Advanced Care Planning – What Matters Most to your patients?

I remember a case distinctly where the daughter of a patient was a vocal advocate for her dad. She clearly loved him dearly and it manifested in doing all things in all circumstances with maximal medical care. He was declining in function, in his upper eighties, with both peripheral and cardiac vascular disease as well as a recent admission for inferior wall MI. He was cathed and stented, almost certainly due to his daughter’s demand for all things medical intervention. As his health continued to decline, advance care planning was immediately becoming a glaring need. Specialty physicians were doing all things through the guidance of the daughter, but this was an important conversation to have with the patient to find out what mattered most to him.

He had sentient memory loss, but was clearly able to communicate what mattered to him. When care decisions had been made, he agreed with his daughter 100 percent of the time. It was time to dig deeper and find out how he really felt as his prognostic indicators indicated that now was the time.

I said to the patient, “I want to talk about what you would want done if you were to get sick again. It is important that I hear from you first and foremost. I am happy to have the conversation with both of you, or I can have the conversation with just the two of us.” He turned to his daughter and said, “I would like to speak with the doctor alone.” He then shared with me that he doesn’t want to go to the hospital again. He was ready for the end, and he wanted to focus on being with his family, he wanted to fish (which he could still do), and he wanted to stop being dragged to doctors appointments every week. He was very clear and had clearly thought about this and was ready to share when he was provided the chance.

What is Advance Care Planning (ACP)?

Advanced care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The timing and nature of ACP may vary depending on whether the person is healthy, has mild to moderate chronic illness, or has an advanced life-threatening illness and is thought likely to die within the next 6-12 months. Regardless of the clinical scenario, ACP should be proactive, appropriately timed, and, ideally, integrated into routine care. Through ACP, the specific wishes of the patient can be placed in an advanced directive to have a document that can serve as a reference to guide care that is consistent with their goals, values, culture, and preferences.

Here are a couple key principles of ACP:

• Advance care planning is an ongoing conversation about your patient’s wishes for the end of their lives. ACP should be revisited every time a person’s medical condition changes. Their advance directives can be discussed and revised as many times as necessary.
• Discussions about the end of life can be uncomfortable for patients and physicians, but the earlier they begin, the better. If you wait until the patient is near death, when the situation is often chaotic and stressful, this conversation can be even more difficult.
• The managing physician, frequently the PCP, is often in the best position to manage ACP discussions. Often the primary care physician has the longitudinal relationship to best approach this important topic at the right time.

The Importance of ACP

According to a 2021 study published in the Journal of Psychosocial Nursing and Mental Health Services, ninety percent of people think it is important to talk about end-of-life wishes with their loved ones, but only 27 percent have done so. 

Thinking through these issues and talking with patients—before a medical crisis when patients are well and looking to the future, or at the kitchen table with their loved ones rather than in the intensive care unit—will help patients, families, and us make decisions based on what patients value most, without the influence of acute stress and fear.

ACP involves both the conversation and the documentation that outline the patient’s wishes. The conversation timing of ACP is always a challenge, and often done too late, or not at all.

Initiating Conversations about ACP

1. Early Conversation – Use ACP as part of routine healthcare wellness visits. You can say something like, “Things are going well and you are healthy now. As a part of a routine wellness check, I ask all of my patients if they have given thought to what they would want done if, in the future, should your health change and decline?” 
2. Middle Conversation – This is timing typically after the onset of a new, significant medical condition or a recent hospitalization. It is often advised to reflect on the question about a patient, “Would I be surprised if this patient died in the next 6 months?” If the answer is no, it is definitely time to have this conversation with the patient and family.
3. Late Conversation – This is frequently where these conversations happen. This is both the most frequent type of ACP conversation, and the least ideal because it means you’ve waited until the patient’s life is measured in weeks or even days, and the discussion often must be done in one session. It is best to include the patient’s family at this stage, which adds both complexity and time.

Having these conversations is a critical part of providing care to patients. It’s simply an identification of their wishes and a designation of a health care surrogate decision maker with appropriate documentation. It can and should be part of routine wellness care, but it is often done when more immediate decisions have to be made in the context of an acute decline.

Knowing what matters most to patients is a powerful human connector and guiding principle in effective end-of-life care. Lift your head up, convey to patients your commitment to honoring them and what matters to them, and let them have their voice. I can assure you, you will benefit from this approach alongside your patients and their families.