Important issues related to end of life decisions ideally should be explored before cognitive problems progress. In reality, the triggers for these important discussions often come later in the disease progression when the person may no longer have mental capacity to consider the issues involved. Rarely have people made a formal expression of what their end of life wishes are prior to the onset of signi fi cant cogni- tive problems.
Table 3.5 Signs of pain in people with cognitive or communication impairment
Type Description
Autonomic changes Pallor, sweating, tachypnea, altered breathing patterns, tachycardia, hypertension
Facial expressions Grimacing, wincing, frowning, rapid blinking, brow raising, brow lowering, cheek raising, eyelid tightening, nose wrinkling, lip corner pulling, chin raising, lip puckering
Body movements Altered gait, pacing, rocking, hand wringing, repetitive movements, increased tone, guarding, a bracing b
Verbalizations Sighing, grunting, groaning, moaning, screaming, calling out, aggressive/ offensive speech
Interpersonal interactions Aggression, withdrawal, resisting
Activity patterns Wandering, altered sleep, altered rest patterns Mental status changes Confusion, crying, distress, irritability RCP (2007), Royal College of Physicians
a Guarding = “abnormal stiff, rigid, or interrupted movement while changing position”
b Bracing = a stationary position in which a fully extended limb maintains and supports an abnormal weight distribution for at least 3 s
Piecing together a picture of that person’s values and beliefs through discussion with those close to them can help us to inform best interest decisions.
He was a very proud and private man. He wouldn’t like the idea of being messed around with, he would hate the indignity of it all. (Daughter of patient with advanced Huntington’s disease)
She’s always been a fi ghter. She never wanted to let MS beat her. I think she still enjoys life, but it’s much harder now. She hardly ever gets out now and none of her old friends visit.
(Sister of patient with MS)
An understanding of how the condition has progressed and how life has changed for that person and of their pleasure in life can help best interest decisions to be taken.
The involvement of patients with cognitive problems in advance care planning is important. This will be limited to imparting information rather than involvement in the complex decisions. Complicated concepts and questions may cause bewilder- ment, insecurity, and distress for the cognitively impaired patient. The use of care- fully planned communication skills to inform the patient of what is happening to them may reduce distress and aid coping.
Conclusion
In the more advanced stages of neurological disease, patients often become more aware that nothing will alter the course of the disease. When neurological disease advances and disability increases, access to specialist clinical care can become more dif fi cult. Some clinicians readily identify their own feelings of powerlessness to know how to help, but those of us who are privileged to work routinely with these people will instinctively recognize the individual behind the disease. With all the potential problems of speech dif fi culties and even in progressive cognitive change, people have a real human need to communicate, to express themselves. The essence of good communication in neurological disease is to seek out and communicate, somehow, with the person behind their disease.
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51 D. Oliver (ed.), End of Life Care in Neurological Disease,
DOI 10.1007/978-0-85729-682-5_4, © Springer-Verlag London 2013
Abstract Physical symptoms are a common problem in all progressive neurologi- cal conditions and can occur at any stage of disease. These symptoms are optimally treated through a combination of careful patient-centered assessment, timely inter- vention, open and honest discussion, realistic goal setting, planning ahead, coordi- nation of care, and regular review of patient and carer.
This chapter will consider the wider context for treating physical symptoms, the principles for their assessment, and the role of the management of the underlying neurological condition. Speci fi c symptoms will be discussed in terms of their preva- lence, mechanisms, and treatments. These will be explored under the headings:
1. Physical symptoms which are common to a number of neurological conditions (e.g., breathlessness, pain, sleep disorders)
2. The management of symptoms which are speci fi c to particular neurological conditions
The neurological diseases discussed in this chapter are multiple sclerosis (MS), Parkinson’s disease (PD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), motor neuron disease (MND), Huntington’s disease (HD), and stroke disease.
Keywords Assessment • Symptom • Neurological • Multidisciplinary • Patient factors
M. Lee , MBChB, MRCP, M.D.
Department of Palliative Care , St. Benedict’s Hospice & City Hospitals , Newcastle Road , Sunderland, Tyne and Wear SR5 1NB , UK
e-mail: [email protected]
Physical Symptoms in Neurological Conditions
Mark Lee
Case Study
Mr. A was a 70-year gentleman who was referred from neurology to the pal- liative care outpatient clinic with a 14-year history of Parkinson’s disease. In those years, he was treated with procyclidine (antimuscarinic), selegiline/
rasagiline (monoamine oxidase B inhibitor), bromocriptine/cabergoline (dop- amine agonists), co-beneldopa (levodopa), and entacapone (catechol-O-meth- yltransferase inhibitor). Under the care of the neurology team, his drug regime had settled to Madopar fi ve tablets a day, Sinemet CR 125 mg at night, and selegiline once daily. Over the 14 years, he had developed complications of dopaminergic therapy becoming increasingly immobile and increasingly dependent on his wife for his activities of daily living.
He had always been an active man who enjoyed writing, drawing, and playing the piano. However, the progression of his disease had severely affected his ability to do these and had understandably become a source of frustration. He was bradykinetic, tremulous, and had dif fi culty speaking.
He remained under neurology review. He also had continued input from physiotherapists, occupational therapists, and speech and language therapists (SALT).
He had developed nocturia and bladder spasm over the last few years. In the last year, he had had multiple admissions to hospital. Initially, his symp- toms were attributed to out fl ow obstruction and settled following a transure- thral resection of prostate (TURP) and later by insertion of a suprapubic catheter. He developed further bladder spasms which were controlled in part with antimuscarinic drugs, but there also seemed to be relief provided on occasions by dispersible Madopar. As the pain became more resistant to these treatments, he found bene fi t with low-dose opioids (immediate-release mor- phine). His chronic constipation was controlled with oral laxatives although enemas were sometimes required.
Mr. A also had problems with drooling and often had to change his shirts.
There were no obvious reversible factors causing the drooling, so he was com- menced on a hyoscine hydrobromide patch every 3 days. This was only partially effective, so he was switched to glycopyrronium solution with good effect.
His speech and swallowing continued to deteriorate over the next 12 months. He was also showing signs of cognitive impairment. His speech was dif fi cult to understand, he had poor oral intake, his weight was dropping, and he was becoming increasingly immobile. After multidisciplinary discussion involving SALT, dietitian, gastroenterologist, neurologist, him, and his wife, a percutaneous endoscopic gastrostomy (PEG) was inserted, and following a prolonged admission to hospital, he was discharged to a care home in order to optimally meet his nursing needs.
He then suffered recurrent urinary tract and chest infections, all of which worsened his condition. These were treated after discussion with his family and provided good symptomatic relief. Wider discussions about his