Artificial feeding and hydration – are they compulsory?
Artificial feeding (also called ‘nutrition therapy’) is an alternative feeding method that can be used in some situations to sustain life when eating and swallowing are no longer possible. Artificial hydration is the process of introducing additional fluid into the body to ensure adequate levels.
Some people feel uncomfortable about both procedures which can be seen as intrusive and a ‘medicalisation’ of death. The right to refuse will depend on the country in which the individual lives, but in most cases people have the right to choose or refuse any treatment and the decision to give either should be based on each particular case. If no preference has been expressed and the individual is not well enough to make a decision, the doctor will always decide what is in their best interests, weighing up the advantages and disadvantages. They will consult with the carer and relatives and all decisions will be recorded, monitored and audited.
Whilst artificial feeding or hydration can be very beneficial in some cases, it may not always be appropriate particularly as there is no evidence that nutrition or hydration actually prolongs life when death is imminent. Therefore there are a number of key factors to be considered before either treatment is administered including:
- respecting the individual’s wishes and those of the carer and family
- allowing the individual, if competent, the right to decide whether they want to eat or not
- acting in the individual’s best interests
- maintaining wellbeing and the best possible quality of life
- providing supportive care
- minimising the effects of malnutrition
- minimising any side effects of treatment.
Artificial feeding
The common forms of artificial feeding are:
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nasogastric tube feeding - a tube is inserted through the nose and into the stomach allowing liquidised foods or medication to be passed through. This is generally used as a short term solution to a persistent problem
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gastrostomy feeding - a very narrow tube is inserted directly into the stomach allowing specially prepared foods as well as medications to pass through, sometimes with a dietary supplement to maintain the calorific and nutritional balance. The most common method of gastrostomy feeding is known as PEG (percutaneous endoscopic gastrostomy) and this is used as a longer term method of feeding. Once the insertion wound has healed normal bathing can be resumed. Compared with most kinds of surgery, PEG feeding is a safe, uncomplicated and almost routine procedure. It may be possible for small amounts of food to still be taken through the mouth but a doctor or speech and language therapist should always be consulted before trying this. Whilst a person’s right to refuse a PEG should be respected,no one is automatically entitled to one either. A doctor will be able to determine what is for the best.
When artificial feeding is an option, key factors that need to be taken into consideration include:
- hunger
- whether nutritional supplements are already being given
- if a desire to live or die has been expressed
- whether it is the individual’s wish that nutritional support be given
- whether such support might increase the risk of complications.
Although many people may not be in favour of artificial feeding it can ease anxiety and discomfort, maintain hydration and a reasonable food intake leading to increased energy levels and general wellbeing, although this will not always be the case. PEG feeding does not eliminate the risk of aspiration but it does reduce it. It is important to remain open-minded and discuss the advantages and disadvantages with the care team.
It can take time for lost weight and strength to be regained so it may be better to undergo the procedure sooner rather than later in order to maintain good nutrition, but always consult with the doctor to determine if this is the best course of action.
Medications can still be taken if needed and the doctor will advise on the most suitable way - some may be injected and some may be fed as a liquid or solution through a tube.
Any decision to give or withdraw feeding must be fully documented and discussed with close family where feasible and all parties’ wishes should always be taken into account.
Artificial hydration
Artificial hydration is usually necessary when a person is too unwell to drink enough water or eat enough food and, in a clinical setting, is usually carried out intravenously (also known as IV fluid replacement) in which case fluid is introduced directly into a vein. But fluid may also be introduced under the skin, known as hypodermoclysis, or subcutaneous fluid replacement, and this can be carried out by a carer or family member in the home after being shown how by a doctor or nurse. For both methods fluid is fed through a tube leading from a ‘drip’ bag so that the hydration process is slow and steady.
Once again, this is something that should be discussed with both the doctor and family so that personal wishes are respected.
Artificial hydration can improve delirium, nausea, constipation and postural hypotension but may not alleviate symptoms such as a dry mouth or thirst, and in some cases it might worsen restlessness and incontinence.
As with artificial feeding, medications can still be taken if needed and the doctor will advise on the most suitable way - some may be injected and some may be fed in as a liquid or solution through a tube.
Cardio-pulmonary resuscitation (CPR) – is it compulsory?
Cardio-pulmonary resuscitation (CPR) is the procedure used to restore normal breathing if the heart stops beating. It includes clearing air passages to the lungs, ‘mouth-to-mouth’ artificial breathing and heart massage by exerting pressure on the chest. CPR is an area routinely discussed when planning end of life care. As such, any wishes are often included in the patient’s care plan.
Anyone can make the decision not to undergo CPR and this will be documented as “not for CPR” in the medical notes and care plan. This request should be respected. If you have not expressed a wish either way then CPR will usually be given unless there are circumstances where the team believes that it is futile and not in the individual’s best interests.
Can I leave my brain for medical research?
Research is a key aspect of treating and managing Parkinson’s and there are many ongoing projects and trials in various countries. According to a report by UK scientists in January 2009 there is a shortage of brain donations for research and more people are being urged to help by arranging brain donation prior to death2.
People with Parkinson’s may wish to help the future treatment of the disease by leaving their brain for medical research but it is always a good idea to discuss this possibility with family, the doctor and the executors of your will.
Because organs need to be collected within a few hours of death it is important to register willingness to donate tissues with a hospital or tissue bank. Many institutions have a consent form which must be signed and it is advisable to put your wishes in writing and have this document signed in the presence of a witness.
Some countries have a national organ donor register with a card that can be carried indicating a willingness to donate in the event of death. However, do check that organs donated in this way can be used for research as well as for transplant as this may not automatically be the case.
National Parkinson’s associations will be able to provide further information. You can also talk to your doctor or other healthcare professional, or look online.
