Surrogate-Decision Makers (SDMs) are the Secret Key to Successful Advance Care Planning (ACP)

97% of Surrogate Decision Makers report Koda ACP will spur a conversation with their loved one.

By Fady Shanow, MPH, R. Lynae Roberts, PhD, Desh Mohan, MD, Christina Lukasko

Background on ACP

Advance care planning (ACP) is a comprehensive process that involves discussions and decisions about care preferences when facing potential future serious illness, including documenting these decisions to help guide healthcare providers and family members in fulfilling those wishes. Many medical organizations, including the American Medical Association (AMA) and the American Society for Clinical Oncology (ASCO), have emphasized the importance of ACP in promoting autonomy, improving patient outcomes, and reducing caregiver burden. 

A crucial stakeholder in the ACP process is the surrogate decision-maker (SDM). They bear the responsibility of acting on behalf of the patient in situations where the patient is unable to advocate for themselves. According to the 2018 Delphi Consensus on ACP, 3 of the top 5 outcomes defining successful ACP involve improving patient-SDM alignment. When considering that ACP effectiveness relies on the alignment of patients and their SDMs to ensure that they enforce and honor patients’ decisions, a disengaged SDM can be devastating. Despite their importance, traditional approaches to ACP and advance directive (AD) completion often leave SDMs out of the process altogether. Even innovative digital advance directive (AD) solutions fail to include SDMs in the process. This lack of attention can lead to suboptimal ACP outcomes, as these resources don’t involve SDMs in discussing and understanding the care preferences of their loved ones. As a result, SDMs might face decision-making challenges when it comes to providing goal-concordant care for patients.

The Impact of Properly Engaging SDMs: Koda’s Data

To better understand the impact of Koda’s ACP process on SDMs, national surveys were conducted on SDMs to assess their understanding, engagement, and motivations when participating in Koda’s ACP process. 

The surveys first assessed the initial thoughts of an SDM, when informed that their loved one has selected them as an SDM (Fig 1). Data shows that approximately 50% of SDMs initially felt worried, stressed or confused, with many feeling blindsided and associating this correspondence with the illness of the patient (Fig 1).

However, once engaged through a thorough explanation that frames ACP and their role in it,  80% of SDMs were likely or very likely to download and review their loved one’s plan (Fig 2). 

After reviewing these plans, 97% of these SDMs said they would discuss the plan with their loved ones. 60% said they would store the plans (Fig 3). 

When asked whether this plan would support the SDM in decision making on behalf of the patient, 93% stated it would (Fig 4). These three actions underscore the core actions at the heart of effective ACP: 

  1. Alignment of the SDM and patient through conversation, 
  2. The storage and safe-keeping of these records, and 
  3. The execution of the patient’s wishes. 

When properly engaged, MDMs are willing to undertake all of these actions.

How Surrogates are Essential to ACP Facilitation

Ultimately, goal-concordant care is achieved when the medical care provided aligns with the patient’s values, preferences, and goals. SDMs are vital in ensuring that the patient’s wishes are understood and respected, even when the patient is unable to communicate these preferences directly. This can be an emotionally challenging and burdensome task, especially if the SDM is uncertain about the patient’s preferences. By engaging SDMs in the ACP process and discussing the patient’s values and goals, this burden can be reduced, leading to more confident and informed decision-making.

Further, for patients with cognitive impairments, such as dementia, SDMs are often required to aid in decision-making much earlier in the patient’s life. These patients may have difficulty understanding complex medical information or expressing their preferences. SDMs can provide valuable insights into the patient’s values and goals, ensuring that the care provided is in line with the patient’s wishes.

This data demonstrates that Koda’s approach to SDM alignment in the ACP process is one that effectively engages SDMs. A critical nuance that was uncovered was that many SDMs are initially unprepared and worried to engage in this process. This data is similar to what has been studied prior, with 54% of ACP conversations being reported as stressful by 54% of SDMs. Despite the initial apprehension, by gentle priming of the SDM, Koda is able to help them engage in the process. A significant majority reported that they would review and store plans, and more importantly, discuss care preferences with their loved ones. There is growing consensus that increased understanding of patient preferences by the SDM through conversations are an important outcome of ACP that is likely to drive better goal concordant care. Studies have further shown that communicating about quality of life preferences between the patient and SDM drove increased understanding of patient preferences, while simply completing legal documents, including living wills or assignment of healthcare proxy, did not increase patient-SDM alignment. Lastly, the data demonstrates that this process and the plans received would help SDMs with decision making if their loved one faced serious illness. 

Koda’s Prioritization of SDM Research

SDMs are unfortunately often overlooked in most ACP approaches. Given their critical importance in ACP success, it’s vital to better understand both their motivations and apprehensions to drive better goal-concordant care for the patient. Koda Health has received funding from the National Institutes of Health and National Institute of Aging in collaboration with the University of Pennsylvania to further study how to drive better alignment between patients and their SDMs. This research is ongoing and results will be available in early 2024.

About Koda Health

Koda Health builds tools that simplify difficult conversations in healthcare. Clinically validated and research-driven, Koda’s flagship ACP tools provide payors and providers the ability to engage their patients in valuable conversations about their care preferences. Through Koda, patients have a single source to explore their values, identify a surrogate decision maker, define their quality of life, indicate treatments that matter, and complete and share advance directives — all without burdening their care team. By working with health systems and health plans, Koda increases revenue for billing providers, drives cost savings for at-risk systems, and ultimately is able to offer their services to patients completely for free.

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