Patient-Obstructed Care? (12 mins)

Patient Decision-Making is supposed to be the goal, but just defining it can cause a heated argument. What prevents it from happening, and how can we overcome those barriers? This episode uncovers a missing piece in patient decision-making, and offers recommendations for a solid patient-centered framework.
Key Points:
-Speak Up campaigns
-Obscure language
-Precision Risk

References:
-The Joint Commission (2024). Facts About Speak Up. https://www.jointcommission.org/resources/for-consumers/speak-up-campaigns/facts-about-speak-up.
-Joseph, C. (Jan. 31, 2024). Trust or Bust: Healing Healthcare’s Credibility Crisis. Nordic Global. https://www.nordicglobal.com/blog/trust-or-bust-healing-healthcare-credibility-crisis.
-Krist, AH; Tong, ST; Aycock, RA; Longo, DR (2017). Engaging patients in decision-making and behavior change to promote prevention. Studies in Health Technology and Informatics, Vol. 240: 284-302. DOI: 10.3233/978-1-61499-790-0-284.
-Agency for Healthcare Research and Quality (July 2014). The SHARE Approach. https://www.ahrq.gov/health-literact/professional-training/shared-decision/index.html 

Transcript

What’s the Missing Piece in Patient-Directed Healthcare?

My diminutive grandmother spoke gently but firmly. “I don’t want to take so many pills anymore. They’re getting harder to swallow and they taste bad. I want to make some cuts to my medication list.”

“Okay,” her family doctor said. “Do you care about your cholesterol right now?”

“No,” she said.

“Great, we’ll cut that one. And it looks like your blood pressure is stable. Should we make the nurses cut that pill into quarters, just for kicks?”

“Yes,” she giggled.

“Excellent. And how about this aspirin. Are you worried you might have another heart attack?”

“Well, doc. To be honest, I’d love to go that way – it’s a quick trip to heaven, from what I hear.” She nodded for emphasis.

“Alright then, we just have 5 left and I think the multivitamin can definitely go. Are four pills a day okay with you?”

“That’s fine. Thank you so much.”

My grandmother knew the risks, but her priorities had shifted. She wasn’t on hospice, but she was in her nineties and a widow, and for her quality of life, it was more important to throw out the bitter pills (pun intended) than to attempt to extend her life another twenty years.

In 2002, The Joint Commission created the Speak Up campaign for patient safety to help patients and their caregivers become active in their care.[1] Using videos, posters, and other patient communication materials, the campaign encourages patients to say something if they have concerns or questions. This may seem obvious, but when confidence is high and understanding is low, there is a greater risk for error. That’s why patient engagement was identified more than two decades ago to prevent adverse events.

2002 was a while ago, so how’s it going today? 

Well, patients are certainly less trusting now in a post-pandemic environment, but they still have very little control over decision-making in their healthcare. Not even doctors have the control they once exercised. There is so much bureaucratic authority – and money – going into healthcare, that the patients’ input is at best an afterthought, at worst an impediment to the goals doctors are now required to meet. This is evidenced by our clinical quality measures, which can be unforgiving when it comes to patient refusals. For example, my grandmother’s doctor would likely be penalized today for not prescribing a cholesterol medication in accordance with her wishes. This is hardly conducive to patient engagement when the patient has no right of refusal.

Dr Craig Joseph of Nordic Global consulting, author of the book Designing for Health: The Human-Centered Approach, made an excellent point on this topic. In a recent blog post he writes, “Transparency is key to rebuilding trust. This means being open about treatment options, costs, and the benefits and risks of procedures. Healthcare providers should involve patients in decision-making processes, giving them a sense of control and partnership in their care.”[2]

We’ve lost trust as an industry, but we can gain a lot of ground if we begin to give decision-making back to patients and the providers they know and trust. But if I asked a group of healthcare stakeholders what patient-directed healthcare looks like, I would inevitably receive distinctly diverse responses. Everyone has their own idea about what that should look like. But that’s kind of the whole point, right? Patients want different things and in an individualized approach it can be difficult to extrapolate unified standards. And without standards, how can we measure the effectiveness of our care?

Perhaps knowing what the patient desires as a likely outcome of their care might be a better measurement.  How about having a good-faith dialogue presenting them with options with what might be expected with different treatments: the good and the bad?

how can a provider have a good-faith dialogue about treatment options with a patient?

There are so many barriers: Medical terminology and increasingly complex scientific advancements are difficult to explain in laymen’s terms, a litigious culture, our patient’s heightened emotional state when discussing life and death decisions, and a variety of social and financial factors that can influence the discussion.

The Studer Group describes how patient decision-making requires education resources to advance health literacy, and that part of selecting a treatment plan involves a balance between goal setting and establishing reasonable expectations – this is an important give-and-take moment between patients and providers and allows for the nuance of individual circumstances and values.[3] 

These are great goals. But it would require a unified approach to create a library of healthcare treatment options, with significant funding and long-term maintenance to stay current with the fast pace of medical innovation. I am still waiting for a comprehensive pre-op library for patients to fully understand what to expect from their surgery, so they can spend their brief time with the surgeon asking more personalized questions about the plan of care.

Likewise, AHRQ’s SHARE Approach is a 5-step process for shared decision-making, including the need to seek participation from the patient, help patients explore treatment options, assess values and preferences, reach a decision together, and evaluate the decision.[4] The decision must be documented, and the patient’s rationale should be included in the documentation.

In these examples, trends are beginning to emerge. Education about options, a discussion of what is both reasonable and desirable for implementation, and a plan for evaluation of progress are essentials that seem obvious yet applying them improved metrics such as quality of care delivered and patient satisfaction. The measurable improvement tells us that it does not always occur, which means these models are either not so intuitive or not as feasible as we would hope.

I believe there is a missing piece.

There is unique risk to both the provider and the patient in every discussion of treatment, but the risk discussion is universal and depersonalized. 

It’s like trying to fit a square peg into a round hole. Risk is unique and how patients feel about risk is a personal matter.

The provider often struggles to have an honest conversation about risk though – most providers fear the human fallibility of their professional opinion, knowing it could be turned against them in a lawsuit. It’s safer to say nothing than to say something that could go wrong because if it does, the patient will want an investigation.

The patient fears disability and death and is highly concerned about the investment of others in their personal healthcare decisions. After all, it is their body that will experience the outcome and not that of outside stakeholders.

The discussion of risk that occurs today has become a canned discussion to the effect of, “in rare cases, you could get worse, require blood products, become disabled, or die.” And many patients become desensitized to this universal warning. It’s like alarm fatigue on the floor. At some point, patients just start tuning it out.

The biggest clue to what a healthy discussion of risk should sound like is based on the conversation that happens after a treatment: “You were a difficult patient because of x condition and also because of this specific modifiable habit.”

If a poor outcome can be explained by an individual risk factor, shouldn’t that risk factor be discussed prior to treatment? “If we begin this treatment, it could be affected by this condition and that lifestyle choice,” would be a dramatically different and more meaningful approach because it is focused on the individual who must bear the consequences: The patient.

For one thing, if my doctor told me before surgery that my risk of infection is a percentage higher due to uncontrolled blood sugar, and then gave me a choice: 1) Proceed with the surgery knowing I’m at a higher risk of infection, or 2) take time to control my blood sugar to mitigate the risk of infection, then I would be the one shouldering the weight of that risk. 

What a relief to the provider to be released from the god-like responsibility—and liability—of my potential non-compliance. And how empowering for the me to have control of my own health decisions. This is a dramatically different and more meaningful approach because it is focused on the individual who must bear the consequences: The patient.

As a nurse, I can say that the most common reason patients did not become more involved in preventative care efforts was when they did not understand the rationale. Why should I do it? How will it help me? What could it do for my health? If patients understood how much it could improve the outcome of their treatment, they might care a lot more about our quality indicators and clinical goals.

Patient Risk should not be a dirty word for clinicians to avoid—it is not a liability. Rather, it is an opportunity to empower patients with their own liability and cede some of the control and decision-making to the people who care the most.

And perhaps we could reward patient engagement for a change. No patient lobby can fully compete against the funding of a robust pharmaceutical industry, but if only for moral and humane reasons, perhaps we could stop rewarding how many cholesterol pills a clinic is able to get down my 90-year-old grandmother’s throat and start asking if the clinic is meeting her healthcare needs.

[1] The Joint Commission (2024). Facts About Speak Up. https://www.jointcommission.org/resources/for-consumers/speak-up-campaigns/facts-about-speak-up.
[2] Joseph, C. (Jan. 31, 2024). Trust or Bust: Healing Healthcare’s Credibility Crisis. Nordic Global. https://www.nordicglobal.com/blog/trust-or-bust-healing-healthcare-credibility-crisis.
[3] Krist, AH; Tong, ST; Aycock, RA; Longo, DR (2017). Engaging patients in decision-making and behavior change to promote prevention. Studies in Health Technology and Informatics, Vol. 240: 284-302. DOI: 10.3233/978-1-61499-790-0-284.
[4] Agency for Healthcare Research and Quality (July 2014). The SHARE Approach. https://www.ahrq.gov/health-literact/professional-training/shared-decision/index.html.