The New Center for Palliative Care at the Ithaca College Gerontology Institute

Transcription

1 The New Center for Palliative Care at the Ithaca College Gerontology Institute Barbara Ganzel, Ph.D., LMSW, Gerontology Institute Director Elizabeth Bergman, Ph.D., Associate Professor Center for Palliative Care co-directors

2 The Center for Palliative Care at the Ithaca College Gerontology Institute Mission Promote and advance palliative care in rural communities through research, education, and community development

3 Overview Palliative Care: Why? What is it? Survey: What do we know? Palliative Care Innovations: Moving Upstream Trauma-Informed Palliative Care Mental Health Parity Inaugural Palliative Care Conference: April 5 Building Palliative Care in Upstate NY: Practice, Policy & Innovation

4 Overview Palliative Care: Why? What is it? Survey: What do we know? Palliative Care Innovations: Moving Upstream Trauma-Informed Palliative Care Mental Health Parity Inaugural Palliative Care Conference: April 5 Building Palliative Care in Upstate NY: Practice, Policy & Innovation

5 Experience of Serious Illness Diagnosis Too often followed by months to years of: Physical, psychological, other distress Progressive functional dependence, frailty Considerable family support needs High health care resource needs Context Fragmented care systems Poor communication between doctors, patients, and families Family caregiver and support system strain Total Pain Underassessed, Untreated, Inadequately treated total pain: Depression, anxiety Decreased socialization Sleep disturbance Impaired ambulation Increased HC utilization Source: Morrison, R.S. (2013), J of Palliative Medicine, 16, 726

6 Hospice Care Team-based, patient-oriented supportive services Terminally-ill (< 6 months) Team-based medical care, pain management, support of social, psychological, and spiritual well-being (families included) Palliative Care NOW a separate, established medical discipline Similar services to hospice BUT for anyone who is seriously ill IN PRACTICE Frail, elderly, multisystem disease, declining (Kaasa et al., 2007) > Half of consultations = end-stage disease (Morrison et al., 2008) Hospice precursor population

7 Are Palliative Care & Hospice the Same? All hospice is palliative care, but not all palliative care is hospice.

8 #1 #2 Sources: Kelly, A.S. & Morrison, R. S. (2015), NEJM, 373, 747; Morrison, R.S. (2013), J of Palliative Medicine, 16, 726

9 Palliative Care & End of Life Project: A Community Survey of Knowledge & Attitudes Insert Picture of town of Ithaca

10 Self-Assessed Knowledge Hospice Palliative Care No knowledge 2% Some knowledge 48% Quite a bit of knowledge 37% Very knowledgeable 13% No knowledge 7% Some knowledge 54% Quite a bit of knowledge 33% Very knowledgeable 6%

11 Understand Difference Between Hospice & PC Strongly Agree N=48 16% Agree N=151 50% Strongly Disagree N=8 3% Disagree N=48 16% Not Sure N=47 15%

12 Objective Knowledge: Palliative Care % False True? PC only for terminally ill or dying PC only available to people with 6 months or < to live PC not provided along with curative treatments PC can be provided regardless of age PC provided by an interdisciplinary team

13 Do you know whether your community hospital offers palliative care? Not sure N=66 24% No, I do not know N=89 32% Yes, I know N=120 44%

14 Do you know where in your community you can access information about palliative care? Not sure N=39 14% No, I do not know N=47 17% Yes, I know N=188 69%

15 Health Care Decision Making & Advance Care Planning Health Care Proxy % Yes 55.9% No 31.1% Not Sure/No Response 13% Other Advance Directive/ Living Will Yes 43% % No 43.7% Not Sure/No Response 13.3%

16 View our full report: Palliative and End of Life Care Project: Community Report Gerontology Institute

17 Overview Palliative Care: Why? What is it? Survey: What do we know? Palliative Care Innovations: Moving Upstream Trauma-Informed Palliative Care Mental Health Parity Inaugural Palliative Care Conference: April 5 Building Palliative Care in Upstate NY: Practice, Policy & Innovation

18 Primary Palliative Care The basic skills & competencies required of all health care professionals. Secondary Palliative Care Specialist clinicians & organizations that provide expert consultation and/or co-management

19 Specialist-Level Palliative Care Hospital Community-based Hospice

20 Specialist-Level Palliative Care Program Availability More often in large hospitals; not-for-profit hospitals Variations in regional penetration Sources: Center to Advance Palliative Care; T. Dennison (personal communication)

21 Community-Based Palliative Care Settings: Home; NH; ALF; Outpatient clinic (physician s office, dialysis unit, cancer center) Models: Advanced Illness Management (AIM) programs; Supportive care programs embedded in cancer centers; Post-acute transitional care programs

22 Community-Based PC Outcomes Seriously ill older adults discharged with home PC were 3.7x < likely to be readmitted than those discharged to home without PC, 5x < likely to be readmitted than those discharged to nursing facilities (Enguidanos, Vesper, & Lorenz, 2012). Patients enrolled in a PC home-care program had fewer hospital stays (0.4 vs. 1.3 admissions) and shorter stays (4.4 vs days) in their last 2 months of life than did patients receiving usual care (Riolfi et al., 2014). 65% of PC patients family members reported that their emotional or spiritual needs were met, as compared to 35% of usual care patients family members (Gelfman, Meier, & Morrison, 2008). For patients with newly diagnosed metastatic non-small-cell lung cancer who received early PC, median survival was longer than for those who received usual care (11.6 vs. 8.9 months; Temel, Greer, & Muzikansky (2010).

23 Community-Based PC Outcomes: Care Models & Payer Programs Sharp HospiceCare s Transitions Advanced Illness Management program (Hoefer, Johnson, & Bender, 2013) Aggressive PC concurrently with disease-directed treatment of advanced heart failure patients: 1. Significant decrease in hospitalization rate (32% to 17%) 2. Significant decrease in ED visit rate (57% to 31%) 3. Average total cost of care decreased during enrollment ($73,025 to Support home-based PC program (Hopp et al., 2014) Average per-month cost reduction of $3,400 for enrollees age 65+

24 Overview Palliative Care: Why? What is it? Survey: What do we know? Palliative Care Innovations: Moving Upstream Trauma-Informed Palliative Care Mental Health Parity Inaugural Palliative Care Conference: April 5 Building Palliative Care in Upstate NY: Practice, Policy & Innovation

25 Trauma-Informed Palliative Care and the Trauma-Informed Organization Realizes the prevalence & impact of trauma Understands how to assess and treat the signs & symptoms of trauma Integrates this information into its policies & practices To Prevent client re-traumatization To Promote client/staff empowerment in a culturally sensitive framework SAMHSA:

26 Psychological Trauma: DSM-5 American Psychiatric Association (2013) Events that threaten death, serious injury, or sexual violence e.g., rape, serious accident, life-threatening illness (DSM-5) what about psychological trauma? Self or other Directly experienced Personally witnessed Some indirect experiences qualify Relevant to hospice & palliative care

27 Trauma in Medical Patients From the Research PTSD Symptoms predict Perceived Pain Anxiety, Depression, Distrust, Anger Avoidance of trauma reminders - including medical settings and medical personnel Patient-staff collaboration & patient care Feldman (2013); Otis et al. (2003); Otis et al. (2010)

28 Psychological Trauma IS COMMON More than 60% of men, and 50% of women in lifetime (ages years) National More than half of these experience two or more Trauma doesn t go away because people get old National Comorbidity Survey (N = 5,877) national, representative epidemiological survey of U.S. Kessler et al. (1995) Archives of General Psychiatry

29 Psychological Trauma IS COMMON Age Range Any Trauma National years % years % 75+ years 75.51% Chaudieu et al, (2011) N = 1661 Journal of Clinical Psychiatry

30 Traumas accumulate with increasing age Relationship traumas are often endorsed as lifetime worst trauma Pietrzak et al. (2012)

31 Palliative Care Populations Old 80% over the age of 65 40% over the age of 85 Sick Hx of life-threatening illness Intensive medical intervention Maybe Dying Terminal illness National Hospice & Palliative Care Organization (2012)

32 McLeod (1994); Andrews et al. (2007, 2016) Sources of Trauma Being Old Accrual, Losses...Life Review Reactivation of old trauma memories Can reactivate prior PTSD ++ in the context of ill health Can result in new PTSD even if the initial trauma didn t

33 Sources of Trauma Being Sick INTENSIVE MEDICAL INTERVENTION CAN BE A TRAUMA

34 Cancer PTSD symptoms 20% of patients with early-stage cancer 80% of those with recurrent cancer National Cancer Institute also see Kaas et al. (1993)

35 Sources of Trauma Being Sick Increased PTSD symptoms with Myocardial infarction e.g., Gander et al. (2006); Sheldrake et al. (2007); Tedstone & Tarrier (2003) Subarachnoid hemorrhage e.g., Noble et al. (2011) Acute leukemia e.g., Rodin et al. (2013) HIV e.g., Kimerling et al. (1999) Any delerium Partridge et al. (2014)

36 Sources of Trauma Being Sick Critical Care Sedation; Restraint; Intubation; Light; Noise > 80% of mechanically-vented ICU patients experience delirium Delirium predicts PTSD, cognitive declines, six-month mortality Ely et al. (2004) Full PTSD in 18-34% of ALL patients after ICU care Granjas et al, (2008)

37 Trauma-Informed Palliative Care and the Trauma-Informed Organization Realizes the prevalence & impact of trauma Understands how to assess and treat the signs & symptoms of trauma Integrates this information into its policies & practices To Prevent client re-traumatization To Promote client/staff empowerment in a culturally sensitive framework SAMHSA:

38 IMPLICATION: Need for Mental Health Parity in Palliative Care CENTER FOR PALLIATIVE CARE CLINICAL FELLOWS PROGRAM Provide intensive evidence-based training to clinical social workers and psychologists, with the goal of expanding the delivery of mental health care to seriously ill geriatric clients in rural upstate New York MAY 5-7 and JUNE 23-25

39 Ithaca College Gerontology Institute Palliative Care Conference 2017 Building Palliative Care in Upstate New York: Practice, Policy, & Innovation Wednesday, April 5 8:30am - 3:00pm Emerson Suites, Phillips Hall, Ithaca College To Register: Palliative care means enhanced healthcare for people with serious illness, at any stage and any age. Palliative care is taking root here in rural upstate New York and it looks different than in urban areas. This conference explores how we do palliative care and where we are headed - in practice, policy, and innovation. Cost: $15 per person, pre-registration required by Tuesday, March 28th.

40 THANKS for thinking about these important topics with us

41 Palliative Care Inpatient Palliative Care TEAM: Medical team; Social Workers; Chaplains RESOURCES: Hospital-based RURAL Community Palliative Care TEAM: PCP/Specialists; Visiting Medical Team; Social Workers; Chaplains RESOURCES: Hospice; VNS (no Chpln); Care Managers (no SW, no Chpln) EMS/Community Paramedicine Broadband Communications Volunteers