Topic: 12

How to Communicate with Someone with a Life-Limiting Illness

PDF Download a PDF version of this topic… HPCO - Topic 12

Use the player to hear an audio version of this topic…

What You Need to Know

The knowledge that death is not far away can colour all aspects of daily life. Feelings of shock, numbness, disbelief, panic, helplessness and hopelessness are all common. Despite these feelings, it is very important to keep talking with the person who is ill and nearing the end of their life.

But, what do you say? What shouldn’t you say? Many people worry about saying the wrong thing and so withdraw and say nothing, thereby isolating the person. However, the last thing a person needs at this time in their life is to feel isolated or alone.

Good communication depends on empathy or the sincere belief that “I am here with you; I give you hope and I share in your feelings.”

Communication Tips

Follow these communication tips:

Encourage hope: Help the person maintain “realistic” hope. Hope rarely disappears—it just changes. Hope for a cure may change to hope for comfort.

Be honest: Avoid isolating the person by telling them things like “You are going to get better.” Or “Everything will be fine.”

Follow the person’s lead: If they want to reminisce about life or talk about death, then do exactly that. The more you listen; the more you can “hear”.

Silence is important: Do not force conversation. If the person wants to talk, listen and talk. If they don’t want to talk, don’t.

Accept the person’s disappointment then move on: If the person dwells on life’s disappointments, acknowledge the disappointment, validate their feelings, and say things like: “I know this is so hard.” Then talk about positive memories.

Accept the person’s feelings: Do not argue with a person in denial. Denial may be the best defence mechanism that helps the person cope and caregivers have no right to take that away. Use open-ended questions like “There is a large part of you that believes that you do not have…What part of you does believe that you have…”

Respect that the person can hear you: Never talk about the person without acknowledging them and including them in the conversation. The sense of hearing is often the last to go.

Do not take anger and resentment personally: Remember the old expression that we take out our frustration on those we trust most.

Be solution-focused rather than problem-focused: You cannot change the past. But you can change what happens from now on. You will start to be solution-oriented once you are aware that you cannot change certain facts or problems.

Non-Verbal Communication

Non-Verbal Communication is a powerful way of communicating. Sometimes it is difficult for us to listen because the other person isn’t talking; but that doesn’t mean they aren’t communicating. All people, sick or well, use facial expressions and body language to communicate. As a caregiver you should be highly attuned to all communication from the person that you are caring for even when the person communicates without using words.

Active Listening

Listening is one of the most important skills that you will use as a caregiver. How well you will listen to the person that you are caring for will have a direct impact on your relationship with that person and with others. Given how important listening is in our lives, you would think that we would all be better at it! In fact, research tells us that we remember about 25% of what we hear. One of the reasons that we don’t hear as much as we should is because we aren’t listening fully or actively.

To listen fully means to pay attention to what is being said beneath the words. You listen to not only the “music” but to the essence of what is being said. (Peter Senge)

To listen actively follow these steps

  1. Pay Attention
  • Look at the speaker directly.
  • Put aside distracting thoughts.
  • Don't mentally prepare a rebuttal!
  • Avoid being distracted by environmental factors. For example, side conversations.
  • "Listen" to the speaker's body language.
  1. Show That You're Listening
  • Nod occasionally.
  • Smile and use other facial expressions.
  • Note your posture and make sure it is open and inviting. No crossed arms!
  • Encourage the speaker to continue with small verbal comments like yes, and uh huh.
  1. Provide Feedback
  • Paraphrase what you have heard by putting it in your own words, and then reflect on what you have heard.
  • Ask open-ended questions to clarify certain points. “What do you mean when you say…" is an example of an open-ended question because it encourages the person to say more. “Is this what you mean…?" is an example of a closed-ended question because the person can simply say “yes” or “no”.

Note: Sometimes it is appropriate to use a close-ended question and sometimes it isn’t. When you need a precise answer—for example—“Would you like eggs this morning?” then a closed-ended question will work just fine. When it comes to thoughts and feelings open-ended is the right choice.

  1. Defer Judgment
  • Allow the speaker to finish each point before asking questions.
  • Don't interrupt with counter-arguments.
  • Be patient. Silence is okay.
  • Accept what the person is saying, however different it may be from what you think.
  1. Respect and Validate the Feelings Being Shared
  • Treat the other person in a way that you think he or she would want to be treated.
  1. Use “I” Statements
  • Try using “I” statements. “I know you didn’t enjoy the dinner tonight; let’s talk about my being late because I know that’s really bothering you.”
  • Say things like “I want to help and I need you to tell me how.”

What to Say and What Not to Say to a Person with a Life-Limiting Illness People wonder what they should say to a person with a life-limiting illness. Decide if each statement below is something that you should or should not say to a person with a life-limiting illness. Then check that you are correct.

  • I understand how you feel.
  • Are you feeling sad?
  • Death is a blessing.
  • How are you doing with all this?
  • You have your whole life ahead of you.
  • What can I do for you?
  • You’ll feel worse before you feel better.
  • I’m here and I want to listen. Please tell me what you are thinking.
  • Something good will come of this.
  • It isn’t fair is it?
  • Be strong!
  • Take all the time you need.

What to Say/ What Not to Say

  • I understand how you feel. NO!
  • Are you feeling sad? YES!
  • Death is a blessing. NO!
  • How are you doing with all this? YES!
  • You have your whole life ahead of you. NO!
  • What can I do for you? YES!
  • You’ll feel worse before you feel better. NO!
  • I’m here and I want to listen. Please tell me what you are thinking. YES!
  • Something good will come of this. NO!
  • It isn’t fair is it? YES!
  • Be strong! NO!
  • Take all the time you need. YES!

Communicating with people who cannot speak

  1. Don’t be afraid to talk. Share things from your life. Read to the person.
  2. Look the person in the eyes and smile. Even ask the person to blink once for yes or twice for no.
  3. Touch the person. A gentle touch of the hand, a stroke of the hair, a kiss on the cheek or forehead can all be welcome gestures of affection.
  4. Make cue cards or picture cards to help you understand what the person would like.
  5. Use Blissymbolics a semantic graphical language that is currently composed of more than 5000 authorized symbols - Bliss-characters and Bliss-words. It is a generative language that allows its users to create new Bliss-words as needed.

 

1. Read this scenario

Marie has been seeing Dr. Johnson for several months now. One morning Marie says to you: “I used to think Dr. Johnson was a good doctor but I’m not so sure. He just doesn’t seem to care. I have to wait endlessly in the waiting room even though we make the appointment weeks in advance. Then when we get in, he rushes out so fast I don’t have a chance to talk to him. He doesn’t have time to talk to me. I don’t even think we should bother going back to see him.”

2. You want to be an active listener so try paraphrasing what you have heard Marie say. Jot down what you might say before checking the sample answer below.

Sample response:

“I hear you say that because the doctor has so little time that you feel like it is a waste of time going to see him.”

3. What question could you ask to clarify what you have heard? Jot down what you might say before checking the sample answer below.

Sample response:

“Do you have specific questions for the doctor?” or “Would it be worth going back to see the doctor if he made more time for you?”

4. You don’t want to be argumentative but you think Marie should keep seeing the doctor. However, Marie is feeling disrespected by the doctor. You can’t control how the doctor behaves. What suggestion could you make so Marie feels more respected at the next visit? Jot down what you might say before checking the sample answer below.

Sample response:

Advise Marie to write down her questions ahead of time and record the doctor’s answers or offer to ask her questions for her after you discuss them together.

 

Use these additional resources to learn more about the topic of how to communicate.

Communication with a person who is physically or mentally impaired can be difficult. It is important to listen and speak very clearly while using non-verbal communication or body language to help the person understand what you are trying to say.

Select the link that applies to the person you are caring for to learn more.

Communicating with the Hearing Impaired
https://www.chs.ca/communication-tips-0

Communicating with the Visually Impaired
https://www.cnib.ca/en/sight-loss-info/when-someone-you-know-blind?region=on

Communicating with those who have Speech-Language Disorders
https://www.osla.on.ca/en/ServicesinOntario

Communicating with those who have Alzheimer’s disease or Dementia
http://www.alzheimer.ca/en/Home/Living-with-dementia/Ways-to-communicate

Blissymbolics Communication International
http://www.blissymbolics.org/

Importance of Communication