Many caregivers, even if they know their loved one has a life limiting or threatening illness, tend to take one day at a time and often cope by "living for the day". A time will come however when progressive weakness and other physical signs suggest that your loved one is nearing the end of their life. The probability of surviving for days, weeks or months may have been discussed. During this time you may find yourself thinking about difficult issues related to your loved one's care, including the ongoing provision of nutrition and fluid when the desire or ability to eat has been lost.
Difficulty swallowing (dysphagia) and loss of appetite and interest in food (anorexia) may be apparent during this time. Swallowing problems can be due to a number of factors including:
- Weak swallowing muscles and weak swallow reflex.
- Drowsiness due to the disease itself, the dying process or sedation which is sometimes necessary for the relief of pain or other worrying symptoms. Your loved one may not be able to stay sufficiently awake to eat safely and might fall asleep with food or medications retained in the mouth.
- Confusion and reduced awareness of food and fluid in the mouth and the need to swallow.
- Fatigue. The simple act of chewing food and the repetitive requirement to swallow may quickly lead to exhaustion.
- A dry mouth which affects the ability to adequately chew and moisten food in preparation for swallow.
- Inability to sit upright.
- Shortness of breath making it difficult to coordinate swallowing and breathing.
Adequate nutritional intake is often difficult, if not impossible, for the person in the final stages of their illness. This can be very distressing for family and friends who struggle to continue providing food and fluid in the hope that this will assist their loved one to keep up their strength and live longer. You may be concerned and anxious that your loved one is losing weight and strength, cannot eat and appears to be starving to death. It may also be frightening for your loved one, as attempting to eat and drink may result in coughing and choking episodes. Food may become more of a discomfort than an enjoyment.
Tips for feeding difficulties
Comfort feeding: The main goal of feeding towards the end of life is to maintain social closeness and provide food and drink so long as eating remains enjoyable, safe and comfortable. This is known as "comfort feeding" and does not involve forcing a person to eat or making them feel guilty if they don't. Your loved one needs to know that their decision not to eat will be supported.
Re-focus care: During this time, family and friends may need to re-focus their care on nourishing the soul, spirit and mind rather than the body. Alternative ways of nurturing include:
- Keeping the lips and mouth moist.
- Gently massaging the skin using lubricants.
- Reminiscing about earlier times and happenings.
- Playing favourite music selections.
- Sitting in silence and sharing the time.
- Reading a book to your loved one.
- Praying with your loved one.
Dry Mouth: A dry mouth can be relieved with wet swabs, ice chips or sips of cold drinks provided it is safe for your loved one to swallow. Apply lip balm to dry lips. Use mouth sponges/foam sticks frequently to gently clean the teeth, gums, inside of the cheeks and tongue. Mouth cares are important for comfort and dignity.
Modifying food and fluid: Sometimes a person can continue to swallow safely by maintaining a certain position while eating or by changing to foods and fluids that are easier and safer to swallow. Tolerance of food generally progresses from solids to puree to liquids to ice-chips and spooned or sucked water. Ask to see a Speech Pathologist if you have any concerns about swallowing problems.
Reduce amount: It is best to offer very small amounts of food and fluid (teaspoons).
Safe positioning: It is safest for the person to eat in a fully upright position.
Ensure alertness: Never feed a person who is unconscious due to the danger of choking or food and liquid going into the lungs (aspiration).
Artificial nutrition and hydration and end-of-life decisions
When someone with a serious, life–limiting illness is no longer able to eat or drink it usually means that the body is beginning to stop functioning and can no longer process food and fluids as does a healthy body. Families are often concerned that their loved one may be hungry or thirsty and that tube feeding (artificial nutrition and hydration) will make them more comfortable or prevent a painful death from dehydration or starvation.
It is essential to understand that artificial nutrition and hydration will not bring your loved one back to a healthy state. The body is beginning to shut down because of the disease and dying process, not because of the absence of food and liquid.
Forcing your loved one to eat, or starting artificial nutrition and hydration will not help them to live longer, feel better, feel stronger, or be able to do more. In fact, most doctors agree that artificial hydration and nutrition in these circumstances can increase symptoms of discomfort such as bloating, nausea, swelling, cramps, diarrhea and shortness of breath.
The cancer literature tells us that people in the final stages of disease experience little hunger or thirst near the end of their lives and those who do need only small amounts of food or fluids for relief. Anorexia and dehydration probably even help people to die more comfortably by helping the body to release larger amounts of the body's natural pain relieving chemicals (endorphins). A dry mouth is common and uncomfortable but can be relieved with mouth cares and sips of liquids as long as swallowing remains safe.
Who can help?
Making a decision about comfort feeding can be very difficult especially if your loved one can no longer communicate their wishes to you. Family members and close friends may have different opinions which can cause conflict and feelings of guilt. Remember you are not alone. You can benefit from the experiences of other people who have shared your journey. For more information contact the Palliative Care Information Service on Freecall 1800 772 273 or visit www.pcis.org.au.
It is important to discuss your concerns with someone you know and trust. Talking to your GP or palliative care team will help to clearly explain the medical facts about comfort feeding and tube feeding at the end of life.
Produced by the Department Speech Pathology Mater Hospital Brisbane
Raymond Terrace, South Brisbane Q 4101
Telephone 07 3163 8111
© 2012 Mater Misericordiae Health Services
Brisbane Limited. ACN 096 708 922
Mater acknowledges consumer consultation in the development of this patient information.
Mater Doc Num: HOSP-001-04043
Last modified 13/11/2015.