How Do I Talk to a Patient Receiving Palliative Care?

People can be nervous about talking to a family member or friend who has a life-threatening illness. It revolves around whether to acknowledge or ignore the seriousness of the illness when in conversation.  

The best advice is to be yourself and be open to talking about whatever the person brings into the discussion, and to be sensitive to the cues the patient may offer. Trying to ignore the illness altogether is probably going to feel awkward, but not every conversation needs to be about the illness or its progression. Most patients will guide the conversation as to what they’re comfortable talking about.
 

Saying the Wrong Thing

There is no special vocabulary for talking to people who are receiving Palliative Care. There is nothing wrong with talking about your day, a movie you’ve seen, or the vacation you just had. Think about what you would have talked about together before the person was ill, and start there. Feelings of discomfort about what to say will fade as you spend more time with the patient.

In an effort to protect the patient, you may hesitate to talk about the seriousness of the illness. Although shielding your friend or family member from sadness or worry may seem like a good idea, avoiding the topic altogether may make patients feel isolated and lonely. If they are raising fears about the future, acknowledge them and encourage discussion. Saying something like “tell me more about that” is one of the most helpful phrases you could ever use in any difficult situation, and is much more helpful than responding with silence.

Couples sometimes protect each other from their worries, trying not to add to each other’s burden. In a close relationship, however, the two people probably have similar concerns about what will happen when the other is gone, and find great relief in knowing they are going through the same emotional challenge. Rather than burdening each other, open discussion allows mutual support.

Even though people should try to be themselves at the patient’s bedside, there is still a need to be sensitive to the difficulties the patient is facing. Certain discussions are likely better held away from the patient’s bedside. For example, if family members are arguing or strongly disagreeing with each other about an issue, these discussions need to take place out of reach of the patient’s hearing, since they may add unnecessary stress to the patient’s life.

Listen Carefully

Patients will likely lead conversation away from subjects that make them uncomfortable. Let the patients control where the conversation is heading and recognize the hints they may give that signal they no longer want to talk, such as “I’m feeling tired,” or “I think I’d like to rest now.” Not every patient will be able to put their experience with illness into words, and patients who seem hesitant to explore their feelings should not be pushed to do so.

Visitors who can’t make sense of what the patient says should share these words or phrases with other family members or friends who might have insight into a possible metaphor or past experience of the patient. Family and friends can sometimes find significance in what the patient has said and later, these words may come to hold great meaning.

Patients who are nearing the end of their lives may want to talk about what they’ve seen or accomplished over a lifetime. Listening carefully sends a message to the patient that their words still hold value, and people care about them. Sometimes the patient’s words or meaning are not clear, and it’s alright to say something like “I’m trying to understand, but I’m having trouble right now,” so that the patient knows you are taking care to listen. If the patient is becoming frustrated because you can’t understand them, family and friends can help by offering to bring up the subject again later, when things might become clear.

Sometimes patients will make comments about things they see in the room that are not really there. They may talk about what they are seeing or even speak to their hallucinations. If the patient is not upset by the hallucinations, there is no need to correct them or point out there is nothing there. Sometimes people who are very near death make reference to people who have previously died, saying things such as “my father is waiting for me.” These types of comments should be acknowledged with supportive words rather than doubted or questioned. It is important, however, to tell the health care team if you notice a patient is becoming confused, since confusion can sometimes be reversed through assessment and treatment.

Providing Reassurance

Patients often experience confusion as a life-threatening illness progresses. Clocks or calendars can be brought in to help patients remember what day and time it is, but patients may still be unsure of where they are or who visitors are, even if those visitors are sons and daughters or life-long partners. Family members will naturally be distressed by the lack of recognition, but if possible, they should provide calm reassurance to the patient that everything is alright and perhaps take part in conversation, without insisting on being recognized.

Visitors can often be alerted to a patient’s anxiety by watching the patient’s face. If someone’s eyes are darting back and forth and the person seems anxious, there is no need to wait for the person to put that anxiety into words before offering gentle reassurance or acknowledgement. “How are you doing? You seem different today,” might be one way to approach a person who seems distressed and in need of support.

Sometimes people who are nearing death seem to want reassurance that it is okay for them to die. “It’s okay, you can go now,” or “We are going to miss you terribly, but we will be alright,” are words that may lead to a sense of calm or acceptance in the person who is dying. Patients who have been interviewed about dying sometimes say they feel they cannot die while a family member is still convinced they will come home one day. Sometimes the dying person may feel that they are the glue holding the family together, so letting them know that the family will continue to work to stay intact can provide reassurance and a sense of peace.

In the hours before death, patients may be sedated or no longer conscious. Family and friends should feel free to speak to the dying person in any case, and touch them if they feel compelled, such as holding a hand, or stroking an arm or forehead. No one can be sure whether the words will be heard, or touch will be felt or not, but even the act of speaking to them can provide comfort to family and friends who wish to say good-bye.