Advance Care Planning: How to Have the Conversation You Want With Your Patients

My patient’s name was Tom, and I had been his primary care physician for almost 20 years. He was in his 80s and a “retired” farmer, which meant he worked 40 hours a week instead of 80. He came in for a Medicare annual wellness visit (AWV) one day, and I told him I was embarrassed that in all our time together I had never talked with him about advance care planning.

I said that although he was healthy I needed to ask if he had any documents that detailed what life-saving or life-sustaining measures he would want taken — or not taken — if his health dramatically changed. Would he want to be intubated or have CPR if his heartbeat or breathing stopped?

Tom, a very taciturn man, looked at me and replied, “If you bring me back from the dead, I will haunt you.”

We filled out a form that day to specify Tom’s advance care planning wishes, including a do-not-resuscitate (DNR) order.

Advance care planning (ACP) is one of the most important ways you can help honor your patients’ wishes. Studies show that most patients would rather die at home than in a hospital or nursing home,¹ and if asked to put their wishes in writing, 9 out of 10 say they want limited care or only comfort care at the end of their lives.² But a quarter of Medicare beneficiaries still die in acute care hospitals, and the percentage of patients who receive intensive care, or undergo multiple transitions of care, during the final 30 days of life has increased.³ Most of us have known patients who did not have advance directives and spent their final days in intensive care units undergoing multiple, costly interventions they did not want and enduring unnecessary stress and discomfort for themselves and their loved ones.

Any physician or other qualified health care professional can bill for ACP if they explain and discuss advance directives face-to-face with patients, their family members, or surrogates. The codes also cover the time needed to complete forms.

Physicians and patients were discussing advance directives long before CMS offered payment for it, but many patients still do not have the conversation, or if they do, it’s not until the very end of life.⁴ This is unfortunate, because earlier ACP discussions can prevent aggressive treatments that negatively affect patients and their caregivers.⁵

Why don’t we have these conversations? Patients may not start them because they think it’s too early to discuss the end of life. Physicians may not start them because we don’t think it’s the right time either, or we don’t feel comfortable or confident enough.

One way to overcome this discomfort is to stop calling it an “end-of-life” discussion and start calling it advance care planning instead. This not only avoids the finality that may frighten both patients and doctors, but also recognizes that we are helping patients consider their values and what is important to them, whether they are healthy or living with serious illness.

Another way to build confidence is to practice what you would say in these situations by role-playing. Practice with another primary care physician by walking through a clinical scenario, such as a 52-year-old engineer with pancreatic cancer and his doctor talking about what’s to come.

Some physicians may wonder if they are the best person to have the ACP discussion. For example, if the patient has cancer, shouldn’t the oncologist do it? The answer is yes, of course, but that doesn’t preclude the primary care physician from being part of the conversation. Everyone on the patient’s health care team should be asking what the patient wants. The oncologist understands the prognosis, survival rates, and complications of various therapies, but the family physician looks at how the condition or treatment fits into the bigger picture and how other aspects of the patient’s health are helping or complicating the situation. We can also consider the patient’s support system, because we likely treat some or all of the patient’s family. Family physicians are ideally suited for ACP because it builds on the long-term relationships we already have with our patients.

We can also help our patients know what questions to ask physicians in other specialties. I frequently tell patients to ask oncologists or cardiologists what they would recommend for their own family members in a similar situation. It’s a more comfortable, less dramatic way of getting to the information they want than asking, “Am I going to die?” or “Is this chemotherapy terrible?”

Starting an ACP conversation is a commitment. You have to be ready to sit with that patient for as long as necessary to discover and record the patient’s wishes, or have the necessary skills to begin the conversation and then continue it at a future appointment.

The timing of the ACP conversation dictates a lot of how you should do it and what you should cover. It’s best to start the conversation before the patient is critically ill, because the situation is less chaotic and the patient is less stressed. I find that I have three kinds of ACP conversations with patients:

Early. This conversation usually involves a younger patient with few, if any, health problems. I often have this conversation during a patient’s AWV, because it’s a good time to reassess the patient’s entire health picture. The goal of this ACP conversation is to get patients thinking about what will be important to them when their health changes, possibly many years in the future.

I typically give them handouts that explain advance directives and how to discuss them with their families. If the patient has already completed ACP documents, such as a durable power of attorney for health, I ask if they are still current (for example, if the patient has recently gotten angry with her daughter, she may now want to turn those decisions over to her brother).

The key points of your discussion with the patient must be included in the medical record. This satisfies CMS billing requirements, but more importantly it ensures that if you are not available when a patient’s condition deteriorates, your colleagues and staff can use the record to find the patient’s ACP information. One best practice is to designate a specific place in your electronic health record for advance directives and have pointers to the specific visits in which these discussions took place.

Middle. This conversation occurs when I consider a patient’s health on shaky ground. It is more serious and in-depth. I sometimes find that including ACP in transitional care management visits for patients who have been admitted to the hospital works well. Those patients may have just experienced the types of treatment they could experience again near the end of their lives and can reflect on which treatments they would be OK with having again and which they would want to avoid.

One way to determine if it’s time to have this discussion during a routine office visit is to ask yourself if you would be surprised if the patient died in the next year. If the answer is “no,” then it’s time to talk. The goal is to first make sure patients understand their medical conditions. Are they on the same page as you with the answer to that “surprised” question? Then, gain an understanding of what is important to the patients and their families. An easy way to start the conversation is to ask if they have any documents already prepared, if they have talked to anyone else about advance directives, and if they would be comfortable sharing how they feel. You can also use resources like the Serious Illness Conversation Guide (see “Resources”).

Some patients are not ready to have the conversation right away. I often tell them that in medicine our default is to do everything, and if that’s what they want, then we’re good. If that’s not what they want, then I tell them it’s very important that they talk to me, talk to their families, and get their wishes written down. Many patients will want to think about it, and I often send them to websites like MyDirectives to get more information, and give them forms to fill out. In my state, Kansas, you don’t need an attorney to fill out advance directives, but laws vary from state to state. The important part is you’ve got to start the conversation and follow through with it. It’s OK to be uncomfortable with the fact that your patient may be dying, and it’s OK to share that with the patient if it helps launch the conversation.

Late. 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. In this case, I let patients know this situation is real and that I need to know now what they want and what the goals are for their care.

This can be a very difficult conversation if you don’t already have a personal relationship with the patient. But you must make time for it and be ready for the emotions that the patient, family members, and maybe even you will have to work through. Remember that this is something family physicians are very good at — understanding a patient’s values.

I have become more comfortable having ACP conversations as I’ve seen them bring meaning to my patient care. No patients have refused to talk about it when I introduced the subject, and I find that once started, the conversation is never over. It just picks back up during our future interactions.

Sometimes people surprise you. I was convinced that one of my nursing home patients, Caroline, would want to cling to life using every possible intervention, but a conversation with her during an AWV led to a DNR order after she expressed very different preferences and goals. Her death eight months later at the nursing home, surrounded by her family, was exactly what she wanted, and I knew that because of the time invested. These conversations are critical to providing great primary care, and they’re one of the most important ways to serve our patients.