Hospitalization-Related Hospice Disenrollment Where Can Palliative Care Make a Difference?

Transcription

1 Hospitalization-Related Hospice Disenrollment Where Can Palliative Care Make a Difference? Maria A. Cantu, MD Assistant Professor Division of Geriatrics, Gerontology, and Palliative Medicine University of Texas Health Science Center San Antonio San Antonio, Texas cantum8@uthscsa.edu

2 Objectives Understand the practice and delivery of the Medicare Hospice Benefit Navigate a roadmap of hospice disenrollment due to hospitalization Explore the perceptions of caregivers, hospice interdisciplinary team, emergency medicine service providers, and emergency department providers Propose opportunities for palliative care involvement along disenrollment transition of care points

3 Hospice Definition Hospice is a model for quality compassionate care for people facing a life-limiting illness Hospice provides expert medical care, pain management, emotional and spiritual support, and family support NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, 2017.

4 Hospice Care in the United States NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, 2017.

5 Hospice Benefit Hospice care is delivered mostly at home Other locations include nursing homes and residence facilities The Medicare benefit allows for 4 different levels of care: Routine home care (largest component of care 98.0%) General inpatient care (0.2%) Continuous home care (0.3%) Inpatient respite care (1.5%) NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, 2017.

6 Hospice Care Delivery NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, 2017.

7 Caregivers Role Hospice care is mostly provided by informal caregivers Spouses Adult children Relatives Estimates show that half a million caregivers in the United States provide informal care to their loved ones in the last year of life NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, 2017.

8 Hospice Disenrollment Approximately 1 out of 5 patients disenrolls from the hospice benefit Up to 25% of those disenrolled patients return to the hospital within 30 days of discharge from hospice Disenrollments can lead to poor care transitions and unwanted care Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J

9 Hospice Disenrollment Reasons for hospice disenrollment Patient preferences Dissatisfaction with hospice care Admission to a hospital that does not have a hospice contract Becoming ineligible for the Medicare Hospice Benefit Carlson MDA, Herrin J, Du Q, et al. Impact of Hospice Disenrollment on Health Care Use and Medicare Expenditures for Patients With Cancer.

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11 Patients and Methods Retrospective Medicare claims data analysis of 90,826 patients who died with a primary diagnosis of cancer between 1998 and 2002 age 66 years or older used hospice during any part of the 6 months before death Compared patients who disenrolled from hospice with those who remained with hospice until death Rate of ED use ICU use Inpatient hospitalization Hospital death Carlson MDA, Herrin J, Du Q, et al. Impact of Hospice Disenrollment on Health Care Use and Medicare Expenditures for Patients With Cancer.

12 Disenrollees and Time of Disenrollment 9,936 patients (10.9%) disenrolled from hospice before death Median days from hospice enrollment to disenrollment 28 days Median days from hospice disenrollment to death 24 days 57% of disenrollees died within 30 days of disenrollment Carlson MDA, Herrin J, Du Q, et al. Impact of Hospice Disenrollment on Health Care Use and Medicare Expenditures for Patients With Cancer. J Clin Oncol. 2010; 28:

13 Health Care Use of Hospice Disenrollees Higher health care use until death More ED admissions (33.9% vs 3.1%; P<.001) More ICU admissions (5.7% vs 0.2%; P<.001) More hospital admissions (29.8% vs 1.6%; P<.001) Longer length of stays when admitted to hospitals (19.3 days vs 6.7 days; P<.001) Higher average Medicare expenditures of $2,475 higher (P<.001) Carlson MDA, Herrin J, Du Q, et al. Impact of Hospice Disenrollment on Health Care Use and Medicare Expenditures for Patients With Cancer. J Clin Oncol. 2010; 28:

14 Roadmap of Hospice Disenrollment

15 Hospice Disenrollment Roadmap

16 Caregivers

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18 Methods and Participants Cross-sectional study from August 2014-February 2015 VNSNY Hospice and Palliative Care generated a weekly list of patients who were disenrolled and hospitalized in an acute care hospital Collected hospice patient information Demographics Length of stay in hospice Whether there was a nursing visit one day before disenrollment Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J

19 Intervention Letters were mailed to the caregivers within 1 week of the list generation that included the aims of the study and informed the caregiver that they would be receiving a phone call within 2-4 weeks Study used content analysis from phone interviews with primary caregivers Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J

20 Phone Call Interview Questions Relationship of the caregiver to the patient Factors leading to transition to the hospital 911 called and/or hospice and which was called first Caregiver presence leading up to the hospitalization Factors leading to the patient s hospitalization Home hospice care challenges that may have contributed to hospitalization Reasons why 911 was called Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J

21 Participants 106 Caregivers called 2 phone attempts during business hours 63 Caregivers reached Caregivers provided verbal consent 38 Caregivers interviewed Non- English speakers were excluded Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J

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23 Caregiver Characteristics Caregiver relationship to patient Adult child - 55% Non-immediate relative - 18% Spouse - 16% Friend - 8% Parent - 3% 60% of caregivers were present during the events leading to hospitalization Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J

24 Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J

25 Caregivers Initial Response 53% of caregivers called 911 BEFORE calling hospice Of those that did call hospice first, 50% of those still called % of hospitalizations were caregiver driven, however approximately 25% of respondents reported that the hospice provider or community physician initiated the transition Usually after assessment and usually after an injury Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J

26 Hospice Evaluation

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28 Hospice Providers Perspectives Same group interviewed IDT team members Team managers Physicians Nurses Social workers Spiritual care counselors Home health aides They held focus groups and found 8 key themes from the transcripts Phongtankuel V, Scherban BA, Reid MC, et al. Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives. J Palliat Med

29 Hospice Perspective Key Themes Not Fully Understanding Hospice (100%) Caregiver burden (100%) Distressing/difficult-to-manage signs and symptoms (100%) Caregivers reluctance to administer morphine (100%) Phongtankuel V, Scherban BA, Reid MC, et al. Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives. J Palliat

30 Hospice Perspective Key Themes 911 s faster response time compared to hospice (100%) Lack of clarity about disease prognosis (86%) Desire to continue receiving care from nonhospice physicians and hospital (86%) Families difficulty accepting patients mortality (86%) Phongtankuel V, Scherban BA, Reid MC, et al. Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives. J Palliat

31 EMS Evaluation

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33 Methods and Participants Cross-sectional study of emergency medical service providers at a regional EMS conference in Atlanta, Georgia Surveyed 182 EMS providers with a 100% response rate Donnelly CB, Armstrong KA, Perkins MM, Moulia D, Quest TE, Yancey AH. Emergency Medical Services Provider Experiences of Hospice Care. Prehosp Emerg Care. 2017; Early

34 Survey Results 84.1% had cared for a hospice patient one or more times 29% reported receiving formal training and education in hospice care 36% incorrectly reported that hospice care requires a DNR order Donnelly CB, Armstrong KA, Perkins MM, Moulia D, Quest TE, Yancey AH. Emergency Medical Services Provider Experiences of Hospice Care. Prehosp Emerg Care. 2017; Early

35 EMS Reported Challenging Areas for Hospice Patients Interpersonal communication with hospice patient s families End-of life documentation, its portability, and/or dissemination Interpersonal communication of EMS providers with hospice and ED providers Educational deficits Medic emotional distress Donnelly CB, Armstrong KA, Perkins MM, Moulia D, Quest TE, Yancey AH. Emergency Medical Services Provider Experiences of Hospice Care. Prehosp Emerg Care. 2017; Early

36 Emergency Department Evaluation

37 ED Provider Barriers to Providing Palliative Care Chaotic environment Competing demands Long wait times Communication challenges Inadequate training in pain management Lamba S, Quest TE. Hospice Care and the Emergency Department: Rules, Regulations, and Referrals. Ann Emerg Med; 57:

38 ED Perceptive Challenges with Hospice Patients Patient and families understanding of hospice Operating with incomplete knowledge of patient s medical condition Missing information about the goals of care Absent medical records Lack of collateral information from family or patient s inability to provide information Physician difficulty honoring end of life wishes Zieske M, Abbott J. Ethics Seminar: The Hospice Patient in the ED: An Ethical Approach to Understanding Barriers and Improving Care. Acad

39 Where Can Palliative Care Make a Difference?

40 Goals of Care Communication

41 Goals of Care Communication Palliative care skill in communicating serious news and discussing transitions in goals of care Shift focus from cure to management Shift focus from quantity to quality Shift focus to preparing for death Discussing prognosis when time is short O Neill LB, Back AL. What are the key elements of having a conversation about setting goals and communicating serious news? In: Goldstein N, Morrison RS. Evidence-Based Practice of Palliative

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43 Preferences at End of Life Cross-sectional, stratified random national survey Seriously ill patients Recently bereaved family members Physicians Other care providers (nurses, social workers, chaplains, and hospice volunteers) Participants were given a survey of 44 attributes of experience at the end of life Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care

44 Preferences at End of Life All participants rated highly: Pain and symptom management Feeling prepared to die Believing family is prepared for one s death Knowing what to expect physically Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care

45 Also rated highly amongst all Health care professional specific: Receiving care from one s personal physician Trusting one s physician Having a nurse with whom one feels comfortable Knowing that one's physician is comfortable talking about death and dying Having a physician with whom one can discuss personal fears Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care

46 Important Preferences for Patients, Less so for Physicians Being mentally aware Having funeral arrangements planned Feeling that one s life was complete Not being a burden on family or society Coming to peace with God and praying Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care

47 Preferences at End of Life When comparing preselected attributes Freedom of pain was the most important by all Dying at home was the least important in the relative ranking by all groups except other care providers who ranked it 2 nd to last Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care

48 Collaboration with EMS

49 EMS Education and Collaboration Curriculum on grief perspective Curriculum can include education of the Medicare Hospice Benefit Education on advanced care planning and techniques to care for the grieving family Collaboration with hospice in utilizing mobile integrated healthcare and community paramedicine Donnelly CB, Armstrong KA, Perkins MM, Moulia D, Quest TE, Yancey AH. Emergency Medical Services Provider Experiences of Hospice Care. Prehosp Emerg Care. 2017; Early

50 Emergency Department Integration

51 CAPC IPAL-EM Center to Advance Palliative Care (CAPC) created a collaborative project of Improving Palliative Care in Emergency Medicine (IPAL-EM) Online site with resources based on program stage of development Includes needs assessment, how to get buy-in, trigger screening tools Targets both Palliative Care team members as well as Emergency Department team members

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53 Summary of Themes Establish clear goals of care with documentation Communicate and collaborate with EMS and ED Support patient and family in understanding diagnosis, hospice care, and what to do if status changes Education initiative in training palliative care for non-palliative providers

54 Are there other ways palliative care can be involved in this disenrollment roadmap?

55 THANK YOU!

56 References Carlson MDA, Herrin J, Du Q, et al. Impact of Hospice Disenrollment on Health Care Use and Medicare Expenditures for Patients With Cancer. J Clin Oncol. 2010; 28: Donnelly CB, Armstrong KA, Perkins MM, Moulia D, Quest TE, Yancey AH. Emergency Medical Services Provider Experiences of Hospice Care. Prehosp Emerg Care. 2017; Early Online:1 7. Higginson IJ, Daveson BA, Morrison RS, Yi D, Meier D, Smith M, Ryan K, McQuillan R, Johnston BM, Normand C, BuildCARE. Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries. BMC Geriatrics. 2017; 17:271. Lamba S, Quest TE. Hospice Care and the Emergency Department: Rules, Regulations, and Referrals. Ann Emerg Med; 57: NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, September O Neill LB, Back AL. What are the key elements of having a conversation about setting goals and communicating serious news? In: Goldstein N, Morrison RS. Evidence-Based Practice of Palliative Medicine. Philadelpia:Elsevier Saunders; p Smith AK, Fisher J, Schonberg MA, et al. Am I doing the right thing? Provider perspectives on improving palliative care in the emergency department. Ann Emerg Med. 2009;54: Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000; 284: Teno JM, Gozalo PL, Bynum JPQ, Leland NE, Miller SC, Morden NE, Scupp T, Goodman DC, Mor V. Change in End-of-Life Care for Medicare Beneficiaries. 2013; 309: Phongtankuel V, Paustian S, Reid MC, et al. Events Leading to Hospital- Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers Perspectives. J Palliat Med : Phongtankuel V, Scherban BA, Reid MC, et al. Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives. J Palliat Med ; 19: Zieske M, Abbott J. Ethics Seminar: The Hospice Patient in the ED: An Ethical Approach to Understanding Barriers and Improving Care. Acad Emerg Med. 2011; 18:

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58 Caregiver Reasons for seeking emergency care consider taking out Acute event Uncontrolled symptoms Imminent death Inability to provide care Caregiver burden Family difficulty in accepting patients mortality

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60 Number of Hospice Days

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64 New York Times Opinion article Writer speaks of her father s last days of life with pancreatic cancer on home hospice He became acutely symptomatic with a cascade of letdowns for family (delay in crisis care, family uncertainty in medication administration, delay in pain treatment) Brown ends saying: Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best. But then I think: He deserved to have both.

65 Hospice Providers Perspectives consider removing

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67 In one study, 76% of home hospice patients were at home until their death 24% were transferred to a facility 4% were hospital facilities 19% was to hospice facility

68 Next Steps Research with Dr. Melissa Aldridge exploring Medicare Hospice Data from enrollees who went to the emergency room and were subsequently admitted to the hospital Exploring trends in primary hospice diagnosis, admission diagnosis, ICU utilization based on diagnosis and procedural charges