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How to Talk to Your Patients about End-of-Life Care

Why It Matters

Even seasoned health care professionals can have difficulty finding the right words to discuss end-of-life care.

End-of-life care conversations are rarely easy. Even seasoned health care professionals can have difficulty finding the right words. With this in mind, IHI developed a new toolkit to help address some of the challenges of engaging with patients and families in end-of-life care conversations over time. In the following interview, one of the authors of IHI’s How to Talk to Your Patients about End-of-Life Care: A Conversation Ready Toolkit for Clinicians describes how to use the case studies and sample dialogues in the toolkit. Kate M. Lally, MD, FAAHPM, is Senior Physician, Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute and IHI faculty.

How would you describe the Conversation Ready Toolkit for Clinicians?

The Conversation Ready Toolkit is a guide to help all of us improve the way we’re communicating with our patients around their end-of-life wishes. It could be used by physicians, nurses, social workers, chaplains, pharmacists, CNAs, or anyone else who wants to talk with patients about what matters most to them.

Many of us want to get better at having these kinds of discussions. We want to know the language to use. We want to learn how to have conversations that might cross boundaries of culture, age, and other kinds of differences, and have them in a way that’s respectful and feels more comfortable.

We created different cases for the toolkit. We wanted to acknowledge that different kinds of health care providers have these conversations and in a range of settings. They happen in nursing homes, ICUs, and oncology or primary care offices. Our goal was to create a toolkit that could be used anywhere to have better conversations with patients and families over the course of an illness.

Why did IHI create this toolkit?

It’s first helpful to be clear about what IHI means when we talk about being “Conversation Ready.” Clinicians in a Conversation Ready health system engage with patients about what matters most to them. They connect with people in a way that is culturally and individually respectful. They then steward this information by putting processes in place to ensure that patients’ wishes are recorded and respected when they reach the end of their lives. Conversation Ready also means exemplifying this willingness to have end-of-life conversations in our own lives and talking with our loved ones about what matters most to us.

As we’ve talked with health systems about these Conversation Ready principles and about putting the processes in place to improve the care we deliver to patients, it became clear that many of us need help with finding the right words to start these conversations and continue them over time. In addition, we want help navigating difficult situations. The toolkit offers guidance on addressing some of the most common challenges we see and offers examples of how to engage and connect with patients and families despite those challenges.

How do you imagine people using the toolkit?

Part of me envisions a nurse working in a nursing home. She wants her patients to have more end-of-life conversations. She’d like to lead some of those discussions, but she’s not sure how. I envision her printing the toolkit, sharing it with some of her colleagues, and using it to start a discussion about how they can best support their patient population.

I envision a social worker in a primary care office. He’s concerned about the patients with complex care needs who are in and out of the hospital. He shares the toolkit with the physicians and nurse practitioners he works with to open a conversation about how to learn more about what matters most to their patients.

You can sit down and read it all at once. You can read one case and consider its different components carefully. You can focus on various Conversation Ready principles outlined throughout the document.

One of the cases includes the scenario of tensions between family members. How can clinicians be most helpful when these kinds of tensions exist, especially when there are disagreements about a loved one’s care?

This is something I see every single day because family dynamics exist and they don’t go away when a loved one gets sick. In fact, they often heighten.

The case in the toolkit is about a man dying from dementia. His two children have very different ideas about the type of care that he would want at the end of life. That’s not uncommon. Anyone using this toolkit will likely face situations like this someday, if they haven’t already.

What I try to do in clinical practice is to start with the assumption that people are coming from a good place. They have good intentions. That’s not always true, but it is in the vast majority of situations. In the case in the toolkit, we have two adult children who love their father very much and have different views.

You start by remembering that no one is trying to hurt their father or make a bad choice. Then, you try to understand each person’s viewpoint. What have they seen? Why do they feel the way that they feel?

You talk with each of them to make sure they feel heard. You have to remember that the death of your father is something that will stay with you for the rest of your life. People need to feel that they did everything they could to advocate for him.

When you take the time to listen, you sometimes learn that there are misunderstandings you can help clear up. In the case in the toolkit, there was a misunderstanding about the patient’s prognosis. The daughter who has watched her father get sicker over time knew that time was getting short, so she was making decisions with that in mind. The son who lived out of state was not aware of how sick their father had gotten. He was making decisions as if their father was less ill and had more time.

The people in the case studies represent a range of experiences and backgrounds, including strong religious beliefs, racism, language barriers, etc. Why was this important?

As we put this tool together, we knew we were going to address some of the barriers that health care providers face in having these conversations. Over time, we also realized that we needed to address the reality that our patients live diverse and complex lives. We couldn’t represent all of that complexity and diversity, but we wanted to touch on some key issues.

For example, we include a case about a young woman who experiences a sudden cardiac event, and had never talked about her wishes. English is not her first language and she’s an immigrant. We wanted to depict how health care providers can communicate through the use of an interpreter, and offer tips for the best ways to do that.

No one can possibly know everything about every single culture or every patient’s experience. That should never be the goal. The goal should be to try to understand other people’s perspectives and realize that your view is not “normal,” but your own view and that there is bias inherent in that. Just as in the case with the siblings who disagreed, you need to take the time to learn how patients and their families understand the situation and why they’re making the decisions they’re making.

The toolkit encourages clinicians to consider their own preferences, assumptions, and biases when talking with patients about their end-of-life wishes. Would you please share a story that illustrates why this is so important?

There was a man with very advanced cancer who I cared for several years ago. It was clear to me, and clear to him, that he was dying. When we talked about his wishes, he talked about how he wanted to be comfortable and not have aggressive treatment. His girlfriend said, “No, you have to do everything. I want you to fight. I want you to stay alive no matter what.”

As I sat there, unsure of what to do next, he said to her, “If that’s what you want, I’ll do everything. I’ll go on machines. I’ll get aggressive care. I know I might suffer, but you’ll be left here when I’m gone. What matters most to me is that you’ll be okay.”

There was a time in my life when I would have said the girlfriend had no right to ask that of him. I would have said, “What matters most to him is comfort, so we should focus on comfort.” But to truly connect with what was important to him, I had to understand that what mattered most were the people he loved. More than anything else, he needed them to be okay.

Interestingly, as his girlfriend listened to him, she changed her mind. They decided to focus more on comfort. Learning what mattered most to him was important for both of us.

Editor’s note: This interview has been edited for length and clarity.

You may also be interested in:

How to Talk to Your Patients about End-of-Life Care: A Conversation Ready Toolkit for Clinicians

IHI White Paper - "Conversation Ready": A Framework for Improving End-of-Life Care