Advance Care Planning Is An Ongoing Conversation, Not a Document

Denise Nicholson, BSN, RN

Advance care planning (ACP) is more than filling out a document or form, it’s an ongoing process, according to Denise Nicholson, BSN, RN, Advance Care Planning Program Manager at Gunderson Health System.

“I consider those to be a byproduct,” Nicholson said in a presentation on ACP as part of the 48th Annual Oncology Nursing Society (ONS) Congress. She began by imploring the audience to think of ACP as more than “instructions” for an individual’s last days or hours. Rather, nurses should view the process as putting the individual at the center of their own care. As she explained, ACP is not solely about how one wants to die; it defines by the parameters by which an individual wants to live. This can mean electing a family member or loved one to make medical decisions for the patient if they are suddenly unable to themself, or deciding at what point they would like their health care team to stop attempting life-saving treatments.

It is important to keep in mind that these conversations are fluid, she added. An individual’s preferences and decisions may change, and the conversation does not need to happen all at once.

Understanding Advanced Care Planning

ACP is for all adults, whether they are perceived healthy or facing an illness. Ideally, this conversation should begin once a person reaches age 18 years.

Specifically, advanced directives outline what care a patient would or would not want to receive in various situations. It is often interpreted that ACP is only related to terminal illnesses, but the reality is, accidents happen, Nicholson said. Even individuals who are young and healthy can unexpectedly find themselves in a situation where they cannot contribute to their own health care decisions.

“It gives individuals a voice and keeps them in control of their care at a time [when] they are most vulnerable,” Nicholson said. “It helps a medical team know how to care for a patient. Decisions made ahead of time help care go so much smoother.”

Although ACP conversations are not easy to have, oncology nurses are uniquely poised to help facilitate them, as they are forming relationships with patients and routinely help them navigate other aspects of their health.

“We have the opportunity to introduce the topic and normalize the conversation,” Nicholson said. “We can frame it in a positive, nonthreatening way.”

She asked the audience: If they found themselves in a situation where they were unable to speak for themselves, who would they want to be their voice?

In her experience, many patients have expressed that their spouse or their children understand their wishes. However, when all parties are made to sit down and discuss the directive, they often discover that they are not actually on the same page.

“What happens, happens,” is a phrase that Nicholson has heard from many of her patients. She noted that this statement could not be truer. ACP is powerful because it allows the patient to plan for what will happen instead of leaving the decision to other individuals.

Improving Advance Care Planning Skills

ACP skills and conversational skills are strongly tied together, according to Nicholson. Asking open-ended questions allows for better conversation and deeper understanding between nurses and patients. Similarly, paying attention to body language can plays a huge role in improving and encouraging conversations in this arena.

“Body language can convey a message without saying a word,” Nicholson said. She explained that leaning in, maintaining eye contact, and using a calm tone of voice all help a patient feel valued and supported throughout this conversation.

Additionally, a patient’s body language also provides clues as to how they are feeling. Signs of patient discomfort can include eye rolling, fidgeting, arm crossing, or turning away. Nurses should not be discouraged by this, but it should be a sign to proceed gently. In Nicholson’s experience, many ACP conversations may begin with a patient crossing their arms, and end in a hug.

“There may be tears, there may be laughter, there may be both,” she noted.

Affirming the Patient’s Experience

There are no right or wrong answers, nor good or bad decisions, when it comes to ACP, according to Nicholson.

“Value neutral,” she said, explaining that the nurse should seek to affirm or validate the patient’s story, background, and purpose, without casting value or judgement. This does not mean that the nurse needs to sit mute. There are ways to be empathetic without adding in opinion or values. For example, a nurse can say, “I see you’ve given this a lot of thought.” This affirms the patient as an individual and maintains neutrality. Another example may be “I am sorry you’ve had this experience; it sounds like you’ve been through a lot.”

Validating a patient's experience helps them to feel safe and to open up to their care team. Nicholson encouraged attendees to always seek to validate the patient experience, regardless of if it was positive or negative.

“Even the individual who shares a positive experience deserves affirmation or validation,” she said.

Ask Open-Ended Questions

Nicholson encouraged nurses to ask open-ended questions. Examples are as follows:

• For your pancreatic cancer treatment, what would be unacceptable to you?
• What would you like to do with the time you have left?
• What would make your life no longer worth living for you?

Although she recognized that in Western culture, discussion around end of life decisions often makes us unconformable, she encouraged the audience not to be afraid to say dying or death. She shared that she makes a point to ask patients, “What kind of death would you choose?”

For example, Nicholson wants red wine on her lips, a rock in her hand, and flameless candles present when she dies. Some may want a certain song to play. Others may want a priest present, or for a spiritual ritual to be performed.

“[An ACP conversation] is like peeling the layers of an onion,” she said. “Each individual is unique.”

For patients who are unprepared to provide answers, there are roundabout ways to bring up the same questions. For example, you can ask a patient about situations that their friends and families experienced and what their perceptions were; or you could cite an example from television and ask what they would want in a similar situation.

She acknowledged that many patients have never been asked before how they want to die. For this reason, she encourages speaking slowly and softly, allowing the patient time to respond, and reassuring them that they can change their mind later if they want.

Listen to Learn

Nicholson encouraged attendees to “listen to learn.” For example, if a patient says, “I don’t want to be a vegetable,” she needs to know how that patient defines a “vegetable.” She will therefore say, “what does that mean to you.” Another similar example is when a patient says they do not want to be a burden.

According to Nicholson, it is always okay to say, “Tell me more,” to gain clarity. When discussing concepts such as life support or feeding tubes, she always asks for clarity to ensure that she is on the same page as the patient.

After a patient has shared their thoughts and experiences, she encourages paraphrasing what they said back to them. This strategy not only ensures that you have understood the patient correctly, but it shows that you were listening and that you heard the patient.

At the conclusion of an ACP conversation, Nicholson thanks the patient for having the conversation and, if they haven’t yet, she encourages them to discuss their takeaways with a loved one.

Final Points

Some individuals are very matter of fact and do not want to dwell on the ACP conversation. They may want to fill out the forms right away and be done with it, and that is OK too, Nicholson said. If nurses pay attention to the patient’s body language, it can become clear whether they are open to the conversation.

Nicholson concluded that there are several different ACP forms with several different names that an individual can choose to fill out.

After an ACP conversation, it is important to document the patient preferences in their medical record so that the information is readily accessible. She also noted that sometimes a patient’s wishes may not align with your personal values. Even though these conversations should be centered around the patient, it is normal for oncology nurses to feel some uneasiness following a conversation. She encourages self-care techniques, such as journaling or going for a walk, to help alleviate this discomfort.

Finally, she stressed that ACP conversations are fluid in nature and often need to be done in stages. She encourages patience in helping patients consider their wants and needs and communicating that with their health care team.

“It is never too late, until it is,” she said.

Reference

Nicholson D, Nevins C. Advance care planning conversations: tools for success. Presented at: 48th Annual Oncology Nursing Society Congress; April 25-30, 2023; San Antonio, TX. Accessed April 25, 2023. https://ons.confex.com/ons/2023/meetingapp.cgi/Session/4943