This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the ‘High’ and ‘Severe’ descriptors in the Nutrition domain to help you assess your or your relative’s “level of need” in this important domain.
Don’t miss Parts one, two, three and four of this series:
Get Help Breaking Down The Decision Support Tool: An Overview
Get Help Breaking Down the Decision Support Tool: Breathing Part 1
Get Help Breaking Down the Decision Support Tool: Breathing Part 2
Get Help Breaking Down the Decision Support Tool: Nutrition Part 1
As we considered in Part 1, the assessed levels of need in the Nutrition domain range from ‘No Needs’ to ‘Severe’. Unlike the Breathing domain, Nutrition does not have a descriptor for a ‘Priority’ level of need. The vast majority of people being assessed for CHC will fall into the descriptors for a ‘Low’, ‘Moderate’ or ‘High’ level of need. It is somewhat unusual for an individual with a ‘Severe’ level of need in this domain to receive care in the community, unless they are nearing the end of their life, due to the risks and complications arising from this type of care.
As we will see, the descriptors for a ‘High’ and ‘Severe’ level of need in this domain often interact with other domains, such as Mobility (positioning), Cognition (loss of feeding mechanics/recognition), Psychological & Emotional Needs (eating disorders), Skin (malnutrition impacting skin integrity, use of cannulae), Continence (lack of adequate hydration/UTI and/or constipation), Breathing (dysphagia/risk of aspiration), Drug Therapies & Medications (palliative care/anticipatory medications). In this way, problems in the Nutrition domain can often result in increased complexity of need, due to the interaction between two or more domains. Any interrelation between domains (complexity), and its potential impact on the delivery of care (intensity/unpredictability), should be considered in the analysis of the four Key Characteristics.
The following clinical factors are relevant to the assessment of a ‘High’ or ‘Severe’ level of need in this domain:
- Can the person feed themselves independently?
- Are all nutritional/hydrational requirements met, or do they need supplementary feeding?
- Are they under the care of the Dietician? How often do they visit?
- Can the person eat normal consistency food, or do they require liquidised meals?
- Does the person require prompts, encouragement and/or assistance to take sufficient food/fluids?
- Does the person require full assistance with feeding? Does this take a long time, i.e. over 30 minutes?
- Any special dietary requirements, intolerances or allergies?
- Weight chart, BMI measurements, MUST (Malnutrition Universal Screening Tool) scores.
- Are nutritional needs met via PEG (percutaneous endoscopic gastronomy) or RIG (radiologically inserted gastronomy)? If so, is this problematic to manage?
- Is there a diagnosis of dysphagia/risk of aspiration? If so, are there any recorded episodes of choking?
- Is the person under the care of SaLT (Speech & Language Therapy)?
- Does the person require a modified consistency diet (soft/mashed/puree/liquid) and/or thickened fluids?
- Is skilled intervention required to maintain an airway, e.g. suctioning?
- Is there evidence of a diagnosed eating disorder (anorexia, bulimia, BID, OFSED, ARFID)?
- Does the individual require subcutaneous or intravenous fluids?
- Does the individual require total parenteral nutrition (TPN)?
- Is the person receiving palliative (end of life) care?
IMPORTANT – The Decision Support Tool provides the following guidance to the MDT when assessing needs in this domain: Individuals at risk of malnutrition, dehydration and/or aspiration should either have an existing assessment of these needs or have had one carried out as part of the assessment process with any management and risk factors supported by a management plan. Where an individual has significant weight loss or gain, professional judgement should be used to consider what the trajectory of weight loss or gain is telling us about the individual’s nutritional status.
This underlines the importance of having clear, dated evidence to confirm any symptoms of weight loss, swallowing difficulties and/or risk of aspiration/malnutrition/dehydration, as the CCG may interpret a lack of this type of documentation as evidence of an absence of need. This is particularly important for those receiving care at home, where record keeping is often less robust.
Now that we’ve outlined the type of things the MDT will be considering in this domain, let’s take a look at the descriptors for the levels of need. For each descriptor, we provide a case study to give you a better understanding of how the levels of need might be applied at your or your relative’s assessment.
HIGH
| Dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.
OR Subcutaneous fluids that are managed by the individual or specifically trained carers or care workers. OR Nutritional status “at risk” and may be associated with unintended, significant weight loss. OR Significant weight loss or gain due to identified eating disorder. OR Problems relating to a feeding device (for example PEG) that require skilled assessment and review. |
| Key Factors
Swallowing problems/choking episodes/risk of aspiration Weight loss, low BMI, nutritionally at risk Diagnosis of an eating disorder Problematic feeding device – PEG or RIG |
CASE STUDY 1 – HIGH
Mrs. X is under the care of Speech and Language Therapy to periodically assess and review her swallow. She is noted to have moderate oropharyngeal dysphagia and is assessed by SaLT as being at a high risk of aspiration. She has a delayed swallow and a tendency to pocket food in her mouth. Mrs. X also requires the input of the dietician to ensure she is getting the right nutrients.
Mrs. X has a recent history of chest infections and was admitted to hospital for treatment of aspiration pneumonia in January of this year. She remains at very high risk of further infection.
Mrs. X has frontotemporal dementia (also known as Pick’s disease). Mrs. X has the variant that includes FTD associated with motor neurone disease, which impacts on her muscles. This causes poor muscle control and poor swallow. In 2016, when the condition took rapid hold, she was unable to eat and drink at all. Mrs. X has an advanced directive confirming she does not wish to be fitted with a PEG.
Mrs. X requires a pureed diet and stage 3 thickened fluids. Despite these adjustments, Mrs. X continues to cough and choke on food and fluids. This occurs 2-3 times a week. In the event of choking, staff are required to clear the airway manually and to assist Mrs. X to cough. Suctioning has been required on two occasions since admission to the home, as Mrs. X was unable to clear her airway with maximum staff assistance.
Mrs. X is unable to feed herself. Carers need to feed her food and fluids from a spoon or syringe. She is unable to tolerate the use of a beaker. It is difficult to coax Mrs. X to open her mouth for feeds at times. She clamps her mouth shut and requires lots of encouragement. Feeding is time consuming, and usually takes 40-60 minutes per meal, 3 times daily with a carer on a 1:1 basis. Mrs. X needs thickened fluids to be given on a spoon throughout the day on a 1:1 basis by a carer.
Due to poor cognition and communication, Mrs. X is unable to indicate her requirements for food or fluids. Carers need to monitor and record her intake. Carers need to identify foods that make her cough and to eliminate these from her diet. Mrs. X is not mobile and needs to be hoisted by 2 carers into a chair for meals to ensure she is in an upright position to minimise the risk of aspiration. After meals she needs to be hoisted back to chair or bed by 2 carers. She is not able to assist with these transfers. Due to the impact of Pick’s Disease on her muscles, Mrs. X is often ‘floppy’ and her head drops forwards, requiring the carer to support her head whilst feeding. She is floppy mostly on the right-hand side and needs lateral support to her trunk to keep her in an upright position for feeding (see Mobility domain).
Mrs. X presents with a ‘HIGH’ level of need as she suffers from dysphagia requiring skilled intervention to ensure adequate nutrition/hydration and minimise the risk of choking and aspiration to maintain airway.
CASE STUDY 2 – HIGH
Mr. X is severely cognitively impaired and requires full assistance to eat and drink. He does not suffer any difficulties swallowing but does struggle to take adequate fluids. Mr. X is extremely resistant to prompts and often reacts angrily when staff attempt to encourage him to drink throughout the day. He will push their hands away and throw the beaker if he is able to grab it.
Mr. X has a history of recurrent urinary tract infections and urosepsis, exacerbated by lack of adequate fluids, and has required three recent admissions to hospital with dehydration. On each occasion he has required rehydration with intravenous fluids.
In an attempt to better manage Mr. X’s condition, and prevent further admission to hospital, fluids are administered via subcutaneous infusion twice a week. A butterfly cannula is inserted into Mr. X’s thigh and 2 litres of fluids are administered over a 24-hour period. Mr. X is nursed in bed on these days and tolerates the process very well. He does not appear to be bothered by the cannula and does not attempt to interfere with the equipment.
Mr. X presents with a ‘HIGH’ level of need as he requires subcutaneous fluids that are managed by the individual or specifically trained carers or care workers.
CASE STUDY 3 – HIGH
Weight Record – 2020
January – 68.6kg
February – 65.9kg
March – 63.6kg
April – 62.2kg
June – 60.9kg
July – 59.2kg
Mrs. X has lost almost 10kg since her admission to the home in January and has a BMI of 17. Her family indicated that she was always a fit lady and did not carry excess weight. She was very particular about her dietary intake and was a vegan. Mrs. X is now vegetarian as the home is unable to cater for her dietary preferences, which is disappointing.
The care home records do not indicate a varied diet and consist of processed foods such as vegetarian burgers and sausages. Mrs. X states that she does not enjoy the food and believes it to be unhealthy. She indicated at a recent care plan review that she was fed up with omelettes, which she is served 3-4 times a week.
Care records indicate that weight loss is due to energy loss/ataxia. However, it seems likely that Mrs. X’s weight loss is partially explained by a lack of appropriate, tasty food options.
Mrs. X is under the care of the Dietician who has prescribed Fresubin supplements twice daily. Despite this intervention, she continues to lose weight, although the rate of this has slowed in recent months.
Mrs. X eats a normal consistency diet, but needs her food cutting up, with a plate guard, due to loss of dexterity. She would benefit from adaptive cutlery (right angled) to maintain her dignity when eating. This may also have the effect of increasing intake, as Mrs. X feels embarrassed eating in front of others as she sometimes spills her food.
Mrs. X was observed to be eating with her hands at lunch time as she was unable to coordinate the spoon and food. Mrs. X is a very proud lady, and this loss of dignity and independence is difficult for her and may well be affecting her appetite. The Nurse Assessor has spoken to the registered manager about providing a more varied, healthy diet to Mrs. X and ensuring she is provided with adapted cutlery.
Mrs. X is nutritionally at risk.
Mrs. X presents with a ‘HIGH’ level of need as her nutritional status is “at risk” and may be associated with unintended, significant weight loss.
CASE STYUDY 4 – HIGH
Mr. X has a diagnosis of autism and severe learning difficulties. His condition causes sensory processing dysfunction, which manifests as strong aversions to certain sensations, textures and smells. He has a diagnosis of ARFID (avoidant/restrictive food intake disorder).
As a result of his sensory dysfunction, Mr. X dislikes most foods and suffers intense anxiety at mealtimes. Ongoing problems around food have resulted in significant weight loss and malnutrition. He has a BMI of 14 and is severely nutritionally compromised.
Mr. X is under the care of the mental health team and receives regular therapy; see Psychological & Emotional Needs domain. It is hoped that with time and specialist input, he will be able to overcome his aversions. Mr. X is seen fortnightly by the Dietician who prescribes supplements in an attempt to prevent further weight loss. A feeding tube has been discussed, but due to contraindications and the possibility of worsening aversions, this is considered a last resort.
Mr. X presents with a ‘HIGH’ level of need as he presents with significant weight loss or gain due to identified eating disorder.
CASE STUDY 5 – HIGH
Mrs. X has a Percutaneous Endoscopic Gastrostomy (PEG), and all her nutritional needs are met via the PEG. On admission to the home, she had Jevity liquid feed prescribed which was administered via pump. Unfortunately, Mrs. X was very restless and would knock the pump over affecting its running. Consequently, Mrs. X was not receiving sufficient nutrition; she lost a significant amount of weight and her nutritional status was deemed to be at risk.
Due to ongoing difficulties with the PEG-feed and concerns about weight loss, dieticians reviewed, and the pump was discontinued. All nutritional needs are now administered as a Bolus feed every hour, over a period of 10 hours.
Mrs. X needs to be positioned at a 45° angle whilst receiving the feed to reduce the risk of aspiration. She remains at very high risk of aspiration and requires very careful positioning pre-and post-feed. Mrs. X’s feeding regime is time consuming and complicated. Whilst she was for a period prescribed the feed hourly for 10 hours and this was reduced to 8 hours, she additionally required input for oral feeding and additional boluses of water.
After her feeding regime was changed, Mrs. X put on too much weight, at a rate of 0.5kg per week. The dietician was involved in reducing the feed whilst still trying to retain correct nutritional content. Bolus feed every hour needs to be slowly administered by the RN via a syringe into the feeding tube; the tube needs to be flushed with sterile water before and after each feed, and before and after medications (twice daily).
Mrs. X needs to be put in a 45-degree position for feeds; this requires two carers to put her into the correct position and ensure it is maintained. She needs to be bolstered with pillows as she has a tendency to lean to the left, due to left-sided weakness and poor sitting balance.
Mrs. X remains under the care of the Dietician, who reviews her condition monthly.
Mrs. X presents with a ‘HIGH’ level of need as she has problems relating to a feeding device (for example PEG) that require skilled assessment and review.
SEVERE
| Unable to take food and drink by mouth. All nutritional requirements taken by artificial means requiring on-going skilled professional intervention or monitoring over a 24-hour period to ensure nutrition/hydration, for example I.V. fluids/total parenteral nutrition (TPN).
OR Unable to take food and drink by mouth, intervention inappropriate or impossible. |
| Key Factor
Total parenteral nutrition Palliative condition: unable to take food and fluids orally, no intervention recommended |
CASE STUDY 1 – SEVERE
Mr. X has had a diagnosis of Crohn’s disease for many years and has required various surgical procedures. Following a recent flare-up of his condition, Mr. X required surgery to remove damaged sections of his small intestine (small bowel resection). Unfortunately, this has resulted in complications and symptoms of short bowel disease (SBD).
Mr. X is presently unable to absorb sufficient food and fluids due to damage to his small intestine and is significantly malnourished. He requires total parental nutrition (TPN) via a central cannula to prevent further weight loss and ensure adequate fluids. Due to a high risk of infection and sepsis, aseptic techniques and proper maintenance of the line are vital; please see Skin domain.
Mr. X’s nutritional regime is managed by the specialist Dietician who will visit daily, reducing to weekly providing no complications arise. Nursing staff in the home have undertaken, and will continue to receive, specialist training and direction from the Dietician.
Mr. X presents with a ‘SEVERE’ level of need as he is unable to take food and drink by mouth. All nutritional requirements taken by artificial means requiring on-going skilled professional intervention or monitoring over a 24-hour period to ensure nutrition/hydration, for example I.V. fluids/total parenteral nutrition (TPN).
CASE STUDY 2 – SEVERE
Mrs. X has a diagnosis of stage 4 breast cancer. Sadly, no further medical interventions are possible or appropriate. Mrs. X is approaching the end of her life; the priority is tender loving care, and ensuring her comfort and dignity as far as is possible.
Mrs. X has now entered the palliative stage and is receiving anticipatory medications; see Drug Therapies and Medications domain. She is largely semi-conscious and is unable to take any nutrition or hydration orally. Subcutaneous fluids were discussed, but Mrs. X has an advanced directive confirming she does not wish to receive this type of care at this stage in the disease progression.
Mrs. X requires staff to perform oral care every four hours.
Mrs X presents with a ‘SEVERE’ level of need as she is unable to take food and drink by mouth, intervention inappropriate or impossible.
We hope this has helped you to understand the first three levels of need in the Nutrition domain. Don’t miss the next instalment of the series coming very soon!
If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.
If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.
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