#295 Advance Your Care Planning with Dr. Rebecca Sudore

September 20, 2021 | By Leah Witt

Surrogate decision-makers, POLSTs, code status and more!

Advance your care planning with tips from our esteemed guest, Dr. Rebecca Sudore, @prepareforcare (UCSF). She helps us up our ACP game by defining advance care planning, and giving clear examples of how it can be incorporated into a busy primary care practice. It’s her life’s mission is to improve advance care planning and medical decision-making for culturally and ethnically diverse older adults. She is the creator of an interactive ACP website called PREPARE For Your Care, (after this episode, we are sure you’ll be sending patients there for advance care planning!)

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Credits

• Written by: Leah Witt, MD
• Produced by: Leah Witt, MD & Molly Heublein, MD
• Reviewer: Lingsheng Li, MD
• Infographic and Cover Art: Leah Witt, MD
• Hosts:Matthew Watto MD, FACP; Paul Williams MD, FACP, Leah Witt, MD   
• Editor: Matthew Watto MD (written materials); Clair Morgan of nodderly.com
• Guest: Rebecca Sudore, MD

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The Curbsiders are partnering with VCU Health Continuing Education to offer FREE continuing education credits for physicians and other healthcare professionals. Visit curbsiders.vcuhealth.org and search for this episode to claim credit. See info sheet for further directions. Note: A free VCU Health CloudCME account is required in order to seek credit.

Show Segments

• Intro, disclaimer, guest bio
• Guest one-liner
• Picks of the Week
• Case from Kashlak Part 1: General ACP
• Defining Advance Care Planning
• Case from Kashlak Part 1: Dementia & ACP
• Surrogate decision makers
• POLST
• Outro

Advance Care Planning Pearls

1. Flawless advice from Dr. Sudore: “What if it’s easier than I think it’s going to be?” A way to intervene in catastrophizing thoughts!
2. You don’t have to do all advance care planning in one sitting– normalize and do it step by step, one visit at a time.
3. Start with values/goals/preferences, then align with treatment options/recommendations.
4. Advocate for your patients and help out your colleagues! It is important to document your advance care planning conversations with patients to make sure that this information is easily accessible in the medical record and to ensure that patients’ wishes are honored.
5. “PREPARE for your care” resources are free for clinicians and patients– check them out today!

Advance Care Planning Notes

What is Advance Care Planning (ACP)?

The definition is evolving!

• Traditionally: One time, check box form completion (randomized studies failed to show benefit here!)
• Consensus definition (Sudore et al 2017): “Advance Care Planning is a process that supports adults at any age or stage in health in understanding and sharing their personal values, life goals and preferences regarding future medical care.” 

ACP is a complicated and heterogenous process (not just a form!) (McMahan 2020)

ACP studies that did show benefit showed that ACP decreases burden/stress/cognitive suffering from caregivers who are making decisions on behalf of loved ones.

The nitty gritty of ACP

If your patient brings up a concern (and opens the door for ACP):

Start by responding to emotion– dig out those NURSE statements!

“The Conversation”

An incremental approach is JUST FINE! The whole conversation doesn’t need to happen in one visit.

Use PREPARE for your care for pre-visit homework for your patient (AND YOU! There are simple scripts for advance care planning that anyone (front desk staff, nurses, physicians, etc) can use (see PREPARE Tools for Providers and Organizations). People who have gone through PREPARE are more empowered to start a conversation about ACP (Freytag et al 2020)!

If you have 5 minutes or less… ask about a surrogate decision-maker and orient to the process of ACP!

1. Health care proxy/agent/surrogate/representative (all terms are roughly equivalent and vary by state): “Is there someone you trust to help make medical decisions for you if there ever came a time you could not speak for yourself?”

 If yes: “what have you talked about together?”

2. Ask if they have a previously completed advance directive. If so, do they remember what is in it? If not, orient them to advance care planning. 

If you have 15 minutes (or more)… dig into values, experiences, and preferences:

1. Ask about values. 

“What brings your life joy and meaning?” 

“What is quality of life to you?”

2. Ask about prior experiences with illness (personally or in family/friends)

“What do you think went well, what didn’t go well and why?”

3. Use the spectrum analogy:

 “It can sometimes be helpful to think in general about what kind of medical care would be important to you. For example, some people feel that living as long as possible is the most important thing to them, no matter what their quality of life may be or the pain they may go through. Other people feel that there may be some health situations they know they would not want to go through, such as not being able to wake up from a coma or needing to be on machines to live. Have you thought about this before? What type of person are you?”

Document that conversation!

Literally document the conversation you had with your patient (use direct quotes!). This ends up being so much more valuable than just listing the code status. Think about what is clinically meaningful documentation.

Unfortunately, in many cases much of this important info is buried in hard-to-find primary care notes, so ideally your EMR/health system would identify a central location to hold this information (Walker et al 2018).

ADVANCED ACP Quick Hits…

Is there an automatic order of surrogate decision-makers if nothing is documented?

Every single state has its own laws! It is important to know if there is a default order in your state (DeMartino et al 2017).

ACP & Cognitive Impairment

Determining capacity for ACP is the same as assessing capacity for any other critical medical decision (Sessums 2011). Dr. Sudore suggests considering:

1. Can they communicate a choice?
2. Can they demonstrate understanding of the situation/consequences?
3. Can they talk about the “why” and reasoning to support choices?
4. Are the decisions consistent over time?

Should we also be addressing financial advance planning?

Yessss!! All of this advance planning is interrelated and most people are thinking about it together. Medical-legal partnerships and elder law attorneys are useful for financial planning.

What about people who cannot identify a surrogate decision-maker (sometimes called “unbefriended”)?

Many people report that they don’t have someone they trust to play this role (Chiu et al 2015, Pope et al 2020). In these situations, Dr. Sudore makes an extra effort to have more extensive ACP conversations.

How to mediate your own judgment about what is “best” for the patient

Moral distress is real (Dzeng 2020), and this can lead to tension and urgency about communicating our worry about a patient’s health and our perceived judgment about the “right” course of action. 

Consider this: if you walk into a room with an agenda, it’s pretty much game over. Try to leave your agenda at the door, and approach the conversation as above. Who are you as a person? What brings you joy? What outcomes of this treatment would be unacceptable? Use the spectrum analogy. Allying yourself with the patient and family opens the door for time trials of treatments and evolving care discussions.

Discrimination, racism, and ACP for diverse populations

Health disparities are based in real discrimination and racism in our health system, which has resulted in frequent mistrust of the medical system. PREPARE was created particularly to address these issues, and allow for ACP within families, communities–outside of the clinical context. There are easy-to-read advance directives downloadable in many languages.

POLST vs advance directive

Physician’s Order for Life Sustaining Treatment (POLST) (called different things in different states) is an order that a clinician writes/signs and is just about life sustaining treatments like CPR. It was created originally for very frail older adults in nursing home settings. POLSTs are supposed to be completed at each care transition (hospital discharge, etc).

In contrast, an advance directive (AD) is something a patient can complete on their own (without any assistance from a physician).

Links

1. Get yourself some Recchiuti chocolate (thanks Rebecca for the rec!)
2. Rebecca’s picks of the week: zone and zen out to Snoopy on the Disney Channel, Essentialism by Greg McKeown
3. Leah’s pick of the week: Your Unapologetic Career podcast by Kemi Doll, MD
4. Paul’s pick of the week: The Green Knight
5. More media with Dr. Sudore! GeriPal podcast, NPR 
6. PREPARE for Your Care, PREPARE for Your Care (COVID19 resources)

Goal

Listeners will confidently discuss advance care planning with patients and feel equipped with strategies for empathetic discussions that account for individual health concerns to develop a plan to achieve goal-concordant care. 

Learning objectives

After listening to this episode listeners will…  

1. Learn how to approach advance care planning discussions in ambulatory settings where non-urgent decision-making is required
2. Adopt a strategy and framework for having ACP conversations
3. Learn resources for completing documentation
4. Discuss how an advance care planning discussion will differ when discussing a particular anticipatory event (eg COVID-19 pneumonia) or progressive illness (eg dementia)
5. Understand the difference between an advance directive (AD) and physician order for life sustaining treatment (POLST)

Disclosures

Dr. Sudore reports no relevant financial disclosures. The Curbsiders report no relevant financial disclosures. 

Citation

Witt LJ, Sudore RL, Williams PN, Watto MF. “#295 Advance Your Care Planning with Dr. Rebecca Sudore”. The Curbsiders Internal Medicine Podcast. http://thecurbsiders.com/episode-list Final publishing date September 20, 2021.