Palliative and Supportive Care: Telehealth Initiatives in Alabama

Transcription

1 Palliative and Supportive Care: Telehealth Initiatives in Alabama Rodney Tucker, MD MMM Director, UAB Center for Palliative and Supportive Care

2 Objectives Define palliative and supportive care (PSC) along with benefits and delivery challenges Explain the current state of access to palliative care services in Alabama Explore current and future projects using telehealth to spread and scale palliative care to vulnerable populations in Alabama and the Southeast Page 2

3 Disclosure I have no proprietary, financial or other personal interest of any nature in any product, service and/or company discussed in this session. Acknowledgments to my team members that are here in the audience whose work I will represent today Page 3

4 The World Health Organization has declared Palliative Care as a human right Specialized medical care for people with serious illness. Focuses on improving quality of life for patients of any age or diagnosis and their families. Provides relief of symptoms, pain and stress of a serious illness Provided by a team of doctors, nurses and other specialists such as social work, pastoral care, counseling and psychology, etc. Work together with patient s other clinicians as an extra layer of support. Provided along with curative treatment. Page 4

5 Supportive Care All aspects of previous definition of palliative care In most instances more closely associated with ambulatory settings Page 5

6 Other phrases to describe PSC Restoring the art of healing to the science of curing Page 6

7 Other phrases to describe PSC Restoring the art of healing to the science of curing Providing whole person care focused on quality and dignity Page 7

8 Other phrases to describe PSC Restoring the art of healing to the science of curing Providing whole person care focused on quality and dignity The ultimate in personalized medicine Page 8

9 Other phrases to describe PSC Restoring the art of healing to the science of curing Providing whole person care focused on quality and dignity The ultimate in personalized medicine Matching evidence with preference Page 9

10 What is Palliative Care? Page 10

11 Once Informed Page 11

12 Current State Nationally Palliative and Supportive care (PSC) is fastest growing medical specialty in US >150% increase in hospital based programs over past years Large majority of hospitals over 250 beds have some form of PSC consult service Diagnosis of patients accessing PSC and Hospice continues to evolve away from majority cancer as in the past Page 12

13 Access to Hospital-based Palliative Care Page 13

14 Three Historic Factors Inadequate attention to symptom burden and choice as disease progresses (Dr. K) Page 14

15 Three Historic Factors Inadequate attention to symptom burden and choice as disease progresses (Dr. K) AIDS Page 15

16 Three Historic Factors Inadequate attention to symptom burden and choice as disease progresses (Dr. K) AIDS Aging of the population Page 16

17 PSC vs Hospice Similarities Team approach to care Patient and family Centered Symptom management Four domains of suffering Goal directed Can be delivered in several locations Page 17

18 PSC vs Hospice Differences Strict eligibility criteria Different levels of care 24 hour availability in hospice Different payment mechanisms Hospice focus mainly in last 6 months of life Page 18

19 What are Patients Experiencing? Avoidable Suffering Due to Dysfunction in Care System Unavoidable Suffering Due to Treatment Suffering Due to Diagnosis Tom Lee, MD CMO Press Ganey Page 19

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21 Improving the U.S. Health Care System Requires Simultaneous Pursuit of Three Aims: Improving the experience of care, Improving the health of populations, and Reducing per capita costs of health care. Berwick DM, Nolan TW, Whittington, J. Health Aff May 2008 vol. 27 no Page 21

22 PSC is uniquely poised to achieve the triple aim Outcomes of Palliative Care: Reduction in symptom burden Care concordant with pt/family wishes Improved patient and family satisfaction Reduced costs Copyright 2008 Center to Advance Palliative Care. Reproduction by permission only. 22 Page 22

23 Challenges and Barriers Education re: diff between hospice and PSC Cultural beliefs re: dying (patients and providers) Provider shortage Difficulty in broadening the evidence base Rural locales and access Payment mechanisms Page 23

24 PC Access By Region Page 24

25 Complex Barriers to Providing PC in Rural Areas Patient Confluence of poverty, education/health literacy, higher morbidity/mortality rates Cultural/spiritual beliefs & Mistrust of medical system & outsiders Transportation issues Provider Social determinants of health are key factors responsible for disparities in palliative care access in rural areas. Small, rural hospitals unable to support PC team/services (only 22% hospitals with <50 beds have PC) To date palliative care models have reflected a middle class, white, academic culture. Hence, neglecting the unique aspects of rural culture has limited access & acceptability. Few palliative/dying patients in rural practices Limited availability of palliative & culturally-based end-of-life care education Trust, Fear of change Practice/policy Poor communication/coordination between academic and rural community settings Incentives to keep patients in local community (e.g. critical access hospitals) Few evidence-based best practice models for rural palliative care Page 25

26 Interdisciplinary team expertise Community-based Palliative Care Support for transitions of care for high risk patients across sites of care Active care management to meet patients and families needs and thus prevent unnecessary inpatient/ed utilization Filling gaps in existing community services or coordinating the gaps Page 26

27 Models of Community-based Palliative Care Clinic-based models Home-based palliative care Community entities parish nurses, community health workers, navigators Nursing homes, assisted living Telehealth models Hospice Page 27

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29 Current telehealth initiatives ENABLE Community-Developed, Culturally-Based PC Tele-Consult Program for African American and White Rural Southern Elders with a Lifelimiting Illness REACH-PC Community (Virtual) Access to Palliative Expertise or CAPE Page 29

30 Telehealth and Virtual Delivery Page 30

31 Conceptual Foundation of ENABLE* Wagner s Chronic Illness Care Model Adapted for Palliative Care *EDUCATE, NURTURE, ADVISE, BEFORE LIFE ENDS Consultation per NCP Guidelines Page 31

32 ENABLE IMPROVES PATIENT AND CAREGIVER-REPORTED OUTCOMES Pts had improved QOL, mood, and trends towards improved symptoms & survival No difference in PROs; Early pts had 1 yr. survival Caregivers had: depressed mood stress burden (trend) QOL

33 Early Palliative Care ENABLE Trials (Cancer) From Stakeholder Need to Effectiveness & Implementation Research Stakeholder Development Effectiveness Research Implementation Research WHO Guidelines, SUPPORT Study Results, Patient, Family, Clinician Focus Groups ENABLE II Solid Tumor/Telehealth Efficacy RCT (NCI) ENABLE IV 4 site (AL, SC) Rural Implementation (ACS) Project ENABLE In-Person Demonstration Project (RWJF) ENABLE III Solid Tumor, Heme & Caregiver Effectiveness RCT (NINR) ENABLE-NCORP 48 site VLC vs TA D&I Trial (NCI) (2018, under review)

34 Early Palliative Care ENABLE Trials (Non-Cancer) From Translation & Formative Evaluation to Effectiveness & Implementation Research Translational Evaluation AHA Guidelines, Literature & Chart Reviews, Patient, Family, Clinician Focus Groups ENABLE CHF-PC Formative Evaluation Pilot (Dartmouth SYNERGY) Effectiveness Research ENABLE CHF-PC 2-site (NH/AL) Pilot (NPCRC) ENABLE CHF-PC Effectiveness RCT (NINR) MOST, Hybrid & Implementation Research ENABLE COPD (EPIC) Single Arm Pilot Iyer (UAB PREP & PCOR K 12) ENABLE CORNERSTONE Cancer Caregivers Dionne-Odom (NINR K99 NR015903)

35 ENABLE INCREASES ACCESS TO SPECIALTY PALLIATIVE CARE REACH OF NINR R01 ENABLE CHF PC (N=415 PARTICIPANTS) LOCATIONS

36 Telehealth and Virtual Delivery

37 Developing a Culturally-Based Palliative Care Consult Program In Partnership with Rural African American and White Community Members A Program By the Community for the Community PI: Ronit Elk, PhD

38 There are no culturally-based models of palliative care Rural South US- no culturally-based model of care. Rural South US- African American and White culture differ

39 Aims of this Community-based Study ( ) Aim 1: Create a Palliative Care Consult Program that is

40 Culturally sensitive By understanding the specific needs, preferences & culture of Beaufort SC elder African American and White community members

41 Aim 2: Develop it in partnership with the Community

42 Aim 3 Deliver this Culturally-based Palliative Care Consult Program at Beaufort Memorial Hospital in Beaufort SC

43 Aim 4: Deliver this Culturally-based Palliative Care Consult program to elders with serious illness via telehealth.

44 Community Advisory Group Community Advisory Group Community Advisory Group Study Phases: Phase 1 Community Focus Groups Phase 2 Community Focus Groups Phase 3: Culturally-based Palliative Care Program delivered via Telehealth

45 Phase 1: Focus Groups Based on our Community Advisory Group s recommendation, separate focus groups for African American and White community members were held

46 The questions asked of the focus group members All pertained to the healthcare that their loved ones had received and what they liked and didn t like about it

47 One of the questions asked was about using telehealth to do the Findings: palliative care consult The majority in both ethnic groups had not heard of telehealth and were very wary of it The majority in both ethnic groups said that elders would not want to communicate with doctors in this way

48 Phase 2: Program Development Principles: Equal Participation The PC Program Development Team PC Research Group Hospital Staff Community Members (CAG)

49 How are culturally tailored preferences incorporated into an evidence-based PC program? 1. Every Focus Group Result presented to Community Group (in monthly meetings over several months) 2A. Community members discuss the meaning of each finding for their [AA] [W] community [especially when differences between groups] 2B. The culturally-appropriate way their community [AA] [W] prefers that aspect of care. 4. Team discusses and finalizes these culturally appropriate recommendations 3. Palliative Care clinician describes how he/she will incorporate these preferences within the evidence-based PC program principles 5. Written into Study Protocol that the Study PC Team will follow during Implementation

50 Phase 3: In this phase testing to see if the program would work

51 Advice of the Community Advisory Group Since many people in both ethnic groups were wary of telehealth, our community Advisory Group made 2 suggestions that we implemented: 1. Create a flyer with pictures explaining telehealth 2. Let Community Advisory Group members meet first with the patients/family first and explain the study and telehealth to them to help them feel comfortable

52 Results Nine patients/family met with the palliative care physician via telehealth. All reported a very high level of satisfaction with the palliative care doctor for: His availability during the consult even though it was via telehealth The way in with the palliative care doctor respected the dignity of the patient and family during the consult

53 Next Steps Ronit Elk, PhD and Marie Bakitas, DNSc are Principal Investigators of: A Randomized Clinical Trial to test the efficacy of this intervention in AL, MS and SC Community-Developed, Culturally-Based PC Tele-Consult Program for African American and White Rural Southern Elders with a Lifelimiting Illness

54 Comparative Effectiveness of Early Integrated Telehealth versus In-Person Palliative Care for Patients with Advanced Lung Cancer REACH PC

55 Early Integrated Palliative and Oncology Care Model In-person monthly visits with palliative care from diagnosis until death. Visits are conducted on the same day as oncology visits to enable patients to see both clinicians without an extra trip to the clinic or hospital. Occasionally, the oncology and palliative care clinicians conduct the patients visit together.

56 Effects of Early Integrated Palliative Care on Patient Reported Outcomes Quality of life Depression and Anxiety Temel NEJM 363 (8) 2010

57 Impact of Early Integrated Palliative Care on Prognostic Understanding My cancer is curable: Yes or No Palliative care v Standard care 82.5% v 59.6%, p=0.02 Temel JCO 29 (17) 2011

58 Impact of Early Integrated Palliative Care on EOL Communication and Coping Measure Usual Care Early PC Discussed wishes about the care you would want to receive if you are dying 14.5% 30.2% <0.01 P Knowing about prognosis has been very/extremely helpful for - Making decisions about treatment - Coping with the disease 89.8% 83.6% 96.5% 97.3% 0.04 <0.01 Temel JCO 35 (8) 2017

59 Study Rationale Despite the strong evidence-base for early integrated palliative and oncology care, few institutions have sufficient palliative care clinicians, resources, or support staff to enable monthly visits with patients. Monthly visits are also a burden on patients and caregivers due to time and transportation costs.

60 Telehealth As A Possible Solution The practice of medical care using communication technology ( telehealth ) increases access and efficiency when staff and resources are limited. Telehealth also enables clinicians to perform virtual house calls. Studies of virtual house calls using video visits for patients with chronic illnesses have demonstrated the feasibility, acceptability, and efficacy of this delivery model.

61 Study Aims To determine whether telehealth PC is as effective as in-person PC for improving: Patient s QOL and mood symptoms Patient-clinician communication about EOL care preferences Patient s length of stay in hospice To compare the effect of telehealth versus inperson PC on caregivers participation in study visits, QOL, and mood symptoms To compare patient and caregiver satisfaction with telehealth versus in-person PC

62 Study Funding and Conduct Five-year award from the Patient Centered Outcomes Research Institute (PCORI) to conduct a national, multi-site, randomized trial of early integrated palliative care delivered in-person versus via videoconferencing. The study is being conducted in collaboration with the Palliative Care Research Cooperative Group.

63 1. Massachusetts General Hospital 2. University of Virginia 3. University of Colorado 4. Wake Forest University Participating Sites 5. University of North Carolina Chapel Hill 6. University of TX Austin 7. Vanderbilt University 8. Rush University Medical Center 9. Emory University 10. University of TX Southwestern Medical Center 11. University of Michigan 12. University of Kansas Medical Center 13. Dana-Farber Cancer Institute 14. City of Hope 15. Johns Hopkins University 16. University of California San Francisco 17. Mayo Clinic 18. University of Wisconsin 19.University of Alabama Birmingham 20. Cleveland Clinic

64 Study Timeline Time Frame January-May 2018 June 2018-June 2021 June 2021-December 2022 Study Activity IRB approval Study training at MGH Finalize site study procedures Site study training Enroll 62 patient participants (10 patients in the first six months) Complete study procedures Collect participant-reported data

65 Outcome Measures Patients FACT-Lung Hospital Anxiety and Depression Scale (HADS) Patient Health Questionnaire-9 (PHQ9) Brief Cope Prognostic and Treatment Perceptions Questionnaire (PTPQ) Satisfaction with Care/ Delivery Caregivers Caregiver Oncology QOL (CARGOQOL) HADS PTPQ Satisfaction with Care/Delivery After death assessment

66 Community Virtual Access to Palliative Expertise (CAPE) Developing through the UAB Center for Palliative and Supportive Care Established as a three year philanthropically funded program to build the infrastructure and operations to promote both in person house calls and virtual visits between patients and providers Will also allow virtual consultation to other providers (hospices, medical directors, etc.) with complicated patients Page 66

67 Care Continuum Hospital PCCU, Consult Svc Clinics Supportive Care ED Triggers, Early Identification Home, In the Community Palliative and Supportive Care Impact

68 Partnerships and Alignment The key to spreading PSC and taking it to the next level is partnerships! Providers and the community Hospice and hospitals and cancer centers Health Departments and hub providers/expertise in telehealth Home care and hospice and PSC hub SNF and ALF and all the above Academic and non-academic facilities Communities of faith Page 68

69 Partnerships and Alignment The key to spreading PSC and taking it to the next level is partnerships! AND linking providers with patients in the patients environment Page 69

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71 For more information: Web address: Contact: Stacey Miller Early Bird Registration Rates end September 30! There is limited space available sign up now so you don t miss out on this fabulous opportunity.

72 Questions or for more information: Rodney Tucker, MD Page 72