Recognition and further discussion among the team – patient (if possible), family and close carers, and the wider multidisciplinary team – may then allow the man- agement plan to consider the possibility that this person may be deteriorating and coming to the end of life. In this way, the care provided can be more appropriate and advance care planning and preparation for the end of life may start – as described in later chapters.
33 D. Oliver (ed.), End of Life Care in Neurological Disease,
DOI 10.1007/978-0-85729-682-5_3, © Springer-Verlag London 2013
Abstract Communication between the patient and professional as equals is essential in supporting people with progressive neurological conditions. The out- come of good communication in end of life care is to return a sense of control to the person. It can increase the person’s understanding of what may happen as their dis- ease progresses and empower them to make important choices for their future care.
Supporting effective communication in end of life care for people with neurological disease is challenging, but there are common themes in doing this well. Involvement of speech and language therapy services is important for assessment of speech prob- lems and planning communication support.
This chapter describes the physical and cognitive problems which can compound communication dif fi culties in neurological diseases. Strategies to support effective communication in these situations are offered, particularly for giving the initial diagnosis of the disease and understanding and assessing signs of distress in individ- uals with cognitive impairment, and the anticipation and early recognition of com- munication problems are identi fi ed as triggers for future care planning. Sensitively exploring the person’s end of life wishes is one area in which good communication is central to returning control. These important discussions can enable the individual to determine where and how they would like to be treated as their disease progresses.
The essence of good communication in neurological disease is to fi rstly focus on the person, not the disease, and to promote individual choice and control.
Keywords Communication • Cognition • Speech • Diagnosis • Questions
• Capacity
J. Smith , B.Sc., (Hons), MBChB MRCP (*)
Specialty Registrar in Palliative Medicine, St. Gemma’s Hospice , 329 Harrogate Road, Moortown , Leeds, Yorkshire , LS17 6QD , UK e-mail: [email protected]
D. Adams , RN, BA (Hons)
Clinical Nurse Specialist in Palliative Neurology, St. Catherine’s Hospice , Throxenby Lane , Scarborough, North Yorkshire , UK
C. W. Campbell , MBChB, FRCGP, FRCP
Medical Director and Palliative Medicine Consultant, St. Catherine’s Hospice , Throxenby Lane , Scarborough, North Yorkshire , UK
Communication
Jenny Smith, Debi Adams, and Colin W. Campbell
Harry’s Story
Harry was in the advanced stages of multiple system atrophy. His speech was incomprehensible to most people. Some words could be guessed correctly with much repeating. Despite his great dif fi culty speaking, Harry seemed able to communicate so much with his eyes and wide smile. He could let you know that you understood him or even just that he was pleased to be with you and hear some gossip. His wife, Ann, was able to understand more than most what he was saying, but now, even she struggled to understand him. Earlier in his disease, Harry had been quick at using his communication boards, but increased weakness meant that even these simple aids were proving dif fi cult to use. He was becoming weaker quickly and was now struggling to eat any- thing, managing only a couple of spoonfuls of his supplement puddings at a time, and drinking very little.
One year before, Harry had a severe chest infection due to aspiration and was admitted to hospital. He was more able to speak in those days, and when he returned home, he let his GP know that he did not want to be taken into hospital again. He said he felt “lost” in hospital and he felt he did not want to be “kept alive.” Harry met with a specialist palliative care nurse and consul- tant, and his future wishes were explored. Harry knew his swallowing re fl ex was failing and he was losing weight. He stated very clearly that he did not want to have a feeding tube and did not ever want to go to hospital again.
While he knew his wife would need help, he wanted to stay at home.
Ann was terribly worried. She knew Harry was dying, but she was con- cerned that he was suffering in hunger, in thirst, and in pain. Ann phoned the specialist nurse who visited that day. Harry was in bed and unable to move at all. Ann was distressed. “He hasn’t eaten or drunk anything today…I can’t bear not to be able to help him.” Ann had been sitting for hours with Harry, trying to get him to take some food. She was exhausted. “Anything I put in his mouth just falls out.” Ann explained that Harry had been manag- ing to blink once for “yes” and twice for “no” but that today even this seemed too much effort for him. The nurse said she would like to try and talk with Harry to fi nd out how he was feeling and what he wanted. Harry’s fi ngers were fi xed into fi sts, and the nurse puts two of her fi ngers into the center of his right fi st.
Nurse: “Harry, I would like to try and understand if there is anything you want to tell us.
I wonder if you can squeeze my fi ngers?”
Harry: Slowly, Harry squeezed the nurse’s fi ngers.
Nurse: “Can you squeeze my fi ngers once for ‘yes’?”
Harry: one squeeze
Nurse: “Now can you try and squeeze twice that can be for ‘no’?”
Harry: two squeezes
Nurse: “Harry, I understand that you are weaker and that eating and drinking are very dif fi cult. It seems that your condition has progressed considerably, and I’m sorry that you may not recover. Do you understand what I am saying? Can you squeeze my fi ngers once for ‘yes’ and twice for ‘no’ if you understand?”
Harry: one squeeze
Nurse: “I know you have said before that if you became unwell, you would not want to go to hospital. You also said that you would not want treatment to prolong your life anyway. Can you let me know if this is still how you feel? Can you squeeze my hand once for ‘yes’ and twice for ‘no’?”
Harry: one squeeze
Nurse: “I understand you feel some distress. Are you hungry?”
Harry: two squeezes
Nurse: “Are you feeling thirsty?”
Harry: one squeeze
Nurse: “There are some things we can do to help relieve your thirst, maybe some moist- ened sponges around your mouth and a saliva replacement mouth spray. Would you like to try these?”
Harry: one squeeze
Ann becomes concerned that he should receive fl uids by tube feeding as he is getting dehydrated. The nurse explains that the need for fl uid may decrease as the person deteriorates and the aim would be to provide comfort by using sprays of water or sponges to keep his mouth moist. Harry goes on to com- municate that the main distress he feels is from pain caused by signi fi cant stiffness throughout his body. He agrees to have midazolam in a syringe driver to relieve the pain of stiffness. Harry lets Ann know that he is not worried or frightened about anything and she shouldn’t worry about him.
Two days later, Harry died peacefully in his own bed. Ann said, “He just seemed to gradually drift off into a deeper and deeper sleep, and in the end, he just didn’t wake up. I feel so lost without him, but I’m glad for his sake, it is all over.”
Introduction
I stiffened my body and put my left foot out again, for the third time. I drew one side of the letter. I drew half the other side…I set my teeth so hard that I nearly pierced my lip. But – I drew it – the letter “A”…shaky, with awkward wobbly sides and a very uneven centre line…
I had done it! I had started – the thing that was to give my mind its chance of expressing itself…my road to a new world, my key to mental freedom [ 1 ] .
The above quote from the poet and author Christy Brown, using his toes to write, illustrates how even a simple technique can be a powerful tool in communication and an opportunity for personal expression. Despite profound changes in the quality of speech, there are a range of methods and strategies that can enable patients to communicate.
When talking about end of life care with people who have neurological condi- tions, the focus must fi rstly be on the person rather than the disease itself. It is a priority to gain understanding of the individual’s personality, worries, and wishes.
“In the absence of a curative treatment, it is the individual rather than the disease that must be cared for.” [ 2 ]
There are signi fi cant communication challenges as a result of the physical and cognitive impairments of neurological conditions. However, a wide range of approaches, techniques, and strategies can assist in supporting individual choice, gaining understanding, and building relationships.