Ongoing Assessment
Ongoing assessment of changing needs and preferences is critical.
- Staff fail to recognise and respond to changing needs and preferences (e.g. a person loses their ability to safely swallow food, fluids and/or medication).
- The person experiences unnecessary harm and suffering.
- The person is given inappropriate nutrition and hydration support (inconsistent with either their needs or preferences).
- The person is not provided with food and drinks that meet both their preferences and needs.
- Undertake ongoing assessment of need using appropriate assessment tools.
- Ensure care planning documents are up to date and reflect the needs and preferences of the person and are accessible to care staff.
- Ensure a multi disciplinary approach to care and make referrals to health professionals with relevant expertise e.g., dietitians, speech pathologists, specialist palliative care where needed.
- Continuously monitor for swallowing and choking risk and ability to continue to eat and drink comfortably.
- Review care documentation to check that the person’s needs and preferences are captured (along with any Advance Care Directives), and that staff are aware of these preferences.
- Actively seek feedback from those involved in the care of the person who is dying.
- Review incident reports to identify whether risk mitigation strategies are effective or if they need adjustment.
Needs and preferences will likely change during the palliative phase
A person’s nutrition and hydration needs and preferences will likely change throughout the palliative phase. In the earlier stage of palliative care, nutrition and hydration supports can help to boost tissue repair and general wellbeing, and prevent infection.4 For those experiencing rapid deterioration in the last weeks and days of life, it is common to experience physical difficulties with eating and drinking and reduced desire and need for food.
Common challenges include:
- malnutrition or dehydration
- wasting syndrome (cachexia) with marked weight and muscle loss (often a sign of advanced cancer, heart failure or advanced chronic obstructive pulmonary disease) (COPD)
- swallowing problems (dysphagia) which affect the ability to safely swallow food, fluids and/or medication
- a physical obstruction prevents eating or drinking
- discomfort or pain is exacerbated by eating or drinking
- weakness or fatigue makes it difficult to receive oral nutrition
- loss of desire to eat or drink.3
The person has a right to refuse nutrition and hydration
Dignity of risk is a person’s right to make their own decisions about their care and services, including making choices that involve some risks. A person may choose not to eat and drink or to be artificially fed or hydrated. That is their right and it should be respected. Equally, they may choose to continue to eat and drink in a particular way, despite associated risks. This should also be supported, following discussions with the person about the potential risks to them.
Regular assessment is needed
Regular assessment during the palliative phase is essential for an individualised, person-centred approach that is responsive to changing care goals and nutrition and hydration needs and preferences.5 Reassessment when the person is imminently dying is critical to enable responsiveness to specific end of life circumstances.6
A nutrition and hydration assessment should form part of a broader assessment of the person’s care needs goals and preferences. The Palliative Care Standards7 identify comprehensive assessment and a corresponding care plan as foundational to supporting better experiences and outcomes. Likewise, the Aged Care Quality Standards require aged care providers to undertake ongoing assessment and planning with consumers to identify and address their current needs, goals and preferences.8
Regularly reassess:
- care goals which may change in different phases of palliative care
- nutrition and hydration needs and preferences including - what the person likes to eat and drink - when they like to eat and drink - what makes a positive dining experience - individual and nutritional needs (e.g. intolerances, cultural considerations) - issues that impact the person’s ability to eat and drink (e.g. discomfort/pain, oral health, behaviour, cognition, dexterity and if physical assistance needed)
- if referral to a health professional with expertise (e.g. dietitian, speech patholoigist) is needed
A multi-disciplinary approach to nutrition and hydration assessment may be needed
Sometimes referral to a health professional with relevant expertise to assess nutritional needs and identify options4, will be beneficial.
- Early counselling with a dietitian can offer strategies for changes in appetite or food textures to maximise enjoyment and nutritional intake.
- Where the person is experiencing issues with swallowing, referral to a speech pathologist for assessment, diagnosis and individual management strategies will enable identification of safe swallow strategies or appropriately modified food and drinks.9
- Speech pathologists can support strategies for people who choose to eat and drink with acknowledged risk.
Much can be done to enable continued nutrition and hydration
There are many ways to support a person to keep up their nutrition and hydration during the palliative phase including:
- Assisting the person to prepare for and enjoy the dining experience (see box)
- Understanding their social preferences: do they want to sit in the dining room with others or dine in their own space? Do they want to share a meal with visiting family or friends?
- Providing food and drinks the person desires (while recognising that what they feel like having may change over time).
- Modifying portion sizes if they have low appetite or tiredness.
- Small meals and snacks throughout the day can be easier to manage than big meals.
- Scheduling mealtimes when the person has the most energy.
- Using fortified food or drinks with extra nutrients (e.g. Resource or Ensure).
- Modifying food texture to support easier digestion and reduce choking hazards.
- Providing mouth care including keeping their lips and mouth clean and moist.
- Administering artificial nutrition and hydration (only if appropriate and consent has been obtained from the person, or, if they lack capacity, their substitute decision-maker).
Supporting the dining experience:
- Support to sit upright in bed or in a chair
- Ensure the food and drink is within easy reach
- Consider use of aids and equipment such as modified cups, plates, cutlery and plate guards, or contrasting plates/placemats
- Find out if they wish to eat with others (e.g. in the dining room) or in their own space
- Facilitate opportunities to share food with their family and friends if they wish
- Make snacks and water available at all times
- Find out if they wish to wear their dentures while eating (where relevant)
- Encourage use of glasses or hearing aids (where relevant) to support sensory enjoyment
- If helping the person eat, ask how they'd like to be supported, keep at eye level for prompts and check for any difficulty swallowing
- Reduce distractions
- Ensure they don’t feel rushed
- Help with mouth care.
While important to prevent or treat avoidable malnutrition in the palliative care context, it is also important that nutrition and hydration support measures are not so invasive or unacceptable that they impair the person’s quality of life.10