What Gets in the Way of End-of-Life Care Discussions?

Studies show the majority of patients are open and willing to have conversations about end-of-life care, yet many report that the topic was not brought up early enough. In some cases, the subject was not broached at all.

A report in JAMA Open Network found “early discussion of end-of-life (EOL) care preferences improves clinical outcomes and goal-concordant care. However, most EOL discussions occur approximately one month before death, despite most patients desiring information earlier.”

Failing to initiate these discussions can lead patients to face treatment or hospitalization that is unwanted or unwarranted, or to pass away in situations that weren’t what they would have chosen. These experiences can be traumatic for patients and loved ones.

There’s no question that discussing the end of a patient’s life is among the toughest conversations healthcare providers have with their patients. ConsultQD recently spoke with Cleveland Clinic psychiatrist Natalie Jacobowski and colorectal surgeon Joshua Sommovilla, who shared guidance for opening this dialogue.

Create a safe space

“Discussing a patient’s death is the elephant in the room,” Dr. Jacobowski says. “For the patient, they might not bring it up because it's a scary topic, they think it’s not safe to talk about or they don’t want to be perceived as weak or ’not fighting.’ On the provider side, it’s also a hard topic to bring up and they may wait for the patient to give some indication that they are open to discuss it, so we get stuck in this cycle of avoidance.”

Acknowledging the patient’s fears is a step in the right direction. “You might say, ‘I imagine there are a lot of thoughts and worries. Is there anything that’s standing out to you that’s worrying you the most?’ That way, patients know it’s safe to talk about their concerns, and you know what’s important to that patient,” Dr. Jacobowski adds.

Start the discussion early

It may seem counterintuitive but discussions about end-of-life care shouldn’t wait until a patient needs hospice. “If the topic has never been discussed, it can feel like an ambush to a patient if it’s raised once they’re facing more progressive disease,” says Dr. Jacobowski.

Providers could frame the discussion even when initiating treatment that they’re hoping will prolong a patient’s life. They might also ask for permission to talk about ”what ifs,” such as what if the patient doesn’t respond as hoped. “Let them know that you’d like to know what they want and what their priorities are so that this can be included and factored into your conversations about treatment options. This opens the door to patients starting to share about hopes and worries. And by talking about it, it's creating a chance to comfort and address their worry,” says Dr. Jacobowski.

Level set first

Be sure the patient understands their prognosis. “As surgeons, we tend to consider ourselves people of action and want to jump in and fix a problem, but when people are in an end-of-life situation, you need to pause and determine whether the patient has an appreciation for where things are at the time,” says Dr. Sommovilla, who recently co-authorized a paper about shared decision-making in end-of-life care in relation to colorectal surgery. “If you’re not on the same page regarding that, you’re not going to have a productive conversation,” adds Dr. Sommovilla.

Follow a proven framework

There are several frameworks that can help providers navigate these difficult discussions. REMAP is a framework and a mnemonic device used for this purpose. The basic premise is to follow the steps below to guide the discussion:

• Reframe
• Expect emotion
• Map out patient goals
• Align with goals
• Propose a plan

“Often the first and most difficult step is to break bad news and deal with the emotions involved with coming to terms with that fact,” says Dr. Sommovilla. “That needs to be done before you come up with the best plan for that next phase of the person's life. If you skip over a step in dealing with emotions after telling someone bad news and jump into trying to come up with a plan, you're going to end up talking past each other. The unacknowledged emotion can interfere and not just upset the patient but prevent you from figuring out what’s most important to them and aligning care options with those goals.”

Allow patients time to process what you’ve said

It’s daunting for anyone to make decisions when they’re feeling distraught. Pausing during difficult conversations can allow for news to set in and give patients and their families room to experience their emotions. “In an uncomfortable situation, our reflex may be to keep talking. Allowing for a bit of silence can provide important space to help people process what you've shared and get to where they have a frame of reference to talk about next steps,” says Dr. Sommovilla.

Acknowledge how hard this is

“Sometimes if you can name it and say that it’s a hard topic to talk about, that can help,” says Dr. Jacobowski. For example, the provider might say, ”I brought this up because I want to be honest with you about my worries and what I’m thinking about,” and explain that you don’t have to continue the conversation at that very moment if they’re not ready to discuss it.

Keep informed consent top of mind

Emphasize that you’re having these conversations so that your patient has a voice in the process. “From a shared decision-making standpoint, we need to engage patients in informed consent. Part of that is them knowing the reality of what their situation is,” Jacobowski says. “For patients facing a relapse, that may be an appropriate time to discuss the benefit/burden ratio of next treatment options. Put yourself in the patient’s shoes and think about what you would want to know.”

Empower patients to lead the dialogue

“None of us like feeling out of control,” says Dr. Jacobowski. “Asking patients how much they want to know and how they like to receive information creates a gentle way to open a dialogue that’s respectful of their wishes.”

“If you’re hitting a point where you need to bring up end-of-life, maybe that’s a time to let your patient know that you’re worried that this disease is getting harder to treat and we might get to a point where treatments offer some benefit but a lot of risk. ‘Can we talk about those concerns together?’ This gives the patients some control by asking permission and also gives a little warning that something potentially difficult is coming next,” Dr. Jacobowski adds.

Acknowledge that you don’t have all the answers

Showing vulnerability may actually strengthen patient/provider relationships. “We’re all human and we want to have the answers for our patients,” says Dr. Jacobowski. “It’s ok to acknowledge to patients that while we wish we had a perfect answer in this situation, we don’t always have one.”

Lean on your team

Often when patients and families are having a hard time with a poor prognosis or serious illness challenge, it's helpful to get others involved so you're not doing it alone.

Just like you’d have additional support for managing symptoms, you can engage a multidisciplinary team to address the emotional stressors of the situation. This may include palliative care team members, hospice nurses, psychologists, psychiatrists, social workers and chaplains.

Involve your patient’s family

It’s common for family members to be afraid to bring up the topic of death for fear of upsetting their loved one who’s nearing end of life. Dr. Jacobowski points out that we don’t want the patient to be worrying alone. “In those cases, I might ask a family member if they think their loved one is noticing that their body is changing and if they think their loved one is worried about that. A lot of times the answer is yes. It can make them pause for a moment and consider that their loved one may be having concerns that they’re not voicing and need support,” says Dr. Jacobowski.

Actively listen

At this crucial time, providers can ask open-ended questions and also look for cues to what their patient and family are telling them. “Consider what the patient is looking to accomplish as they near the end of their life,” says Dr. Sommovilla. “There may be an important life event that they have circled on their calendar, or their goal isn't necessarily time but keeping comfortable. It's important to have those conversations and an understanding of how you can help support those specific goals.

“If the patient wants some of the additional support that comes with hospice, be really clear about what the goals are in those situations; once on hospice, patients usually have to forgo life-prolonging treatments except in cases like VA care where they can receive disease-modifying treatments along with hospice.”

Help patients understand that you’re not giving up on them

Discussions about transitioning from active treatment can feel overwhelming, and providers may worry that their patient will think they’re giving up the fight. “Sometimes controlling cancer is not a matter of the will of the patient, the family or the intelligence of the treatment team. Discussing the situation in that context can help everyone consider the situation and what they’re looking to aim for,” says Dr. Jacobowski. “Are we fighting for the patient to enjoy life and feel good for as long as possible? Are we fighting for them to stay at home? That’s still a fight. And it is also incredibly brave to say, ‘I’m picking these values when my disease is something I can’t control.’”

Dr. Sommovilla concurs: “Patients may worry that their doctor won’t be there for them if they go into hospice. It’s incumbent on us to be sure patients understand that it’s our job to take care of them when our treatments aren't able to do what we want them to do. And we're going to keep doing that.”

Care for yourself

Amid these challenging conversations, providers are prone to compassion fatigue, so self-care is essential. “When you spend a lot of time taking care of someone with the intent of curing them and things don’t go the way you hoped, it is emotionally taxing,” says Dr. Sommovilla. “Naturally it creates a feeling of failure, and confronting that can be hard.”

Providers need to give themselves some grace, and have the humility to recognize human limitations. “We’re not always going to be perfect,” says Dr. Jacobowski. “We need to support one another in this space. Talk with your team. Consider what restores you after a hard day, whether it’s time with family and friends, exercise or hobbies.”

Additional resources for physicians

1. Being Mortal: What Matters in the End by Atul Gawande
2. Clinical resources
3. Starting End-of-Life Discussions (podcast)