face behind the voice. I really enjoyed it… You were here… It was a personal touch. Although you did make me fix my hair so early in the morning.”

44. Caregiver interviews “At first I thought it would not make a difference… I really liked it more than I thought I would. This made it homey, much more personal. You are here with me and I am talking to you.”

45. Caregiver interviews One of them commented on the slight time delay between audio and video (“it was distracting at times in the beginning, because of the time lapse”) and the other did not see an added element compared to a regular phone (“it was nice, but I think I can do this just as well without the picture”). One participant who experienced problems in establishing a connection stated “when it works it is great, but I have old lines here in the house, and sometimes it didn’t work.”

46. Additional Research Questions Who benefits most from the intervention and how can we identify them upon admission? How can staff express empathy over virtual media? Do long distance caregivers and residents in the nursing home have additional benefits? What is the cost of the intervention to hospices? How does the intervention need to be modified to translate into everyday practice for hospice providers?

47. Things to think about….. Would incentive payments increase the use of telehospice? What are the ethical issues you see in the use of telehospice? Is it feasible for your hospice to implement the ACTIVE intervention- why or why not?

48. Thank you! www.telehospice-project.org Facebook: The TelehospiceProject Email: elaine.lyles@uky.edu