Speech and Language Therapy; Dysphagia and End of Life Care
End of Life Care;
In the last few days of life a person will often lose interest in oral intake. Comfort is the priority providing sips of water if tolerated.
A speech and language therapy assessment of risk is not appropriate, as the focus is on comfort if diet and fluid modification alleviates symptoms these should be promptly prescribed without the delay of referring to speech and language therapy.
Often very easy foods such as jelly, ice cream, yoghurts or mousse provide some comfort.
If fluids are causing coughing thickening fluids to a Stage 1 (2 scoops Resource Thicken Clear per 200mls) can prevent the discomfort of coughing. These recommendations are included in the trust end of life care plan ‘Getting It Right For Me’;
GP’s PLEASE PRESCRIBE:125g Tubs Resource Thicken Up Clear. PIP Code: 355 - 4433
(Aylesbury Vale Clinical Commissioning Group advisory: “Resource Thicken-Up Clear is now the first choice thickener in Buckinghamshire”.)
Taste and touch are equally important at the end of life as at the beginning. If oral hygiene is neglected, the mouth rapidly becomes dry and sore which will impact on nutrition and hydration. The resulting build-up of bacteria in the mouth will also increase the risk of mouth and chest infections. Oral care should be provided at least four times daily to gently remove coatings, debris and plaque from teeth, gums and soft tissues using a small headed soft toothbrush (a child’s brush may be useful) and a small amount of mild mint tasting toothpaste. Some patients may need more frequent care. Mouth care can be carried out by family members, giving them greater involvement in the care of their relative.
Carry out mouth care as often as necessary to maintain a clean mouth, in addition:-
- In people who are conscious,the mouth can be moistened every 30minutes with water from a water spray or dropper, or ice chips can be placed in the mouth.
- In unconscious people,moisten the mouth at least once an hour with water from a water spray, dropper, or sponge stick (ensuring the head is intact) or ice chips placed in the mouth.
- To prevent cracking of the lips,smear petroleum jelly (for example Vaseline®) on the lips. However, if a person is on oxygen apply a water-soluble lubricant (for example K-Y Jelly®).
- When the weather is dry and hot,if possible, use a room humidifier or air conditioning.
Basis for recommendation (NICE Clinical Knowledge Summaries)
These recommendations are based on palliative care textbooks and local guidelines written by experts on the basis of experience of clinical practice [Fife Area Drug & Therapeutics Committee, 2004;Lothian Palliative Care Guidelines Group, 2004;Pan-Glasgow Palliative Care Algorithm Group, 2005;WeMeReC, 2006;De Conno et al, 2010;Regnard and Dean, 2010].
Also expert opinion [Ellershaw et al, 1995;Twycross et al, 2009].
Advancing Dementia;
Patients with advanced dementia frequently develop oral feeding problems, eating difficulties or an indifference to food, leading to a reduction in nutritional intake, weight loss and an increased risk of aspiration. This is often a late event, associated with the final phase of the illness when it is not possible not understand the patient’s wishes.
The Alzheimer’s society has stated that ‘the quality of life rather than length of life should be prioritised.’
From: Oral Feeding Difficulties and Dilemmas; A Guide to Practical Care, particularly towards the end of life. Royal College of Physicians 2010
This document goes on to discuss the lack of evidence to support the idea that PEG feeding (where a feeding tube is inserted into the stomach) improves the quality of life, improves nutritional parameters or prolongs the life of someone with severe dementia. Tube feeding also carries a significant number of risks to health and may take away the pleasure/enjoyment of eating and the important 1:1 social interaction a carer or family member provides when supporting someone with eating and drinking.
Where-ever possible oral intake should be continued. This may mean that oral intake continues despite an element of risk. This means that as professionals we have done everything possible to make the patient as safe as possible by following their feeding plan, but in order for that person to continue to enjoy oral intake there is an element of risk.
If a resident has been generally deteriorating and their eating and drinking has gradually been deteriorating it may be better to talk to the GP who may wish to discuss with family that there is a high possibility that the person may develop a chest infection and to make some decisions about levels of treatment appropriate, including whether admission to hospital would be appropriate. Alternatively dignity and comfort during end of life care may be appropriate.
It should be noted that this is not applicable to residents presenting with delirium which is an acute confusional state associated with a medical condition which is often treatable and it is usual in these circumstances for there to be a sudden and significant deterioration in a patients function. In this situation it is often more appropriate to consider hospitalisation and intravenous fluids while treatment is carried out. Very commonly this is caused by a urinary tract infection.
This is a difficult and challenging area and worth reading about in the document quoted from the Royal College of Physicians.
The key points to take away are;
-swallowing difficulties are often part of the natural progression of dementia and often signify the latter stages of dementia
-the priority is to preserve the patients dignity and quality of life as much as possible
-this includes following feeding guidelines to make eating and drinking as safe as possible but there may still be an element of risk
-wherever possible be proactive and encourage discussion and decision making prior to an urgent or emergency situation
Often in a patient’s last days there will be complete loss of interest in eating or drinking, they may be too drowsy to eat and drink. Efforts should be made to keep the person comfortable and regular mouth-care is recommended.
It is not appropriate at the stage to refer the patient for a Speech and Language therapy assessment.
Contact Details for further advice;
Speech and Language Therapy DeptSpeech and Language Therapy Dept
Amersham Hospital Stoke Mandeville Hospital
Whielden StreetMandeville Road
AmershamAylesbury
HP7 0JDHP21 8AL
Tel: 01494 734415Tel: 01296 315247