{"id":178,"date":"2017-12-08T14:11:46","date_gmt":"2017-12-08T19:11:46","guid":{"rendered":"http:\/\/pbdev.ca\/ocp\/?page_id=178"},"modified":"2020-12-14T12:32:17","modified_gmt":"2020-12-14T17:32:17","slug":"topic-12-how-to-communicate-with-someone-with-a-life-limiting-illness","status":"publish","type":"page","link":"https:\/\/caregiversupport.hpco.ca\/ocp\/topic-12-how-to-communicate-with-someone-with-a-life-limiting-illness\/","title":{"rendered":"Topic 12: How to Communicate with Someone with a Life-Limiting Illness"},"content":{"rendered":"
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Topic: 12<\/div>\n

How to Communicate with Someone with a Life-Limiting Illness<\/span><\/h2>\n<\/div>\n<\/div>\n<\/div>\n
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\"PDF\"\u00a0Download a PDF version of this topic<\/a><\/span><\/p>\n

Use the player to hear an audio version of this topic\u2026<\/span><\/p>\nhttp:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/01\/Topic-12.mp3<\/a><\/audio>\n<\/div>\n<\/div>\n<\/div>\n

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What You Need to Know<\/div>\n

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.<\/p>\n

But, what do you say? What shouldn\u2019t 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.<\/p>\n

Good communication depends on empathy or the sincere belief that \u201cI am here with you; I give you hope and I share in your feelings.\u201d<\/p>\n

Communication Tips<\/span><\/h4>\n

Follow these communication tips:<\/p>\n

Encourage hope: <\/strong>Help the person maintain \u201crealistic\u201d hope. Hope rarely disappears\u2014it just changes. Hope for a cure may change to hope for comfort.<\/p>\n

Be honest: <\/strong>Avoid isolating the person by telling them things like \u201cYou are going to get better.\u201d Or \u201cEverything will be fine.\u201d<\/p>\n

Follow the person\u2019s lead: <\/strong>If they want to reminisce about life or talk about death, then do exactly that. The more you listen; the more you can \u201chear\u201d.<\/p>\n

Silence is important: <\/strong>Do not force conversation. If the person wants to talk, listen and talk. If they don\u2019t want to talk, don\u2019t.<\/p>\n

Accept the person\u2019s disappointment then move on: <\/strong>If the person dwells on life\u2019s disappointments, acknowledge the disappointment, validate their feelings, and say things like: \u201cI know this is so hard.\u201d Then talk about positive memories.<\/p>\n

Accept the person\u2019s feelings: <\/strong>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 \u201cThere is a large part of you that believes that you do not have\u2026What part of you does believe that you have\u2026\u201d<\/p>\n

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

Do not take anger and resentment personally: <\/strong>Remember the old expression that we take out our frustration on those we trust most.<\/p>\n

Be solution-focused rather than problem-focused: <\/strong>You cannot change the past. But you can <\/em>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.<\/p>\n

Non-Verbal Communication<\/span><\/h4>\n

Non-Verbal Communication is a powerful way of communicating. Sometimes it is difficult for us to listen because the other person isn\u2019t talking; but that doesn\u2019t mean they aren\u2019t 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.<\/p>\n

Active Listening<\/span><\/h4>\n

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\u2019t hear as much as we should is because we aren\u2019t listening fully or actively.<\/em><\/p>\n

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To listen fully means to pay attention to what is being said beneath the words. You listen to not only the \u201cmusic\u201d but to the essence of what is being said.<\/strong> (Peter Senge)<\/div>\n<\/div>\n

To listen actively follow these steps <\/strong><\/p>\n

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  1. Pay Attention<\/strong><\/li>\n<\/ol>\n
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    • Look at the speaker directly.<\/li>\n
    • Put aside distracting thoughts.<\/li>\n
    • Don’t mentally prepare a rebuttal!<\/li>\n
    • Avoid being distracted by environmental factors. For example, side conversations.<\/li>\n
    • “Listen” to the speaker’s\u00a0body language.<\/li>\n<\/ul>\n
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      1. Show That You’re Listening<\/strong><\/li>\n<\/ol>\n
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        • Nod occasionally.<\/li>\n
        • Smile and use other facial expressions.<\/li>\n
        • Note your posture and make sure it is open and inviting. No crossed arms!<\/li>\n
        • Encourage the speaker to continue with small verbal comments like yes, and uh huh.<\/li>\n<\/ul>\n
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          1. Provide Feedback<\/strong><\/li>\n<\/ol>\n
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            • Paraphrase what you have heard by putting it in your own words, and then reflect on what you have heard.<\/li>\n
            • Ask open-ended questions to clarify certain points. \u201cWhat do you mean when you say\u2026” is an example of an open-ended question because it encourages the person to say more. \u201cIs this what you mean\u2026?” is an example of a closed-ended question because the person can simply say \u201cyes\u201d or \u201cno\u201d.<\/li>\n<\/ul>\n

              Note: Sometimes it is appropriate to use a close-ended question and sometimes it isn\u2019t. When you need a precise answer\u2014for example\u2014\u201cWould you like eggs this morning?\u201d then a closed-ended question will work just fine. When it comes to thoughts and feelings open-ended is the right choice.<\/strong><\/p>\n

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              1. Defer Judgment<\/strong><\/li>\n<\/ol>\n
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                • Allow the speaker to finish each point before asking questions.<\/li>\n
                • Don’t interrupt with counter-arguments.<\/li>\n
                • Be patient. Silence is okay.<\/li>\n
                • Accept what the person is saying, however different it may be from what you think.<\/li>\n<\/ul>\n
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                  1. Respect and Validate the Feelings Being Shared<\/strong><\/li>\n<\/ol>\n
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                    • Treat the other person in a way that you think he or she would want to be treated.<\/li>\n<\/ul>\n
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                      1. Use \u201cI\u201d Statements<\/strong><\/li>\n<\/ol>\n
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                        • Try using \u201cI\u201d statements. \u201cI know you didn\u2019t enjoy the dinner tonight; let\u2019s talk about my being late because I know that\u2019s really bothering you.\u201d<\/li>\n
                        • Say things like \u201cI want to help and I need you to tell me how.\u201d<\/li>\n<\/ul>\n

                          What to Say and What Not to Say to a Person with a Life-Limiting Illness<\/strong> 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.<\/p>\n

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                          • I understand how you feel.<\/li>\n
                          • Are you feeling sad?<\/li>\n
                          • Death is a blessing.<\/li>\n
                          • How are you doing with all this?<\/li>\n
                          • You have your whole life ahead of you.<\/li>\n
                          • What can I do for you?<\/li>\n
                          • You\u2019ll feel worse before you feel better.<\/li>\n
                          • I\u2019m here and I want to listen. Please tell me what you are thinking.<\/li>\n
                          • Something good will come of this.<\/li>\n
                          • It isn\u2019t fair is it?<\/li>\n
                          • Be strong!<\/li>\n
                          • Take all the time you need.<\/li>\n<\/ul>\n

                            What to Say\/ What Not to Say<\/strong><\/p>\n

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                            • I understand how you feel. NO!<\/li>\n
                            • Are you feeling sad? YES!<\/li>\n
                            • Death is a blessing. NO!<\/li>\n
                            • How are you doing with all this? YES!<\/li>\n
                            • You have your whole life ahead of you. NO!<\/li>\n
                            • What can I do for you? YES!<\/li>\n
                            • You\u2019ll feel worse before you feel better. NO!<\/li>\n
                            • I\u2019m here and I want to listen. Please tell me what you are thinking. YES!<\/li>\n
                            • Something good will come of this. NO!<\/li>\n
                            • It isn\u2019t fair is it? YES!<\/li>\n
                            • Be strong! NO!<\/li>\n
                            • Take all the time you need. YES!<\/li>\n<\/ul>\n

                              Communicating with people who cannot speak<\/strong><\/p>\n

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                              1. Don\u2019t be afraid to talk. <\/strong>Share things from your life. Read to the person.<\/li>\n
                              2. Look the person in the eyes and smile. <\/strong>Even ask the person to blink once for yes or twice for no.<\/li>\n
                              3. Touch the person.<\/strong> 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.<\/li>\n
                              4. Make cue cards or picture cards <\/strong>to help you understand what the person would like.<\/li>\n
                              5. Use <\/strong>Blissymbolics\u00a0<\/strong>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.<\/li>\n<\/ol>\n

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                                1. Read this scenario<\/strong><\/h5>\n

                                Marie has been seeing Dr. Johnson for several months now. One morning Marie says to you: \u201cI used to think Dr. Johnson was a good doctor but I\u2019m not so sure. He just doesn\u2019t 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\u2019t have a chance to talk to him. He doesn\u2019t have time to talk to me. I don\u2019t even think we should bother going back to see him.\u201d<\/p>\n

                                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.<\/h5>\n

                                Sample response:<\/span><\/h4>\n

                                \u201cI 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.\u201d<\/span><\/p>\n

                                3. What question could you ask to clarify what you have heard? Jot down what you might say before checking the sample answer below.<\/strong><\/h5>\n

                                Sample response:<\/span><\/h4>\n

                                \u201cDo you have specific questions for the doctor?\u201d or \u201cWould it be worth going back to see the doctor if he made more time for you?\u201d<\/span><\/p>\n

                                4. You don\u2019t want to be argumentative but you think Marie should keep seeing the doctor. However, Marie is feeling disrespected by the doctor. You can\u2019t 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.<\/h5>\n

                                Sample response:<\/span><\/h4>\n

                                Advise Marie to write down her questions ahead of time and record the doctor\u2019s answers or offer to ask her questions for her after you discuss them together.<\/span><\/p>\n

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                                Use these additional resources to learn more about the topic of how to communicate.<\/span><\/h4>\n

                                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.<\/p>\n

                                Select the link that applies to the person you are caring for to learn more.<\/p>\n

                                Communicating with the Hearing Impaired <\/strong>
                                \nhttps:\/\/www.chs.ca\/communication-tips-0<\/a><\/p>\n

                                Communicating with the Visually Impaired
                                \n<\/strong>                                https:\/\/www.cnib.ca\/en\/sight-loss-info\/when-someone-you-know-blind?region=on<\/a><\/p>\n

                                Communicating with those who have Speech-Language Disorders
                                \n<\/strong>                                https:\/\/www.osla.on.ca\/en\/ServicesinOntario<\/a><\/p>\n

                                Communicating with those who have Alzheimer\u2019s disease or Dementia
                                \n<\/strong>                                http:\/\/www.alzheimer.ca\/en\/Home\/Living-with-dementia\/Ways-to-communicate<\/a><\/p>\n

                                Blissymbolics Communication International
                                \n<\/strong>                                http:\/\/www.blissymbolics.org\/<\/a><\/p>\n

                                Importance of Communication\u00a0<\/strong><\/p>\n