One of the hardest things that rehabilitation therapists must do is deliver bad news:
“Your swallow isn’t safe, and you may become ill.”
“Your husband will not be able to take care of himself without considerable assistance.”
“We need to talk about a feeding tube.”
These conversations can evoke emotional responses in both patients and their families, such as grief, sadness, disappointment, and perhaps even anger, which can be difficult to witness and navigate. We may also be faced with our own feelings of helplessness and failure.
In some situations, conflict may arise—patients who choose not to adhere to our recommendations; family members who can’t agree on the best path forward for their loved one; team members who disagree with our assessment. If these are conversations you must have on a regular basis, you may feel emotionally exhausted as a result.
Therapists often feel ill-equipped in these situations—and we are! Few of us got formal training about how to navigate these difficult conversations. So, what can we do?
1. Provide a Warning
Start the conversation by alerting the patient or family members that this will be a hard conversation to give them a moment to prepare. Statements like “I’m afraid the swallow study didn’t go well” or “I’m sorry, I have bad news” allow your listeners to brace themselves for what’s coming.
2. Strive for Simplicity
State the bad news as simply and clearly as you can. This information is going to be hard enough to process without the additional burden of complicated language, euphemisms, or professional jargon.
Consider the differences between “You won’t be able to eat and drink” versus “You’ll need to be NPO,” or “Her memory difficulties mean she can’t take care of herself and keep herself safe” versus “Her cognitive-linguistic deficits are impacting ADLs.”
Complicated information is best conveyed in simple terms. Before moving on to the next piece of information, check for comprehension and be sure the previous statement was understood.
3. Meet the Emotion
Many of us were taught that it is best to approach these difficult conversations by sticking to “the facts” and avoiding engagement with the strong emotions that patients and their families may experience. However, by acknowledging the feelings as they come, we validate our patients’ experience, which allows them to better process the information and ultimately be more receptive to our guidance.
Statements like “This must be hard for you,” “You sound frustrated,” or “It must be difficult to hear this about your dad,” let people know that you’ve heard them. Don’t try to change those emotions; they’re not yours to fix. Don’t dismiss the emotion by promising that all will be well, which you can’t know for sure. Your patients and their family members need to know that you understand and respect their feelings, whatever they may be.
This is not to say that you should put yourself in a dangerous or hostile situation. If an individual’s anger is escalating to hostility or potentially to violence, extricate yourself from the situation. Most of the time, however, an acknowledgment of the pain, anger, disappointment, or frustration can go a long way toward defusing those very strong emotional responses.
4. Ask, Don’t Tell
Sometimes it’s better to ask questions and let our patients and their families provide the information.
To obtain a better understanding of their perception of the problem, you can ask questions like “Can you tell me more about your swallowing difficulties?” “What did the doctor tell you about your cancer?” or “What’s your understanding of your mom’s condition?” These questions open the door to more informed conversations.
Questions like “Can you tell me what you might tell your family about what we’ve discussed?” help to identify gaps in comprehension or information you might need to review. We can use questions to determine when it’s appropriate to move to the next stage of the conversation, as well.
For example, instead of offering a close-ended direction such as “Let’s talk about next steps,” you can ask “Is there anyone else you’d like to include in our conversation as we start to plan for the next steps?” or “I know this is a lot of information. Is it OK to start to talk about options?” which allow space for the patient or family member to evaluate what they need and gather resources if necessary.
Accordingly, open-ended questions like “What questions do you have for me?” or “What is worrying you the most?” pave the way for ongoing conversation, rather than asking “Do you have any questions?” which can elicit a yes-or-no response.
5. Validate Your Patient and Their Journey
Let your patients and their family members know that you have respect for the enormity of the news and their response to it thus far. Statements like “You’ve done a great job with your swallow exercises” or “I know how hard you’ve worked to keep your mom at home with you” convey your regard for their experiences. It is also OK to say you’re sorry. A simple statement like “I’m so sorry you have to go through this” conveys your empathy and concern, which will make these conversations easier in the moment and going forward.
6. Employ the Power of Silence
Sometimes it’s best to stop talking. Becoming comfortable in the silence takes practice for most of us, but that silence can provide a few moments for much-needed processing time in the wake of bad news. Resist the urge to fill the silence with more information or with questions or to rush ahead in the conversation. Silence also lets your patients know that they have your full attention and that this time is theirs.
7. Emphasize Support on the Path Forward
As you bring the conversation to a close, find a way to convey your ongoing support: “We’ll be working together to find something that you can comfortably and safely swallow” or “I’ll be helping you to weigh your options going forward,” for example.
During these uncertain times, patients and their families rely on you for a sense of consistency and stability. Honor the commitments you make. If you promise to speak to another team member, then do that. If you offer to review the information later, do that too. They are counting on you to follow through on providing the information they need to make difficult decisions.
It’s never easy to give bad news, but if we can learn to do it effectively and empathetically, we can minimize distress, provide useful information, and assist our patients and their families in making important decisions during stressful situations.
In my course on dysphagia and end-of-life patients, you’ll learn specifically about the topics discussed in this article that may be challenging to present to patients and their families, including oral care and comfort, strategies for nutritional support, and alternatives to non-oral feeding.