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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The definition is evolving!
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.
Start by responding to emotion– dig out those NURSE statements!
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!
If yes: “what have you talked about together?”
If you have 15 minutes (or more)… dig into values, experiences, and preferences:
“What brings your life joy and meaning?”
“What is quality of life to you?”
“What do you think went well, what didn’t go well and why?”
“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?”
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).
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).
Determining capacity for ACP is the same as assessing capacity for any other critical medical decision (Sessums 2011). Dr. Sudore suggests considering:
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.
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.
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.
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.
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).
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.
After listening to this episode listeners will…
Dr. Sudore reports no relevant financial disclosures. The Curbsiders report no relevant financial disclosures.
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.
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.
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