Nutrition and hydration in palliative care Hannah Roberts Specialist Upper GI Cancer Dietitian Bradford Teaching Hospitals

Aims Know the different types of nutrition support available Be able to choose and justify the most appropriate method of nutrition support for palliative patients Consider the ethical and moral arguments for artificial nutrition Understand the role of the dietitian in palliative care

Quick Quiz! Name 2 benefits of nutrition support in palliative care Name 2 risks of nutrition support in palliative care Give an example of food fortification Give an example of a supplement drink that needs to be prescribed What is enteral nutrition? Give an example What is parenteral nutrition?

Do the benefits outweigh the risks? Ethics and legality Hydration is basic care Spoon feeding is basic care Artificial nutrition is not basic care and classed as a medical intervention Key question: Do the benefits outweigh the risks? Oral nutrition and hydration should always be provided unless actively refused by the patient Medical team can deny a patient artificial nutrition – it is not a basic right. Ethics surrounding whether or not to commence artificial nutrition are complex. Emotive area. Raises issues such as should people in this country be allowed to starve? Focus on nutrition in this presentation. Not going to say whether it is right or wrong to feed. To try and decide whether a patient should receive any nutrition support in palliative care you need to have a good understanding of the options available.

Once started can you stop? Legal equivalence of withdrawal and withholding Can feel more comfortable not to start than to start and then discontinue Don’t deny patient the right of a trial of therapy Can trial with agreed objectives and time for review If artificial nutrition has been started can it be stopped? Common reason not to start using artificial nutrition in palliative care is that a decision will be needed about withdrawing feeding in the future maybe due to patient’s deterioration.

Hydration Good hydration essential for well-being Adequate fluid provision should not impair appetite Nourishing fluids

Benefits of nutrition support in palliative care Increase energy levels Resistance to infection Minimise muscle wasting and pressure sores Allows patient to retain some control over their illness Helps to maintain a sense of normality Can improve quality of life and sense of well being Eating can be a big part of people’s lives and not being able to eat has a significant impact on quality of life. Not eating sufficient leads to reduced energy levels and can reduce intake further. Nutrition can help to retain physical strength long enough to fulfil final wishes/ambitions Enables physical strength to obtain benefit from any physiotherapy/occupational therapy Patient can die with some dignity and not as a result of starvation

Risks of nutrition support in palliative care Aspiration Sepsis Haemorrhage Can prolong death Evoke feelings of fear and despair Food intake is associated with health and wellbeing for those patients struggling to eat they may feel isolated and depressed

When to use nutrition support Disease related malnutrition Weight loss Reduced appetite and early satiety Swallowing difficulties Also depends on stage of disease Curative phase – always appropriate Palliative phase – usually appropriate Terminal phase – rarely appropriate Obvious nutritional difficulties but a patient may have some of those problems and it still might not be appropriate to have any nutritional intervention. Consider the burden vs. benefit equation – balance shifts with phase of illness

Types of nutrition support Oral Enteral Parenteral 3 broad classifications

Oral nutrition High energy and high protein diet Food fortification Appetite stimulation Using full fat foods – too many palliative patients still trying to eat healthily using low fat spread and skimmed milk! Food fortification – adding calories without adding bulk e.g. add cream to soup, extra butter on toast, full fat milk in mashed potatoes, cheese to scrambled eggs etc…. *Eating with a small appetite diet sheet* Appetite can be stimulated using fresh air, small amount alcohol and low dose steroids

Food Fortification Breakfast Porridge Toast + butter Cup of tea Lunch Cup-a-soup Banana Evening meal Poached cod and jacket potato Yoghurt Extras Tea between meals Horlicks at supper Total: 980 calories and 48g protein Audience to suggest ways of fortifying menu

What difference can food fortification make? Breakfast Porridge….. Swap to whole milk and add golden syrup Toast + butter….. Add jam Cup of tea….. Make with whole milk Lunch Soup….. Swap to a creamy soup Add bread and butter Banana….. Add custard Evening meal Poached cod….. Add a cheese sauce Jacket potato….. Add butter Yoghurt….. Swap to a trifle Extras Tea between meals….. Make with whole milk Horlicks at supper….. Make with whole milk Add 2 biscuits and a slice of cake Total: 2070 calories and 75g protein That’s an extra 1090 calories and 27g protein!!

Oral nutrition Supplements (many different types!) - high energy and high protein drinks - high energy “medicine” - puddings - powders Supplement samples

Oral nutrition – when to use it If a patient can eat let them eat! Majority of palliative care patients Encourage higher calorie options (if liked) Use of supplements if a patient can’t eat “enough” Remember offering food and ensuring a patient has help at meal times if needed is a basic care “enough” – varies between patients Is a patient is willing to try supplements? *Copy of when to prescribe supplements (Guidance for GPs)* Some patients feel they can benefit and improve sense of well being. But can divert patients attention from the food they want to eat, not always liked and patients may feel guilty if they are unable to take them. Example: patient who didn’t get up until the afternoon due to a lack of energy, started on supplements and he felt they gave him some extra energy and was able to get up earlier and get some fresh air in the garden!

Enteral nutrition “using a tube” Naso-gastric (NG) Naso-jejunal (NJ) Gastrostomy e.g. PEG, RIG Jejunostomy Artificial feed (as recommended by the dietitian) is put down the tube via a pump or syringe Medication and fluids can be put down too Can be sole source of nutrition or to supplement oral intake Requires a motivated carer and patient – needs training to administer feed if still living at home. Body image issues

Enteral nutrition – when to use it Depends on the individual patient Unable to take nutrition orally Persistent swallowing difficulties As a result of increasing debility or dysphagia, a point may be reached when adequate nutrition can only be maintained by enteral feeding. For some patients may be a beneficial first step and for others it may not be appropriate as it may prolong the dying process. Decision needs to be made as part of a multi-professional team. Many factors to consider when deciding whether or not to use enteral nutrition e.g. aims of treatment (is it to prolong life or to maximise comfort?), prognosis, stage of illness, patient and family wishes Differences between head and neck cancer and upper GI- more palliative head and neck cancer patients are enterally fed compared to upper GI due to prognosis (better in head and neck) and treatment (can completely stop a patient eating in head and neck).

Parenteral nutrition Through a vein Requires appropriate access (usually through a central line) Home parenteral nutrition is rare in palliative care in England More common in Europe and USA Leeds and Hope hospitals are the nearest centres

Parenteral nutrition – when to use it Should it be used at all in palliative care? Non-functioning GI tract e.g. intestinal failure Do the risks outweigh the benefits? Burdens and complications often outweigh any benefit

Case study 1 67 year old male with laryngeal cancer April 04 - total laryngectomy Oct 06 - dysphagia CT scan showed bulky lymph node recurrence Managing soft diet but not meeting nutritional requirements NG tube inserted. Discharged home with NG feed. Completed palliative chemoradiotherapy Feb 07 - weight gain and improvement in oral intake. NG tube removed July 07 - represented with lower oesophageal dysphagia on a liquidised diet and sip feeds. Oesophageal stent inserted and oral intake improved Dec 07 - general deterioration, weight loss, minimal oral intake, poor prognosis Patient and family – “could he have another NG tube please?”

Case study 1 – issues raised Would NG feeding be of benefit to the patient? Do we have the right to refuse to artificially feed? What actually happened? NG tube placed 10th December and commenced feeding. Discharged to Manorlands Hospice with feed on 17th December. Stopped using NG tube on 20th December. Patient died on 24th December.

Case study 2 60 year old female May 06 - Diagnosed with locally advanced pancreatic cancer For palliative chemotherapy 12% weight loss in 6 weeks Early satiety and poor appetite Steattorhoea Following a low fat diet Blood sugar readings 20+ mmol/l What is the most appropriate method of nutrition support for this patient? No distant metastases but not operable

Case study 2 – issues raised Review of diabetes medication Commence pancreatic enzymes Not a low fat diet! Food first High energy and high protein diet Food fortification Nutritional supplements Avoid unnecessary consumption of simple sugars but not at the cost of energy intake Supplements milk based drinks, energy and protein powder, liquigen

The last few days Food and fluids for pleasure and comfort not for survival Consider patient’s wishes, anxiety and physical symptoms Nutrition support not usually appropriate Artificial hydration is controversial Do intravenous fluids provide symptomatic relief? Does it satisfy thirst, confusion headaches? Is it unnecessarily invasive? Senior doctor has ultimate responsibility although a competent patient has the right to refuse (incompetent patients can refuse via an advanced refusal As for any decision in terminal care primary goal is patient comfort therefore any decision should be made on this basis

The role of the dietitian in palliative care Advice on: poor appetite sore or dry mouth taste changes early satiety GI symptoms Assessing nutritional needs and problems Establishing which nutritional support measures are appropriate Use of appropriate supplements Enteral and parenteral nutrition support Advice and guidance to carers Training of staff and catering Also working with catering services in institutions for appropriate food provision Bradford dietitians are based at St Luke’s Hospital. Telephone number: 01274 365108

Conclusions Range of nutritional support options available to use in palliative care Deciding when to use nutrition support can be difficult Decision should be made as part of a multi-professional team (including the patient!) Discussions should happen earlier rather than later