Improving Communication With the Patient
                                       Communication with the patient can be compromised by several things, and the breakdown can occur on both sides of the conversation.


When the Patient...                                              ...the Caregiver...

                                                     has problems with slurring or garbling of speech        may find it hard to understand but may feel desperate to hold
                                                                                                                                       on to some quality of interaction

                                                     has word-finding difficulties or misuses words           may jump in prematurely to provide a word or finish a sentence
                                                     has short- or long-term memory loss                         may find the repetition tiring and frustrating

                                                     expresses nonsensical or delusional thoughts              may be caught in a cycle of trying to correct the patient and
                                                                                                                                       keep things real

                                                     rambles or speaks with long pauses                           may begin to assume that what the patient is trying to say, in
                                                                                                                                       itself, makes no sense and may decrease the effort to

                                                      decreases interaction                                               may feel an incredible sense of loneliness

                                                      speaks short-temperedly due to frustration                may take it personally due to fatigue and sadness

When the Caregiver...                                          ...the Patient...

                                                       speaks too quickly                                                 may be overwhelmed and may withdraw

                                                       asks multi-pronged questions                                  may be very confused by the choices

                                                       gives too much information                                    may be unable to cognitively process it or may become angry,
                                                                                                                                       frustrated, or fatigued

                                                       becomes frustrated by the slow speed of                 may read the nonverbal reaction and become angry or hurt or
                                                            the conversation                                                   shut down the conversation

                                                       finishes the patient's thoughts                                 may feel misunderstood and may become frustrated; this may
                                                                                                                                       be especially frustrating to those with prior strong verbal skills

                                                       speaks to the patient as one would speak                 may pick up on the insulting tone, even if unintentional
                                                            to a child                                                          

                                                       asks a number of questions in order to                    may feel insulted (if the answers are known) or frustrated (if
                                                            conduct a kind of informal cognitive                       the answers aren't known and yet he or she is aware that
                                                            testing                                                                 the questions are easy)

                                                       talks to the patient too quickly after waking             may not be able to sort out whether the current conversation is
                                                                                                                                      real or a dream

                                                       converses with a lot of background noise                may have a hard time filtering through the distractions and may
                                                            (eg, TV, radio, visitors, young children)                  take longer to reply or may become irritable

                                                       withdraws from efforts at conversation                  may feel lonely and isolated, especially if the primary caregiver
                                                            because they are so exhausting                               is his or her main link to the rest of the world

     Everyone desires to make the most of the hospice period, and good communication can make a big difference in the quality of interactions between patient and caregivers. It can
     comfort the patient, improve the care, and help to leave the family with treasured memories. This section will discuss ways to make the most of the communications you share.

     One of the biggest roadblocks to communication during this period is that the caregiver often communicates as he or she always has with the patient, as if there has been no change.
     But by this time, most patients have indeed undergone many changes, on many levels, even if the physical appearance hasn't altered that much. When the patient is perhaps
     experiencing speech deficits, confusion, fatigue, and personality change, he or she may, in fact, find communication to be exhausting and frustrating. Taking a different approach
     may help, depending on the individual patient and his or her deficits.

     Take the following example. A woman enters the room to see that her husband, the patient, is beginning to rouse from an afternoon nap. The man's speech is still sound, but his
     cognition and memory have been severely affected. Lately, he has been particularly confused by time of day and by questions that require more than a yes/no answer. The house
     has been quiet for hours. The wife has been lonely, puttering around doing light chores very quietly so as not to disturb him, and she is pleased now to see him waking. As he works
     to reposition himself and "lose the cobwebs" of sleep, she approaches him with a big grin.

                         "Well, hello there, Mr. Rip Van Winkle! I've been waiting for you to wake up! Are you hungry? I held off on having lunch,
                         hoping you'd wake up before too long. Barbara from next door stopped by this morning and dropped off a chicken-and-rice
                         dish that smells
delicious. Want some chicken and rice? It's like what your mom used to make sometimes. I put it in the oven
                         to keep it warm because I wasn't sure how long you'd sleep. Do you want to take your pills now or after you eat? Or maybe
                         it would be a good idea to take care of business first. Need to go to the bathroom? Why don't we do that first? I'll take you
                         down to the bathroom, and then I'll get lunch ready. How's that sound?"

     Depending on the patient, the internal processing of all this (in parentheses) might go something like this:

                         (Oh. That's my wife.) "Hi." (Rip Van Winkle? I don't get it. There was a story, I think, about Rip Van Winkle. Or was that...?
                         I don't know. I can't remember. Am I hungry? I don't know. I was having this dream...or is
this a dream? I don't know if
                         I'm even awake. Something about lunch. When did I last eat? What time is it? What
day is it? How long was I asleep? Did I
                         miss a day? Who's Barbara? Oh, wait...Barbara...I used to work with a Barbara, didn't I? Barbara came
here with food? I
                         haven't seen Barbara in a really long time. Why would she bring food here? Barbara knows where we live? Wait a second---
                         her name wasn't Barbara. It was Brenda. So who's this Barbara? Oh, I know. Barbara next door. Barbara and Kenny. Not
                         Kenny. Ronnie. Tommy? What the heck's
wrong with me? I can't remember anybody. Do I want chicken and rice? Do I have
                         to pick one or the other? I know chicken. Chicken is good. I like chicken. that cereal, you mean? That's breakfast,
                         not lunch. Is she asking me if it's time for lunch or breakfast? I don't know. Was Mom here? passed away.
                         It was...I don't remember when...but we were living in Chicago then. I think it was Chicago. Huh? Pills? I don't know.
                         Whatever you give me, I guess. I don't even know what time it is. Do I need to go to the bathroom? I think...I think maybe.
                         How does that
sound? Um....) "OK. Yes." (I hope that was the right answer. Oh, that's a relief---she looks happy. I said the
                         right thing. I must've got it right. Now...oh my...I really,
really have to go to the bathroom!)

     Most of this is internal processing. All the husband says is "Hi" and in reply, after a long delay, "OK. Yes." The wife, who has stood watching him while all of this thought
     took place, is disappointed by the somewhat flat response and isn't sure which question the word "yes" actually answers. She is unaware that so much cognitive work took
     place in order to form this meager reply.

     A better exchange---and more of a true
exchange would be:


                         (Oh. That's my wife.) "H-hi."

                         "Do you need to use the bathroom?"

                         (Do I?) "I...I don't know."

                         "OK. Let me help you to sit up first." After a few minutes of sitting together:  "Want the bathroom now?"



                         Afterward, she situates him in a comfortable place. Now that he is more alert, he feels a little less confused. The wife
                         brings in the chicken-and-rice dish to show him. "Want some? Barbara next door made it for you."

                         (That smells good. It looks good. I like chicken.) "Maybe...maybe a little bit."

                         "Good! I'll be right back." She prepares him a dish and brings in the food, a drink, and the midday pills. "Here you go."
                         Knowing that sometimes lately, her husband has seemed distracted doing two tasks at once---even everyday things
                         like eating and conversing---she decides to take his lead, see how clear he seems at the moment, perhaps ask him if he
                         likes the food, and put off an attempt at genuine conversation until after the meal is done and the pills have been taken.
                         After lunch, he seems more focused, so she leads some light talk, with frequent pauses to benefit his understanding. He
                         initiates little conversation now, but she finds that he will respond to questions. Yes/no questions seem much less confusing
                         than open-ended ones, so she uses these when possible. She decides to get out the photo album and look through it together,
                         in hopes it will stir some memories and elicit some conversation from him. Little prods, such as "Remember this?...Chicago....
                         Linda's wedding....Linda and Frank....Look at you....So handsome" seem to be helpful. Even if he's merely nodding, she sees
                         that the visual prompts and pauses are helpful, and he seems to be enjoying the activity and her nearness and attention toward
                         him. Occasionally, he can answer a more open prompt, and his wife tries to ask questions that she thinks will be easily answered.
                         Soon, he seems fatigued, and she makes him comfortable again.

     For patients who are cognitively sharp but experience deficits in just the delivery of their speech, the approach would, of course, be very different. Some people have had good
     luck with a special product called 50 Helps, a type of board with little pictures representing things most commonly asked for by a patient---things relating to eating, drinking, room
     temperature, bathroom needs, and entertainments such as the TV. Someone crafty and clever in the family may be able to make a similar board or individual picture cards for the
     patient who knows clearly what he or she wants but, due to speech deficits, can't communicate it. The little pictures can also serve as question prompts perhaps.

     A great deal of patience may be required as the patient struggles with stuttering, stammering, slurring, or garbling. Such conversations can be very slow and may require time and
     effort to clarify what is being said. The patient may become very frustrated, especially if already tired, at his or her own inability to communicate. Looks of impatience on the face
     of the caregiver may not go unnoticed, making matters worse. The caregiver will need to find the path that works best for the two of them. Sometimes the patient finds it easier to
     communicate when the caregiver is not making direct eye contact; leaning forward and making eye contact may make the patient feel rushed and flustered. On the other hand,
     some patients may feel that the caregiver isn't fully engaged if he or she is puttering around the room during conversation. The caregiver's movements may, in themselves, be
     distracting to the flow of thought. Figure it out as you go.

     After a good conversational exchange, be aware of the factors that made it work. Is there a certain time of day at which the patient is more alert and tuned in? Was the patient
     more animated when others were around or when there was privacy? Do you tend to lose him or her too long after a meal, when fatigue creeps in again?

     When the patient is delusional or experiencing hallucinations, you will encounter conversations that seem a little wacky sometimes. A recent example, where a woman was in her
     final month or so with gbm:

                              The patient says, "Am I Paul McCartney?"

                              "No," replies the caregiver.

                              "Are you sure there's no chance I could be Paul McCartney?"

                              "Why do you think you might be Paul McCartney?"

                              "Because I keep breaking out in song in my head."

     Another example, from a male gbm patient conversing with his wife:

                              "I saw Hitler around here."

                              "You saw

                              "Hitler. I saw him in the kitchen the hallway. He the hall."

                             "You saw Hitler in the hallway?"

                              "Yes. He was here before too. He's been here before."

     Where does one take
this kind of conversation? Well, as professional caregivers to the elderly and the mentally ill can attest, it is often fruitless to try to reorient the patient toward
     reality. Such conversations can be extremely taxing to both patient and caregiver as the debate spins around and around, and even if results are achieved, they tend to be temporary
     anyway. Rather than spar about reality and fantasy, the best responses to the above examples would be:

     First example:

                              "Sometimes I sing songs in my head too.... Do you know what song you were singing?...
                              Would you like me to put on some music?"

     Second example:

                              "Let me go check." The caregiver could get up, head to the hallway and kitchen, turn on
                              some lights, open a few closet doors in the hall, and then return. "He's definitely not there
                              now. I'll continue to check. If I see anything at all, I'll call the police right away. Don't
                              worry. I've got this one under control."

     In the second example, it's fruitless to get into a discussion about how Hitler died years ago, couldn't possibly be in the house, etc. Much more important than the validity of the
     claim is the underlying
fear, and once that is addressed, the patient may become relaxed. This is not to say that visions of Hitler won't recur---because they might---but the
     caregiver can address them one by one, perhaps escalating the measures taken to "rid the house of Hitler." When the patient is bedbound, a white lie such as "While you were
     napping, I had a security alarm put in" or "I heard on the news that the police arrested Hitler and put him in jail" may help to put the issue to bed.

     A very good friend who lost her 14-year-old son to gbm in England shared some of their conversations during his last few weeks. Word-finding difficulties frustrated this
     extremely intelligent boy and made his status all too clear to his parents. My friend worded it this way, and I think that so many of us can relate: "If it weren't so &^$*% sad,
     it would be fascinating."

     As possible, remove obstacles to good communication:

                              background noise
                              bad timing
                              complicated wording

     Through patience and receptive body language, communicate your respect for the patient's dignity. At those times when communication hits a road block that can't be surmounted,
     you may have to choose between a generic response such as a nod of the head, "Oh, I know," or "Gosh, I'm not sure" or a heartfelt "I wish I could understand. I'm trying. I know
     this is frustrating for you. I'm so sorry I can't seem to get this."

     Don't forget that nonverbal communication is often more easily understood. Many cancer patients have expressed an emotional pain due to lack of touch by those they love---aside
     from the touch of active caregiving, that is. Warm eye contact, a squeeze of the shoulder as you pass through the room, holding hands as you watch TV together, a gentle bear hug,
     brushing the patient's hair, or a kiss from a grandchild can communicate where words often fail us. There is so much to be said, by both parties, but the most important message is
     always that of love.