Approaching End-of-Life Discussions With Directness and Compassion

Kelley A. Rone, DNP, RN, AGNP-c

Mayo Clinic

Phoenix, Arizona

Approaching end-of-life discussions with patients may be uncomfortable. Learning how to speak with compassion while helping the patient understand what is happening is something that Kelley A. Rone, DNP, RN, AGNP-c, specializes in.

Rone, an advanced practice nurse in gastrointestinal (GI) oncology at the Mayo Clinic in Phoenix, Arizona, spoke with CancerNetwork^® regarding these discussions, and how she is trying to create awareness for the entire multidisciplinary team to be adept at having these conversations.

She is often one of the first people to mention the possibility of death to a patient, which can create a disconnect in understanding that their treatments may be doing more harm than good. She hopes, over time, end-of-life discussions will become more integrated into the multidisciplinary approach.

The conversation also focused on combating burnout, discussing opioid use to help manage pain, and the challenges she faces having these conversations every day.

“Sometimes [patients] just don’t want to hear that, and they don’t want to believe. We just have to try as best we can to make people understand that they’re probably not going to survive their cancer,” said Rone.

CancerNetwork: What is your role on the multidisciplinary care team?

Rone: In our practice, the advanced practice providers—myself and other nurse practitioners—work in conjunction with the medical oncologists. Our team consists of 5 medical oncologists, 2 nurse practitioners, and a variety of nursing staff and medical assistants who help navigate the process of our patients. My main role and the role of the other nurse practitioner is symptom management. The oncologist will see the patient initially and then [order] scans to review how their cancer is responding, and then myself and the other nurse practitioner will see patients in between to manage symptoms, make dose adjustments, and manage all the things that come along with [patients] who are getting treatment for a malignancy.

One of your specialties as a nurse practitioner is having end-of-life discussions with patients and educating oncologists. How do you approach those end-of-life discussions with patients, and what do they entail?

That is, of course, difficult. Most patients don’t want to talk about the fact that they may pass away from their cancer. Approximately 90% of the patients that I see in our practice have metastatic disease, and in most cases, those patients will eventually pass away from their cancer. What we try to do is have ongoing discussions with patients. We try to do it from the beginning, but not everybody is ready to have that level of conversation, initially. We try to weave that conversation in the ongoing visits that we have with our patients, talking about how they’re currently on treatment, but their cancer is for sure not going to be curable. Then, we have to manage it as long as we can.

We will often tell our patients that their cancer needs to be viewed more as a chronic condition, something like blood pressure, diabetes, or high cholesterol. Nobody expects to be cured of those diseases; they just have to be managed with medication. Of course, cancer is not the same as hypertension or diabetes because it's always changing. We have to try to be one step ahead of it, but eventually, we will reach the end of the treatments that are available to our patients. I will discuss with patients, “Your cancer is progressing; you’re not doing very well.” They’re having pain, or they can’t eat. If [patients] start ending up in the hospital all the time, I will often say to them, “We may be causing more harm by continuing to treat you because you’re having these [symptoms] every time we give you a treatment; you develop fevers, diarrhea, pain, nausea, and then end up in the hospital.”

I’ll have a discussion with the patient at that point and say, “If the goal here is for you to live as long as possible and enjoy the life you have, then we should probably stop treating your cancer because the treatment is giving you more difficulties than benefits. It’s time to stop. If you stop your treatment, you might live a little bit longer and enjoy the time you have left.” It's difficult. One of the things that I struggle with is that when I have these ongoing discussions with patients, I think they [initially] understand it. They’re planning their lives and doing things that they enjoy. Then, somewhere along the way, maybe they reach the end of their treatment course, and I’ll say, “Okay, there’s nothing left. You should probably go to hospice,” and they’re shocked.

Sometimes. I feel like we’ve failed our patients, even though I feel like we’ve been having that conversation all along. They haven’t been understanding it. That is one of the things that I struggle with because you don’t necessarily want to be abrupt and so frank as to say you’re going to die of your cancer, although I have done that. Sometimes, [patients] just don’t want to hear that, and they don’t want to believe. We just have to try as best we can to make people understand that they’re probably not going to survive their cancer.

What unique skills and knowledge do APNs bring to end-of-life care, and how does that differentiate them from other health care providers?

As nurses—I don’t know if physician assistants feel the same way that nurses do—we are taught to take care of patients from the beginning of life to the end of life. We are a little more comfortable, especially those of us who work in oncology, with the concept of death. Being comfortable talking about it is probably the biggest step that allows us to have that conversation. I believe in the concept of a good death because I’ve seen bad deaths. I would hope that all the people that I take care of have a good death vs a bad death. We can’t always get there, so you have to be comfortable with the concept of death. As Americans, we’re not comfortable talking about it. We think we're going to live forever, and we ignore that. That’s the eventuality that all of us are going to reach. [For] some of us, [it happens] sooner than we thought. You have to be comfortable with the idea that we’re all dying of something.

As patients are nearing the end of life, what are some pain or symptom management strategies that you use?

It depends on what their symptom is. One of the most difficult things to manage is fatigue. A lot of our patients are just tired. We talk a lot about how patients need to eat enough. A lot of our patients have a lot of nausea or pain when they eat, so they don’t eat enough. We work around how to get in more calories and how to group their activities. If they are more energetic in the morning, [they should] do the things they need to do in the morning so they can rest in the afternoon. A lot of our patients have pain, and a lot of people are very concerned about becoming addicted to opioid pain medications.

We start the education about pain management early in the process. We ease patients into the fact that they are probably going to need something stronger than acetaminophen [Tylenol] at some point in time, and you have to make it okay. There’s a lot of things in the news about the opioid crisis, and you have to explain to [patients] that this is the result of people prescribing things inappropriately, and that for a patient with cancer—someone who has a tumor somewhere in their abdomen or in their leg that is causing them pain and won’t go away—they are going to need something that’s a little bit stronger. We start educating patients about that early on.

You know the patients who are going to need more pain medicine; some of our patients go through their entire cancer journey without having any pain. You have to prompt that. A lot of the patients that I see have a lot of GI issues. I see a lot of patients who have pancreas cancer, and those patients will develop gastric outlet obstructions, so those patients will often have to get something like a venting G-tube. You have to educate, educate, and educate patients about the things that might happen to them. You don’t lay it all out for them all at one time. A lot of patients will start asking questions: “What’s going to happen at the end? What’s going to be the thing that that takes my life?” You can’t predict that, but you can lay out some scenarios for patients.

Is there anything else you want to highlight about the stigma around opioids and pain management and how patients are sometimes averse to wanting to use them in a controlled situation?

It’s sometimes quite difficult because I’ll see patients, and you can tell that they are struggling. I’ll say to them, “What, are you doing if you want the quality of your life to be better? Here at the end, you should probably do that; take a narcotic, and we can do it safely.” Sometimes, we just have to start small and work our way up to what they need.

How can clinicians or other members of the multidisciplinary team become more comfortable with helping to initiate conversations with their patients about end-of-life care? Should they always defer to you or someone in your role, or should they take that initiative themselves?

We should all have the conversation. This is just my opinion: I think with the way our physicians are educated, they don’t spend a lot of time focusing on the fact that their treatment might fail. Maybe one of the difficulties is that a lot of physicians feel like, “Well, we should keep doing what we’re doing.” [This is] especially [true] in younger patients. We’re seeing more and more younger patients, and a lot of times the physicians will want to keep treating somebody because they’re young. Why do we need to [keep] younger people [on treatment] just because they’re young? If this scenario was occurring in someone who’s 78 vs 38 years old, would you do the same thing for them?

Most of the oncologists that I work with are reasonably comfortable talking about this, but sometimes, it’s much more difficult for them based on the patient’s situation. I don’t know if you can make people okay with talking about death. Oncologists who are newer in the role may struggle with it a little bit more. As they become more seasoned, they become better at it. Some of the oncologists, though, are lovely, and I know they’re just not good at talking about death. With those oncologists, I [might say], “You should probably not have that conversation with the patient. I’ll take care of it.” If the patient is hearing it from all of us, that [the treatment] is not working, or this may not work at some point, then it’s much more easily accepted.

What is the most challenging part of having these conversations?

It’s the patients who are angry that are the most difficult because a lot of times, patients will direct that anger at you. You have to learn that it’s not you that they’re mad at; they’re mad at their cancer, but you’re the one sitting in front of them. The most difficult part is when people are so angry that they direct that anger at you.

How do you combat burnout and help maintain your well-being?

One of the best things about where I work is that we are a very cohesive team. All the people in the GI oncology team, the nurses, the nurse practitioners, and the medical assistants sit in one big room, and we talk about things and solve problems throughout the day. We spend a lot of time [together]. We have a potluck about once a week because it’s somebody’s birthday. We also do things outside of work as a group, and so that humanizes what we’re doing; it’s not so dark all the time.

Because I’ve worked in oncology for a long time, you have to have perspective, or you can’t continue in this role. This [role] helps you appreciate the finality of life. You don’t get upset about [minor] things after you see a 39-year-old with metastatic cancer. It’s hard to be upset by most things in life when you look at somebody who’s going through that and you [say], “My life’s not so bad.” You learn to have an appreciation for the good things and not dwell so much on the bad things. Are there some days that are harder than others? Absolutely. Do we go down a dark hole at times? Absolutely. But you have to recognize what’s happening and find a way to pull yourself out of it.

Is there a gap in knowledge that should be bridged regarding end-of-life discussions?

We are always learning. When you think you reach a point where you think you know everything, it’s probably time to go do something else. Just in oncology alone, there are so many changes that have been occurring. There’s no way to know everything. That’s one of the things about oncology in general: you have to pick 1 thing—maybe 2 things—and focus on it. My area of focus is symptom management, and one of the things that has been interesting to note that we’ve been focusing on lately is a lot of the molecular profiling. That is such a rapidly evolving field, and a lot of our clinical trials are directed at these specific mutations. That’s a very exciting new area in the field that probably has a lot of promise for maybe getting people to more longevity or even cure.

Is there anything else that you wanted to touch upon that we may not have highlighted today?

One of the things that I have been noticing lately is that with all the information that’s available to patients now, whether good or bad, a lot of our patients are very well-educated on their cancer and the latest [advancements]. I have lots of patients who ask about ctDNA. You have to come into a patient’s appointment with the fact that you don’t necessarily know what kind of Google searches they’ve been doing. Sometimes, you have to educate patients and direct them to better sources of information. It’s great when you have a patient who [says], “Well, what about this?” Because that challenges me to learn a little bit more as well. I have patients who come to me and say, “Did you know about this?” I’ll say, “Gosh, no, I didn’t know about that.” That prompts me to look more into things that maybe I wasn’t thinking about.