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

Barbara Ganzel, Ph.D., LMSW, Gerontology Institute DirectorElizabeth Bergman, Ph.D., Associate Professor

Center for Palliative Care co-Directors

Mission

Promote and advance palliative care in rural communities through research, education, and community development

The Center for Palliative Care at the Ithaca College Gerontology Institute

OverviewPalliative 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

OverviewPalliative 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

Source: Morrison, R.S. (2013), J of Palliative Medicine, 16, 726

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

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

Are Palliative Care & Hospice the Same?

All hospice is palliative care,

but not all palliative care is hospice.

#1 #2

Sources: Kelly, A.S. & Morrison, R. S. (2015), NEJM, 373, 747; Morrison, R.S. (2013), J of

Palliative Medicine, 16, 726

Palliative Care & End of Life Project: A Community Survey of Knowledge & Attitudes

Insert Picture of town of Ithaca

Self-Assessed KnowledgeHospice 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%

Understand Difference Between Hospice & PC

Strongly DisagreeN=83%

DisagreeN=4816%

Not SureN=47 15%

AgreeN=151 50%

Strongly AgreeN=4816%

Objective Knowledge: Palliative Care

%

False True ?

PC only for terminally ill or dying 67.9 7.3 24.8

PC only available to people with 6

months or < to live70.2 3.0 26.8

PC not provided along with curative

treatments60.6 7.3 32.1

PC can be provided regardless of age 2.3 78.1 19.5

PC provided by an interdisciplinary

team1.0 71.2 27.9

Do you know whether your community hospital offers palliative care?

Yes, I knowN=12044%

No, I do not knowN=8932%

Not sureN=6624%

Do you know where in your community you can access information about palliative care?

Yes, I knowN=18869%

No, I do not knowN=4717%

Not sureN=3914%

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%

View our full report:

Palliative and End of Life Care Project: Community Report

http://www.ithaca.edu/gerontology/docs/PCEndLifeProjReport.pdf

Gerontology Institute

OverviewPalliative 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

• The basic skills & competencies required of all health care professionals.

Primary Palliative

Care

• Specialist clinicians & organizations that provide expert consultation and/or co-management

Secondary Palliative

Care

Specialist-Level Palliative Care

Hospital

Community-based

Hospice

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)

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

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. 19.6 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 forthose who received usual care (11.6 vs. 8.9 months; Temel, Greer, & Muzikansky (2010).

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 $46,588)

@HOMe Support home-based PC program (Hopp et al., 2014) – Average per-month cost reduction of

$3,400 for enrollees age 65+

OverviewPalliative 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

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: http://www.samhsa.gov/nctic/trauma-interventions

Psychological Trauma: DSM-5American Psychiatric Association (2013)

Events that threaten death,

serious injury, or sexual

violence e.g., rape, serious accident,

life-threatening illness (DSM-5)

• Self or other

• Directly experienced

• Personally witnessed

• Some indirect experiences qualify

Relevant to hospice & palliative care

what about

psychological

trauma?

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 careFeldman (2013); Otis et al. (2003); Otis et al. (2010)

Trauma in Medical Patients

National

Psychological TraumaIS COMMON

More than 60% of men, and 50% of women in lifetime (ages 15 -54 years)

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

National

Psychological TraumaIS COMMON

Age Range Any Trauma

65-69 years 59.72 %

70-74 years 64.77 %

75+ years 75.51%

Chaudieu et al, (2011) N = 1661 Journal of Clinical Psychiatry

Traumas

accumulate with

increasing age

Pietrzak et al. (2012)

Relationship traumas are

often endorsed as lifetime

worst trauma

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)

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

McLeod (1994); Andrews et al. (2007, 2016)

INTENSIVE MEDICAL

INTERVENTION

CAN BE A TRAUMA

Sources of Trauma

Being Sick

Cancer

PTSD symptoms• 20% of patients with early-stage

cancer

• 80% of those with recurrent

cancer

National Cancer Institute

http://www.cancer.gov/cancertopics/pdq/supportivecare/post-traumatic-

stress/HealthProfessional/page1/AllPages/Print also see Kaas et al. (1993)

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)

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

Sources of Trauma

Being Sick

Granjas et al, (2008)

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: http://www.samhsa.gov/nctic/trauma-interventions

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

Ithaca College Gerontology Institute Palliative Care Conference 2017Building Palliative Care in Upstate New York: Practice, Policy, & Innovation

Wednesday, April 58:30am - 3:00pmEmerson Suites, Phillips Hall, Ithaca CollegeTo Register: http://www.ithaca.edu/gerontology/wrkshpsconfspkrstoppage/palliativecareconf2017/

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.

THANKSfor thinking about these

important topics with us

Palliative Care

Inpatient Palliative Care TEAM: Medical team; Social Workers; Chaplains

RESOURCES: Hospital-based

RURAL Community Palliative CareTEAM: 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