Motivational Interviewing in End-of-Life Care

Motivational Interviewing in End-of-Life Care

by Ellen Young
A social work intern grapples with a situation that would challenge even an experienced clinician: helping a loving wife decide whether to stop feeding her dying husband of 64 years.

Betty: A Case Study

When Betty answered the door and welcomed me into her living room, I couldn’t help thinking she looked almost like a different person from the Betty I’d seen just the day before: a neatly dressed, very composed 80-year-old woman. Today, her clothes were messy, her hair was disheveled, and she had bags under her eyes. Her husband, Frank, was resting in their room after his morning nursing visit. He had been diagnosed with prostate cancer a year earlier, and the treatment had been unsuccessful. The hospice team of which I was a member had been called in to assist with the final few days of his life, which is why we had met Betty and Frank the day before.

The nurse, spiritual counselor, and I had visited the couple in their home, as this was where Betty and Frank preferred for him to pass away. During the initial visit, Betty had engaged appropriately, was very pleasant and cooperative, and asked common questions about what to expect in this process. She had hired a caregiver for further support. She seemed to be coping well and had a strong supportive network with her children and neighbors. Frank had been a bit lethargic, but was able to engage with us as we discussed his care over the next few days. The visit had gone smoothly; we hadn’t expected any unusual problems.

But the morning after the initial visit, the nurse called me explaining that she had completed her daily visit and Frank had declined significantly overnight. He had been very lethargic and difficult to arouse during her assessment. Betty had asked the nurse if she could feed her husband, since he had only a few bites of food at dinner the night before and had not had breakfast. The nurse had informed her of the risk of feeding when a patient is closer to death, but felt that Betty was very resistant to this information. The nurse was calling me to ask if I could meet with Betty to address this resistance.

As a social work intern, this would be my first meeting alone with a client. As I was simultaneously enrolled in a graduate course on Motivational Interviewing, I decided to put my beginning skills to use.

Engaging the Client

I began by checking in with how Betty had been feeling since our visit the previous day.

“I feel good,” she said, “but I had a hard night last night with Frank waking up several times. He was moaning and confused, and even tried to climb out of bed. It really scared me, but I was able to call hospice and they walked me through giving him some medication to calm him down. It worked quickly and I was able to get some rest for a few hours.” She paused and touched her forehead absently. “I’m glad to have our caregiver here this afternoon so I can lie down and get more sleep. She was so helpful yesterday.”

I remembered from my MI course that open-ended questions, affirmations, reflections, and summaries (OARS) are key to building rapport and conveying empathy and understanding. When clients feel heard, they are not only more inclined to engage with the practitioner, but they are also more comfortable processing their ambivalence, and eventually reaching a resolution. I knew that Betty had had a fraught conversation with the nurse that morning, and that she must be feeling overwhelmed, so even though we had limited time, both in the session and in terms of Frank’s life, I began slowly.

“Wow,” I said. “It sounds like you had a difficult night caring for him. Caregiving for someone in the dying process is challenging. I’m really impressed that you’ve been doing this, while also recognizing you need some help and have hired a caregiver. I’m glad you called our main line for support, too. We’re always available to help.” The simple reflection and affirmation I used helped us start the visit well. Betty knew I was present and listening to her. I was also able to validate and affirm the challenges of providing caregiving at end-of-life and how well she was doing.

“I understand you met with the nurse this morning,” I continued, now that I saw Betty relaxing a bit in my presence. “How did that go?”

Betty paused and her voiced dropped. “Fine. She told me I should stop feeding my husband, but that’s hard because he could be hungry.” She paused again and then raised her voice. “She said that feeding him could hurt him, though. I’m not going to be the one to kill him!”

I reflected that Betty felt confused about what the nurse had told her about feeding.

Betty raised her voice again and spoke more quickly. “It’s really confusing. And it’s like she doesn’t really understand where I’m coming from.”

“She doesn’t see how much you value feeding Frank,” I nodded.

This exchange confirmed for me that Betty was struggling with understanding and accepting that her husband no longer needed to eat or drink as he was declining quickly. As the nurse had explained to her, feeding him would have likely caused more harm because as his body declined, it would not metabolize food and fluid as well, which could cause increased toxicity, pain, and discomfort.

Given the medical nature of this information, and especially because of the urgency of the situation, with Frank having only a few more days to live, it would have been tempting to believe that Betty’s inability to understand could be solved by intellectual persistence: maybe if someone explained the details to her again, she’d “get it.” But using an MI framework, I saw clearly that Betty needed to be met emotionally in her struggle before she could comprehend the medical problems that continuing to feed her husband would create.

In situations where there is a clear preferred outcome, it is often challenging for counselors and other helping professionals to steer away from what in MI is called the “righting reflex,” the temptation to tell the client what is best for her and what she ought to do. But this technique does not support client autonomy or self-determination, and defies the MI belief that the client is the expert. It also tends to pit the client against the therapist as an adversary or an authority against which to rebel. Telling Betty to stop feeding her husband could have caused her to shut down and damaged any trust she had in me that I understood her situation. Furthermore, the righting reflex may have robbed Betty of the opportunity to process her loss.

Change Talk

 It is important to note that Betty acknowledged that she heard that feeding could be harmful and even said, “I don’t want to be the one to kill him.”

MI emphasizes two concepts called “sustain talk” and “change talk.” Clients engage in sustain talk when they discuss the status quo, or give reasons why they cannot make a change. Betty had been engaging in sustain talk thus far in our conversation, going through her reasons for believing she should continue to feed Frank. Change talk, which is any mention of change as a possibility, marks a client’s willingness and preparedness, however slight or tenuous, for change. A clinician using MI should emphasize and explore a client’s change talk through reflections and open-ended questions. This allows the client to focus on change rather than maintaining the status quo.

Betty’s statement that she didn’t want to be the one to kill her husband identified her ambivalence and was an example of change talk. It let me know that Betty was open to exploring the possibility of refraining from feeding her husband in this final stage of his life, though clearly she had not yet reconciled herself to this option.

Before we examined the change talk, I wanted to reflect Betty’s ambivalence and confusion while stressing how much Betty loved her husband and wanted nothing more than to give him the best care possible. “You’ve really taken on the role of being his caregiver and part of that role is feeding,” I began gently. “The way you see it, just because he’s at the end of his life doesn’t mean you should stop that role now. And as you said, he could be hungry.”

Betty sat forward in her chair. “Exactly!” she exclaimed.

Sensing I had struck a chord with her, I continued. “You also said that you heard the nurse explain that feeding could be harmful.” Here I was able to focus on both sides of the issue: one the one hand, feeding was part of her role as caregiver, and on the other, she was aware that it was risky and could likely cause more harm, which she didn’t want.

“Yes, but I don’t really understand why,” Betty said, her voice heavy now, and she slumped back in her chair a little. “I know if people don’t eat, they die, so I don’t want to have that guilt that I’m not feeding him and he dies. He’s my husband, and I want to do the best job I can.”

Noting that Betty was moving back into sustain talk, I continued with affirmations and reflections to build a sense of alliance. “You have taken excellent care of your husband, and your family, for the sixty-four years you’ve been married. Feeding is not only part of caregiving, but also a way you show your love for him, which is something I definitely understand. It sounds like if you stop feeding him you’re scared that it could hasten his death, which would make you feel guilty, like you’re responsible for him dying.” I was able to use this complex reflection—drawing on Betty’s implied statements and feelings as well as the words she spoke—to assign meaning to the feeding, explore the sadness of her changing role as a wife, and allow her to process the fear of hastening her husband’s death.

“Yes,” said Betty. “I’ve taken care of everything all these years. The cooking, cleaning, laundry, shopping. And he likes that I do those things. I want to take the best care of him all the way until his last breath.”

I affirmed her role by saying, “Something I’ve seen from you in the times we have met is that you are a very dedicated, loving wife, who wants nothing more than to care for your husband, especially at the end of his life.” I began to understand that Betty’s roles as wife and mother were not only central to her relationship with her family, but also to her personal identity. Although cooking and her other activities seem like minute household chores, these activities were how Betty showed her love for her husband and children. If she was no longer feeding, how could she express her love, especially at this most intimate time in life?

As I reflected Betty’s deep desire to provide the best care to her husband in his dying process, she became tearful. “I’ve cared for him for so long,” she said, “and I’m feeling very overwhelmed about this. I just can’t believe he’s dying. We’re high school sweethearts. I can’t remember life without him.”

I could really empathize with Betty in that moment. Although she had been able to understand intellectually that her husband was terminal, the emotional impact of the dying process weighed heavily on her. Thinking about what her life would be without her husband was devastating. “This experience has been really difficult and emotional for you,” I said. “It’s hard to even imagine life without him.”

With tears filling her eyes, all she could say was, “Yes.”

Ambivalence, Not Resistance

 I was sensitive to not push her too far. We still needed to address the feeding, and if she became overwhelmed with grief, it would have been inappropriate to have that conversation. So I continued to affirm her. “I see just from listening to you that you and Frank are so incredibly in love and have been for a long time. You’ve created an incredible life together, have two wonderful children, three beautiful grandchildren, all are an extension of you two and represent your life and your love for each other.”

Reflecting on the lives patients and families have shared is a vital component in helping them experience a peaceful death with dignity. Processing their lives affirms they were special and facilitates closure. Here, affirming Betty’s desire to continue providing loving care helped her to feel understood and acknowledged. My acknowledgment of the specialness of her bond with Frank seemed to calm her down a bit.

I decided this moment was the opportunity to provide some education about Frank’s state, but first I needed to ask permission. Asking permission is essential in MI because it gives the client control of the session. In a careful tone I said, “Maybe if we could clear up some confusion about the feeding, then that could help you feel a little better and assured that you are taking the best care of Frank. Would it be okay if I shared some information with you about feeding at end-of-life?”

“Yes, I’d be okay with that,” said Betty. “The nurse just didn’t explain it to me well.”

“I can understand,” I said. “Sometimes we think it’s clear because we have this discussion often, but the family needs a little more education and I’m happy to provide that.”

“Yes. I just cannot understand how eating could be harmful.” She had become quite agitated again, her shoulders tense and limbs tense.

Maintaining a gentle tone, I explained, “It seems very unclear because when the body is healthy, it needs nutrients from food. As a person gets closer to death, the body doesn’t need the same amount of nourishment as it did when it was healthy. The body slows down and its metabolism slows down, so the food cannot be broken down at the same speed as when the body was healthy. Now that Frank’s body is slowing down, he can’t digest food in the same way, so the food and liquid gets kind of stuck in the body, causing more harm than good. I know that sounds strange, but does that make sense?”

She seemed puzzled. “So he can’t break down the food?”

“Exactly,” I told her.

I was becoming hopeful that Betty was beginning to understand the risks of feeding and we were about to make a break in resolving her ambivalence. But then she responded, “Well, what if I just give him less food?”

I suppressed a twinge of impatience. That question made me see that she was still unsure and possibly resistant to stopping the feeding. But although resistance can sometimes be frustrating for practitioners, an MI practitioner always rolls with the resistance and should avoid the righting reflex in times of client ambivalence. Betty’s question was simply her way of expressing that she was still unsure what was right.

Resisting the urge to use the righting reflex, I calmly said, “Well, sometimes that can be okay, but if the food is not soft and thick, there is a risk that it could go into his lungs and he would aspirate. That could cause an infection and actually hasten his death.”

My hopes that this education would help move discussion along were quickly halted when Betty said, “Oh. Well I’m glad to know this, but even if I gave him just a little, it couldn’t hurt him that badly, right?”

A Circuitous Route to Change

I was unsure how to move Betty out of her now entrenched sustain talk. Betty was trying to argue for feeding, even just a small amount of food. Sustain talk can be difficult to address, so I decided to offer some compromise and then affirm and reflect. With empathy, I said, “Well that is something that we can discuss with the nurse. I would just like to affirm what the food represents in your relationship. This is the way you’ve shown your love for your whole marriage, so that’s hard to stop that now. I know you don’t want to hasten his death by not feeding, but the scientific knowledge we have indicates that feeding could be more harmful.”

Betty immediately interjected with more sustain talk. “But he may be hungry,” she protested.

“I think that’s a great point,” I replied. “Unfortunately, we don’t know for sure if he is hungry or not.”

Betty interrupted and asked, “Do you think it’s better to not feed him because it’s more dangerous?”

I realized that Betty was looking to me as an expert, and as the hospice social worker, I was more of an expert on the issue. This is another temptation to resort to the righting reflex and simply use my authority to tell her she couldn’t feed him. But I reminded myself that this was Betty’s life and I did not know what was best for her. Any decision I made for her, she could still reject. She had to come to it herself. Furthermore, I needed to support her self-determination and autonomy. “Well, I think it’s better that you do what you feel most comfortable with,” I told her.

Betty appeared to appreciate this point as she sat back in her chair and relaxed her shoulders. My statement affirmed her autonomy and validated that I supported her self-determination. I realized I may not have acknowledged before that the choice had to be hers.

Although Betty had relaxed, she was somewhat hesitant. “I just don’t know,” she said. “This is so hard.”

I knew then that I needed to help Betty navigate the pros and cons of this decision. For this, I used an MI technique referred to as a decisional balance. Betty already had the information about the advantages and disadvantages of feeding and not feeding, but I needed to help her sort through them.

I asked Betty, “Well, what are some of the dangers of continuing to feed Frank?”

Betty reflected for a moment. “Well, he could choke. And you said the food could get stuck and he could aspirate.”

“Yes,” I replied, adding, “The body also cannot digest the food well, so it could store in his body and cause an infection. And what are some of the good things about continuing to feed him?”

Betty looked puzzled, but said, “Well, he wouldn’t be hungry.”

I gently replied, “Yes. If he is hungry, which we don’t know for sure and likely never will, the food could satisfy his hunger. But if the food doesn’t break down correctly or pass through his stool, then it could be more painful for him.”

Using the term “pain” seemed to resonate with Betty. Her eyes widened and she sat up in her chair. “Oh! I hadn’t thought of that. It could cause him pain?”

“Yes, think of it like this: if you eat more food than your body can handle, you get a stomachache. Now imagine not being able to get that built-up food out through your stool. That’s likely what it feels like.”

Betty smacked her arms down on the armrest and said, “Well, I definitely don’t want him to be in pain. Do you think that his pain and agitation last night was because I gave him some mashed potatoes?”

Betty seemed ashamed by this prospect. She moved in her chair and did not make eye contact with me.

Sensing her uneasiness, I softly said, “You know, we will probably never know. I’m glad that you knew to call for help when he was having new symptoms. That was very intuitive and shows that you knew what to do in a crisis.” I did not want Betty to feel guilty, because a number of factors could have played a role in her husband’s symptoms.

I wanted to return to the decisional balance to speed up our arrival at Betty’s decision about feeding her husband. “What are some of the bad things that could happen if you stop feeding him?” I asked.

“Well he could be hungry and that would make him more uncomfortable. But after talking to you, I'm not sure if he would be hungry because maybe he’s just too sick to be hungry,” Betty said sadly.

“So you’re thinking maybe he’s hungry, but we don’t know for sure. You also see that he could be far enough along in the disease process that his body isn’t feeling hungry anymore.” She nodded. To continue with the decisional balance, I asked, “And what would be the benefits of not feeding him?”

“Well you said that feeding could cause infection, so if I don’t feed him hopefully he won’t get sicker. Maybe he would live longer?”

A Breakthrough

I was so relieved to hear change talk: an acknowledgment of the possibility that Betty might stop feeding her husband. I felt that we were finally getting somewhere with her ambivalence. “He could live longer, and maybe even be more comfortable,” I told Betty.

“Yes, I want him to be comfortable,” Betty nodded.

“I want you to know that we really do understand how confusing it is to not feed your loved one at the end-of-life,” I affirmed. “It seems so unnatural because feeding is typically associated with us feeling better. And also with your relationship, feeding is not only part of your role as his caregiver for the past sixty-four years, but also the way you show him how much you love him.”

I wanted to ensure I normalized Betty’s ambivalence regarding feeding at end-of-life, as this is something that hospice clinicians discuss with families every day. Like many therapeutic interventions, normalizing is useful in MI because it makes clients feel comforted that they are not alone. This is especially critical in hospice because family members often feel isolated as their loved ones transition through the dying process. Affirming and normalizing Betty’s confusion regarding feeding, while also providing a complex reflection of Betty’s role as caregiver and how she expressed her love, helped us transition from the issue of feeding to ideas for how Betty could continue to express affection towards her husband in his final days.

“If we can brainstorm together other ways you could express your love,” I continued, “then maybe we can implement those into your caregiver role. Maybe things that are less risky, like reading to him, holding his hand, playing music for him. How does that sound?”

“That sounds nice. He loves reading.” A note of relief emerged in Betty’s voice. “We used to go to the library together and get books. Sometimes he’d read to me at night.”

“Wow,” I replied, “that is really special. So now you could maybe do that for him.”

She paused briefly. “Yes, I think he would like that. But can he hear me?”

Again, I wanted to avoid jumping into an expert role here, especially with what must have been an emotionally loaded question for Betty. “Well, what do you think?”

“I’m not sure,” she said. “He doesn’t respond like he can.”

“Would it be okay if I gave you some information about senses that some other families like to know?” I asked.

“Of course,” Betty said, “You’ve been so helpful, I want to know.”

“Well, we always ascribe to the belief that if there is breath, then there is hearing. Some studies have shown that hearing is the last sense to go before someone dies, so I always tell families to behave like their loved ones can hear them.”

“Yes, you’re right. I think he can hear me,” she said hopefully.

Peaceful Passing

Betty’s husband lived just two more days after this visit. I learned from the nurse that Betty’s husband declined even more the day after our visitand was actively dying, so I followed up with Betty and her children with telephone calls to assess the status of feeding and how they were coping. Betty and her children all confirmed that Betty had not tried to feed her husband again after our visit.

I learned from my bereavement telephone call that Betty spent the last two days she had with her husband reading his favorite books to him, writing him a long letter that reflected their life together and the impact it had on Betty, playing their favorite music on an old record player, and holding his hand and providing a supportive presence.

My visit with Betty not only provided her with important education about her husband’s dying, but also helped her process some of that anxiety so she could help Frank’s dying process be more dignified and peaceful. Like so many of the families I see, Betty needed someone to validate what she was feeling and also hear, understand, and affirm what feeding represented to her relationship with her husband.

Motivational interviewing skills, such as reflections and the decisional balance that I used with Betty, have been effective in my clinical practice with hospice patients and families who experience ambivalence with administering morphine for pain, hiring caregivers, or asking family members for help to protect the primary caregiver from burnout, and processing denial related to rapid decline.

Often families I work with are extremely concerned with doing everything “right,” so affirming that they are doing an excellent job caring for their loved one is very important for them because the feel empowered and validated. Although they may not be ambivalent about providing care, they are still at risk for becoming so overwhelmed that effective coping and a healthy life balance are damaged. Emphasizing individual strengths through genuine affirmations empowers the caregiver and results in better care and support for the patient. The patient having a peaceful death with dignity is not only valuable for the patient, but also for caregivers and family members as it decreases their risk for complicated bereavement.

The spirit of MI is rooted in the notion that the practitioner and client have a collaborative relationship. Once that relationship is established, the practitioner is responsible for evoking the client’s motivations, perspectives, and autonomy. Starting the visit with exploring and reflecting Betty’s motivations, understandings, and feelings regarding feeding allowed us to make progress on this issue. If I had come into her home telling her why she should not feed her dying husband, she likely would not have listened. Furthermore, she would not have had the opportunity to process their life and the emotional impact of her husband’s death.

MI techniques emphasize and foster a collaborative therapeutic relationship, which is critical in hospice work, and more generally in working with individuals and families coping with terminal illness. We clinicians are not the experts in our patients and families’ lives or their dying process. Using MI techniques not only helps hospice patients and families process their ambivalence, but are also extremely valuable in conveying empathy in a way that moves towards change.

My work with Betty was the first experience I had in applying MI to my clinical work in hospice. I was initially unsure how the MI skills, specifically reflections and affirmations, would help Betty resolve her ambivalence, but this experience showed me their value. I believe that my ability to avoid the righting reflex and simply repeat back to Betty her confusion and fear helped her feel heard and validated. The reflections also allowed her to process her thoughts that supported the ambivalence. These skills helped us establish a collaborative relationship as I was sure to never make her feel I was the “expert.” Although Betty saw me as more knowledgeable of the issue of feeding, I was not more knowledgeable in what was best for her. These skills allowed me to use the decisional balance, which ultimately led to her resolving her ambivalence and not feeding her husband again.

I feel tremendously honored to have the opportunity to work with hospice patients and families. Being present with patients in their dying process, and supporting their families as they navigate the demands of caregiving and effects of anticipatory grief, is an incredible privilege. I believe strongly that everyone deserves a peaceful death with dignity and am passionate about being part of providing that experience to all of my patients and families.  

© 2012 Psychotherapy.net, LLC
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Ellen Young Ellen Young, MSW, CCLS, is a new grad of San Diego State University's School of Social Work. Ellen worked as a Child Life Specialist at Mattel Children's Hospital UCLA before returning to graduate school for her master's degree. While in graduate school, Ellen discovered her passion for medical social work, specifically with hospice and palliative care. Ellen is currently living in New Orleans, Louisiana, and hopes to continue working in the healthcare field, helping patients and families cope with stress related to trauma, illness, and end-of-life care. Ellen can be reached at eoyoung1@gmail.com.

CE credits: 1

Learning Objectives:

  • Apply MI concepts and techniques to an actual counseling session in a hospice setting
  • See MI strategies in action over the course of a conversation
  • Distinguish the flow of assessment and response in an ambivalent client through an MI lens