MiCMRC Educational Webinar

Applying a Patient-Centered Design to Improve Educational Materials on

Advance Care Planning

July 11, 2017

MiCMRC Care Management Educational Webinar:Applying a Patient-Centered Design to Improve Educational Materials on Advance Care Planning

Expert Presenters:

Kathryn ShindeldeckerSenior AdvisorQuality DepartmentMichigan Medicine – University of Michigan

Kristen HurstSenior Project ManagerPopulation Health OfficeMichigan Medicine – University of Michigan

Disclosures• The planners have reported no relevant conflict of interest for the

purpose of the MiCMRC Educational webinar “Applying a Patient Centered Design to Improve Educational Materials on Advance Care Planning ”.

• There is no commercial support for this activity.• This webinar is available for CE credit until July, 2019 .• Participants who successfully view the entire live or recorded

webinar and complete the online CE process including required evaluation with email address will earn 1.0 contact hours.

• This continuing nursing education activity was approved by the Ohio Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation. (OBN-001-91)

Instructions for Obtaining Nursing and Social Work CE CreditTo receive Nursing or Social Work 1.0 continuing education contact hour for “Applying a Patient Centered Design to Improve Educational Materials on Advance Care Planning” for Today’s Live Webinar 7/11/2017 2:00 – 3:00 PM

• Attend the entire webinar

• Go to the Michigan Care Management Resource Center web site http://micmrc.org/webinars

• On the micmrc web site webinar page, locate the “Applying a Patient Centered Design to Improve Educational Materials on Advance Care Planning” webinar information – Click the link titled To Request CE Credit Click Here– Complete the brief form, include your e-mail address, click submit

• This will generate an email message to you containing a link to complete the CE request and required evaluation form

• Follow instructions in the e-mail: Complete the evaluation and submit. This step generates an email to you containing the CE certificate

*Note: This webinar will be recorded. CE for viewing the recorded webinar will be available on http://micmrc.org/webinars soon. The recorded webinar will be available for Nursing and Social Work CE credit until July, 2019.

For technical assistance please e-mail: micmrc-requests@med.umich.edu

Click link shown to start CE process

Click on evaluation link to complete CE process

Applying a Patient-Centered Design to Improve Educational Materials on

Advance Care PlanningKathryn Shindeldecker

Senior AdvisorQuality Department

Kristen HurstSenior Project ManagerPopulation Health Office

Objectives:

1. Review the process for obtaining input into new advance directive patient education materials

2. Describe plain language guidelines and highlight the importance of following them

3. Outline the process for receiving patient feedback on potential patient education materials

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Outline

• Brief overview of Advance Care Planning (ACP)

• Highlights of ACP efforts at Michigan Medicine

• Plain Language guidelines

• Adhering Plain Language guidelines to ACP patient materials

• Testing ACP patient materials

• Next Steps

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Definitions

• Advance Care Planning

Advance Care Planning (ACP) is an umbrella term used to describe the process of examining one’s values, engaging in conversation with one’s doctor and loved ones, and stating and documenting one’s wishes for care in the future.

• Advance Directive

Advance Directives are documents that name a surrogate decision maker (Durable Power of Attorney for Healthcare) and/or state preferences for future health care (DNR/Living Will).

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Overview

• Advance Care Planning process involves: – Learning about the types of decisions that

might need to be made

– Considering those decisions ahead of time

– Telling others about your preferences

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Overview

• An Advance Directive…– Is a Legal document

– Goes into effect only if you are incapacitated and unable to speak for yourself, no matter how old you are

– Helps others to know type of medical care you want and your values related to end-of-life care

– Can be adjusted

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Advance Care Planning

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Effective advance care planning is a conversation, not a question.

Why does it matter?

“It’s always too early, until it’s too late” – The Conversation Project, 2013

• Advance Care Planning can: – Support several of the primary concerns of people with

life-limiting illnesses: involvement, clear communication, shared decision making and a sense of control.

– By stating the kind of care they want in advance, patients may alleviate the burden of decision making on family members.

– Avoid many physical and psychological stresses.

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Why does it matter?

• Rate of Advanced Directives on record at Michigan Medicine– Review of patients who are 65 years of age and older in General Medicine

and Family Medicine Clinics (18 Clinics; over 26,000 patients)

– April 2017: An average of 30% of patients had completed AD

– April 2016: An average of 25.3% of patients had completed AD

– Growth of 18.5% YoY

– Continues to be an opportunity for improvement

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ACP Readiness Assessment (2012)

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0

1

2

3

4

5

6

7

Yes always Yessometimes

No never do not know

Q10: As part of routine care, are patients without an advance directive counseled about the

importance of completing advance directives?

Primary care Specialty care

4

9

6

Does your clinic have an operational procedure in place that ensures that patients are asked if they

have completed advance directives?

Yes

No

Do not know

2

113

4

As part of routine care, are patients seen in your clinic asked about whether they have completed an

advance directive?

Yes, always

Yes, sometimes

No, Never

Do not know

Advance Care Planning efforts at Michigan Medicine

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ACP Steering Committee:• Multidisciplinary panel of internal experts and leaders • Responsible for developing and implementing an ACP

strategic plan for the institution• ACP is embraced and embedded into clinical practice• ACP documentation flows seamlessly throughout the

institution and community

In early 2016, ACP Steering Committee identified two priority areas:1.Patient/Caregiver Education and Engagement2.Provider/Patient Communication and Documentation

Patient/Caregiver Education and Engagement

• Multidisciplinary Working Group formed with open-ended charge– Working Group included several practicing Social Workers

• Used Lean A3 thinking

• Identified priority as the current booklet distributed for advance care planning

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Current Advance Directive booklet• Published in 2011

– State of Michigan

• Includes: – 42 FAQs

– DPOA-HC

– Brief Living Will

– Post-Death planning

– Mental Health DPOA-HC

– DNR Declaration

– DNR Declaration for religious exemptions

• Does not meet Plain Language standards

• No patient input

• Not user friendly - pages not perforated, often returned ripped

• Cost to print: $1/booklet

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What we were looking for

• We wanted advance directive materials that were user friendly

• Easy to print anywhere

• Readily available to stock across and clinics and areas of the hospital

• Accurately applied all aspects of Michigan law for advance care planning and naming a Durable Power of Attorney for Healthcare (DPOA-HC)

• Information and instructions written in plain language

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What is Plain Language?

• Plain language is a concept developed within the federal government in the mid-1990s– “The Plain Language Action and Information Network (PLAIN) is a

community of federal employees dedicated to the idea that citizens deserve clear communications…”

• Plain Writing Act of 2010– Requires federal agencies to use “clear government communication that

the public can understand and use”

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Why Plain Language?

• Plain language is a strategy for communicating with patients that has been proven to improve health literacy – Health literacy – “the degree to which individuals have the capacity to

obtain, process, and understand basic health information and services needed to make appropriate health decisions

• It is estimated that 35-36% of Americans have low health literacy, while only 12% have proficient health literacy

• Studies have shown that low health literacy is linked to poor health outcomes

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Sourcing Existing Materials

• Adopted from current materials used at Henry Ford Health System and HAP – Creative Common License

• What did we like:– Written in Plain Language

• Clear, step-by-step instructions

• Useful headings

• Use of active voice

• Short sentences

• Avoidance of legal or technical jargon

– Simple graphics

– DPOA-HC written like an instruction manual

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Proposed Booklet – Features

• Adheres to Federal Plain Language Standards

• Black/White formatting for easy printing from any location

• Simple definitions

• Durable Power of Attorney for Health Care form – No DNR Declaration

• Section for statement of health care preferences

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Patient Input – PEMAT Survey

• Patient Education Materials Assessment Tool– Agency for Healthcare Research and Quality (AHRQ) tool

– Tested and reliable tool

• Assesses understandability and actionability– Understandability: Patient education materials are understandable when

consumers of diverse backgrounds and varying levels of health literacy can process and explain key messages

– Actionability: Patient education materials are actionable when consumers of diverse backgrounds and varying levels of health literacy can identify what they need to do based on the information presented1

• e-surveyed 29 PFCC patient advisors via Qualtrics

281 Source: AHRQ: The Patient Education Materials Assessment Tool (PEMAT) and User’s Guide –https://www.ahrq.gov/professionals/prevention-chronic-care/improve/self-mgmt/pemat/pemat1.html

PEMAT Survey

• Does the material include information or content that distracts from its purpose?

• Is the material divided into sections that are of comfortable length?

• Does the material present information in a logical sequence?

• Does the material have a summary?

• Does the material clearly identify at least one action the patient can take?

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PEMAT Survey Content-specific questions

• True/False: A Patient Advocate can make decisions for you if they decide you are not well enough to make your own decisions.

• True/False: The treatment choices I have written down on my Advance Directive cannot be changed once I have given the form to my doctor.

• Can you make health care choices that are not included on this form?– Yes, I can write them on a piece of paper and attach them to this form.

– No, if I use this form, I am limited to what is included on it.

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PEMAT Survey• Can your Patient Advocate decide to stop treatments and let you

die?– Yes, my Patient Advocate can make any decision they want.

– No, my Patient Advocate cannot decide to let me die.

– My Patient Advocate can only decide to let me die if I have explicitly stated that in my Advance Directive.

• Who can serve as a witness to sign this form?– My Patient Advocate

– My healthcare provider

– One of my relatives

– A staff member in my nursing home

– C and D

– None of the above 31

PEMAT Survey Results

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Additional Feedback

• Sources – Patient and Family Advisory Councils

– Pilots in Clinics (Family Medicine and General Medicine)

– Experts in the field

• Application – Feedback helped to inform changes to the booklet

– Comprehension questions helped to highlight areas that caused confusion

– Feedback received through surveys and facilitated group discussions

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Next Steps

• Finalize edits and approval

• Strategic roll out, incorporating the Advance Directive Library in the Patient Education Clearinghouse– Dedicated home for Michigan Medicine ACP Materials

– Include a separate DNR Declaration form and Durable Power of Attorney for Mental Health Care Choice form readily available to print from any location

– Incorporate other ACP patient education materials from internal and external experts

• Cultivate Resources and Best Practices

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References• Advance Care Planning: Tips from the National Institute on Aging: https://www.nia.nih.gov/health/publication/advance-care-planning

• Steinhauser, K. E., E. C. Clipp, M. McNeilly, N. A. Christakis, L. McIntyre, and J. A. Tulsky. 2000b. In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine 132(10):825-832.

• Edwards, A., N. Pang, V. Shiu, and C. Chan. 2010. Review: The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: A meta-study of qualitative research. Palliative Medicine 24(8):753-770.

• Martin, D.K., E. C. Thiel, and P. A. Singer. 1999. A new model of advance care planning: Observations from people with HIV. Archives of Internal Medicine 159:86-92.

• Billings, J. A. 2012. The need for safeguards in advance care planning. Journal of General Internal Medicine 27(5):595-600.

• Detering, K. M., A. D. Hancock, M. C. Reade, and W. Silvester. 2010. The impact of advance care planning on end of life care in elderypatients: Randomised controlled trial. British Medical Journal 340:c1345.

• Mack, J. W., J. C. Weeks, A. A. Wright, S. D. Block, and H. G. Prigerson. 2010b. End-of-life discussions, goal attainment, and distress at the end of life: Predictors and outcomes of receipt of care consisttnt with preferences. Journal of Clinical Oncology 28(7):1203-1208.

• Wright, A. A., B. Zhang, A. Ray, J. W. Mack, E. Trice, T. Balboni, S.L. Mitchell, V. A. Jackson, S. D. Block, P. K. Maciejewski, and H. G. Prigerson. 2008. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Journal of the American Medical Association 300(14):1665-1673.

• Federal Plain Language Guidelines: http://www.plainlanguage.gov/howto/guidelines/bigdoc/fullbigdoc.pdf

• The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy. National Center for Education Statistics; 2006. http://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2006483. Accessed December 8, 2016.

• Berkman ND, Sheridan SL, Donahue KE, et al. Health literacy interventions and outcomes: an updated systematic review. Evid Rep TechnolAssess (Full Rep). 2011;(199):1-941. doi:10.1059/0003-4819-155-2-201107190-00005.

• Shoemaker, SJ, Wolf, MS, Brach, C. Development of the Patient Education Materials Assessment Tool (PEMAT): A new measure of understandability and actionability for print and audiovisual patient information. Patient Education and Counseling 96. 2014: 395-403.

• Weiss BD. Health literacy and patient safety: Help patients understand (manual for clinicians, second edition). Am Med Assoc Found Am Med Assoc. 2007:62 p.

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Thank you!

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Instructions for Obtaining Nursing and Social Work CE CreditTo receive Nursing or Social Work 1.0 continuing education contact hour for “Applying a Patient Centered Design to Improve Educational Materials on Advance Care Planning” for Today’s Live Webinar 7/11/2017 2:00 – 3:00 PM

• Attend the entire webinar

• Go to the Michigan Care Management Resource Center web site http://micmrc.org/webinars

• On the micmrc web site webinar page, locate the “Applying a Patient Centered Design to Improve Educational Materials on Advance Care Planning” webinar information – Click the link titled To Request CE Credit Click Here– Complete the brief form, include your e-mail address, click submit

• This will generate an email message to you containing a link to complete the CE request and required evaluation form

• Follow instructions in the e-mail: Complete the evaluation and submit. This step generates an email to you containing the CE certificate

*Note: This webinar will be recorded. CE for viewing the recorded webinar will be available on http://micmrc.org/webinars soon. The recorded webinar will be available for Nursing and Social Work CE credit until July, 2019.

For technical assistance please e-mail: micmrc-requests@med.umich.edu