By Daryl Leung FRCP,
Consultant Physician on the Acute Medical Ward for Dementia.
Clinical Director of the Elderly Care Department, New Cross Hospital Wolverhampton.
Dementia and delirium taken together account for a significant proportion of the work within busy district general hospitals. Accident and Emergency Departments, Medical Assessment Units and both Medical and Surgical wards are a rich tapestry of such combined complex socio-pathological interplay.
Pain is defined and accepted as whatever the patient says it is. But what if the patient has expressive language problems, delirium and / or short-term memory issues? The commonly used phrase from the bottom of the bed, “Are you in any pain Mrs Smith?” may go unheard, literally falling on deaf ears. Misunderstood, and incorrectly interpreted, it may as a consequence precipitate behaviour that then defines our patient as aggressive, challenging, physically violent, scratching, pinching, kicking, noisy, disruptive to other patients and a downright nuisance.
Freedom from physical pain, if not emotional pain, is the right of every individual in the acute hospital setting. We may not be able to alleviate the emotional pain of a diagnosis of cancer or terminal illness, but we can control and often eradicate the physical type if we have the right knowledge, understanding, empathy and motivation. Lack of ability and concern to diagnose physical pain in patients with dementia and or delirium is a national scandal within the national health system.
A Tragedy of Misinterpretation?
Patients with dementia and delirium may display a plethora of uncharacteristic behavioural responses to sustained pain. Pain may result in disruptive and challenging behaviour, which can stigmatise vulnerable individuals further to become even more at risk of discriminatory care and subsequent sedation with neuroleptic medication, and consequently increased morbidity and mortality.
One of the first principles and duties of a good physician and nurse is to alleviate pain and suffering. How can this be done when there is such poor awareness and lack of understanding of pain assessment in this special patient group? The elderly and frail with dementia and / or delirium represent one of the largest cohorts of patients looked after in the system. Wandering, pacing, shouting, singing, displaying repetitive behaviour, banging the bed rails and table; whilst these behaviours tend to be recognised and often labelled and linked to mental health problems they may also be a consequence of undiagnosed pain, suffering and under-treatment of pain.
Limitations of the Analgesic Ladder
The simple rule of the pharmacological analgesic ladder in these patients cannot be applied. The ladder to all medical and nursing students says use simple analgesia first, for example paracetamol. If this fails to succeed, the ladder is escalated to nonsteroidal anti-inflammatories like Ibuprofen, changing if necessary to weak then more potent opioids. Not forgetting to use additional agents to counteract side effects. Laxatives, for example, may be required to counteract constipation from morphine.
Life is not so simple, and the majority of these preparations are used on an “as requested by the patient” part of the hospital prescription chart. Can it be imagined, really and honestly, that Mrs Smith with Alzheimer’s Disease and suffering from back and rib pain from a fall will ask regularly every six hours on the dot for her pain killers? What will really happen is that nobody will recognise she has a fractured rib because she can’t explain herself how much it hurts, neither will she understand how to get tablets from the nurse on the ward. The doctor will only have prescribed paracetamol on the “as requested” part of the drug chart, if at all. Therefore nurse won’t give it regularly. The patient will be unrecognisable to her family when they come to visit, because she is not herself, more confused, hallucinating and becoming dehydrated. All of these problems are commonly a direct consequence of poor pain assessment and recognition. Unrecognised or poorly assessed physical pain results in inappropriate – often unwittingly inhumane – treatment.
A Controversial Suggestion?
The answer is quite straight forward to me. Every patient admitted to hospital with dementia and or delirium should be routinely prescribed regular paracetamol. It should be six hourly on their drug chart – provided there are no contraindications. If the patient has difficulty swallowing then a liquid or suspension should be prescribed. A low dose sustained release morphine patch may be used if there is no ability to swallow or there are compliance issues – provided there are no obvious contraindications. This prevents the patient having to remember to ask for it. In addition it prevents the nurse or doctor from wrongly assessing patients as pain-free and allows the patient to say no if they don’t wish to take the tablets. There must also be a better understanding and awareness of how to assess the patient for pain non-verbally. This insight seems to be inbred in the training and understanding of veterinarians but unfortunately not in human medicine or the acute hospital system.
Some type of “About Me” document asking family and carers about how they know when their loved one is in pain will be of value to hospital staff. Diagrammatic smiley and sad faces shown to patients with confusion, moderate dementia and delirium, asking them to rate their pain, in my view are useless. Many patients with dementia and delirium have visuospatial problems and no longer recognise shapes on paper!
This policy has proved helpful on the Acute Medical Ward for Dementia at the New Cross Hospital to improve the quality of care for patients. We are about to introduce the approach suggested here to the rest of the hospital, through our Dementia Outreach Team. I urge you to consider how your organisation can address this issue. Paracetamol is cheap and effective with few side effects. The potential benefits are obvious in my opinion.
This scheme could be adopted nationally. In my view it could be part of a new and better type of understanding and care for this group of patients.
Note: Cachexia, low body weight <50kg, liver disease and enzyme inducing medication all contribute to paracetamol hepatotoxicity. The dose in such individuals should therefore be reduced accordingly.
- Morrison, RS. [and] Siu, AL. (2000). A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. Journal of Pain and Symptom Management, April 2000, Vol.19(4), pp.240-8.
- Banerjee, S. (2009). Report on the prescribing of anti-psychotic drugs to people with dementia: time for action. London: Department of Health, 2009.
- Husebo, BS. Ballard, C. [and] Sandvik, R. [et al] (2011). Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. BMJ, July 17th 2011; 343: d4065.
- Abbey, J. De Bellis, A. Piller, N. [et al]. The Abbey Pain Scale. Funded by the JH & JD Gunn Medical Research Foundation 1998-2002.
Local Research Broadly Supportive of this Article
A conference poster presentation, produced at the American Geriatric Society Conference (Arizona) in October 2012, indicated potentially significant differences in the amount of analgesia prescribed between patients who had been prescribed neuroleptic and sedative medications compared with those who had not.
Fernando, U. Leung, D. Jay, E. [and] Winter, R. (2012). Neuroleptic, sedative and analgesic prescription in dementia patients admitted into acute hospital. Poster presentation, given at the American Geriatric Society’s 24th Annual Fall Symposium; “The New Era of Alzheimer’s Disease: Best Practices from Prevention to Diagnosis and Care”, held in Chandler, Arizona, between October 25th – 27th 2012. Wolverhampton: Royal Wolverhampton NHS Trust, October 2012.
OUCH!: Observe, Understand, Communicate and Help
Timed to coincide with the 2018 Dementia Action Week, dementia experts at Royal Wolverhampton NHS Trust launched a local “OUCH! Campaign” to raise awareness and recognition of untreated pain in dementia patients. The “OUCH!” abbreviation / mnemonic encourages staff to Observe, Understand, Communicate and Help people with dementia experiencing pain.