Current Practices for Supporting Patients and Families Confronting Live Discharge from Hospice STEPHANIE P. WLADKOWSKI, PHD, LMSW, ACHP-SW swladkow@emich.edu TONI D. DESTER, MSW CANDIDATE, 2017
ACKNOWLEDGEMENTS Eastern Michigan University Provost s New Faculty Award 2015-2016 Cara L. Wallace, PhD, LMSW Saint Louis University
STUDY AIM To better understand the current practices of live discharge from hospice and the perceptions held by hospice social workers
BACKGROUND: Hospice An estimated 1.6-1.7 million people received hospice services in 2014 (NHPCO, 2015) 63.4% with non-cancer primary diagnosis: Dementia (14.8%), Heart Disease (14.7%), Lung Disease (9.3%), Stroke or Coma (6.4%) In 2011, approximately 278,000 patients were discharged due to achieving an extended prognosis
BACKGROUND: Care Transitions Care transitions present challenges for caregivers: Not feeling prepared for the transition (Byrne, et al., 2011), for caregiving tasks and equipment (Levine, et al., 2010) Lack of communication or difficulty obtaining information on medical aspect of care (Davies & Nolan, 2004) Limited access to supportive resources (Byrne, et al., 2011) Grief process for those providing care to adults with dementia is complex and transitions impact grief process (Wladkowski, 2016) 5
BACKGROUND: Discharge Planning Medicare guidelines of discharge planning: Hospice clinicians must prepare individuals and family members in the event of stabilization or if the patient is no longer able to be certified as terminally ill (CMS, 418.26(d) Begins at enrollment and includes assessing the need for additional supportive services (NHPCO, 2015) It is unknown how clinicians prepare caregivers for a live discharge and if an assessment of needs is completed
STUDY SAMPLING FRAME Non-random, purposeful, convenience sampling over 4 months Inclusion Criteria: Hospice social worker with at least 3 months experience Michigan and Ohio
STUDY PARTICIPANTS N=8 Hospice Social Workers Gender Female= 8 Age 28-60 (mean=38) Ethnicity Social Work Status Hospice Career Caucasian/White/non Hispanic= 8 LMSW= 5 MSW= 1 LBSW=1 LLBSW= 1 1-2 years= 3 >5 years= 2 2-3 years= 3 Employment Status Location of Care Hospice Agency Status 32+ hours/week= 7 20-32 hours/week= 1 Private Residence= 7 Independent Living Facility= 5 Assisted Living Facility= 6 For-Profit= 1 Not for profit= 5 Hospital system= 1 Home Health= 2 Skilled Nursing Facility= 6 Inpatient/Hospital= 6
DATA COLLECTION Recruited through hospice agencies and professional development events Semi-structured, audio-recorded interviews 5 in-person, 3 over telephone Average 37 minutes in length All interviews transcribed and transcripts reviewed against recording.
DATA ANALYSIS Thematic analysis approach (Braun & Clarke, 2006) Individually open coded, creating an evolving coding schematic After initial coding, each transcript and its codes were reviewed against the initial framework Reliability and validity measures: Coding audit reviewed for application of codes across transcripts No outliers or unusual patterns identified
PRELIMINARY DATA CODING SCHEMATIC THEME OPERATIONAL DEFINITION SUB THEMES 1. Live Discharge Processes Ways social workers presented live discharge to families, how live discharge plays out 2. Main Challenges Identified challenges of the discharge process, supporting individuals and families, and the impact of the live discharge 3. Social Worker Role 4. Views of Live Discharge Specific tasks/responsibilities of social workers within live discharge process Expressed views of the live discharge process, the impact on individuals and families, suggestions for practice 1. Assessment 2. Approach 3. Follow-up 1. Eligibility requirements 2. Specific needs of individuals & families post-hospice 1. Coordinator 2. Buffer 1. Role of Resources & Support 2. De e tia & Alzhei er s disease 3. Loss and Abandonment 4. Suggestions
LIVE DISCHARGE PROCESSES ASSESSMENT Ongoing eligibility, Needed services, Timing We just do a social work visit or I ll document her reaction to the conversation and then follow up on that. As far as paperwork and all that stuff and even looking at assessment and stuff like that, it s still kind of run of the mill in some ways. There is a process form written up by our agency, but you can t go by it.
LIVE DISCHARGE PROCESSES APPROACH Ways social workers word the live discharge or offer support We have a list of [resources] on hand in our desk we provide each family with a guide book when we do an admission. When we discharge somebody, they can do whatever they want with the book. Real positive, she s great! or I like to say graduating. It s hearing them, giving them the opportunity to talk about it, and educating them as best as we can on what to do about it. And always, ALWAYS, encouraging them to appeal.
LIVE DISCHARGE PROCESSES FOLLOW UP Examples of follow up care or policies by individuals or agencies We don t have a system for follow up plan for live discharges. Like what happens after? I guess it s just something that just didn t cross my radar. Between the time they discharge and the time of death, if that happens there is no follow-up care, but once they do pass on we will kind of follow up with the family to see if there is anything we can do. We don t. The only time we hear what happens is usually when someone comes back.
MAIN CHALLENGES ELIGIBILITY REQUIREMENTS Examples related to Medicare guidelines, understanding dying process Are they dying or aren t they? Because essentially that s what hospice means to the layman; that s exactly what it means, dying/not dying. And so it s hard for people to have that light switch of dying not dying, not dying fast enough, all those kind of things.
MAIN CHALLENGES SPECIFIC NEEDS Identified resources needed by patients and families prior to discharge Equipment needs. Safety. Support system. Access to doctors, physicians, access to medical resources. Ability to get prescriptions, and to get appointments and things like that. You can t just say, well you don t qualify for hospice anymore if there s all of a sudden going to create a barrier to medication because they can t afford it. How do you do that now?
SOCIAL WORKER ROLE COORDINATOR Tasks related to coordinated services, resources, within the team, etc. We want to make sure that before we discharge, that they are going to be well taken care of with either the continuing services or make a referral to a home care or possibly another agency to provide care that might still be needed for the patient. The role of social workers is that we just take that Medicare form and have the family sign that.
SOCIAL WORKER ROLE BUFFER Role within the team, between care providers It s so important for us to be that buffer, to get those resources for the family members so they don t feel like we are abandoning them when they already have all of these grief and trauma issues. We re the mediators we can t make services come where there isn t. I always tell my nurses: I m good, but my cape and my wand are in the shop. My goodness only lasts so much.
VIEWS OF LIVE DISCHARGE ROLE OF RESOURCES AND SUPPORT Negative and positive impact of resources and support related to live discharges Someone who had very challenging insurance to work with and they required 24 hour care Finding someone a placement with insurance that nobody wants to touch. She had multiple daughters, I think four, and so they were very involved in her care and the family was very accepting of that because they had been through [live discharge] before, they saw she was doing well, she has dementia they were just very accepting of it and we ll let you know when she declines again (laughs) love for you to come back!
VIEWS OF LIVE DISCHARGE DEMENTIA & ALZHEIMER S DISEASE Discharge issues related to individuals with Dementia or Alzheimer s disease and their caregivers It actually becomes more stressful and upsetting because it s an ongoing burden of the care, even though they love this person. They thought they were coming to some closure so it reopens some of those wounds. And then you do have people who have relief and excitement and joy that we are going to have more time than we expected.
VIEWS OF LIVE DISCHARGE LOSS & ABANDONMENT Examples of loss from the professional s experience and their perception of family s experience We talk up these hospice services so much and then we yank them away. It s really doing a disservice to these people. We ve all talked them into that their loved one s dying and now we re saying, Just kidding, it s not happening right now, but in a week or in three years, or whatever, give us a call and we ll do this all over again.
VIEWS OF LIVE DISCHARGE SUGGESTIONS Formal Assessment, Follow-up, Discharge summary We should have some policy as far as following up, checking and make sure the family is ok. A form, a discharge summary or assessment outlining where they [resources] are in different areas. I would love to have better abilities to hand my person off to someone in a similar role to mine.
DISCUSSION Inconsistencies in processes across organizations Eligibility and current guidelines remain a challenge Variation in Role of Social Work Lack of framework Assessment of needs at discharge Follow-up Social justice issue Health disparities Hospice can not be replicated
STRENGTHS & LIMITATIONS STRENGTHS Data represented range in locations of care Both for- and non-profit hospice agencies LIMITATIONS Preliminary results Small sample size Raises more questions of the needs for patients/families and professional supports Potential for limited variance in agency
IMPLICATIONS AND NEXT STEPS Highlights the lack of continuity in our discharge processes Stresses the role of social worker as advocate Emphasizes need for assessment framework Larger-scale study
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