5/21/2020

1

J. Randall Curtis, MD, MPH, Harborview Medical Center, University of Washington

Pastor Corey L. Kennard, MACM, Amplify Christian Church; Manager, Patient Experience, Ascension St. John Hospital, Detroit, MI

Lauren Jodi Van Scoy, MD, Penn State Milton S. Hershey Medical Center

Increased Relevance of Advanced Care Planning in

the COVID-19 Era

May 21, 2020

This program is made possible by the John and Wauna Harman Foundation

Randall Curtis, MD, MPH, completed medical school at Johns Hopkins University then an internal medicine residency and pulmonary and critical care fellowship at the University of Washington. He is a pulmonary and critical care physician and palliative medicine physician at Harborview Medical Center at the University of Washington. He also holds the A. Bruce Montgomery – American Lung Association Endowed Chair in Pulmonary and Critical Care Medicine and he is the founding Director of the Cambia Palliative Care Center of Excellence at the University of Washington. He has an active research program with over 25 years of continuous funding from the National Institutes of Health and has also received funding from a number of foundations including the Cambia Health Foundation, Robert Wood Johnson Foundation, and the Greenwall Foundation. His research focuses on improving palliative care for patients with serious illness as well as for patients’ families.

Corey L. Kennard, MACM, is Pastor of Amplify Christian Church, manager of Patient Experience at Ascension St. John Hospital in Detroit and also serves as an activist in the field of healthcare. His holistic approach (body, mind, and spirit) serves as the foundation for his desire to see all human beings treated with dignity, honor, and respect. Corey has been involved inthe field of healthcare for over 20 years with over a decade of experience in the areas of palliative care and hospice. His workhas also included leading a spiritual care team at one of Detroit's largest hospitals, and formerly serving as a Faculty Lead for Duke University's Institute on Care at the End Of Life (ICEOL) national training program called, "APPEAL." He had also served as a National Advisory Board Member for the Hospice Foundation of America "Hello" Project, and as a Co-Director of a Community Faith "Advance Care Planning" Project for the University of Virginia. Corey earned a Masters Degree from Ashland Theological Seminary and carries out his passion for people as a daring and devoted agent of change.

LJ Van Scoy, MD, is a pulmonary and critical care physician at Penn State Milton S. Hershey Medical Center. She is an Associate Professor of Medicine, Humanities and Public Health Sciences. As a physician scientist, she directs a research program that centers around end-of-life issues and includes advance care planning, communication and end-of-life decision-making. She is also the co-director of the Qualitative and Mixed Methods Core at Penn State. She is the director of Project Talk, a research program that studies the impact of innovative conversational tools, including an end-of-life conversation game ("Hello") and a novel graphic ICU communication tool (Let's Talk). She recently partnered with HFA to lead a national community-engagement project to evaluate and disseminate the "Hello" game across 27 states and more than 1,200 people living in underserved communities. Dr. Van Scoy serves as a methodology consultant for a wide variety of mixed-method projects and topics. She has served as a qualitative and mixed-methods consultant on a variety of projects, including large, randomized controlled trials, pharmacological drug trials and education projects.

www.uwpalliativecarecenter.com

J. Randall Curtis, MD, MPHDirector, Cambia Palliative Care Center of Excellence

Harborview Medical Center, University of Washington

@JRandallCurtis1

1

2

3

5/21/2020

2

Disclosures and Funding

• Disclosures– No financial conflict of interest

• Funding

Outline

• Advance care planning and goals-of-

care discussions

• Modifications for COVID-19

• Palliative care during COVID-19

– Supporting family

– Role of palliative care specialists

Terminology: Advance Care Planning

and Goals-of-care Discussions

• Advance care planning: discussions about values, goals, and preferences for future care– Healthy individuals

• Goals-of-care discussions: discussions about current goals and how they should inform current & future care– Chronic illness (early)

– Imminently dying (late)

Advance Care

Planning

Goals-of-care

discussions

4

5

6

5/21/2020

3

Randomized Trial of Advance Care

Planning Among 309 Elderly

• Hospitalized patients age >80

randomized to ACP by trained facilitator

vs. usual care

• 81% received ACP; 56% completed AD

– Facilitator used “Respecting Patient Choices”

– ACP in collaboration with physician

– Families present for 72%

– Sessions took median 60 minutesDetering, Br Med J, 2010; 340:c1345

Outcome (%) ACP Control p value

Death in ICU 0 14 0.03

PTSD in family 0 14 0.03

Depression in family 0 30 0.002

Anxiety in family 0 19 0.02

Satisfied with death 80 68 0.02

Satisfied with care 93 65 0.001

Randomized Trial of Advance Care

Planning Among 309 Elderly

Detering, Br Med J, 2010; 340:c1345

• EHR provides potential to measure quality of palliative care across the healthcare system

• Assessing care of population served by UW Medicine– Intensity of care for patients with chronic life-limiting

illness and documentation of advance care planning

– Identified 23,096 patients with chronic illness who died 2010-2015 cared for by UW Medicine

7

8

9

5/21/2020

4

20.9%

26.9%

29.1%

31.6%

35.9%

36.8%

15%

20%

25%

30%

35%

40%

2010 2011 2012 2013 2014 2015

Pe

rce

nta

ge w

ith

Ad

van

ce D

ire

ctiv

es

Year of Death

observed

curvilinear model

linear model

Advance Directives and

POLST Forms at UW Medicine

p<0.001

p=0.003

Curtis et al, J Palliat Med, 2018; S2:S52

n=23,096 patients with chronic, life-limiting illness

Hospitalizations in the Last 30

Days of Life at UW Medicine

28.8% 26.1% 25.5% 23.9% 25.4% 23.5%20%

22%

24%

26%

28%

30%

2010 2011 2012 2013 2014 2015

Perc

enta

ge w

ith

In

pat

ien

t C

are

Year of Death

observed

linear modelp<0.001

Curtis et al, J Palliat Med, 2018; S2:S52

n=23,096 patients with chronic, life-limiting illness

ICU use in the Last 30 Days of

Life at UW Medicine

20.5%18.2% 18.1% 16.9% 17.5% 16.9%

16%

17%

18%

19%

20%

21%

2010 2011 2012 2013 2014 2015

Perc

enta

ge w

ith

IC

U C

are

Year of Death

observed

linear modelp<0.001

Curtis et al, J Palliat Med, 2018; S2:S52

n=23,096 patients with chronic, life-limiting illness

10

11

12

5/21/2020

5

Provision of Palliative Care

• Broad domains of palliative care

– Symptoms (physical and psychological),

communication, coordination, spiritual care

• Primary palliative care

– Care provided by all clinicians caring for

patients with serious illness

• Specialty palliative care

– Care provided by palliative care specialists

Outline

• Advance care planning and goals-of-

care discussions

• Modifications for COVID-19

• Palliative care during COVID-19

– Role of palliative care specialists

– Supporting family

What is different in our fundamental approach

now with COVID-19?

NOTHING!!

13

14

15

5/21/2020

6

Things Would Be Different if We Hit

Crisis Standards of Care

• Three levels of care– Conventional – usual care with adequate

resources

– Contingency – strive for usual care under stress

– Crisis – scarce resources limit care

• We are not in crisis standards– Able to avoid through public health measures

• If we were to hit crisis standards of care– Hospital triage teams make allocation decisions

– Use of CPR may be included in those decisions

• COVID-19 heightens the importance of ACP and

goals-of-care discussions

• Key role for palliative care to teach, coach, and

support

Curtis/Kross/Stapleton; JAMA 2020; Epub 3-27-20

Increased Importance of

Addressing CPR During COVID-19

• Non-beneficial or unwanted CPR has always had risks for patients and family

– Prolong patient suffering

– Increase family distress

• Now CPR has increased risks for clinicians

– Increased potential for exposure

– Increased clinician distress

– Increased use of limited PPE resources

• CPR will be even less effective in isolation

16

17

18

5/21/2020

7

• We need not discuss therapies that are not indicated

• CPR is an exception because of patient & family expectations

• Informed assent is an ethical option – Can help some patients or families who

can’t make a decision for DNR but will let doctors decide

Steps of Informed Assent When CPR is

Judged Not to be Indicated

Assent Statement: “In this

situation, we don’t use CPR”

Assess Understanding

and Allow for Objection

Describe CPR

NO – Proceed with

Informed AssentYES – Informed Assent

Not Appropriate

Explain CPR won’t

achieve patient’s goals

Consider unilateral DNR:

Rare cases of true medical

futility

Assess Patient Values: Identify the vitalists – life

is worth living regardless of quality

Curtis/Kross/Stapleton; JAMA 2020; Epub 3-27-20

Outline

• Advance care planning and goals-of-

care discussions

• Modifications for COVID-19

• Palliative care during COVID-19

– Role of palliative care specialists

– Supporting family

19

20

21

5/21/2020

8

100

200

300

IHME Projections: Washington State

for 4/21/20

https://covid19.healthdata.org/

Supporting Families Given

Visitation Restrictions

• Don’t under-estimate the stress

– Patients, families, clinicians

• Identify alternative communication

– Daily phone or video-conference

• Create opportunities to allow family to see patients

– Through the window into room

– 1-2 family members in PPE for dying patients

Using Palliative Care Consult Services

• Palliative care consults ready to help

– Prioritize high need patients and families

• COVID-19 patients

• ICU and ED settings

– Available for coaching and brief or full consults

– Developed plan for surge staffing

• Target key areas of need

– Difficult goals of care & code status discussions

– Moderate/severe symptoms

– Spiritual assessment/support

• Support families with restricted visitationhttp://www.uwpalliativecarecenter.com

22

23

24

5/21/2020

9

https://www.jpsmjournal.com/content/covid-19

COVID-19 Resources• Clinician communication: www.vitaltalk.org

http://www.uwpalliativecarecenter.com

• Patients and families; Friends and relativeswww.theconversationproject.org www.prepareforyourcare.org

• UW Medicine Palliative Care Response Plan

– https://www.jpsmjournal.com/content/covid-19

Pastor Corey L. Kennard

www.CoreyLKennard.com

Twitter: @iampastorcorey

Instagram: @iampastorcorey

Facebook.com/CoreyLKennard

LinkedIn: Corey L. Kennard

25

26

27

5/21/2020

10

• My Hospital – 200% increase in weekly death rate

• Wayne County – 11.5% death rate

• Black Community hit hard due to underlying health

conditions

• Historical Health Inequities: Systematic and unjust

distribution of social, economic, and environmental

conditions needed for health

Impact of COVID-19 in Detroit

• Volume of deaths

• Lack of PPE

• Shortage of staff due to

sickness and stress

• Family/household distance

and concerns

Causes of Staff Fatigue

The overarching goal of virtual visits is to augment in-person visits

and broaden access in the following ways:

• Increase patient engagement and satisfaction

• Improve clinician satisfaction and efficiency

• Provide immediate connection with clinicians and family members

• Enhance communication

• Resolve medication discrepancies

• Improve care quality and reduce hospital traffic

• Reinforce patient care with specialist consultations

• Reduce patient anxiety and feelings of loneliness

Virtual Visits

28

29

30

5/21/2020

11

• Lack of ACP Knowledge

• Mistrust of Healthcare System

• Spiritual Beliefs

• Fear of Discussions Regarding

Mortality

• Lack of Healthcare Interaction

and Access

• Secrecy of Medical Condition

(Health)

Barriers to Advance Care Planning in Communities of Color:

What Disparities Has

COVID-19

Uncovered?

31

32

33

5/21/2020

12

• 44% more likely to die from stroke

• 40% more likely to die from breast

cancer

• 25% more likely to die from heart

disease

• 20% more likely to have asthma

and 3x as likely to die from it

• 23% more likely to be obese

• 72% more likely to be diabetic

African-American Health Concerns prior to COVID-19 that have increased the mortality risk

Fatalities in the Black

Community due to

COVID-19 as of 4/13/20

34

35

36

5/21/2020

13

Role of Clergy in ACP

• Increase their awareness of the importance of Advance Care

Planning (ACP)

• Explore their personal feelings and faith perspectives when it

comes to ACP

• Embrace their consequential role of spiritually inspiring and

leading their congregants as they consider important decisions

impacting their health and well-being when they are not able to

speak for themselves

• Learn how ACP can ease the worries and concerns of family and

close friends of their congregants before a health crisis occurs

• Teach the Biblical Foundation of ACP, and include as a vital and

natural part of their overall ministry

Advance Care Planning in the COVID-19 Era

Lauren Jodi Van Scoy, MD

Associate Professor of Medicine, Humanities and Public Health Sciences

Division of Pulmonary and Critical CareLauren Jodi (“LJ”) Van Scoy, MD

lvanscoy@pennstatehealth.psu.edu

Twitter: @KnowYourWishes

A Happy Contrast

• 2-week lead time

• Drills

• Command center

• Years of training as an Ebola Treatment Center

• PPE available

• Drive by testing

• Current inpatient testing available within 2 hours

37

38

39

5/21/2020

14

As of 5/18/20

• Patients actively inpatient at MSHMC: 17 inpatient, 1 on ventilator

• Dauphin County: 912

• State of PA: 60,622

• State of PA Deaths: 4,342

• Deaths in US: 1,401,948

• State of NY: 345,813

• TOTAL: Discharged 83 patients, 2 deaths

Disparities in Hospitalization Rates

% Population

% Hospitalizations

This COVID-19–associated hospitalizations among persons of all ages in 99 counties in 14 states (California, Colorado, Connecticut, Georgia, Iowa, Maryland, Michigan, Minnesota, New Mexico, New York, Ohio, Oregon, Tennessee, and Utah).The catchment area represents approximately 10% of the U.S. population

Shikha Garg, MD, et al. Hospitalization Rates and Characteristics of Patients Hospitalized with Laboratory-Confirmed Coronavirus Disease 2019 — COVID-NET, 14 States, March 1–30, 2020, Morbidity and Mortality Weekly Report.

59%45%

White Americans

18%33%

African Americans

14%8%

Latinx Americans

Health Disparities

exist in end-of-life

care

African Americans and Hispanic/Latinx patients are 3 times

more likely than White Americans to die after a lengthy ICU

stay and receive unwanted treatments.

3Xmore

Degenholtz, H. B., et al. (2002). "Persistence of racial disparities in

advance care plan documents among nursing home residents."

Journal of the American Geriatrics Society 50(2): 378-381.

Johnson, K. S., et al. (2008). "What explains racial

differences in the use of advance directives and attitudes

toward hospice care?" J Am Geriatr Soc 56(10): 1953-1958.

Loggers, E. T., et al. (2009). "Racial differences in

predictors of intensive end-of-life care in patients with

advanced cancer." J Clin Oncol 27(33): 5559-5564.

40

41

42

5/21/2020

15

<25% African American

and Hispanic/Latinx

populations engaging in ACP

Degenholtz, H. B., et al. (2002).

"Persistence of racial disparities in advance

care plan documents among nursing home

residents." Journal of the American

Geriatrics Society 50(2): 378-381.

Johnson, K. S., et al. (2008). "What

explains racial differences in the use of

advance directives and attitudes toward

hospice care?" J Am Geriatr Soc

56(10): 1953-1958.

Loggers, E. T., et al. (2009). "Racial

differences in predictors of intensive

end-of-life care in patients with

advanced cancer." J Clin Oncol

27(33): 5559-5564.

Yet…

60% US population

have engaged in ACP

Van Scoy, L. J., Green, M.J., Levi, B.H (2016) Advance Care Planning. Scientific American Medicine

One-on-one

interventions

with nurses,

social workers

POLST

programs

Education

programs

What’s

been done?

Videos,

online

programs

EMT flags

prompting

PCPs to

discuss ACP

Small to moderate effect

sizes, labor and

resource intense, and,

don’t address barriers…

ACP Tools

Created by Rebecca Sudore, MD www.prepareforyourcare.orgCreated by Michael Green, MD, Benjamin Levi, MD, PhD and Vital Decisions, LLC

www.mylivingvoice.com

43

44

45

5/21/2020

16

Underserved communities have unique barriers to ACP

• Access to resources • Financial

• Health centers

• Computers

• PCPs

• Geography (rurality)

• Distrust of the healthcare system/research

Created by Common Practice, LLC;

https://commonpractice.com/products/hello-game

Overcoming Barriers• Games have been used to address

emotionally laden topics (cancer, obesity, PTSD, anxiety)

• Games have successfully altered health-related behaviors (exercise, healthy eating, medication adherence)

• Games create a safe environment for role playing, trial and error, non-threatening forum

• Health games are easy to implement in community settings

• Psychological safety is fostered

Heavy questions Lighter questions

46

47

48

5/21/2020

17

Community-Based Delivery Model

PROJECT TEAMHFA, Project Talk

HOST HOSTHOST

COMMUNITYCENTER

COMMUNITYCENTER

COMMUNITYCENTER

National Scope

65 applications

53 host sites

27 states

= onsite research

team, n=15

49

50

51

5/21/2020

18

Site Venue Type RegionUrban/

Rural

No. of

Attendees

No.

Consented

Consent

Rate

On Site Data Collection (n = 15 completed events)

1 Broussard, LA Place of worship South Rural 43 43 100%2 Sodus, NY Place of worship Northeast Rural 22 22 100%3 Livingston, AL University location South Rural 52 50 96%4 Atlanta, GA Health center South Urban 35 35 100%5 Philadelphia, PA Place of worship Northeast Urban 17 16 94%6 Amarillo, TX Community center Midwest Urban 20 20 100%7 Washington, DC Place of worship South Urban 48 45 94%8 Las Vegas, NV Senior center West Urban 39 36 92%9 Lakeland, FL Health center South Urban 24 23 96%10 Milwaukee, WI Place of worship Midwest Urban 31 18 58%11 Asheville, NC Place of worship South Rural 24 24 100%12 Chicago, IL Place of worship Midwest Urban 32 13 41%13 Battle Creek, MI Place of worship Midwest Urban 6 6 100%14 Palo Alto, CA Place of worship West Urban 18 18 100%15 St. Louis, MO Senior center Midwest Urban 17 17 100%

TOTALS 428 386 90%

On Site Recruitment

Total project

participants

= 1,122

n = 43

consent rate

100%

Rural South

Hello, Broussard, Louisiana

Hello, Las Vegas, Nevada

n = 39consent rate

92%

Urban West

Re-read or reviewed

an existing AD

Had a conversation with loved

ones about EOL issues

Discussed the game

or game questions

with others

48%

80%

70%

Completed a AD

Reviewed

resources provided

at Game Day

Completed 1+ behaviors

Completed 3+

behaviors

56%

98%

67%

41%

Since

game day,

you have?

Since Game Day, have you…ACP behaviors at ~ 9 months

52

53

54

5/21/2020

19

Concluding Remarks

• Attention must be paid to health disparities

• End-of-life tools are needed that are tailored for individual needs

• Start the conversation

• Spread Knowledge, Not COVID

Survey with free text responses to assess:

• Knowledge

• Understanding of public health recommendations and intent to follow

• Perceptions and Concern re: COVID-19

• Information Sources

• Attitudes about re-opening

Knowledge and Perception in the COVID-era

>8000 participants

5,948 fully complete

surveys

Spread Knowledge, not COVID

covidsurvey.psu.edu

Available in 24 languages

For more information:

lvanscoy@pennstatehealth.psu.edu or rlennon@pennstatehealth.psu.edu

55

56

57

5/21/2020

20

Underserved Voices Need to be Heard and Represented!

>8000 participants

5,948 fully complete

surveysCurrent Data: 9,210 participants

African Americans: 188 (2.3%)

Latinx: 247 (3.15%)

73 countries with 3 countries >100 respondents

J. Randall Curtis, MD, MPH

Harborview Medical Center, University of Washington

Pastor Corey L. Kennard, MACM

Amplify Christian Church; Manager, Patient

Experience, Ascension St. John Hospital, Detroit, MI

Lauren Jodi Van Scoy, MD

Penn State Milton S. Hershey Medical Center

June 16: The Evolving Role of the Trained Death Doula in End of Life Care

Alua Arthur

Upcoming HFA Webinars

For more information, visit: hospicefoundation.org/Education/Upcoming-Programs

May 27: Therapeutic Response to Trauma and Loss in the COVID-19 Pandemic

Jenna Z. Marcus, MD

Therese A. Rando, PhD, BCETS, BCBT

58

59

60

5/21/2020

21

Online Bereavement Support Resource Journeys

Newsletter is now available electronically

The June issue of Journeys is available as a PDF for unlimited use for $250 per issue. This online version makes it easy for you to forward these issues to your email distribution lists.

HFA's Complimentary COVID-19 Series

Programs Available On Demand

https://hospicefoundation.org/Education/Free-COVID-19-Programs

HFA’s 2020 Living with Grief® Program

Intimacy and Sexuality During Illness and LossLive broadcast: September 24, 2020, 1:00pm to 3:00pm ET

Expert Panelists: Carrie Arnold, PhD, FT, M.Ed., RSW, CCC; Alua Arthur, JD;

John G. Cagle, PhD, MSW; Kenneth J. Doka, PhD, MDiv

61

62

63

5/21/2020

22

This program is made possible by the John and Wauna Harman Foundation

1. Go to educate.hospicefoundation.org

If this is your first HFA certificate, click

“Create a new account”

2. Enter the CE Code: _____

3. Complete the exam

You must pass at 80% or above and may

retake the exam as many times as needed

4. Choose your board category and board

5. Complete the program evaluation

6. Print your certificate

CE Code expires May 20, 2021

Questions? Email HFA at onlineceu@hospicefoundation.org

.

64

65

66